1. Community
  2. Gut, bowel and stomach
  3. Coeliac Disease

Coeliac till 8ys old

Posted , 2 users are following.

mikki872
mikki872

Everybody going to shot me down...But...I was a Coeliac till from a baby till the hospital consultant re-introduced gluten to my diet aged 8. I have suffered with what I thought was IBS from early 20's.. I am now 43 and currently awaiting results from blood test to see if I have Coeliac disease... My doctor is astounded I was ever removed from the diet in the first place...

Any views people... As everywhere I look on the Internet it says u never grow out if it?? Maybe they never knew that 35yrs ago??

1 like, 7 replies

7 Replies

  • aveline
    aveline mikki872

    Posted

    Hi, Mikki!  You're not alone.  I don't think that CD was well understood in past years and I think there are a number of people who have had your experience. In fact, when my son was diagnosed, my MIL sent my husband and email saying that his youngest brother had that and after a high-protein diet, he outgrew it.  This brother was sickly throughout childhood and I want to encourage him to get tested - he was either misdiagnosed as a child or heading for major health problems if he wasn't. 

    There's someone on these boards who was diagnosed at an early age but not with biopsy and now the drs have him eating gluten to do a more accurate test and he may not have it after all. It just wasn't the clear-cut illness it is today.  Well, still not so clear-cut, is it?  But, the medical community is learning and catching up.

    Good luck to you!

    • mikki872
      mikki872 aveline

      Posted

      Thank you for responding..

      I was diagnosed after trying to be weaned onto solids as a baby... I was kept in hospital for quite a while due to my father refusing to take me home until I they found out what was wrong..

      I am positive I have CD..I don't know why it didn't occur to me before. ..( I have all the symptoms) I have been worried something might be gravely wrong with me. .A positive diagnosis will mean I get to correct ALL my ailments which I have been hiding; didn't want to be a hypercondriac!!!

      Thanks again for replying as everyone and everywhere says you cannot grow out of it. But that's what they did with me?? Tbh I wish they kept me on the diet as I have had years of IBS or apparent IBS!!!!

      Michaela x

  • stephen35053
    stephen35053 mikki872

    Posted

    Hello. I am the person mentioned above! I think it depends to a large extent how you were diagnosed. If you were diagnosed by duodenal biopsy then I would assume that that diagnosis was accurate as false positive results from duodenal biopsy are extremely rare. The reason why my diagnosis is now being assumed to have been inaccurate is because I didn't actually have any tests done: it was simply on the basis of a doctor thinking that I looked like a toddler with coeliac disease and the fact that I seemed to get better when I went on a gluten free diet (obviously that is contrary to normal procedures and has no scientific basis).
    • mikki872
      mikki872 stephen35053

      Posted

      Yes I quite agree..I had a gut biopsy done via a tube. Procedures were done correctly: The consultant I was under in Wycombe General Hospital led my mother to believe I could grow out of it and introduced gluten back into my diet when I was approx 8/9 ? X

      Looking back I can now see I have been lethargic and tired all my life.. via various intermittent ailments. . I was diagnosed with IBS.. x

    • stephen35053
      stephen35053 mikki872

      Posted

      If you had the gut biopsy then I would be confident that you have coeliac disease and that the consultant was talking nonsense. But then it was only a few years later that I had the opposite situation of being diagnosed with coeliac disease on the basis of no tests at all only to be told over thirty years later that I almost certainly do not have coeliac disease, meaning not only that I've needlessly followed a gluten-free diet for over thirty years, but that whatever it was that was making me so unwell as a child, and for the last five years or so, was never accurately diagnosed or treated. I would like to think that this sort of error (in both our directions) is less common as the condition has become better understood.

      The only think I have read about which may interest you is I did see that somebody claimed that symptomatic coeliac disease in childhood has sometimes been known to become latent in adulthood. However, I am not a doctor or scientist of any sort, so this is just an idea I picked up somewhere. It could well be complete rubbish. In general, I would assume that it is a lifelong condition which you will not have grown out of and that the consultant who claimed this was misinformed.

    • mikki872
      mikki872 stephen35053

      Posted

      My consultant did believe it was an illness you can grow out of.... Unfortunately it doesn't seem to be the case. For over 20yrs now I have had on and off problems.. But for the last few years my symptoms have become chronic to a point I stopped mentioning them as I felt all I did was complain.

      I am waiting results ...but I know I got CD; since researching I can relate to all the symptoms. I just want to start a gluten free life and be well again.. Although I know I must see the process through.

      I feel disappointed in the consultant that put me back on a gluten diet as I feel I have suffered on and off for years unnecessarily. ..

  • mikki872
    mikki872

    Posted

    Hi another thing that springs to mind...

    Up till about 4 years ago I was a regular gym member. I was very slim and toned but my BMI was always extremely high...Now reading more I believe I never noticed symptoms before as I used to cut carbs and watched my food intake..eating mainly protein/salads. I never could understand why my BMI was high... Now I have read it's common to have high BMI with Coeliac.. I am positive I have never stopped having Coeliac just limited symptoms naturally...

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.