I'm long COVID and currently on low histamine anti inflammatory diet with recommendations to go gluten and dairy free. I do eat GF pasta and bread but mix in the other stuff as I enjoy that more. Just wondering if anyone has found improved health with GF diet as hypo folk have been known to have leaky gut. Any anecdotes appreciated!
Anyone benefited from being gluten free? - Thyroid UK
Anyone benefited from being gluten free?
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celticlady
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Luckily I found it was just barley especially malted rather than gluten that caused me gut issues along with buckwheat and amaranth so I don't thinks it's that straight forward, I too have histamine issues and can't tolerate nightshades, dairy free was a game changer and thankfully I noticed the difference within days and it's much easier to do 😅
Thank you. It's frustrating as I haven't any definitive diagnosis of anything eg HIT/mcas/mecfs. And my reactions are neurological which makes me highly anxious/SOB/off balance but long COVID also causes this. Would love obvious stuff like running nose, eyes water etc . It's taken YEARS to work out the connection with histamine as antihistamines reduce symptoms. As for gluten.... another minefield to navigate. Dysbiosos could be the culprit. No diahorrea or pains so not sure about it
No, I've not had a diagnosis for these things just got feed up with bouts of nausea, migraines and a generally poisoned feeling which would last several days
yes I had that horrible nausea and poisoned feeling too, and haven’t had it since going GF. But I’m sure for me I also felt that way because of really bad SIBO, as felt way better when that was treated. Listening to your body is often as good as a test
I'm just getting over dabbling with yellow split peas 😖
Oh dear, that emoji says it didn't go well?
Lets just say I feel infinitely better now it has left my system 🙃... tight neck, wired brain, nausea and uncomfortable bowels are abating, shame as it tasted great
😞 Could you substitute lentils perhaps?
Tried lentils, thought peas were less of an issue but it seems they trigger the histamine reaction.... I really ought to just give up on experimenting 🫤
I'm ok with red lentils in small quantities. Frozen green garden peas are also ok. But not split peas and definitely no chick peas! 🤢
Crazy isn't it, I've now sprouted and dried them ready to mill, wonder if I can get away with adding a little to other things as a protein powder?
That just sounds like being a glutton for punishment - I'd give up (i.e. go glutton free! 🤣 )
I did a food intolerance test a few years before and whey protein was something my body is intolerant to. I’m not celiac as tested but there my stomach seems to become bloated or become tired when I take gluten, wheat, barley, yeast etc. It’s an odd combination…Haven’t figured out the pattern yet though. And my body can’t seem to digest shell fish related food too, it seems like some sort of protein related digestive component is missing from my body?
I would be very wary of food intolerance tests, as they have not been shown in independent studies to be reliable. Food intolerance tests are based on the measurement of IgG - however IgG rises in response to when you ingest food. So for example, if you eat a large portion of yoghurt, your IgG levels would rise as a result. This is NOT a sign of an intolerance, it simply indicates that your body is responding to the increase in dairy, which is a natural reaction and definitely not synonym with an intolerance. In fact, if you head the advice of the food intolerance test, you would actually restrict items you can tolerate.
Companies offering food intolerance tests have actually been reprimanded by the advertising standard agency for making misleading claims and the British dietetics association has also put out information saying that IgG tests have not been shown to reliably identify food intolerances and should not be used as a diagnostic tool.
bda.uk.com/resource/food-al...
Thank you for sharing, Tina_Maria ! Hugely appreciated! I was just about to take another of the tests before this. Now I’m going to ask for a refund.
Backstory about the food intolerance, some of the food I’ve eliminated is also partially due to bloating after consuming certain food. And I had extreme fatigue after eating certain foods. Like I definitely felt bloated for many hours after eating bread or drinking milk. So in a way, the test “validated” my body’s response to the food and raised more awareness for me about food intolerances. Also I used to get tummy ache after eating crabs or prawns (and I kept eating them 🤣) which I never understood. Obviously now I know the tests are not accurate so I would try to go for an elimination diet rather than a test which is not accurate.
Oh no so sorry about the split peas… since I had SIBO pulses are generally not my friends! Although ok with the humble green pea
Yeah, I keep trying but they just don't suit me 🙃
~Was suggested by a Specialist many years ago to try removing gluten and dairy - the best thing I ever did.
Transpired I was not coeliac but a sensitivity to gluten and had maltase deficiency.
Dairy always triggered excess mucus plus I was lactose intolerant.
Whilst now living with a range of multiple health issues I do believe the gut/brain connection is a significant and complex one.
Good luck and best wishes~
Thank you 🙏
Curious, how did you figure out you had a maltease deficiency Megams ?
