Should I be eating gluten if I have hashimotos? I mean, really?

Posted on November 25th, 2015

Oh, it’s a hoary one. I’ve swung a bit on the subject over the years. Here’s where I’ve arrived, but I’d like to get your thoughts, too. Did you watch ABC TV’s Catalyst program last night on the topic? Do so. It fleshes out the issue simply. Catch it on iView.

Image via NourishedKitchen.com

Image via NourishedKitchen.com

My reasoning, however, goes like this.

* If you’re coeliac, you should never ever eat it. 

* There is a connection between coeliac and Hashimotos. In a recent study by Alessio Fasano, MD, a recognised celiac disease expert, one half of the people newly diagnosed with celiac disease also had thyroid disease.

* I did the coeliac test – I’m not coeliac. FYI it’s a tricky test. It entails going back onto gluten for several weeks before doing the test. I’m not coeliac and I don’t carry the gene.

So, where does this leave me given I have Hashimotos?

Is there anything further to be concerned about? Yes.

* Gluten is toxic. Humans didn’t “evolve” to digest gluten – we don’t have the “molecular scissors” to break it down in the gut. Most people can tolerate it in moderate amounts, however. And can cope with the fact the villi in their gut is being compromised when they eat it. We are pretty tough little things.

* But if your health is compromised, you might not be able to cope with the havoc gluten causes. 

* First, the leaky gut is a problem. The leaky gut that gluten is said to cause then allows gluten to pass through the gut wall and into our blood stream. An autoimmune reaction can then occur.

* Our immune system confuses gluten with our thyroid gland. Weird, but seemingly true. Our immune system then attacks the thyroid, too. I’ve written about this before.

* Gluten damage can lead to AI, AND make it worse.

So do I eat gluten, given the above?

* For several years I didn’t eat gluten. This healed things a lot, I feel. I’m aware it was possibly because when you cut out gluten (like sugar) you cut out a lot of crappy food, and food additives.

* But now I do.  Just not too much. I suspect most of the planet’s issue with gluten is the amount we’ve been exposed to over the past few decades. It’s a tolerance issue. I don’t get symptoms very often now.

* I figure the angst of avoiding foods is worse for my health than being chilled about it all. I really do.

* I’ve also worked out stress and lack of sleep are far big contributors to my AI symptoms. I‘m better off focusing on these factors.

* Ditto sugar. So given the choice between avo on toast or an acai bowl dripping in sugar, the former is the far better pick.

* But I listen to my body. When I’m run down, or I’ve got on a bad spiral of eating, I back off from gluten for a week or so.

* I eat sourdough. The fermenting breaks down a lot of the gluten. And the stone-milled flour used is said to also make a difference. Some say the bleach and chemicals used in processed flour might be the problem.

* It might not be the gluten. The Catalyst show explains this well. The thinking now is that there are OTHER things in wheat that people react to that have NOTHING to do with gluten. e.g…agglutinins, amylase trypsin inhibitors and of course, Fructans (FODMAPs). I’ve been looking into the FODMAP thing and will report back soon.

What about you? How do you tackle the gluten issue?

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  • Guest

    Intrigued to hear your thoughts on the FODMAP experiment.

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    Sarah Wilson Reply:

    oh yes. will be sharing soon.

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    Anna Reply:

    SAME!! Am extremely healthy, however for years have been very irregular and become bloating/burpy after most meals. Unfortunately all my favorite foods are on the FODMAP no-go list – asparagus, celery, beetroot, watermelon and mango. Sigh. So I chose to ignore the guidelines and everything in moderation 🙂

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  • Urban Fringe

    I thought Catalyst presented quite a sane overview of the whole gluten debate – showing the potential damage of gluten intolerance to those with AI symptoms. About six months ago I went on the FODMAP diet and eliminated wheat (and most gluten apart from oats), but I realised that a lot of gluten free breads are filled with tapioca/soy/potato starch – which really isnt ideal either. Catalyst made this point too – there is no point is substituting glutenous products (such as bread/cake/treats) with GF ones are they are filled with sugar/bad fats and starch. At the end of the day one just needs to eat more a whole-food/stone-age diet and I think the occasional slice of sourdough isn’t going to hurt if you’re not coeliac…well, it doesn’t in my experience anyway. I agree, that sleep/hormones/stress play just as vital a role as nutrition in healing the body and making us feel what we feel! But I would still be interested ot hear how FODMAP friendly Simplicious is…as I’m beginning to think this may be the way forward!

