what’s with all the gluten intolerances?? let me explain…

Posted on February 16th, 2012

You might have read a column by a former colleague of mine Mia Freedman recently where she questioned people’s food intolerances, specifically gluten, and avoidance of certain foods, specifically sugar. Funnily, I’m both intolerant to gluten and had to quit sugar due to an autoimmune disease.

I was asked during Monday’s webinar for my thoughts. Which I shared. Sadly, it wasn’t saved (the webinar, that is…sorry!). And so I thought I’d post a more detailed response to some of the questions Mia asked, such as, Why so many intolerances? And, Why now? And, Really?

Pic by Jason Schembri

First up. I agree with this point: evangelists are painful. Sharing of information is good. Being your message is ace. And, always, doing your own thing is cool. But preaching does no one favours.

But as David Gillespie wrote during the week on Twitter in reaction to the column, most folk who don’t eat gluten or sugar don’t talk about it….until they’re interrogated as to why they’re not eating their cake.

People want details. They want proof. They want to learn more. Sometimes they want to catch you out.

As to whether quitting sugar has merits…you can catch up here and here

As to whether gluten intolerances are valid, and to the issue of “why suddenly now”… well…I’m going to share facts. No evangelising.

what is gluten, and gluten intolerance?

Gluten’s a protein found in wheat, barley, rye, spelt, kamut, and oats (to a lesser extent). Gluten sensitivity is an autoimmune disease that creates inflammation throughout the body, with wide-ranging effects across all organ systems.

A review paper in The New England Journal of Medicine listed 55 “diseases” that can be caused by eating gluten. including osteoporosis, irritable bowel disease, inflammatory bowel disease, anemia, cancer, fatigue, rheumatoid arthritis, lupus, multiple sclerosis, and almost all other autoimmune diseases. Gluten is also linked to many psychiatric and neurological diseases, including anxiety, depression, schizophrenia, dementia, migraines, epilepsy, and neuropathy (nerve damage). It has also been linked to autism.

This WSJ article on how gluten sensitivity works is worth a read. 

where does celiac disease fit in? 

So we’re clear, celiac disease is a permanent intolerance to the gliadin part of gluten. It is genetic, and an inherited condition. Celiac disease is an autoimmune condition, where the body’s immune system starts attacking normal tissue, such as intestinal tissue, in response to eating gluten. This will continue as long as these food products are in the diet.

People with celiac disease are at risk for malabsorption of food, which cause nutritional deficiencies and may also result in conditions such as iron deficiency anemia, osteopenia, and osteoporosis.  People with a gluten intolerance usually do not have as severe intestinal damage, and therefore are not at high risk for these nutritional deficiencies.

Recently a large study was done with gluten sensitive patients, and celiac disease patients, as well as a number of control subjects. All were subjected to a gluten challenge for four months, followed by a gluten-free diet.

The findings were:

  •  the anti-gliadin antibody status is different for gluten-sensitivity versus celiac disease.
  • there’s no ‘leaky gut’ in gluten intolerant patients. This is specifically related to celiac disease.
  • none of the gluten intolerant patients had anti-wheat antibodies. The response to gluten is quite different from an allergic reaction to wheat.
  • in gluten-sensitive patients, gluten activates the ‘innate’ immune system – meaning that the protein is immediately recognised as foreign and toxic. Celiac disease involves activation of the ‘adaptive’ immune system, which initiates an autoimmune reaction.
  • Gluten-sensitivity in the absence of celiac disease is a real phenomenon, and can be clearly distinguished at a molecular level.
  • A gluten-free diet resulted in a relief from symptoms in gluten-sensitive patients within a few days, and this lasted for the whole 4 years of the study.

why is everyone quitting gluten now?

There are a number of very valid reasons for the growing number of people having to pass on the pizza.

The short form: gluten is a poison (see below). We tolerate it, and tolerate it, like cigarettes in the lungs. And then. One day. It’s too much. Things tip over and BANG we have lung cancer. Or gluten intolerance. Or celiac’s disease.

But more detail…and they’re facts, mind.

* We’re eating more wheat than ever before. Tried to eat lunch lately without wheat? Pizza, foccacias, turkish toasts, pasta… And noticed how BIG the bread-y bits are?

* And add to that: Wheat today contains more gluten than ever before. Spelt, for instance, is an ancient version of wheat. It’s low-gluten, as many of you know. But it was long abandoned for modified strains of wheat that contain more gluten. Why? Gluten is an insecticide (see below) so farmers like a strain of wheat that requires less pest control. Gluten makes for lighter, fluffier, Wonder Bread-ish baked goods…so bakers like the super gluten strains, too.

Bread’s been bred to be more… poisonous.

* And then there’s the Pottanger’s Cats theory. In the 1930s Francis Pottanger ran experiments on cats over 10 years and found that when he fed them the cat equivalent of McDonalds they got sick. He found the illnesses (including infertility and the same degenerative diseases we’re now seeing in humans) took several generations to kick in. And that it took four generations again of being fed good food for normal health to be restored.

The point being…intolerances haven’t just suddenly happened now.

They’ve built up and accumulated over the generations. Our grandparents started eating processed, high-wheat and gluten diets. Now we’re copping it.

* And so you know: A study comparing the blood of 10,000 people from 50 years ago to 10,000 people today found that the incidences of full-blown celiac disease has increased by 400 percent. Far more people have gluten sensitivity than you think. Celiac disease affects 1 in 100 people. But milder forms of gluten sensitivity are even more common and may affect up to one-third of the American population.

* Plus, for years people simply didn’t know they had gluten issues. It was put down to all kinds of other things. The symptoms are so very varied.

* And finally, the damage gluten does in our guts also leads to other auto immune diseases and intolerances (in case you’re also asking, Why’s everyone got auto immune diseases now). People with celiac disease are also more likely to have an autoimmune disorder. And people with an autoimmune disorder are more likely to be very sensitive to gluten…and so the cycle continues.

Add all this together. It’s a mess. A glutinous mess, right.

but back to beginnings: why is gluten so bad?

Grains, like wheat, are defenseless little things – the only way they can fight back against predators is via the poisons in their husks. Ergo, gluten.  Some creatures, like birds, are clearly adapted to overcome the defenses of gluten cereal grains. Most animals, including most mammals and our closest relatives the omnivorous fruit and insect-eating chimpanzees, are not adapted to grains and don’t eat them in substantial quantities.

The question is, are humans adapted? Nope. We have the same makeup as our primitive relatives who didn’t eat grains. The only thing that’s changed is our diet. Massively so.

You’re not gluten-sensitive? Still, your body strains to adjust to it in your system, one way or another. It’s a stressor, and it takes its toll somewhere. You just might not have tipped yet.

how does gluten poison?

1. It eats away at your gut lining. If the gut is damaged, you do not absorb nutrients.
2. It messes with the gall bladder and bile production. If you do not absorb fats and fat soluble nutrients such as vitamins A, D, K, and other nutrients, you will have problems utilizing any minerals you do absorb, to say nothing of the nutrient deficiencies from inadequate essential fats.
3. Phytates tightly bind to metal ions and make them unavailable for absorption.
4. All of which can lead to autoimmune disease and cancer. Once the gut lining is damaged, we are at exceptionally high risk of autoimmune disease, such as Hashimoto’s, and several types of cancer, including non-Hodgkin’s lymphoma. The pancreas is assailed by grain-induced inflammation due to CCK problems and elevated insulin levels. This inflammation is a potential cause of pancreatic cancer and pancreatitis (inflammation of the pancreas).

what’s my deal?

I have Hashimotos.

And it’s said up to 90 per cent of Hashimoto’s sufferers have celiacs disease

How’s this work? It’s a case of mistaken identity. The molecular structure of gliadin, the protein portion of gluten, closely resembles that of the thyroid gland. When gliadin breaches the protective barrier of the gut, and enters the bloodstream, the immune system tags it for destruction. These antibodies to gliadin also cause the body to attack thyroid tissue.

why not just do some good ole’ moderation?

This is my least favourite input to these kind of debates. Sometimes moderation is not possible. There’s no “80/20″ rule when it comes to gluten. Being “mostly” gluten-free ain’t going to cut it. Once you’ve tipped, the smallest amount triggers an autoimmune response. A drop of soy sauce, say. Even worse, the immune response to gluten (even just a crumb)  lasts up to 6 months each time.

come on, it’s not going to kill you.

Um, not correct. According to the journal Lancet (Vol 358, August 4, 2001) when someone with gluten intolerance eats gluten – even just a little – it increases their risk of death by 600 per cent.

Yes. 600 per cent.

I don’t know. If eating one particular food substance can risk this…well I’m going to ask if my Pad Thai has gluten in it. Bollocks the doubters.

Plus, a recent large study in the Journal of the American Medical Association looked at almost 30,00 patients from 1969 to 2008 and found there was a 72 percent increased risk of death in those with gut inflammation related to gluten (but no celiac’s), and 35 percent increased risk in those with gluten sensitivity but no celiac disease.

well, why not just wear a “I’m celiac” sticker?

Testing for full-blown celiacs is highly problematic. Partly because it means going back on gluten for 6 weeks (so that antibodies are present), and partly because once your immune system is weakened it affects the accuracy of the tests.

Until there are better diagnostics, those of us with AI diseases don’t eat gluten. And share what we know and what helps.

great gluten-free chicks

Am I evangelising? I’ll stop now and just point you to a few great tweeps who share their tricks. For inspiration, follow Shauna James Ahern (@glutenfreegirl). Shauna also recommends: @SimplyGlutenFre @WholeGang @elanaspantry @sensitivepantry @jenncuisine @jennsutherland, @GingerLemonGirl @ATXglutenfree @newfoundceliac  @fourchickens

Over and out.

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  • Mel

    NOOOOOOOO….not another food blog.

    Please make my morning tomorrow and post something different.

    [Reply]

    Sharni Reply:

    Yes! I miss the varied posts. I like the odd bit about food but miss the thoughtful, philosophical posts also.
    But, on the flipside….
    I did think of you immediately when I read Mia’s column and am glad you have responded however.

    [Reply]

    Judy Reply:

    Just don’t read it Mel! Surely your life must not depend on a ”Sarah’ post each morning for you to function for the day?

    [Reply]

    Elisa Reply:

    Mel, a post that means nothing to you means everything to the next person. Do what I do, if the topic doesn’t appeal I don’t read it!

    Sarah, thanks for responding to mia’s article & for your detailed explanations. I really appreciated this. I hope the mamamia readers all have a read of this too.

    [Reply]

    Jenna Reply:

    Agreed completely!

    [Reply]

    Emma Galloway Reply:

    I 2nd that Elisa!

    picardie.girl Reply:

    I hope they don’t read the nasty comments though – Sarah’s response is fair enough but the comments are horrible.

    [Reply]

    Lara Reply:

    This may possibly be my favourite post ever. Each to their own, you can’t please everyone.

    [Reply]

    Emily Reply:

    Hi,

    Where do you go to find out if you have celiac disease, intolerances or autoimmune disease? I would love to find out what I’m allergic to and what I need to stay away from.

    Em

    [Reply]

    MirandaBB Reply:

    Hi Em

    I’m sure there are many readers more qualified than I but here are some suggestions. I wish it was simple to find answers (because often you have a few things going on). I think people visiting this site could testify to the frustrations of having to discover alot of things themselves. But you might be lucky!

    - Find a knowledgeable and supportive doctor (often the integrative kind are willing to trial more things and use a wider battery of testing – check out http://www.acnem.org/) or a naturopath or dietician (such as Shepherd Works who specialise in GI conditions).

    - For info re Coeliac Disease, Coeliac Australia http://www.coeliac.org.au/ are a great resource. When I was trying to unravel what was going on for me – tests came back neg for CD but I decided to follow a GF diet anyway – I was able to join as a member. Try & rule CD out before you decide on a GF diet (because if you feel good you will not want to touch gluten again).

    - For intolerances it’s a whole other realm and there aren’t tests for everything. Often it’s trial and error with an elimination diet. Definately recommend keeping a food diary. After many years I discovered I have Fructose Malabsorption from doing 4 very simple hydrogen breath tests. I highly recommend them: http://shepherdworks.com.au/disease-information/hydrogen-breath-testing (actually Shepherd Works are a group of dieticians who are very knowledgeable about a range gastro-intestinal conditions. They are Vic based but consult & test across Australia).

    - AI diagnosis is out of my experience… I’m sure there’s more info under Sarah’s auto-immune tab.

    Good luck!

    [Reply]

    a reader Reply:

    I’m not a fan of the blog post above – it is riddled with the kind of statements that are causing gluten avoidance to become a trend. Eg unsupported comments like “gluten is a poison”. Sources, please. Gluten does not eat away at your cilia unless you have an autoimmune disease. It’s like arguing that everyone has Hashimoto’s. It’s completely unreasonable. That is to say the absolute least…

    Also, as a coeliac who continued to have gastrointestinal problems on the gluten-free diet for years and years, I second Sue Shepherd’s work with Monash Uni on the FODMAP diet. This is, unlike many of the food avoidance rituals available to health-concerned women (yes, check the usernames) and chronically ill individuals over the internet, is based on good research. Personally, I can say that for me, where nothing else had helped, it was of some assistance – which in my situation was deeply significant. That’s not to say it’s a miracle cure but it’s good information worth checking out. I couldn’t actually find any specific guidance on it from any GP or dietitian in Sydney, although it seems that even since a year ago, it may have spread a little more. My boyfriend at the time was kind enough to get me the book (I am pov – it is probably available in some libraries) and I followed that. I seem to remember there are people who do the breath testing in Summer Hill. I haven’t had that as it was privately billed and expensive and apparently was unavailable through the public system – that’s what I was told at the time. The gastroenterologist I talked to also thought it was unreliable. I know that Sue Shepherd compares methane and hydrogen breath testing and argues that one is superior, for reasons I can’t remember.

    It’s excellent to hear a reference to appropriate testing for coeliac disease and membership of the Coeliac Society.

    eve Reply:

    Hi Em,

    I went to see a dietician at the Royal Prince Alfred Hospital Allergy Unit: http://www.sswahs.nsw.gov.au/rpa/allergy/ (recommended by an allergist and after yaers of visiting doctors, naturopaths etc). They put you on a food elimination diet which is difficult – you can’t cheat at all otherwise your results aren’t accurate. I had previously tried a blood test which was a complete waste of time and money.

    I turned out to be intolerant to wheat, dairy and moderately to amines (they are in “good” foods such as spinach, broccoli, mushrooms – anything tasty apparently !! crazy!) I didn’t see any point in testing food additives as they are often in foods I have to avoid anyway. MSG, I have found through trial and error, is an absolute killer for me, worse even than wheat.

    Even though the food elimination diet identified MOST of my intolerances, I suspect I am intolerant to more foods – eg. all grains, not just wheat. A naturopath I had seen before food elimination got me off all grains for 10 days and I felt so well.

