Hi, I discovered this study tonight which shows a direct correlation between coeliac disease and damage to the thyroid. I also discovered today that a whopping 20% of coeliac sufferers have thyroid problems. Interestingly, the reverse is not true, with only 3% of thyroid sufferers being diagnosed coeliacs. Has anyone read any other studies or know of any other respected sources of information on the possible connection of coeliac to thyroid problems? Any leads most gratefully received...
Does coeliac cause thyroid disease? - Gluten Free Guerr...
Does coeliac cause thyroid disease?
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Chancery
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Perhaps the connection is to do with intestinal permeability caused by gluten?
chriskresser.com/the-thyroi...
There are a few papers on PubMed, not sure if they've got what you want.
ncbi.nlm.nih.gov/pmc/articl...
Hi Penel, thanks for those links, both very interesting. I especially appreciated the second one, which is a positive bounty of data, albeit it from fairly small groups. The only depressing thing about it is it doesn't seem to be a sure curative, being on a gluten free diet, as some of the Coeliac sufferers appear to have developed thyroid problems AFTER going gluten free. Not good news, that! We can only hope it was because they were non-compliant and sneaked in bread rolls and pizza!
hi Chancery
Prof Hadjivassiliou has mentioned that there is a link between thyroid illness and gluten sensitivity illness - Im not sure if he has written on this subject but he may have done so it would be worth a search on google scholar for this. I have read or heard but Im afraid I cant remember where, that the structure of the thyroid is similar to the structure of gluten and this is why the gluten (gliadin) antibodies attack the thyroid - again I dont know if this is true.
The thyroid charity TPA (thyroid patient advocacy) are aware of the link between gluten and thyroid illness so why not join their forum and ask the question there - they are very helpful and will likely be able to send you some information.
From my own experience I was on levothyroxine but after being guten free for a few months had to reduce and eventually stop this and my thyroid tests have been normal since and normal at a very health 1.6!!
Gill
Hi Gill, thanks for both those recommendations; I hadn't thought of either, ta! I have heard that theory too, about the thyroid being similar to gluten, but it does sound far-fetched, I must admit. Worth looking into though. I'll add it to my to do list.
Very interesting to read of your own experience. Can I ask you, how did you know to lower your levothyroxine? Is it because you developed hyperthyroid symptoms, or was this done purely through testing somehow? I've often wondered how people who are taking steps to improve their health, and it works, go about putting it right once they have 'tampered' with their natural thyroid output by adding in a medical 'supplement'.
Me again, Gill, just to let you know I've just looked Prof Hadjivassiliou up and that looks very promising indeed. He combines neurology with coeliac and that's a great pairing for me, since mine is a neurological issue. Thanks again, I'm hopeful this might be a very useful place for some interesting studies!
hi Chancery
Yes Prof Marios Hadjivassiliou is a great reference for gluten and neuro issues. I became hyperthyroid and felt so uncomfortable that I just knew to reduce the levothyroxine.
take care,
Gill
Hi Gill. I have been reading his articles and have got myself very excited about the possibilities. This is the first time I have found something that actually seems to refer to me and that may prove helpful. The only trouble is, he is in Sheffield and I am in Scotland! I'm not even sure if NHS Scotland would permit me to see a Sheffield specialist.
Do you know offhand whether he is still practicing in the Sheffield neurology unit where he was working (I forget the long fancy name of it!)?
Hi Chancery - yes he definitely is - (he is my neurologist!) he is at the royal hallamshire hospital - the long fancy name is something like the sheffield centre for research into gluten related diseases. he would offer advice Im sure if your doc contacted him but people go to him from all over the country and in fact the world.
I think the NHS still applies to Scotland and therefore you can choose to see him under the choose and book policy - you will likely have to fund yourself to get there, but hey Sheffield is a lovely place and not that far on a train.
Are you under a neuro at the moment. Do you have neuro symptoms and do you have coeliac disease or thyroid illness? Just reread your original post and its a bit abstract.
anyway, hope you have a lead!
Gill
Hah, Gill, you won't believe this. I just posted separately asking if anyone knew if he was still at the institute and if they had ever consulted him! If I'd known you were one of the exalted, I'd have come straight to you!
