Beyond Anecdotal Evidence: Clinical Trial of the GFCF Diet
August 7, 2008 by Kristina Chew, PhD
Filed under Health
We started our son Charlie on the gluten-free casein-free diet over nine years ago, when he was two years old. After several years of faithfully adhering to it, with the rationalization that “since Charlie can’t say how he feels when eats wheat and dairy, we’d best just keep him off them,” wheat (not dairy—-milk products remain to be avoided) is slowly reappearing in Charlie’s diet and it’s been no big deal. Especially after Jenny McCarthy made claims of seemingly miraculous improvements for her son Evan on the diet, people have been wondering, and debating, its effectiveness. The University of Texas Health Science Center at Houston has begun one of the first double-blind, clinical studies to determine whether the gluten-free casein-free diet indeed plays “a role in autistic behavior as parents have anecdotally claimed.”
For the double-blind study, funded in its initial phase by supplemental funds granted by the Department of Pediatrics, researchers will enroll 38 autistic children ages 3 to 9. They will look at the influence of gluten and milk proteins in the intestinal function. Gluten is a protein in wheat; casein and whey are proteins in milk. Casomorphin, a peptide in milk; and gliadomorphin, a peptide in gluten, are thought to be related to changes in behavior in these children. Children will be taken off gluten and dairy products before the four-week study and then half will be given gluten/milk powder and half will be given a placebo powder.
Researchers will study intestinal permeability (leaky gut) through urine collection and behavior through psychometric testing.
Always good to get more answers.
Anecdotally, the biggest change since reintroducing wheat into Charlie’s diet is that we’re all less stressed about him getting “forbidden” foods into his system, and there is less worry among everybody as we can go to social events without bringing in “special food” that Charlie mostly turned his nose up at. He sees the rest of us eating something else, why not him; why keep excluding him?
But don’t worry, I am still not buying loaves of wonder bread. And, Charlie still has no idea what a Twinkie is.
Looks like there are a couple of other controlled studies that will be collecting final phase data in Oct-Nov of this year.
I knew about the one in Rochester, but not the one in Europe.
Maybe some kind of report will be out before the end of the year.
I’d be interested to know what sort of screening questions were asked re: other relevant medical issues, medications, etc. The effects of many of the antipsychotic meds on metabolism and blood sugars may skew some of the data; I’ve not seen specific data but anecdotes (including my own) which suggest that those w/blood sugar related issues *may* be more sensitive to many foods —wheat, soy, dairy included.
Meant to add that those sensitivities, for me, show up in sluggish thinking, mood swings, sleep disturbances and skin rashes. When I am more careful with my food (though I’m not always, I confess!), I am more alert, happier, my ability to cope with the unexpected is also better.
Hi Kristina
I do not understand why the most recent findings on gluten/casein alelrgy/intolerance are not included in these trials as previous clinical aspects ( including nutritional aspects and also metabolic and biochemical ones) to compare before and after the diet. There are a lot of published literature on silent gluten/casein intolerance/allergy-beyond celiac disease and how it can impact liver/kidney functioning and absorption. For my son for example- that was tested for celiac disease and became positive-, the concomitant problems were multiple- and related to malabsorption and other problems.
While I totally welcome these studies (Son has been GF/CF for 2 years and the results remarkable), I worry with this one. Keeping the kids off for 4 weeks may not be enought to ‘clear’ the stomach of all gluten and casein. AND, if they are going to just give a one time drink and watch for effects, that may not prove anything either. There have been times that Son has cheated and has been ok.
I think it would be really hard to set up a good study, and although this is great, I worry that if there are already flaws, some groups might point fingers and we’d loose our credit that it works at all.
@Robin,
I was wondering too about the duration of the study—4 weeks just does not seem like a long enough time.
I tend to think of our experience with the diet as a way to think about how, yes, what you eat can equal what you are. We still avoid most overly processed junk food snacks and foods for Charlie—-since many of these have gluten and/or casein it became a habit to avoid them. Charlie had a desire to try Cheetos for the past year but doesn’t seem so interested now. He’s been very healthy this past year, and this has been the year in which he has eaten more “forbidden” stuff, but also plenty of Really Good Food (I guess the sushi pays off).
@María,
I’m looking for more information on the study to see what, if, other studies the researchers have considered.
I was about Charlie’s age when someone offered me a twinkie, and I looked at them like they were nuts and asked “what on earth is a twinkie??”
The best (only?) benefit I see of GFCF for those who don’t have defined celiac is that it’s impossible to self select a diet of absolute junk.
I tried the diet with my son for over a month (he had just turned 9) and we saw a little change, but not enough to let him stay on it despite his huge weight loss that occured at the same time. He just ate gf/cf junk and never caught to new or better foods. I have to say that he did eat way, way less fast food which is probably the reason we saw any changes more than the from the gf/cf diet itself. I don’t know, I beat myself up about it a lot, but have to pick my battles daily, and the issue of diet is one I have to pick a lot, he’s still a horrible eater.
Food cycles through the system a lot faster than people realize. There were even mercury studies in Brazil last year showing heavy metals (natural levels, for their water) leave within 36 hours.
However, hair samples can reveal things consumed for nearly 60 days. I never understood why we don’t test hair for drug use instead of urine. Probably cost issues.
Anyway, the times do make some sense, based on my readings. Plus, I tried various diets and can’t survive on them — just no way. Blech. I’d rather die than give up my beloved junk foods. Why live without joy?
