My husband won in our battle over the gluten-free/casein-free (GF/CF) diet for our PDD-NOS daughter. A portion of my skepticism--aside from the lack of large-scale, validated scientific research—is rooted in the fact that my husband suggested GF/CF, but it’s me who will have to implement the diet. I am the one who buys and prepares Fiona’s food. Another complicating factor is my daughter’s size. She’s in the fifth percentile for weight and height, so I don’t want to reduce any calories in her diet. Also, I refuse to get her blood tested because her veins are so tiny, doctors have resorted to drawing blood from her neck while she was under sedation(!).
While researching the GF/CF diet, I encountered many dot-com websites selling products that purport to heal children on the spectrum. To avoid any exploitation, I decided to take advice only from the dot-org and the dot-gov websites. The best website I found for phasing in the GF/CF diet is TACA (Talk About Curing Autism). Right away, alarms went off because the site’s very name mentions “curing autism.” Still, I like the advice they give in the “Going GF/CF in 10 Weeks!” page. It’s a sensible, low-impact, diet transition from wheat and dairy to wheat- and dairy-free meals.
Another concern I have of the GF/CF diet is the harebrained theory behind it. Supposedly, some children on the spectrum have the perfect storm of digestive problems and small stomach holes. They are unable to digest wheat and milk, according to the theory, and these wheat and milk particles leave the stomach through microscopic holes, enter the blood stream and make their way to the brain. The result has the effect of releasing opiates in the brain, drugging our children and making them spacey, unable to concentrate and unable to learn. So feeding wheat and dairy to your child is causing them to be stoned all day. Just say no.
In spite of my concerns and skepticism, I will give GF/CF a try. I don’t think I’ll buy any books on the subject, though. The collection of books available are written by authors whose living depends upon the belief that a GF/CF diet works for children on the spectrum. Along with the unproven supplements companies, I consider autism books a part of the autism industry, too.
Excuse me, now. It’s time to go buy some rice milk.
Confessions of an Autism Mother:
I am not a warrior mom;
I am not a warrior mom, revisited;
I slipped my daughter a mickey last night;
I agree with Sarah Palin;
I don't trust that surly bus driver and grumpy matron;
I'm afraid I know more than our Special Ed DoE official.
Comments
Dearest Kathleen---Go, go, go for it! I wanted to recommend Ms. Julie Matthews of Nourishing Hope for Autism---she's one of the top autism nutrition-diet specialists/DAN! practitioners who helps families from around the world to bring about real recovery results for children---biomedical autism diet and supplementation intervention. No hokus pokus or snake oil. I know her personally. She's an amazing woman--dedicated to you and your daughter. From reading your blog--the two of you will hit it off. Don't do implement diet alone! Email her at julie@nourishinghope.com Her parent reference book: Nourishing Hope for Autism: Nutrition Intervention for Healing Our Children launched at ARIs biomed conference in Sept. Recommended by Elizabeth Mumper--Med Director of ARI. From a Mommy in Montana
Watch out for rice dreams rice milk - it has gluten
The simple truth is this: when my child has gluten, soy or dairy he is more autistis. When he has non he is less autistic. Now, it isn't simply that we withdrew these substances and he got better --that could be blamed on other things. When he accidentally has the wrong thing to eat, he regresses terribly. Oddly, I usually have noticed his behavior *first* then found the offending food.
I don't really understand the suspicion of all things that turn a profit, it seems you shouldn't trust mainstream medical based on that, but if you see your way to spending money, I (as a Mom) highly reccommend Houston's Enzymes in conjunction with the diet.
I also hope your daughter experiences what so many children have--increased weight gain due to better absorption of nutrition.
And by the way, I was once a non-believer too :)
Good for you! For your information there is a link from the TACA website with research regarding Autism an the Diet from such "hairbrained" institutions as Harvard. If you click on the GFCF diet button on the TACA home page, there is a link on the left called "Research on Dietary Intervention and Autism"
Also - you might want to consider getting a TACA Mentor - these are volunteer parents who have "been there, done that" regarding implementing the diet and could help if you find yourself overwhelmed, or perhaps help you find any hidden gluten or casein if you feel you are not seeing results.
Good luck - and let us know how it goes.