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  • Liz Hardy

    I have hashis and no longer eat gluten. I have never had digestive symptoms from eating it but was tested for celiac and found to have the gene and elevated antibodies but not so high as to definitively have celiac disease. I also had an endoscopy, which showed no intestinal damage. HOWEVER, quitting gluten reduced my hashis antibodies and I’m also worried that at some point scientists will discover that eating gluten can cause damage to other parts of the body. I don’t want to be told in 10 years that scientists have discovered that eating gluten, when you have some sort of sensitivity to it, contributes to dementia!

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    Sarah Wilson Reply:

    If i had the gene, I’d do the same

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    Liv Reply:

    Hi Sarah,
    I’ve also tested negative for the gene but gluten still triggers my eczema. Even without the gene there still is the possibility of having non celiac gluten sensitivity.

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  • Leonie

    I eat sourdough bread, mostly whole wheat, that I buy from my local baker each weekend. I figure it’s minimally processed, I don’t have a gluten problem of any AI issues, and between the boyfriend and me, we only get through one small loaf a week, if that (leftover slices go in the freezer, naturally). My concern about many gluten-free products is that they are heavily processed,and often unlikely to pass Michael Pollan’s ‘would your great-grandparents recognise it as food’ test.

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    Sarah Wilson Reply:

    Totally. Sourdough breads have been part of sound diets for generations. We can’t get too hysterical. Our bodies can handle a certain amount of “toxic stress” with no real problem.

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  • Fiorella

    I’m doing similar as said above and eat gluten when worth it very sporadically. I’ve been gluten free before but it was until I started a low fodmap diet that I saw improvement. I always avoid gluten though if previously I have been affected badly with garlic or others fodmaps as then seems my weakened body can’t handle any extra bit of inflammation and will so react to a lot other things I would normally would not react. I don’t react to all fodmaps and also I then react very bad to things like tomatoes so I have to listen to my body and specific needs rather than names. Those days I’m like that I then go for a couple of weeks to a super plain and anti-inflammatory diet till I recovered. I’m now trying to figure out how to add back some vital fodmaps ( I’m at healing and reeseed gut stage atm) as I have read lately ( Dr Chris Kresser, Free the animal etc) about the importance of not avoid fodmaps forever. It’s very good at first stage to stop inflammation and taking the weeds out but not ideal long term as vital and protective strains of bacteria feeds exclusively on them, fructoligosaccarides, garlic, onion, chicory root, yacon insulin) so there is a big risk of losing important diversity if avoiding them for too long. I most certainly have leaky gut, low stomach acid that’s got worse after heavy doses of antibiotics after months in hospital due to serious accident but also last year have been told I have gastroparesis and couple of things drs can’t really find an explanation.

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  • San

    For me it was the carbohydrates. I have diabetes and feel much better when not eating bread. Gluten was probably never the problem for me.

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  • Rebecca

    Hi Sarah, This is the part I liked best about your post:
    ‘* I figure the angst of avoiding foods is worse for my health than being chilled about it all. I really do.
    * I’ve also worked out stress and lack of sleep are far big contributors to my AI symptoms. I‘m better off focusing on these factors.’
    I wish more people would talk about these two issues. Would you consider posting more on those two topics? I think they’re a huge part of the overall picture of health (and happiness), and yet mostly what so many experts on health focus on is diet and exercise, and what’s ‘right’ and what’s ‘wrong’.

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    Sarah Wilson Reply:

    leave it with me…

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  • Katiebobatie

    I take a very similar view. I also find that it’s more unhealthy to avoid gluten, as it just creates unnecessary anxiety around food. The quantity and kind of gluten consumed I think makes all the difference:-)

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  • MsLBD

    Sarah have you read any of the work by Ritchie Shoemaker where he talks about 26% of the population have a genotype that predisposes them to biotoxin illness due to being unable to purge these toxins? They build up over time and create inflammation in the body leading to CIRS Chronic Inflammatory Response Syndrome. He believes that this presents as a whole host of inflammatory conditions such a leaky gut which links in with the gluten intolerance etc. One of the main biotoxin culprits is actually mould. We had a massive mould problem in our last rental and had no idea I (and in turn) my teen daughter had the dreaded 4-3-53 gene. We are currently being tested for Hashimotos and need to go on a Low Amylose diet. This is why we have also been reacting to nightshade vegetables as well as gluten.

