Graves patient with coeliac symptoms but normal bloods

Hi I have Graves disease (autoimmune hypothyroid disease), although I am trying to get well on my thyroid meds one of my symptoms that is still a real problem for me is that of loose bowels.......................! Sometimes up to 9 times a day even though I am on massive ammounts of Iron due to low ferratin levels no bunging up for me!!! I asked my GP for a blood test for coeliac disease after researching that it can go hand in hand with Graves disease and he said it's come back normal so you don't have it. I asked him why he thought I was still suffering with my wayward bowels & he said it's probably just anxiety........! Any thoughts from anyone greatfully received!

Debs :D

18 Replies

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  • not sure if everybody is like me but i can't take iron pills or i would just have to live in the loo....when i had my last baby, they can gave me iron pills i lasted a day on them...because i spent most of the day dashing back and to the loo....as long as i stay away from it i'm ok....sorry i can't be anymore help

    janie :)

  • Hi I have the same problem with iron tablets. But you can try different types that suit you better without livin on the loo! Ask your doctor to try a different one.

    Good luck!!

  • Is your Grave's well-controlled? Hyperthyroidism can cause diarrhoea...

    However, 9 times a day in combo with low iron is pretty concerning. Have you been referred to a gastroenterologist? Have you had any investigations performed (like a colonoscopy)? If not then you need to book an appointment with another GP and get this checked out ASAP.

  • Hi

    I am not hyper & have had this trouble consistently regardless of my thyroid status which is why I asked for the Coeliac blood test. As it came back normal my GP will not referr me to any other services or offer me anything apart from prescription for imodium type medicine........................! He said the NHS will not routinely perform endoscopy unless the blood test comes back positive.

    Debs

  • New onset diarrhoea with low iron is indication for an urgent 2 week referral under suspected colorectal cancer guidelines, particularly if you're older than 60 and/or it's been going on for longer than 6 weeks.

    When did it first begin? Does your GP know that you're going 9 times a day? Because that's really not normal in the slightest. Are you getting any pain or visible blood in your stool? Is the iron deficiency long-standing or associated with heavy periods?

    Even if it's something that's been going on for months/years, he really should have referred you to a gastro just to rule out anything nasty. IBS is a diagnosis of exclusion...

  • No he has always just said it was because of my overactive thyroid but now I am actually underactive & it's still as bad, 4 or 5 times is normal for me but also when I need to go, I NEED TO GO! Do you think I should demand a referral and who to??? As I said in my post before once you are diagnosed with a chronic condition the GP just seems to clump all your symptoms under that umbrella heading it's so frustrating. No blood in stool or anything sinister & I would say periods are of normal duration & not causing excessive blood loss. He explained my low iron as due to the fact that I have autoimmune thyroid disease & so have a problem absorbing...............! I have been unwell for 6 years. Thanks for your replies.

    Debs :)

  • Hi have you had your b12 checked, as i have overactive thyroid and when i started having diarreah again i pressumed it was that but it wasnt i have a b12 deficiency as a result of this i have pernicious anemia, just a thought but it could be this

    Paula x

  • Hi Thanks Paula I have had it tested and although it was "within a normal range", it was at the low end so I am supplementing but have only been taking it for 6 weeks so early days I guess I will need to build it up as I think I have probably been low for a long while. It's so hard when you have autoimmune disease isn't it as all things seem to affect each other bit like chicken & egg..............! Thanks for your comment!

    Debs :)

  • Deb, I can completely relate to that, sometimes i feel really rough and i just dont know what illness it is that is playing up!!, they all have the same blinking symptoms, it is really hard.

    Iv just noticed in your above comment that the NHS will not give you a endoscopy with the positive bloods, iv found out today that they have never checked my blood s for this!!! crazy over the last few years they have taken so much blood from me i cannot fathom why or how this has happened, so in my case they only did the endoscopy !!! work that one out lol xxx

  • i'm still waiting for my hospital appointment for my endoscope, as my blood work came back positive, and that was only because my calcium and d3 were very very low..that my doctor decided to send me for more blood tests...at the moment i'm on bloods tests every 12 weeks...i'm on adcal-d3 have been for 3 months and my calcium is nearly normal, but my d3 is still low...on the plus side my thyroid is now working properly...Deb i would go back to your doctors and see if he can help...

    saying that...only for the fact i have moved house and had to register at a new clinic i would still be no wiser about being coeliac...

    wish you the best of luck with sorting it out

    janie :)

  • Janie if your Vit D level is still low after 3 months you may benefit from a single super high dose preparation to get it nearer to the normal range that the adcal d3 can then keep topped up.

