Weight Should Not Determine Whether to Test for Celiac Disease

A father emailed me today, worried about his son.  The father says he believes his son may have celiac disease, but apparently his doctor won’t test for it because the boy is overweight.  My initial response to him was that you don’t have to be skinny or underweight to have celiac disease, but I needed time to research.  Later this evening I was able to get back to him with some firm information.  So I thought I would share it with you.

Debunking some Myths

One of the things we all as advocates for people with celiac disease should do is work to debunk some myths that seem to go along with this disease for many people in the medical community:

• The only symptoms for celiac disease are vomiting, diarrhea and weight loss/underweight
• If you have GI symptoms, it must be IBS (already covered in earlier post)
• Try the gluten-free diet before the biopsy.  No big deal.
• If the blood test is negative, it’s not worth doing a biopsy

So I’m only going to tackle the first one in this post.  I will hit on the last two in upcoming posts.

Must be underweight to possibly have celiac disease

The father that emailed me didn’t say much in his note, but he didn’t have to.  I could tell he was done and needed answers for his child.  That’s when I found a few interesting articles any doctor should know about when dealing with celiac disease.  According to Nancy Lapid’s article in About.com,

“…one study published in the Archives of Pediatric and Adolescent Medicine in 2008, 11.2% of children diagnosed with celiac disease were overweight. In another study in the American Journal of Gastroenterology published in 2001, 39% of adults with celiac disease were overweight when they were diagnosed.” — Nancy Lapid

Celiac.com did more on the AJG article in 2006, highlighting the troubles overweight patients have with getting tested for celiac disease.

“Unfortunately many medical doctors still won’t even consider testing overweight patients for celiac disease because they erroneously believe that the disease can only occur in individuals who are underweight. This line of reasoning is outdated and incorrect, and is also very dangerous to those who happen to have celiac disease are are overweight-which is now known to be quite common.”

So what do you do if you still can’t get anyone’s attention?  Go see another doctor.

Here are some ideas:  Can you go straight to a gastroenterologist? My husband and I often wonder why we spent so much time hoping our GP would figure out what was wrong with our daughter.  Why didn’t we go straight to the GI?  Maybe it’s because we needed a referral or something.  But I honestly think we just didn’t think about it.

Another option, check with your local celiac support group.  Maybe they have a good adult or pediatric specialist they recommend who is more open and knowledgeable to the celiac test.

At any rate, please don’t let your weight, or the weight of your child, make you “wait” any longer!  Do what you need to do to either get diagnosed with celiac or get it crossed off your list so you can move on and find out what is ailing you.