Gluten-free more and more common (and not just for autism)
August 18, 2008 by Kristina Chew, PhD
Filed under Health
Gluten-free doesn’t have to mean flavor-free: the ultimate guide to wheat-less eating trumpets a recent post on Epicurious. Who don’t you know (sister-in-law, aunt, close friend from college) who hasn’t noted to you, “I’ve been going gluten-free and I feel so much better….”.
As long as my son’s been diagnosed, the gluten-free casein-free diet has been touted as a potential “treatment” for autism. Once we were fanatics; now he has the occasional bun with his hot dog and I pack his lunchbox with sushi and spring rolls and other gluten-free casein-free eats. And I keep finding more and more gluten-free items in the local grocery stores and hear about more and more people trying “the diet,” which was most recently promoted by Jenny Mccarthy, who attributed her son’s “recovery” from autism to the diet.
Today’s ABC news reports on Lend4Health, a blog created to provide “community-based, interest-free ‘micro-loans’ ” for families wishing to seek “biomedical treatment of children and adults with autism spectrum disorders (or other related issues).” As these treatments have not been scientifically proven to “treat” autism, insurance companies do not pay for them (though there are families who have gotten them paid for via insurance, by saying that their children have other medical communications that make some therapies necessary):
Both donors and recipients on Lend4Health’s blog swear by the “bio-medial” autism treatments the site advocates, often provided by the Defeat Autism Now!, or DAN!, group.
Jeanne, who asked that ABCNews.com not use her name to keep her as an anonymous donor on the site, has personal experience using the DAN! protocol with her 7-year-old son, who is autistic.
Jeanne said “he went from nonverbal, wearing diapers,” at age 4, when he started the DAN! protocol, to speaking and attending school at his age-appropriate grade level.
“Obviously it’s working or people wouldn’t be doing it,” Jeanne said.
But many health insurance companies aren’t so enthusiastic. Elements of the DAN! protocol, such as blood allergy tests, endoscopies, diet counseling and a detoxification process called chelation, are covered by insurance companies for other conditions.
We did many of the treatments in the DAN! protocol, though not chelation, which has been linked to the death of at least one autistic child; the rationale behind chelating a child is based on a not-at-all proven theory of autism causation, that that mercury in vaccines can be linked to a child becoming autistic. I liked to think that the supplements and special foods that we were giving my son were helping him and once a parent gets started, and sees their child doing kind of ok (which may be because of educational therapies and even because the child is growing and learning more), a parent is not inclined to stop buying cases of their special rice crackers or having two toasters so not a crumb of gluten will touch the lips of an autistic child.
And if everyone’s doing it, is “the diet” really a treatment for autism?
Diabetics can occasionally have ice cream, candy, chocolate with no short term problems, but they do have long term ramifications.
I think there’s truly a need for moderation—-about what the gluten-free casein-free diet can and can’t do, and about the need to keep things varied.
There are some experts (gasterenterologists) that believe as much as 80% of the population may be undiagnosed celiac, and the current prevalence rate is 1 in 133. Why should the rate be any less high in the autistic population? (The last claim I saw was that the diet helps 65% of children, according to a study of 25,000 families done by the Autism Research Institute)
Personally, as a person with celiac who also has a severe milk allergy (among others), I’m not about to complain about the existence of products that I can eat and that don’t taste like cardboard…
I have a health condition that has been said to be controlled in part with a GF diet (not celiac disease). I have half-heartedly tried it, but I also would have to get rid of caffeine, chocolate, sodium. Basically, from what I’ve read, our bodies, especially women’s bodies, have a difficult time processing gluten as they get older. I’ve also read a lot about how we were never made to ingest casein either. It’s interesting and some of it makes sense, but I haven’t been willing to really commit to it yet.
