Clan Thompson's Celiac Site

Q & A

QUESTION: I am the mother of 7 children. My 10 year old son was first diagnosed with CD through a small intestine biopsy. The other 6 children were given blood test. 5 of the 6 test came back with high IgG levels. Our GI told me to put them all on the GF diet because he believed they all had it. My 11 year old son, who has Aspergers and many other problems, tested negative with his blood work but so did my 10 year old who's biopsy was positive. I tested negative also. We have been on a Gluten Free Diet for several months and we all can tell a big difference. However, I don't feel our medical needs are being address and I was hoping you could help me with this. Our GI does not want to do any repeat test. He has not tried to find out if we are lacking any vitamins or minerals in our diet and the only plan he has to look at us every 4 months, for what I don't know. Here is the question: What test or maintenance should a celiac child have?

DR. RUDERT: I was absolutely amazed to receive your letter. Obviously Celiac Disease may run in families although I have never heard of a mom with seven Celiac children! Please be sure that the children's father is tested.

It is always preferable to have a small bowel biopsy prior to diagnosing Celiac Disease. Serologic testing may lead one to strongly expect the diagnosis; however, all the experts agree that blood testing is not to the point where it can replace a small bowel biopsy.

I am limited in training to adult gastroenterology; however, I do see children as young as fourteen. In fact, recently I saw a Celiac mom whose son may have Aspergers (his blood and small bowel biopsy were negative). As you indicate from your letter one can certainly have a positive biopsy with negative blood testing. It is estimated that 20% of individuals with Celiac may be seronegative. You mentioned in your letter that your blood test was negative.

Fortunately, you are all doing better on a gluten-free diet. I generally screen all patients for vitamin B12 and folic acid deficiency (with B12 levels and rbc folate levels) in addition to routine labs screening for anemia, diabetes, liver disease and coagulation problems if indicated. I also routinely obtain serum IgA levels. Ten to Twenty percent of patients may be IgA deficient, which may explain why some of the Celiac testing may be "negative" (antiagliadin IgA and antiendomysial antibody ab and ttg IgA are dependent on appropriate IgA levels to be elevated). Also, IgA deficiency may predispose individuals to recurrent infections such as giardiasis which is a microscopic intestinal parasite.

I am flattered that you would think to bring everyone to Atlanta; however, first I would recommend a new book that has just been released titled, Kids with Celiac Disease by Danna Korn. Mrs. Korn has a Celiac child and was the founder of a support group she named "Raising Our Celiac Kids" (R.O.C.K.). You need to have everyone on gluten-free multi-vitamins and Twin Labs makes an excellent extremely complete chewable vitamin for children. I would also recommend subscribing to Sully's Living Without magazine at www.livingwithout.com. Their address is: P. O. Box 132, Clarendon Hills, IL 60514-0132 or call (630) 415-3378.

I also learn a lot from the publication Gluten-Free Living and subscriptions may be ordered by contacting them at their address: Gluten-Free Living, P. O. Box 105, Hastings-on-Hudson, N.Y. 10706. I encourage my patients to join as many of the support groups as possible and they are listed below:

Celiac Disease Foundation 13251Ventura
Blvd., Suite 1 Studio City, CA 91604 Phone:
818-990-2354 Website:
www.celiac.org

Celiac Sprue Association/ United States
of America (CSA/USA) P. O. Box 31700 Omaha,
NE 68131 Phone: 402-558-0600 Website:
www.csaceliacs.org

Gluten Intolerance Group of North America
15110 10th Ave., S.W. Seattle, WA 98166
Phone: 206-246-6652

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