Has Anyone Tried the Gluten Free Diet?

1 in 124 people have celiac disease and have to be on a gluten free diet. I am one of them and I can tell you that once you learn what is involved in eating gluten free it just becomes a lifestyle change. It will take time, a few months to learn. For example, soy sauce contains wheat so you need to avoid that. Therefore teryaki chicken or fried rice is off limits. Rice Krispies contain malt which is from barley which is off limits. Once you get it though it is easy to change.
My kids do not have the disease but they eat my gluten free cereal, gluten free waffles, pancakes, crackers etc. You can buy a lot from trader joes and whole foods.
There are lots of gluten free cookbooks out there too.
Hope my 2 cents helped. Good luck!

Hi H.,

Absolutely, H.. I work with diet for children with autism. The gluten (wheat) and casein (dairy)-free diet can work wonders. One of the reason for picky eating is because certain children (many with autism and PDD) convert gluten and casein to opiates - this is like being on morphine and children become very addicted and restrictive in their diet to only eating wheat and dairy containing foods. So you are not alone, most children I've seen with autism/PDD are picky eaters but if you do the diet you will see they begin to open up their food choices. It is "doable."

I've seen it really help - stories from clients of children gaining language (from less foggy thinking), less diarrhea/constipation (which are very common from these inflammatory foods), and generally feeling better. Autism Research Institute polled thousands of parents and showed that gluten/casein-free diet has a 65% benefit rating. See http://autism.com/treatable/form34qr.htm

Often the whole family will do the same diet. Contact me with more questions.

Please let me know what you find out. I have a 3 year old son who has been diagnosed with ADHD. I have wondered lately if he has been diagnosed correctly. My son is also a very picky eater. We have the hardest time getting him to eat, let alone try new foods. I have been wondering about the effects of nutrition on his behavior, and if changing his diet would help. The problem would be in getting him to eat the new food.

Thanks.
Chris

I have also heard it's possible that a gluten free diet can help. We tried doing an elimination diet with our autistic son. The thing we found is that he was sensitive to yellow dye #5. I think the gluten free diet will be very difficult because PDD/autistic kids have such a limited repertoire of their diet and are such picky eaters, one reason is because of the texture of the foods. Our son would vomit almost daily for a while because of textures. Watch that. By the way, he is 18 and eats everything now. He started trying new things when he was 13 and we put him on the medication Abilify - a great side effect of the medication! Good luck and don't despair!

Hi H. -

I don't have children yet, but I have come across some information about how a change in diet can help austistic children. You may want to check it out, although I am sure there are many mothers with autistic children who will have more information than me.

When I started having many 'getting older' health problems in the last two years, I was inspired by "Ultrametabolism" by Dr. Mark Hyman. His approach to diet is marketed as weight-loss oriented, BUT most of his blog is dedicated to how diet can significantly improve auto-immune, ADD (adult and child), autism and many other systemic dieases.

The focus is on detoxing the child's and adult's body of heavy metals and other environmental stressors, and eliminating allergen triggers from the diet (I recall that he mentions gluten/wheat as one item to eliminate from a child's diet if ADD/autism has been diagnosed or suspected.).

I believe that changing my diet according to the guidelines I learned in Dr. Hyman's book (no wheat for me, almost toal reduction of sugar) is a huge part of how I got pregnant after 6 years of trying. I literally felt like a different person after the changes I've made.

I send you hope and love!
C.

Although we have never tried this, my dear friend di with her severely autistic son. He had never spoken other than "CHoo-CHoo" as he had a train obsession, he had never made eye contact and had frequent tantrums and at three had started hurting himself. SHe went gluten and cassien free and he had huge changes, then she remembered that whenever she drank soy milk while nursing him he would be up all night that night so she eleimated soy too. Her son now talks, makes eye contact and is doing so mcuh better. It is hard to do on a budget, but this family of five lived on less than $2000 a month. They ended up eating a lot of home cooked meals and mostly based on beans, lentils, eggs and rice. She made all her own salad dressings and marinades and although she had to work hard she believes it was well worth it.

