I kept reading about gluten free diets helping people on levothyroxine but never stuck to it properly for more than a few days, until now. I have been, to my knowledge, entirely gluten free for 2 full weeks and I just wanted to come here and say that I feel much better ! I have been going to the toilet three times a day some days !! which is so unusual for me, I normally have the opposite issue ! I can only describe it as it feels like a clear out. I’m less hungry. I feel much brighter and happier. I had negative a celiac test about 2 years ago, i should probably have another one now. has anyone else had a similar experience going gluten free ? I cant believe I didn’t try this sooner.
gluten free: I kept reading about gluten free... - Thyroid UK
gluten free
congratulations - not an easy thing to do. Please may I ask, have you just excluded gluten? Or is it a two-week elimination diet? Did you follow a particular diet?
It was only gluten. I found it quite easy if I’m honest, although eating out will be more difficult possibly
I ate lots of brown rice and potatoes , I did eat some gf bread but I tried to avoid it and will continue to because it’s full of crap.
In my opinion…….Best GF bread (especially toasted) …..Waitrose brown seeded
Keep in freezer ….just take a slice out as needed
You will need a separate designated GF toaster
Don’t share butter or jam etc
Separate cutting board
Ocado and M&S both good on GF options
Thanks I’ll go and try some
Great freezer idea. Thank you
It’s sooo expensive , this would make it last longer
Everyone has a different opinion on gf bread and pasta mine is Promise and Napolina’s. I am coeliac. So the best GF option is cook from scratch, watch sauces like soy, Worcestershire, most Chinese or japanese sauces, packet mixes, all the normal one's contain gluten. You are looking for gf versions or to make your own. You become a batch cook when you are coeliac. Plus’s don’t assume that mass produced coeliac food is healthy, it very often includes additional fats to replace the gluten.
Plus GF substitutes are often higher in carbs, which doesn't help if you need to lower blood sugar. Totally agree with the batch cooking from scratch. I have found it saves so much time too.
Promise bread is good for sandwiches and we use Warburton's sour dough loaf for toast. I don't eat a lot of bread so sometimes it gets wasted but what can you do? The sliced loaf is nowhere near as good
I quite often buy wholeloafs and now I split them in 3. 1 to eat now, 1 to turn into bruschetta that I can top with anything, and one to use to toast, or breadcrumbs for stuffings or topping everything from a gf macaroni cheese to asparagus with Parma ham or make croutons with. I just hate food waste.
Thank you. I am noticing that it is in absolutely everything !! And I’m having to be more prepared. I’ve gone hungry a few times because I haven’t been able to find anything quick to eat after work or for breakfast and ended I up with just an apple or something
Remember you need to have been eating gluten for 6 weeks before coeliac testing I’m afraid
no point doing coeliac test again
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Post discussing gluten
I was negative for coeliac but feel 100% better being GF, so (like many others with Hashimotos) am certainly gluten intolerant.
What symptoms went away for you? Do you have worse symptoms when you’ve been ‘glutened’ now?
I haven’t eaten gluten for a few years and am careful to avoid it by checking all labels and menus.
Being GF fully eliminated my gastritis symptoms and bloating/discomfort associated with this.
I did a home test which was negative but I went totally gluten free - probably in 2014/5. I feel so much better being gluten free. My IBS has improved big time too.
If you haven’t already looked on the coeliac U.K. website coeliac.org.uk/information-... it’s well worth doing so.
If you pay for a year you get website access and a terrific handbook with ingredients of all sorts of food stocked by all the supermarkets, it covers restaurants etc, you name it, it’s in there, it’s really worth joining at least to start you off.
Well done though for sticking at it.
I also tested negative for coeliac. Went GF about 2.5 years ago, then realised I was also dairy intolerant. Had bad IBD and stomach pain for years before that, it was intolerable! Much better now, wouldn't go back!! The double whammy of avoiding gluten and dairy makes life difficult, but doing GF only is pretty easy. Rice noodles are great for a stir fry, and there is some decent GF pasta out there. Like you, I find most GF shop bread pretty disgusting, full of crap and expensive. Making GF bread is not too hard, I can give you some pointers to online recipes/suppliers if you message me.