We tried the GFCF diet for my daughter when I first heard of the possible benefits based on the autism diagnosis. We also thought it would help her medically with some of the issues she was having. It didn’t change things medically for her, but she did start talking. The “effects” seemed to wear off and we didn’t see much progress after a few months and she started eating MUCH less than she already was eating, and for a number of reasons, we decided to let go of the GFCF diet. I’m sure it has some benefits, but for now, the pain of implementing it outweighs any benefits we might reap.
I do think it’s great that more and more products are being sold in more common stores with such clear labeling for those that are needing to avoid gluten!
No GFCF here but we do control all of the kids diets. Lots of fruits and veggies, organic meats and cheeses…no super sugary sweets or sodas. They all have a milk intolerance so they only have soy.
We thought about the GFCF for about two seconds and then tossed it with the rest of the life altering ideas.
Actually, Chuck, diabetics can have and need to eat a certain amount of carbohydrates. Ice cream, chocolate, and other sweets and sugars are like any other carbohydrate, and so can be fit into the dietary needs of a diabetic.
We’ve got 5 kids, 4 with ASD’s, 1 with ADHD. We’ve never done any GF/CF diets with them, despite the fact that celiac/gluten sensitivities do run on both sides of our family. Why? Well, for a variety of reasons. 3 of our kids are from my husband’s first marriage and we share custody so trying to do a special diet 50% of the time probably isn’t going to be all that effective. Also, most of our kids are picky eaters and we just decided, with 5 kids, that wasn’t a battle we really wanted to wage. And since there hadn’t been a lot of studies done to validate the claims, one way or the other, we figured we’d only do it if one of the kids seemed to have an actual medical issue, like celiac’s, that would demand that level of dietary control. To date, we haven’t really seen an evidence that they are affected in that way.
That all being said, I certainly do agree that you are what you eat. We try and make sure they have lots of healthy options for food choices at home – lots of fruits, lean meats, etc. – and that their meals are balanced.
One thing I myself have given up recently is soda. Any kind. I am a BIG coca-cola addict but recently started to have some IBS issues. Since my brother was just recently diagnosed with Celiac, I was wondering if that was something that was effecting me as well. I figured that I’d start cutting out caffeine and such before going to the doctor for the blood test, since they’d probably have me do the dietary changes first anyway. And I have to say, just cutting out the soda and drinking more water has eliminated most of my symptoms. So, I do believe that diet can impact your health but I think you have to use common sense.
Charlie’s diet leans towards “vaguely Asian” (here we are at the beach and he’s been insisting on his comfort food, good ole’ white rice the Chinse way). One reason I stopped getting him gf cf bread was that not only did he stop eating it—all the emulsifiers had a constipating effect. Nothing like Vietnamese spring rolls with the rice paper wrappers!
The Autism Research Institute is a long-time advocate of biomedical treatments and the DAN! protocol, so parents who respond to its surveys may be parents who are more likely to try something like a special diet.
Junk food seems like a more serious culprit in less than good health!
I’m checking out the link from the beginning of your post… my daughter is gluten free because of suspected Celiac. I’m always looking for recipes that she might actually eat!
It’s definitely the case, that it would be far easier now to go gluten-free, with so much more available in the stores!
I had to laugh about the two toasters thing. I worked one summer in ESY with a boy I used to work with. He’s not on a gluten free diet, but another boy was. I sat at the other boy’s desk after eating a sandwich with white bread for lunch. It was hard not to say anything as I was being yelled at by his 1:1 for potentially contaminating his desk with gluten because I hadn’t washed my hands.
And two pots, two sets of utensils, two toaster ovens……
I did look at the diet years ago but knew I didn’t have the energy to implement it. I did talk to the neurologist about it and he said he was unsure as well. Who can tell in 6 months if it is the diet or development? And I knew I could never be 100% diligent.
We did go dairy free (which only requires 2 weeks to see results) and it did clear up my younger son’s constant runny nose. He has since gone back to milk (drinks chocolate milk all day long) without any problems.