Pettals posted a very interesting piece recently showing a more direct and specific correlation between coeliac disease and thyroid problems. The study it was taken from is here : wellnessresources.com/studi...
Believe it or not, this is the first substantiative piece of ACTUAL evidence I have found for all the 'you should give up gluten' advice I see bandied about on thyroid forums! I found this especially interesting as I discovered this morning that 20% of coeliac sufferers also have thyroid problems, but only 3% of thyroid sufferers were diagnosed with coeliac disease. My first thought was, why? Why that large disparity???
However, it would be very interesting to know what proportion of that 3% had autoimmune thyroiditis, given that there are MANY thyroid disorders but they don't all involve antibodies. My guess is the incidence of diagnosed coeliacs is higher than 3% among Hashimoto's sufferers. Why, oh why, has no-one done that statistic? Anyone who likes organising polls - there's the topic for your next poll! I feel sure that would be an enlightening piece of data.
But, back to this study. Given that it was done in 2008, seven years ago, why has more not been done here? Or has it? Does anyone know of any other studies studying this correlation between coeliac and autoimmune thyroiditis?
Given that I now have a diagnosis of hypothyroidism, and have long felt that it is merely part of a larger autoimmune problem (I always have felt this, long before evidence started to accrue), but am still struggling to get a proper coeliac diagnosis, this is of great interest to me. I know there is a lot of anecdotal and observational stuff out there on gluten's involvement in Hashimoto's, but I'm looking for something more substantial. To this end, I'd be deeply grateful for any leads to serious scientific work you may know of in this field, no matter how scant. Even passing references are of interest, as long as it comes from a legitimate source. Many thanks!
E.T.A. Just editing this to add another very interesting study I found at 2am this evening (yes, I am still up - insomnia, don't you know). This is from PubMed and the most interesting thing about it is it gives actual statistics for those with Hashimoto's who also have coeliac disease and yes, as I thought, it shows a much higher figure than 3%. I am too tired at this hour to take any of this in, so I will read it fully tomorrow, but it looks very intriguing. I'll update the stats if anything looks significant.
Chancery, the coeliac screen is reportedly quite inaccurate throwing up false negatives and positives. That may be one reason for the disparity you observed. Another reason is that unless the hypothyroid patient experiences gastric dysfunction s/he probably isn't tested for coeliac disease.
That's true, Clutter. In fact, they keep telling us how many undiagnosed coeliacs there are. I remember wanting to snap that back at my doc when we were having an argument over retesting for celiac disease when he said to me (accused, really), "Has anyone else in your family got coeliac disease?" and when I said no, he gave me his 'look', the one that says, 'yeah, I thought not'. I wanted to say then, 'Given that there are so many undiagnosed coeliacs, would it be so odd to be the coeliac child of an undiagnosed coeliac?' But one only thinks these things and does not say them.
On the other hand, given how many people struggle to get thyroid problems recognised, there could be an even BIGGER margin the other way! It's a very interesting statistic no matter what way you look at it. What I found most surprising though is that this is quite an old study, in scientific terms, and yet no-one seems to have done more on it. Where's the book? I would think that would be a bestseller....
Chancery, your GP's rationale defeats me. Coeliac disease starts somewhere in someone. Your close relatives not having it doesn't mean you don't. The wheat and gluten we eat today has been modified so that it is quite different to that our forefathers ate and that may be why it seems so prevalent today.
Absolutely. My father's disease pattern was almost a prototype for mine. The only difference being that his gastric problems ended up in a heart condition and, ultimately, stomach or bowel cancer - not sure which.
In me it went to gallstones, but looking at it from a gender viewpoint (men get heart problems, women get gallstones) it's not that surprising. Also, I am pretty sure he probably had gallstones, he just didn't know it. Just as I read last night that heart problems are a problem for thyroid sufferers because of the cholesterol connection. Oh great, thinks I. But it's yet another piece of the Dad & me illness equation.
