Can Coeliac symptoms come and go pre diagnosis?


I've been hypothyroid since I was 20, (now 37) and had varying degrees of wellness since. My levels can vary at times it seems. I'm now probably not making any of my own hormone at all and so rely on ingesting it through tablets. I've learnt that different things can affect its absorption and metabolism; not least recently simply being poorly with a cold!

However, while pregnant (and had a lot of issues with levels then) it was suggested that I maybe get tested for Coeliac disease by a consultant obs who was giving a talk at my British thyroid association meeting. I asked if stress affects thyroid levels, she said it could affect absorption of the hormone, and then later when I described the change in levels I had to go through she said it was worth getting checked for Coeliacs as there can be a link.

Other than aches and pains and fatigue (which I can attribute to many things) I don't seem to have any more symptoms, though I used to suffer terribly with constipation and wind pain (but this can be thyroid symptom too!) I'm slim (never weigh over 8.5 stone, usully much less) and sometimes loose weight rapidly, sometimes get a bit puffy, but again can attribute to thyroid and general fitness etc.

So - could the Coeliac 'Flare' at times in my gut thus reducing absorption?

I'm going to ask the Dr for a test tomorrow but aware that blood test can come back negative so may have to push for a biopsy. Or maybe I'm clutching at straws!



8 Replies

  • Coeliac disease has many different symptoms, and there does seem to be a link with thyroid problems. Coeliac disease damages the gut and affects absorption. It seems like a sensible idea to get a test. Good luck with this.

  • Hi Haggisplant,

    Yes definitely go and get tested for coeliac disease.

    You say you are hypothyroid. Do you know WHY you are hyperthyroid? i.e: have you ever been tested for Hashimoto's? There's a growing understanding of a link between Hashimoto's hypothyroidism and gluten sensitivity.

    I don't have a huge understanding of the subject (not having thyroid problems myself), but I think you would need to ask for a Thyroid Peroxidase (TPO) antibody test.

    As you may already know, TPO is an enzyme in the thyroid that is responsible for thyroid hormone production.

    The gluten molecule is very similar to one of the thyroid gland molecules. This then can confuse an over-zealous immune system in a gluten sensitive person into attacking the thyroid - as well as dealing with the removal of gluten.

    Please do your own research on all this though!

    HealthUnlocked has a thyroid support group which may be another place you can go to get advice.

    Good luck tomorrow, I hope you let us know how you get on.

  • Hi thanks for replying!

    New Dr agreed that coeliac test was totally reasonable, will get that and another thyroid test in a month.

    I'm surprised my Tsh was still much higher than usual when I'm on 150 Levo (2.36, usually 0.5/3) but she said it could be getting over a virus.

    I know I had antibody test 17 years ago and dr said they were raised, more recently I asked what they were and I seem to remember they weren't TPO, but a different one.

    I now have 2 questions!

    1. If the blood test is clear do I push for a biopsy?

    2. Can symptoms come and go or 'flare' so to speak, if not gluten free? Ie is it possible at times my gut flares and I don't absorb thyroxine?

    Thanks again!

  • Hi Haggisplant.

    I believe that the TPO test has several different names, so you may have had it and not understood what it was. Raised antibodies would be of concern to me (if it was my test) because I would want to understand why, i.e what is the underlying cause(s).

    I'm not medically trained so I'm not sure how well I can answer your questions; but being a coeliac, I'll have a go.

    The NHS routinely do something called a Ttg blood test for coeliac disease. My understanding is that if the blood test comes back clear, then there is a very high probability that you won't have full blown coeliac disease (the test is thought to be up to 95% reliable in these circumstances).

    However, the difficulty with the blood test is that it's less reliable if you are in the much earlier stages of coeliac disease (I think the test accuracy might even drop to as low as 33% for some people).

    In answer to your question, I do believe that a small number of people have been diagnosed on a biopsy alone; but my understanding is that this is quite unusual. It's also worth noting that the biopsy procedure is invasive because it has to be done via an endoscopy, so it's not to be taken too lightly.