My situation is a difficult one because I am presenting, as they say, with a rare and seemingly irrelevant illness. That's what my doc and the neurologists I've seen think. I have trigeminal neuralgia and I've always felt it was part of a bigger degenerative condition. I have had to do all the work researching this myself because my condition is recognised and has no known association with autoimmune issues. But I believe that's what it is. Since my research started I have uncovered an unknown, but real B12 issue, hypothyroidism and partial IgA deficiency. I have also suffered from urticaria since the 90s and potentially have Sjogren's Syndrome.
My IgA coeliac test was negative, BUT that's when I discovered I had partial IgA deficiency and, as you may know, you are supposed to have an IgG test for this, not the standard IgA. I have been fighting to have one of these but so far have been unable to get it. I was very interested to see from the Prof's study that he uses the IgG anti-gliadin test, not the standard tests, because he says that's what neurological coeliac symptoms are best picked up with. This would explain why I have had no luck with conventional testing. He also uses gene testing.
Given the fight I've had so far, I can't see me getting either of these tests via my GP, and I can't imagine getting anywhere at all, other than being laughed at, with my neurologists.
Anyway, that's the short version. My question to you is, does he see 'ordinary' patients? It's not all research or referred cases only? And is he a decent man who listens? Is he going to shut down on me as soon as he hears trigeminal neuralgia? It's an incurable, degenerative condition, so this tends to make doctors run away and hide behind drug treatments because they don't know what else to do with you.
Anything you can tell me about what he is like to deal with would be most useful. I can't tell you how much I appreciate this. Please accept a virtual box of chocolates!
Hi - you will need a referral (as we always do to secondary care) but this is a standard NHS choose and book referral. He is a lovely man, he will try to get to the bottom of what is happening with you and he listens. If anyone will figure this out he will - honestly - there are very few doctors that I have respect for since having to go through the mill of figuring things out myself, but he is one that I do and who helped me.
is there a way to do private messages here? Id be happy to discuss more - privately. Id like to know if you have other neuro symptoms besides the TGN which I dont know about. Have a look for Dr Chandry re B12 deficiency - think he is Hull.
Im enjoying the virtual chocolates - yum, Thornton's how did you know? And being virtual they dont affect my diet lo!
Gill
Hi Gill. Thanks for that. It's very reassuring to know he's a decent doctor. Both my neurologists were a wash-out. I had to make a formal complaint about the first one and the second one wasn't any better, possibly the opposite, so there's no hope there.
You can PM just by clicking on my name. It will take you to my profile page and on the top right-hand corner you will see the 'Send a message' button. Just click on that and Bob's your uncle.
I am getting tired of fighting my doctor's scepticism and sneering and it would just be such a relief to go into a doctor and ask for tests, or discuss my theories, and not have to fight for them.
I am still waiting for a (second attempt at) IgG coeliac test results (the lab keeps 'missing' them) plus a thyroid antibody test to see if it is autoimmune or not, but I don't hold out much hope for the IgG tests and if I don't have autoimmune thyroiditis I feel that will put me back at square one.
By all means message me and let me know what you'd like to know....
Hi someone said they managed to reduce their thyroxine,weird iv been gluten free since January just had bloods done and my levels have dropped,so iv had to increase you would have thought since going on the diet my absortion should be better so could decrease my thyroxine not increase.
I don't know the ins and outs of Thyroxine, Sammie - I've never been treated, I'm a Thyroxine virgin! But I imagine being an endocrine problem it's probably not a simple in and out equation. I know it doesn't repair itself on a straightforward line. I know, also, that adults can take up to 18 months to repair coeliac damage after giving up wheat, so I should imagine you might be looking at the same time scales.
Hi Chancery, I paid for a gluten antibody test when a nutritional therapist strongly advised me to because I have autoimmune thyroid disease. The test was positive for antibodies (likely coeliac's disease because I also had other coeliac symptoms). There is a link. There is info online but usually behind a paywall. I did find this: todaysdietitian.com/newarch...
Chancery• in reply to
Hi Collie, many thanks for the link - most interesting. By a weird coincidence, I went gluten free recently, merely as a side effect of a low carb diet and the changes I'm experiencing are quite profound and predominantly gut related. I've been claiming wheat problems for so long, and my doc has been so disbelieving of it as an idea (I am negative for coeliac), that I had ceased to believe in it myself. However, this recent experience has made me realise I was stupid to ignore my own instincts - and that my doctor is an idiot! I think that's the biggest curse of Western medicine - this total inability to use their imagination when they are dealing with something that is not yet fully proven.