I've even recently started thinking he may have had thyroid problems - I've always assumed they were from my grandmother's side - because he had obesity & heart problems, but also because of the myriad symptoms he had, like mine, of insomnia, anxiety, weight gain, hair loss in the same place, fluid retention in the legs, puffy white skin, and, most oddly, the fact that he had no body hair. Completely hairless legs and chest! I thought that was weird even as a kid, since all the men I saw around me looked like apes.
So quite possibly dad had thyroid disease, undiagnosed, as well as a possible gluten/coeliac problem, undiagnosed. I could understand the doc's smug certainty if they were all so prompt at diagnosis, but mine's couldn't even diagnose thyroid deficiency - I had to do that myself. Like I had to diagnose a B12 problem. And then he wonders why I fight him all the time for tests...
I'm not sure if you mean he fights a losing battle against me, Sparerib, or just against the bad science of medicine. If it's the former, I'd have to agree with you! Poor man.
Thanks chancery for the link. I have taken a keen interest in coeliac in the past few years. My daughter was diagnosed with spastic colon when she was 6 years old. Spastic colon was name changed to Irritable bowel syndrome. Name changes have mixed outcomes because the old name bares no connect to the new in many cases. Some people were just given meds to slow the lomatil.
I am posting a link to coeliac that you may have seen which mentions IBS.
Coeliac is a very complex illness because it can attack ANY organ of the body, mild moderate or even severe symptoms. With coeliac in my family I am going for antibodies testing this Friday. Some patients can be "silent" sufferers as well. With what you have posted I believe you are on the right road to find your answers. I know one of the other posters here is very knowledgeable on the problem and posts or comments quite often. One last point that I believe complcates the problem is that many may have been diagnosed wrongly with IBS and buy over the counter drugs for the stomach pains.
You are absolutely right, Oldsoldier, Alessio Fasano says that diseases like IBS and Crohns are often just manifestations of coeliac disease. It's that old doctors' favourite: 'one symptom, one disease'. Once they've paired you up, they stop looking. There's no Houses in the NHS!
Thanks for the links - just going to check them out now.
Abstract from Root Cause by Izabella Wentz.
People with Hashimotos are five times more likely to be diagnosed with Celiac disease. Recently gluten intolererance has been described as a spectrum, with only the most severe cases of damage being diagnosed with Celiac disease.
Additionally some people have a celiac like intolerance to milk proteins (whey and/or casein), egg proteins (ovalbumin) or soy proteins.
Chancery, I guess it is hard to put an exact number on the amount of people who have this disease as many people with minor symptoms might just eliminate the foods that they are intolerant to without ever seeking medical help.
I think what is known is people with an auto immune disease are more likely to suffer from intestinal permeability as the gut controls the immune system.
Therefore, we must be more suseptable to gut bacteria imbalances, Candida and the like, and gluten having a direct impact on intestinal permeability, even in the absence of Celiac disease.
I am not Celiac but a long term undiagnosed thyroid condition caused low stomach acid inciting abnormal gut flora, impaired digestion, leaky gut, food intolerances, malabsorption leading to nutrient deficiencies, inflammation, pain, and Celiac like symptoms.
I have benefited from following a gluten free diet, allowing my gut to heal and be replenished with healthy gut flora. Now, as long as I stick with it most of the time, I seem to get away with the odd bit of gluten when eating out.
Hi Flower, yeah I've heard Alessio Fasano, the coeliac researcher, say that coeliac is on a spectrum. He also says it can present in very non-'classical' ways, i.e. people may have neurological symptoms long before they show any gut symptoms. The annoying thing is doctors don't treat any problems you may have with wheat seriously unless you have diagnosed coeliac disease. They just assume you are following a fashion. Very frustrating!
The Dutch study looks like a good start. 16 out of 104 patients (around 15%) is a lot larger than the 3% quoted average. It would be good if there were a follow up study based on a larger size (cohort size if I remember). Interesting stat though. Bob
I know. I thought that, Bob. 15% is not so very different from 20%, when compared to 3% at any rate, which does kind of suggest you could flip the 21% (I think it was actually 21%, not 20%!) of coeliacs with thyroid to a similar figure of Hashimoto's sufferers with coeliac, which COULD suggest that in fact most Hashimoto's sufferers do have coeliac disease. A great finding if it's true. That would mean that if it was caught early enough, Hashimoto's sufferers could reverse their condition simply by giving up gluten. Simplistic, I know, but still exciting!