I underwent a biopsies of antrum for rapid urease test + histology, and from duodenum for disaccharidase + histology~
SlowDragonAdministrator
Post discussing gluten
healthunlocked.com/thyroidu...
Ideally get coeliac blood test BEFORE cutting gluten out (but you do need to be eating high levels of gluten for few weeks before the test)
Thank you, just discovered the other thread. No major reaction to gluten but post COVID complicates things... histamine etc . Apparently coeliac can be asymptomatic but a neighbour told me she had weight loss-no other symptoms -andveas diagnosed coeliac. My weight loss could be damaged gut/dysbiosos common after COVID.
I went totally GF in 2014. I had Graves’ disease in 2012/13 and then developed sero negative inflammatory arthritis in 2014 and decided another autoimmune condition was one too many. I had also eaten French sticks, croissants and pains au raisins all the way from Calais to the Mediterranean and I ended up looking like a puffy blimp. I asked my husband to take a photo and a close friend didn’t even recognise me. I tried an over the counter gluten test which was negative but I went ahead anyway - would advise having it done officially if you decide to go GF. There is no way I will go back to eating gluten just to be tested to see if I am coeliac - assuming I could even get an appointment then persuade a GP to pay for the test. I think I am probably just gluten intolerant.
To cut a long story short, I have always tested regularly using Medichecks home finger prick blood tests and since I started being GF my thyroid antibodies have come down massively, I realise that it could just be that it was time for them to drop rather than being GF but being GF has made a massive difference to the IBS I have had since the 1980s so for me it has been worth it, especially as I don’t find it difficult to do. Everything I cook / eat at home and outside is GF, I don’t buy a lot of ready prepared things like bread, cakes and biscuits because in general I find them a bit sweet and sickly so it doesn’t cost much more than regular food.
Eating out isn’t a problem either, I tend to look online at menus and if a restaurant doesn’t have a decent selection of GF dishes then I go elsewhere. A friend who is coeliac told me about coeliac.org.uk/home/ so I joined and got their handbook that lists a massive amount of information about food, ingredients, restaurants and recipes, if you are serious about going GF then it is money well spent but you’ve got to be totally GF - you either are or you’re not.
Good luck if you give it a try.
Thank you for your help! Oh to have a definitive diagnosis of anything...my GP isn't offering any referrals or testing.
Years ago I was tested for coeliac disease and it came back negative. As a result I didn't try going gluten-free for a long time, believing it would make no difference to me.
Eventually I decided to give it a try anyway, and to my surprise I did feel noticeably better in just a few days. I stayed 100% gluten-free for 5 years, and then relapsed - big-time! - and my gut health started deteriorating quite quickly. I have never managed to get back to being 100% gluten-free for a long time but I do try - repeatedly. My gut health does improve when I stay gluten-free for a few weeks. But I do have trouble with relapses. 
I wonder why the relapses happen.
Lack of willpower when I see jam doughnuts.
Oh I’m sorry celticlady, long Covid must be tough with thyroid issues too. I’ve got hashimotos and have been GF nearly 4 years and my gut is definitely better, but I had awful SIBO back then and I think that was one cause of the fatigue, bloating, poisoned feeling and nausea. The last three things went after SIBO was treated. Still always tired! Occasionally l used to have a little gluten, mostly no ill effects. Scared to go back to how I felt so I’m sticking with GF for now. For me the good outweighs the inconvenience and missing good old gluten products! However note that a lot of shop bought GF foods like bread, cakes and biscuits are full of things that aren’t great for your gut, I have a little GF bread & sometimes wonder if a pure sourdough or homemade bread with wheat flour would be better for me! I do make my own GF which is purer but takes a little getting used to 😆 I actually love it now. Teff flour is delicious but makes brick like bread! Also avoiding dairy helped me, although I do still eat butter and Parmesan, but milk (cooked is ok), yoghurt and softer cheeses give me instant sore throat and mucus. It’s tough navigating it all, especially if you’re low histamine and anti inflammatory diet too, experiment and see what works best for you. I did try very restrictive diets and didn’t feel great on them although gut did feel cleaner if that makes sense, I was also miserable and constantly stressing about what to eat! Hope you find what works for you and feel better🤞
Thank you! How did you treat sibo and was it a breath test? I think that's my next move. So drained at the moment. I'm looking at gf bread recipes. Pasta is ok but with no definitive diagnosis it's hard. My symptoms aren't chronic, reactions are relatively mild. Gastric acid has settled but will get a microbiome test at some point.