    If you want quick and dirty results, just try no grains for 10 days. If you still don’t feel 100%, try the food elimination diet. I suggest have a dietician supervise you because you’re more likely to stick to it if you have to report back. Also, if you have a social life, I suggest doing it in winter when you are more likely to hibernate :)

    [Reply]

    a reader Reply:

    Skin-prick testing usually doesn’t show up food intolerances and only some allergies. Blood tests are relevant for coeliac disease, which is at the centre of any discussion of cutting out gluten, because they are a screening indicator, although they can give both false negatives and false positives.

    I was on that fricking elimination diet for so long (about 4 years) I know it backwards, and throughout all of that time, while my symptoms continued, I was not diagnosed with coeliac. They also only have that specific model of food intolerance, or they did at the time, which related to build-up of food chemicals, namely salicylates, amines and glutamates. While an interesting model and surely one worth testing with some people, I found it pretty limited; there was no way for the clinic to really assess what on earth was going on, to be honest. There are so, so many potential intolerances which do not relate to that list of food chemicals. Because of my experience there and my findings that they used only that model and still have not incorporated things like FODMAP research (apparently, when I called and checked) … I kind of consider them outdated. Also I just remember that waiting room – 2 hours with restless kids at times? Certainly seemed like it.

    I would definitely get advice from a dietitian, but moreover, I’d say a switched on dietitian – plenty, I could tell them more about CD than could tell me, and that was prior to diagnosis. (Which makes me sound quite obnoxious, but I’m just saying – that’s not what I am after when seeking the advice of an expert – I’m wanting guidance.) It’s really, really easy to follow follow follow the super strict diet and then every now and then go * it, and branch out and eat a small amount of something you’re technically not supposed to have. For food intolerance that is not supposed to be so bad, but for coeliac disease, you simply can’t do that. Ever.

    Note I don’t consider the gluten avoidance described in the article above to bear any relevance to coeliac disease. Incidentally, in Australia we spell it with an O, and always have, and it’s not a plural.

    (Am I really reading references to the diets of birds and chimps? Yes, yes I am. SIGH.)

    Tania Hubbard Reply:

    Thanks Sarah – speak it out. Your truth, your findings, your own body tell you what is good and what is not for YOU. I have lived gluten and grain free for 9 years since a diagnosis in Canberra. Since then – WOW – life is GOOD. I don’t need to tell anyone my story – I only share it when people ask me – for those that need to be subjective, sarcastic and obtuse about my choices – no problem – I love em anyway!

    [Reply]

    Sarah Reply:

    Yet another great post, I need to memorise it all for people who hassle me.
    By the way, I have had a really bad lower back for 4 years. I had to manage it with 2 supervised sessions of physio a week, exercises at home, wedge in my car seat, osteo, etc etc. I started eating less gluten because my son cant have it. I began to feel better, so cut it out 100% about three months ago. My back is better, no kidding! I had a 6 week break over summer from pilates and have just gone back to one session a week for health. I used to be in pain between two sessions per week. I Am lifting more than ever, my 20 month old chubby cherub. My physio, who does paleo said – sure – your back is better because you dont have the inflammation. Its AMAZING!!!!

    [Reply]

    jan Reply:

    I’d just like to add to the conversation by saying that I don’t think anybody should be embarrassed because they are intolerant to gluten (or any food). When you go to dinner at a friend’s place, I think if you just ask them, do you know that I can’t have gluten and ask them if they know about it. If they don’t you can then explain it in a few simple sentences. Offer to make the dessert – I have now got a great little collection of gluten free cakes and desserts and they are as delicious as any others.

    When I was learning Bowen Therapy, one of the exercises we had to do was learn how to explain Bowen Therapy in a few short sentences to somebody who knew nothing about Bowen Therapy – then we had to get up in front of the class and say it! If you do that with a food intolerance, practice a short simple answer in front of the mirror, it will help you to sound calm and confident and if it’s not an issue with you, it won’t be an issue with the person that you are speaking to.

    [Reply]

    jan Reply:

    Whoops I meant to put this at the end of the comments, sorry!

    Vicki Reply:

    Nicely said Jan.

    I don’t get the reluctance of talking about being gluten intolerant/sensitive or having Coeliac Disease (this is not an intolerance, it’s an auto immune disease – it’s just been a convenient way to describe it).

    Talking helps people understand. There’s no fine line between preaching and gently informing – there’s a canyon.

    My friends and family want to feed me, they love me. They take my disease seriously, there but by the grace of god they merrily go. Bowel cancer has reared its ugly head in the past few years, information is life altering.

    The friends who have successfully fed me without poisoning me (well only once), now have knowledge and understanding. One has two nieces recently diagnosed with CD. Feeding me has allowed her to pass knowledge on to her sister, and amongst her family so they can happily have the kids to stay. Knowledge is power.

    I don’t consider it preaching to inform cafes that they are contaminating their carefully prepared GF food by having it on the bottom shelf. That’s a simple piece of information that will save someone finding pastry in their salad. If we want to make our GF world a safer place it’s our job to inform and make it that way.

    My disease is not an embarrassment or a secret. It’s something that challenges me every day. I have to eat to survive, and I won’t do that cowering in a corner. There’s a beautiful world of food out there without nasty grains. My disease and I will sit in the sun… but not for too long.

    ps – auto correct makes me say celiac quite often (even though I have the english version of english), we spell it with an “o” where I live as well. It’s not that I can’t spell it, the computer just knows best sometimes.

    a reader Reply:

    This was also nicely put Vicki, but some coeliacs are having a hard time due to the amount of people starting to avoid gluten as a trend because they believe it is bad for them (“poison”), without actually knowing what gluten really is or having coeliac disease. I live in inner city Sydney and am constantly confronted by shock from hospitality staff when I ask whether they can use clean tongs or a napkin to remove a gluten-free cake. They say with great surprise, “are you *that* intolerant?” and it’s become 100% clear that actually, it is very important for people with coeliac disease to talk to hospitality staff, not just to let them know about cross-contamination issues now, but to confirm that for some people, this isn’t a casual experiment.

    The more people who casually avoid gluten and let’s say they talk about it and say “oh, well, I just feel better, you know? Gluten is so bad for you, it’s such a poison, my friend said this and that” to hospitality staff while completely ignoring all issues pertaining to cross-contamination or indeed any consistency with their gluten consumption – this is obviously really really confusing to food industry workers (because they constantly tell me so).

    I had a long conversation with a guy at a pizza place the other day – we really validated each other actually. I explained how now, many places offer a gluten-free base because it is trendy, but when you ask if the topping is gluten-free, they don’t know; they may even say something like, “it has crustaceans..” Or places suggest something is gluten-free because they realise it is a good marketing tool suddenly but again it is quickly revealed that they really don’t know what gluten is, and imagine it to be wheat. The problem is that not everyone who is now avoiding gluten because it is “bad”, has any idea what it is. In fact, many don’t. And many continue to consume gluten alongside their gluten-free product, whenever it suits them. For coeliacs who have laboured for years to communicate the importance of real gluten-free food due to a serious medical condition, this kind of trend – and this would include misinformation associated with the trend – actually poses a considerable threat.

    I now ask people who are eating something gluten-free why they’re doing it. Most express surprise and then admit they don’t actually know what it is but they’ve heard it is bad. So, I go out with my friend and he’s eating the biscuits they’re serving free at the cafe with the coffee without a second thought; but then he orders the gluten-free toast. If they were to ask him if it needs to be grilled on foil or toasted separately or anything like that, he would almost certainly say “no” and it wouldn’t even occur to him why they had asked.

    This pizza place guy, god love him, when people order a gluten-free base and he discovers they’ve ordered the likes of cabanossi on it, theirs containing gluten, they will actually call back to advise the person. Most were not happy to go without their sausage… Certainly at least one person who ordered the gluten free base said it was fine and asked what gluten was. I have had several people now express confusion and frustration over the issue. Luckily this was a man who was determined to understand. The effect other people admitted to was: well, it doesn’t really matter. This is a trend. The person thinks gluten is “bad” but clearly has no serious medical response upon eating it. This is a lifestyle preference and choice; not the management of a serious allergy.

    There is a difference between intolerance and allergy and as you correctly point out Vicky, it is an autoimmune distinction.

    I’m lactose intolerant; I’m never going to have any kind of serious complication as a result of that. I had best avoid it; but I often consume lactose and deal with the consequences because milk is yummy. If there was a group of people who got really really sick if they had any milk, I would think twice about my communications with people about avoiding it.

    a reader Reply:

    to clarify, when I’ve said people expressing confusion and frustration over this, I mean people working in the food industry.
    Also note that cross contamination is an extremely fiddly business. I can completely appreciate that no one wants to do it unless it is absolutely necessary. And if food workers develop an apathy, even if you try and chat to them out the front, you don’t know what’s happening out the back. It used to be that they just didn’t understand and you could explain, but now they think they know and they don’t care, because they’re over the ideas in this article that, oh ok, I am going to demand that you are extremely fiddly with that food because I’ve heard gluten is bad, mmkay, and I don’t want to die from it.
    Therefore – there are and will be increasing amounts of frustrated coeliacs over this issue – just as we started to be taken more seriously with the progression of the gluten-free foods industry and more public awareness – BOOM. Blogs like this. No one has the right to speak for all people with AI by the way! People with different autoimmune conditions have different diets, as is suited to them and their condition. We are not a big blob of impaired immunity on a paleo diet. Although I’m sure that most people faced with autoimmune conditions probably do try to alter their diet to see what happens.

    Sam Reply:

    Wow, I honestly can’t believe how serious gluten can impact on someones life. This article has most definitely opened my eyes up that’s for sure!

    [Reply]

    Christal Reply:

    Thanks for posting this Sarah! It is great to read new developments and understandings on gluten and to be able to share your article with friends and family. I have been gluten free now for 15 years! It was the best and most important change in my life. All through my teens and early 20s before I switched to this diet I was so incredibly malnourished and sick. After I switched to a gluten free diet my health improved so much and people who hadn’t seen me for years didn’t even recognise me! Recently, we discovered my father has Hashimotos and I have been researching the link with gluten. Please continue to write about your own experiences. Thanks!

    [Reply]

  • http://www.veraandrose.com Erin Devey

    When I was finally, medically diagnosed with coeliac disease, I was embarrassed to say ‘Oh, do you have anything GF?’ at restaurants etc. I did not want to be ‘one of those people’ who really are a pain! I braved my first restaurant and quietly asked about their GF options. I ordered thinking ‘ok, this might not be so bad’. I began eating my meal and within minutes had a blinding headache and had to excuse myself to throw up in the bathroom. The waitress came over while I was organising a taxi home (there was no way I could drive!) and said ‘oh, sorry-I gave the Gluten Free meal to that lady over there’….great start! I still avoid asking unless necessary-so many places have such good options now but there is always someone squawking about how ‘intolerant’ they are and how they ‘feel better’ when not eating whatever it is they have decided on-all the while eating things that contain gluten…drives me nuts!!!!

    [Reply]

    Joey Thomas Reply:

    With some intolerances it’s all about the quantity of the ingredient. I have fructose malabsorption and there’s a HUGE list of foods I have to avoid. Many of them are fine if kept under a certain quantity, but as soon as you eat too much then symptoms start to emerge and it’s not fun. I’m allowed to eat (not all types but a fair selection) but I’m not allowed to touch juice or dried fruit – due to the increased concentrations of fructose..

    Wheat is another big one. It has fructans in it (chains of fructose with one glucose molecule on the end) which is fine in small amounts (such as in soy sauce, mayonnaise or even a dusting of flour on some fish) but in larger doses it’s a big no go.

    Celiac desease is much different in that you have a spec of the stuff your body goes into immediate meltdown. Both illnesses have their own challenges and it can be hard to understand why someone says they avoid wheat but still eat it.. but they’re different illnesses. Sometimes I wish I had cealic instead of fructose intolerance as everyone knows what gluten IS these days.. fructose malabsorption is still so foreign to most people.

    Anyway I hope you’ve tried eating out again. That’s I really horrible experience I can definitely relate as I often discover that my food was laden with onion despite specifically saying I can’t touch the stuff. All the best with it all. It definitely gets easier over time.

    [Reply]

    a reader Reply:

    The whole thing about coeliac disease, Joey, is that it is NOT an intolerance. It is an allergy. This is why coeliacs like me get very frustrated with exactly what Erin describes above. People with coeliac disease cannot consume ANY gluten. It kills the cilia which are like little tentacles that line the gut. This is an allergic autoimmune reaction and completely different from any intolerance.

    I completely get the fructose intolerance thing by the way; even thoughts about choosing. It gets worse though: you can have both! I would actually agree that it can be harder finding a place that has food with no onion in it sometimes than a place that is guaranteed to have gluten-free food (this is highly variable) – but what is really tough is finding somewhere that has both! By the way people don’t really seem to know what gluten is, strangely enough, they just know the word… try asking someone next time.. people kind of thing it is “wheat” – this is a similar problem to people presumably not understanding that fructans could occur in foods that are not fruit. I have attempted to ask for food with no onion but I never tried to explain anything about FODMAP because it seems rather complex and also because I suppose for me, I have no choice but to discuss the gluten thing. Onion is just… different. I try to avoid that too, but they’re not the same, as a coeliac I am afraid of gluten contamination because of my immune system, and with fructose intolerance, I just really don’t want those gastro symptoms. That’s no small thing by the way – I used to get intractable nausea and vomiting. But I think it’s worth clarifying – particularly in this kind of context. Give a fructose intolerant coeliac onion any time :S

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  • lucy

    Love these posts, keep it up!

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  • Courtney

    Great article, thanks for sharing more information on this. My mother is celiac and I have suffered similar symptoms as her for years. Whilst staying with her last year I finally took the plunge into gluten free living and have noticed a huge improvement in my health and wellbeing. I no longer have a hugely bloated stomach, stabbing stomach pains, nausea and dizziness. Getting the Celiac diagnosis is a frustrating process and can take years to get a positive result. Dr’s constantly toy with IBS being the reason, but I feel that is a cop out diagnosis. I would rather be healthy and happy now. IQS has also helped a great deal – I had a gluten and sugar relapse on the weekend after a few drinks and felt awful.
    So thank you for another food article, made my morning! :)

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  • Robyn

    I can’t help thinking Mia wrote that article because she thought she was being funny and to generate a reaction.

    I am sure if Mia or one of her kids had to run to the toilet every time they ate a sandwich or a bowl of pasta, she wouldn’t be quite so dismissive of intolerances.

    I do think, as you keep saying Sarah, that we can’t be preachy about things.

    I am quietly proud of the fact that I have quit sugar (and love it). I am almost certain I am gluten intolerant (a very recent and surprising development – obviously the years of build up that Sarah has just written about).

    If people ask, I tell them. Otherwise I just keep it low key. I don’t want to be a bore.

    Mel – if you are an original Sarah follower, this food focus must be hard for you! Hang in there – the 8 weeks is nearly up! (I hope we still get plenty food posts though)

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    Robyn Reply:

    Replying to myself….I should add that we have friends who are severely celiac and we take this very seriously. They can talk about that all they want as far as I’m concerned because the disease really is life threatening and their diagnosis (1 adult and 3 kids in one family) has been life changing.