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    Sarah Wilson Reply:

    that’s so interesting. I grew up in a mouldy bedroom. I hated it. will look into Ritchie’s stuff.

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  • Jo

    If you read Dr Datis Kharrazian’s book “Why Isn’t My Brain Working” you will never eat gluten again. As he outlines in his book many people have no overt symptoms of gluten intolerance because rather than our gut reacting to it it is causing our immune systems to attack our nervous system and ultimately cause ‘leaky brain’ (as opposed to leaky gut) and brain degeneration. This can lead to a whole collection of illnesses but the most scary is Alzheimer’s and Parkinson’s. Few physicians or even neurologists are aware of this. If you want to know if gluten is really affecting you you need to do a complete gluten antibody screen which is a lot more comprehensive than the incomplete testing for HLA-DQ2 and HLA-DQ8 for celiac genotypes.

    The other point to consider is that fact that the wheat we consume today is not what we were eating a generation ago. It has been hybridized and deamidated and this has made it inflammatory to humans.

    For decades we were bombarded with ways to avoid heart disease (most of them have now been proved wrong). Now the gut is finally having its day. However, what amazes me is how the medical profession has really not paid much attention to the health of the brain or the connection that the brain and the gut have.

    The final thing to remember with going gluten free is that you need to remove it completely. Even a tiny amount can trigger an autoimmune reaction that can last for quite a while.

    As someone that has Hashimoto’s and has survived a burst cerebral aneurysm I’m just not willing to risk my brain health by continuing to consume gluten or any other foods that our body mistakenly identifies as gluten.

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    Sharon Reply:

    Amen! My son was diagnosed with Hashimoto’s at 12 and it presented with a severe headache that would not go away. He never had any gastrointestinal issues whatsoever prior to this. I was terrified he would develop Hashimoto’s Encephilopathy, which is essential the autoantibodies crossing the blood/brain barrier and causing inflammation to the brain. We went gluten free and eat a primarily Paleo diet because I didn’t want to replace the grain products we had been eating with gluten free products that are still processed and contain a bunch of crap. Even if we occasionally splurge, we still always keep it gluten free. To me, it’s a non-negotiable. Why would I want anyone in my family to eat the thing that made my son so sick? No thanks.

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  • Elizabeth

    Love what you’re trying to do Sarah. Yes, there is a problem with modern medicine labelling gluten as the only or biggest toxin in wheat based foods. This is a huge mistake – it doesn’t explain the whole picture. I quit all cereal grains (we’re talking everything here if it grows from a grass) about 6 years ago. Also dairy, as the cows eat grain/grass and toxins from the cereals get passed through the dairy to your system. I was told by a naturopath that cereal grains/grasses have certain toxins in them (not just gluten) that discourage animals from mass eating a crop. Every grain also has its own protein that can irritate gut linings (gluten happens to be a main one in wheat). Basically, she was talking about the toxic load these foods create. We can tolerate these toxins to an extent. But some people tolerate them less easily, or bounce back from eating them a bit slower (particularly those with anglo/celtic genetic backgrounds I was told). So you have to balance how much you eat of the stuff at one time (as you mentioned above) and wait for 10 days for it to clear from your system. Also, some of these foods are harder on the villi than others – like gluten. But really, cereal grains are more difficult to assimilate and break down in our body than many other foods. I’m eating grains again now periodically because I dealt with my toxic load by quitting these foods completely for a long period. My gut has healed a lot thanks to careful choices, gelatin and probiotic rich foods. I also try to make sure I eat the fermented versions of these foods as it gives my body a better chance to digest. And, on top of it all, I found when I experimented with cutting FODMAPS for a short time, I felt better too. I’m now much better at listening to what will nourish my body. I’m very grateful to say that all foods are back on the table, just carefully with moderation and fermentation!

