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Thyroid Issues And Celiac?


mazz

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mazz Newbie

I have just been told I have thyroid nodules and am borderline hyperthyroid (my TSH is at the bottom of the normal range and T3 and T4 are at the top). A friend told me about the link with celiac disease and having read around a bit I'm starting to wonder.

I've been having lots of problems with anxiety, heart palpitations and panic attacks. Feeling very tired all the time. The issue that's really bothered me recently has been painful swollen glands in my neck and under my right arm (my initial thought was breast cancer but they've done a batch of tests and that all seems to be fine, but that was how they diagnosed the thyroid nodules).

I nearly always have a phlegmy cough that won't go away - periodically get told it's asthma but it's not really a wheeze, it's just a constant annoying cough. I pass something nearly every time I go to the toilet - it can be 4-6 times a day or even more. Mostly it's solid and looks fairly normal but it nearly always floats. My stomach is often bloated and sometimes I can actually feel or see where the upper part of the bowel is blocked for a while. I've never really given the stomach issues too much thought as things always move on eventually, but thinking about it I can remember even as a child having quite painful stomach cramps and not knowing why - nothing was ever looked into or done about it.

Could this be celiac? My problem is I'm living in Kuwait and finding the medical system both expensive and not very intelligent - the doctor looked at my thyroid results, clapped his hands, said everything was within the normal range (just) and sent me home. So I feel totally disinclined to go back and hassle him for yet another test - he has already decided I'm a hyperchondriac. I could wait and get tested when we're back in the UK but if going gluten free would sort out some of these issues, particularly the gland issue, now, I'd much rather just get on with it. I have a good friend who's a nutritionist who says you can have a perfectly healthy and nutritious diet without any gluten. Is it okay to go ahead and try it for a few months, until we go home, without a diagnosis?

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TeknoLen Rookie

Welcome to the board! I am sorry to hear you are going through this but you have landed in a community of caring people, all excellent resources, any many with first-hand experience. There can indeed be a connection between thyroid problems and Celiac. In fact, you don't need to be Celiac, you can be just gluten-sensitive and that is enough to trigger the auto-immune response necessary to jam up the thyroid.

First thing I would recommend is not to dismiss your intuition, even if professionals of the medical community try to minimize what you are experiencing. There are good doctors out there who "get it" and will work with you as a partner, although it can be a challenge to find one. First step is to get a good MD (one who gets it) on your team, preferably an endocrinologist or internist, preferably board certified, preferably "integrative" (not solely a western medical approach). You may have to kiss a few toads... I am not trying to be alarmist but hyperthyroidism is serious so make sure you start looking for good endo MD soon in case you have to churn through a few different docs. Mary Shomon's website about.thyroid.com has a "top doctors" directory, click on Open Original Shared Link to check it out, perhaps there is one in Kuwait or somewhere nearby you can catch a cheap flight to.

I see you mentioned your doc tested your TSH, T3 and T4. Did he or she perform any thyroid auto-antibodies tests?

Next is read, read, read. You can do thyroid searches on this board and learn a ton, about your symptoms, vitamins, different diets, anatomy, lab tests, etc. There is also a good book by Mary Shomon, "Living Well With Graves' Disease and Hyperthyroidism". It will give you quite a bit of good info and I think the book is only $10 or $15 USD, although I am not sure how much shipping to Kuwait would add. This knowledge will make you a better, much more discerning patient once you do find a doctor, I guarantee it.

Then there is gluten, nasty insidious gluten. It is everywhere, even in naturally gluten-free foods though something called cross-contamination. And based on your description of your symptoms, gluten may soon become your new number one enemy as it is for so many here. There are many others here on the board that actually have Celiac and are much more qualified than I am to give you the best way to get started there with determining your sensitivity. Again, I would say read, read, read. Danna Korn's book Gluten Free Living for Dummies was where I started and it was very helpful since I was starting from scratch.

If you decide to order some books, you might consider adding Paleo Diet by Loren Cordain and a GAPS diet book (Natasha Campbell-McBride), to perhaps bundle some shipping. These are diets that seem to work well for gluten-free folks.

Feel free to message me directly if you have a question, since I do not check the board every day...Good luck!

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mazz Newbie

Thanks for the advice. No, the doc didn't test anything apart from T3, T4 and TSH. He seemed to think I was crazy even for getting him to test those!

I've now been gluten free for a week and I'm already noticing some improvement in terms of bowel movements. Lymph nodes are still swollen although possibly less painful, so I think for the moment I'm just going to stick with it and see how things go. Will look into other doctors but as I'm not feeling too bad and the hyperthyroidism is still "within normal range" (just), I might hang on until we go home as I really don't want to go through the whole doctor-search nightmare twice!

Welcome to the board! I am sorry to hear you are going through this but you have landed in a community of caring people, all excellent resources, any many with first-hand experience. There can indeed be a connection between thyroid problems and Celiac. In fact, you don't need to be Celiac, you can be just gluten-sensitive and that is enough to trigger the auto-immune response necessary to jam up the thyroid.

First thing I would recommend is not to dismiss your intuition, even if professionals of the medical community try to minimize what you are experiencing. There are good doctors out there who "get it" and will work with you as a partner, although it can be a challenge to find one. First step is to get a good MD (one who gets it) on your team, preferably an endocrinologist or internist, preferably board certified, preferably "integrative" (not solely a western medical approach). You may have to kiss a few toads... I am not trying to be alarmist but hyperthyroidism is serious so make sure you start looking for good endo MD soon in case you have to churn through a few different docs. Mary Shomon's website about.thyroid.com has a "top doctors" directory, click on Open Original Shared Link to check it out, perhaps there is one in Kuwait or somewhere nearby you can catch a cheap flight to.

I see you mentioned your doc tested your TSH, T3 and T4. Did he or she perform any thyroid auto-antibodies tests?

Next is read, read, read. You can do thyroid searches on this board and learn a ton, about your symptoms, vitamins, different diets, anatomy, lab tests, etc. There is also a good book by Mary Shomon, "Living Well With Graves' Disease and Hyperthyroidism". It will give you quite a bit of good info and I think the book is only $10 or $15 USD, although I am not sure how much shipping to Kuwait would add. This knowledge will make you a better, much more discerning patient once you do find a doctor, I guarantee it.

Then there is gluten, nasty insidious gluten. It is everywhere, even in naturally gluten-free foods though something called cross-contamination. And based on your description of your symptoms, gluten may soon become your new number one enemy as it is for so many here. There are many others here on the board that actually have Celiac and are much more qualified than I am to give you the best way to get started there with determining your sensitivity. Again, I would say read, read, read. Danna Korn's book Gluten Free Living for Dummies was where I started and it was very helpful since I was starting from scratch.

If you decide to order some books, you might consider adding Paleo Diet by Loren Cordain and a GAPS diet book (Natasha Campbell-McBride), to perhaps bundle some shipping. These are diets that seem to work well for gluten-free folks.

Feel free to message me directly if you have a question, since I do not check the board every day...Good luck!

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Skylark Collaborator

The problem with going gluten-free on your own is that you cannot be tested for celiac without a 2-3 month gluten challenge. You may find that you are disinclined to eat gluten again if you feel better on the diet.

Hyperthyroidism can resolve on its own and going gluten-free may really help. If it isn't too hard I'd suggest also eliminating dairy for a time. Gluten and casein are sister proteins and both seem to be able to contribute to autoimmunity.

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    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
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      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
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    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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