GLUTEN confusion, please de-mystify

Please can you help me understand what glutens, with thyroid problems, we should avoid? Some weeks ago I cut out gluten, or so I thought, and have been drinking delicious milk-alternative Provitamil (I'm vegan) and eating oats believing them to be gluten free. I have felt much better than before and now, having stopped drinking the Provitamil, the depression has come back. I'm wondering if this was coincidence since receiving the explanation of glutens below though my gut feeling (!!) is that something in the Provitamil really helped, possibly the added vitamins. Please can some of you knowledgeable and experienced people tell me which glutens you avoid? All? Or just some?

I found this note on the internet which may be of interest:

“All grains contain proteins, and the proteins in wheat, barley and rye are generally called glutens. While you won’t hear the name mentioned as often as ‘gluten’, if at all, the specific proteins in oats are called avenins.

If you google ‘do oats contain gluten?’ and find yourself on The University of Chicago’s Celiac Disease Center, you’ll learn that avenins are not glutens. Many blogs will quote this or a related source.

However, this is not actually the correct picture. The Coeliac Australia website goes into a little more detail in regards to some technical terminology and testing processes. And this reveals a different picture of oats.

As they explain it, the term ‘gluten’ is generally used to describe a prolamin protein fraction that is associated with coeliac disease. This prolamin protein occurs in wheat, barley, rye and oats.

However in each of the grains the protein goes by different names: gliadin in wheat, hordein in in barley, secalin in rye, and avenin in oats. So, in fact, all oats naturally contain the prolamin protein, generally known as gluten, albeit in a slightly different form.”

35 Replies

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  • I buy GF oat bran to make muffins and I have used GF porridge oats in baking. I have gone GF but I'm not coeliac so if I am accidentally glutened then it wouldn't be the end of the world. I have a friend who is GF but who can eat GF oats but as far as I was aware some people can't eat GF oats. Not sure that's the answer you were after but I think it depends on why you are GF and how your body reacts or just avoid them altogether.

  • Thanks.

  • My grandaughter is acutely coeliac and she will tell you that whilst pure oats are gluten free the facility they are milled in may not be

    Therefore you need to only buy specific brands that are in coeliac society handbook

  • Thanks reallyfedup123 and Fruitandnutcase for your replies.

    My confusion is not about oats, but about whether those of us with thyroid problems need to avoid all those forms of gluten or just some.

    How do you know?

    Did you all do trial and error?

    Is there some guidance somewhere?

    Having been so much better: less tired, less pain and less depressed recently I am very sad to be feeling depressed again since cutting out the Provitamil. It is delicious and as a vegan avoiding gluten and all forms of sugar other than in fruit as well as many of the pulses, a lot of vegetables and most things red, food these days is unexciting so it's a real pleasure to have something I can make a nice cup of coffee with, and hot drinks are so comforting when life is tough. It will be a loss if I can never have it again.

    Also, since my symptoms come and go (though I test 'negatively' for Hashimoto's) it's almost impossible to tell whether excluding actually makes any difference, so your experiences are very helpful to me.

    Bit of a grump aren't I! Humour has left - obviously had enough of me!!

  • I do not know the answer to this question so I'll be following. This provitamil contains soy? And why have you also stopped pulses? And red food?

  • Hi Brubru and thanks for your reply.

    No, Provitamil does not contain soy. I can eat some pulses but a lot of them and red foods and some nuts trigger ME, though now I doubt the ME diagnosis and think the fatigue is related to the thyroid problem.

    Cheerio for now.

  • Ok I understood now. when you stopped these foods was due to ME. I hoe you get some answers soon. :-)

  • The molecular structure of the thyroid and gliadin, one of the proteins found in gluten, is very similar. Once gluten is ingested and gets through your gut and into your blood stream, the immune system mounts a vicious attack against the gliadin proteins since they’re not supposed to be there but unfortunately due to this similarity the thyroid becomes under fire and fiercely too.

