Yes, It Is Possible To Get Tired of French Fries
October 27, 2008 by Kristina Chew, PhD
Filed under Health
The “special diet” = the gluten-free casein-free diet — has been touted as an alternative treatment for autism for as long as Charlie’s been diagnosed with autism. I still have a rather battered copy of Lisa Lewis’ Special Diets for Special Kids on top of the refrigerator. Ever since we put Charlie on the diet and I spent hours reading the labels of food products for “traces of gluten or casein” and tried to cook everything using strange new ingredients (tapioca flour, xantham gum, Vance’s Darifree), I’ve read reports extolling “the diet” as this October 26 Yuma Sun article.
As a toddler, Charlie had rashes on his face and torso and these disappeared after he started the diet and we thought (we thought) he was “more alert.” We stuck to the diet until about two years ago. Other mothers had told me about taking their child off the diet most of all because a child who could never eat pizza or have a donut or cookie with the rest of his class was de facto exluded from joining in some important social activities. (And sure, one could bring a special gfcf brownie, but it was never the same……….).
We didn’t go out of our way to give Charlie wheat in any excessive amounts; a bagel here, a pizza slice (without the cheese—-we’ve still avoided giving Charlie any dairy products to eat) there. No terrible regression into zombie-like gluten-induced out-of-it-ness ensused. In fact, as I’ve written before, Charlie’s seemed to appreciate new opportunities for eating out at restaurants and sharing in snacks with his classmates, and there was more of anyone (ok, me) getting hysterical if he ate a crumb of a Saltine.
The main thing that we’ve noticed since Charlie’s been off the diet is that he’s been (though it might not seem like it from some of my posts) eating less. He likes his bagels on the weekends and has become very nonchalant about French fries (a mainstay of his diet, it seemed, when we were in our “high gluten-free casein-free diet” period). A couple of weeks ago, we got a nice Jersey pizza after a busy day and Charlie had a few bites of crust, told us he was done with it, and asked for some watermelon.
I guess that’s what happened when Forbidden Fruit Syndrome—when the desire for a food (bagels) increases in proportion to one not being “allowed” to eat it—is no longer an issue.
(And in case you wanted to know, there’s rice and homemade spring rolls with shrimp–gluten-free eats, unintentionally—in Charlie’s lunchbox for Monday.)
I’m very confused about this GF/CF diet stuff. Will all kids have less disagreeable behavior if gluten and casein are removed from the diet, or is it just autistic kids? If a child does not have celiac disease or a dairy allergy, how will removal of wheat and dairy from the diet improve behavior?
Several comments:
First, the GFCF diet works wonders for some and does nothing for others. My nephew knows if he ate something bad. He gets pain in his stomach and becomes very cranky. My son David had no change at all with the GFCF diet.
Second, it is hard for anyone to go on any diet while watching others enjoy forbidden fruit. For my nephew, the stomach pain is motivating. I do not know what motivation Charlie might have.
Third, the GFCF diet is based on leakage measurements done with autistic children. If you do not believe the leakage is real then there is no reason to do the diet. On the other hand, if there is leakage of gluten and casein peptides why would it stop at gluten and casein?
I cannot speak for everyone. We attacked gut leakage from a different angle for David and it was life changing. David went from me dragging him through his homework for 2 hours every night to doing it on his own in a half hour.
Please, I am not claiming a miracle. Based on what I have seen of miracles they only happen for one person. I am just saying that gut leakage is one of the many possible symptoms of autism and doing something about it is one of the things that modern medicine could take on if it had a mind to.
How do I know if my child has “gut leakage”?
Just my opinion and anecdote alert:
I would imagine any person who has celiac or a gluten or casein or lactose intolerance, or food allergy (walnuts, peanuts, strawberries, metabisulphites, etc.) will probably feel better if not exposed to a particular food that causes intestinal distress or reaction (I have friends with such severe nut allergies that they have to carry anti-anaphylaxis shots). There are some theories around about opioid peptides, but the research has been somewhat mixed. There is a double-blinded controlled study coming out of Rochester this fall, maybe next month, dealing with GF/CF with autistic children. There are many who have much more detailed knowledge of the various diets and details therein.
My daughter has a lactose intolerance (as do I and my brother) and has painful gastrointestinal problems if she drinks milk; for that reason her diet is low in dairy unless treated with lactase. Aside from that we have not observed any difference cognitively or behaviorally having trialed restricted diets. There are other variables that have been much more significant in both those areas for her. Your mileage may vary.
Besides the milk, after a point we did not make a big deal about food except to have varied types around and to try not to make a battle of meals. That has worked out all right and Eleanor has a varied, and I would say, balanced diet. She is willing to at least try a taste of almost anything.
I have noted that it only takes a little bit of overreaction by us to fire up “Forbidden Fruit Syndrome” with Eleanor. The biggest bugaboo in memory is candy. When she had a program that heavily relied on sweets and restricted them at other times, she would wolf down enormous amounts of candy if someone forgot to “lock them up”, and turned into something of a candy-aholic. I worked to fade those out with other things and made candy non-contingent and no big deal, Over time using that approach, the candy madness faded. She still likes candy, as do many children, but has times when she can take or leave it. There’s been a small chocolate bar sitting open on my desk for a week–there’s still about 50% of it left, which is not too bad.
@LBC,
One thing I would say about the GFCF diet: It was a fairly straightforward “treatment” for us to try when my son was 2. We simply took milk and dairy out of his diet; there are a lot of substitutes for milk such as rice milk, soy milk, and many others. In the early days when we were waiting for an official diagnosis (which we knew he was going to get), trying the diet made us feel hopeful; made us feel we could try something.
