Has anyone tried the Gluten and casein free diets?

Emilio - posted on 10/01/2012

I'm 57 years old and I suffer from Asperger syndrome. I found the gluten-casein-free diet for about 8 years ago. My behavior has changed. All the people who know me say that. (from Brazil).

User - posted on 05/06/2012

kevin was fully potty trained at two and a half, after his shot and series of antibiotics and a siezure he stopped potty training, he started to spit on the floor and at three could not ride his tricycle. He got the worse vocal eye and head roll tics when we bought a dog. in just two weeks after the dog kev would not answer to his name. we rushed him to a doctor in poughkepsie ny. bambini ped. he is an intergrative ped md. takes health insurance. kev is four months on his diet his tics and stims running in circle were the cause of tv and computers not just diet. so today kev is in main stream preschool and the teacher said do you know kevin not only answers all the time to his name, but when I said his name for attendence he answered! he stays in the group, he does not spit on the floor ever. and he is potty trained even at night! and he speeds on that tricylce never even had an ot for help yet. his eye tics eye darts and head rolls left when the dog left. he is tic free for most of the days unless he watched tv or a computer show unfort. so that all had to go for the tics and that awful stim he used to do , to go. most tv creates hand flaps and stims in kids on the spectrum it did for kev. I gave it all up, and he is doing great. aspergers is not a autistic kid. it is a kid that has autistic traits during the day, the diet no sugar only fruit in place of sugar. elimination diet no gluten wheat corn diary or soy, and no technology and he is doing great. bambini ped has a high rate of recovery for autistic children, aspergers kids and all ahdd and all nero disorders. the practice does biomedical as well as mainstream medicine. kev is on no medicine and has more bio med intervention to do. god bless

Gabriella - posted on 01/12/2009

oh what probiotic? Just watch that many of them actually have dairy strains. Many have strep strains in them too so if your child has any issues with strep, OCD behavior and especially PANDAS then you have to avoid the ones with strep at all costs. The Klaire probiotic has neither dairy or strep. I don't think we have strep issues and we don't have pandas so we take pro bio gold from kirkmans. To be truly effective they need at least 45million per day so we take 3 pills before bed

Gabriella - posted on 01/12/2009

oh and there is a MB12 yahoo group too. They are awesome. run by generation rescue actually.



mb12valtrex@yahoogroups.com

Gabriella - posted on 01/12/2009

Lots of our kids don't do the proper methylzation process and without that, they are not making the essential antioxidant only produced by our bodies, glutathionine.



so are you doing the MB12 Shots? Are you doing DMG with Folinate or one of the other forms of folate? I have heard the most amazing things about starting all of that. Lots of kids really start talking and communicating really quickly and much much more adeptly. We are going to start with DMG and then move onto to the MB12 shots but that is after the antivirals -- one for measles and one for herpes - lots of our kids have very high markers for both.

Katy - posted on 01/12/2009

I also had a vitamin test done that showed that my son can't metabylize B12 and other important vitamins as well so we are now supplementing him with those too in the metabylized form.

Katy - posted on 01/12/2009

Thanks for the info.  We are introducing dairy back into the diet until his gut has been healed but I am hopeful that he will take to dairy once this has been done.  :)  I had both the IgG and IgE tessting done as well as a nuerotransmitter test that revealed so much info about his mood swings.  We are in the process of testing him for toxic yeast in the gut to see if we need to kill it off.  He just started a probiotic last week and is beginning a customized vitamin compound this week.  Our DAN doctor is amazing and I feel so blessed to have found her.  :) 

Gabriella - posted on 01/12/2009

Katy - they say taht even if OATS and Peptides come back okay for one of the two ie gluten or casein that you should still keep it out bc until the gut is healed then it still falls through - ie leaks through the gut and can still be read as an opiate bc it has the same basic weight as casein and soy. Did you have IGG and/or IGE testing done for those food allergies? We are going to do that soonish -- after we do antibiotics for a parasite, anti virals and of course rounds of diflucan to kill yeast and probably some of the naturals to keep yeast at bay

Katy - posted on 01/12/2009

The diet has worked wonders for my 2 year old son with ASD.  I did recently have a battery of food allergy testing done and it came back that he may not be allergic to Casein but "highly" allergic to Gluten so I plan on slowly reintroducing dairy back into his diet and stay alert for changes in behavior.  I would recommend you getting in contact with a DAN doctor and having food allergy testing done.  It really helps you to know other possible foods that are are contributing to his ASD.  You can find a DAN doctor in you area by visiting www.generationrescue.com.  