Hi H., we do a gluten free diet for two of our three boys. In reality all of us in the family do our best to avoid gluten, but two of the boys require it as they have great problems when they eat wheat. Wheat free products in general are easier to digest and do not cause the stomach distress that wheat does.

One more thing we do with them is avoid all preservatives/ artificial sweeteners/chemicals, and in general follow the Feingold diet. Feingold is an ex-Kaiser children allergy specialist who found links between children's beahavior and stability to what they eat. He came up with an allergin elimination approach that first cuts out all allergic items, then gradually brings back some foods that may be okay. There are many studies he quotes between food allergies and Autism and ADHD. Here is their website: http://www.feingold.org/

Good luck.

Yes we have and helps a lot specially with behaviors... Love, G.. :0)

Hi H.,

I can highly recommend a gluten free diet, but for tons of wonderful information, check out Donna Gates' Body Ecology Diet - www.bodyecologydiet.com. She has actually produced a DVD series on how to treat kids with autism through diet and she and her team have been having astounding success. I think you'll be pleased.

Gluten sensitivity affects a huge percentage of the general population and medical science is only beginning to wake up and realize it. It's a result of our very refined, nutritionally empty SAD (standard American diet).

I'd love to hear if you have success through Donna's suggestions. Changing your child's diet can only improve his situation.

Blessings,

C.

oh my goodness. My daugher is on the Gluten free/Casein free now. Its the hardest and most confusing thing I have ever done. There about 50 ingredients that contain these things.. (oat, barley, etc...that you dont think about also)
It can get costly too, so be aware of that before attempting. the books state you need to do at least 6 months without any contamination to see if it works...that means not even using the saving pan, toaster, etc...
Whole Foods is a wonderful place for chix nuggets, fish sticks, breads, yogurt...etc. I too struggle with a picky eater, I supplement her daily with vitamins, to make sure she is getting everything she needs. It definetly changes the family, and pretty much we dont go out to dinner anymore cause its too hard to detect. Even menus that are gluten free, are not casein free...and casein is a pretty bad culpret according to most. Do you have a good GI doctor?

Diet and nutrition have a huge impact on Autism. We have a numer of parents of autistic kids that will recommend a nutritional approach to this problem based on their own success. If you are interested, please call A. at ###-###-####. We offer a money back gaurantee.

Hi! My son is nine and he was diagnosed with PDD when he was 5. We are using the Feingold diet with our entire family. I know it has gluten free information to it as well. We saw a huge difference in all of our children's behavior after starting the diet. It takes them off everything artificial. It is wonderful! Try their website for more information www.feingold.org I know the trials you are going through. PDD is tough, but manageable. We were told that our son would grow out of it - since his diagnosis, he has matured, but it still surfaces, especially when things change drastically. I wish you all the best! The diet has done wonders for all of my family. It is overwhelming at first, but once you get into, it all comes naturally! HA HA!

My daughter has been GF and casein free for 3 months. We saw immediate improvement with removing casein, but gluten takes 6 months to leave system so still not sure on that.

During course of diet, we decided to try the specific carb diet (in addition) to combat yeast. This diet has potential to heal the leaky gut, where as the Gluten free diet simply avoids the offensive foods.

Definately worth a try!! Check out the SPD/SID yahoo group, you will find all the info you could ever need. Also a SCD yahoo group too, or Pecanbread.com

My son is allergic to all the glutenous grains. Just wanted to say that a gluten-free diet is pretty easy to do. There are tons of products available at Whole Foods. Draegers (in downtown Los Altos) specializes in gluten-free products as well. You can get rice pasta in almost any grocery store now. There are also gluten-free flour mixes that you can sub for wheat flour in any recipe. They taste slightly different, but still good and most people would not notice the difference.