Yes, good for you, Kathleen! They had to drag me into the diet kicking and screaming. The fact that my own mother bought me the book "Special Diets for Special Kids" put me off of the diet for a whole year. Then, I took dairy out and saw no difference. Another year went by. I decided to try the diet again, this time taking out gluten and soy too. We saw huge changes-no more vomiting, a big jump in language scores (measured by two schools over a six-month period of time who had no idea we were doing the diet). I understand how scary it can be, especially when your child is a very picky eater to begin with-my son had fallen off the growth curve and I was very hesitant to limit his diet at all. However, TACA has some great ideas on their site and I am happy to say my son is growing again. Good job trying the diet and remember to reach out to someone if you need help-other parents are the best resource out there.
-christina
Please don't subject your child to this idiocy. If you switch brands of dog food and really watch your child you will see that this improves the symptoms of your child's autism (no I'm not suggesting that you feed your child dog food, in fact quite the opposite). These kids (like my own) will improve as time passes even with no intervention. This natural maturation is mistaken by the advocates (who assume causality) of all this crap. The GCGF diet has resulted in my 6 y/o son's obesity and possible diabetes, as well as an increased sense of being different and isolated. DONT DO IT! Good luck, and God bless!
I applaud you! I am so happy to hear that though you don't believe this will have an affect on your child, you are willing to do the craziest things in an effort to grow beyond the confines of your own understanding! Kudos,
I can tell you that the difference in our child was astounding, not instantly but over time, he made such great progress that we guard his diet with our lives. When he has an accidental infraction, we pay a huge price. so stay the course, your on the right track.
One of the most difficult aspects is that you can't see the inside of their digestive track and the damage being done so many people go on sight instead of taking a honest attempt. If you do it will reveal the benefits that could make all the difference for your child. It is non-invasive and a safe action.
Nutrition is so key to health. This was our foundation and we were able to build on it and access our son in areas that were previously unaccessible. His receptive language, comprehension, frustration level, sleeping patterns and speech not to mention finally getting potty trained! Yahoo!
Taking a chance to see if this might benefit your child fits into the category of warrior mom effort!
Kathleen
Hi Kathleen, The link between autism and gluten makes sense - if you know how gluten works in the body. One way is how you describe - like a psychotropic drug, the partially digested gluten causes a hyperpermeability of the gut, passes into the bloodstream and directly affects the brain in people who are sensitive. (Gluten sensitivity reactions like this can affect any body tissue.) This is exactly how your drugs work, many of which are derived from plants. Another type of gluten sensitivity reaction is where gluten in the bloodstream triggers an immune response leading to inflammation and autoimmune problems. Gluten also causes malabsorption of nutrients in people with celiac disease. Lacking the nutrients necessary for proper functioning, the brain or any other body system dysfunctions. Many neurological conditions are found in celiac disease. You can find over 300 symptoms, associated disorders and complications related to celiac disease at www.glutenfreeworks.com and in the book Recognizing Celiac Disease. The website has articles on autism you may find helpful. FYI, failure to thrive in children is a classic symptom of celiac disease so you should have your daughter tested. (And if you try to tell me she's like her mother, you should get tested too! ;) Dr. Green at Columbia University is excellent. Back to autism, the diet seems to improve most children, but does not always work. Why? Damage, including exposure to gluten during fetal development, not following a 100% strict gluten free/casien free diet, and "too late" (past age 3) removal of gluten/casien from the diet are theories.
I wonder if that includes the book by Seroussi? She was already quite successful before writing her book, and her husband is likewise more than well off, being a chemist with DuPont, so the royalties from her autism book could hardly be seen as their "bread and butter" (made with gluten-frere flour or dairy, of course).
And I believe her husband was the first to use Gas Chromatography Mass Spectrometry to identify the opiod peptides coming out of their child in his urine. This is hardly smoke and mirrors, as it is the basis of a large body of chemistry, including those used in criminal forensics. He also did not do any of the research into the properties of these peptides; that was done by numerous other research professionals.
Perhaps Ms Byrne you might take the time to read just one autism book. To preserve your desire to NOT support the "explopitation-of-autism-industry" you could get it from your local library (inter-library loan will take care of any deficiency in the local collection).
The surest way to test whether this is helping your child is this - no casein for three weeks - none at all. Then bombard your child with casein - milkshakes, cheese, etc - over two days. See what happens.
Gluten takes much longer to leave the system, so you can't try it in the same way.
If you look at ONE book, I'd suggest Dr. Doris Rapp's "Is This Your Child?" Look at the pictures on the back. My daughter looked like the red-faced child - the "slapped cheek" look. She also had very rough skin on her upper arms. She had both for as long as I could remember. Once off dairy, both cleared up.
