Testing your Child for Celiac Disease

For many of you this information may not be too new, but I have wanted to get out a “what to expect” post for people who are nervous and searching for some information about the two part process in officially diagnosing celiac disease (some doctors will call it celiac sprue). It’s a two part process that can seem mysterious (as it did to me as a new mom), but I want this post to help clear that mystery up.

Blood Test Begins Confirmation of Celiac Disease

It all begins with a basic blood test. Here’s what you should expect for a full “Celiac Panel” according to the University of Maryland’s Center for Celiac Research:

There is a particular series of blood tests called the ‘Celiac Panel’. These tests measure your immune system’s response to gluten in the food you eat.

tTG-IgA or tissue transglutaminase-IgA
AGA-IgG or Antigliadin IgG
AGA-IgA or Antigliadin IGA
Total IGA

The presence of tTG antibodies is highly suggestive of CD, while AGA can be elevated also in cases of wheat allergy.

Biopsy is “Gold Standard” for Celiac Diagnosis

Once that comes back positive, then you move onto the endoscopy and biopsy phase for official confirmation. Officials with the University of Maryland call the intestinal biopsy the “gold standard” for diagnosis. Our daughter was 15 months old and had her procedure done at Children’s Hospital in Minneapolis, Minnesota.

It was a tough morning for everyone. Emma couldn’t eat after 5:00 a.m., so we got up at 4:30 and had eggs and French toast and went back to bed. If memory serves she had to wait until 1:00 p.m. for her procedure. Eight hours is a long time without food for a baby. Luckily at a children’s hospital like ours, they have many things for children to keep them occupied – and subsequently NOT thinking about food.

Putting her under anesthesia is harder for the parents than the child for sure. I remember crying as I watched my little lady and her body go limp after the anesthesiologist put the mask over her face.

The procedure didn’t last long: 30 minutes to 1 hour maybe? Our gastroenterologist could tell from the pictures during the endoscopy that Emma likely had confirmed celiac disease. But we had to wait for the biopsy results to come back. The biopsy samples will be looked under a microscope and analyzed for damage.

We began the gluten-free diet then, even though the biopsy hadn’t come back because Emma was getting worse by the minute. Doctors recommend you NOT start the gluten free diet before the biopsy, because then it could skew the results. You wouldn’t want to inadvertently make what should have been a positive biopsy, negative.

If you can’t get your doctor to even order a blood test for celiac, think of it this way, propose it to your pediatrician this way — it’s a relatively inexpensive way to get you out of his/her hair. If he or she still won’t do it at your request, go somewhere else.

Good luck and I hope this helps you and your family go into a procedure with more information to make you more relaxed and comfortable as you go through what can be an emotionally difficult time.