Feel free to contact me directly if you want more info on packaged foods available in stores or websites for ordering packaged food on-line, etc...

Hi, my name is G. and I have a grandson with autism. We tried gluten free for quite a few months along with casein free. He responded well and it did seem to make a difference quickly. In his testing results they found it wasn't wheat but the dairy he was allergic to so we went back on wheat.
Whole Foods in Monterey has so many products now that are gluten free and even a list, I believe.
The limited diet is such a problem for us as well.
We used the bread maker and made bread for him from a number of different flours. There are a number of good books with recipes for kids that are gluten free. We found them on Amazon.com
One thing that he really liked was home made chicken nuggets/strips. We used crushed potato chips or wheat free crackers or rice flour seasoned with garlic and salt. The fry baby came in handy but we switched to baking, always a better option.
It really is worth the trouble and you will need to give it a good try (a couple of months at least).
We ate some of the same foods and didn't eat any of his favorites, no longer allowed, in front of him. It is good that your daughter is younger...the change will be a little easier. Some people have dramatic results. We see a direct behavior and physical reaction when he accidently has dairy now.

We are looking for other families with special needs kids that might like to meet once in a while at a park or somewhere to help foster social intereaction and play. If you might be interested and are in the Monterey Area - go ahead and email me.
May God bless you and your family.
-G.

I have been on a gluten free diet for eleven years. It was very challanging at first when I was learning how to cook and shop for myself but is second nature now. There are some great rice breads out there you can buy at Natural Food Stores. Many stores have entire sections devoted to gluten free items. You must read every label of processed foods you are considering giving your child because wheat is in everything.
There is a great magazine called, Living Without, that is filled with tips and recipes. I would also pick up a few cook books. Your son does not need to feel like he is missing anything with all the available gluten free products on the market. Good luck

H., I am a special Ed teacher who has had students in the classroom with autism. I have two children on the DAN Protocol, (you can look this up on the web) and accroding to their parents it changed their lives. This is one of those things that is going to be hard but you just have to do it. There are lots of foods out there that are gluten free, it will require you to be very creative and cook from scratch alot. But it may be worth a try. Also, give it a chance to work.

Hi H.~

I have Celiac disease, so I am on a gluten free diet for that reason. I will tell you that it was very hard at first, but once I learned that there were a lot of foods out there that I COULD have, it wasn't so bad. Now I would say I am a pro at reading labels. A website I can recommend is glutenfree.com, it is very resourceful. My little cousin who has Autism is on a gluten free diet and we have seen much improvement. Good luck!

E.

My adult daughter recently went on the luten free diet after she found she was allergic to so much food that had it. it is not easy to change but she appears to be doing well on it. She had an allery test to determine what she is allergic too which has helped.

H.,

While I am dealing with a chlid with mild PDD, not autism, I have worked with hundreds (really! Pediatric nursing will do that for you!). I think the gluten free diet isn't the thing that changes most autistic's lives--UNLESS they have celiac disease, which is much more common in autism than it is in the general population, for some reason yet to be determined.

If your child complains of frequent abdominal pain, or has irregular stools, or isn't growing well, I would take him off to a GI doc to be tested. If you want it just as a way to improve his daily functioning, I think the drastic change in routine could be more counter productive than any potential benefits.

Hope it goes well for you.

S.

I have an 18mo dtr allergic to milk, eggs, wheat (gluten), and peanuts. I think you'll be amazed about what's out there. I have found waffles, pretzels, cake mixes, etc. Good website info on FAAN (food allergy and anaphlaxis network) or on celiac disease websites. Just fair warning it's all a little pricey, but obviously worth it. I hope this helps.