    Another important thing to bear in mind, is that coeliac disease is only one form of gluten sensitivity. That is, you might not be a coeliac at all (the blood test could be completely right!) - but you still might have a sensitivity to gluten.

    If you have a good GP, then they will have heard about something called Non-Coeliac Gluten Sensitivity (NGCS). So if your coeliac blood test does come back negative; you still may benefit from trying a gluten-free diet to see how you feel and if it has an impact on how much levothyroxine you need to take long-term.

    This link is a bit technical but you might find it useful if you want to know more general information about coeliac blood testing:

    Symptoms: They vary widely from person to person in how they present. Coeliac disease is an autoimmune condition - because it's the immune system that causes the inflammation (and for many people this then damages the intestines in its quest to get rid of gluten). If the intestines are affected, this then affects the absorption of many things like vitamins, minerals and probably medication as well, especially if your symptoms include frequent diarrhoea. However some Coeliacs get no intestinal symptoms at all! - I know I didn't get any of the classic gut symptoms for many years. Then when mine did start to appear, they presented mainly as a lactose intolerance, rather than a gluten issue.

    If you want to do your own research on the NHS procedures for diagnosing coeliac disease; the NICE Guidelines CG86 are sometimes worth a read.

    The connection between thyroid issues and gluten sensitivity is much more recognised in the Functional Medicine community rather than by the Traditional Medical fraternity. Traditional medicine seems to be lagging some way behind; even though there is a significant amount of research and anecdotal evidence out there on the subject. This means that you may have to spend more time looking through the info on the web to enable you to make your own decisions about what's the best and right thing for you.

    Good luck and do let us know how you get on.

  • hello Haggisplant - I agree with what Regalbird has said and I just want to add a couple of points: I have a gluten sensitivity condition and had an underactive thyroid - this has now come back to normal after following a gluten free diet - it took a year or so. This was not related to thyroid antibodies and we presume that it was the anti gliadin antibodies (to gluten basically) that damaged/hurt my thyroid - so its not just hashimotos disease and there is a definite link between thyroid illness and gluten. It could of course have been sick thyroid syndrome, which is where when you are ill this in itself can affect the thyroid. A good book is one by Dr Datis Kharazian (? spelling) who understands this link (it mentions thyroid but I cant bring the title to mind but you will know the one I mean on Amazon!). So yours could be the same and your symptoms fluctuating because of similar reasons - you need tests for ttg and or anti gliadin antibodies - try not to let them get too hung up on whether the biopsy is positive or not - more and more there is evidence that gluten sensitivities can affect any part of the body and that coeliac disease - where there is enteropathy - is the end stage disease! Gill

  • Thank you for your replies :)

    I'm getting coeliac test and my dr has agreed to put my dose up to 175 (!!) - I'm surprised at how high this is but hey ho I just want to feel better. I've severe tendonitis in my hand and bad si joint pain many due to hypermobility, c section and probably slightly less than good thyroxine levels. And a toddler and teaching children with ASD (or ASC)!

    A couple of years ago I focused on fitness and did reduce gluten (well, more ate v healthy things eg rice, lentils etc) and my dose dropped slightly, so if the test comes back negative I will look into gluten free to see if I improve at all.

    Thanks again for your replies!

  • Sorry, CD doesn't come and go. I wish it would (and ....... forever.)

    If you are a certain genetic type with HLA DQ2 or HLA DQ8 you may be at risk. If you develop antibodies to eating gluten - every time you eat it, (anaemia, constant diarrhoea and weight loss in my case) then you get referred on for an endoscopy. Why would you want an endoscopy if the bloods don't say so? (It's a bit like root canal work.)

  • Thanks Jacks.

    I wondered if it flared as other autoimmune diseases. As with thyroiditis. Because of it did then it may affect absorbtion of my thyroxine. But as you say, it will flare when gluten is eaten.

    I wouldn't want an endoscopy! I had just picked up that sometimes bloods aren't accurate.

    But after lots of reading I'd possibly attempt gluten free to see if it helps my thyroid symptoms at all.

    Thanks for your reply.

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