Katy - posted on 01/12/2009

The diet has worked wonders for my 2 year old son with ASD.  I did recently have a battery of food allergy testing done and it came back that he may not be allergic to Casein but "highly" allergic to Gluten so I plan on slowly reintroducing dairy back into his diet and stay alert for changes in behavior.  I would recommend you getting in contact with a DAN doctor and having food allergy testing done.  It really helps you to know other possible foods that are are contributing to his ASD.  You can find a DAN doctor in you area by visiting www.generationrescue.com.  

Janette - posted on 01/11/2009

DAN stands for Defeat Autism Now

Our DAN Doctor is in Lynchburg Virginia, her name is Elizabrth Mumper, we jus love her.



It s true this diet does not work for eveyone, I have only met one child that this diet did not help, but the many others I've met it has made life altering changes in.

Paulette - posted on 01/11/2009

Hi Lynn, The following is what another mom her on the circle of mom had sent me to explain a DAN doctor and some websites too:  My favorite books on biomedical intervention are "Children with Starving Brains" by Dr. Jacquelyn McCandless, and "Changing the Course of Autism" by Jepson - both are DAN Doctors. The DAN movement was started by by a scientist years ago, Bernard Rimland, the father of a boy with autism in the 50's - there was no treatment available, yet he had extensive medical knowlege from his scientific training, and was not willing to accept the "we just don't know" or "there is no known cause nor cure for autism" answers. He recruited a team of doctors to dig deeper, use scientific methodology to come up with treatments to help kids with autism. No two kids are the same, and all children cannot be treated with the same methods. But they did find many subsets, many commonalities. A DAN doctor will have the parent fill out a lengthy questionaire to get a clear picture of the patient (poops, color, smell, consistency, frequency, sleep, night awakenings, food, behaviors, urine, color, smell, frequency, skin description, rashes, flushed checks, red ears, dark eye circles, diet preferences, etc, etc, etc,). Based on the answers received, the DAN will order testing (poop, urine, blood). Testing results will guide the doctor as to treatments needed, to address metal toxicity, food allergies/intolerance, yeast overgrowth, bacterial infestation, constipation, vitamin/mineral deficiencies, and so forth.

A few places to start for more info on DAN:

FINDING A DAN DOCTOR: http://www.autism.com/dan/danusdis.htm (It is recommended to interview at least two, and obtain parent recommendations).

CHOOSING A DAN DOCTOR: SAMPLE QUESTIONS TO ASK: http://www.autism.com/dan/ques2ask.htm

DAN links: http://www.autism.com/treatable/index.ht...

Autism Research Institute (ARI) – Main site: http://www.autism.com
I hope this helps you in your quest. It is a lot of work but well worth it. One helped my son talk a lot better for one. Have a good day.

Lynn - posted on 01/11/2009

I've heard a few of you refer to a dan doctor, but what does that stand for?

Gabriella - posted on 01/10/2009

Lynn - then you were talking to a normal pediactrician or GE or neurologist. They know nothing about how effective this diet is. You need to see a DAN doctor for any real help. You can also get some doctors to order important tests for you like the organic acid tests or peptide tests from Great Plains Labratories -- actually go to their websites and they have lots and lots of information on how to go about testing without a dan if you can't get in to see one. then go from there on other testing. you should also get a full blood work on measle titers, other virals and parasites. bc As I have said before, the diet is just the beginning and then you go on from there to heal these damaged guts that our children with ASD and aspergers have.