Thanks for your reply Chancery. I'm a DMT2 (T2 diabetic) who was diagnosed with low thyroid at the same time. At least my Dr spotted that diabetes and thyroid often go hand in hand. I'd not considered CD (coliac disease) as I have no obvious symptoms and although I've reduced my gluten in dieting for diabetes I haven't eliminated it.
I did find this 2010 article written in a US publication (Today's Dietician) which quoted studies by Canaris and Univ. of Chicago Celiac Disease Ctr. as "About one half of the approx. 27 million people (US?) with thyroid conditions have not been diagnosed, and almost 97% of the approx 3 million Americans (US?) with celiac disease are undiagnosed."
It also quotes 4.4 times as many celiacs having hypothyroidism as the general public. This seems in line with the 15 - 20% figure you were quoting.
If there are inexpensive CD tests, it would suggest that these are worth considering on diagnosis of hypothyroidism or at the very least an autoimmune subset such as Hashimoto's.
Oh poor you, Bob, you got the unlucky hand in the autoimmune cluster and got landed with diabetes. That's a dread of mine. You have my sympathy.
But don't those stats of 'lost' diagnosis scare the bejesus out of you? When you consider how many poor souls' lives are going down the toilet as they accumulate drugs and more drugs, dealing with individual symptoms, but make no actual progression because the REAL problem is completely overlooked, it's worse than the so-called 'obesity epidemic' they all keep raging about. Perhaps if they didn't do the 'one symptom = one drug' routine so much we wouldn't have an obesity epidemic, since they might actually learn something from dealing with real diagnoses rather than patch-up jobs.
Here's an amazing article I just found, making some great connections between neurological damage and coeliac disease. It's of particular relevance to me because I have brain damage from unknown causes (trigeminal neuralgia) and a family history of Alzheimer's, which I am keen not to repeat. But you'll find that it talks a lot about the fact that coeliac isn't a gut issue at all, per se, and you'll also find all the autoimmune culprits there, including thyroid. It's a great piece for me personally because it offers the first real breakthrough I've found in linking my trigeminal neuralgia to autoimmune issues - needless to say, my doc doesn't believe in this theory, so I'm hoping to give him some pause for thought here.
I don't feel "poor me" at all. The following is a bit long winded. You don't have to read it!! In summary, the better we understand our conditions, the better we can deal with them and hopefully improve. I'm sure we can do better than the "one symptom, one condition" school of diagnosis.....
Type 1 Diabetes is the nasty one - the bodies auto-immuninity attacks the pancreas cells that produce insulin, hence they need to monitor their blood glucose and adjust their insulin injections.
My diabetes is Type 2, usually blamed on lifestyle - poor diet and lack of exercise. I did exercise but not every day and my diet was fine though my portion control was somewhere between undisciplined and non existent!
However I had been on 2 blood pressure tablets, both of which predisposed you to Diabetes T2 (and more than doubled the risk if you took both).
There is a phrase - metabolic syndrome - which might better describe someone with both diabetes and hypothyroid and may be extended to other conditions that often coexist - the full range of autoimmune conditions.
My own "crank" theory of the tipping point for me is that a campylobacter infection (5 years ago & self inflicted by undercooking chicken) had a disastrous effect on my "good" gut bacteria (no more details as even this is too much info!).
A couple of years later, came the diagnosis of diabetes and hypothyroid - I was on pills for both.
With regular exercise and a better diet I'm now over 2 stone lighter, don't take any pills for diabetes but have increased the levothyroxine (T4) a bit. What with statins and blood pressure I still rattle a bit, but health wise I actually feel pretty good. I had to buy loads of new clothes but they make you feel good, so I don't begrudge that.
So I'm quite happy with my "glass half full rather than half empty" attitude.
I hope that your analysis of the "root cause" of your coeliac and related problems is spot on and that things turn around for you p.d.q. weeks rather than months rather than years.