Hello. I read your request this morning and my heart went out to you and your family. I am the mother of 4. I have tried the gluten free diet. I was very sick myself for over a year and underwent multilple tests and a few hospital stays. I was asked to go on the gluten free diet by my GI doctor. I did go on it for over a year. My children were tested for 'celiacs disease' which is full blown gluten intolerance. We all do not have celiacs disease, but myself and 2 of my daughters are very gluten sensitive. I found it to be very difficult at first but I was willing to try anything. I would encourage you to try it for your son as well. I found a huge help online when I googled 'celiac disease' or gluten-free diet. Locally Traders Joes has lots of gluten-free foods that are very tasty. The trick is to educate yourself first on what gluten is and then try a few foods at a time. All fruits and vegetables are gluten-free. Peanut butter and honey became a favorite 'sweet paste' for us. Also there are children's gluten-free cookbooks. It is a big world out there and you'd be surprised to find a lot of resources to aid you in this new venture. *As a side note I do know that diet plays a huge role in many disorders and conditions. We have a friend with MS that couldn't get out of bed for a few years. She went on a special diet for MS (very strict) and she is up and functioning today!

You can do it whatever you decide to do!

My son has allergies and it is a bit more expensive and a bit of a pain but definitely do-able....at least you can try it out for a few weeks. Whole Foods and Trader Joe's stock gluten-free pastas, breads, pancakes, waffles and snacks. Take a walk around some day you aren't tight on time before diving in, it's pretty amazing! Whole foods has the snacks and pastas with the regular ones and a special gluten-free freezer/fridge for baked goods. Trader Joe's has the waffles/pancakes in the freezer section and crackers/breads mixed in with the regular ones.

Our family tends to eat rice-based meals so it's typically not too complicated but we give him his own breads, etc. I've tried all of the foods, too. I think TJ's waffles and Enjoy Life chocolate cookies are better than the gluten ones! There are great recipes/websites out there, you can email me for a list of them but I haven't had the time & energy to try more than 1 or 2 of them. All the best!

My now 4 year old son was diagnosed with autism when he was 2. I put him on the gluten free/caisen free diet for almost a year. It was a lot easier than I thought it would be. Whole Foods has a lot of food that is gluten free, and then I had to order a lot on line for the diet, which did get expensive. The other issue you will get into is going out to eat and what to order for him, it is very hard to travel, etc. I took him off to see if I would see a difference or not and I didn't (I didnt' see one when I put him on either thought). The way I looked at it though is it is worth a try, it can't hurt anything. Some of my friends swear by it with their kids. Hope that helps.

The Autism Bio-Medical support group at Parents Helping Parents (www.php.com) has a lot of information about GF-CF diets. It is a really big undertaking and the whole family needs to be involved, but for some it does seem to make a difference in their child's behavior and symptoms. You should also have some guidance from medical/nutritional experts to ensure that through this process your child is getting adequate nutrition.

