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Diagnosed As Child And Diagnosed Again As An Adult


Gluten free Gaynor

Anyone told they had outgrown celiacs?  

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Gluten free Gaynor Newbie

Mum won't talk about it now.

As a teenager I ate everything always supper skinny always constipated always anaemic. Anyway one day mum mentioned That when I was about 1 they thought I was dying constant diahrea, weight loss hair loss, admitted to hospital for tests, result was something to do with wheat. I suspect that after 6 months to a year the local paediatrician told my parents to try me on wheat again and when the same symptoms didn't occur told them I had outgrown it. I then had the other symptoms for as long as I can remember with some symptoms popping up occasionally like migraines and skin rashes. Then six months ago I went to the doctor with hot flushes and mood swings. She did a full blood work up, it wasn't early menopause, or a thyroid issue but I was severely anaemic and wanted to get to the bottom of it. She sent me for cealiac serology and a test for bleeding in the colon. The cealiacs serology came back positive I've responded to a gluten free diet. Has anyone else had a similar experiences? I believe that it was not uncommon in the 1970's to be told you could or had outgrown it.


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tom Contributor

I'm one. DX'd as a toddler in the 60s & gluten-free until I was 5, when the Dr, following standard thought at the time, said I could then be on a normal diet BUT she did include the warning that it'd come back "when I was old". Guess I got old at 35.

If 'celiac trigger' theories are correct maybe I go another decade or two if not for the trigger of my little brother's plane crash death. Celiac was probably gonna hit at some point, I suppose.

There are others here dx'd as kids, then regular diet until it came back. At some point the phrase "banana babies" meant sick kids who got healthy off wheat. I've mostly heard it here and don't know how widespread it was, but I think it also denotes that they'd be put back on wheat during childhood. Always makes me wonder just how many bananas/day were they feeding these kids?

elye Community Regular

It didn't happen to me, but to my husband, and it was in the early sixties. We didn't hear anything about the disappearing celiac disease until I was diagnosed five years ago. I consequently became educated in all things celiac, and one day I turned to my husband and said, "Hey! YOU very likely have a problem with gluten, as well -- you're the one with all the gas and bloating"......I mentioned it one evening when my mother-in-law was staying with us, and she said, "Well, actually, yes....he WAS diagnosed with celiac disease as an infant. As soon as I started him on wheat, his stomach became swollen, he would cry hysterically......so I was told to stop feeding him wheat and try re-introducing it in a year or so. I did, and by the time he was three, he was eating wheat without any noticeable problems. He had outgrown the condition". <_<

We are now BOTH gluten-free.... . . ..

codetalker Contributor

I predate the previous posters. I was DX'd as a "celiac baby" in 1952 at Johns-Hopkins. A couple of years later, the doctors felt I had outgrown it and told my parents to put me back on a regular diet. All I was told while I was growing up was that I had been "sick as a baby". No mention of celiac until my late 30's. The way my mom explained it, they were worried I would use celiac as an excuse to be picky with my food. When I was finally told, the explanation of the condition was all wrong. It was several years later and a lot sicker than I already was when I finally figured out on my own that I needed to be gluten-free.

Thinking back to my childhood, I can recall what I now recognize as gluten reactions. In particular, I remember detesting barley.

MitziG Enthusiast

Same here. 1978 when I was throwing up 3-4 times a week, doctor told my mom "she can't tolerate wheat or high fiber. But she'll outgrow it." So mom gave me white bread. ;) by the time I was 12 I had "outgrown" my "wheat allergy" as the family called it. By the time I was 17 I was puking again and was told it was probably stress. Fast forward a few years and the puking switched over to chronic fatigue syndrome and myriad health issues...for nearly another 20 years. When my son was diagnosed, I asked to be tested too and was laughed at. Because "that is so rare..." guess what? Its not.

And my daughter also has it. And my mother. And probably my dad.

Gluten free Gaynor Newbie

Thanks for your replies. I was diagnosed the first time just after my first birthday. Diagnosed again shortly softer my 41 st birthday. Sometimes I get mad about it but it helps to know it was because of ignorant doctors and not dubious parenting.

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    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
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