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  • Jo

    Hi there,

    I’d be interested in Sarah’s thoughts on why we should eat something if it’s toxic to all (ie gluten apparently), just because ur bodies can handle it? What benefit is there (besides enjoyment)? And what about the argument that we find it hard to consume enough of certain vitamins etc it? (I may be confusing the no gluten vs no grains at all camps here)…

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    Rosemouse Reply:

    Just about everything we eat is toxic in large quantities – spinach, potatoes, broccoli, coffee, etc etc. Everything living has evolved some sort of defense to stop it being eaten (unless it wants to be eaten in which case it’s generally a sweet fruit and too much will still make you sick) – gluten is no different. The key is moderation, always. Our bodies have evolved to deal with the slight problems most foodstuffs pose – that’s part of the reason we have good gut flora. Most gut research these days is pointing to a lack of good flora as a reason for dangerous intolerances of a lot of natural foodstuffs.

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  • NikkiJC

    This really interests me. I have had on going belly issues since the birth of my son 3.5 years ago. I’ve been tested for celiac disease (don’t have the gene), had colinoscopy and gastroscopy and nothing wrong but my inflammation markers have been up on 3 blood tests. I also had a IgG test for food intolerance (which came back with all sort of things) but in the end I do think that it’s fructans that play up with me, as I knew I had trouble with onion and garlic, and by cutting out wheat and replacing it with spelt flours (which still have gluten) for cooking and spelt sourdough bread, I’ve noticed a real difference. Before seeing the FODMAP lists I would never have thought that wheat and onions contain the same thing (fructans).

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  • Jo

    I was disappointed and a bit sad to read this post today. Thousands of people follow you and many will probably now add gluten back into their diet if they aren’t noticing any overt gut issues. This will be detrimental to their health. As I said early, gluten today is very inflammatory and causes our immune systems to attack our nervous system.

    I believe that in years to come we will be talking about gluten the way we now talk about cigarettes. In the same way we now know cigarettes cause so many more health issues besides lung cancer, the issues with gluten go far beyond the gut.

    It’s not just about longevity of life either, more importantly it’s about the quality of life we are now living. And gluten (along with many other things) only causes damage.

    I don’t feel I’m angsting over my food choices. I actually feel that, instead of just completely handing over my health to doctors, I have also been able to make real changes myself. Making informed choices about what I put in my body not only makes you feel better but it’s empowering.

    I don’t think it’s a case of choosing ‘between the avo on toast or an acai bowl dripping in sugar’ (note the emotive word choice there…). Neither are good for different reasons.

    It’s a strange world when avoiding a toxic substance like gluten actually draws so much criticism. I’m tired of waiters asking me if I ‘actually have celiac disease’ and having to go into an explanation that I ‘actually’ have a different autoimmune disease and that gluten causes my immune system to attack my thyroid and my nervous system……maybe I should get some cards made up. 😉

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    Maryanne Reply:

    I’ll have some of those cards thanks! My 16 year old spent term one of this year vomiting 40-50 times a day and with shocking hyperthyroid symptoms: terrible insomnia, heat intolerance, fine tremor, anxiety/ panic attacks, hair falling out. Meds did nothing to bring his TSH or T3 down! Not coeliac apparently, Pituitary gland MRI normal (thank goodness!) In the end we took him out of hospital and put him on paleo AI protocol. Its taken a year but we know, from working it out ourselves, he is gluten intolerant and cross reacts to rice and corn in the smallest amounts. Don’t understand why anyone would think gluten in moderation is OK, and the Catalyst programme was as boring as i knew it would be, it didn’t even discuss gluten sensitivity even though they interviewed Allesio Fasano!!
    We don’t eat out, but he can tolerate a Grill’d burger occasionally 🙂

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    Indigo Reply:

    I, too, felt sadness and disappointment as I read this post. I also have Hashimoto’s, and have never had gut symptoms from eating gluten or a number of other foods that have been found to be detrimental to the gut and to contribute to autoimmunity. However, through a 100% avoidance of gluten, and these other foods, my antibodies have dropped from very high to almost non-existent, and as I’ve done my research, it appears that autoimmunity is actually a symptom that can be telling us that we can’t handle wheat. Once, I would have totally freaked at the idea and stress of no gluten, added sugar, etc., but as the positive results begin to accumulate, what once took effort becomes effortless. To me, there is no comparison – whatsoever – between the short-term pleasure of eating foods that may exacerbate autoimmunity, and being able to reclaim my physical and mental health and well-being!!

