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Gluten Free Was Going Well


stanleymonkey

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stanleymonkey Explorer

okay here's a brief history hope someone who has been through all of this can help us figure out what is going on

its about my 3 yr old

anaphylactic allergies to milk and eggs

allergic to penicillin en clarifying

soy intolerant

had lots of tummy troubles, rashes, behaviour issues, joint pain

sent to gastro

gastro 1 - ran ful, celiac panel, thyroid, liver enzymes, kidney tests, all sorts of tests for inflammation etc related to crohns colitis and other IBD's and only test that came back positive was gene test, everything else okay, referred us to gastro 2 to rule out celiac ( so many autoimmune diseases in family need to know exactly is going on)

gastro 2 - positive genetics plus negative everything else means no gluten issues, hi e her zantac6 for her reflux and goodbye

we went gluten free, first few weeks were amazing, we even made our baby gluten free and this weird rash she had under her chin disappeared.

with our 3 yr old ghing s have slowly been getting bad again, alternating d and c, moods and a swelling on the right

hand side underbelly button that comes and goes.

family doc said go back to gastro 2 as he gave official diagnosis

we know she is not cross contaminated sense has anaphylactic allergies and I make everything it is not a possibility, and we know very quickly if she has had even a crumb of gluten food

any ideas?


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kareng Grand Master

Sounds like my hub's hernia. It was sort of a hard bump. Somedays it seemed bigger than other days. Has the pediatrician felt the bump? Just a thought. Hope you get it figured out.

frieze Community Regular

???chronic appendicitis?

stanleymonkey Explorer

they can't give us reason for her swelling, we go back to gastro at hospital in march, to seethe doc who told us in no uncertain terms she has no gluten issue(which she definitely does), and shards and hugs would solve all her issues

our family doc and nurse had a feel around and asked if she would respond to pain in the area, we had to tell them we didn't know because we don't know what the supposed nerve damage is or where it is, they are furious that was the diagnosis she was given without investigating other causes

stanleymonkey Explorer

and now she has started with random nosebleeds, the dietician said take to the emergency department at the kids hospital, but everything we go for anything they tell us she has a virus, her baby sister had a bad allergic reaction, and was covered I. Hives that disappeared when they gave her benadryl birthday apparently was a virus too!

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  • Posts

    • eKatherine
      Keep in mind that you might also have a dietary sensitivity to something else. Get into the habit of reading ingredients lists.
    • BoiseNic
      I would avoid gluten at all cost. Sometimes there will be no noticeable damage, but it is still causing an autoimmune response that will manifest in some way or another eventually. Throwing up from a macaroon sounds like something other than celiac disease also.
    • pplewis3d
      Thanks, Scott! I appreciate you looking that up for me. Perhaps that will be good enough for someone but not for me...super sensitive dermatitis herpetiformis here. I don't take any chances that I can avoid. ~Pam
    • trents
      Welcome to the forum, Liamclarke! We have reports from time to time of people whose celiac disease seems to go into remission. Often, however, it doesn't last. There is also the question of whether or not symptoms or lack of them tell the whole story. Many of us are "silent" celiacs who have very minor or no symptoms when consuming gluten yet slow, insidious damage is still going on in the gut. The only way to tell for sure in your case would be to be retested after going back on gluten for a period of weeks or months such that sufficient time has elapsed for antibody levels in the blood to build up to detectable levels. And I would certainly advise you to do that and not take anything for granted.
    • Liamclarke
      I was diagnosed with celiac and basically had stunted growth because my body wasn’t taking In nutrients which may explain the weight loss I would take this seriously and get tested
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