See, they also have to choose kids without food issues/sensory issues for this one. My son wouldn’t make it on a GF/CF diet, since his diet is so incredibly limited. He would get absolutely no protein if he didn’t eat cheese toast or chicken nuggets. That’s just the way it is.
Hello friends -
Funny story. The first day we walked into a DAN doctor office, about three years ago now, the doctor told me that I had food sensitivities; based on the bags under my eyes.
I figured she was crackpot, but my wife never let go. She hassled me for about two and a half years to go GF, which I finally did on or about 1/1/08. The strangest thing happened; the bags under my eyes dissipated. Stranger still, if I eat some bread / fried chicken / whatever now, I start to cough and have to clear my throat. I have since tested negative for celiac, but positive for gluten sensitivity.
During this time, Luke has been GF. He continues to get eczema and some rather difficult to misinterpret bowel issues when he gets his little hands on foods with gluten in them.
We had an autism moms (and me) GF/CF tasting party @ the house last night. The biggest hurdle, IMO, is finding fat substitutes that aren’t crisco or otherwise very un natural; or just finding ways to cook without that much fats. Easy except with baked goods. The availability of GF pastas has come a long way.
OK!
- pD
Mary, same with our youngest. He wouldn’t have any vegetables at all if we didn’t still feed him baby food (he’ll be two in a couple of weeks), and even then, we have to alternate between spoons of that and of yogurt or baby cereal to “trick” him. The sight of most food offerings triggers a meltdown, and no tricks work–not peer pressure, endless “mmmmmms” while you eat some delectable offering…nothing. And even for some foods he does like–and I can count those on my 10 fingers, and most are fruits with ‘nilla wafers and goldfish thrown in–they have to be presented in a specific way or there’s a meltdown. The thing is, we ignore the meltdown and just leave it as-is, and he *still* will *not* eat it. It must be in a certain way–usually unbroken and in a bag. He refuses to eat any kind of meat whatsoever. So, if it weren’t for yogurt and milk, he’d be woefully low on fats and animal protein. In my book, that would be a bad thing.
We’ve never had bowel problems around here with any of our three children except for a brief bout of constipation when TH was potty training because he was scared of the toilet. Our kids get fish oil and acidophilus daily.
There are reports in some journals that these special diets result in serious bone density loss among boys. The one report I recall reading in an academic journal indicated supplements did not offset the bone density complication.
Since I seem to break something on an annual basis (winters in Minnesota), weak bones would be a serious problem.
A lot more research needs to be done on various diets and allergies. I react poorly to many vegetables. Very, very poorly. I get horrible cramps and worse.
But, I’m great if I eat lots of meats, breads, pastas, and such. It isn’t that I don’t like the taste of some vegetables… just the reaction.
Kristina blogged on the bone density.
http://www.autismvox.com/dont-got-milk/
I’m really interested in what Rochester reports. I passed the study protocol to some folks who have some experience, and they thought it was a good research design as proposed. FWIW–Eleanor is not on a special diet and does not have any digestive ills, apart from a lactose intolerance which both myself and my mother also had, but I’m catholic on the issue.
Good to hear there are serious studies being done into these issues. I look forward to hearing the results.
Science Daily posts the press released about the study with this title:
“Diet And Autism Research Focuses On Which Foods May Affect Autistic Behavior”
Just found that of interest as it draws attention to the link (or not) between foods and behaviors.
@Emily – our son is almost 3, and still eats baby food. In fact, he still eats essentially stage 2 baby food. That’s how we get fruits/veggies into him. He was in feeding therapy for a couple of years to even get this far. Before I had him of course, I was totally convinced that my kid wouldn’t be one of those toddlers who only ate chicken nuggets and cheese pizza. Ah, to get him to eat even pizza…
So Charlie isn’t positive for celiac disease after all?
FWIW, my first cousin, who is the most profoundly nonautistic member of my family, has celiac disease, and has done much better by adjusting her diet correspondingly.
And Patty Clark z”l, former officer of the Greater Georgia chapter of the ASA and at the same time a vital part of the autistic self-advocacy community, finally in late middle age got the medical attention for her GI issues that she should have had as a child, and was diagnosed with celiac disease. Patty was instrumental in helping shape various aspects of Autreat, including the GF/CF options in its menu, in the years before her untimely death from a massive stroke in 2005.
(z”l is a transliterated abbreviation for “zichronah librachah”, Hebrew for “may her memory be a blessing” — a common thing in Jewish tradition to append to the name of someone whose absence from the world is sorely missed.)
@Phil,
I guess you could say, the jury’s still out about this. Charlie’s seem to have done ok with the addition of some bread products to his diet, though it’s also the case that he generally doesn’t eat a lot of wheat, by force of habit (all those years on the diet). I still cook “vaguely Asian” for him and we still don’t have a lot of bread products around the house—-it’s made going to social occasions less stressful and better for him.
Thanks for the explanation, very much.
For passionlessDrone – we have a GFCF 15 yr old, endless eating issues, but we have found a “chocolate sandwich creme cookie” (Can I mention trade names?) that is gluten-free/wheat-free/diary&casein-free/egg-free/trans fat-free. You think, “yeah, sure – yuck” but it tastes like the “real thing” – you cannot tell the diff!! It is sooo hard to find anything GFCF & egg free baked-goods-wise that he’d actually want to eat. We got our local Kroger’s and Whole Foods Market to carry this cookie (21 to a pkg, too!) It is the single best GFCF discovery I have ever made and I can’t fathom why it’s not more well known – the local stores can’t keep the cookies on the shelves now!