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  • nupaleo

    HI Sarah,
    I just got diagnosed with Hashimoto’s and so glad I came across your site. I’ve been really tired and not able to do much but I’ve eliminated gluten and caffeine. I feel 20 % better so far. I’m hoping following the paleo diet will get me back up and running. I was pretty disappointed about the diagnosis but it seems like it is manageable so feel encouraged with what is out there and your blog. Thank you so much for starting this and I look forward to gleaming any gems I can.

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  • Coralie Eichler

    I have ulcerative colitis – pan colitis to be precise. I was diagnosed in 2008 and tried every approved drug available. In 2013, when nothing worked to control symptoms I miraculously stumbled on the Specific Carbohydrate Diet. Google it. Within a few days of doing the diet all of my symptoms had gone. I have been on the diet ever since. I am well enough now that I can have the odd grain, sugar or lactose item without any trouble. I have noticed, though, that it is very easy for the weight to creep on when consuming these products. On the SCD my weight is constant and I never have to worry about it.

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  • Coralie Eichler

    I would like to add that the SCD is suitable for people with UC, Crohn’s, Diverticulitis, Autism, Celiac and Cystic Fibrosis. Get hold of the book ‘Breaking the Vicious Cycle’ by Elaine Gottschall from your local library. It’s the only recipe book I use and once you know what food you can eat you learn to be creative and make things like pizza and muffins without any grains or sugar.

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  • Coralie Eichler

    I did FODMAP too. Bad, bad, bad.

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  • I have hashis too, and i found that quitting gluten and dairy gives me way more energy. I quit gluten first, and after 6 months my dizziness went away. And my orthostatic hypertension went away too, after about 6 more months.

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  • Amber Jones

    Those who have coeliac disease should not eat gluten (ever). Everybody else should enjoy the delicious stuff…..it does not effect the villi of people who do not have coeliac disease. Clearly there are many people out there who take what you publish on this website as gospel, so please do your (scientific) research before writing things like ‘gluten is toxic’ and other false statements included in your post.

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  • Briony Ford

    Hi Sarah, I’ve just been diagnosed with Graves Disease and I’m pretty confused trying to cut through all the information about diet and thyroid. However your articles are literally the only things making sense right now so thank you. I intend on starting the I Quit Sugar 8 week program on Feb 4th and I also picked up a copy of Simplicious, very excited to get my hands messy! I think for the moment I’ll cut gluten as I don’t stand to loose really? If you can point me in the direction of any other solid sources on Graves would be greatly appreciated. Thanks again for sharing x

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  • Veronika Walder-Smith

    I have many food chemical intolerances, salicylates, histamines and oxaltes and eat low fodmaps. For the past 2 years I have cut out all fruit, most vegetables many oils including olive oil, coconut oil as they are very high in salicylates. I have Hashimotos and also cut out gluten and dairy.
    My gut definitely improved as did some other things. About a month ago I started drinking full cream jersey milk and eating ricotta and felt absolutely wonderful, my sleep was amazing, possibly all that calcium.
    A week ago I had stomach bug and only ate white baker’s delight hi fibre bread after 2 years gluten free. Not only did I not have a negative reaction I had a sense of calm well being I haven’t had in a long time.
    It has led me to question the whole dairy free, gluten free thing. If one third of people have a problem with gluten then two thirds are ok with it and maybe even thrive? same for dairy?
    I wondered if anyone had any thoughts as I really don’t know where to go from here.

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  • JeanineDC

    Even if one is not celiac one can be gluten sensitive which carries pretty much the same symptoms except it is an immune reaction not an autoimmune one (so a little less problematic overall). Alessio Fasano has been doing research on this but they themselves acknowledge that their knowledge of this is about 30 years behind that of celiac disease so no idea yet how it all works. In my view anyone with autoimmune or neurological issues should definitely abstain from gluten. I myself seem to be quite sensitive but the symptoms can sometimes take months to show up… in other words, I can eat gluten in small amounts for over a year and then get a whammy of symptoms. Not fun and it has happened to me twice already. Never again.