What I have found is that by daring to read the scientific papers researching into conditions that affect me I've got a better understanding of my situation and that I can then make lifestyle changes to tackle those issues. I hope that you and anyone else reading this can identify the root cause(s) of their situation and make a positive improvement by their understanding of things. By reading up on the specifics that affect us we can often become more knowledgable than our GPs who (by their name, general) can't be masters of all.
Ah, so you believe in the microbiome theory of illness. A sound choice. I'm reading Rob Knight's "Follow your gut" right now, which is all about that. You'd enjoy it, if you haven't already read it. I can also recommend Martin Blaser's book on the same subject, the name of which I can never remember! Gut microbiome is at the real cutting edge of medical research right now, in my opinion, so you're ahead of the curve there!
Couldn't agree more on the value of doing scientific paper research ourselves, although you're a lot kinder to GPs than I am, I just think they don't care, probably because caring isn't why most of them are in medicine. But I'm a rotten cynic.
Good luck with your continued health success. Long may it continue. X
Thinking about it, I developed wheat intolerance long before I realised I had a thyroid problem. I probably do have coeliac sprue but I doubt the test would be positive as I'm unwilling to eat bread and make myself very sick for six weeks before taking that test!
And thinking about it some more, I would lay money on my mother (only ever diagnosed borderline hypothyroid and never prescribed thyroxine) and her mother before her (hypothyroid and almost certainly not prescribed enough Levo) being wheat intolerant too. My Mum had what she called IBS - never formally diagnosed, and my Nan had Ulcerative Colitis. All sounds a bit suspect, knowing what I know now. There's a family trait for sure. Of course, my own thyroid problem would never be recognised as such by my GP either, as my TSH just didn't go high enough.
But you've got me wondering about chicken and egg. Is it the antibodies I've developed against wheat that are attacking my thyroid? The only antibodies tested for are TPO and TPA - but what if we should be looking for others?
Absolutely, Jazz, on both the big scary pointing hands to be found among relatives and their medical histories and on the 'what antibodies should we really be looking for here?' This is my 'epic voyage', working on both these principles.
I started out with gallstones; that was my first serious illness, i.e. that landed me in hospital. I searched everywhere, since it was such a common everyday illness, I was told, for how it had happened, determined to make sure nothing like it ever happened again. It was then I first discovered that the extent of ignorance in medicine is truly epic. They don't know more than they know. No-one had the first clue what caused gallstones. It's to do with cholesterol, they mumbled, and that was it. Eventually I had to give in and have the gallbladder removed. I was deeply frustrated that I had been unable to save it in any way. And I moved mountains in life changes and research, all to no avail.
Then a year after that I suddenly developed trigeminal neuralgia, an incurable degenerative neurological disease. That was even worse: because it was rare, no-one knew anything about it. Less than. Drugs, drugs and more drugs was the answer to that one. With terrible side effects. It depressed me so much I desperately started researching, seeking out other sufferers, exploring everything and anything I could. All along, and I said this to my doctor, to a very withering look, I felt that the gallstones and TN was related and it was a degenerating path. Because that degeneration was now in my brain I was very afraid, and very determined.
To cut a long story short, purely by my own efforts, I have in fact discovered that they ARE related, and possibly part of an even larger autoimmune problem. I have many pieces now, but still not quite enough. So the research goes on. Had I left this to doctors I would be still in excruciating pain, lying on my sofa, completely obliterated by drugs. I would not have discovered I was hypothyroid or that I had malnutrition/B12 problems and a possible autoimmune issue (still waiting test results on that one).
So for me, yes, I have never been satisfied with 'one symptom, one disease' because it's never felt like the end of the line to me. If all the ducks don't line up in a row, I don't believe it. I don't think my thyroid problems are the end of the line. I think something made the thyroid go wrong, and it has to be something in my environment. Yes, my family genes have been stacked up against me, but I don't have to accept that fate.
For me coeliac/gluten/wheat seems like the most likely villain in the piece, and that's purely on gut instinct. Wheat has never sat right with me. I know this will sound nuts, but all my life I've had to eat something with wheat to make it palatable. I think if you have to persuade your body that it needs butter, jam, gravy, curry sauce or fondant icing and a cherry to make something taste edible then there is probably something wrong there! I've often thought one of the fastest ways to do food intolerances would be to ask people to eat the food in a normal portion all by itself, no trimmings. If people pull faces, or find it difficult, you've found your culprit!