Andrea
Kathleen,
Did you know that going GFCF can cause bone thinning? Please be careful that your precious child is properly nourished, and has calcium supplements.
And yes, you are correct, the whole idea of opioid peptides has been completely debunked. Please visit pubmed and search for "autism bones diet" and "opioid peptides autism mass spectrometry". The latter will give you the papers which show that with rigorous analytic techniques, opioid peptides cannot be found in autistic children.
Don't be bullied by people who want you to waste your time, energy and money on making your child a guinea pig. Every parent I know who tried GFCF gave up after about a year, and didn't see results. Don't wait too long, hanging onto an idea. Take time to do reality checks... I'm not going to put my son on it since he has no digestive problems. Seems like the leaky gut theory has been disproved so many times. Why waste your energy?
Kathleen, as another MA parent and a mother of a child with autism I would like to extend a hand of help, if you need it or want it. I can understand your reluctance to try things everyone is telling you is crazy. But the gut and brain connection is well documented in our kids. I've been doing this for 7 years, my son still has autism but has made improvements. I know a lot of other parents who get angry at the words "recovery" or "cure" but what we really mean is "getting better" treating their physical illness to move them up the spectrum. For some it's as easy as the diet alone, for others it's much more complicated. Autism is a whole body illness in my opinion and new research is showing large numbers of children with underlying mitochondrial dysfunction, calcium dysfunction, immune irregularities, GI dysfunction (especially in those regressive cases), etc. My son regressed, you may not believe me however I was well aware of what autism looked like and my son did not have one symptom before illness after vaccines started taking him away. For my son, regression was clear that's why I advocate and fight. However I respect parents and their own instincts about their children. The road to autism may be different for each child. I ask that you not be angry with parents who have had success, I have seen it, they are not lying or trying to sell you something. They are parents just like yourself who found something that works for them and just wanted to share that information. My son showed food allergies immediately after his MMR and many were removed after testing including dairy. But I was on and off the gluten free train due to tremendous other restrictions. It took me several years to realize gluten infractions and intake were causing absence seizures. It was only after complete removal of several months strictly and then an infraction to see the immediate changes. When a child seeks out foods as if they can't live without it is a good indicator it was causing some possible opiod reaction. GF/CF may not be enough, but giving it a try is the 1st step, opening your mind to all possilities is the next. If you need my help I am a Generation Rescue Angel in MA. I am the 1st one listed. I wish you tremendous success. For good fats consider mercury free fish oils, Hemp milk (living harvest chocolate milk is delicious), cooking with coconut oil, avacado, etc.
I sort of backed into the diet accidentally. I had only heard about the diet in passing and didn't know anything about the reasoning behind it. I tried doing an all organic diet as part of cleaning up my daughter's environment, and because that often limited my access to foods containing these ingredients, I really began to notice mood swings in my child when she did have them. When I seriously researched the diet, I was fortunate that I began to see improvements after nearly a week of implementing it. My daughter went from being in such a fog on her schoolwork that she couldn't remember the answer we worked out long enough to write it down, to where on the 6th day GFCF, she worked independantly for the first time through an entire worksheet. After more time she had other improvements. She suddenly started running out of the room if I cut up an onion, or she would say "smells good" to something more pleasant. She had never before shown any signs of having a sense of smell. Instead of her father having to greet her three or more times before she would she would respond (usually with a leave-me-alone wail), she started to say "Hi, Daddy" on the first greeting. She began to be more active, seeming to have more energy, and started inventing several of play routines. She still has a lot of damage to deal with and she has other food intolerances. Many everyday things are still a struggle for her. I don't see the diet as a cure, but I have seen it reduce or remove one or more ongoing, damaging processes in her development.
For Kathleen Byrne's husband-- here's a few things we all learn along the way:
Anyone who doesn't want the diet to work won't see results. It's too easy to screw it up.
The diet has been studied in peer-reviewed publications...in Norway. Success was seen with children diagnosed with "ADHD" who showed the same abnormal urine peptides as children with autism. Norway doesn't have the U.S.'s problem of regulatory capture or pharmaceutical censure of research.
There's gluten, dairy and soy in almost every commercial food, even those claiming to be "free", particularly treats. In our two year diet trial, we found that only "Foods By George" and "Turtle Creek" are completely reliable desert foods. Otherwise, only food from scratch is guaranteed.