Of course, this could simply be improved health from a cleaner diet, but I don't believe that. I suspect I've been right all along and I actually have had (do have) NCGS. Ironically, I may have developed coeliac if I'd stayed on my old diet - if I hadn't died first! Let's just hope it's not too late to help resolve my health problems...
• in reply toChancery
Good luck with that, Chancery! I also experienced very noticeable changes when I went gluten free earlier this year (realised I'd previously had a kind of IBS which only comes back if I accidentally eat the tiniest amount of gluten). After 5 weeks of gluten free (made some mistakes during first two weeks) I noticed a wonderful improvement in depth perception - colours seemed more vibrant and on my country walks everything looked so much more, well, 3d. I paid for the test because, being vegan already, I didn't want to cut out anything till I was really sure I had a problem (it doesn't always show up on the usual coeliac test, though I'd recommend asking for that if anyone is thinking of going gluten free just in case it saves a lot of money). I never asked the doctor for the coeliac test because it had been challenging enough convincing them to prescribe T3 (paid for the DIO2 test which proved I need it...because clearly my own subjective experience wasn't convincing enough).
Unfortunately I still need to take the T4 & T3 - I think I was ill for too long before diagnosis so perhaps too much damage done to poor old thyroid.
Even if gluten free, you can get a test for the NCGS & Coeliac genes but rather expensive (via PureHealthClinic site - Micki Rose) which would serve only to rule out the problem if negative, as not everyone with the gene develops the condition.
I hope you continue to improve, it sounds as if you are successfully trusting your own body to tell you what it needs. Wishing you health and happiness x
Chancery• in reply to
Hah! Lucky you with the depth perception and it all proving rather poetic and lovely for you. Do you know what my most remarkable change has been? Improvement to constipation. I know, it's so banal and prosaic it's embarrassing. But I have had chronic constipation, unrelentingly, since I had my first gallstone attack several years ago. Nothing I ate or did or took made the slightest impression. Now, technically eating no 'healthy fibre' of the wholemeal variety, I am slowly noticing a return to what looks suspiciously like healthy BMs. And I've only been on low carb for just over a week.
Of course it could all be some kind of bizarre (and inexplicable) coincidence, but I suspect not. So much for eat brown rice, pasta and whole-wheat bread to improve your bowels!
Hi I believe there is a connection I have suffered stomach problems ever since I can remember
in my fourties I have my throroid and calcium glands removed then diagnosed with coeliac I think it may be link to outer immune disorder, I have read that diabetics can be linked with coeliac .
I think I've read about the coeliac/diabetes link too, Suran. But can I ask what your calcium glands are - I've never heard of that.
The parathyroids 
They keep the balance of calcium in the blood - when too high the thyroid secretes calcitrol - the only involvement I believe between the thyroid and the parathyroids .... in spite of their proximity to each other.
Thanks, Marz - another mystery solved!
I haven't been on here in an age; still struggling uselessly with IBS, with no idea of cause. How are you keeping?
Really good thank you. I did want a new sciatic nerve for Christmas - one that wasn't trapped constantly After lots of physio and acupuncture treatment I think I am left with this as a permanent fixture 
Still if that is all I have to complain about - then I am fortunate. I can still teach yoga with a few oohs and aahs....
Sorry to hear your syndrome is still troubling. Don't forget the second highest amount of T3 receptors are in the lining of the gut - the biggest demand for T3 being the brain of course. If you are using up all your T3 to keep your brain going then there's not enough to maintain the integrity of your gut Just a thought.
Even my dog is Hypo and after a recent test her T4 was increased to 600mcg a day - she is almost back to her puppy days with her renewed bounce ! She will be 12 this year .....
healing the gut takes many months - even more than a year - so do not give up.....
Ouch, sciatica is a nasty thing - nothing beats electric shock pain shooting through your body for fun times!
Yeah, I always have my thyroid as a possible underlying culprit at the back of my mind. I had my thyroid tested again recently as part of a 'let's check everything to see if anything shows' approach to finding out what's causing this IBS. The doc wasn't in favour since it had all been tested within the last year - a logic I find unfathomable, given that the problem was newer than a year, but hey, he did it. My thyroid has improved - hoorah! - presumably due to being off Carbamazepine (I always knew that mother was doing some of the damage), but at 3.6 TSH and 12 Free T4, it struck me that it wasn't NORMAL normal, if you know what I mean.
