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.

On Sale Now: The G Free Diet

Curious about Going Gluten-Free? Get Tested First!

Elisabeth Hasselbeck appeared on Good Morning America today to promote her new book The G Free Diet. At the GMA website you can see the segment, read an excerpt from her book, and find a link to the book's website, www.gfreediet.com.

I'm glad that Elisabeth is raising awareness of celiac disease, which is still grossly underdiagnosed, and it's good to see that her story might alert people diagnosed with IBS that they might actually have celiac disease—but I hope that people do not go on a gluten-free diet before getting tested for the condition. I try to avoid shouting on this blog, but here goes: GET TESTED FIRST!

As I'm sure Dr. Peter Green (Elisabeth's doctor and mine) would be glad to tell you, getting screened for celiac disease is a simple and relatively inexpensive process that should be done in coordination with an informed physician. The first step is to get a series of blood tests while gluten is still in your diet. You can find the list of the blood tests at the website of the Celiac Disease Center of Columbia University (CDCCU), where Dr. Green is the director as well as the founder. Based on the results of the tests, the physician may suggest proceeding with an endoscopic biopsy to look for gluten-related intestinal damage, which is the gold standard for a diagnosis.

Speaking of gold, I want to emphasize that the time when you're considering trying out a gluten-free diet is the golden moment for being screened and tested for celiac disease (which is, strictly speaking, not an allergy). Instead of going on the diet right away, make that appointment with your physician and discuss taking the blood tests. After the results come in, you can talk about the next move. (The biopsy also yields the best results while you're still consuming gluten.) After you get the test results, you can still choose to eliminate gluten from your diet, but at least you'll have a baseline that doctors can refer to. If your tests turn out to be positive, they can be useful in monitoring the success of your diet, getting family members tested as well, and even getting federal tax breaks for your expensive gluten-free food!

Want more info? Try the National Foundation for Celiac Awareness (NFCA), the Celiac Disease Foundation (CDF), the William K. Warren Medical Research Center for Celiac Disease (WCCD), the Celiac Disease Center at Beth Israel Deaconess Medical Center (CDCBI), the University of Maryland Center for Celiac Research (UMCCR), and Mayo Clinic.

Also, be aware that Dr. Green has co-written his own book, Celiac Disease: A Hidden Epidemic. Don't expect to read about Elisabeth in that book, but do expect to spend some time in the company of one of the world's experts on the subject.

Here you can see Elisabeth and Dr. Green on The View, back in March 2007.



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Thanks to Erin at the New York City Celiac Disease Meetup Group (NYCCDMG) for the lead.

MAYO CLINIC ANNOUNCES NEW DIAGNOSTIC ROUTINES

Mayo Clinic recently issued a communiqué announcing new standards and new tests for diagnosing celiac disease and monitoring treatment on a gluten-free diet. [PDF]

The guidelines and diagnostic algorithms described in the announcement can be extremely useful in helping doctors figure out whether patients have celiac disease. There is even a set of recommendations for diagnosing patients who are already on gluten-free diets. It's still advisable for patients to be on gluten-inclusive diets for a significant stretch leading up to the diagnostic period ("Serology may be falsely negative in patients who have already reduced the gluten in their diet," says the announcement), but it's good to have access to a backup strategy clearly outlined by Mayo Clinic (which does market its own tests).

The announcement states, "There are no typical celiac disease-specific symptoms; most people with the disease have general complaints such as intermittent diarrhea, abdominal pain, and bloating." But it does list numerous "signs and symptoms of celiac disease."

Gastrointestinal

Anorexia
Chronic diarrhea
Bloating
Vomiting
Constipation
Pale, foul-smelling stool
Lactose intolerance
Abdominal pain
Ulcers

Nongastrointestinal

Failure to thrive in infants
Anemia
Thyroid disorders
Chronic fatigue
Unexplained short stature
Depression
Irritability
Seizures/neuropathy
Recurrent fetal loss/infertility
Delayed menarche
Early menopause
Osteoporosis, osteopenia
Oral sores
Tooth discoloration or loss of enamel
Vitamin deficiencies
Myocarditis
Hyposplenism
Pulmonary hemosiderosis

Also of note:

"Up to 10% of untreated celiac disease patients may also have negative serology. When serology is uninformative or indeterminate, and there is substantial clinical doubt remaining, HLA [genetic] typing should be performed to help discriminate those patients for whom a diagnosis of celiac disease can be excluded."

"Mayo Medical Laboratories no longer recommends reticulin testing for the diagnosis of celiac disease. The sensitivity and specificity of this test for celiac disease are inferior to the other tests previously mentioned."

