The Patient Celiac

I have four children, who are all at high risk for developing Celiac Disease. I was diagnosed with Celiac Disease 3 years ago, but have had symptoms since early childhood. My husband does not have Celiac Disease, but he carries one of the two main Celiac genes, DQ2. Due to my children’s risk, I have had their pediatrician screen them when they turn 4 years old with a Celiac panel (blood test with Celiac antibodies). My third child, Gabby, just turned 4 so she will have her first Celiac panel at her well-child visit in a few weeks, along with all of her four year old immunizations. I think I’ll try to get my husband to take her!

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Since starting this page I have had a lot of people ask me if their children should be screened for Celiac Disease. The latest, evidence-based, recommendations for screening are as follows:

Children should be screened for Celiac Diease if they have any of the following symptoms:

• short or underweight for age, especially if growth has slowed down
  
• diarrhea that lasts for more than a few weeks
  
• recurring constipation, abdominal pain, and/or vomiting
  
• tooth problems called dental enamel defects
  
• delayed puberty
  
• iron deficiency anemia that does not respond to treatment with supplements
  

“High risk” children who belong to the following groups should also be screened (even if they have none of the above symptoms):

• 1st degree relative (child or sibling) of someone with Celiac Disease
  
• Type 1 diabetes
  
• Down syndrome
  
• Turner syndrome
  
• Selective IgA deficiency
  
• Williams syndrome
  
• Autoimmune thyroid disease
  

The first step in screening is to have Celiac antibodies measured in the blood. For small children, especially those under the age of 2, it is important for the antibody tests to include the deamidated gliadin peptide, or DGP, antibody. While most Celiac panels include TTG IgA and IgG antibodies and endomysial IgA and IgG antibodies, not all include the DGP antibodies.

The second step in testing, if Celiac antibodies are abnormal, and/or there are enough symptoms that Celiac Disease is suspected, is to have an endoscopy and biopsy. During the endoscopy a flexible tube with a camera on the end is inserted into the mouth, down the esophagus, and into the small intestine. Small pieces of the small intestine (biopsies) are obtained, which are evaluated by pathologists. In Celiac Disease, the small fingerlike projections (villi) of the walls of the small intestine are flat, or blunted, which impairs the ability of the body to absorb essentials vitamins and nutrients.

In the absence of symptoms, we are having our kids have Celiac antibody tests every two years or so starting at the age of 4. If any of them develop overt symptoms of Celiac Disease and/or have abnormal antibodies, we will go the route of having an endoscopy and biopsy done to be able to have a firm diagnosis of Celiac Disease. Although we keep a strictly gluten free household, for my sake, as I am very sensitive to any gluten cross-contamination, we do allow our older kids to eat gluten outside of our home. This enables them to have a small “dose” of gluten in their systems on a regular basis. We feel this is important because it enables us to monitor them for symptoms when they do eat gluten and will enable their Celiac blood tests to be as accurate as possible. One of the most common causes of falsely negative Celiac antibody tests is that patients are already gluten free when their tests are performed.

For more information on Celiac Disease testing I recommend that you check out the Open Original Shared Links and the Open Original Shared Link websites.

Reference: Patient information: Celiac disease in children (Beyond the Basics). Authors Ivor D Hill, MD and Anne Roland Lee, MSEd, RD, LD; Section Editor William J Klish, MD; Deputy Editor Alison G Hoppin, MD. Literature review current through: May 2013.