I have hypothyroidism and ORDS thyroiditis (although I think they call it something else now..) and my thyroid is practically gone.
My friend just got diagnosed hypo and was told to go gluten free.. my doctor suggested it but didn’t say it was necessary.
How many here are gluten free?
It isn't necessary. But, it's a good thing to try. A lot of people with Hashi's (or Ord's, I believe) are gluten-sensitive, and many of them also have Coeliac, so if they cut out gluten, they feel better. But, I'm not sure it would help much is hypothyroidism due to other causes.
I have Hashi's - or possibly Ord's, because I've never had a goitre - I tried gluten-free but it did nothing for me, so I returned to eating gluten with no ill effects. It's just something to try. 
Autoimmune thyroid disease (Hashimoto's or Ord's) often affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels can affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
healthcentral.com/article/t...
ncbi.nlm.nih.gov/pubmed/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Fewer than 4% of autoimmune thyroiditis patients are also coeliac, so the problem is, in my mind, over-hyped. If you cut out a major food group, you may be prone to seeking some sort of "clean", perfect diet, and cutting out more, to the detriment of your overall nutrition. Access to non-local foods helps to avoid deficiencies and I feel we should enjoy embracing as varied a diet as possible, which would automatically reduce (though not necessarily eliminate) the percentage of gluten, by substituting other grains.
I’m in remission from Graves Disease, I’m not Coeliac as far as I know - I went GF about five years ago without being tested after I developed yet another autoimmune condition and now that my thyroid antibodies are almost non existent and my CRP has come down.
I wouldn’t even consider eating gluten again. It could be that it was time for my antibodies to reduce naturally but I wouldn’t take the chance of going back to gluten containing foods.
I eat a very varied diet loads of fish and chicken with the odd steak or lamb. I eat eggs, soups, loads of veg and fruit but more veg than fruit and I tend to eat berries, apples and pears rather than tropical fruits, I eat lots of nuts and seeds and try to keep off junk food and fizzy drinks.
I thicken sauces etc with cornflour and I definitely don’t feel anything is lacking in my diet because I don’t eat wheat or other gluten containing products but I do eat gluten free oats every now and again.
in my opinion it's always worth a try, give it up for a few weeks and see what happens. Even reducing it may help, you don't have to go completely gf, although some people say even a crumb picked up by accident gives you 10 days of hell. My dd is gf and so a lot of meals I cook and a lot of snacks in the house are gf and I feel better -even though I will have gluten now and then so not strictly gf, just reducing it helps me.
I am gluten and casein free. Contrary to the prevailing dietary advice I do not believe that either wheat or cow dairy are particularly beneficial to my health whatsoever along with sugary and processed foods. Commercial wheat is pretty unnatural these days. The Chorleywood process along with super resiliant wheat has created the perfect storm (for our unadapted guts) which means that the wheat we have consumed in processed bread is only partially 'digested' unlike old fashioned sourdough using old fashioned wheat. Having been on antibiotics so many times in the past I struggle to cope with dairy as well. Going without has eliminated IBS, so I am sticking with it. If you have managed to avoid processed bread all your life and antibiotics there is no reason to give it up especially if you have no symptoms.
I have no immediate or obvious especial IBS reaction eating 'modern' whole meal or granary/seeded bread, but when I recently bought an artisan sourdough loaf, on eating a slice it immediately brought on severe and unusual IBS symptoms.
Some people with histamine intolerance cannot cope with fermented foods... my daughter is like that. It may be something like that rather than gluten in your case??
People like Dr Myhill ( whom I respect for her knowledge on thyroid matters) seem to be largely unaware that a subset of people who are suffering from autoimmune issues can have problems with histamine. She advocates a PK diet, but if you look at her diet planners there is a LOT of histamine rich foods!
Oh, that's interesting, thank you. I shall read more, but a quick search tells me is is quite rare (for which, read, unlikely that the GP will know about it / be willing to test for it) and interestingly lists diuretics as being one factor that can interfere with DAO and HMNT levels - I've been taking them in a trio of drugs to (allegedly) treat high BP, for years.
Maybe try keeping a food diary and see if anything seemingly benign causes flare-ups. Left-over roast meat is a real problem e.g. in sandwiches, or put into pies etc. Worse still are a lot of tasty German foods - they are big on preserving and fermenting.
Oh she knows all right I’ve discussed it with her.
I don’t eat chicken at night rather say turkey as I have nightmare night sweats.
She has to be v careful what she writes as the gmc are all over specialists web sites.
As yet there is no research she can quote confirming antihistamine foods definitely cause issues with thyroid patients, that the GMC accept.
What is said in a private conversation is a different thing.
Thanks for the insider knowledge... I thought it was a bit weird. Some research (I believe it was in Australia?) into mast cells which in my mind implies histamine issues has been going on elsewhere for CFS/ME and it would be peculiar for someone of her standing to be outside the loop.
Hi
Yes she v strict but lovely too. No 🧁 even gluten free. However she does make flax seed bread. Can’t say I have bothered as I know what I can have and for me it’s the timing. I now have my main meal at lunch time which is so much better for me. She’s relaxed a little on some carbs but only v limited amounts. You can measure in grams what takes you out of ketosis. Me it about 3 nuts lol.
I wouldn't eat flax seed in that quantity.
ncbi.nlm.nih.gov/pmc/articl...
Sorry what quantity?
The amount needed for a loaf.
But you only have a slice or a small barmcake not a loaf. The rest you can freeze.
A teaspoonful of linseed per day is enough to keep me regular, when necessary. The quantity in a slice (or several) of bread made from it may be thyroid-suppressive. I don't aim to be ketogenic, so restricting myself to one slice per day would mean such a loaf would be no substitute for the bread I make.