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    Mia Bluegirl Reply:

    Ick, having to talk about this stuff squeams me. It’s fine to talk about here in a like-minded community where I am relatively annonymous and most other people have AI, but to my closest friends it is so much harder. Mostly because I haven’t quite sorted out my own feelings of shame, sadness, depression etc around being a Sick Person. I think I like the illusion I have when I am with them that I am not a Sick Person.

    Also, how do you even start that conversation? I have no idea how to explain how I can get really sick very suddenly, mostly be fine, but still have occasional days in the middle? Even I dont have answers to my questions, so how can I answer their questions? I dont want them to worry or treat me differently. So when I start the thought process of how to get around this in my head, I get so conflicted I wind up not telling them.

    Any advice, Sarah/ Robyn or others, on coming out of the illness closet so to speak..?

    (And yes, I am travelling to an international music festival with 8 close friends, I might be the luckiest woman alive!)

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    Mia Bluegirl Reply:

    Woops sorry Robyn, I meant to reply to YOUR reply a few comments down! Crap crap crap, I’ve just completely confused myself. Sorry about that. :)

    Robyn Reply:

    Don’t worry Mia, I knew what you meant!!

    I wonder if you could perhaps get the two friends who do know to open the conversation by telling those who don’t , and then taking it from there?

    When our close family friends were diagnosed as coeliac we were relieved because it explained their poor health and severe symptoms, and since the diagnosis the three kids have really thrived. It also meant that when we feed them we are not unknowingly damaging their health!!!

    It is crazy to feel shame or sadness or depression (actually depression might be understandable) about this – you did not choose to have these conditions, but you have to live with them.

    One of my favourite sayings is ‘scratch the surface….’ – you may find when you open up that conversation that some of those around you have their own issues that they have never discussed.

    However you go about it, I am absolutely certain that you will get nothing but love and support from your friends.

    Look at Sarah – she is so open about her issues and I think the love just pours right back at her!

    Emily Reply:

    Mia, I wish I could give you a great big hug!

    There are so many “Sick People” around, it’s just that a lot of us are hidden, either by choice or because our functioning isn’t so great and we are forced to hide to conserve our energy levels.

    I also went through a period of shame and blaming myself for being unwell. It takes time to resolve that and occasionally it comes back but I now know I am not to blame and neither are others who are unwell (unless of course they took known risks like excessive drinking and smoking).

    I think you should feel comfortable coming out of the closet to close friends but do be mindful of potential employers finding out – the industry I was in, everyone knew everyone and there was a big blur between professional and personal especially on social networks like Facebook. I do think that people with an illness have to be careful of who they divulge the information to – it’s the unfortunate truth. I have often thought of pasting a message on my FB wall to all and sundry to be completely open about it, but not ready for that just yet – maybe when I am functioning better I will have more courage!

    You may want to join an online group for support – some of them are wonderful. But I find it’s important to balance that with plenty of “real life” activities because being unwell is not all that we are.

    I am pretty open with my close friends and I keep a blog (sadly neglected of late) so I think even people who aren’t close to me know I have health challenges. I have a core group of friends who are amazingly supportive and don’t question me. I did go through a period where I talked about it a lot but now things are settled and I’m better diagnosed I’m getting on with life and there is much more going on than just this health battle.

    Be kind to yourself, don’t blame yourself and remember that you have inherent value as a human being regardless of what life has served up to you.

    a reader Reply:

    Aw.

    Interesting thoughts.

    Coeliac disease is a massive hassle but it can be controlled for almost all individuals through a gluten-free diet. And Jason Tye-Din, an Australian, has actually developed a coeliac vaccine. Apparently most coeliacs (myself excluded, but I have multiple other chronic illnesses going on) feel much better on a gluten-free diet, and I think in this sense, many coeliacs are not really considered abnormal in certain contexts (except certain restaurants… blahhh..) because they are not being struck by the up and down levels of being unwell that you’re describing. I’m taking it we’re talking about something other than treated coeliac disease.

    These are great questions though. I had to wrestle with this yesterday, I will have to wrestle with it tomorrow – I”m not well at the moment and I have the chance to catch up with a friend for the first time in a long time. I had to cancel yesterday. Now I have been unable to get any sleep. I have found that I’m very awkward about it when I really want to do something, because I want to let that person know I’m not simply disinterested, but that involves revelations about the medical scenario of some form or another, and even when I don’t want it to sound “heavy” to people, apparently it does anyway. Furthermore, I find that many people will understand one or two cancellations, but more than that in a row, and the invites simply dry up, even if you have laboured to explain that you would love to be there. Which makes me start to think that it is being honest itself that is as offputting as cancellation. So then I try being more guarded and vague with newer people; and they inevitably seem to think I’m just not that enthusiastic. I start to think sometimes that if the few people who understand get it, then maybe other good people will; but sometimes when health conditions are brought up, people just get a funny look on their face; they’re not trying to be uncaring but for some reason they find it unbearably awkward.

    Well, I can see just below Mia that you have PCOS (snap – just diagnosed :/), Hashimotos (likewise – both were a long time coming though – my TSH currently normal so although I have lots of hypo syndromes as well as anti TPO antibodies (if I got that right, it could be lots worse) AND coeliac disease. Plus a bunch of other stuff I’m not even going to go into. I will say that managing more than one condition can be very challenging. I also must say I’m glad my thyroid isn’t worse at the moment and although certain PCOS symptoms are unpleasant and frankly a bit devastating to my self esteem (luckily weight isn’t a thing) and I think the gluten-free diet sucks, it is at least a treatment and more widely available now. I think fullblown Hashi’s sounds the worse, because people seem to report a lack of consistency between TSH score, levoxythyroxine treatment and symptomology and you can have so many different symptoms with Hashi’s. Also the fact that you have to take a pill for life – which I don’t yet, my thyroid hasn’t been attacked enough yet – says the endo – yaaay touchwood – although I would probably do that for CD – and I will be all over this vaccine. I was told for PCOS I’d have to be on Diane-35 for life, plus spiro for a while – would have been nice if at least one doctor warned me about the DVT. So, sometimes it’s not just juggling the symptoms but all the management: the meds, the side effects of the meds, the diet, and especially for women when it comes to social engagement, although not to exclude men, the cosmetic effects of chronic illness. There are many days when I look in the mirror and I just look ill – so drawn, and sort of… old. My eyes are permanently bloodshot now, my skin is always a mess and my hair is falling out. This has stopped me from getting in the mood to go out plenty of times – when you feel dodgy and you’re in your bathrobe, that glance in the mirror when you’re trying to decide if you can handle it can be lethal. But often you feel so much better once you make it out.

    But I can see your comment below – I wouldn’t consider anyone a “best friend” if I can’t tell them the most basic thing about how I really feel. Also, for me, I’ve had 5 endoscopies now and I don’t think it’s that invasive relatively speaking. And trust me, I’m a fusspot. I’ve had a colonoscopy and that is really the bowel. You have to drink Picoprep for that and you don’t want to know what that makes you do. Endoscopy, nothing like that. You are put under so you don’t remember either procedure, or shouldn’t. It’s not like you’re aware of the camera, which is going down a tiny tube while your throat is relaxed. It’s not your lower intestine. That would be your large bowel and that is not accessible in this way. It’s a small bowel biopsy. The reason people should get tested if they have any suspicion is borne out by the fact of what you mention – some people have few symptoms. And you can think you’re following the gluten-free diet, when you’re actually not. There are screening tests prior to the biopsy such as blood and genetic testing. I wouldn’t discourage anyone, ever, from having an endoscopy. I really don’t think it’s that major. It’s over quickly and I’ve never had any nasty side effects. For a coeliac diagnosis, it’s worth its weight in gold.

  • http://deliciouslyorganic.net Deliciously Organic

    Thank you for such an insightful post. I too have Hashimoto’s and have been treating it with diet. A gluten free/grain free diet has done wonders for me and my health. My disease is reversing and I couldn’t be happier. Keep the information coming!

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  • http://www.problogger.net Darren Rowse

    great explanations – really appreciate it having wondered about it over the last year or so. Appreciate you taking the time to give this great overview.

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  • Mia Bluegirl

    Very well said Sarah! That was amazingly conclusive. In future when friends ask I will just send them here.

    Three things I want to point put about celiac disease testing. Firstly, the bowel biopsy is serious surgery and I found it very invasive. They insert a camera down your throat all the way to your lower intestine while you are anesthetized. Some people just avoid gluten based on their intuition from symptoms they have. I really don’t blame them!

    Secondly – I was seriously celiac for YEARS and had few symptoms. I just didn’t eat enough to notice. But the damage that showed up on my bowel biopsy was still extreme even without symptoms!

    Thirdly – having to go on a high gluten diet for the biopsy made me really sick. As in, toxic bowel infection involving emergency rooms, hospital stay, 103 degree fever and talk of surgeons removing my bowel. Mia, if you are reading – do you buy that this is serious now?

    My grandad had celiacs and diabetes. My mum has Hashimotos and PCOS. I have Hashimotos, PCOS, celiac, colitis and a couple other complications. And I have yet to mention it anywhere other than this blog, unless people ask first. In fact I am going travelling in 6 weeks with my 8 best friends and only a couple of them know, not really sure how to bring it up.

    On the whole, I was really disappointed in Mia’s article. There are enough willfully and deliberate ignorant people in the world without journalists joining in. The world is a worse place having that piece of writing in it, and its not as if doing a little research is hard. Especially when its your job.

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    Robyn Reply:

    Mia as a side note – you really should tell your friends. If they are besties -8 of them? you are a popular girl! – then they will want to totally support you on your travels. You don’t want them to just think you’re a fussy eater and end up in hospital!

    You have a long list of health issues and it would be really unfair (almost irresponsible, surely?) not to let your friends know, because there will be implications when travelling.

    Its amazing you have kept quiet about it for so long – I guess articles like Mia Freedman’s don’t help the cause either.

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  • Amanda

    Hi Sarah, thank you for such a thorough explanation – not sure it was just serendipitous that I had sent you an e-mail yesterday on this very subject!.. so now I know better than to continue to ingest just those little bits of gluten I keep being tempted by and thinking it is ‘just an intolerance’ nothing more sinister…

    I do worry about my 10 year old daughter who loves her bread… and is such a fussy eater that a lot of alternatives just wouldn’t cut it

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    Amanda Reply:

    It would be great if you could also look in to the gut brain link and how it relates to depression and behavioural issues

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    MirandaBB Reply:

    Good suggestion Amanda. I second that.
    I’m pretty sure I’ve read (but can’t find the reference) that your gut and brain derive from the same cells. So it would make sense that food & mood go together!
    Some resources… Gut and Psychology Syndrome: Natural Treatment for Autism, ADD/ADHD, Dyslexia, Dyspraxia, Depression, Schizophrenia by Dr Natasha Campbell-McBride; http://www.biobalance.org.au/ and http://www.nutritional-healing.com.au/content/home.php
    BTW, thanks for WSJ article link Sarah – very good!

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    Amanda Reply:

    Hi Miranda – A Bio Balance doctor has saved my life – literally as I just don’t respond to anti-depressants. I also had a very insidious microscopic parasite which I had erradicating my gut lining for years (resulting in leaky gut syndrome) and is difficult to detect. So I am tring to correct that

    My psychologist explained to me that when an embryo is forming it’s brain and gut are linked together, eventually separating as the embryo develops but staying connected by the Vagus nerve and in effect the gut IS a secondary brain. It is also a simple explanation of why we should trust our ‘gut’ feelings from our secondary ‘brain’.

  • http://econest.blogspot.com Maria Hannaford

    Well said Sarah. That is all.

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  • Lindsey

    Thanks so much for this. I felt Mia Freedman’s take on it was a little insensitive. I always feel a bit embarrassed to ask if something is gluten free or to tell friends who invite us over to dinner that I am a bit painful to cook for, but it’s just reality sadly! I’m lucky to have sensitive friends who always sweetly accomodate me and never question it. Sarah, I really appreciate the champions of this so thanks a lot. :)

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  • http://selmada.blogspot.com Selmada

    Thanks. I’m new to the gluten free world because of one of my twin toddlers, but the more I read the more I think it might help me too (I have hashimotos too but my thyroid is still functioning for now).
    I’m still learning and we’re still clearing out the kitchen. He has no official diagnosis, just the suggestion that going dairy free and gluten free may help his skin irritations and frequent chest infections. I’m more than willing to try it to help him without drugs, even though they are at that horribly picky stage.
    Your post gives me foder as people learn about this and come down on me for restricting their diet (we’re vegetarians so I’m used to some of the critisisms already)

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    Vicki Keast Reply:

    Hi Selmada
    Have a look at Dr Rodney Ford’s work on food allergies, ezcema and gluten intolerance. He has written numerous books, with the latest being on food allergies. He is pioneer in his field, and has been campaigning the gluten free way for over 10 years. His facebook page is gluten free planet (yes he’s that serious), and you can also find him on his website.

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  • Sarah

    I haven’t eaten gluten for 2 years, I know I am definitely intolerant to wheat but I am waiting to see my specialist about the biopsy test. I am really worried about it because of the 6 week lead up of eating gluten. I would like to know once and for all if I have Celiac or not, but the test seems so intense.

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  • http://svasti.wordpress.com Svasti

    I really felt that Mia’s article conflated several issues into a mocking/knocking “what’s wrong with you people?” tone that betrayed and misinformed her own Mamamia reader base AND further engendered ignorance on important health issues.

    If you read some of the comments to that piece, you’ll notice that Mia’s readers have this same ignorant attitude and wow, it’s a bit scary actually. So Mia missed an opportunity to educate her readers by doing a little research and passing on useful information. Gee, she could’ve even spoken to you, Sarah! Funny that she didn’t bother…

    So let’s see – she was mostly all about mocking people who talk too much about what they’re giving up and why. She thinks that some people make up their intolerances, and perhaps she’s right. There probably are people who lie about their diet to avoid eating certain things.

    But let’s think about it, even if they aren’t officially intolerant or living with an autoimmune disorder, they’re probably doing good things for themselves by avoiding gluten or sugar anyway!

    Mia also completely ignored any health related research and facts about changes in our diet in the last 100 years or so, and clearly she hasn’t read David’s book “Sweet Poison”.

    Instead she chose the great Aussie role of the “knocker”. Totally cutting people down for being different and choosing a healthier way of eating. Pretty uncool, really. Not to mention short-sighted.

    I mean, calling sugar a “food group”? Really? Like Sarah has written before, some people have a very intense response to the idea of giving up sugar, mostly because they are fiercely addicted to the stuff and don’t even know it. I’ve witnessed this myself, and no, not while preaching, just explaining what I’m doing to friends and why.

    So thanks Sarah. Your article here, full of commonsense and useful facts is a much saner piece of writing than Mia’s.

    Like you, I have Hashimoto’s and have cut gluten and sugar from my diet.

    I don’t talk about it unless I have to but I always tell people that I’m pretty easy to cater for: whole foods, no sauces on my meal and I don’t eat sweets. Some people insist on serving some kind of desert for me (like my sister), so I’ll suggest serving me blueberries and full-fat cream.