Yes please ! thanks a lot. I love rice noodles and gf pasta. Thank god chocolate is gf!!
You can get gluten free soy sauce and oyster sauce now too. Although it’s not as good it’s acceptable. Some people say that sourdough bread is low gluten but it doesn’t gel with me. I am really struggling to give up butter. Have tried all the substitutes .
I don’t think I could ever give up dairy
Hi Guys
A really interesting post. My hubby is hypothyroid and I have autoimmune PA and I was suffering really badly with low stomach acid and IBS symptoms to the point where I could barely eat.
I removed A1-casein dairy or all UK and most American cheese and butter but found A2-casein dairy ok ie cheese and butter from Jersey cows ie French and Swiss as the protein is more similar to goats, sheep and buffaloes.
It may be that like me you could still enjoy dairy but switch the protein type from A1 to A2-casein.
🤗🤗🤗
So, are you lactose intolerant but can eat the products you mention? I was ill 16 years, getting worse and worse, and found it was lactose. Endo told me in my head, as did psychiatrist.
Hi Mountainice
I have not tested positive for anything but I was becoming desperate as my symptoms were worsening and almost 18 months after an urgent referral to a gastroenterologist I am still waiting. So I took matters into my own hands and I removed all gluten, lectins, A1-casein dairy from my diet. I also switched to only eating wild fish, prawns and grass fed meats. I took that decision last September which meant that I donated about 11 carrier bags of food to my local school who run a food bank to support students. It was a drastic step but I was desperate! The benefit was immediate - within a week my IBS pain stopped, within a couple of weeks, I was looking and feeling better. After 8 months, I am now able to eat well, enjoy most foods without IBS symptoms as I have gradually introduced some foods back. The one food that still causes me some agro is wheat, cornstarch etc. I can tolerate a little of both in fermented foods but not in bread, cakes etc. I am still trying to master home made gluten and lectin free bread! My family follow the same eating plan and love it as we still eat the same meals, just prepared differently - I make my own lasagne sheets for instance, and use Gouda cheese instead of cheddar, buy Jersey milk etc.
🤗🤗🤗
You have really done well to do all that. It is a lot of work I think to look into things and then carry them out, but I expect you are into how to do things now at home. I like cooking and I didn't find gluten free too bad to do actually, difficult when visiting people or eating out, though even that is getting better as so many pubs etc do gluten free/vegan etc. I found out after visiting a friend she had put flour in the gravy, even though she knew I was doing gluten free. She probably thought a bit of flour won't matter! What pubs etc don't cater for is things without milk in them! There are hardly ever any choices of desserts for instance, and a lot of main courses have milk.
I was losing control of my bowels, happened twice when I was outside. It was so awful I was crying. It was only my daughter-in-law gave me an idea as she had been trying gluten and dairy free for one of the children. I thought I will try lactose free as I like milk, and it turned out to be the answer! I get upset stomachs more easily still, say stomach pain 3 times a week, but I am 75 so certain things upset me more. Very annoying when my 93-year-old sister-in-law can eat anything when we go out!
What can you say to that! You can only hope that one day some doctor tells them something is all in their head when it isn’t.
Watching with interest as I've noticed I get tired and depleted when I've eaten a lot of gluten. There's loads of excellent GF cake reipes around now, and cookies and puddings. We used to cater onsite for our singing retreats and husband likes baking! Worth checking put if you have a sweet tooth. Coconut Aminos is gluten free if you're cooking Aisian inspired recipes.
Hi Tuesday28 - fabulous you have found you’re so much better without gluten! 🤗
I went GF a very long time ago now and was a bit on and off for a while. But once I was really strict with it I felt so much better too. So I totally understand where you’re coming from.