Lynn - posted on 01/10/2009

Sure, any recepies would be greatly appreciated...if you can send them to lex101@live.ca that would be great....thanks again everyone for any info you gave!

Katey - posted on 01/10/2009

I was diagnosed with Coeliacs disease about 3 years ago now, and my son was actually diagnosed as Coeliacs mid last year. He has been on the Gluten free diet since then, and he is a changed boy. He concentrates more, is alot calmer, his interactions are more personal - the results are amazing.

I have actually seen results from a few studies that have been done into the Gluten and Casien free diet and the results are up around 80% positive outcomes.

I would recommend trying the diet before drugs, there is no need to pump our special ones with even more chemicals.



I have found making his food myself from scratch is alot cheaper - although more tme consuming - but you know exactly what is going into your childs system this way.

I can send you some recipes if you like.

K. Lynne - posted on 01/10/2009

THE RESULTS FOR OUR CHILD HAVE BEEN AMAZING. It is not easy to get used to because gluten and casein are in everything. Though his echolalia, stimming and trouble with transitions have only been improved somewhat, his appetite, willingness to try new foods, toileting and sleeping HAVE approached that of his neurotypical peers.

No kidding. He was toileting every 5-7 days, holding it et al. Not sleeping. Eating white bread and milk. After the diet, he is eating a wide variety of foods, toileting  everyday, as needed, unassisted and sleeping DEEPLY and soundly for 8-10 hours at a go.

Just try it and see what happens. She'll need 30 days minimum to see a difference. AN EXCELLENT BOOK IS by Carol Fenster, PhD 'Gluten Free, Quick and Easy' at http://www.amazon.com/000-Gluten-Free-Re...

The food is easy and tastes as close to mainstream, especially the sweets. Good luck!!

Paulette - posted on 01/10/2009

Hi Lynn,  Which diet are you looking to try? If I were you I would try the diet anyhow. Doctors do know a lot but as parents we know our child the best. It sounds like the doctor did not think bad of the diet itself but did not believe it would have an affect. As parents we try everything we possible can to make our childrens lifes the best.

Here are some websites I have come accross: glutenfreemama.com, amazon.com/milk-free-egg-free-nut-free and talkingaboutcuringautism.org/gfcf-diet.com. Put www. in front of each of these website addresses. The first one is from a circle of mom-mother and she has recipes that could help.

Lynn - posted on 01/10/2009

Well I have been having a hard time finding food but I was also wondering if anyone had spoken to their doctors prior starting the diet and if yes, what did they say about it? I spoke to two doctors and both said they didn't think it would make a difference for Grace.....

Bekki - posted on 01/10/2009

i dont want to be a fly in the ointment, im really pleased these diets work for some, but it doesnt work for all. we tried the gluten free diet and really stuck to it but we didnt see any difference at all. one thing i will say though is we got some food through the doctor on perscription, dont know if thats any help?

Gabriella - posted on 01/06/2009

Hi, My name is Gabriella True and I have twin boys, Timmy and Xander. Timmy has autism. We are starting TONS of bio-medical treatments as we speek - starting with going casein free. oh wait - we already started on a gfcf probiotic, cod liver oil and multi-viatmins - let me give links to the ones that most of "us" are on. and a bunch of other stuff while I am at it. First - go to www.tacanow.org - read it all and join the Taca Yahoo Group - they help with EVERYTHING - from biomedical issues to school issues to life issues. great people http://health.groups.yahoo.com/group/tac... We started these first - adding one a week in this order Probiotic - half adult dose two times a day - this is a good onehttp://www.kirkmanlabs.com/ViewProductDe... Cod Liver oil - this is the one recommended by my doc - 1/2 tsp 2x dayhttp://www.kirkmanlabs.com/ViewProductDe...