Still, I believe that the thyroid deteriorates as you age in everyone, so maybe it's a good result for someone nearly 60. To be honest, I am just so tired of reading and researching things, going from one idea to the other but never finding anything conclusive, that I've just stopped doing it, pretty much. It was making me feel like a neurotic hypochondriac!
The only thing on my test results that came back odd was my ESR, which was marked as "insufficient". I looked it up but can't even remember what it said now. It is indicative of some diseases but it can also mean that the blood was just too old. Mine's shouldn't have been; it was tested promptly, but I knew the doc would say that was the reason so I didn't even bring it up. What's the point?
Are you still taking the T4/Levo ? Your TSH is far too high if you are and the FT4 is far too low. Even without the ranges - I am thinking the FT4 is almost at the bottom of the range. Your thyroid is not producing T4 - a storage hormone. This means the Active hormone T3 will also be low and when every cell in your body has a receptor for the T3 - then no wonder things are going wrong in the gut. The T4 has to convert into T3. Bit like spreading a teaspoon of butter on 10 slices of bread - ooops - sorry are you GF !!
As you know the gut has a big demand on T3. If you go to the Thyroid UK website and look at the Signs and Symptoms of Hypo you will see IBS mentioned.
ESR is an inflammatory marker - ? sedimentary rate. Forgotten what the e is for !!
You are right thyroids do slow down as we age - as do the ovaries and so on. However it is a simple treatment to correct things - and to prevent so many of the age-related conditions.
Hubby and I are both on T3 and the compliments flow - and that is all we take along with a tray full of supplements. Our dog now on 600mcg T4 and she too has improved since the vet tested her and increased her dose from 400. Yes dogs need so much more - or it could be that humans do not take enough.....
No, I haven't taken the Levo for a several months, if not longer. Those figures are all my own. I know I read somewhere that you should be under 2.5 for TSH, ideally, but like I say, I don't know if that applies to aged gits like myself! But my doc won't hear of anything that is under the NHS standards as being in any way less than perfect . He uses that as his guideline and knows nothing other than that so I have no idea if this is healthy or not.
Frankly if everyone over a certain age had some T3 I think it would save the NHS a fortune.... it would eliminate so many conditions. I am saddened that you are still held back by your GP - I had you down as someone that would go it alone.... oh well - be well and most importantly - happy.
I have seen copies of endless test results and have yet to see an above mid-range T3. Check out Low T3 syndrome.....
I'll do that - thanks for the tip! Going to check it out now....
ncbi.nlm.nih.gov/pmc/articl...
Dr Sarah Myhill suggests taking 2000 mg of VitC before sleep - increasing to bowel tolerance - for SIBO - which she prefers to call gut fermentation. I recently read her latest book - Sustainable Medicine. An excellent read. I take 2000. Could be worth a try
It could be the cause of your raised ESR too.....
Thanks for the link, Marz. I have SIBO on my radar for testing if dietary measures don't work out. At the moment I am on a low fructose diet to see if it might be fructose intolerance (I do love my fruit!). After that I'm either trying histamine intolerance, or may just bite the bullet and go on a full elimination diet. I've never done one of those - the idea is too depressing! - but I'm so tired of this. If all that fails, I will need to ask to see a gastroenterologist and endure having things pushed up me and down me. REALLY don't want to do that, but I may have to. Worn out with constant pain and 'just one bloody thing after another' syndrome.
I'm going to take another look at Sarah Myhill's work, thanks for that too. X
Trying the VitC is cheap and effective - and will help the body generally. Try not to eat fruit after midday - fermentation ?
I was diagnosed with Hashimotos and Celiac 11 years ago. I would imagine that gut issues with Celiac will run hand in hand with other autoimmune disorders. I began having health problems at age 13 (over 55 years ago) after the series of Oral Polio we received. The Hypothyroid issues were very apparent on looking back, but no one caught it until I was in my mid 50's, but not until I was 62 was I properly diagnosed. I have run the gamut of allergies, CFS, Fibro, etc, including Dermatitis Herpetiformis (DH) before finally being diagnosed. And, the DH I finally determine, myself. That having existed long before the Hashis and Celiac diagnoses. It's been a very long journey through many ignorant doctors.
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