Coincidentally, I was accidentally ‘glutened’ on Friday evening I think when I went to a restaurant. So you are right about needing to be very careful when you eat out.
They did know it had to be GF pasta but I don’t think it was. I was so ill yesterday - I couldn’t get warm in bed overnight, my muscles and joints all ached, my stomach felt like it was being ripped open, it was swollen, my body was puffy etc. I didn’t know what to do with myself to be honest. Thankfully I feel a lot better today! Phew!
But I would say don’t feel embarrassed about asking for what you need in a restaurant. EVER. I have in the past. Felt like I was making a fuss etc. But the reality is they might get a bit chippy for a few minutes, but you have to suffer the results for hours or days. It’s a numbers game to me, and I would now never feel bad about saying what I need. I have a lot of food allergies as well so it can get complicated. But where your health is concerned, don’t compromise.
The GF bread in the UK is pretty bad. There is some I have found in Mallorca which you can’t tell from regular bread it is so good. And a restaurant I go to makes their own GF bread and it is absolutely amazing! So, there are ways to do it.
Sorry for the ramble, but here’s to you having better health from here onwards! 🙏🏻
My favourite cure for being glutened is peppermint tea, it clears the brain fog, the joint pain and the stomach issues.
Ah Filicatlasy thanks for saying that. As it happens, I had a mint tea last night as my body was craving it! Must know better than I do what it needs. 🙈 Will remember next time and do that sooner. Thanks for the tip. 🙏🏻
You have to start the peppermint tea as soon as you feel you may have been glutened or if you are like me, just have it every night before you go to bed. If you feel rotten in the morning make a pot and keep drinking.
I have been diagnosed coeliac for over 20 years plus Hashimotos, hyperparathyroid , rheumatoid arthritis, sarcoidosis and pernicious anaemia, All autoimmune diseases.
It’s important for those of us to realise that Hashimotos is an autoimmune disease and therefore you are likely to have various forms of other autoimmune. or just this autoimmune attacking your cells. Unfortunately, 3 of mine cause brain fog, joint pain, stroke, gallbladder, heart and kidney problems, osteoporosis and stomach issues.
So I am very reluctant to agree with doctors re diagnosis of IBS or anything else if that could be a combination of any the known outcomes of my autoimmune diseases. This is an ongoing battle
Does being gluten sensitive cause hair loss do you know ? I have been suffering with this for about a year and can’t seem to find the cause.
thank you, sometimes I feel like I sound fussy or picky when I tell my husband “I can’t eat that”. But if it’s keeping my tummy happy I know I have to just stick to it. Long May it last !
Thanks for this information ! so interesting to hear people’s stories and recommendations. Someone has even kindly sent me some gf recipe websites , it’s amazing !
I think usually hair loss is due to hypothyroidism as I understand it? Are you definitely taking enough T4/T3 or converting T4 well enough?
Others here may be able to suggest more, but I’ve not come across gluten being a problem for that. But who knows? We’re all different at the end of the day, so it could be.
Ok , thank you.
It seems worse since having a very low tsh. It has been as low as 0.1 in recent months. My hair is the worst it’s ever been, far worse than when I was hypo. But who knows, everything is so over lapped it’s confusing. I ordered a blood test to check my vitamins and it checks my thyroid too so I’ll have those results by Wednesday, maybe something will show up.
If you are only taking T4 and not converting it well, then you may have a higher T4 in your blood which will reduce your TSH in the feedback loop. But it’s only when it is converted to T3 that it gets into your cells to do any good. So it looks like you are getting enough, but if your cells can’t process it to use, then it doesn’t help.
Are you only taking T4 or T3 as well? And do you still have other hypo symptoms? If so, then maybe it is the conversion is the issue. There are others on here who are much more knowledgeable than me. @greygoose and @slowdragon are amazing and have an incredible knowledge of thyroid meds and issues etc. I would check T3 too if you can. I hope the blood results are helpful.