Multi-Vitamin - super nuthera with A&D is considered to be the best - follow there amount - you can get pills and chewables and powder depending on what is easiesthttp://www.kirkmanlabs.com/ViewProductDe... Now to go GFCF - follow the TACA guidelineshttp://www.talkaboutcuringautism.org/gfc... Then after that there is lots more Most important - these things can make things worse for a short while but that is a good thing - it means that they are releasing toxins, lowering yeast levels, withdrawing from the opiates that gluten and casein are. And attaching these two articles - one is by a fellow mom on the GFCGKids yahoo group Best, Gabriella True

Laura - posted on 01/06/2009

another place for info is the facebook site GFCF diets. It's the one with the profile picture of two chocolate cakes still in the pans. They have some great recipes and also a restaurant guide (we were able to go to Outback without our bag of extra food for our son - it was a great experience). I also ditto every thing Wendi suggested. those cookbooks she mentioned were my best friends when I started out and are what I suggest to everyone thinking about the diet. the only other thing I would say is take it slow. It's a marathon not a sprint. You'll have good days and bad days and your child may be resistant at first but if you do it slowly and add a little here, take away a little there, it will become natural to you all. My son has been on the diet a year and half and has had many gains. it took about 6 months to get completely on the diet but it was well worth the effort. The only other suggestion I would say is to try keeping a diary of the food he eats and his daily behavior. it's a good way to keep track of progress and any other possible triggers (ex. a friend found corn affected her daughter after she noticed her behavior changed the day after foods she had that contained corn)

Wendi - posted on 01/05/2009

This is one of my favorite topics.  I started my son on the diet almost 4 years ago, and I will go you some advice on how to be cost effective as well as how to start the diet. 

1. do your research, become a google-ologist.  www.talkaboutcuringautism.org has an great section on the diet full of links to online stores.

2.  get some cookbooks; my favorite is The Kid-Friendly ADHD & Autims Cookbook (it has a lot of answers to question like what is the diet, why it works, and how to do it.  I also like Special Diets for Special Kids 1 and 2

3.  learn how to substatute ingredents, I can make almost any recipe GF/CF

4. to save $ plan out your meals before you shop and make recipes that you can use ingredients multiple times.  This way you don't go to the store and by lots of random stuff.  I made that mistake and lots of food went to waste.  I spend a day cooking lots of meal and freezing them for later.

I found a company that makes great tasting traditional kid food that are GF/CF.  It's called Ian's, I just bought their Pasta and Pizza kits they also have chicken nugget, fish stick, corn dogs and more.

Make sure that your daughter gets a well rounded meal lots of fruits and veggies.  There are great recipes that help hide them if she doesn't like them.  I make smoothies with avocado in it and my kids never know.

My last piece of advice it not to expect a quick fix.  Every child respondes differently to the diet.  My son gave a little more eye contact at first, but is has been a slow and steady process for him.  Casien (dairy) can usually clear out of the body in 1-2 weeks, but Gluten (wheat) can take up to 6 months sometimes longer to clear out of their bodies. 

Rememeber you not alone in this.  You can email me anytime for help www.andysautism.blogspot.com  I will be posting some of my recipes on it.

Good Luck

Wendi

Julie - posted on 01/05/2009

For spaghetti, my children like Tinkyada brand - any shape. They usually like to eat it plain. It takes a little getting used to, but now I can't stand regular spaghetti. We don't really use bread much. We rely on mostly boring homecooked meals of a plain meat, rice or quinoa, and broccoli or carrots. Snacks are bananas, apples, or homemade cookies. Breakfast is often scrambled eggs, Puffins gf cereal, or homemade 'breakfast cookies'. I would check out special diets for special kids. Also the yahoo group gfcf kids and start looking at gf blogs. I get many of my recipes from gf blogs.

Let me know if you have any other questions.

