Study: Celiac Disease and Autism

The Focus Might Surprise You

A bunch of studies related to autism, gluten, and/or celiac disease seem to be in the works, but so far it appears that not many have made it very far into the public eye.

Now the July 6 online edition of Pediatrics includes an international study that links autism with celiac disease, but perhaps not in a way that many people might have anticipated.

The study found, in part, that the children of mothers with celiac disease were more than three times more at risk for autism, reports HealthDay reporter Steven Reinberg,

So what does this mean in terms of treating autism with a gluten-free diet? The basic GFNYC stance remains the same: Before putting a child on a gluten-free diet, simply have the child tested for celiac disease by an informed pediatrician who understands that, depending on the age of the child, the serum test criteria for child diagnosis may be slightly different than those for adult diagnosis. (For infants and anyone else with neurological disorders, the anti-tissue antibodies may not be as important as the anti-gliadin antibodies.) Should the results be positive and the child go on a gluten-free diet, much improvement might result—and compliance with the diet can be monitored with using the original blood tests as a baseline.

To complement this testing, mothers (and fathers) might want to have themselves tested too.

The estimated prevalance of celiac disease in the general population is about 1:133—and possibly increasing, although most people remain undiagnosed. (Autism is slightly rarer in the United States, at about 1:150.) Among children with celiac-related developmental problems including failure to thrive, short stature, and dental enamel and tooth growth issues, it might be safe to say that they may be even more likely candidatest to be tested for celiac disease.

Certainly first- and second-degree relatives of people with celiac disease are much more likely to have the condition themselves. (The odds are about 1:22 and 1:39, respectively.)

More data can be expected over the coming months. But for now, if you're ready to put a child on a gluten-free diet, seize the opportunity to test for celiac disease first. Once a patient is gluten-free, testing for celiac disease and monitoring for dietary compliance becomes more difficult.

And, if your child has been diagnosed with autism, consider getting tested for celiac disease yourself. It could help to clarify some significant family health issues.

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.

MYSTERY DIAGNOSIS

Okay, I admit that this episode of Mystery Diagnosis is probably not much of a mystery here—especially if you recall the Murphy family. Still, there are some fascinating twists and turns in this tale, which offers lessons about developmental problems as well as family testing. Plus, there's an appearance from Dr. Peter Green and a reference to the Westchester Celiac Sprue Support Group (WCSSG).

PART ONE (6:05)




PART TWO (8:00)

"THE CHALLENGE OF GIVING UP GLUTEN"

Many recent articles about being gluten-free revolve around the diet being a medical necessity; other recent articles treat the diet as a fad. Today's Newsday picked up a Chicago Tribune article by Janet Helm entitled "The challenge of giving up gluten."—a well-sourced item that addresses both the medical issues and the possible trendiness related to the diet.

Some highlights:

Most definitely, people with celiac disease need to avoid gluten. Otherwise, this autoimmune disorder can damage the small intestine and interfere with the absorption of nutrients. For celiac sufferers, a gluten-free diet is far from a fad - it is the only treatment.

What appears less clear is whether gluten can be blamed for other problems such as autism. Carol Fenster has been gluten-free for 20 years even though she does not have celiac disease. She's part of a growing group who say they simply feel better avoiding gluten.


Experts say that the growing attention on gluten is a mixed blessing. On one hand, it may encourage more people to get tested for celiac - which still remains undiagnosed in about 97 percent of the people who have it in this country. A typical diagnosis often takes 10 years because the symptoms are mistaken for other conditions. But, ironically, the current fervor over gluten may be making a proper diagnosis even trickier.

Starting a gluten-free diet before being tested for celiac may cause the gut to heal temporarily and an accurate diagnosis will be missed, said Dr. Joseph A. Murray, a celiac disease specialist at the Mayo Clinic in Rochester, Minn.

"If you're concerned about celiac, you should be tested before treating yourself," he said.

Self-diagnosis is rampant, probably due to the increased awareness of the disease. People are more likely to know someone with celiac now, and they relate to the diverse and often vague symptoms associated with the disease, Murray said.


If celiac is ruled out, Murray said there is little or no evidence to support a connection between gluten and other ailments, including autism. Even so, he said there is nothing wrong with cutting out gluten as long as your diet is nutritionally complete.

Lately I've been wondering about a possible contributor to the trendiness of gluten-free diets that Helm's article doesn't mention. With the food industry's bullishness about gluten-free products, it seems that more and more products show up with "gluten-free" labels but no explanation that the labels are pertinent for people on medical diets. Consumers who see the labels possibly associate the labels as something generally positive (like "vitamin packed") rather than of most relevance to people with celiac disease and/or wheat allergies. Perhaps increased awareness of celiac disease causes people to go on the diet, but perhaps increased awareness of the "gluten-free" label—without increased awareness of celiac disease—might come into play, too.

Just musing, is all. I'd be interested in seeing studies of the phenomena discussed in the article. And I'm looking forward to seeing studies about possible relations between gluten and symptoms associated with autism. I think there are some coming.

GLUTEN AND AUTISM: UNDER INVESTIGATION

A big health story this week relates to new reports of the American Academy of Pediatrics (AAP) calling for vigilance regarding signs of autism. "What's brand-new is that we're asking pediatricians to screen all children for autism at the 18-month and 24-month well-baby visits—not just children with speech delays and children of parents who have a concern. We're also telling pediatricians to ask parents about social and language deficits that may be present in very young children," Chris Plauché Johnson told U.S. News & World Report.

The AAP press release refers to the use of gluten-free diets to help children with autism spectrum disorders (ASDs):

Although use of the gluten-free/casein-free diet for children with ASDs is popular, there is little evidence to support or refute this intervention. More studies are in progress, and it is anticipated that these studies will provide substantially more useful information regarding the efficacy of the gluten-free/casein-free diet.

So what's to be done while the world awaits the result of the studies?

Well, I see some benefit in pediatricians and parents being similarly vigilant for celiac disease and other forms of gluten intolerance. Some reasoning:

The frequency of autism is about 1:150; the frequency of celiac disease is higher, about 1:133.

Blood screening for celiac disease is a relatively safe procedure that should not jeopardize a child's health (though a pediatrician should make sure that the blood tests are evaluated correctly).

Even if tests for celiac disease are negative in children suspected of having autism, there should be some consideration that there could be a neurological gluten intolerance that does not fully register in tests for celiac disease. A recognized example of a neurological gluten intolerance (not to be confused with celiac disease or autism) would be gluten ataxia.