    This was one part of the gluten's harm. The remaining points towards the fact that current wheat and grains we eat nowadays have no longer any resemblance to the original varieties that were grown 1000 of years ago. They are hard to digest, by any human being, and remain longer in the guts causing bad bacteria to feed on them and to develop beyond control at times. This imbalance in the guts, between good and bad bacteria, inhibits the T4 to T3 conversion where a great deal of it takes place in the guts.

    Moreover, gliadin's sticking to the guts causes small incisions/cuts into the intestinal wall. This leads to what's refer to as a leaky gut. So fragments of food escape into the blood stream triggering more attacks and resulting of many food sensitivities and allergies.

    Final points for this specific discussion is that gliadin inhibits the absorption of iron and zinc as well as complex amino acids. You know the rest about both deficiencies on health in general and on thyroid specifically.

    The call is yours...

    I took a leap of faith nearly two years ago and I have never regretted it in spite of the fact being told off by many doctors for doing so. Like yourself, and possibly many readers, too, I have tested negative on Hashimoto's and Coeliac's.

  • Hi Melanie London and thanks for this helpful reply, especially about zinc.

    When you say you took a leap of faith, do you mean that nearly two years ago you became wheat free?

    Do you mean that this is all that is needed, that you only avoid gliadin, rather than being gluten free?

    Do you eat the other three glutens, hordein, secalin and avenin found in barley, rye and oats?

    This is the bit I can't find an answer to, everyone talks about being 'gluten free' yet the explanation, which you've written so well, only seems to talk about gliadin.

    Do you know the answer to this, do our bodies confuse those three glutens as well as gliadin, are they all so similar in molecular structure to the thyroid?

    Cheerio

  • The reason that I have placed focus on Gliadin is as much as it is one component of 'gluten' , unfortunately it can be found in all grains.

    There are over 200 forms of it and can be found in all what you have mentioned and more.

    Yes, I have avoided wheat, all grains, sugar, and even dairy.

    The new and modern genetic structures of all of these species make them so distant from what our body's genetical disposition so to recognise them let alone digest them.

    A few interestingly informative publications that i have read and may help shed more light for you, if you can have access to are:

    - The Wheat Belly by Dr William Davis

    - Grain Brain by Dr David Perlmutter

    - Brain Maker by Dr David Perlmutter

    You can also find many of their excerpts and essence within the authors' interviews on youtube.

    I hope this helps.

  • How much of the milk do you drink per day? I doubt there is much vitamin content in each ?carton, but if you are very, very low, or drink excessively maybe that is why it makes a difference?

    Have you had levels of Vit D, B12 etc done recently? Being a vegan and on a restricted diet may have made you very deficient?

  • Exactly Silver_Fairy, there are vitamins B12 & D, probably D3, in the milk, the ones we vegans can only get from supplemented foods, and since we only need tiny amounts just half a pint or so a day probably kept my levels adequate.

    You can see why I'd rather keep drinking the oat milk if oat glutens are not bad for thyroid problems.

    I do hope someone can answer my questions about the glutens.

  • Have you tried emailing the oat milk company?

  • Yes, Silver_Fairy, the company has been brilliant and supplied the information I pasted into my initial query. But it's not the contents of the oat milk that are in question, my question is which glutens do those of us with thyroid problems need to avoid? How do you know ? Etc, etc as posted already, I won't go on ...!

  • Hi, I am vegan, and also gluten and soya free. I avoid all gluten, including oats. I drink almond milk. I wouldn't rely on a milk to provide the vitamins I need, as they are in tiny amounts and not always in the form needed to be absorbed (especially b12, which should be methyl b12). I supplement b vitamins, d and k. I feel if I am giving up bread, pizza and pastry I am not going to get glutenated by an oat drink!

  • Thanks MidnightBlue, nice to meet another vegan. Almond milk is too expensive for me and I'm unsure about the phytic acid.

    Hot drinks are my comfort, I've tried many different kinds of milk and absolutely love this oat milk, this is why I am hoping someone can answer my questions. I am really hoping I don't need to give it up.