"Testing for IgA and IgG antibodies to unmodified gliadin proteins is no longer recommended because of the lower sensitivity and specificity of these tests for celiac disease....New tests for deamidated gliadin IgA and IgC antibodies have replaced the older gliadin antibody tests, which have been discontinued at Mayo Clinic. In a recent study conducted at Mayo Clinic, the sensitivity and specificity of deamidated gliadin antibodies for untreated, biopsy-proven celiac disease were comparable to tTG antibodies."

Thanks to Diane Hosek for the lead.

NEWS FROM ACROSS THE RIVER

This week New Jersey newspapers ran two articles having to do with services available in The Garden State.

Lorraine Ash's "Celiacs are what they eat" at DailyRecord.com (May 11, 2008) takes a look at the Morristown Celiac Disease Support Meetup Group (MCDSMG), which is run by registered dietitians Lynn Cicero of Morristown and Natalie Mazurets of Madison. The article briefly profiles the dietitians, visits a recent meetup at Whole Foods with Gluten-Free Baking Classics author Annalise Roberts of Mahwah, and describes how the meetup group helps to educate attendees, noting that "Meetup members learn about the 200 symptoms that can signal Celiac disease -- from depression to chronic fatigue, belching to diarrhea, headaches to infertility -- and how the wide span can lead to misdiagnoses such as rheumatoid arthritis, osteoarthritis, fibromyalgia, depression, multiple sclerosis and more."

But before going gluten-free, a person should get tested first! That's one of the messages in Meg Nugent's article "Before going gluten-free, make sure you need to" in The Star-Ledger (May 13, 2008).

Sample excerpts from the article, which revolves around the opening of the Kogan Celiac Center (KCC) in Livingston, New Jersey:

Shortly after the Kogan Celiac Center opened its doors last month, the facility's clinical coordinator created a slogan that speaks to this warning:

"Stop: Before you cut back, test for celiac!"


Celiac disease affects more than 3 million people in the United States but it remains a vastly under-diagnosed condition -- about 97 percent of Americans with celiac disease don't know they have it, according to the Celiac Disease Foundation.


[Kogan coordinator and dietitian] Margaret Masiello explained that an undiagnosed celiac who tries a gluten-free diet will only mask the existence of definite markers for the disease, including the "characteristic inflammatory process" of the small intestine and higher than normal levels of certain antibodies that are found in people with celiac disease. If those markers are concealed, then any testing that is done will have inaccurate results.


"The gold standard for testing for celiac disease is the combination of blood work that shows the antibodies and a positive biopsy that shows damage to the small intestine," said Masiello.

Let's say you suspect you have celiac disease and want to get tested but you've been eating gluten-free for a while.

"They'll have to eat gluten for four weeks (before testing can be done). That's the time believed to be needed to start those antibodies up again," Masiello said.

WHAT YOU NEED TO KNOW ABOUT CELIAC DISEASE AND THE GLUTEN-FREE DIET

Have you ever been to a medical panel discussion about celiac disease? Now, free on YouTube, you can see a comprehensive seminar on the basics of celiac disease and the gluten-free diet offered by the William K. Warren Medical Research Center for Celiac Disease at the University of California, San Diego.

Originally aired on November 29, 2007 by University of California Television (UCTV), the panel features director Martin Kagnoff ("What is Celiac Disease?"), gastroenterologist Gregory S. Harmon ("Do You Have Celiac Disease? Understanding Testing in Celiac Disease"), and nutritionist Susan J. Algert ("Mastering the 8 Principles of the Gluten-Free Diet"), plus a Q&A session.

One point that comes up in the program: Of the estimated 3-4 million people with celiac disease in the United States, only 40,000 have been diagnosed so far! Elsewhere, it's interesting to see how much faith Dr. Harmon has in the tTG for diagnostic testing, but I suspect the full panel of blood tests might still be worth giving just to get a good baseline and overview, especially in light of persistent questions regarding non-celiac gluten sensitivity. Dr. Harmon also mentions chronic borderline anemia as a red flag that can be investigated via tests for ferritin. Regarding the hot subject of whether one would take a pill (or just adhere to the diet), Dr. Kagnoff says that many gluten-free Netherlanders say they're very happy with the diet and wouldn't want to switch to a pill, though younger people and those new to the diet seem more enthusiastic about such medication.

Anyway, this is a very good and clear presentation. Instead of being broken up into several portions, it's offered in one big serving that's about as long as a feature film, so get out the popcorn and M&Ms and make yourself nice and cozy to watch it if you want to know what you need to know. After all, seeing the presentation via YouTube is a helluva lot cheaper than going back in time to see it live in San Diego! Plus, in this format, you have the power to pause the lectures to make sure you don't miss anything for whatever reasons.



