Thursday, February 05, 2009

Autism and Gluten Sensitivity

Dietitian Tricia Thompson, who specializes in the gluten-free diet, recently posted an interview with autism expert Jennifer Elder about using a gluten-free casein-free (GFCF) diet to treat autism. I was surprised that there was nothing in the discussion about the potential benefits of screening autistic children for celiac disease prior to putting them on the diet.

But perhaps I shouldn't have been surprised. I've seen lots of coverage about treating autism with a GFCF diet, but I don't recall a single occasion when the coverage suggests testing for celiac disease or other gluten reactions prior to putting a child on the diet.

Sometimes it seems that autism and celiac disease exist in parallel worlds, with attention-getting voices like Pamela Anderson's in GFCF World but not Celiac World. But that shouldn't be not the case.

Testing for celiac disease pre-diet makes sense. The current odds of having celiac disease in the U.S. are currently estimated at around 1:100 or 1:133, with most cases still going undetected. So, at the very least, it seems likely that any child tested for celiac disease has about a 1:133 chance of testing positive.

Doctors should seriously consider screening with a full panel of blood tests for gluten sensitivity—not just for the autoimmune antibodies but for the antigliadin antibodies too. Even though the autoimmune antibodies seem very reliable when testing adults, they are not necessarily as reliable for young children. Furthermore, it is possible that a serious neurological reaction can be associated with antigliadin antibodies but not autoimmune antibodies, as is the case with gluten ataxia.

Patients who test positive for gluten sensitivity in a full celiac panel (only valid when the patient is not on a gluten-free diet) can then be monitored for compliance with the diet. If they follow the diet, subsequent results should be lower; if they fall off the diet secretly or accidentally, the celiac panel can provide evidence. But if the patient goes gluten-free without the testing, there will be no pre-diet baseline test results.

I raised most of these points with Tricia Thompson, who agreed that "all children with autism should be tested for celiac disease before being put on a gluten-free diet." I hope that this message gets the attention from the autism community that I think it deserves.


Karen Fisher said...

Hey - Have you tried - Yum!

Anonymous said...

Thank you for this particular blog. You are dead on! My son is 9 and last summer we had him tested for celiac prior to embarking on a GF diet for autism spectrum disorder. Dr Tim Buie, at Mass General, specializes in GI issues for kids on the spectrum, and he goes around the country at conferences begging parents of kids on the spectrum to test for celiac first!! once you go on the diet, the antibodies disappear and you can't detect celiac anymore, even if the child has it. Well, my son came back positive for celiac and lactose intolerance. I have Sjogrens, so it makes sense that he could have a related autoimmune disease. As you know, celiac is for life, and most kids on the spectrum eventually go off the GFCF diet after a few years, so we really needed to know this information before he went on the diet. He has improved tremendously on the diet. He talks much better now, and is much more "in the world" asking questions like he used to be on another planet. So I urge parents to try the diet but first, get your child tested for celiac!!!

David Marc Fischer said...

Thank you for your lovely note--and, um, remember: First degree relatives should get tested, too!

Thomas Dzomba said...


Thanks for commenting on my post about the ELLE article and linking to your post. I guess because we view the GFCF diet as a lifestyle, and something that you would never stop, that it never occurred to me to think about ASD children eventually going off the diet as adults.


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