  • i've already asked my doctor about it...he wants to wait till the results come back from my next blood test next month. plus he want to wait to see the result of the biopsy to see if its positive for coeliac...and i'm waiting for my appointment from the hospital........so the wheels are in motion...not looking forward to having to eat wheat and gluten again before the test....so it gives a true reading. i asked about a vitamin d injection and he said that it was better to be given in pill form.

    hopefully when my gut has healed the vitamins will absord into my body....as they say time will tell.....it just seems at the moment to be a waiting game..

    at least i now know i'm not going off me trolley...it was the gluten that made me feel so yuk.....

    janie :)

  • Debs11 You need to go see another Dr who will listen to you. Going to the toilet 9 times a day is not normal. Ditto Northern Soul's advice. Any good Dr should be investigating why you are having bowel problems. Do not sit on your problem be pushy with your Dr it's yr health at stake.

  • Hi,

    I had very low level of iron before diagnosed with coeliac. All type of iron tablets gave me heavy diarrhea. Finally I got intravenous iron every 6 months but that was idiot as didn`t resolve the problem. Luckily when I came to London they figured out very quickly that I must be coeliac, was true. After I stopped eating wheat I never had problem, my iron level is normal, everything is very good on my blood. Now just worried about gaining weight as I have a good appetite. I suggest you should avoid eating wheat for a while, see if your bowl function goes back to normal.

  • you should stick to a gluten free diet i was always told by my gp dat i had IBS but it turned out i had overactive thyroid with nodule and graves disease and im a coeliac. Bloods have always come back normal so i think sometimes it depends on the individual. Ihave since had full thyroidectomy and parthyroids removed and im stickin to My gluten free diet and feel so much better and bowls are no longer loose and no cramps. so try GF diet and see how u get on !

  • Hi Thanks for your reply, I feel that my gut instinct is I have something weird going on with gluten & me having Graves. I don't have any blood present when I go & I really don't think it is anything sinister but your right my GP has just prescribed me some meds for IBS to take before food but I think I will try the gluten free idea. I have put it off as recently I have changed from Thyroxine to Erfa (natural dessicated thyroid) so didn't want to change too many things at once as it's hard to know then what is making a difference to your helath & what is not!

    Thanks again for your reply, Graves seems to have a lot to answer for!

    Debs :)

  • i was actually lucky to be give celiac blood tests, an endoscopy and a colonscopy at the same time when i was admitted to a and e very ill with what i think is gluten ataxia, i was unable to walk, i suspect celiac as when i ate a digestive biskit in hospital i came out in a massive rash all over my body, and had sickness and diarrheo i showed the doctors pictures i took of it and the next day they ordered the tests, up to then i was eating gluten for years and years, i think my antibody tests came back negative but then they only did 2 when there are about 6 or 7 antibody tests im still awaiting the biopsies but regardless whether they come back celiac i have been on a gluten free diet for 3 weeks now, have noticed very slight improvements to my walking but still very dizzy, tired, rumbling the biopsy can come back negative because if you think about how big the intestines is, and they take a few small samples at the time those samples might not be the ones that have been affected by celiac, but next to them maybe a damaged part that they dont take, so i dont really hold out for biopsy results id rather stick with the gf diet and see if it feel better hopefully. .the doctors at the hospital ruled out celiac and i can tell in their eyes when i still mention it they think its a joke, because the bloodtests have come back negative. they discharged me without giving me a reason for feeling ill so i dont think they are very good. im grateful they did the tests though but i still havent had a diagnosis.

  • Hi Thabks for your reply, sorry you are feeling so rough! I have Graves disease so have the antibodies for that & I have read that the enzyme in gluten is very similar to the thyroid tissue & sometimes people with autoimmune thyroid disease can [present with coeliac symptoms as their immune system is attacking the gluten enzym but are not true coelicas so all tests for this will come back negative. I am sticking with the GF diet to see if there is any improvement. I have heard that it can take 6 months to feel better once you give up gluten which seems like a long time! I am also very very spotty which I am not normally & have read that this is sometimes due to giving up gluten!

    Good luck

    Debs :)

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