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GOT CELIAC? STILL??

Most Americans with celiac sprue have not yet been diagnosed. They're out there among us—possibly experiencing any number or combination of symptoms such as fatigue, anemia, heartburn, osteoporosis, skin conditions, and gastrointestinal problems—perhaps not even suspecting that their health could improve dramatically on a gluten-free diet.

The good news is that, the more that people are aware of the condition, the more likely doctors will be to suspect it, test for it, and treat it.

Also out there is a subset of people who have been diagnosed and successfully put on a gluten-free diet but later told by a physician that they could then eat gluten safely. It seems that this was a trend among doctors who mistakenly thought that celiac sprue was an "infant disease" that permanently subsided after the patient went on a gluten-free diet. Regardless of how healthy they feel today, those misinformed people should consult with an informed physician who can investigate the validity of the original diagnosis, because celiac sprue remains a lifetime condition, whether or not symptoms are apparent.

I've put together a nifty video on the subject—with Bob Dylan's help! Check it out—if you experience technical difficulties, just try again later.

THE VIEW SPREADS THE WORD!

Today's much-anticipated View segment on celiac disease could mean a major improvement in the lives of many Americans. Thanks to the speedy work of the The View and the National Foundation for Celiac Awareness (NFCA), most of the coverage is already online via YouTube! (There's a little bit missing--I'll cover it in this post.)


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This type of coverage is important and valuable because correctly diagnosing and treating celiac disease is a major public health issue in the United States. "As many as 3 million people in the United States have celiac disease but only about a tenth have been diagnosed, wrote Susan J. Landers in this American Medical News, referring to the findings of an independent panel of experts convened by the National Institutes of Health.

So how could more than 2.5 million Americans be unaware that they have celiac disease? Some of them were diagnosed with celiac disease years ago but incorrectly deemed "cured." (They might have been called "banana babies" because of the medical diet they were on.) Others may have been misdiagnosed or incompletely diagnosed by doctors who failed to test them for celiac disease, mistakenly thinking it too rare to consider. Testing for celiac disease with an informed physician is a relatively simple process, but because doctors underestimate the condition, it typically takes many years for patients to get correct celiac diagnoses after they first showed worrisome symptoms.

That was the case for View co-host Elisabeth Hasselbeck (left) before she got her diagnosis and then "came out" on The View last January, when the show's co-hosts spent about three minutes chatting about the condition. Today The View devoted more than seven minutes to the subject in its final segments, calling upon Elisabeth's doctor (and mine) Peter Green and NFCA founder and Executive Director Alice Bast to add their perspectives. Also participating (in the absence of Barbara Walters): special guest co-host Susie Essman, who says that her mother has celiac disease and who may or may not have celiac disease herself. (On The View, Essman said that she doesn't know whether she has it, but in March 2003 Alex Witchel of The New York Times once quoted her as saying "I was diagnosed last year with celiac disease. Yeah, you can say it, I can be the poster child for it.")

The intro to the show promised "Elisabeth's revealing her battle with celiac disease...finding out why it's easily misdiagnosed...and how it can lead to everything from infertility to cancer."

As you can see in the video, Dr. Green offered a mini-presentation during which he noted that the manifestations of untreated celiac disease can be very varied. The ones mentioned on this particular episode included:

bloating, gas, or adominal pain (may be misdiagnosed as IBD)
abnormal stool
irritability or behavior changes
fatigue [a very common symptom--Ed.]
itchy skin rash
infertility
miscarriage
depression
intestinal cancer

I emphasize that the above are just some of the manifestations, because there are others--such as anemia and osteoporosis (notably among men), thyroid disease, and type 1 diabetes--that are quite common among people with celiac disease. Bast encouraged people wondering about themselves to take the Do I Have Celiac? diagnostic quiz at the NFCA website.

Dr. Green also showed how the gluten from wheat, barley, and rye causes atrophy of intestinal villi in people with celiac disease and explained that going on a lifelong gluten-free diet leads to healing for those people: "You have to be gluten-free your entire life. It's a lifelong diagnosis. If you get diagnosed in childhood or [as] an adult, it's for the rest of your life. Because as soon as you go back to gluten, you go back in that direction, flattening your villi." Or, as Bast put it: "A change in diet can change your life."

The genetic component of celiac disease also came up. Because close relatives of people with celiac disease are more likely to have the condition, it is a good idea for first- and second-degree relatives to be tested for it too. The standard diagnosis involves having blood samples taken while one is still eating gluten, then possibly following up with an upper endoscopy. Genetic testing can be useful in certain diagnostic situations, but there is currently no genetic test that, alone, will tell you that definitely have celiac disease.

