Child Celiac Question

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!)

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.

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

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

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.