Child Celiac Question

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My 11 year old had a celiac blood test that was negative, I have been biopsy and blood confirmed celiac (Father)

My question is can a child have Celiac despite a negative blood result, she has quite bad Keratosis pilaris and does not gain weight and suffers intermittent bowel issues?

What is the next step if our GP has delivered the negative result information to us

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7 Replies

  • Posted

    Hi there. I can only tell you of the experiences of our family. I was diagnosed as having coeliac disease in 1998 after being ill for 2 years. My grandson who is 14 had been having symptoms for some time but had 2 negative blood tests. He then had a blood test which showed he had inherited  the coeliac gene. My daughter insisted that he had the biopsy ,which confirmed that he had coeliac disease. She then had the blood test and was also confirmed positive although she had very few symptoms except for sleeping every time she sat down( which she had put down to the fact that she has 3 children and is always up early and goes to bed late) This is not happening now that she is GF. It is quite compex really and a lot depends on how good your GP is. My other daughters GP did not even know there was a test to see if you carried the gene. You can carry the gene and not develop CD but you cannot get CD if you don't carry the gene. ( think that's right!)

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    • Posted

      Thank you Nat, this is great information, I will try and apply a little more pressure on the GP.

      Thanks

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  • Posted

    For your doctor..

    How to test for coeliac disease:

    1. Confirm your patient is consuming a gluten containing

    diet for accurate results

    2. Request coeliac disease serology,

    specifically:

    i. Transglutaminase-IgA (tTG-IgA) and

    deamidated gliadin peptide-IgG (DGPIgG)

    OR

    ii. Transglutaminase-IgA (tTG-IgA) with

    total IgA level (to exclude the 2-3% of

    people with coeliac disease who are

    IgA deficient)

    3. In select cases, HLA-DQ2/8 genotyping

    may be performed on blood or buccal

    scrape.

    The HLA DQ2/8 gene test can be useful

    when screening high-risk individuals,

    e.g. those with a positive family history,

    to guide the need for further clinical

    work-up.

    How to interpret these tests:

    ? If tTG-IgA and/or DGP-IgG is positive refer

    to a gastroenterologist for confirmatory small

    bowel biopsy. Serology alone is

    insufficient to diagnose coeliac

    disease.

    ? A positive HLA-DQ2/8 gene test is not

    diagnostic of coeliac disease in isolation

    (approximately half of the general

    population are positive).

    ? A negative HLA-DQ2/8 gene test

    has strong negative predictive value

    (<1% likelihood of coeliac disease

    being present) and means coeliac

    disease can be excluded.

    ? If coeliac serology is negative but the patient

    is symptomatic and positive for HLA-DQ2

    and/or HLA-DQ8 then consider referral to a

    gastroenterologist for further work-up.

    ? A HLA-DQ2 and/or HLA-DQ8 positive

    relative with normal coeliac serology is at risk

    for future development of coeliac

    disease and follow-up is warranted. Repeat

    screening is recommended if they become

    symptomatic.

    If your patient is following a gluten free diet prior to testing:

    Option 1 - Recommend a gluten challenge. One option is to recommend 3-6g gluten per day for at

    least 4 weeks prior to testing. This is equivalent to 2-4 slices of wheat-based bread per day.

    Option 2 - If your patient is reluctant or unable to complete a gluten challenge, offer HLA-DQ2/8

    gene testing. If HLA DQ2/8 gene testing is negative coeliac disease can be safely excluded. If it is

    positive, then option 1 is the only feasible diagnostic approach.

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  • Posted

    It might be worth getting a referral to a dermatologist to check if your daughters rash is actually dermatitis herpetiformis
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    • Posted

      This information/points are much appreciated, thank you I'll start with the GP as I would like to eliminate symptoms at an early age of at all possible

      Paul

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  • Posted

    Forget GPs.....they are totally useless when it comes to Coeliac. No money to be made. Every time they write a prescription they get money ......incentives from the pharmaceutical industry..........Coeliacs are worth nothing to them.......because there isn't a pill that will sort us out!

    Insist on seeing a good Gastroenterologist......get your diagnosis and then never ever ever toch the 'glu' again........believe me it's worth it. I was ill for years and have had every test there is........2 years GF free and I feel like a new person.

    Good luck.

    Lyn smile

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  • Posted

    Speaking from experience. My own blood test was negative, but because of my severe symptoms, they did an endoscopy with biopsies and they were positive - so if it can happen to an adult, I'm sure it can happen to a child. Ask to see a consultant specialist. Coeliac disease does run in families and the symptoms you describe, there's a good probability that it is. All G.P's don't know everything about coeliac disease, in fact Coeliac UK give advice to doctors on the subject. If your doctor won't refer you, change your doctor.

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