Yes breath test through my gastroenterologist. Was prescribed Rifaximin and metronidazole which worked well, my very pregnant looking tummy finally deflated. Also tried berberine and oregano (took before or after, not with the antibiotics) which I think helped, but the antibiotics helped the most. I don’t like taking them but it was necessary!
Microbome test for me showed a parasite (nothing dramatic, apparently quite common) so think the antibiotics and herbals might have helped with that too.
With bread sometimes it’s the yeast causing problems.
I also feel v tired if i have too many carbs. But I love them and need them so just try not too overdo. Also try to keep sugar consumption down.
Yes GF pasta is ok but breads often full of fillers, there are lots of GF flours you can use and bread recipes online. Have you got a bread maker? I use one
Good luck! 🙌
Yes, hubby does that, last GF loaf Iike s brick but don't want to discourage him!!
Here’s my experience I’m coeliac with Hashimoto’s hypothyroidism of my experience on gluten free diet - basically it has done nothing for any symptoms, or my thyroid TPO antibodies the only positive for me is hopefully ward of several vulnerabilities us coeliacs get.
Firstly please consider testing (if you haven’t already) before embarking on omitting anything in your diet … you can read more on coeliac U.K. website for advice regarding gluten… no one should advise a gf diet without testing first.
If you are getting symptoms from eating gluten your GP should run a test and you do not have to pay for this, GP should be sure this is ruled out before anything else … you have to be eating enough gluten for this test… most who go gluten free before testing that I know, have all had negative results afterwards and I fear it’s probably because there’s not enough gluten being eaten to trigger an immune response and how reactive you are to gluten is no indication at all of severity for coeliac disease but there is an amount of gluten apparently that should be consumed to trigger a response, if the individual can tolerate this test.
Being diagnosed will give you thorough checks throughout your life and appropriate medical care required - I won’t go into those but various conditions we are more susceptible to… you’ll not be checked or considered for those if not diagnosed and these can be missed by just going gf if you suspect this… however at the moment going gf is the only help for coeliac disease but things to consider if not getting guidance from a a dietitian… which you will be referred to along with relevant scans for bone health and annual review of nutritional status and more.
There’s the risk deficiencies within a gf diet predominantly low B vitamins, fibre calcium etc as gf items by law do not have to be fortified like gluten flours cereals are… going gluten free if reliant on manufactured products you will be eating lots of rice and corn based and umpteen emulsifiers gums and other nasties you wouldn’t otherwise have and these have caused me gut problems ironically.
Gluten free manufactured products are not healthy foods, in fact worse than other alternatives sometimes. I avoid wherever I can or choose higher fibre pastas which is predominantly the only free from item I buy regularly, other than variety of gf flours. There’s many naturally gluten free foods and I try to stick to those best I can but do make sure you getting all nutrients you’d otherwise be omitting as further down the line other problems can arise.
I do get many get some relief from going gluten free, as it’s known to be inflammatory as newer grains are modified for yield (another entire post need on that history) but I would never suggest anyone to go gf without knowing the pros and cons and testing first, of course it’s your choice.
I feel the point of having to omit so much in a diet should only be a temporary thing and then things reintroduced back and under guidance of dietitian or a very good nutritionist - saying that anyone can do an online course call themselves a nutritionist so pick wisely. My experience of dietitians are they are very by the book and guidelines for NHS and not all look deeper into areas which can help is only snag.
Histamine diets are very restrictive. I don’t know if you’ve done any of these tests regarding genetics. Life code GX had them as part of many nutrigenomics tests they do, these can tell you if likely susceptible but doesn’t tell you you have certain conditions …I know hormones can influence histamine, especially in women around perimenopause & menopause, so this area should also be looked at too. There’s so many hormone disrupters, it’s impossible to eradicate all… areas we can help are by eliminating toxic products from washing products, be that clothes and dishwasher to all personal products we use and scented items eg diffusers & candles etc . Then there’s harder to eliminate like mould and seasonal triggers… obviously food for some.
My daughters a recovering long covid patient, has had many breathing physiotherapy sessions over the years, she still gets fatigued when exercises 3yrs on now, but generally is better now and it doesn’t stop her work now thankfully, but screwed up her hormones she is probably oestrogen dominant like myself and this exacerbates histamine responses.
Thank you for your help! I understand what you mean....I don't have chronic reactions but the advice for LC people is start gf and df. Not cutting dairy as osteopoenic (I'm 68). Appreciate your advice, interesting to hear gf disadvantages. So confusing as no definitive diagnosis of anything . Including COVID but I'm textbook LC. So pleased to hear about your daughter's recovery, just wondering if she found any meds/supplements useful. Really empathise with younger folks as so life debilitating.
