Confused on the Gluten Free, Casein Free diet.

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NathansMommy
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23 Apr 2010, 2:35 pm

I have had people suggest trying the gluten free diet to see if it helps my son any with his behavior. I understand how the diet works, what food are ok/not ok, etc, but my confusion lies elsewhere. From my understanding, quite often, persons with autism will have GI/Digestion issues and once gluten and/or casein is removed from their diet, they can make leaps and bounds in improvement. My son is soon to be 4 years old and is on the high functioning/asperger's end of the spectrum. He is very healthy and has no known food or medication allergies, and no digestive issues. My questions is, when people talk about the benefits of the GF/CF Diet in reference to autistics, does this only apply to those who also have other physical/medical/digestive problems? I wouldn't want to drastically change my boy's diet without knowing if it is even worth trying in his case.

...On that note, has anyone tried the GF/CF diet for there children? Any luck? :?:



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23 Apr 2010, 3:14 pm

NathansMommy wrote:
I have had people suggest trying the gluten free diet to see if it helps my son any with his behavior. I understand how the diet works, what food are ok/not ok, etc, but my confusion lies elsewhere. From my understanding, quite often, persons with autism will have GI/Digestion issues and once gluten and/or casein is removed from their diet, they can make leaps and bounds in improvement. My son is soon to be 4 years old and is on the high functioning/asperger's end of the spectrum. He is very healthy and has no known food or medication allergies, and no digestive issues. My questions is, when people talk about the benefits of the GF/CF Diet in reference to autistics, does this only apply to those who also have other physical/medical/digestive problems? I wouldn't want to drastically change my boy's diet without knowing if it is even worth trying in his case.

...On that note, has anyone tried the GF/CF diet for there children? Any luck? :?:


In general, if it is going to help, there will be some clue. Extreme moodiness, gas, constipation ... Too many parents have bought into the diet hook, line and sinker and lived to be disappointed that it didn't do a thing. Another fraction believes it did something it didn't, because their child happened to take a leap around the same time. The person here to give you the best guidelines will be PenguinMom, as her daughter is genuinely gluten sensitive, and she tried GF/CF before that. You can probably do a search for her posts; she has one where she lays out the considerations and process really nicely.

Also, what has become apparent from the high functioning adults who have tried the diet on themselves, is that needing to eliminate both GF and CF to get results is really rare. We have seen a good number of people who are gluten sensitive, and who have found going gluten fee to benefit. Less frequent is cassien or milk sensitivity, although it does happen. After that is probably soy - which is why you don't want to go CF unless you KNOW cassien is an issue; most often, cassien products are replaced with soy. My husband and son are both sensitive to soy, so going CF would actually make things worse.

If you have a high end child that communicates, talk to him about it. He might be willing to experiment with you, one item at a time, in order to ease issues he sees in himself (perhaps focusing, or doing well at school). Or he might be perfectly happy with the way he is, and prefer not to experiment. That should be OK, too.


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23 Apr 2010, 4:03 pm

Hi
You can read my blog, I think you find it by clicking on my screen-name. I wrote out a pretty detailed list of what to do if you are considering the diet. Please be aware I am just a mom, not a medical expert, and take all my advice with that added grain of salt. If you want to spend some time reading all the shenanigans we had to go through before figuring out what was up with my daughter you can read the whole blog.
Good luck.



eb31
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23 Apr 2010, 4:33 pm

I have tried the GF diet on myself and my children, with mostly CF too. My youngest, who I suspect is somewhere on the spectrum, improved her attitude and bowel habits. I had both my children tested for a gluten panel and both of them were normal (as in not allergic). Since I did see changes in them, however, I have decided to keep our home GF and they can eat as they like when we are out or at a friend's home. It seems to work that way.



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27 Apr 2010, 4:08 pm

Our developmental pediatrician said that it mainly works for children that have bowel issues. Since my son really doesn't have any bowel issues, and he eats very well, I did not want to fool with it. My son continues to improve with therapy and school, so I really don't think I will do it. I do try to limit snacks filled with gluten or sugar, and give him lots of fresh fruit as snacks.