I’m Asian American and taking out wheat was not such a big deal for us. Charlie always liked rice, rice noodles, Asian food of various sorts. Over time, we have as I noted reintroduced the gluten, but we stay away from casein/dairy products.
Before trying it, perhaps you might try to keep a “food diary”—write down everything your child eats for a week and note any reactions, or if eating certain foods seems tied to certain changes (for good or not so good).
On food intolerance:
http://www.webmd.com/allergies/foods-allergy-intolerance
On the “leaky gut” theory of autism:
http://www.autismvox.com/new-study-cast-doubt-on-leaky-gut-theory-of-autism/
The “leaky gut” theory of autism is doubted:
http://news.bbc.co.uk/2/hi/health/7300327.stm
On what’s called gut leakage:
Since autism is neurological (???), it just seems odd to me that it can be helped by eliminating foods from the diet. Can a change in diet help other neurological disorders, like epilepsy or Huntington’s?
People used to say that sugar consumption was linked to hyperactivity, but as far as I know that has been debunked. I guess I’ll have to ask an MD to get a better understanding of this stuff.
LBC,
There is a specialized diet that can be used, under a physician’s direction and supervision to control some epileptic seizures. I’m not posting it because I’ve seen some folks contemplate it as a “maybe I’ll try that”. It’s not a trivial “hey let’s give that a shot” kind of thing because it is extremely atypical and needs monitoring.
Other children who have particular metabolic disorders may require restricted diets to prevent physical complications and development of mental retardation–such as low-phenylalanine diets for those with phenylketonuria, for example.
So I believe that there is a place for special diets as medically required–but I concur with you that for medical advice it would make sense to talk to a physician.
But is autism considered a metabolic disorder? I guess that’s where I’m confused. I understand that a compromised metabolism–like, say, diabetes?–would require a special diet, but I thought autism was a neurological disorder. I see how food effects the metabolism, but how do wheat and cheese adversely effect the brain? Or does autism mess with the metabolism somehow? Like I said, I probably need to talk to an MD to get this stuff straight.
The notion that autism is a metabolic disorder is one biomedical hypothesis about autism—it is, again, a hypothesis. Autism is neurological disorder but there are a lot of hypotheses and theories about it floating (so to speak) around.
Here’s the rundown of the NIMH study in Rochester that Regan mentioned:
http://clinicaltrials.gov/ct2/show/NCT00090428?term=Autism&rank=24
I will be keeping an eye on this, waiting for the result. I haven’t tried the GF/CF diet with my son because it just seems nonsensical to me. He doesn’t have stomach aches (that I know of) or any allergies or eating problems, so I haven’t been able to figure out what changing his diet would do (besides depress him). But if it turns out autism is caused by a wonky metabolism and I’ve been “poisoning” my son with wheat and cheese, I’m going to feel pretty horrible.
There’s lots of food allergies and intolerances in my family, but cutting out foods has never made any of us less autistic, just gave less stomachaches and rashes (and death) and…. helped… stool issues
(euphemisms hooray).
It definitely makes sense to cut out foods that are not tolerated, like when eating something results in diarrhea or a rash. But what I’m curious about is how food effects behavior. You never seem to hear about parents cutting out foods for “normal” kids who have behavior problems, but this is frequently done for autistic kids.
My second son, who is not autistic, could not drink cow’s milk when we first introduced it. It gave him diarrhea every time (although he had no problem with cheese or yogurt). One pediatrician I talked to (an acquaintance) said, “That’s an allergy. Switch to soy milk right away!” But our actual pediatrician said, “If he can tolerate the yogurt and cheese, he doesn’t have an allergy and therefore does not need soy milk. He’s getting all his calcium from the yogurt and cheese, so just avoid milk for now. Try it now and again to see how he does. This kind of thing often clears itself up.” So that’s what we did, and after four or five months, my son could drink cow’s milk with no problem whatsoever. I just wonder how this would have gone down if the child in question had been my autistic son, and if the doctor had been a DAN doctor. I have a feeling diarrhea would have been “proof” of the leaky gut (or whatever), and the kid would have been put through god knows what to “cure” him.
I guess my point is that even “normal” kids get diarrhea, stomachaches, rashes, etc., and we don’t do the things to/for them that we do for our autistic kids. We tend to take a more common sense approach to health glitches with our “normal” kids, but call in the big guns when the same symptom shows up in our autistic kids.
Nice comments, LBC.
We’ve got five kids, 1 with ADHD, 4 with ASD’s. We’ve always been told and read that it’s a neurological disorder and, given our particular family, my husband and I feel that genetics is definitely the main culprit.
We’ve never done GF/CF. We keep an eye on the kids because my brother and his sister have celiac disease, so there’s family history. My brother reports that since he’s gone off gluten, he definitely feels better and that allows him to rest better which allows his to think more clearly.
Our kids haven’t ever complained or shown signs of have celiac issues so we just decided as parents not to do it. If they do start showing symptoms, then we’ll take them in to the MD and see what’s up.
It’s funny because Meghan, our 5 year old, isn’t a big carb kid anyway and never has been. Her order of preference is fruit, meat, and then maybe some bread product. So maybe she does have issues and I won’t ever really know because she kind of takes care of it on her own, in terms of what she likes to eat.
This is interesting. C’s little 2 1/2 y/o brother A, who is pretty neurotypical, has been taken off of milk to see if that is causing his GERD on the advice of the doctor. C will still have milk though. C’s problem behavior seems to correlate much stronger towards cold weather (can’t go outside for 3-4 hours a day). A, on the other hand, throws huge fits when he has reflux. So much so that you would think he was the one on the spectrum if you walked in on it.
Digestive issues are enough to make any child a fussy, tantruming mess. Nevermind a child who already has autism.