    The thing is that we are social creatures, and much of what we do involves food. In my workplaces, there’s a LOT of food-based socialising. So I tell the people who buy the food, and that’s about it. I also keep a whole lot of stuff I know I can eat at work (salads, nuts, coconut oil, macadamia oil etc) so I’m rarely caught out.

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    Erin Reply:

    The best part was when she reffered to sugar as a nutrient/ food group.

    Ha.

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  • http://www.inherentorganics.com Jenny Matthews

    What are well researched and informative article. Thanks.

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  • Katherine Kelley

    Awesome, awesome post. Thank you.

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  • http://naturopathfionahogan.blogspot.com/ fiona hogan

    Great informative article Sarah, well done.
    Just to add my bit, as a Naturopath, I believe that the world has gone mad in the over consumption of wheat – Wheat for breakfsast, lunch and dinner. Also, the wheat we eat is far more toxic than the wheat our grandparents ate, it is highly sprayed and therefore more polluted. In the incidence of intolerance, I believe as a start people could begin to reduce wheat and eat only organic or bio-dynamic wheat to help reduce the feelings of bloating and sickness. Yes that is intolerance only if you are allergic to wheat, gluten then that is another story and heed Sarah’s advice. Great article.

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    Kath Reply:

    Yes, I don’t have any issues with gluten ( I tolerate seitan, which is an Asian veggo meat substitute just fine). I limit my wheat consumption to one meal a day ( or less) though, as more than that sets off my PMT & sinus symptoms.

    My family is full of fair skinned, light eyed people with LOTS of allergies – my granddad was allergic to fragrances, my mum’s cousin is allergic to dairy. I agree, previous generations probably did have intolerances, but since the symptoms were things like dodgy digestion & sneezing & coughing, they didn’t associate them with diet.

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  • Jen

    Interesting and informative post, and a very appropriate response to the insular, uninformed and inflammatory opinions expressed by your former colleague.

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  • Carol

    Sarah, you have opened up my eyes to the links between what we eat and a multitude of illnesses. I’ve always been aware of the need to eat well and I am on Week 4 of the IQS (along with Febfast) and am feeling the best I have in years with a sense of calm and purpose that is as a result of your gentle, gentle approach.
    The main reason for the experiment is actually linked to improving the health of my family. My mother has been diagnosed with a rare form of Alzheimers along with being fructose, gluten and lactose intolerant and I can’t help but make a link. My maternal grandmother also suffered from dementia and I am working hard to reverse the pattern. I doubt that I would have made the links without your blog and today’s information about gluten intolerance has made an equal impression. All I can do is continue with the experiment and consider the role of gluten.
    Now I just have to perfect the response to people when they ask why. To me, this is deeply personal and is something that I can only share with those closest to me who understand where I’m coming from. There is nothing to lose by trying and if I feel as good as I do then there is no reason to stop with the experiment.

    All the best to you x

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  • Pingback: Gluten Questions Answered « Restricting My Kitchen

  • Lara

    Awesome, awesome post! Thanks Sarah. I resent the evangelist tag. It’s people’s health we’re talking about! What’s more important than that? I think it’s irresponsible not to share what we know, especially when authoritative mainstream information sources are so very flawed. I believe that the tides will eventually turn, but when? People don’t often realise the enormous political powers that food corporations wield to prevent such change. How many of us are content to wait 10 years for the Heart Foundation and similar organisations to realise that our accepted food pyramid is dangerously flawed, and get on board to save our health? Sure, I know I annoy some people. I share posts like this on Facebook, where people can choose whether or not to read them. I’ll be sharing this one. And this one: http://bit.ly/yilxIG . I tend not to say anything to people unless I’m directly asked – and then I have a lot to say. But for every person I might annoy, there are 2 that I inspire. They may not be ready to change yet, but often the thought niggles. It niggled at me for 2 years until I got sick enough and desperate enough to go to what I considered extremes at that time (in giving up sugar and gluten). Since then I’ve lost 17kgs, but more importantly I’ve lost the debilitating depression and exhaustion that had plagued me for years. I feel comparatively amazing and there is no way I will EVER go back to the SAD diet I used to consider normal. Am I an irritating evangelist for wanting to share what I have learned about how most people can improve there health and ergo their lives? If so, then I will gladly accept that and continue on my happy, healthy way. I’m not sprouting anything I’m ashamed of!

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    Svasti Reply:

    Agreed! At least two of my friends have been inspired to quit sugar after telling them what I’ve learned…

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    Jessica Nazarali (@JessicaNazarali) Reply:

    Hear hear Lara!

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    a reader Reply:

    coeliacs tend to put on weight after finally being diagnosed and sticking to a gluten-free diet. just saying. gluten avoidance is not for weight loss if it is actually having the effect that makes you ill that Sarah is arguing it does.

    Yep, as a coeliac a gluten-free weight-loss post would annoy me.

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  • Sophie

    Great post. I really don’t understand why other people even care. It’s each individuals choice what is put in their bodies. Whether they have an allergy, intolerence or simply choose to not eat a specific food.

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  • http://holistichealingandcfs.wordpress.com amy

    Great post. It is so true actually being diagnosed is a lot harder than it seems. I am sigA (first defence of the immune system) deficient which means its basically impossible to test for celiac. This is quite common for people with immune/auto immune disorders (I have CFS.) A couple of great reads are http://www.amazon.com/Dangerous-Grains-Gluten-Cereal-Hazardous/dp/1583331298 and http://www.direct-ms.org/pdf/EvolutionPaleolithic/Cereal%20Sword.pdf. I never realised how serious gluten intolerance really was, recent research seems to be setting the record straight. Nora’s book also has some great info as well! Thanks so much for the post!

    [Reply]

    amy Reply:

    oh and check out this ausome blog by a medical doctor http://primalmeded.com/!

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    a reader Reply:

    Blood tests are used only to screen for coeliac disease: they are not diagnostic. You can have false positives or negatives either way. You can be tested for genetic markers which are another screening measure. If you don’t have those markers, CD is unlikely. However, the actual test for coeliac disease is to eat gluten and then have the cilia in your intestine checked by biopsy via endoscopy. In other words, there is actually no problem with you being tested for coeliac disease. I came up positive on both the blood tests, but they are not used for diagnosis, only screening. Please get checked for coeliac disease (which is not a food intolerance, but an autoimmune system and allergy) if you think you may have it.

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  • Steph

    Thankyou Sarah so much for this! I have hashimotos too and while my blood test came back negative for coeliac, cutting out gluten has helped me enormously in so many ways (both with my hashimotos, energy levels and in other areas I didn’t even know weren’t normal). Before this I have always happily been the person who would eat anything and I hate the fact that I am now “difficult”, buy you’re right once the scales have been ‘tipped’ there really is no moderation when it comes to gluten, you just have to cut it out. But really, whether its gluten, sugar, dairy or whatever, if people are choosing to do something to improve their health why does that tend to cause so much judgement and nastiness? Each individual knows what works best for their body and if only we would listen more then maybe we would all be healthier. For people that say intolerances weren’t an issue a generation or two ago, well cancer and in particular Type 2 diabetes were no where near as big an issue either!

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    a reader Reply:

    Steph, it is possible that your blood test could come back as a false negative. It can happen.

    As to why people may comment on or judge what seems like random avoidance of a food matter by some people because they have read it is “bad”, eg “poison”, rather than for any rhyme or reason (without commenting on you personally) – you can see elsewhere why both coeliacs and those who work with food may find this troublesome.

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  • mon moore

    thanks Sarah for the research and info – a great round-up

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  • jacquie

    thank you (:
    thank you (:
    we have found out the hard way the link between gluten, fructose, lactose & the range of autoimmune diseases our family suffer. our goddess is the brilliant australian sue shepherd who has campaigned actively to educate the medical fraternity of this link. she is author of practical, useful cookbooks that we rely on. we must speak out against multi-national behemoths who have indoctrinated the western world to erroneously rely on gluten, fructose & lactose to sate our nutritional needs.

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    a reader Reply:

    Sue Shepherd is cool. But… who exactly are the multinational behemoths that have indoctrinated people to eat … what they have eaten for centuries? Wheat, for instance, has been a staple of civilisation – it actually allowed civilisations to flourish in the first place because people could stop hunter-gathering and start farming. Sure, we live in late capitalism but gluten was hardly invented by a corporation. I think you will find there are very few foods that do not contain gluten, fructose or lactose. Some people avoid other things, such as soy, crustaceans, egg and often more seriously, nuts. Is one intolerance more politically incorrect than another?

    Seriously though – which multinationals? I”m curious.

    [Reply]

  • http://www.livehealthysimply.com Jessica Nazarali (@JessicaNazarali)

    Thanks for a great follow up article Sarah. I rarely talk about what I do and don’t eat, which was why I decided to started my blog – I wanted to connect with people who had similar interests to me. When people ask why I am not eating cake, I tell them but I don’t exactly enjoy telling them..well most of the time. People do want to catch you out or interograt you – “why are you on a diet you are already skinny”. I’m not on a diet – I’m choosing to eat healthy but that response isn’t suffice for some reason?

    [Reply]

    amyer Reply:

    I have the same reactions.

    “You don’t need to worry about what you eat” is one I often hear. Uhh don’t we all?

    [Reply]

    eve Reply:

    Me too – even though I explain my health issues (after being quizzed) they seem to focus only on the weight loss – oh you are so skinny, you looked much better before, you look terrible now yada yada yada. We are a society obsessed with weight. And they say WE are the boring ones, hey Mia??

    [Reply]

  • Elizabeth

    Thank you, Sarah, for explaining an incredibly complex condition in such an easily digestible (no pun intended) way. As a Naturopath, I often find it difficult to explain tricky conditions such as Coeliac Disease to my clients in ways that are easily understood. In future, I shall refer them to your website. Thank you again!

    [Reply]

  • erica

    Mia Freedman, ugh.

    Thanks for the well-thought out reply, Sarah

    [Reply]

  • http://www.thesummerhouse.blogspot.com Jana Miller

    And if you still aren’t convinced, look at the wheat belly blog or the book. Both are a wealth of information that will show you that wheat isn’t what it used to be. And even though the govt tells us to eat more, we are all getting fatter and more diabetic!

    And wheat is an appetite stimulant and crosses the blood brain barrier just like some drugs.

    Start noticing if you are hungry 2 hours after eating something with wheat in it. It makes us hungry and the processed food manufacturers sell more products…hmmmm.

    I don’t miss it very much. I just bake with almond meal from trader joes :)

    [Reply]

  • Lou

    Hi Sarah

    Being a nurse I am well aware of how horrible autoimmune disorders and celiac disease are, and how gluten makes people with celiac disease sick. If you were only writing about the risks of gluten on people who suffer from these disorders/disease you would get my full support. However to apply this information to everyone is really concerning as your information is not based upon critical evaluation of all the research.

    The National Health and Medical Research Counsel of Australia develop health guidelines based upon the best scientific evidence available. The process used involves critically and rigorously evaluating research using a 9-step process. For research to be included the research must meet validity requirements and statistical significance. Evaluation of the research and the development of guidelines takes a long time and much resources to undertake. Additionally, the NHMRCA are an independent body, which gains no monitory benefit from their recommendations (unlike the Health Foundation).

    In regard to the NHRCA Dietary Guidelines for all Australians, the guidelines make recommendations about the types and amounts of foods we should eat, as well as food groups and dietary patterns. The aim is to:
    ▪ promote health and wellbeing;
    ▪ reduce the risk of diet-related conditions, such as high cholesterol, high blood pressure and obesity; and
    ▪ reduce the risk of chronic diseases such as type 2 diabetes, cardiovascular disease and some types of cancers.

    The dietary guidelines are now under review and the draft is available from
    https://www.eatforhealth.gov.au/sites/default/files/files/public_consultation/n55_draft_australian_dietary_guidelines_consultation_111212.pdf
    They were open for comment if you want to question anything.

    Basically the new recommendations (based on the best available research) show that we need to eat double the amount of vegetables and fruits; double the amount of wholegrain cereals; much more milk, yoghurt and low-fat cheese; and increase our lean poultry and fish intake.

    The review of the research has also shown there is stronger evidence supporting the benefits of fruit particularly for cardiovascular disease; that there’s increasing evidence that consumption of sugar-sweetened drinks is associated with increased risk of weight gain; and that the consumption of milk is associated with decreased risk of heart disease in some cases. There’s also really good evidence now about the association of whole grain products and decreased risk of heart disease, excessive weight gain and also decreased risk of type-2 diabetes.

    I am not sure how you can feel qualified to provide information to the contrary as their examination of the research is pretty un-refutable. Please, please make the effort to learn more about critically evaluating the research. You have such an influence on so many people and I know you aim to do no harm, however I feel you may just be doing this.

    (PS: I know that gluten makes people with celiac disease sick so I think and I think it is great Sarah is providing information for these people.)

    [Reply]

    Erin Reply:

    I totally get what your saying.

    But…

    People FEEL better when they are gluten and/or grain free. Their health changes.

    I think it’s more important to listen to your body rather than NHMRC.

    [Reply]

    Stephanie Reply:

    Thank you, Lou. Disclosure: not a health researcher, but I do feel that Sarah’s presentation of evidence is lacking in solid support. It’s a strange world where a “large” study contains about 100 participants, 39 of them controls. (Of course in medical research samples are often small, statistically speaking.) I’m also curious as to why she mentions a review study in the New England Journal of Medicine, but doesn’t provide a link to that one (the links she provides are to generally less-credible sources), or a specific reference (likewise to the study comparing the blood of 10,000 individuals from 50 years ago, etc.). It’s all a bit odd and seems to speak to 1) trying to provoke; 2) proseletyzing, in spite of the disclaimer at the outset; or 3), more worrying, an impatience with writing a properly annotated piece (I know this is a blog, but she’s attempting to cement her credibility on the topic by at least mentioning weighty journals). I’ve been interested in this discussion to this point, but this is the last post I’ll read. I’m not in any way saying that gluten intolerances don’t exist, etc., etc., but the way in which this info. is being presented in this blog is disconcerting. Take care, all.

    [Reply]

    Tania Hubbard Reply:

    Hi Stephanie, I have been working in the field of research and food development for 9 years – gltuen and grain free. I do agree, the way we quote research and use it in our day to day discussions is very important. It is easy to find references and quote them without fully understanding the entire research thesis or its findings. There is some fantastic research out there – Bill Giles is a well respected researcher and author. Practitioner. He has more than 20 years working in this area. He works in Canberra. I would recommend anyone reading his papers, research articles. They can be a bit heavy going. If anyone would like to read more about gluten and grain free – gluten, lectins etc. Go there, find out for yourself. Take care Tania

    [Reply]

    Tilly Reply:

    It depends on who you believe. I think it’s a bit naive to just trust the people doing the research. How often do we find that so-called experts are being paid by the ‘authorities’ that have the most to gain ie: Rosemary Stanton in the employ of the dairy corp (she said it was OK for lactose intolerant people to drink a glass of milk a day – I think not!). We need to be vigilant and take heed of the many ‘conspiracies’ that have already been uncovered – the tobacco industry (smoking was once promoted as being healthy); MacDonalds; drugs for cholesterol that are destroying peoples lives. It’s pretty cut-throat out there – sadly – and we shouldn’t just read a report and take it for granted that those doing the research are honest and true.
    It’s sad that this is the way of the world. I’d rather trust people like David Gillespie and Dr Ronald Ford and Sarah – at least we can see their agenda.
    Everyone I’ve ever spoken to – Coeliac or not – who has cut gluten (and sugar) from their diet has commented on how much better they feel. That research I CAN trust.