I know, laughable and very unscientific, but I think it's more reliable than you might think. Try it!
I've been tested twice for celiac intolerance by my gp and both times the results were negative. I, perhaps unusually, don't really have any gastric symptoms with gluten. I adore good bread and occasionally it would give me very mild indigestion. Because I have Hashimotos I decided to go GF and see what happened. My antibodies dropped from 750 to 105 within a few weeks and I felt generally better with more energy. I think gluten also effects my mood causing me to be angry and intolerant and more anxious. I am mostly Paleo these days. Any grains cause me to put on weight and puff up. I lost nearly a stone going paleo and that's with eating masses of good fats too! My gp thinks it's all rubbish and that antibodies go up and down regardless but by this much???
I used to have a serious temper and anger problem which was getting worse as I got older. I used to really struggle to keep it under control. And it would flare up for either no reason or for trivial reasons. I gave up gluten as an experiment at the beginning of the year, and in less than a week my temper became much more "normal" and I'm also much more laid back now. My mood has improved noticeably too, although the effect hasn't been so dramatic as it has been with my temper.
My husband was a bit annoyed about me going gluten-free. He thought I was making life more difficult just for the hell of it. Strangely enough he is now completely on board with the whole idea!
Another thing that happened was that my ferritin level finally reached a healthy level. It had crept up very slowly and was still quite a bit under mid-range after about 20 months of supplementing. Two and a half months off gluten and my ferritin shot up, although luckily I found out before it got too high.
The one thing that hasn't improved in any obvious way is my gut health. I still have all the same symptoms I've had for years - bloating, severe indigestion, pain, swelling, diarrhoea.
My ferritin went from 49 to 88 after gf for 3 months. I'm sold on GF now. Last year I would fall off the wagon every month or so with varying results. I'm trying to avoid all grains now although I use gf flour now and then although I puff up quite quickly. Im sure sugar has a major impact on me too. That's another story!!!
That's very interesting, Humanbean. That certainly backs up Alessio Fasano's ideas of how coeliac disease can manifest in psychiatric and neurological symptoms before any gut issues appear. Toast rage, if you will!
But what about your gut issues? I take it you've considered dairy as the next possible culprit? They seem to go hand in hand, both in coeliac and thyroid complaints: in the first because coeliac destroys the gut and it can't process milk anymore and in the second because thyroid causes low stomach acid and it can't process milk any more. Got any possible culprits in mind?
Oh, don't I know that - diet resistance? Oh h*%l, yeah! I am a natural rebel and rebel against ANY interference with my food - even from me. You can imagine how helpful that is!
It took me years, and a lot of work, to make myself realise that food changes were to benefit me, not punish me, and I had to be an adult and help myself. As soon as food restriction enters the picture I'm like a sulky two year-old. I, sadly, do not exaggerate. You have my sympathy, and the best of luck...
Hi Janie. According to Alessio Fasano, one of the leading lights in coeliac research, coeliac disease can show up in LOTS of ways before it does gastric damage or reflects in health complaints around the gut. In fact, he says some people NEVER show gut issues, despite the destruction of the intestines, so it could be responsible for your sore knees or your headaches or your fuddled thinking long before it gave you the runs!
And I know what you mean about your antibodies. That does look like a spectacular result, doesn't it? But apparently your doc is right; they can vary drastically and in odd ways. There doesn't seem to be a very reliable pattern to them. I actually read an unintentionally funny remark about them in a thyroid book recently where the (doc!) author said, "Just because you have very high thyroid antibodies doesn't mean you are sicker than someone who has lower antibodies, it just means you are far more likely to develop a permanent thyroid problem". And how would having a permanent thyroid problem not be being sicker? You do have to wonder at the thinking behind that.