Janette - posted on 01/05/2009

My son, Timthy has been GF/Cf for 5 years. It has been a great 5 years. The diet is simple if you do it 100%. It is hard as nails of you don't. There is a web site called the gluten free pantry that is great. Most of your health food stores are a big help. Please look for a DAN doctor, they can be very helpful with this approach. There are also some great cookbooks out there to help. The gluten free gourmet bakes bread, Special diets for special kids one and two. Have digestive enzymes on hand if there are any slips. Karen Suroussi has some great literature on the diet. One wordof advice read everyting on the ingredient lables. Tinkyada spegetti is made from brown rice, I served it to my husband and he did not know the difference. Prego has been known to keep its origional sauce gf/cf but again mfg will change recipes and not mark it on the lable except for the ingredients. Good Luck this was a HUGE boost for us and our family. PS there are a LOT of items you can buy at your regular supermarket that are GF/CF.

Janette

Lynn - posted on 01/05/2009

Can you suggest a brand or product? I've just recently heard about this diet and honestly I'm a little overwhelmed at the potential research ahead of me....

Julie - posted on 01/05/2009

The diet changed our lives and now my children are doing better than we ever expected. I would also look on amazon.com. I buy things in bulk from there, but only after trying them once to make sure my kids will eat them. It is definitely worth the effort!

Lynn - posted on 01/04/2009

Big thanks to Consuelo, Jamie and Paulette....I'll be looking into your suggestions....

Paulette - posted on 01/04/2009

Hi Lynn, My son is dairy free (no casein, caseinate, whey or lactose). Dairy for my son makes him irritable and his stools rocks. Off dairy I can see a calmer child and going is a lot easier. Gluten is an issue still...he get a small amount....for a while he could handle a small amount. I am currently about to take him all the way off. To see even better results. A friend of ours told us to watch the use of band-aids...there is gluten in the adhesive. Her son cut himself and she use a band-aid, normal of couse. But he kept wanting them put on and she did some research and found it was in them. She did this because she saw how wound up he was getting. Gluten hypes up some kids up on the spectrum.

Jamie - posted on 01/04/2009

My son is seven and has been on the diet since he was 3. I see a huge difference in behaviour and eye contact when straying from diet. My son's favorite company for food is out of Canada, it is Kinnickinnick. Everything they make has a great taste and texture. Most health food stores can get it for you and you wont get caught with a bunch of shipping fees. I have run our family health food store for 21 years and we do special orders all the time. Just ask the people at your local store and they will most likely be happy to order it for you.

The diet takes alot of trial and error, especially with hidden gluten, mainly found in sweetners. The celiac foundation has a list of things to look for. It took me about a year to be sure I got rid of all gluten, just take it day by day. Mostly dont let it overwhelm you into a panic. Good Luck!

Consuelo - posted on 01/04/2009

You can go online and search GF/CF diets and get lots of ideas for meal planning and recipies to purchasing ready made foods.(very expensive). I have found that Bob's Red Mill makes the best tasting and least expensive mixes. Everything from bread mix, cereal to brownies. I was able to purchase Bob's Red Mill mixes at my local grocery store and actually found them cheaper there than at the health food store. I also read the book by Jenny McCarthy Mother Warriors and it shared a lot about this diet, from a lot of different perspectives. The book was fantastic. I just got it from my local library. I have found that with my son, I started casein free first for a week then went full on GF/ CF. I noticed results within the first week. And measurably positive results that others could see in about a month.

Ivy - posted on 01/04/2009

My 10 year old is on the diet. Since being on th diet, his ticks have gone, he is more attentive, more social and doesn't have any more melt downs. He is also doing much better in school. At the beginning of this Christmas break, we let him have some of his non-diet favorite foods. We definately saw a difference.

Lynn - posted on 01/04/2009

Really? wow where do you purchase your food if you don't mind my asking? I live in a small town in New Brunswick, Canada and I am having a really hard time finding supplies....Also how long did it take before you noticed a positive effect?

Victoria - posted on 01/04/2009

Grandson 12 with Asperger's amazing results from gutein free casein free diet. When we go on a weekend break and let him eat his favorite foods he can tell the difference in his thinking and behavior

Nancy - posted on 01/04/2009

my grandaughter has autism and my daughter has found amazing results with the diet.