    May I ask what you have for breakfast?

  • Sorry for delay in responding, I have been away without wifi. I don't think anyone will know if the gluten in oats will affect you. Some coeliacs can have oats and some can't, without constantly monitoring our own antibodies it is not possible to say. I have given up gluten even though I'm not coeliac because there is evidence to suggest that this will help lower my antibodies. As I am not coeliac I don't get a physical response to gluten so I don't know for certain which types of gluten affect me, so to be safe I exclude them all.

    I don't really eat breakfast, but on the days I work I have a piece of fruit or a naked bar around 10-ish. Have you thought about rice milk?

  • Here is another view point about 4 foods to avoid and why, oat is one of them.

  • It is very interesting Melanie, thank-you, but there is a huge flaw in this - if it is so harmful to everyone then how come there are so many very healthy people out there? Just within my own family, I have two daughters, in their 30s. One is like me, easily tired and in almost constant pain. She eats very very healthily, her partner is very interested in eating healthily too. The other daughter is beautifully slim yet shapely, could have been a professional ballerina, she works as an equine vet, she has high intelligence and can spend hours doing hard physical work. She eats what we call rubbish, mainly white bread, oats, cornflakes and pints of soya milk, and chocolate. She is never tired, even if she's been up all night treating a horse, when she finishes her day she often goes out and spends hours building a fence around her field, then walks her big dog, grabs a bowl of oats and cornflakes then plays her harp, continues studying, chats with friends and finally goes to bed. She is almost never ill, not even colds or tummy bugs. At the weekends she drives for 3 hours to get here, walks the dog, sorts out her horses, spends the weekend riding or working in the field here, gets up at 4.00 am to be back at work by 8.30 am, works all day with no breaks then is on call through the night and works through the following day. Her father is very similar, eats rubbish, very slim, never ill, plenty of energy, over 70 and still working full time.

    So although I believe for some people some foods are harmful, there does seem to be a lot more to it.

  • Thanks MidnightBlue, for your thoughtful reply. Rice milk is where I started but I much prefer the oat milk. Suppose I'll just have to cut all of it out for three months and see how that goes.

  • I was diagnosed four months ago with under active thyroid and for the last two months have been gluten free. I have also been diagnosed with Hashimoto's recently too.

    I eat oats for breakfast every day, either raw with banana, sunflower seeds and milk or yoghurt, or made up as porridge. I do not buy 'gluten free', just ordinary oats at a fraction of the price. I am not coeliac so have not gone to the 'nth degree' and cross contamination has not affected me. So I suppose I am about 98% gluten free because of this. All I can say is that I feel loads better and my symptoms have really improved. I buy gluten free bread, biscuits and crackers etc., and always request gluten free when I eat out.

    I was beginning to think that I would never start to feel better but in the last couple weeks I have really improved. I take 125mcg levo and I also take 1000mgs of vit C with zinc (20mgs) and a vit B complex tablet every day. Last week I foolishly ate a couple of Ferrero rocher chocolates, forgetting they had wafer and possibly wheat in their composition, and boy did I know about it the next day. It took me a while to work out what could have caused my symptoms to return but they were the only thing it could have been. I was with friends and they were being passed around and I ate them without thinking. So I really do know when gluten affects me. Oats are fine for me, thank goodness, because like you I love them and they are an important part of my diet.

    Everybody is different, and one thing I have learned through this forum is that we must manage this disease largely ourselves. We know what suits us and what does not, often what suits one person may not suit another, and much is down to trial and error. But it is through the advice and information on here that I now believe I am starting to feel somewhere near normal.

    Good luck.

  • Do you have high antibodies? I do and I'm looking into reducing mine and researching all I can about gluten free. I was told by the Endo that you can never get rid of antibodies but reducing them has to be important I guess?

  • Hi Gill-56

    I don't have high antibodies so I don't even know if avoiding gluten makes any difference!

    I am sure, absolutely certain, that reducing your antibodies if they are high is important and probably helps you feel much better.