I would have to be on your side though. If the antibodies dropped quickly, as in a few weeks, as opposed to over 6 months, I'd be tempted to think 'yeah, it's related'. It seems too much of a CIA coincidence to suggest they drastically disappeared just as you happened to give up gluten, a known autoimmune problem maker. Not swallowing that one - every pun intended!
Interesting thread, I've got hypo symptoms (but normal TSH and fT4). Waiting on full thyroid panel tests...
but in the meantime I got a stool test back (I was looking for anything unusual from various trips to Africa) and all seemed fine other than the fact my gut is producing no IgA: 5, on a scale of 50-200.
It seems IgA is first line of defence in the gut, so low production could lead to autoimmune issues. Low/no IgA can also produce false negative on a celiac test (brwellness.com/docs/secreto... Might be difficult to know if it's cause or effect, but certainly part of the puzzle. I'm also testing for thyroid antibodies now to see if they're linked.
I wonder how many people with Hashimoto's or other autoimmune issues are linked to IgA?
Ah Mark, a fellow sufferer! You're the first (I think!) IgA deficiency sufferer I've met. I only have partial IgA deficiency, i.e. it's not as low as yours, but do you know that having IgA deficiency IS an autoimmune condition all by itself? And if you test for coeliac, which you should, because IgA deficiency s a marker for it, you must have an IgG test, not an IgA test (the normal gold standard test) because it will give a false negative.
I am currently engaged in an ongoing struggle with the NHS to actually get the necessary IgG test, but you are in a much more fortunate position than me. You are actually deficient, not borderline, so they've no call to refuse you! You can find all the necessary info on the Coeliac UK site or in the NICE guidelines. Of course, you may not be in the UK, so all this is moot.
I should think there's a high incidence of Hashimoto's/coeliac/IgA, and unfortunately an even higher incidence of people like me (potentially!) who have all three and don't know it!
Thanks Chancery, I'll check out the Coeliac UK site.
The quirk to this is that my blood serum levels of IgG and IgM are bang in the middle of reference ranges, and IgA slightly elevated but comfortably within range.
Saliva IgA is also slightly elevated but still in the green zone.
So it looks like it's only in the gut... which seems unusual... so I'll need to read up on this to understand how/why/implications.
Oh - well that's a whole different ball game. I've never heard of that and had no idea it occurred. I'm just looking back and see you said it was a stool test, not a blood test. Oh well, I could be being completely ignorant here and giving bad advice because I have NO idea how stool tests vary from blood tests. And I see your blood tests are normal. Well that's the ones they use for coeliac testing, so you would be scuppered there for a positive result - although I don't know if you really want a positive coeliac result!
I'd love one - how sad is that? But it would be such a neat solution to my cluster of problems. But I doubt God's going to let me off that easily. He hasn't so far!
Hey, but I'm really crushed now, I've lost my only friend. Once again alone into the breach of being IgA deficient.... (sound of violins off)
Haha sorry to leave you already, although I'm sure there are other IgA deficient people out there... we just need to get you hooked up
My theory is:
... Low IgA in the gut increases autoimmune response generally in the body.
... which attacks/stimulates the thyroid, increasing T4 production and lowering TSH a bit through the feedback mechanism (this is Graves disease, a form of hyPER-thyroidism)
... but my body still feels hyPO-thyroid because my DIO2 mutation slows the conversion of T4 to T3 in the cells
...so the remaining (excess) T4 is converted into reverse T3 which gives me the extreme fatigue.
Sound plausible?
I've ordered some thyroid antibody and T3/T4 tests so we'll see if any of this theory holds out in practice!
That sounds plausible, Mark. Although I think low IgA allows autoimmune attacks rather than increases them. But don't sell your house and take up immunology on the strength of that opinion, some of these things are so complex you could study them all your life and not be much further forward!
In my case the thyroid attack has left me hypothyroid with a high TSH and low T4, but no two people are going to express this in the same way, and remember I am lower in IgA then you are - that might make all the difference.
What is your DIO2 mutation? I don't think I know that one. I assume you've had gene testing? What for? I mean what were you looking for specifically? More importantly, what did you find?
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Study: "Thiamine and Hashimoto's Thyroiditis: A Report of Three Cases."