    [Reply]

    Elenor Reply:

    Lou: “reduce the risk of diet-related conditions, such as high cholesterol,”

    You absolutely undercut any ‘validity’ I (and many, many people) might attribute to your objections here — because you make it clear that you only know (or only follow) the standard “Big Pharma”-sourced misinformation about the effects of “high cholesterol.”

    Start with these and get educated (you readers, not the nurse — whose livelihood may depend on following the money…):
    Dr Mike Eades:
    http://www.proteinpower.com/drmike/statins/the-pitiful-state-of-medical-ignorance/
    http://www.proteinpower.com/drmike/cardiovascular-disease/you-bet-your-life-an-epilogue-to-the-cholesterol-story/
    Dr. Kuirt Harris:
    http://www.archevore.com/panu-weblog/2010/7/21/statins-and-the-cholesterol-hypothesis-part-i.html
    http://www.archevore.com/panu-weblog/2011/2/14/a-quick-post-on-fh-and-statins.html

    Oh, and p.s., Why would (and why would you support) food guidelines for *diabetics* — folks who have a dangerous medical problem dealing with blood glucose — recommend eating lots of “wholegrain cereals and fruits,” which are turned immediately into … guess what?!? High blood glucose?! Why would you recommend that type of damaging food to someone who struggles with high blood sugar?!

    “Please, please make the effort to learn more about critically evaluating the research.”

    Yeah, right back atcha!

    [Reply]

  • http://nellbe.com nellbe

    I do like the way you tell your side of things. I also felt the need to reply via a post on my blog on Monday. Little disappointed on two things here though, 1 is that coeliac disease in Australia is spelt with an ‘o’ and 2. there are plenty of just as awesome aussie gluten free tweeps plus me. @GFScallywag, @MMOAGFL, @ZucchiniBikini, @vanessaridel, @TarynRucci to name but a few.

    [Reply]

  • Dharma

    Hi Sarah,

    Really disappointed to read Mia’s post today. In all honesty do you really believe this has anything to do with the subject matter or is she just trying to up her traffic by taking a dig at you?

    Seems to be the competitive nature of magazines is alive and kicking in some people still.

    Good on you I say, you have the integrity behind your subject matter and an audience you value everything they are able to learn from you. I have Hashimotto’s and this is about the most informational place I have found. Drs etc really aren’t experts in this area, its just another diagnosis to them!

    Keep up the good work,
    xx

    [Reply]

  • picardie.girl

    I see what Mia was trying to do – I love her site and read frequently – but it did irk me. Something about it just felt… wrong. I feel that I sit in an awkward place here… not coping as well with eating such things as a regular person, not completely AI or coeliac. I don’t feel ready to be as militant as you, Sarah, or many of your readers – but neither am I sold on the current status quo diet including all things like bread, milk, etc.

    I guess I’m saying that I’m trying to take the leap. And if more people jumping on board this ‘fad’ and deciding that they need to go off gluten and sugar makes it easier for me to do so, then despite the fact it may all seem bullshit to most people, and annoy people with legitimate allergies, I’m behind it.

    [Reply]

    a reader Reply:

    Really? People with legitimate allergies – so… life isn’t complicated enough by having an autoimmune disorder to manage without having to deal with the complications of people avoiding gluten as a trend because it’s poison, without knowing what that is?

    “Something about it just felt… wrong.”

    If you have problems when eating things, you have problems. There’s no such thing as being incompletely coeliac. You could have other issues – for instance, as someone has pointed out elsewhere, if you’re sensitive to wheat, that also contains fructans, not just gluten. You may not have actually had the right testing for coeliac disease, as there seems to be something of a myth going round in the comments that it’s diagnosed via a blood test.

    If you get diagnosed with coeliac disease and know that cross contamination could deeply affect you for real, as opposed to it’s-all-poison… then people jumping on this bandwagon are liable to annoy you too. For real. Just saying. I hope though that you won’t have to join our bandwagon and that you may find out what is causing you problems – being alone with symptoms and no diagnosis is an awkward place to be, and I’ve totally been there.

    [Reply]

  • Chloe

    Great post! I know that some people are getting frustrated at how much health/nutrition stuff you’re putting up, but for GF/AI readers in Australia this website really is a goldmine. There isn’t much else out there like it.

    [Reply]

  • http://theorganicbeautyshop.com.au Stefanie

    Hi Sarah,
    I just wanted to point you in the direction of a new food doco that you may want to check out if you aren’t aware of it already.
    http://www.perfecthumandiet.com/blogs/news

    I’m quite excited, I might just try and order a copy myself. I saw it discussed on PaleoHacks today.

    Best wishes. oh and great post of course. I did wonder if you would respond to Mia’s article. Good on you. When you explain things like this it makes so much sense.

    [Reply]

  • Rachael

    This is the most informative post I’ve seen EVER about gluten intolerance. So I thank you greatly.

    I have a son whose behaviour has been vastly improved by the absence of gluten. I suspect he may have ASD or many traits that put him almost on the spectrum. I am not willing to put him back on gluten to have him tested. We have seen the results and as a family we now eat gluten free as I feel the benefits will extend to all of us.

    Thanks again for explaining this so extensively.

    [Reply]

  • http://www.mishapsandmayhemofglutenfreelife@blogspot.com Rachel

    Thankyou for your article. As a coeliac and a coeliac blogger I was up in arms at the intended article being discussed. Anyone who has this disease certainly doesn’t choose it and they would love to have it go away. As you say we are stuck with this for life! Reactions will always happen if we eat gluten and I don’t think Australia has caught up with the rest of the world in having as much GF choices to eat and chefs knowledge about the disease.

    I am part of an Australian allergy group who discusses all allergies, we are planning on collectively putting together a piece of writing in response to mias article. It would be great if you would be interested in contributing to this.

    Anyone with any questions about the disease that aren’t answered here, follow me on twitter @MMOAGFL.

    I look forward to hearing from you

    [Reply]

    picardie.girl Reply:

    In all fairness, Mia was not having a go at people with ‘real’ allergies. I think intolerance is widely misunderstood and if you can write something that enlightens Mia and her readers without being overly critical then that will help everyone.

    [Reply]

    Deb Reply:

    I *only* have intolerances to a number of foods, including gluten and dairy, and even though my doctor says my bloodwork indicates that I can have these to my heart’s content, the bloodwork shows a specific response. It may not be an allergic response as most of us recognize one – no anaphylaxis, no hives, stuff like that – but given my Hashimoto’s it IS likely an auto-immune response – and allergies are immune responses so not really completely unrelated either.

    [Reply]

  • ali

    what does that picture mean?
    That people who eat gluten are uncontrollable gluttons who shove cake in their face?

    [Reply]

  • Katherine Boicos

    Mia Freedman’s writing is usually bland, and after the detail Sarah has put into this (and most of her articles) I hope Mia reads it and reflects upon her own lack of quality. Who is she to mock and judge just to be fashionable or ironic (and a little holier than thou). Who cares if people who aren’t even gluten intolerant want to choose gluten free options anyway, it’s their choice, and her opinion is really quite unnecessary in such matters. I mean, what does she want to do, stand over diner’s shoulders and shout “j’accuse” if they dare express a gluten free choice.

    Sorry for the tone, but this has triggered something, Mia Freedman ‘s opinions are usually SOOOOO boring! And rather unitelligently mainstream. Cliched women’s business (usually with a gossipy tone) is her bread and butter.

    Sarah keep up the great work, even if some of us dont agree with your pronouncements, at least they are delivered with a fair degree of research, detail and information. Clever chick.

    [Reply]

    picardie.girl Reply:

    This is rude. Mia would never allow a commenter on her own site to say such nasty things about someone (particularly a former colleague). Sarah comes across as holier-than-thou to many people too, but most of us like to be constructive in our comments rather than tear people down.

    [Reply]

    Erin Reply:

    Are u serious? Yes she would! And does! Have you seen the stuff people are saying about Sarah on the column.

    Fact check before you post!

    [Reply]

    Katherine Boicos Reply:

    Reading a few comments in Mia’s page, she is fairly defensive in attempting to justify the obvious errors in her reasoning and to quote Freedman directly (including her spelling errors) :

    “I’m so sorry that I’ve embarassed you with my level of knowledge. Isn’t it lucky then that I am not – in my unqualified state – imparting nutritional or dietary advice?
    I’m just writing an opinion column.”

    But if her opinions are half-baked and generally erroneous, are they opinions that really need to be flouted? She’s scraping the bottom of the barrel. Maybe she should stick to celebrity gossip, she seems to have that covered basically well.

    And her expert reference is a cereal representative, what a joke!

    picardie.girl Reply:

    I would have expected better from the supposedly ‘enlightened’ folk at Sarah’s site.

    Mia and her site moderators are vigilant in defending the ‘dinner party’ rules of her site. They are constantly reminding commenters to ‘play the point, not the person’ and deleting nasty comments. Any nasty, non-constructive comments about the author, or any person referred to in the post are removed.

    I can’t believe Sarah would allow such pointless meanness on her site. Shame on you all for being so nasty.

    Do you think you are going to enlighten or inform by saying such things?

    Erin Reply:

    I don’t really think people are being nasty. Someone finds her boring. Big deal. Jut am opinion!

    Anon Reply:

    With all due respect Picardie girl, I have been the victim of pointless meanness on Sarah’s site (not from Sarah of course), and there was absolutely no intervention from anyone!

    Mia has an ‘Alert Moderator’ link which is quite clever, but you have to remember anyone who runs a blog unfortunately opens themselves to any person who want to contribute.

    To console myself I had to come to the conclusion that blogs contain 90% contributions from people who are polite and genuine, and the other 10% is contributors who feel entitled to be rude to and belittle people that they don’t know and have never met. The haters!

    I now try to ensure that I am part of the 90% and watch the other 10% with (albeit slightly gobsmacked) objectivity. :-)

    [Reply]

    Mel Reply:

    Katherine, Mia never defended her reasoning. Don’t you know sarcasm when you see it?!

    [Reply]

  • Lisa

    So if you eat gluten free do you indulge in the gluten free alternatives that have tons of carbs in them? The spiking of your blood sugar levels from the foods with high levels of carbs is not good for you either. Just wondering?

    I have been doing a lot of reading and I too have gone gluten-free by choice. My heart goes out to the ones who don’t have a choice. I already have thyroid disease. I just hope that this will stabilize my test results and lower my thyroid medicine prescription.
    I avoid all gluten free products and stick to meat, veggies, dairy, and fruits. I have lost six lbs. in 30 days and 10 inches! And I have only started!

    Oh…and skip the cake. You don’t need it!

    Lisa

    [Reply]

    GiGi Reply:

    This is a bit off the point, but – in agreement with Lisa, I think – I’m over everything gluten-free – or at least the image that seems to be out there – being a replacement for unhealthy food. I’m not looking for gluten-free cake, gluten-free chips, gluten-free junk. I think most people who go gluten-free; perhaps more those who do it by choice and aren’t ‘forced’ to because they have Coeliac (but I’m happy to be corrected) – are embracing a healthier way to eat overall so that they will feel better. I don’t think replacing a gluten-FILLED cake with a gluten-FREE cake makes that cake any healthier.
    I’ve found a good, lowish-carb, sugar-free, healthy-ish, gluten-free bread. That’s about all I need. I’m lactose intolerant, but can tolerate a bit of butter; and a piece of GF toast with butter for afternoon tea is now as good as any piece of cake (in fact, even the thought of cake makes me feel bloated). Banana and a dessertspoon of whipped cream – yummy! The better my diet gets, the more I find good food becomes the treat.

    [Reply]

    Joey Thomas Reply:

    What bread do you buy out of interest?

    [Reply]

    Elenor Reply:

    Lisa, please make sure to go check out the website “Stop the Thyroid Madness.” If you’re just doing what your doctor suggests — and/she is like 80-90% of “mainstream” docs, you’re NOT being treated (/adequately)! If s/he puts you on “Synthcrap” (or, as they call it, Synthroid) — you may not be treated at all! Synthcrap is T4 only. T4 is the ‘storage’ form of thyroid hormone. *IF* your body correctly and adequately converts T4 into T3 — the active form — you may be doing okay on Synthcrap. If not? You’re not treating hypothyroid at all!

    I’m not associated with STTM — except that learning all that stuff returned my life to worth living!! Instead if waking up exhausted (thyroid) and feeling like a guy took a bat to my kidneys (adrenals), with stiff neck, sore feet (some plantar faciitis turns out to be an adrenal/thyroid problem!), aches and pain, super-sensitivity to bright light and loud noises, and no energy (and I was actually NOT horribly debilitated by thyroid/adrenal problems!), now, having treated my adrenals, and still treating my thyroid — I have energy, I *feel* good, I can go out without super dark sunglasses and and and… (It’s astonishing: what I always attributed to being old (then 52, now 56), fat, and sedentary — ALL went away with adequate treatment!! I’m still old(er) {sigh}, still fat {double sigh}, still mostly sedentary — but I FEEL good!)

    Your doc WILL NOT know. S/he will just test the TSH (which is a pituitary hormone, not even a thyroid hormone!) and say “you’re fine” — even if your every symptom is screaming thyroid and/or adrenal problems! Just like with coeliac — you HAVE to become educated yourself! (I did NOT find a doctor who knew this stuff in any detail; I DID find a doctor who was willing to “play along” with what I wanted. I came in with: “I want this prescription in this amount and I want to use this increasing dosing schedule (from STTM). Do you have any objections to this dosing?” He was bemused, but willing to let me try what I wanted.

    Alas, as with so many ‘medical’ things, you can’t rely on someone else.

    [Reply]

  • Amy S

    Fantastic post, thanks so much for helping get this information out there! I had a colonoscopy result “indicative of coeliac disease, inconclusive” after 1 year gluten-free. I refused to eat a high amount of gluten and hurt myself just for a test. I also tested positive for the blood test – but is the blood test actually for wheat intolerance, not Coeliac disease? If so, why are doctors using this as a diagnostic tool?
    For future reference, it’s “Coeliac disease” not “Coeliac’s disease”.

    [Reply]

  • Grace

    Nicely done, Sarah. Ka-pow! Take that, Mia.

    [Reply]

  • Amy S

    Has Mia Freedman’s post been removed? I haven’t read it and I can’t find it.

    [Reply]

  • Amy S

    I found it. Duh.