There was a talk about foods such as cornbread and soy sauce containing the forbidden gluten--but just about anything (including cornbread and soy sauce, which is why clear labeling is so valuable) can be all right for the gluten-free diet depending on how the food is made. For example, the subject of a KitKat equivalent came up. I think Elisabeth cited Glutino Chocolate Wafers (and--I think mistakenly--said they were sugar-free). The closest KitKat equivalent that I've found is Glutano's Break Bar. (She said Glutino, I say Glutano.)

The show ended with some closing remarks not in the above clip. Rosie said, "Elisabeth, I think that was great that you talked about that 'cause, you know, it's been, you've had it for a while, right?"

Elisabeth said, "I have. And it took me so long to find out that I did. If I can just help someone not have six years of just hell before they find out....Especially kids, you know, they need more labeling on foods...and I'm going to try to do anything I can to get that fixed...."

Then there was this exchange between Behar and Essman (who had mentioned being on thyroid medication):

BEHAR (conversationally) You don't have it....

ESSMAN I probably do. I am doctor-phobic so I don't go get diagnosed....You know what? I eat the stuff and I feel bad and then I don't eat wheat and I feel good. So hello?

BEHAR It sounds like it's a little more complicated. It can cause worse diseases. You need to be diagnosed.

ESSMAN And my mother has it. And it's also connected to thyroid....

BEHAR Duh!

ESSMAN You know, I treat myself as if I do, and I don't eat the wheat.

That kind of exchange should sound pretty familiar to people in celiac world. My advice: If you think you might have it, consult with an informed doctor about getting tested. It typically all begins with a blood test while you're not on the gluten-free diet.

You know what I think would be interesting? Offering screening to anyone involved with The View and finding out what the results are.

In the meantime, here's the latest in the feud between Rosie and Donald Trump--this was also on today's episode.

MEET ALICE BAST

Alice Bast is the founder and Executive Director of the National Foundation for Celiac Awareness (NFCA), which has become very visible in New York City in recent months. Just last weekend, the NFCA hosted the Winter 2006 Gluten-Free Cooking Spree in Chelsea and then became the honoree at a special gluten-free dinner at Centrico hosted by Redbridge Beer, attended by gluten-free celebs Heidi Collins and Elisabeth Hasselbeck, and blogged about beautifully by CeliacChick Kelly.

Like many of us, Alice only found out she had celiac disease after a long, drawn-out period involving many frustrating visits to doctors. As Alice herself puts it, she suffered diarrhea, fatigue, bloating, a general malaise, and the trauma of a full-term stillbirth as well as several early miscarriages. Her teeth began to deteriorate and her sister-in-law wondered if she had anorexia, though doctors often observed that she looked fine.

An interesting aspect of celiac disease is that, while the above-mentioned symptoms are common, the condition can be accompanied by symptoms that are markedly different. Or no symptoms might be noticed at all. That is why testing by a well-informed doctor can be crucial. Here's the NFCA on diagnosing celiac disease.

And here's Alice on Moms on the Move with Linda Swain.



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MEDSCAPE UPDATE

Two new articles on Medscape deal with celiac disease.

"Coeliac Disease: Relationship to Endocrine Autoimmunity" is a case study of a man who was treated successfully for Addison's disease and type 1 diabetes, but received a diagnosis of celiac disease after showing symptoms of fatigue and iron deficiency anemia about 15 years into his treatment for the other conditions.

An accompanying discussion identifies common celiac symptoms as malabsorption (60%), lethargy (50%), and anemia (12-22%) but notes that physical examination is often normal. It lists associated disorders as fatty liver disease, dermatitis herpetiformis, epilepsy, neuropathy, male and female infertility, Addison's disease, and type 1 diabetes. It also observes that cigarette smoking reduced the risk of celiac disease by 80%--though I'd recommend consulting with a physician before taking up smoking as a preventative therapy. The article appears in The British Journal of Diabetes and Vascular Disease (Volume 6, Number 6, 2006).

"Advances in Celiac Disease" is a multi-part summary of "recent critical research in celiac disease." I could actually use a summary of the summary, but here are three of the points that stood out for me:

Celiac disease screening among women of reproductive age could yield significant health benefits.

Primary care doctors are increasingly involved in identifying celiac disease patients.

A Finnish and Hungarian group is developing a point-of-care testing kit that would yield results within 30 minutes.

This report appears in Current Opinion in Gastroenterology (Volume 23, Number 2, 2007).

The former study put the frequency of celiac disease at 1 in 200; the latter as possibly as high as 1 in 100.