I had no choice but to go 100% strictly gluten free as my investigations on symptoms showed I have coeliac disease as well as Hashimoto's. It did make a massive difference to my thyroid issues/symptoms. As someone else has mentioned it's important to think about cross contamination and also make sure you read the labels for stuff. Barley malt extracts seems to be in everything 🙄.
I've recently also stopped eating dairy after much more investigation about reducing Hashimoto's flares. Genuinely prayed it would make no difference (because I bloody love cheese) but it really has had an effect on my inflammation (which is good, but also sad because only stinky vegan cheese for me which tastes like the devil's armpit 🤢).
Definitely worth keeping it up if you see a benefit. Just be prepared to be blindsided by accident glutination when it happens.
Mx
Hi AtemiM - I’m milk-free too, but I seem to be able to tolerate cheese, butter and cream. The reason I think is that there is less of the A1 - casein - protein in each because of the relatively higher fat content. While drinking milk makes me ill for days.
I was reading that the A1 protein and gliadin in gluten can get confused by the immune system for those with Hashimoto’s - link genesisperformancechiro.com....
This creates the immune response and inflammation. I’ve found that removing or reducing casein has been the key for me, something a nutritionist told me a while ago. Ricotta cheese, for example, is whey-based not casein. So maybe that at least would be an option?
Perhaps not, but just a thought. I don’t seem to struggle with lactose, but if you do then this may be a non-starter.
Thanks Ironchica. I seem to be able to tolerate things with milk cooked in them (pasta sauces for example) but drinking milk or hard cheese kicks me off. I haven't tried any soft cheese yet but might trial that. I'm fine with ghee but mild response from butter. It's a learning curve for sure!
Also, if you're looking for great gluten free recipes look for the Becky Excell cook books. The Yorkshire pudding recipe is excellent. I've been made it with almond milk recently and they're still good (if a bit pale looking).
I'm so pleased, carry on. Sadly for me, I tried gluten free 2.25 years and it made no difference to how I felt so I included it again in my diet. I wouldn't be adverse to trying again though.
Perhaps dairy free or maybe you have a completely trigger? Might be worth trying an elimination diet. Hope you find something that works. 😊
I don't want to try dairy free as I love milk! I am ok with the lactose free stuff plus there is lactose free cream, and the vegan ice creams are ok too.
Unless tests say no gluten, unless you trial it and find you are better without it don't cut gluten from your diet. It's not funny for those who are coeliac to get to supermarkets and find nothing gluten free on the shelves. Please ask your doctors for tests and see what they discover, don't just guess.
now that I agree with, I am really fed up when I go to M&S to get my monthly treat of a gf pork pie and there are none left. I hate sweet gf thinks, cakes and biscuits so this savoury is my only treat. 😛
I was heartbroken when I had to give up eating bread …. but I have found some really excellent gf sourdough in recent years that i genuinely love. It’s from The Good Grain bakery. You can buy from them direct online or from Ocado or Abel & Cole. Nothing but flour, water and sourdough starter. So much gf bread is full of weird stuff don’t you find? I’m also dairy free and was overjoyed recently to find a lovely substitute for crème fraiche which is something else I really missed. Again too, no weird ingredients. It’s by a brand called Sojade, it is SO close to the real thing!
Nope not in my experience … firstly as you’ve gone gluten free you will need to reintroduce gluten in your diet, if want to take another coeliac test to get accurate result…see link below from coeliac U.K. regarding proper testing… and there’s more information on the website for types of tests as some don’t make certain antibodies, it’s explained better there and GPs should follow this, but sometimes they forget to tell patients to eat gluten then get false, negative tests results along with not running a thorough tests because some can show negative depending on tests they ran.
coeliac.org.uk/information-...
So for me, I’m the opposite I’m coeliac with off the scale antibodies when tested 12yrs ago at diagnosis and my scope revealed stunted villi and have absorption issues of nutrients and have to periodically supplement although that has got better a decade on in this area and now just have B12 injections vitamin D3 & K2 spray and magnesium.