    [Reply]

  • Amanda
  • Claire

    I have a question regarding the results from the study. It says above:
    “there’s no ‘leaky gut’ in gluten intolerant patients. This is specifically related to celiac disease.”
    I have tested positive for leaky gut syndrome (the mannitol/lactulose intestinal permeability test) – does this mean that I most likely have coeliac disease? I was under the impression that a range of things could cause leaky gut (and also that I did not have coeliac disease), but perhaps not.
    That’s a topic I’d be interested in one day, Sarah – healing your gut (beyond removing allergens). There’s a lot of conflicting-slash-unreliable information out there, so I’ve never quite dived in.

    [Reply]

    Joy at The Liberated Kitchen Reply:

    There is intestinal permeability which is specifically associated with celiac disease. There is at least one pretty new study that showed there are definitely people who have gluten sensitivity without the space between cells in the gut lining or the same autoimmune markers that celiac patients show. These people do not have the blunted villi, either, however, they have measurable reactions to gluten.

    There are also people who have leaky guts from other causes, such as candida overgrowth, SIBO, parasites, and more. I’m sure there is far more research that needs to be done. Our family has done the GAPS diet & protocol to help with this. It is based on the Specific Carbohydrate Diet. It takes a phased approach to introducing foods, starting with the most healing, nutrient dense foods, introducing probiotic foods, and eliminating di and polysaccharide sugars which are harder to digest. As the gut “heals and seals” more foods are introduced.

    It has made a world of difference for our celiac son and for the rest of us as well!

    [Reply]

    SusieV Reply:

    Claire – what is the test for leaky gut syndrome?

    [Reply]

    MirandaBB Reply:

    Maybe check out… http://www.healthscopepathology.com.au/html/functionalPathology/ip.shtml

    [Reply]

  • http://www.blog.chimesdesign.com Calee

    Thank you so much for posting this! I’ve gone to the GI several times in the last 8 years only to be told “you need to take a laxative” or that I’m “lactose intolerant” or “have IBS” — none of which are true (okay, so technically IBS is a catchall for things they can’t diagnose).

    This makes sense. I’ve been wondering about my thyroid for a while now and I might get it checked out. I lost the ability to lose weight — even after I quit gluten (and just to be safe, most other starchy carbs). I only eat fruits/veggies and whole foods now, and I workout a lot. But I keep gaining weight. This is a new development and kind of frightens me.

    Thanks again for posting. I’m so sick of my friends saying “well a little x isn’t going to hurt you” and then having a stomach attack a few weeks later that seems completely out of the blue.

    [Reply]

    Sarah Reply:

    Have you tried getting second and third opinions? In my experience, GI’s will only diagnose IBS and not look deeper into the problem. I went through 9 GP’s, 2 GI’s, 2 dietitians and a naturopath before I found a dietitian who diagnosed me with food intolerance (As apposed to IBS, gut bacteria, and all the other things I was told I had)

    [Reply]

    a reader Reply:

    IBS is totally a blanket diagnosis when people don’t know what’s wrong. Second and third opinions are important – from a gastroenterologist – but they may not be helpful if it is a dietary issue not related to significant pathology (ie coeliac disease).

    Gluten has nothing to do with weight loss. Coeliacs on a gluten-free diet usually gain weight. a) they no longer are experiencing malabsorption and the likes of, frankly, chronic diarrhoea and b) gluten-free foods often contain considerable fat content to make up for the lack of elasticity in GF flours which are usually dry and crumbly. Gluten isn’t a carb, or a starch. It’s a protein found in certain grains.

    As for uncontrolled weight gain – not to scare you with yet some other medical possibility – it can all get very overwhelming. But screening for PCOS is an idea. The insulin resistance test, however, which is the thing that can tell you about how your metabolism is being affected, is complex enough that I still haven’t taken it. In the meantime I got diagnosed with PCOS through developing symptoms anyway – but that was by an endocrinologist after some obvious symptoms – I’ve probably had it for ages, seen loads of GPs and I totally had problems with weight gain at a certain point. another thing is to check all medications – there can be some which you would never think or were told could be associated with weight gain, that can affect your metabolism. Finally, you could try the low GI diet. This is not a low-carb diet. It is based on the idea of blood sugars and how that relates to metabolism. Was developed by CSIRO in Australia. Please note, you CAN gain weight on lots of fruit and vegies. That’s when I gained most weight funnily enough! They can have a lot of sugars in them, depending, fruit obviously in particular. Whole foods are not necessarily low GI. Food for thought. Also all these foods could make you very gassy, particularly in combination with exercise depending on what kind of intervals you were having etc. I hope that the weight thing improves – I’ve been there, I know it’s freaky. Mine did – I rapidly dropped 20kg when I came off a medication I’d been on for years which I’d been told had nothing to do with it.. until afterwards it was acknowledged, ok, yeah, it technically could. Before that, healthiest diet in the world, trying to exercise loads. After, I could eat lots of crap and not exercise at all and kept losing weight.

    [Reply]

  • http://Www.kumquatblog.com Gretchen

    Fantastic post with a great compilation of information. Thank you for sharing… I plan to forward it on.

    [Reply]

  • Suellen

    Thanks Sarah. Thoughtful and thorough as always.

    [Reply]

  • Claire

    Thank you Sarah! I loved this post. After spending the last year searching the web for information on gluten – I found this post to be the most helpful. You have a great gift, keep on sharing.

    [Reply]

  • Elle G

    Thanks for the post Sarah. As someone who has been gluten free for 15 years due to gluten sensitivity not coeliac, your post made interesting reading. Nearly every Dr I have seen since then has questioned why I choose gf.
    I no longer have Severe IBS, arthralgia, constant nausea, bloating or fuzzy head.
    that is the reason!

    [Reply]

  • Janine

    Thanks for a wonderfully written, concise and informative post!

    I no longer tolerate Gluten and for the most part stay off it completely. Now and then I can tolerate a little treat with no symptoms BUT who knew that just a crumb could trigger a response lasting 6 months! I will be a whole lot more careful from now on.

    I guess that it’s true that by the time you actually feel a response to eating the ‘wrong’ thing your body is in crisis, not just feeling a little bit bad….

    [Reply]

  • Mel

    HAHAH…just saw Sarah’s latest twitter photo. Carbs & bacon on the same plate – very funny!

    And someone please correct me if I’m wrong, but did cavemen eat such lavish omlettes???

    [Reply]

  • Sue

    “And someone please correct me if I’m wrong, but did cavemen eat such lavish omlettes???”

    They would if it was available – they ate what they had.

    Sarah, re you post – sometimes you use the word intolerant then sometimes sensitive – you should just pick one i think.
    “Gluten sensitivity is an autoimmune disease” – I don’t know if its quite correct to put it that way. If gluten sensitive and have damaged gut lining, may lead to autoimmune antibodies.

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  • Heather

    Thanks for this post. I am a diagnosed celiac and my daughter at 4 years of age had all the symptoms, positive bloods and negative biopsy. I have a very supportive GP and specialist for her who support that we have made the choice to remove gluten from her diet. Our specialist has said that the way that celiacs is going to be tested in the near future is changing and we will no longer have to do the very invasive biopsy. When that day comes we will have our daughter tested again. I come across many people who are put out by my restricted diet – including family. I do find it embarressing at times that I have to be so particular however when it comes down to it, I have a disease and just because no-one can see it, doesn’t mean that it is not real. I have had many people say that a little bit will not hurt. Well yes it will. I think it is really important that people like yourself Sarah, continue to share the facts on gluten intolerance. Not everyone will listen but some will and this might help make the road a little bit easier for us.

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    Vicki Reply:

    Ahhhh Heather, it does my heart good to hear common sense, and that you have a GP and a specialist saying that going gluten free without diagnosis is a good idea. Hopefully we are reaching the tipping point.

    It’s not hard to understand that if something makes you sick, you shouldn’t eat it or feed it to your children.

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  • Jennifer

    Well, I am glad you are talking about gluten free and sugar free and Hashimotos because that’s me as well! And it really frustrating for me to have friends treat me like I have an eating disorder because I don’t eat sugar any more. This is one the most comprehensive pieces on the topic of celiac and gluten intolerance. I am blown away by the extent of your knowledge! Thank you for doing the research for lazykins like me! XOXO

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  • Alexandra

    I agree with Mia that food evangelists are extremely tiresome – I’m a Christian but I would never proselytise to my friends about my faith the way some of them do about their new lifestyle changes because I recognise how irritating/boring it can be! Not everyone does or even can have health as their first priority so check yo privilege before assuming they do. Much better to make the changes yourself and if friends ask why you look/feel so great then by all means tell them.

    I do appreciate articles like Sarah’s though because I have reduced my sugar intake so much, increased my fat intake, come across some really interesting ideas so I’m glad she writes about them. I there’s a difference between Sarah writing about food topics on her blog and her (or anyone) earbashing you for ordering skim milk in your coffee when you catch up.

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  • http://paulines.mysisel.com Pauline Santillo

    I developed a rash on my right shin July 2011. Naturopath’s and medical practicitioners couldn’t tell me what was wrong and why this rash, which spread to 80%/90% of the front of my body. In November I had a session on a bio meridian machine, where I learnt I had many intolerances – mould, candida, fungus, open fire smoke, citrus, peppermint, chocolate, dairy, wheat, grasses, feta, cottage cheese, dog and cat fur, horse hair, hairspray, sulphur dioxide, broccoli, petrol, diesel is not a problem, the list continues. When I eat something I know I shouldn’t my leg’s tighten and I develop a rash on my leg’s and corner of my mouth. Why? From what I read it’s my digestive system which is not healthy, therefore my immune system does not function at its best. We must understand why we need to eat much more fresh food, particularly vegetables, and remove from our diet as best we can, all processed foods. Children eating those dead foods in plastic are tomorrow’s health issue.

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  • http://theliberatedkitchenpdx.com/ Joy at The Liberated Kitchen

    Thanks for this. I think it’s also worth noting that so what if it’s “just” a food preference. I did a gluten challenge after a year of being gluten-free and on the GAPS diet and discovered that gluten really, truly is terrible for my body and mind. However, I have no diagnosable autoimmune disease. So while it’s “just a choice,” it’s my choice to make, and it has dramatically improved my health in a variety of measurable ways!

    I tried to post the following on the other article, but it seems they censor pretty heavily so who know:

    Yeah, fads are annoying for sure, as are evangelists. After my family changed our diet, I admit, it was hard not to spread the word. My dad is a preacher so I guess you could say I’ve got evangelism in my blood. In my attempt not to annoy all my friends to death, I started my very own blog so they could take it or leave it.

    Imagine this scenario: Your kid is hospitalized and has emergency surgery. He’s had problems all his life, that no doctor could fix… skin problems, asthma, ADHD, extreme dyslexia (can’t read at age 10), sensory integration, joint pain, bone pain, stomach aches, the list goes on. Now the doctors have him drugged up constantly but nothing is working.

    You jump on the fad and change the family’s diet – first cutting out gluten, then going one better (we switched to the GAPS diet)… and EVERY SINGLE PROBLEM HE HAS GOES AWAY! In just a few months, you have a completely different, healthier, happier child, no drugs, no hospital. Bonus to that – the whole family gets healthier, ditching problems they’ve had all along.

    But eat some gluten – it all comes back.

    Then a terrible thing happens. You start to see people with the same issues all around you. They’re struggling, hurting, complaining of the same things YOU’VE BEEN CURED OF. The polite thing to do is to say nothing.

    I *try* not to beat a dead horse. But I’ve just got to put it out there. If people hadn’t put it out there to us, we’d still be sick. I’m grateful to the people who badgered our family to change our diet! They saved our lives, as far as I’m concerned. It’s no fun for me to be the Crazy Diet Person when I just want to enjoy something a friend has to offer.

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    Elenor Reply:

    Wisdom!

    I’m a nutrition-geek — I love and read this stuff all the time. I described to a friend that it’s like I’m sitting on a MOUNTAIN of gemstones!! I’ve got baskets and baskets of this wealth and health and wisdom, and I CARE about these folks, and I’m trying SO hard to hand them jewels and gems and wealth! (My cul-de-sac neighbors have started call me “Dr. E” — but at least so far they say it with love. {wink}) So, now I try to just seed the field: “This has worked for me. This has helped.” and let it grow or not grow as the person chooses.

    (But yes, I DO carry around business cards I printed up with a list (both sides {wince}) of important URLs I hope folks will go check out… I got tired of trying to write them down when I did find someone interested and wanting to know more. Now, I just give them the card, maybe point to the one or two specific to THEIR complaints…. Can’t help it — it’s GEMS!)

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  • Sue

    Sarah, there was a paragraph where celiacs, intolerant and sensitive was used and it was kind of confusing which group was being talked about. Anyway, ignore my above comment as I read further it was clearer. Intolerant is celiacs and sensitive is for the others that don’t have positive results on celiac test. They definitely do need better testing.

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  • james m

    http://tiny.cc/nsl45
    ‘Three hidden ways wheat makes you fat’. Dr. Mark Hyman is another great resource on this (and sugar addiction as well). Highly recommended! oh, and with references… ;-)

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  • Red

    Im not looking at the other posts but this is your best post ever. I am blown away by your writing and research on this topic. This is what doctors should be handing out to any sufferers or friends and family who try to cope with gluten sensitivity or disease. Much love :)

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  • Red

    Ok just read some of these comments and it makes me angry. Sarah is posting this because this is a condition that needs to be taken seriously as a sufferer of both thyroid and gluten i am well aware that this is not about faddism. Id advise anyone with auto immune to avoid gluten seriously i can function normally without it and with it i cannot. Enough said.

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  • pip

    I’m so glad you posted this blog Sarah. It’s a great response to anyone who thinks we’re choosy in our consumption because of ‘fussiness’ or perhaps arrogance? I would love nothing more than to be able to go back to eating blindly whatever I fancied – even in moderation! Alas i have to think hard about every morsel that passes my lips and it’s really depressing having to explain constantly why I eat the way I do (as if i’m doing it for fun). As I’m not officially coeliac, it makes for a very long-winded, painful explanation! Over it. I might just tattoo your blog to my forehead to avoid all future conversations of this kind. Thanks again. xx

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  • http://angieathome.blogspot.com/ Angela

    Thanks again Sarah, for making so much sense.

    I’m one of those annoying people who, without an official diagnosis, is now gluten, and pretty well, grain-free.

    I suffered from “IBS” for close to 20 years, and no doctor could help me. I had a blood test to see if I had coeliac disease, but it wasn’t positive. My doctor sent me to a specialist who told me to get some healthy bacteria by taking acidopolis. It didn’t fix the problem. I learnt to live with it. Then I saw a naturopath who suggested I give up Gluten.

    I felt so much better.

    After a recent diagnosis for the early stages of an autoimmune disease (Don’t know which one, but one is waiting in the wings…) I also gave up sugar and grains. I no longer suffer from daily bloating, which by the end of the day had me unbottoning my trousers. Nor do I have to battle with the sudden toilet visits, which aren’t always at a convenient time. Nor the joint pain.

    So I’m not “allergic”, but it really makes me sick.

    I do think that western society generally eats far too much grain, and it is making many, many people sick.

    I wish doctors would suggest trialing gluten free diet to more patients, I bet it would help many others suffering from niggling symptoms.

