The Prevalence Rate is Up; It’s More Common Than Thought
When you hear that the prevalence rate for a disease or disability is rising, and that said disease or disability is more common than thought, do you think of……… autism? (Recall the figure of 1 in 150 for the prevalence rate of autism that was reported by the CDC in February.)
An article in the May 8th New York Times notes a prevalence rate of 1 in 100 for a disease once thought to occur in every 1 in 3000 persons in North America—-the disease being celiac disease, “an autoimmune disorder that damages the small intestine and interferes with absorption of nutrients” and specifically with gluten, the protein in wheat. For at least the past ten years, the gluten-free casein-free (casein being the protein in milk) has been heralded as a biomedical treatment for autism. (And parent Karyn Seroussi wrote about her son’s “recovery” from autism in her 2000 book, Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research & Recovery.) My son has been on such a special diet for the past eight years, though we have recently begun to see what happens if he eats bread made from wheat (he seems—seems; keep in mind that we are looking for a change or other effect) more hyper, but he does calm back down within a short span of time.
The New York Times article specifically notes that gluten has become a “popular dietary villain” and that more people are removing it from their diets, even if diagnostic tests do not show that they have celiac disease.
Warnings of gluten’s evils are common on alternative medicine Web sites and message boards.
“A lot of alternative practitioners like chiropractors have picked up on it and are waving around magic silver balls, crystals and such, telling people they have gluten intolerance,” said Dr. Don W. Powell, a gastroenterologist at the University of Texas Medical Branch at Galveston.
Sloane Miller, a 35-year-old freelance editor in New York, went on a gluten-free diet six months ago on the advice of her acupuncturist, even though a blood test and a biopsy indicated that she did not have celiac disease. Long plagued with gastrointestinal distress and believing that she might have an undetectable sensitivity to gluten, Ms. Miller said giving it up was “worth a try.”
Dr. Joseph A. Murray, a gastroenterologist at the Mayo Clinic in Rochester, Minn., who specializes in diagnosing and treating celiac disease, says such advice may be misguided. “There’s this ‘go blame gluten’ thing going on,” he said. “It’s difficult to sort out science from the belief.”
It is the case that going gluten-free is somewhat easier than it was eight years ago and I had to read, read, and read the labels of numerous food product to see if even trace elements of gluten could be found. Now our local supermarket has an entire section stocked with gluten-free foods (though, in truth, I did not think the diet too hard to put Charlie on—-he has always eaten a lot of rice and non-wheat foods in a “vaguely Asian” diet). And the increasing availability of so many gluten-free food choices can itself be seen as a sign not of more people having celiac disease, and hence asking for corn pasta, tapioca flour, Glutano wafers, etc., but as a sign of increasing awareness about celiac disease.
It can be difficult to “sort out science from belief.”
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POSTED IN: Epidemic, Food and Diet, Health
4 opinions for The Prevalence Rate is Up; It’s More Common Than Thought
Niksmom
May 8, 2007 at 9:33 am
Whether one attributes perceived change in a child’s condition due to science or belief, there appears to be growing interest in exploring the possibility of “leaky gut” or “intestinal permeability” by mainstream medicine. I’ve recently read some articles (to which, of course, I cannot find the links when I need ‘em!) which seem to indicate that there may be a genetic predisposition in some families toward this “leaky gut” which results in decreased immunity in the mucosa. The study cited focused mostly on families with high incidence of Crohn’s.
The theory, as I vaguely understand it, is that the intestinal immunities are sub-normal and may create the right environment for areas of increased permeability by certain types of proteins which do not normally get into the bloodstream.
I do know that we have seen a marked change in Nik since we put him on a GF/CF diet in the psat few months. Challenging since he is tube-dependednt and nearly all formulas use some form of dairy-based protein in them. We’ve recently switched to a food-based formula which has far less dairy-based protein in it; we DO see a difference with Nik which we cannot attribute to anything else as he is not (yet) getting any sort of behavior-based therapy such as ABA.
That said, do I think it’s the root-cause of his (or anyone’s)autism? NO. I think he is a little boy with lots going on his little body —the inevitable result of being born 3 months early and weighing barely more than a pound, of having absolutely every system in his body be underdeveloped at birth and forced into functioning independently before it was ready.
Lisa/Jedi
May 8, 2007 at 9:50 am
Interesting… my chiropracter recommended that I be tested for celiac disease last year, since I have longstanding GI problems (including IBS). I tested negative, which was a relief (I need more complications like I need the proverbial hole in the head). Brendan’s only food allergy is lactose related- even devil sugar doesn’t seem to bother him. :) What I find particularly interesting is that I decided to keep his diet wheat-free for the first year of his life, since the leaky-gut idea had just hit the popular media & I was concerned about pre-disposing him to any problems. It was really easy to do when he was little- we gave him rice-based cereals & pasta (when he started eating solid foods) & avoided wheat-based cereals & crackers until he was over a year old. He did end up with chronic GI pain that was due to lactose intolerance & which we self-diagnosed (his pediatrician was no help at all). Otherwise, he has no food (or drug) allergies at all. Was it due to keeping him wheat-free at first? We’ll never know… It would be very helpful, though, for pediatricians to get themselves up to spped with current research in this area, so parents have good information rather than media-driven hype to base their diet decisions on.
Julie
May 8, 2007 at 10:57 am
Rebekah as well has no allergies other than an intolerance to dairy. I do find that if she has dairy she does not communicate as well and tends to revert to her screaming rather than using words. I contribute this to that fact that she does not feel well and so it is too much for her to concentrate to try to use words. I do not believe her dairy issues caused the autism or the other way around. I do think that she does not communicate well when there are not optimal conditions and that feeling sick is one of those times. I would love to see pediatricians more informed in general about developmental and diatery issues. Maybe a system where a child is seen by a nutritionist when there are food issues would be helpful. My ped is also specialized in developmental disoedrs and it still took until she was almost 5 for him to sent us to the developmental center for a referal, mainly I think because I was not too overwhelmed due to my previous experience with behaviorally challenged children. When a parent says that they believe there is a problem I would love for the medical community to say okay lets check it out.
Kristina Chew, PhD
May 15, 2007 at 11:12 am
This May 10th NPR report notes that the prevalence rate for celiac disease is less than 1% of the US population. Also included is information on how to read a food label to see if a product contains traces of gluten (the protein found in wheat).
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