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28 Apr 2010, 12:33 pm

I just try to avoid processed foods. My 7 year old Aspie is picky. He loves milk which he ALWAYS refers to as "cold white milk" just like when he tells me to make his toast on setting 2 (hes so funny). The only meat he will eat is lunch meat and sausage & hot dogs (we buy only nitrate free). He will also eat chicken nuggets ONLY if they are shaped like dinosaurs. He does eat lots of fruit and vegies and also pasta. The trick, especially if they are picky is just trying to find a balance and a health one.
As far as Im concerned you should only omit milk if there is an allergy and only omit gluten if he has Celiac disease. These people make WAY too much money on all this gluten free crap....People with Celiac disease should not eat gluten, has nothing to do with Autism unless Celiac is also present. If he is having intestinal problems have him tested, its a simple blood test.
Curse me out if you might....dont care. I am very against biomedical, diet, chelation, cure horse hockey...its just people trying to make money off of parents with autistic kids. If you have to pay out thousands of dollars its more than likely a scam....get your kid therapy, early intervention is important. If you dont have a Regional Center call Easter Seals. Therapy works....I had a 3 year old who would not respond to her name, spent hours spinning in circles, obsessively line toys, and would bash her head into the floor due to her frustration of not being able to speak. I now have a very happy 5 year old who can speak (no not like a NT 5 year old but she is able to make some requests). She attends school, plays dress up and even has a little friend. This because of therapy 4 times a week and a specialized autism program at school and I got this all for free.....this works, dont throw your money away you need it so you can put a swing in your living room and maybe buy a little trampoline and lots of shaving cream (helps with sensory regulation and cleans your floor all at the same time) LOL :). Anyway, Ill stop with my rant now.



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28 Apr 2010, 4:03 pm

My son has been GF/CF for four years now and is old enough to cheat if he wants to. He doesn't. We tried it out of desperation as teachers were telling me they couldn't teach my son and they didn't know what to do with him. They were at their wits end and I was at mine. A friend who is a dietician suggested the diet and I thought, what could it hurt.

My personal theory is that my son does better on than off because he has a more varied diet when he is gf/cf. Off the diet all he ate was "white" foods (cheese, bread, potatoes, chicken, etc.). Now it's fruits, veggies, seriously he will willingly try just about anything I put on his plate - no begging, no bribing, nothing. That doesn't mean he loves everything, but he does try it.

He also no longer has migraines or gets eczema so bad that he has open sores (both of which would happen periodically before the diet).

I work in human services and I know the science behind the diet is sketchy and placebo effect runs high. So we did this without telling many people in his life. A few months in and club directors, teachers, parents of friends all asked if we were doing something different because he seem so much more engaged. It was amazing and clearly not all in my head. He went off it once briefly and did not like the way he felt and went back on by choice. If he says he thinks more clearly on the diet then I'll do the diet.

He has been lactose intolerant since he was a baby so the no milk thing would have been a part of his life anyway. And I have never been a fan how much over processed white flour is a part of just about every food. So this was an easy leap for us. I've always been a big believer in having my kids read labels and make informed decisions about what they are going to put in their mouth.

I won't say it's not a challenge at times. But for us at least it is totally worth it!



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28 Apr 2010, 5:53 pm

Just FYI, it is possible to go gluten free without spending extra money; it only takes extra money if you want to buy gluten free crackers, cookies, waffles, breads and the like. Serve your child a diet of fresh veggies, nuts, cheese and meats and, guess what? You're gluten free.

Yes, there are a ton of people out there trying to make money off the concept, but it would never have gotten the traction in this community it has (which is still limited) if people hadn't figured out that they didn't need any DAN! doctors or special recipes.


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28 Apr 2010, 6:05 pm

NathansMommy wrote:
I have had people suggest trying the gluten free diet to see if it helps my son any with his behavior. I understand how the diet works, what food are ok/not ok, etc, but my confusion lies elsewhere. From my understanding, quite often, persons with autism will have GI/Digestion issues and once gluten and/or casein is removed from their diet, they can make leaps and bounds in improvement. My son is soon to be 4 years old and is on the high functioning/asperger's end of the spectrum. He is very healthy and has no known food or medication allergies, and no digestive issues. My questions is, when people talk about the benefits of the GF/CF Diet in reference to autistics, does this only apply to those who also have other physical/medical/digestive problems? I wouldn't want to drastically change my boy's diet without knowing if it is even worth trying in his case.

...On that note, has anyone tried the GF/CF diet for there children? Any luck? :?:


There is a high incidence of insufficient digetive enzymes in the ASD population. It is thought that there could possibly be some kind of causative relationship between this and ASDs, but that is just speculation. Artificial flavors and colors take a lot of extra digestive enzymes to break down and should be avoided by anyone with digestion issues, and aren't great for anybody. Gluten and casein form opiate like substances that are known to leak through a compromized gut lining and are known to get into the brain. Removing artificial flavors and colors along with gluten and casein will help the gut heal. Often people can go back to eating all of some of the things, possibly in moderation or without limits after their gut is healed. Artificial stuff should probably be avoided altogether but occasional lapses are probably OK for most people after the initial healing stage. Casein only takes about six weeks to clear from the system but gluten takes at least a year.