The diet has had no impact other than I have to be gluten free as I have coeliac disease and it causes a nuisance eating out (there’s gf and coeliac gf I can tell you) and was asymptomatic of gut issues it was found because investigating other things as suffered thoracic back problem, causing neurological issues but it’s thought it was linked to coeliac disease and being low in nutrients… I was extremely low on Iron, Ferritin Folate B12 and Vitamin D, but I have endometriosis and adenomyosis and heavy and late perimenopause and when things settled there, my Iron and Ferritin got better… it took best part of 3yrs of being extremely strict regarding my gf diet to become negative regarding coeliac antibodies. I had to give up oats for 12months also… in case they were also a problem but luckily when reintroduced they were ok.
I still have constipation (hence taking magnesium) and struggle to maintain B12 or D if don’t supplement but I do have Hashimoto’s and pernicious anemia too which can be a problem with these areas.
Absolutely agree regarding gf breads full of rubbish and emulsifiers known to cause gut issues… ironically I get gut issues eating this stuff… never did with gluten 🤷🏻♀️ eating gluten free at home is very easy there’s plenty of naturally gluten free foods and I just have odd thing if out and about … I do scrutinise eating establishments that claim to have gf foods but find cross contamination a real problem right before your eyes …staff who are oblivious of their lack of care causes these problems which can eliminate most problems … serving with same utensils storing too close to other gluten items… I have walked out many establishments over years wish more legislation was there these establishments should label low gluten not gf this should be under 20ppm but totally get they cant eliminate everything, but some blatantly don’t care.
yes it really helped me too
In fact I finally got some weight off and felt better like yourself. I hope it stops progressing to celiac
gluten is strong, hard to digest. I slice a loaf up too and freeze, Lidl do a really reasonable bloomer type about £1.60 And I cope good with Soufough it's kinder. I progressed to that after a good while. I have odd cheat like a sausage lol but on the whole it's not hard to shop and eat without gluten.
Interesting to read your experience. I was diagnosed as coeliac over 20 years ago, having been undiagnosed for 20+ years and quite poorly often.
My experience is totally opposite to yours. I'm a normal once-a-day like clockwork girl, but when I've been exposed to gluten I'll go 5 times before breakfast!
For coeliac disease cross contamination is more troublesome than just avoiding gluten. Any contact will trigger the full response as it's an auto immunie disease, not a food intolerance. This means that food that comes into contact with a utensil that's also been in contact with gluten, or a work surface, or container, or even hands that have also handled gluten, will trigger a full response. For foods to be certified 'gluten free' by Coeliac UK, they measure it in less that 6 or 7 parts per million, I think, from memory. Any exposure causes the body's immune system to attack the lining of the intestines which takes up to 3 months for the body to repair. Personally I wouldn't wish this disease on anyone!
I'm glad to hear that you're feeling better, but just in general a gluten free diet is not necessarily healthier than eating good quality whole grain gluten containing foods. If it's helping you to go gluten free that's great but be aware that most mass produced gluten free foods leave a great deal to be desired because they're using high processed food to try and simulate what food made with gluten is like.
Good luck with your new regime - I hope it continues to help you feel and be healthier. 🙂
Thank you so much for your reply. I definitely won’t be going near the gluten free junk food and I’ll be doing my best to eat gluten free grains. I’m not happy about being gluten free, I’d rather be able to eat the same food as my family. I hope this feelings lasts
I think the improved wellness is on the thyroid side as gf seems to take 'pressure' of the system generally
Could it be because of our gut barrier not working properly perhaps ? Something has worked for me because my brain fog is better too. I am definitely clearer headed
Absolutely yes. Brain and gut share Gut health so important
When I get a bit of heart burn I know Iv got a bit slack. Good warning
I do t understand why it's still not up there from doctors etc. All about drugs to put a plaster over things to feel better
Yes at times ok but I'm all for root causes
There is nothing stopping you and your family eating the same meals, the only thing we buy separate in our house is gf bread. We make most meals from scratch and have just bought a 30 minute cook book to expand our menu, but we eat Italian, French, Thai, Indian, Chinese, Scottish, Greek and Turkish food with no worries about wether it is gf, meat, fish, vegetables, cheese & lactose free cheese, milk & lactose free milk, rice noodles, rice, millet, buckwheat, potatoes, eggs, nuts, seeds, salad, tomatoes, cucumber, fruit, avocados and tomatoes are all gf with no chance of cross contamination and make great family meals.