Hi H.,
I went gluten-free for the month of May last year for one of my doctors (had two Celiac tests, one came back positive, the other negative, and before doing a biopsy test, my doc wanted a trial of me on the diet to see what improved). My son was 12 then and, though he didn't go completely gluten-free with me the entire month, he ate a lot of what I ate -and later did a gluten-free week himself in the fall (w/ me). I have a niece who eats only gluten-free and another niece and nephew and sister who eat 'partially' gluten-free. What I discovered while doing it myself was that there are some very tasty gluten-free foods out there (and some nasty ones). Whole Foods gave me a 19 page handout of the gluten-free foods they sell and I bought mostly at Whole Foods, Trader Joe's, Raley's/Bel Air/Nob Hill, and some at Winco, too. It was expensive, but only because I was new to it. I eat half and half now (have put off the biopsy, but am in love with many of the gluten-free foods now and prefer them --my son, too). I would eat with your son if you can. I don't see any harm in trying it for your son. I have no idea if it will help, but if it doesn't, you've lost nothing. If it does, you've gained something invaluable for your son. One major warning --the pre-made breads almost all taste like crud. I found only one I liked (a Whole Foods bakery biscuit-like burger bun), but it was unbelievably high in calories. If your son is a big bread eater, you'll have to get creative and try some bread mixes and from scratch. I used Pamela's bread mix to make pizza crust and bread sticks and that was second in taste to the caloric biscuity buns (and less calories). My son liked them best (he didn't care for the buns). Pamela's pancake mix is divine and we use it all the time (for all sorts of breakfast foods). It has almond meal in the mix and that's adds an incredible flavor to it (I'd definitely purchase some almond meal to add to homemade bread and baking). If you're going to go truly gluten-free, you have to watch out for everything --even shampoo, lotion, etc. You can get a list of ingredients that are 'hidden' glutens to keep track of this, but know that it will entail more than just buying and fixing gluten-free foods at home. Gluten in non-food products can still get into your son's system and would botch your trial in seeing how removing all gluten helps him. Watch the "minor foods" and sauces, too. Most soy sauces have gluten in them, for instance (but not all). I still think it's worth it on a trial to see if it helps your son, though. And, you will find foods that you'll both (or all) enjoy; you don't need to worry that it will all taste cruddy... only some does. If you have any further questions, feel free to email. I'm no gluten-free expert, but I can list all my favorites and my 'run for the hills' brands from the stores for you. My 'totally gluten-free' niece would be happy to offer any information as well.
Good luck!
M.

My 3 year old son has a gluten allergy. It is very tough to follow but you can find things that everyone will like. Since my son was little when it started and to ofset the cost, I usually end up cooking two dinners. For example, I will make regular pasta for the rest of the family (I also have 2 daughters) and gluten free pasta for my son and then add the same homemade sauce to everyones pasta. This way we are all eating the same thing making it easier on my son and saves my budget some. His preschool has been very helpful and now all the kids know food that my son can and can not have to eat. I am not sure about how it will help your son but I definently think it worth the chance. It's something that can't hurt him. I can offer suggestions for foods if you need any. I agree that all the premade bread are not very good. My mother in law usually makes him homemade. Some of the mixes are better than others. I even found a mix for pancakes that all the kids liked. Good luck!

H.,
A boy in my son's class suffered from severe autism (not sure exactly which aspects). His mom put him on the gluten free diet and he is now a wonderful, happy, interactive kid. She is amazed by the differences. I guess it depends on which "form" of autism the child has, but this litle boy is proof it works.

I've lived with Celiac my whole life and now my daughter has a milk and egg allergy so I feel your kitchen pains! Here are my favorite gluten free brands-
Bread- Kinnikinnick- there tapioca/italian white bread is the best you'll find and it's really great if you microwave it for 30 seconds. I buy through their website.

Pasta- Tinkyada pastas are by far the best and can be found in most grocery stores now.

baking- Sylvan Border Farms general purpose flour combined with a teaspoon xanthum gum to 1 cup flour will allow you to bake 95% of the stuff you normally do and it will taste good.

Pamela's pancake mix- awesome, in most grocery stores.

For breading or crusting things I use cornflake crumbs. They work just like breadcrumbs.

Let me know if you want more tips or products. These are my staples.
A.

Hi H.! I myself have not tried the GFCF diet, but I know some moms who have. (I work at the Swain Center and we see quite a few autistic children.) Most of them agree that once you figure it out, they were able to see changes. Have you looked at the tacanow.website? They have a week-by-week version that allows you to make the changes slowly (and not go crazy doing so. Whatever you decide is best for your son, good luck!

i have had some gluten free foods. it is definately different tasting. you can find some good things, but if hes a picky eater, you might have a hard time.