My kids are all high functioning and we've done it with all of them. We also cut out certain produce, high in phalenes. Little guy has always had pronounced black bags under his eyes. We've gotten many notes of concern about them from teachers, they are that pronounced. They disappeared rapidly on the diet. He was my first child to go back off the diet and the black circles are still gone. Middle son has always had trouble controling his bowels and is very very small for his age. He's had all kinds of nutrition work ups but they've never found out why he doesn't grow well. On this diet he didn't increase intake or calories but as his gut began to heal he began to gain weight and appears to be growing. He is now back on casein, but still nothing artificial and no gluten. Eldest son has the most pronounced autism symptoms including problems with visual data. Getting him to stay on the diet has been impossible. He sneaks food at school and at home. We've seen no improvement in him, but are going to give up for now as we have bigger battles to face with him...like puberty.

I like "The Child Friendly ADHD and Autism Cookbook." It has a lot of good information and recipes. If you read through the introductory chapters you can check out the different profiles of people who are helped by the diet and why it works for various situations. Maybe you'll find a reason to try it, or maybe you won't.

Kiley



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28 Apr 2010, 9:18 pm

My daughter has both Aspergers and Non-Celiac Gluten Intolerance.

Having Aspergers means that she has problems expressing herself, particularly when she is uncomfortable physically or emotionally. It also means that she has sensory issues, which in her case are most apparent in tastes and textures of food. From the time she was an infant she would seek out and crave the texture of gluten foods (including things like miso and malt vinegar which normal people wouldn't know had gluten).
Having gluten intolerance means that gluten makes her sick. She always had a bloated belly, runny nose, dark circles under her eyes, loose/diarrhea stools, little to no bowel control, problems sleeping, as she got older she developed head banging, screaming tantrums and would complain that her toys (butterflies) were screaming at her. - These are evidence of migraines.

In her case the two diagnoses worked together to confuse my understanding of what was going on. She felt sick so she craved comfort foods. The comfort foods she craved contained gluten. The more gluten she ate the sicker she felt.

I knew that her problems were due to foods, but it took a long time for her to get sick enought that the pediatrician saw what I saw. I got a lot of " you worry to much." The healthier I tried to cook (I baked everything from scratch whole wheat,wheat germ, oatmeal, spelt, etc.) The more gluten she ate. The more gluten she ate the sicker she got.

I believe that there are people with food intolerances. I believe that for some parents (particularly parents like myself who were unable to breast feed) it is hard to identify symptoms of some intolerances.

I believe children with sensory related issues who are limited in their abilities to express themselves are difficult to identify food intolerances in. A child who had gluten intolerance, such as my daughter, but did not have the sensory issues would naturally not eat gluten because he/she would rather not feel sick. My daughter clearly cares more about the texture of the food than how it makes her feel.

For children with this overlap, these dual diagnosis, elimination diets can do much good. The diets will not work for all children. The foods are not the root cause of the specturm disorders. However, when a person feels sick that person can not function to full potential and some foods make some children feel sick.

You do not need to see a DAN! or Holistic practitioner if you suspect this is the case with your child. You can see regular (accepts insurance) allergists, gastroenterologists, nutritionists, psychologists, pediatricians. Be wary of people who do not accept insurance.

Before starting any elimination diet I would suggets making a detailed food log for at least two weeks. The food log should give you an idea of which foods are likely culprits (or if foods have nothing at all to do with things.)

If you want to try gluten free then have your child tested for Celiac disease before going gluten free. You have to be eating gluten in order to take the Celiac test. We took my daughter off and had her off gluten for several months, then we had to put her back on gluten for one month so she could take the Celiac test. Going back onto gluten after being off it her negative response was far more pronounced. (Projectile diarrhea - headache so bad she couldn't even think and told me the next day Ursula the sea witch had stolen her words)

If you plan on making changes in your childs diet then please do so with medical advice (from pediatrician or nutritionist, or dietician whoever you trust most.) Managing the diet and providing the right suplements can be a little complicated. Groceries do not have to cost more than normal groceries, but shopping and meal planning may take a bit longer.