    Nutrition is so important. I never get tired of your food posts, Sarah.

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    a reader Reply:

    Again, a blood test alone doesn’t rule out coeliac disease. There can be false negatives. You could be coeliac.

    However, it is probably difficult for those who don’t have classic symptoms or a diagnosed family history to get taken seriously by their doctor after clear bloods – I’m supposing people probably get blown off – even myself, it took ages to finally get a diagnosis. I would encourage people who really think they cannot eat gluten to confirm with a biopsy.

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  • http://www.mishapsandmayhemofaglutenfreelife@blogspot.com Rachel

    Hi Angela and any other coeliacs or gluten intolerant people. I’m a coeliac and the author of a blog to help people http://www.mishapsandmayhemofaglutenfreelife@blogspot.com I write about my stories before and after diagnosis, I share recipes, restaurant reviews and look into the link between the GF and caesin free diet and improvements to autism. Please feel free to come to my site or chat to me on twitter @MMOAGFL. it’s nice to have somewhere to go for support or just a safe recipe! Hope to talk to you soon. Once again Sarah thanks for writing this article!

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  • F.A.B

    Thanks so much Sarah – I’ve been reading your blog for a while (and never commented before) but this article summed up a lot of things for me.
    I spent about 2 years with various strange illnesses including gut issues, inflammation, bone pain, tingling, rashes etc and my GP tested me for many things including celiac disease. In the end, as the tests only showed up I was Vitamin D deficient, he thought it was all in my head and recommended anti-depressants….so I went and got a second opinion and in the mean-time saw an article on your blog about removing gluten from your diet. The second opinion advised me that I had a positive blood test for celiac however negative for the biopsy….but by that stage I felt like a new woman for cutting out gluten (oh and I decided at the time to give up dairy, alcohol and caffeine to clean up my system). I have been gluten free for over a year, feel great and amazingly, reversed my fertility issues and now have a beautful baby :)
    So thankyou for this great info and thankyou also for steering me in the right direction to good health! You are a legend.

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    Barb Reply:

    What a great story! Thanks for sharing! So glad you got the 2nd opinion. I am curious, was the 2nd opinion from another GP or a natural health therapist?

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    F.A.B Reply:

    No worries :) I went to see another GP for a medical diagnosis but I did see a naturopath around the same time to get some advice on the nutrient deficiencies.

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    Alexandra Reply:

    Aw congratulations, that’s such great news!

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    Elenor Reply:

    “The second opinion advised me that I had a positive blood test for celiac however negative for the biopsy…”

    I don’t remember where I saw it (or if I heard it in a podcast) but a doc points out that a “diagnosis” of coeliac is only granted after ‘you’ have completely destroyed your intestinal villi. If you’re “only” 50% destroyed, they (often) do NOT diagnose coeliac — they wait till you come back with your gut completely destroyed and THEN they diagnose you. That’s *standard medical practice*. (I don’t entirely blame docs — if they keep “stepping off the reservation” by testing or diagnosing stuff the local medical board (made up of OTHER docs) don’t like or won’t support…. then the DOC gets in trouble.

    Dr. Mike Eades has a superb metaphor for why you need to manage your own health care: when he was learning to fly, he was once sitting waiting to cross a runway to reach the one he was to take off from. The AT Controller radioed him that ‘he was all-clear and could go ahead and cross the runway,’ so he released the brakes and began to roll forward. The instructor, sitting next to him, slammed on the brakes and asked ‘whatinthehell he thought he was doing?!’ Dr. Mike said: “the ATC said I could go.”

    His instructor said: “If the pilot makes a mistake the pilot dies. If the ATC makes a mistake: THE PILOT DIES! Always always always check for yourself!”

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  • Barb

    This post was a wonderful eye opener for me. I have been gluten, dairy and sugar free now for 6 months. Gluten free just because I believe that it causes so many problems to which you have just compounded in me. I did a quick google for Hashimoto’s and found an article from the “better health channel”. Well, typically, in mainstream health, the causes are “unknown” but possibly genetic or caused by bacteria or virus. No cure but – wait for it – medication for LIFE!! Ha! Going gluten free is not good for the ecomomy you know or BIG PHARMA’s pockets. They will tell you that most diseases are caused by genetics or unknown factors and will never consider that most diseases are caused by diet. Good luck Sarah, in managing your health. I have never felt better after changing my diet and I am now studying nutrition as a result.

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  • meredith

    i’m just trying to get my head around being finallllllly diagnosed with hashimotos, (day 12 or so on thryroxine). relief was great in that it explained years of a consistently gradual decline in health. i then visited as many websites as possible, including youtube and found a few informative ones by Dr David Clarke, which i think is worth looking at. yes, he goes on about gluten and dairy, see clip for details, and confirms what sarah is saying. it seems diet is the key to balancing auto immune diseases. as for sugar: went off it for a year, after a few drinks ate a chocolate florentine and didnt stop eating sugar laden products until put on 22 kgs. i believe i have a slightly addictive system, shall we say, as well as at the time undiagnosed hashimotos, but i do think it is every bit as bad as suggested. so my thinking is we should be supporting the understanding of how to get our heads around such dietary requirements, cos it’s hard out there when most foods have them. it means not thinking self-deprivation, rather caring for ourselves, good products, etc and that’s a lot of thinking and work! thanks for your website, sarah.

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    Svasti Reply:

    Best wishes Meredith with Hashimoto’s. Being newly diagnosed is a challenging time. That was me around April of last year and I know how mind-blowing it can feel. You’ll start feeling better in 2-4 months. Keep up all the good work!

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  • http://www.allthngsheartandhome.com Robin

    Best answer I’ve ever heard to that question, which from my experience is sometimes very snarky…
    I’m going to share this on FB and twitter…thank you Sarah, I was diagnosed with Celiac 9 months ago and Sjorgen’s 3 months ago…just started your book and your quit sugar plan.
    Keep encouraging those of us who need it!
    xo

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  • Han

    To be honest I think everyone missed the point of Mia’s article. When waitressing I came across a lot of people who will lecture you on their gluten free/sugar free/enjoyment free food choices (which we try our best to accommodate), and then order chocolate mud cake for dessert. I think these are the people Mia is refering to. Those who with no research or diagnosis have declared themselves “allergic/intolerant/sensitive” etc, with no scientific or medical backing, talk themselves silly about it, and then of course, blatantly contradict themselves.
    I truely don’t feel Mia’s article intended as an attack anyone, especially not those with serious health issues. I feel her objective was to poke gentle fun at the latest twist in fad dieting. In a way the response to her article has proven her point.

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    eve Reply:

    The problem with Mia’s article is that she confused several issues into one. It was badly written, unresearched and contained inaccuracies. I reckon she spent all of 10 minutes writing that one. The pity is that she has a big following who tend to lap up every sentiment.

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    Mia Bluegirl Reply:

    Hi Han. That would have been awfully frustrating for you, dealing with those uneducated people! I worked in customer service myself and I get that some people hold true ignorance as a virtue and can be unendingly frustrating.

    Unfortunately this is what comes back to haunt those of us with true allergies. Good on you for doing your best to accommodate allergies as this is quite rare!! If you admit you are celiac a lot of restaurants will simply claim there is gluten in everything and tell you to eat somewhere else. Which isn’t even true but I understand their fear of being sued! This has happened to me multiple times, and happened yesterday.

    Please do not assume that all those who claim allergies are ungenuine based on a few bad experiences with a few stupid people.

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    Han Reply:

    Hi Mia
    I completely get what your saying, I feel as though I’m trying to make the same point in reverse:) Just as I am not going to let a few annoying customers taint my veiw of true allergy suffers. I think those who suffer from allergies should not let those few people who are rude or uncomfortable about their diet choices taint their view of how society see’s their condition.
    I feel the intense reaction to what I perceived as a light hearted, opinion article has only further proved the articles point. Perhaps a little more love and humour on either side of this debate is needed.

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    Mia Bluegirl Reply:

    Let’s have more love and humor everywhere! From everyone! About everything. Great idea!! :)

    I shall do my best. It’s hard to be light hearted when you are talking about sickness. And being kicked out of restaurants which cook food you happily can eat, just because the staff are uninformed. Then again… I guess that’s when you need the love and humor the most, right?

    On a completely unrelated note, we should make a video called Shit Customers Say, on the weirdest and craziest things consumers have said. It would be hilarious.

    Joy at The Liberated Kitchen Reply:

    I’m really serious about the food issues, but agree that we can’t be all serious all the time. That’s why my partner and I started Real Food Ryan Gosling and Gluten Free Ryan Gosling. Poking fun at ourselves is fun! Email me if you have ideas to add to them :)

  • http://livingsimplysothatothersmaysimplylive.blogspot.com/ Tina Marie

    Have you taken a look at the website http://www.glutenfreesociety.org/ ? It goes into great detail about a number of diseases that are linked to gluten sensitivity. Someone asked if there is a test to find out for sure if you are gluten intolerant or have celiac and there is a test available on this website. You can check gluten intolerance through a genetic test. It is way more accurate than the tests at the doc’s. We (the family and I)have been gluten free for three years now. We actually avoid all grains as recommended on the SCD diet and the diet recommended on the above mentioned website. We also love to eat paleo. It is quite a change, but the health benefits are worth the extra work in preparing and planning foods.

    I hate how people think that gluten free is a fad diet or some kind of kick. Most doctor’s have no clue how to handle gluten intolerance and are really misinformed. My baby almost died because of gluten intolerance. I was on a traditional gluten free diet and ate grains like corn and rice. But these grains cause my exclusively bf baby to get really sick. He weighed 9lbs 13oz at birth and lost weight really quickly. His lowest recorded weight was 8lbs 6oz. Everyone blamed my breastmilk and my supply. I had to supplement and take domperidone to increase my supply. Both of these have high doses of corn derivitives in them. Needless to say, my baby got really sick. He threw up every meal. It wasn’t until a friend told me about the above mentioned website and eliminated all grains from my diet that he began to thrive. He has never had a grain since. He is a healthy two year old. My oldest son’s food battles stopped suddenly and I began to actually lose weight without effort. I wish some people would just believe me when I tell them that we are actually healthier without gluten. One crumb of wheat makes everyone in this house so sick.

    My kids get harassed from time to time. They think mommy is mean by not letting them eat a cookie or piece of cake that has been offered to them. They laugh it off and tell them not to worry and that they get plenty of treats. They tell the nice little old ladies that mom is a good cook and that cake isn’t really all that good for you anyway. Smartie pants!

    Good luck and keep getting the word out. Evangelizing isn’t our thing either, but if people ask or harass we inform people to the best of our ability.

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    Laylach Reply:

    Hi Tina

    Sorry to hear what a battle your poor baby (and you) had. Do you have any advice on helping your kids stay grain free? My son is extremely gluten intolerant and reacts to most grains in some way (and dairy). However, he has just started high school and is getting teased re his lunch and feels deprived when other kids eat sandwiches, biscuits etc even though he understand the health issues for him. I used to be able to control his diet but he is becoming a teenager and pushing boundaries, having sleepovers at friends etc and i know is eating grains all over the place when I am not there to supervise so that he “fits in” Your kids sound very balanced and comfortable with their diet!

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    Joy at The Liberated Kitchen Reply:

    Hi Tina,
    I have two kids (11 and nearly 13) who have had to adjust not only to being gluten-free, but also to the GAPS diet. In our diet, all the foods are carefully sourced, we are free of ALL grains and psuedograins, all starchy vegetables, all refined sugar, & most legumes. My son is also extremely sensitive to cross-contamination and allergic to corn, so eating in restaurants or eating foods that have the right ingredients but were prepared in a contaminated kitchen is totally out for him.

    All people with special diets go through the stages of grief, I think. Our son especially has gone through a lot of emotions about it, and does cycle back to feeling very upset and frustrated about not being able to just be normal. I know that especially in the teen years those feelings can be magnified.

    I am currently writing a series on how to empower kids on special diets. Part 1 is about the reasons kids should be on special diets, Part 2 is about how to have a transformative conversation with your kid, and I just posted Part 3 yesterday, about making it easy.

    Part 4 which is not up yet is going to focus on handling the specific kinds of situations that come up. If you have specific situations you’d like me to address let me know and I’ll try and include them.

    The key points flowing through the series are that to feel empowered about a diet, kids (actually anyone) need:
    - To believe their diet will keep them healthy or has the potential to make them feel better
    - To know what they need to do to stay safe and stick to the diet
    - To be given control over what, when, and how they eat
    - Bonus: It also helps if they like the food!

    -Joy

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  • http://www.fruitsaladmixedveg.blogspot.com Miss Kimbers @ Fruit Salad and Mixed Veg

    Ah, yes. I read this article in the paper last week.
    I am not gluten intollerant or anything, as diagnosed by the doctors. However, haven given up grains (ok, yes I still make cakes because that is my hobby and I have one slice and then give the rest away to people) I have no more issues – I can WALK now, I am not in pain, I do not feel sluggish, I do not want to be sick all the time etc. It’s fantastic!:)

    “it’s bloody boring when they bang on about it.”
    I wouldn’t ‘bang on’ about my hatred for grains if people did not constantly say things such as ‘why aren’t you eating pizza, are you anorexic, why don’t you eat this, you’ll DIE if you don’t have wheat!’ blah blah.

    A very informative article:) Thank you for sharing:)

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    jan Reply:

    Miss Kimbers
    I have to chuckle at your last paragraph. When I joined Weight Watchers and stopped eating sugar, I lost the desire to eat sweet things as well and never really ate store bought stuff because of the amount of artificial ingredients and additives in it. We always had cake at our weekly work meetings and people thought that I was so “good” not eating cake at 9.30 in the morning, when really I had no desire for it.

    One morning we had a meeting in the cafe and somebody had brought these French patisseries as it was somebody’s last day. When I said I didn’t want one, the boss exploded and yelled can’t you just break the rules for one day? I replied that they had told me about people like him at Weight Watchers and he shut up!

    The point is that people feel very uncomfortable if you are not eating the cake, pizza or whatever. They think that you are being “difficult” when really, why should you eat stuff that you really don’t want to? That’s why I thought the section in Sarah’s ebook on what to say to people who question you was a stroke of genius! Can also be used for people on a weight loss diet as well.

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    Mia Bluegirl Reply:

    Agree – that last paragraph is gold. So true!!

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    pam Reply:

    miss kimbers, i’d advise actually going to a doctor and getting them to sort out what it is that causes your sickness, then you can make a properly informed decision on what you should and shouldn’t eat. it’s all well and good to experiment, but it’s better to get a real diagnosis.

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    Karen J Reply:

    If Miss Kimbers (or anyone else here) doesn’t feel that ‘outside validation by authority figures’ (i.e. a “real” diagnosis) would be more helpful or important to her than what she’s already learning on her own, about her own body, that’s really okay.
    The medical model of illness isn’t designed to help us live healthier, happier lives. It’s devolved (particularly here in the US) into a system of Labels and Boxes and “What’s Wrong With You?” guilt trips, to be quelled (but never healed) with gross generalizations, broad-brush rules and pharmaceutical drugs. And lots of money, passing from us to the doctor-corporations.