    Are you avoiding oats? There doesn't seem to be anyone who has read my post who knows about the gluten in oats and thyroid problems.

  • Thyr01d thanks for the info. I'm currently eating organic 'safe' oats as I've not started the total gluten free journey yet as diagnosed last month and want to get as many facts together as possible. I intend to learn about the reason for avoiding oats as I certainly will stop if they go against the gluten free route! I read something earlier on here and will try and find it. Some people say avoid and some say ok.

  • Hello again Gill,

    Did you read my starting point with the excerpt from a University about the different kinds of gluten which was sent to me in response to a query about oats and gluten?

  • Yes I did. It would be good to fully understand what is considered the best way forward, regarding oats and gluten.

  • Thanks vcle for this helpful response.

  • How long does it take to reduce Thyroglobulin anti bodies? A blood test in July recorded high levels and the results I received yesterday from Blue Horizon show a small drop but disappointingly not as good as I hoped. I have been 100% GF since July.

    Should I continue to be GF?

  • I'm sorry Suzy61Taylor but I don't know about antibodies, I think you'll get some helpful replies though if you start a new post.

  • Hello I have had major digestive problems too and finally cut right back on my gluten intake, the usual breads pasta oats etc....I was tested for celiac but it came back negative with the doctor telling me to go and fill up on gluten and be re tested??? Wtf? What sort of madness is that?

    Anyway I researched it more only to discover that there is gluten in hell of a lot of products including sauces, soups and is hidden in food stuffs in the forms of thickeners etc.....it's a mine field....

    I know I feel so much better off bread although I love the stuff it makes me feel ill so I choose not to eat it, I have gluten free when I can and take that gluten free option if it's there. I FEEL better!

    I know that OATS were horrendous for me and my tummy blew up like a barrage balloon!!,

    I find that juicing regularly helps, filling up on green stuff and proteins is good for me. I take APPLE CIDER VINEGAR which is amazing! It raises the stomach acid (many of us suffer from low stomach acid) I still love a good old cup of tea but I've limited myself to one cup of coffee a day and even that is being slowly replaced by lemon and ginger first thing.

    It's a mine field it can be utterly miserable especially if you are a busy person the last thing you want to do is come in and having to start preparing food rather than just reach for the toaster!!!

    I do feel better for avoiding gluten.

    as for the depression, it's a subject which is in my experience very individual. I've chosen to go antidepressant free. I think the thyroid issues have cause a lot of it, the health issues we battle daily are part of it....and it's also how our minds sets are..... I can easily go into fuc*k it mode and feel sorry for myself. aTake away the symptoms by looking after ourselves is half the battle. Talking to others with the same issues is a massive help and support and being willing to be really proactive.... That's MY story and I battle some days to even get my head off the pillow.

    I'm a year free of anti depressants now and although I've been in some really black holes I have found a lot of things to help.

    Hope tha is of some help ☺️

  • Thanks Bioluminence for your reply, it's really nice to read your story.

    You are limiting your coffee because of the caffeine aren't you, there's no gluten in coffee is there??!!??

  • lol no, i kind of listen to my body and to be honest I've gone off it. I love a cup of it now and then...;-) xx

    i like to try gluten free recipes and i love making my own fresh soups and juices, very easy although sometimes time consuming.

    how you doing?

  • Doing more or less the same as you I think, I too love making fresh soups.

  • If you felt better drinking the milk, why stop? Just enjoy it!

  • Hi rustyspokes - love the name!

    Because there is so much evidence that those of us with thyroid problems are made worse by gluten and there is gluten in the milk-alternative.

    I am still very unwell so I do whatever I can to minimise the symptoms I suffer from. For instance, I have a ferritin deficiency which can sometimes be a consequence of absorption problems caused by gluten.

    We need ferritin to be top of the range, ie 300, and mine is 15, which will be preventing my body from using thyroxine and making matters worse.

    I hope that's clearer.

    Or did you mean why don't I drink cow's milk?

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