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28 Apr 2010, 10:32 pm

DW_a_mom wrote:
Just FYI, it is possible to go gluten free without spending extra money; it only takes extra money if you want to buy gluten free crackers, cookies, waffles, breads and the like. Serve your child a diet of fresh veggies, nuts, cheese and meats and, guess what? You're gluten free.

Yes. And you only have to drop the cheese to be casein free too.



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29 Apr 2010, 12:23 am

Ok I spoke about the diet elsewhere here. I'm not sure why when it comes to diet there are such passionate (and mostly negative) reviews. Diets are difficult but I figured it would be the first thing you tried before putting someone on medication. Anyway that's a whole other rant. Below is a link to a question I had, after contemplating whether or not the success I achieved with the diet was worth the loss of my "abilities" as an aspie. I went on in that thread to describe how to do the diet correctly, at least in a way that worked for me. This is all opinion, and I am 100% certain the diet works. It does.

The problem is in getting someone like a small child to maintain the diet. One slip up for me causes about a week and a half of pain and mental fog. All my symptoms would return and even amplify. So I can see how some children could see no success with it if they're asking for friends treats in the school lunch room. (The diet does leave you craving those things for a while before you get used to it.)

Eventually with 100% effort it will work. You have to remove ALL of the things though. Gluten/Casein/Soy/Egg/Vinegar. (Vinegar was always one thing that haunted me in all of my sauces like mayo etc.. You would be surprised what they put it in.)

Is that uncomfortable? Is it sounding difficult? It is. But the benefits cannot be put into words.

Enjoy.

Does The Diet Make You Feel "Dead," Too?


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DW_a_mom
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29 Apr 2010, 2:03 pm

Sekkave, I always welcome the opinion of those who have tried this on themselves.

Unscientific reading over time shows me that there are at least as many out there who tried it and found it to do nothing, as those who fell in love with it like you did. None of which creates a perfect road map for parents, but I do agree that I prefer trying the diet to trying medication, if things have come to that point in a family.

I knew soy could be a problem but wasn't aware of the eggs and vinegar, so thanks for that info.

Since my son is already 12, and overall doing pretty well, I put the option in front of him a while back and am leaving it for him to decide. But, not every parent has that luxury, and I don't envy them having to make these decisions without any definitive scientific information. Your experience helps show all the sides, and that is important to this thread.

I like to think this community provides the most uniquely balanced information out there. Which actually makes the final decision more difficult, but also more informed.


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29 Apr 2010, 5:41 pm

DW_a_mom wrote:
Sekkave, I always welcome the opinion of those who have tried this on themselves.


I knew soy could be a problem but wasn't aware of the eggs and vinegar, so thanks for that info.I like to think this community provides the most uniquely balanced information out there. Which actually makes the final decision more difficult, but also more informed.


A person can be intolerant, or allergic, to anything. The six most common ones, in no particular order, are Eggs, Soy, Dairy (Casein), Wheat (gluten), Peanuts (and other tree nuts), and Corn.

People can also be sensitive, or intolerant to chemicals. Many people are familiar with this as they get headaches from perfumes and other smelly things. Food is made up of a complex assortment of chemicals. The Feingold diet, for example, believes learning disabilites are related to an intolerance to nitraites, preservatives, and phenols (color compounds) found in food. Many people also believe they could be intolerant of salycilates, which are found in all red foods and in most foods having strong colors and tastes. It is virutally impossible to elliminate all salycilates from a diet.

Some vinegars do contain gluten. People also elliminate vinegar as part of an anti-candida, or yeast free diet.

The complexity of it all is what makes it so difficult for parents to figure out. It can be difficult to figure out just which food is doing what (or if it is even food related at all).

As always, let me conclude by saying I am NOT a doctor. If you think special diets may be right for you or your child please seek the advice of a doctor.



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30 Apr 2010, 2:52 pm

I think you should be really cautious about the gluten free diet thing. It is NOT a universal, and when it exists there are pre-existing digestive issues.

For me my digestive issues I found out were related to a bell pepper allergy, my parents used it heavily in cooking, and it was discovered the only nights i got sick where nights where green peppers were involved. So even digestive issues are tricky, it is not always what people think.

If there is no issues with digestion, no indication, my advice is to avoid it, because if there is not a gluten allergy, it can cause as many problems in general. I think that you need to approach it with a healthy dose of skepticism, if he is in the higher functioning category and does not have digestive issues, I would avoid it.


Unless there is an identifiable gluten allergy, avoid the no gluten diet thing.