    (ooh! Reading this after I wrote it, I have to hope I don’t sound too ‘ranty’ – it’s hard to tell from behind my own issues. Apologies, if needed!)

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    Karen J Reply:

    Personal experience (one’s own and others’), and the incredible support that’s shared here and on similar sites, for many issues, can be of incredible value, whether or not one *also* consults with “licensed professionals”.

    Thank you for providing this forum, Sarah! And for contributing, All!
    Karen

  • GiGi

    The proof is in the pudding!

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  • http://happymommy1.blogspot.com/ melissa

    Thanks for the post. We have been on a 20 month journey with my son as he has been diagnosed with allergies and has either a gluten allergy/intolerance or celiac’s. Since we know gluten = angry or ill baby with blood in the stool we just avoid gluten BUT one day would love to find out which he has so he can hopefully have a better quality of life and answers to the questions he will ask once he is old enough. With a family history of autoimmune diseases AND allergies it is anyone’s guess unless we allow an onslaught of gluten for 6-8 wks and a biopsy and relaly w ho would do that to a baby who thrives when off gluten and does not have to eat it daily? Not me thanks.

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    a reader Reply:

    Muh, I think what might confuse people is the “i don’t eat it but sure, I’ll have a slice” part. There’s an inconsistency and a willed logic to all of this that doesn’t wash with other people. I have gone on many diets to cut out potential sources of GI upset and I guess teh thing is – probably I try not to mention it to people but when I do, I guess I feel like, well, if I don’t explain, sure, they are not going to understand. If I don’t really have an explanation, well. I guess what people have difficulty understanding is how someone without a serious allergy would have difficulty walking etc after consuming gluten. It can be very difficult to obtain accurate diagnoses for gut symptoms

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  • wanda

    thank you, thank you, thank you, I posted this to my facebook page (both one i use for friends and family and one i use for just for games) i posted it to twitter and I sent it by email!! i then saw it was past on by a few people from there.

    i got so mad at the today show for giving bad advice i went to facebook liked them so i could leave my rant then unliked them. oh how i wish america would wake up.

    why is is so hard to believe that it is that deadly. nobody would dare think about it if i went in and said i can not have a peanut.

    i have 8 of the just the things you have listed and 2 autoimmune diseases (Wegeners Granulomatosis and Hashimotos) I have almost died twice and I am now “disabled” have permant nerve damage and have a hard time walking and standing

    Now if we can get food network to have a show for us GFers

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    Karen J Reply:

    “Now if we can get food network to have a show for us GFers”
    ~ What a grand idea! Have you written to them (or the Cooking Channel) with this suggestion/request?

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  • http://www.3746.daisybluenaturals.com Kathie

    13 years ago I started with Hashimoto’s then progressed to 3 more autoimmune diseases. 9 years later I was tested and of course, I had one Celiac gene and one gluten intollerant gene. I continue to suffer with all my auto immune diseases even being GF for 4 years. What I need is information on how to heal the damage!
    Loved the article.

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  • Lolly

    Thank you. Awesome article.

    [Reply]

  • http://intolerantchef.blogspot.com InTolerant Chef

    I really enjoyed this article, thanks. I am a qualified chef who is InTolerant to both dairy and gluten. The best way to change peoples bad opinion of us ‘fussies’ is to feed them great food thats InTolerant friendly. My philosophy is to change the world, one gluten at a time!

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  • Margie

    Brilliant post. Thanks so much Sarah

    [Reply]

  • seeker

    supercharged food

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    seeker Reply:

    i love the easy tasty recipes that must be such a godsend for those with intolerances … i don’t think i have any to much of a degree but i still like to eat as tho i have – partly/kinda …. anyway … its a great recipe book!

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  • http://www.gourmetmeals.com.au/gluten/index.html Kyla Patterson

    I think our company can help those suffers. We understand the need for preparation in a totally gluten free environment. We now have 6 products which we are distributing Australia wide completely gluten free!

    Ready made meals for the gluten intolerant that always taste good!

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  • http://mummyissuespart2.blogspot.com/ Lee

    I have coeliac disease and I am so pleased you wrote this in response to Mia’s popularist piece. I feel much clearer on the issues of AI disease and sensitivity too. Thanks for your very clear explanation.

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  • Julie L.

    So am I correct in reading that “leaky gut” isn’t involved in gluten intolerance, just in Celiac?

    [Reply]

    MirandaBB Reply:

    Hi Julie – noticed no-one’s replied to your question. This is a bit of a laywoman’s summary but I have had leaky gut (think it’s mostly repaired – taken years to do) and am now wheat & dairy intolerant, plus have fructose malabsorption. ‘Leaky gut’ describes a digestive tract that’s become permeable. That is, weakened from antibiotic overuse, poor diet, exposure to environmental toxins or high levels of mental/ emotional stress, it develops microscopic holes. When that happens small molecules of digesting food slip through these ‘holes’. Your immune system recognises these molecules as invaders (ie. they’re not where they should be) and launches an attack that over time develop into intolerances. So a ‘leaky gut’ is definately connected to developing gluten and other food intolerances (dairy, corn, soy, etc). In Coeliac Disease the immune system reacts specifically to gluten that causes small bowel damage and you are genetically disposed to developing it. Coeliacs can also develop ‘leaky gut’ and food intolerances. In both situations: Coeliac Disease and food intolerances due to ‘leaky gut’ there are auto immune issues going on.

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  • Tammy

    Hi Sarah, Thanks for your informative article! Can I just confirm about the leaky gut comment. My little boy has gluten intolerance and leaky gut. I was told the leaky gut was caused by my antibiotic intake during pregnancy illness and the leaky gut has caused his intolerances. We have not tested him for celiac as I feel he is too young and I dont want to put him on gluten but we have no family history of it. Any thoughts on this?

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  • pam

    gluten isn’t a ‘poison’. please don’t peddle your utter crap nonscience as if you have any knowledge on the issue. it does a disservice to those of us who actually do have medically diagnosed coeliac disease, because the general public just see these dodgy blog posts from people who haven’t even properly read any of the studies (your comment about gluten ‘causing’ various illnesses is plain wrong – there is a lot of research being done into the links between coeliac disease, gluten insensitivity, and a range of diseases and medical problems, but it’s just that – research – and not to the point of conclusiveness with the exception of some cancers and dermatitis herpetiformia). As someone with medically diagnosed coeliac disease i am so utterly sick of ill-informed pieces like this that serve no purpose except to turn my real medical issue into a medicodietary fad.

    [Reply]

    chris Reply:

    +1

    [Reply]

  • chris

    The second line of your article states ”Gluten sensitivity is an autoimmune disease” – no, Coeliac Disease is an autoimmune disease, gluten sensitivity is not. Gluten sensitivity sufferers experience ”one or more of a variety of immunological, morphological or symptomatic manifestations that MAY also be shared by coeliac disease and irritable bowel syndrome. NEITHER anti-tissue transglutaminase antibodies nor autoimmune comorbidities are found in people who are gluten sensitive.” They are only found in those with Coeliac Disease.

    [Reply]

    chris Reply:

    And where exactly in the Lancet paper does it say ”even just a little [gluten] increases their risk of death by 600 per cent”?

    [Reply]

    chris Reply:

    In fact, The Lancet study you refer to says:

    ”Because most patients who died
    within 3 years of coeliac disease diagnosis had non-
    Hodgkin lymphoma, ulcerative jejunitis (regarded as a
    malignant disease strictly related to lymphoma)18 or other
    tumours, the recorded excess of mortality during this time
    could be due to the occurrence of malignant disease, rather
    than to coeliac disease alone. After this time, the patients
    with coeliac disease who survived showed a probability of
    death similar to that of the general Italian population.
    Although the severity of clinical presentation should
    relate to morbidity rather than to mortality of coeliac
    disease, most of the increased mortality (43 of 53 deaths)
    occurred in patients who presented with classic symptoms
    of malabsorption at diagnosis. By contrast, patients
    diagnosed with mild symptoms or by antibody screening
    did not show any relevant excess of mortality.

    ”Nielsen and colleagues did not show any
    difference in mortality risk for adult coeliac disease patients
    according to their adherance to gluten-free diet. However,
    Logan and colleagues,3 noted a non-increased mortality
    rate in adult patients who had been on a strict gluten-free
    diet since diagnosis at childhood.”

    [Reply]

    chris Reply:

    By the way, I have Coeliac Disease, confirmed by blood tests and endoscopy.

  • Sabrina

    Awesome blog topic Sarah, thank you for putting the word out there! I am highly gluten sensitive, and a gluten free lifestyle has diminished most of my health symptoms. As you say having existing auto-immune diseases (for me – Grave’s disease aka Thryoid, Raynauds Syndrome and lactose intolerance) predisposes you to other auto-immune conditions. It took nearly a year of medical investigations (with doctors pointing to ovarian cysts and the like) to determine gluten as the culprit, after changing doctors and having a gluten antibody bloodtest. Looking back (isn’t hindsight and a bit of knowledge great!), I started off with a gluten allergy – consisting of very bad eczema for c. six months, changing into excessive bloating, incredible lower intestinal and back pains, extreme fatigue, depression etc etc. I have to say the gluten free market has changed a bunch in the last three years, there are now many lovely (and tasty!) alternatives to a wheat infested diet. I used to long for certain wheaty foods of the old days, but no more! :) Healtheries gluten free baking mix, is an awesome all around flour you can use in all your baking and cooking :) And yes gluten free food is more expensive, but I’d rather pay the extra dollars and feel normal. One thing that I still find frustrating is that gluten free is described as a ‘fad’. It isn’t. You go girl!

    [Reply]

  • A real Coeliac

    “Celiac” is the American spelling. In Australia we call it “Coeliac”. Nice to see you have just paraphrased from an American publication and know little about Coeliac yourself or whether non-coealiacs should actually be avoiding gluten, which i personally believe is rubbish and you are following hype.

    [Reply]

    chris Reply:

    exactly. particularly disturbed by the reference to the Lancet paper – see my comments above.

    [Reply]

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  • http://post-zeitgeist.blogspot.com/ 6810

    Grains, like wheat, are defenseless little things – the only way they can fight back against predators is via the poisons in their husks. Ergo, gluten. Some creatures, like birds, are clearly adapted to overcome the defenses of gluten cereal grains. Most animals, including most mammals and our closest relatives the omnivorous fruit and insect-eating chimpanzees, are not adapted to grains and don’t eat them in substantial quantities.

    The question is, are humans adapted? Nope. We have the same makeup as our primitive relatives who didn’t eat grains. The only thing that’s changed is our diet. Massively so”.

    This just doesn’t make sense. Why?

    (a) Gluten is found INSIDE the wheat kernel and not in the husk. Even as an analogy this doesn’t work, since, if humans were to eat more whole grains and so increase fibre intake as a result, the total amount of gluten would be reduced as relative to the proportion of fibre (husk)/kernel (carbohydrate and gluten). We can therefore significantly reduce gluten intake by INCREASING the amount of whole grains eaten.

    (b) Animal/human comparisons, as has been shown numerous times (thalidomide, anyone) that animal responses to foods, poisons and medications can be very different to human responses. Just go feed your dog onions or your parrot parsley and see what happens.

    (c) unrelated to the above but pertaining to the article: it is highly unwise to posit a single substance, especially one with a fashionable history of blame such as gluten as the key to all ills. I would suggest that we would make more progress in human health if we were to source more food locally, better educate our children, introduce extensive, compulsory and reduced cost nutrition programs into primary and secondary schools (with opt out for over sixteens, post compulsory education students), place a stronger emphasis on food culture and ettiquette vs food and fuel and convenience as well as strongly encourage hand made food (including those with a variety of naturally occurring microorganisms such as various lacto-pickles).

    The current method of cherry picking research and sensationalist reporting in the media has only related in greater confusion as we lose touch with the basics in the face of an abundance of manufactured foodstuffs.

    Gluten intolerances are no doubt real, but as with most “conditions” of this sort a holistic approach tends to yield better results than simple avoidance and shouting matches.

    [Reply]

    a reader Reply:

    Great – thank you for a reasoned response.

    [Reply]

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  • Jessica

    Just found this after a friend posted it on Fb. :-)

    A question for you – my oldest daughter was dx’d with Type 1 Diabetes at 7, Hashimoto’s at 10 or 11. I had her tested for Celiac, actually before the Hashi’s dx. It was negative, her intestine was pink and perfectly healthy. How does that work? I thought for sure she’d end up positive.

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  • http://www.RecycledGrace.etsy.com Grace

    In my research I have found that oats don’t have gluten naturally. They get the gluten b/c they are processed in places that process other gluten-containing grains. Gluten-free oats ARE available – and very welcome by me. :)

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    Hi Sarah, well it appears I am a little late for this party! I have been gluten, dairy and sugar free for just over a year. Although most of my symptoms have gone, some still remain. Both my son and I have candida, thanks to anti biotics and now food allergies/intolerance. My blog has lead me to giving talks to people about how we cope as a family. This is such a scary area since one can feel so helpless because you have no idea what’s going on inside your body.
    Having to deal with people who don’t understand food intolerance is just so frustrating. Most just don’t get it. Thanks for this blog, it’s been the best thing I found all day.

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  • http://www.jossieloves.blogspot.com Jos

    My 11 yr old and I are both coeliacs and the biggest hurdles we face, daily, are food staff and chefs who don’t even know what gluten is so even when you question them you are never too reassured – and we are v choosey about where we eat (I got the worst reaction from eating at a v special hatted restaurant in Sydney last week – am still in crippling pain and when I spoke to the owner he was adamant they don’t cook with gluten – well duh they do – ask my gut!). Secondly – when M is hanging at other houses with friends – the amount of parents who say to him a little bit of gluten won’t hurt. They just don’t get it – the ignorance out there is a massive problem which coeliacs battle with each day. You def get to know your favourites and return. That’s why food blogs that list great gf friendly places are a god send. It’d be great to create a list on your blog Sarah as so many lurkers would have fab tips for throughout Australia. I am happy to create a list – I write reviews for one of the blogs! J xxx

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  • Coeliac and IBD suffer

    Hi Sarah,
    I love reading your Sunday Life columns and this website. Could you update your blog with Coeliac (English) not Celiac (American) spelling. Hope you don’t mind that feedback.
    Cheers…

    [Reply]

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    Thankyou for the rebuttal! We shared this on our allergy and anaphylaxis page http://www.facebook.com/aanaphylaxisaustralia

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    Great read on gluten intolerance.
    Thank you
    Lani

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  • bella

    I’ve had two caeliac disease tests (blood, which showed positive, and endoscope, which showed inflammation but no cealiac). I’m going for my third soon, hopefully just the blood tests. But if this goes positive like before, I’ll probably have yet another endoscope. All because the doctor’s don’t know what is making me sick. They diagnosed me with IBS but that is a disease they go to when they don’t know the answers. And as of yet they don’t know of the cure either.

    Give me luck!

    [Reply]

    Danni Reply:

    Good luck Bella. Have you had any sugar Malabsorption tests done yet.
    Might be something to talk you GP about.

    [Reply]

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