Also for those of us who are coeliac the symptoms of being glutened are not always gut related, I have been so badly glutened that it caused neurological issues like memory loss and brain fog very much like Hashimotos but then of course you are dealing with 2 autoimmune diseases which cause the cells in your body to attack themselves. Now if only someone would research why so many of us end up with multiple autoimmune diseases perhaps we would have a real cure to all of it.
I've heard of a genetic test for gluten sensitivity; whether or not you are currently eating gluten will not affect the result. It's called HLA DQ8 and HLA DQ2. Those genes are linked with susceptibility to autoimmune diseases, including Hashimoto's and Type 1 diabetes. Gluten causes intestinal permeability and increases chances of developing autoimmune diseases. Also the GMO gluten which has glyphosate causes disruption of the gut microbiome, leading to more health problems.
Yes. My awful symptoms have virtually disappeared on gluten free diet. Fatigue,, brain fog, headaches, pain and so on gone. I have Hashimotos. In the early days if I glutened myself accidentally I had a stonking headache. Worth the sacrifice.
I had to go gluten free recently (I've Hashi's) due to some kind of sudden onset of either gluten intolerance or wheat protein intolerance, to the point of diarrhoea, blood and general digestive pain and weight loss. Once I removed it, all symptoms stopped. I am not coeliac, don't have the genes mentioned. It all came on very suddenly out of the blue, now I feel much better but am having issues putting weight back on as foods seem very limited along with my current food intolerances. But never going back to it again!
You can be gluten intolerant, but get a neg coeliac text. I am gluten and dairy free, fall off the wagon once in a while and pay for it . But made a big difference.
You can be gluten intolerant, but get a neg coeliac text. I am gluten and dairy free, fall off the wagon once in a while and pay for it . But made a big difference.
Good for you! It's worth it to feel better. There are some good GF breads out there, though they aren't cheap. (mixes too, that you can bake at home.) There are a lot of good recipes online, but do weigh, rather than measure ingredients, as it can make the difference between success and failure. Then you know what's in your bread. Most GF recipes tend to dry out quickly so make smaller quantities or with bread, etc., slice and freeze them. There are a lot of products that have gluten hidden in them (like licorice - main ingredient is flour!) so read labels carefully. I found I generally ate less bread on a GF diet too. All the best in sticking with it!
Thank you! I seem to be able to still have my favourite treat foods like cheese and crackers, toast, gravy dinners, crisps, sweets ! A glass of wine ! I’ll miss normal pizza and I do find it hard to find quick options too being on the run all the time. Tonight I had a big fat jacket potatoe with Turkey chilli! Delicious
There are yummy alternatives out there!
I went GF a year ago after reading similar posts. I wasn't prepared for the change! 20 years of insomnia cured in 2 days of going GF. Not lost sleep since. I've had celiac tests in the past so definitely not that. I am reading a lot about microbiome just now and recommend Hashimoto and other thyroid disease sufferers listen to Steven Bartletts pod cast on 'If your Poo looks like this'. I'm wondering if the microbiome is not just the reason for the intolerances but for the auto immune problems in the first place. It has so many tips but im wondering if microbiome can be improved, so would our intolerances. Happily it involves eating more
The most obvious way gluten interferes with thyroid function, is to waste the gut, from which follows thyroid autoimmunity. Has your doctor checked your TPO and Thyroglobulin antibodies?
hi hun, glad to hear you feel better!!! Did you have brain fog before you cut it out? I’m hypothyroid / hashimotos and have read the benefits of going gluten free so want to try it x