I Think My 10 Year Old Son Is A Celiac

[Peta]

Hi I am new to this forum...and still not 100% sure I need to be here. My son's diagnosis is not yet confirmed.

My son is 10 years old and has recently been tested for Coeliac Disease.

When the results came back his blood levels were just under normal range (not of great concern to Doc on its own), but the test for Celiac came back BOTH positive. I am not sure exactly what these test were but I know that they are a relatively new test especially for Celiac. They were for antibodies?? Not sure how great his chance is of having Celiac based on the results of these tests??

My sister and 4 year old nephew both have Celiac Disease so I am aware of the strict dietary needs (although definitely need to do more study).

My son still has to undergo the bowel biopsy but I am unsure how long he will have to wait until this is done. In the meantime I am keeping on all gluten (even though I fear I am just making him ill).

What do you think these tests may have been? How accurate are they?

Anyway, I know that I will certainly be relying on this forum if his diagnosis is confirmed as I have SO many questions?

Thankyou for taking the time to read my post,

Peta

[nikki-uk]

Hi and welcome!!

It is difficult to say how accurate the tests were for your son without knowing what they were.

The 2 most commonly (and accurate) tests are;

Anti Tissue Transglutiminase IgA (Ttg)

Anti Endomysial IgA (EMA)

It sounds as if your doc has good cause to warrant doing a biopsy coupled with your family history (and yes, your son needs to be eating as much gluten as he can until then!)

Does your son have any symptoms at all?

Hopefully his appointment will come through soon! .It really is a personal choice if you want your son to have the biopsy or not. It is known as the 'gold standard' for diagnosis for celiac disease.

My son had the biopsy as he didn't really have many symptoms - but plenty of people here didn't want that for their child as they knew immediately they removed gluten from their diet how much better they were.

Good Luck, and feel free to ask any questions!

[Guest nini]

my daughter didn't have the biopsy, with a strong genetic predisposition and symptoms, her positive dietary response was more than sufficient to dx. her with gluten intolerance (which is the same thing as Celiac... lifelong avoidance of gluten in the diet) and her recovery has been remarkable. I have been told by several renowned Celiac experts that the biopsy is quickly being replaced as the "gold standard" by blood tests and positive dietary response. The biopsy can only confirm the dx of Celiac it cannot ever rule it out, so that is why I would never put my child through it. Ask his Dr. if he will accept a dx based on the blood work and confirmation with positive dietary response instead of the biopsy (do you really need the Dr.s permission anyway?) That way you can get on with the business of getting him well.

From what I have learned, there are no false positives with the blood work, so if the antibodies show Celiac, then it's Celiac. It's your choice to put him through the biopsy or not, but I am one who will recommend against the biopsy and just try the diet. If the diet works, voila! you have your answer!

[Peta]

Thanks for your replies.

Nikki... My son does have some symptoms which is why I went to the doctor and asked for him to be tested for Celiac (the doctors here aren't very informed about Celiac so would never have suggested the test).

He is very thin and often a little pale, although eats well. He complains of pains in the stomach and sore joints...and has tiny skin bumps and a bit of exma (spelling?). Over time we have thought he was maybe lactose intolerant due to his pains and diarrohea but turns out he wasn't.

It was only since my sister, and recently my 4 year old nephew, have been diagnosed I began to piece all these symptoms together and figure he too must be celiac.

I will allow the biopsy because after this he will be able to see a celiac dietitian and receive more support (these are only provided after the positive results of a biopsy).

At first his appointment was made February next year. I rang and said that I felt that it was too long to keep him on gluten if he was infact Celiac as the blood tests suggest. The specialist at the large hospital agreed and so I am awaiting an earlier appointment.

Peta