Hi H.,

I am gluten-free and can telll you it's actually not difficult, it just takes some adapting. There is a really great millet bread I get in the frozen section at our co-op, I'm sure it's at Whole Foods too, and I bake with wonderful grains like amaranth, buckwheat (not a real wheat), brown rice flour, etc. I bake about six batches of scones and freeze them for an easily warmed up snack. They're delicious and low in sugar. There are many options, just look at Whole Foods and online (google gluten-free recipes or companies.) I've read that gluten intolerance hits 1 in a 100 people, but that it isn't widely discussed in the U.S. largely due to wheat being a highly subsidized commodity. Other countries are much more accomodating apparently. Good luck with your son, many challenges ahead I'm sure, but at least he's got a patient and loving mom on his side!

We tried this diet for our son a while back for about 3-4 months. His behavior got worse. I'm sure he's an isolated case though, as I've heard there are many many autistic children what this diet helps behaviors for. We didn't eat all the same things he ate, but I'd try to buy him similar things to what we ate, and if i couldn't find him anything similar I wouldn't buy items.

I have a friend who's grandson is allergic to a lot of different foods and also has a form of autism. She makes a lot of gluten free foods for him. I think it would be a great idea for the whole family to try the diet. It will be hard on your son to be "left out" and be the only one on this diet. As with any diet you will have foods you will miss, but it is a very good diet and could benefit the whole family. There is a book Gluten Free for Dummies and a website Glutensolutions.com. Give these a look and see what you think. I know the foods can be somewhat expensive and you will probably have to try them all to seee what your son likes or not. If you like to cook and have the time to try new recipes out you might have a good time trying everything. I have tried a few of the things my friend has made and they are delicious! She has a recipe for a zuchini cake and sugar cookies that are very good, and I know she has recipes for breads too.

Hi H.,
I have heard good things about the gluten/casien free diet. I do not have autism in my children. I wanted to post a web site you might like to look at: www.mannarelief.org click the hope program. They are a Christian ministry that helps children with medical issues and children in orphanages. My family is involved with fund raising for them as it is our favorite charity. We have friends with children who have been blessed so much by Mannarelif.
~ S.

WE have 2 young kids with food allergies and one is allergic to not only wheat but all grains including rice (breaks out in hives and vomits for hours). So we have had no choice but to go not only gluten-free, but grain-free for him. But i have heard that it can be really healthy for anyone to try. I've always been a bread eater myself but have found it not to be as difficult as i thought to avoid, at least for dinner (we try to all eat the same thing when possible). We eat a lot of potates and quinoa. There are a lot of great recipe books out now on the subject and on the internet. I don't know about the autism-connection but i'm sure there's info out there. Good luck to you and your family.

Hi H.-
I am currently eating that way myself to try to help my son's reflux (I'm nursing). It's a bit difficult to get used to, but well worth it. There are cookie mixes & brownies & other gluten free goodies out there. Whole Foods has some- even Trader Joes has them now. It helps me to have a treat to get thru with out the bread & crackers etc.
HTH & Good Luck

Dear H.,

Have you ever heard of a product called 'MaxGXL'? My friend has an 8 year old son with Autism. He never spoke. Just grunted at best. Anyway, she gave him some Max and within 24 hours he was saying words! Withing 2 days he was saying sentences and now 2 weeks later he's a chatter box!!! She and I both use www.maxgxl.com/maxmagic now to get our MaxGXL from. Also if you're in Redding tonight (Th) there's going to be a free class on Health & Wellness with the guest speaker is Dr. Steven Davis. AND Dr. Davis will be speaking about Autism too.

If you want to know more about this class let me know and I will look for the flyer so I can tell you more.

Hope this helps!
N. :o)

Hi H.,

I did do the glutten free diet with my son when he was young.
He had allergies. Now they have many products in health stores
I brought a bread maker and the bulk ingredients at Whole Foods
You need to start reading labels and add the glutten free food in place of the other gradually. I recommend toasting the bread,my son did do well on this diet. He is now 21 and although eats wheat now he watches how much and knows when he has OD on it, and cuts back.
Lots of good recipes on the internet. Maybe he can help pick some out to try.

Good Luck,
S.