Also never went GF while hypothyroid and no adverse gastric stuff.
If you read my profile I had no gastric stuff either… but you can read that as my replies are long enough 🫣🤭
My daughter at moment is taking Methylfolate (prescribed) as her folate was down early this year, but first time it’s dipped and has helped her energy levels, but it was under range. I wouldn’t advise taking without testing it is a funny area when we are older taking high doses of this (look this bit up as this information may of changed) it wasn’t a proven thing at the time, I was told by a GP (not mine although she’d heard about it as did dietitian) but theres a suggestion-correlation triggering cancers that maybe dormant, in older adults with taking folic acid (assuming same with Methylfolate) … her bloods are all in range otherwise and it’s been her breathing and tiredness really- but has now more painful periods, which she didn’t get before (like myself there and my gynaecological issues dismissed)
MCAS (Mast Cell Activation Syndrome) was mentioned by GP and area to look at but not gone anywhere with that yet her weight and skin are her main concerns as visible 🙄 and cause her more issues and she thinks milk is a culprit but we will see … her job is extremely stressful and can’t rule out her cortisol being a factor… so last thing she needs is her diet being messed with to add another layer of stress to her system… she isn’t dairy or gf .. I know she takes Vitamin D3&K2 and walks and does Pilates and gym but not too aerobic type of exercises as this can exacerbate her fatigue… she didn’t have this problem at all prior to covid which she’s had twice knowingly.
I seem to be doing better on a gluten-free diet. I don't see/feel that much differently physically, but I seem to struggle more with mood/depression when I eat gluten (discovered after eating freely after months of being gluten-free.) Maybe the biggest thing, though, is that I was diagnosed with very, very advanced osteoporosis two years ago (at age 61,) which has turned my life upside down. (Like so many things, if you catch it early, it's no big deal, but if you are already having symptoms (in my case, vertebral fractures,) when you're diagnosed, it's much harder to treat and likely has already altered your life. ) In the process of trying to understand how this happened, "gut issues" came up, and it did appear I was not absorbing nutrients well. Bones need those nutrients. My bones have improved (without drugs) since going gluten-free (and doing a lot of other things as well, so it's hard to say what might be helping.) I do also seem to have better energy. So, yeah, I think gluten-free is worth it. (I had been gluten-free for several months when I was tested for celiac disease, but most likely it's more an intolerance? Also, I do live in the USA and I hear our wheat and such is harder on the gut than in say, Europe.)
Have you looked at Dr Sarah Myhill's website? Excellent doctor who helped our daughter big time+has written much on thyroid issues, IBS +that she calls a dustbin diagnosis), dysbiosis etc. You may find a lot of help from her.
Thanks... I'll check this out.
You are very welcome.
Major benefit going GF. I had lifelong silent celiac which wasted my gut and launched Hashimoto's autoimmunity. Did not get diagnosed until I was 53 (and not by an allopathic doc; they are clueless). No nutrients (esp. protein, wasted gut can't digest) and no thyroid function was disastrous. I recovered, but some of the damage that was done did not resolve.
It is very difficult if you don't have definitive diagnosis and a doctor telling you not to eat gluten or dairy. I have Hashimoto's and I've been strictly GF twice, about a year each time. My digestion feels much better when I've been gf for a while, reduced bloating. It hasn't helped my Hashimoto's in terms of antibodies etc and that has always been my excuse to fall off the wagon even though my gut is much better! I asked my GP for a coeliac test and he refused because he said "you would have been diagnosed by now if you were" - I'm not convinced by that. I think for me being gf really helps my gut, healing any damage. Then when I go back to gluten I'm ok for a while but I think my gut health slowly deteriorates. One thing I'm sure about is that I can't tolerate flour improvers which are in most commercial bread. If you can find a really good sourdough baker who uses good flour without improvers ie additives then you might find you can eat that bread. I used to have spelt sourdough which was made with a long fermentation so it wasn't gluten free but was lower in gluten. I've also found with dairy that if I avoid cow's milk and cheese then I'm better, I seem to be ok with goat and sheep's cheese. When I'm gf I avoid supermarket GF bread type products because they are mostly full of additives and gums which are bad for your gut.If you like baking then there's a very good book by Naomi Devlin - The River Cottage Gluten Free handbook - you can probably get it from your library. It's a bit of a faff so is only helpful if you like cooking. I'm busy psyching myself up to go gluten free again - I know it makes sense but it isn't easy to stick to unless you get a very clear, instant reaction. Also - there is no such thing as a good gluten free croissant so if you love them have one before you have to say goodbye. Good luck with whatever you decide.