Ive also noticed I often have a bad reaction to sourdough and some other fermented foods. Didn't know about the histamine intolerance so I'll research it, thankyou!
There may be some cross-contamination, but we don't consume GM wheat in the UK.
As far as I am aware modern wheat has been bred (fair enough - it is not necessarily tampered with in labs) to withstand pests and diseases and to produce bumper sized grains? If the grains are more resilient then it stands to reason that we may struggle to digest it. If this were only happening in America it must be a coincidence that our generation (in the UK) are the first to have noticeable problems with it. However, just edited my earlier response, because it detracts from rather than helps reinforce the point!
Just been reading up on the Chorleywood Process - this article from the Independent dates back to 2006 so the bad press the Chorleywood Process gets is nothing new
I have hashimoto ‘s disease ( hypothyroidism) and for years suffered with very bad IBS, swollen joints , tiredness , brain fog and lots of other weird symptoms. Gave up gluten a few years ago and it has made a massive difference to my well being. I still have some food reactions but most of the time I am fine and no more joint pains or swellings or brain fog. It’s actually pretty easy to be gluten free these days. Bread and pasta made with rice or other non wheat based flours are becoming very good. I make my own cakes and biscuits. If I eat gluten by accident I get immediate symptoms ( upset tummy and diarrhoea followed by days of feeling exhausted and achy) so I would not go back to eating gluten.
I have Hashi and had the same problems as you and I went gf mainly to cure my ibs symptoms which it did plus all the other aches and pains you mention, it also, to my great joy, cured my lifelong migraines. Due to inexperience when I had been gf for a few months I accidentally ate gluten which (apart from the usual upset tummy etc) gave me an awful bout of Dermatitis Herpetiformis which means according to my endo that I have celiac D as apparently only celiacs get this,though I do not intend to have a biopsy to proove it. Now I make my own bread, cakes & biscuits, obviously I would never go back to eating gluten ever.
Being GF has made an amazing difference to my IBS too. I did it when I developed autoimmune arthritis as well as Graves and IBS asthma etc, etc. I sometimes make cakes but only if someone is visiting, I try to avoid cake - certainly on a daily basis, just my husband and I at home now and neither of us really need to eat cake - doesn’t stop me going to the local garden centre for a a slice of their delicious gluten free brownie though😉
I make my bread, biscuits cakes with mix of ground seeds and flax, almond flour, tapioca flour and cornflower so not too unhealthy providing only have one slice occasionally LOL. We are also only a couple so just for a treat now and then, I don't bake in summer either as too hot to have oven on where we live.
My problem is alas I’m not a ‘just one slice’ sort of person. 🍰☹️
We eat fairly low carb and very low sugar/fruit (I have fructose intolerance and hubby is diabetic)and now dont get cravings for sweet stuff so its not too difficult to ration treats, it helps to freeze things in rations.
I have similar reactions as some of those who’ve replied. I’m adding that I heard something interesting from an emergency medicine specialist. He recommends that people in a coma shouldn’t be given intravenous nutrients that contain gluten. He said that it’s inflammatory and can unnecessarily prolong the body’s healing time. I had interstitial cystitis for over 30 years and the pain was halved within a few weeks from going gluten free, as recommended by a gastroenterologist. At this time I had a blood test that showed I had a 1:30 chance of having one of the genes for coeliac disease. Some gut infections can also cause villous atrophy, giving a false positive for CD. This happened to me due to the airborne mycobacterium C.pneumoniae. After taking targeted antibiotics to eradicate it, my gut was healed and I can occasionally have a tiny bit of gluten without ill effects. However I do avoid both gluten and dairy as much as possible to combat fatigue.
Hi
And sugar? That’s v inflammatory. For me no to all three not unless I want to be rushed into A and E.
Thanks for the reminder. You’re right about sugar. I forgot to mention that I’m noticing an increase of pain if I have too many days with gluten free cereal. Starchy foods, including vegetables like carrots and potatoes are fodder for klebsiella bacteria. Prof. Alan Ebringer realised this regarding his patients with Ankylosing Spondylitis. He puts them on a starch free diet and the klebsiella are starved and die off. The patients have a massive improvement in pain and mobility. More info if you key his name into YouTube, also search for “Carol Sinclair Starch Free Diet”. It all makes sense, especially when starches convert to sugar during digestion.
I resisted being wheat free for a long time. My fatigue and brain fog were debilitating but blood tests for sensitivity were always negative, so I was reluctant to make that change. I finally sustained it for several months and began to feel better. I don't feel as good as I would like, but it's very clear if I ever eat wheat that my body can't tolerate it and my symptoms remind me how bad it used to be. Give it a try and don't give up after only one month. It took my body longer to respond. It was at least four months before I started to feel better.
Thanks I gave up gluten about 2 and a half weeks ago and was wondering how long it took people to feel better.
I have switched from non dairy pescatarian to meat eater (still non dairy). I have endometritis and normally my periods are 7 days. This month I still had pain but only a 4 day period which is the first time in my life its so short! Apparently endo is an autoimmune disease so this is very interesting.
Only thing is I'm getting these white spots (Fordyce spots) on my lips, probably because my diet is now too high in oil and fat. Need to make adjustments...
Apparently Ords is when the Thyriod doesn’t enlarge or form a goitre and Hashimotos is when there is swelling and a goitre but most of us just call it Hashimotos. Fun facts I’ve learnt from this forum 🤗 I went GF a few months ago, it wasn’t hard as I rarely eat processed carbs but I became stricter. I haven’t noticed a difference because I was already aware that I have a sensitivity towards gluten anyway. So I’ve just gone back to the way I was ie not worry about gluten in gravy. I did however have some crackers and cheese the other night and everyone knew about it because I was bombing the whole house with my gluten perfume! 😂
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