Gluten takes six to eight months to leave the body completely. Though results can be seen quickly after a week of a "perfect" diet, the big changes won't be apparent until after six months. The first thing to go after the diet is implemented can be choreoform (bird-like) movement; then eye contact returns, the "poker-faced" glaze and intolerance to touch fade and the vocab starts growing in leaps and bounds.
There's gluten, dairy and soy in some dish and hand soaps and shampoos and it matters.
Inhaling the dust from, say, Cheetos or breathing flour in a bakery or any kind of airborne exposure to cuprit foods can set off a neuroimmune response for the more sensitive kids. These triggers are easier to observe once a child has been on a diet for an extended period and has behaviorally improved: you can see a sudden loss of skills, explosion of tantrums and subsequent sleeplessness for a few days. That's usually what sells people in the long run-- that peek back into what life "used to be like" before the diet.
Obvious GI symptoms aren't always present with gluten/dairy/soy intolerance. Constipation/one-too-many-poops-a-day aren't usually viewed as "serious" GI disorders but can be, particularly when this comes with bad behavior and turbulant sleep patterns (most people drug their kids for this: bad idea).
Anti-seizure drugs and many psychopharmaceuticals contain gluten, dairy or soy, even those claiming not to. Formulas can be changed without notice. Virtually all psychotropes induce or worsen mitochondrial dysfunction, which is an underlying contributor to so-called "leaky gut". Many also induce blood-brain barrier and blood-gut barrier porosity directly, which allows a lot more than gluten or dairy into the brain. The reason many stick to the GF/CF/SF diet is because it supplants the rationale to drug a child-- they sleep, the tantrums taper, they become more attentive, etc.
The casein-gluten-soy theory isn't based on "tiny holes in the gut". The vascular barriers between the GI tract and the BBB are set on the same cellular "switch", which gets "tripped" by several different complex mechanisms, some having to do with the immune system. Certain drugs can trip open the barriers as can certain antigens and toxins. Pub Med is a good resource for studies. Key words: "cerebral-vascular barrier".
Almost all juice boxes contain calcium lactate or hidden sources of culprit proteins.
Rice milk is sugar water, nutritionallly nil, but only Lundburg is GF/CF. Rice Dream has gluten. Hemp milk has omegas and protein.
1000 milligrams of calcium and approximately 400 of vitamin D are often recommended to prevent mineral loss. The problem is that almost all commercial brands of vitamins, particularly calcium, contain lead. Lead will deepen the damage of autism. Check the FDA website ("Lead in Women's and Children's supplements"). The FDA declared the amounts "safe" but this was contested by a member of the Senate because the amounts of lead in some brands are so high that maximum exposure limits can be reached in a few day's doses. You're about to be overjoyed at the array of "opportunists" peddling vitamins and supplements because they provide safer alternatives to commercial products.
Unless all soy is removed as well, you're unlikey to see sustained results.
Stool and urine tests can detect yeast and some nutritional imbalances. Yeast causes a lot of the "opiated" behavior as well. Sugar stirs up yeast. Saccromyces Boulardii, aka, brewer's yeast, kills candida and is a cheap, safe yeast remedy. Just beware the die-off period which can raise havoc and last a week or so.
Many sensitized children are also allergic to corn; some are highly sensitive to any grains at all and can only consume rice and vegetable forms of starch.
If you keep vaccinating, it will be hard to determine what alternative remedies are even doing any good. Get blood titers-- your child probably had excessive immune response to all the shots anyway. HiB fades but it's also one of the more dangerous shots for kids with autism.
It's actually "harebrained", not "hair-brained", since this is an education forum.
Harebrained: Thanks!
I just found this post and was wondering if you will post an update on how things are going? I'm considering a modified diet for my daughter and wondered what your experience has been. I too am skeptical about GF/CF and can't find many people who share the view openly.
I'd love to see an update, too.
If Kathleen is following TACA's "10 weeks to GFCF" we won't be seeing an update until mid February at the earliest.
Here's hoping your daughter benefits greatly.
I hope you take all of these positive comments seriously. We went happily into the diet, our skepticism lies firmly now with mainstream medicine. We did see improvements and regressions when there are infractions. You need to take this seriously and be strict. Double check all ingredients, it takes a long time, is worth the effort and will help your child. Believe!
Got something to say?
Examiner.com is looking for writers, photographers, and videographers to join the fastest growing group of local insiders. If you are interested in growing your online rep apply to be an Examiner today!