Thank you. No immediate reaction just following advice for long COVID treatment. Also on low histamine diet so fermented products are out. Had gastric acid issues at start but settled somewhat after anti inflammatory diet. I was ok till COVID infection.
I went GF 5yrs ago. I also have ME/CFS, can’t say it’s made me feel even 70% well but at least the pain in spleen area or coma like sleep doesn’t happen after eating anymore.
As I learnt that certain foods were triggering this, I started keeping a food diary for a month or so and learnt there are many foods that trigger a bad response in my health. I think many of them link to lectins or how certain foods are cooked. I can’t have oranges - causes UTI, jacket potatoes, gluten, fried eggs, bananas etc. I don’t have much dairy on a weekly basis so don’t know if I would feel better if I ditched this as well.
My daughter who has long covid, felt 80% better after going on a non oestrogen pill and cutting off dairy & sugar (we both use honey & Stevia to sweeten things). Sugar causes IBS and dairy gives her acne, her new pill helps with her energy levels - she can now work full time at least. But she still gets a massive drop in energy at certain times in the month.
What low histamine anti inflammatory diet are you following … book or online can you provide the names/links? Going gluten light has helped my joints and stomach and Im slowly working on removing it completely its been a hard process for me.
Just following sighi list and Google antiinflammatory foods. Lots of info. Google SIGHI and print out list....I do slip off now and then as I like a treat. Got tree pollen to think about now so will behave! I like the idea of 'light gluten ' diet .
My first attempt at GF after realising I had thyroid issues and antibodies indicating Hashi didnt seem to make much difference. Yes I was less bloated and with better digestion and lost some weight but not so much on traditional hypo symptoms. I stuck it out for 6 months. A few years later with a much longer list of symtpoms I tried again and it was night and day difference, it stopped many of my symptoms overnight and I have never looked back. I had another condition which was also affecting my thyroid balance and sorted that too and am in a different world healthwise right now but am sure GF was a key part too.
Interesting thank you.
I had most of my thyroid removed 27 years ago and take thyroxin 100 mg. I started with IBS symptoms 20 years ago. Blood test said coeliac but biopsy said not. Continued to struggle with IBS until 3 years ago when I had low b12 and they tested again, this time the biopsy said coeliac so immediately started total GF diet. My IBS symptoms improved massively within 3 weeks. Think I should have changed my diet earlier. Still struggling to get my coeliac readings under 20 it has gone from 60 to 40 in 3 years. I continue a total GF diet but I may get caught out by cross contamination as I do eat out regularly but always try to ensure the kitchen is aware.
I was advised to go gluten free a number of years ago because I was hypothyroid. I did lots of research and became quite evangelical and strict, as it worked for me. My thyroid was very stable during that time. In recent years, in a new relationship, I became a bit lax and now I eat normally and it hasn’t affected me - my thyroid remains stable. I suspect I healed something…or it was all in my mind 😉🤣
Thank you. All that sacrificing of yummy bread and pasta! Very interesting... I had gluten for years being hypothyroid and no probs but my gut took a hit with covid. I veer back and forth but noticed no difference going GF.
I had dabbled in GF a couple of times, felt better but eventually went back to bread, though less of it. Last year I had so much gas that I finally went back on GF and am trying much harder because I just feel better (and who wants to be embarrassing themselves somewhere!?) It's not easy but I'm experimenting a lot, trying different recipes (lots of good sites out there!) (If something fails you can usually turn it into GF breadcrumbs, so nothing is wasted). Gram flour makes a good thickener for cheese sauce (and almost disguises that GF pasta). The Italians make the best GF pasta. I think I should probably go dairy free too, because, as someone mentioned, it's probably the cause of acne (and at my age with dry hypo skin and the saggies starting, it doesn't look too great). I just can't deal with that yet though with trying to find some decent bread recipes, so must try cutting back and maybe eating goat cheese. Apparently the cheap rennet used in most cheeses can also be a problem. My mother has complained about bloating and gas for a couple of years now. I told her to try GF but she keeps saying she was tested and isn't celiac. I've been tested twice and of course I'm not celiac, just sensitive. To me the test is a bit of a joke. I know what gluten does to my gut! (It causes leaky gut too). Izabella Wentz has a chapter on elimination diets etc in her Hashimotos book and does a good job of explaining the issues. Anyways, give it a try, one thing at a time. It may be that when your gut heals you can reintroduce some foods slowly and in small quantities without problems. We are all different and have different triggers. I hope you find your roort cause(s)!
Thank you for your help!!
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