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    Leonie Reply:

    I was just wondering, how can you tell that the symptoms months later were caused by gluten? (meant with no disrespect, I’m just curious how people narrow these things down)

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    JeanineDC Reply:

    That is a very good question indeed. I guess the answer is a combination of tests, trial and error, and good knowledge of your own body (which comes with time). In my case, I have had tons of tests done. Most of them showed nothing wrong which helped to discard other causes and a few showed that I had a problem with gluten, which is what prompted me initially to take it off my diet. These were a regular food allergy test which showed a small allergy to wheat (IGE) and a food sensitivity test (IGG) which showed I am very sensitive to gluten, wheat, and yeast. My body has become very sensitive since I stopped eating gluten as well, with the consequence that I can now feel symptoms loud and clear. For example, a few times I have eaten out I have felt lightheaded, short of breath, or extremely sleepy. This never happens when I eat at home and has happened when I’ve eaten in different places so it cannot be tied to a specific place or food. After I feel that, I get about a week of crushing fatigue. Until recently, I thought if I got over those episodes I could keep going normally, except recently I realized that after a few of those episodes I have a major flareup of symptoms that leaves me feeling very sick and almost unable to leave my house. If I look back, every time I have one of these, I had had isolated symptoms for a while. So, I don’t have a test or specific strategy I can share, but just to know your body and pay attention to the signals it sends off no matter how small. Also, I have read lots of books on autoimmune, hormonal imbalances and gluten and I can very much relate to may of the scenarios presented (for example in Gluten Freedom, Alessio Fassano’s book, where he shares the case of two persons with gluten sensitivity (no celiac) one of whom could not even walk anymore until she was taken off gluten. Do I know 100% that gluten is the main problem? Not really, but I have seen my body react badly to it on enough occasions to know that whatever it does, it is not good for me.

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  • nancy

    I don’t feel sick when I eat gluten. But some times with wheat I do. I have Hashimoto’s and I am not sick at all yet I din;t know I had it. Also I was told not to work out but I feel much better f I do.

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  • Pam Greene

    I was diagnosed with Hashimotos 30 years ago. About 6 years ago my eyes became so dry that I was in horrible pain. After a few months, my doctor put plugs in my tear ducts which helped tremendously. A few months ago, my eyes again became dry again, and I was in constant pain. My eye doctor checked, and the plugs were still in my eyes. He wanted to put plugs in my upper tear ducts also. I had just read about the link between gluten and Hashimoto;s, so I decided to try to be completely gluten free for 6 months to see if it would help. After about 4 weeks, my eyes stopped hurting! No dryness… no pain. I have not done anything else different. I am hoping that, as I continue to be gluten free, some of my other symptoms of Hashi’s will disappear also!

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  • Rachel Understein

    I have Hashi, and I did not have an issue for a long time eating Gluten until I then well did!! What I somehow discovered as well is that it may not be because of the gluten but because of the GMO’s or Roundup over the wheat when it has been ingested, causing the breakdown of the villi and causing leaky gut. I also found out because of this I developed an Allergy to Wheat, Buckwheat, and many others. I think there could be many reasons causing an inability to consume Gluten/Wheat/or Gliden. Maybe this helps?

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  • DeeB

    I have been following the gluten debate for 40 years. I am trying my own sourdough as it is impossible for me to source true sourdough. All sourdough I’ve come across is made with vinegar not from a fermented starter. I have Hashimotos, ankylosing spondylitis with sacro-ileitis and uveitis and inflammation in the bowel. I wonder what is left?

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  • Angie

    Hi Sarah

    I’m new to your world and have recently picked up Simplicious and found we are exactly on the same page. I have Hashimoto’s and MTHFR gene mutation. Have been gluten free for approx 5 years and Paleo for approx 2. As a result of the minimal carbs on
    paleo, have sufferred an adrenal crash and terrible insomnia. Since adding in the carbs, losing the caffeine (now that was tough), and having the occasional gluten treat (accompanied by my ever present bottle of digestive enzymes) I have let go of the everyday stress about what I can and can’t eat and have found it has made the world of difference to me mentally. Thank you for doing what you do! It’s great to now have you as an inspiration/resource. Angie V

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  • Erin

    I went gluten free and it did nothing for my hashimotos. My antibodies didn’t decrease. I don’t believe gluten free makes a difference anymore. Anyone else have a similar experience?

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