Gluten free? Casein free?

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Hello,

I have a lovely, sweet 8 year old son with Asperger's. Overall, he's done very well, but we are having some trouble with his overnight potty habits. Basically, most nights he has a bowel movement in his sleep. Actually, it comes and goes in a cycle, so he'll be fine for several weeks, then the problem returns for several weeks. We have given him some OTC meds to help him go during the day (so he wouldn't need to go at night) but with limited success. He knows he's not supposed to do this but he can't help it. He also sometimes has accidents in the bathtub or doesn't quite make it to the toilet at home. So far, luckily, not at school. I believe it's a sensory problem where either he can't feel the urge to go or he always feels the urge and can't tell when he really does need to go.

His psychologist recently suggested that he might have leaky gut syndrome caused by gluten and/or caesin intolerance. Has anyone else tried a gluten and/or casein free diet? Has it been helpful? I'm interested in all experiences but especially if you've had an issue like ours and were able to relieve it with the diet.

What do I need to know about starting this diet? What do you pack for lunch? Did you start with one, then try the other, then both? Or did you jump in with both, then test one at a time?

Thanks,

*Puts popcorn in microwave*

I use this but for different reasons. It did help with a lot of my AS issues, they did improve although of course they did not go away (that would be impossible).

It did help with "regularity", because previous to that it was always one extreme or the other and it was often unexpected which could make things difficult. A good probiotic can really help with this, as long as you give it to him at the same time every day and make sure he has an hour before he eats food after he takes the tablet.

I guess a couple of things are make sure you go completely gluten free, read every label for both casein and gluten. Sometimes I got cross-contaiminated in the beginning, from using the same toaster or the same colandar etc. Or things as simple as using a jar when someone has left crumbs in there,

Ideas for lunches:

- tortillas or wraps, you can find gluten free ones
- gluten free bread with his favourite spread
- popcorn
- nut -only snack bars (make sure you check the label)
- dinner left overs from the night before
- soups
- smoothies made with coconut milk, almond milk or soy milk
- pasta and sauce (you can make gf /cf versions)
- hard boiled eggs
- curry and rice
- salads
- fruits

I cook basically everything from scratch and therefore take to work left overs or homecooked meals, but you can make cookies, muffins, pizzas, banana bread all gluten free and casein free if you're up for it.

I have kids over my house regularly because I get them out in my garden to give their moms a break. They all eat the mini muffins and other things I make and love them, they don't realise they're gf/cf/sf at all.

This lady does practically all of her cooking gf/cf, so check out her recipes, I know she has entire mealplans in there somewhere, plus lots of other bits and pieces :
http://www.elanaspantry.com/

If you to MomSparky's index (sticky), you'll find lots of threads on diet issues. Not sure I believe in leaky gut syndrom, but I DO believe that digestive issues and food insensitivities are a big issue for many.

FREE THE GLUTENS! Many on the spectrum have intestinal problems, including me. I get more problems from over processed junk white flower than from whole wheat flower, but I do have a bigger problem with barley. This is a bummer because I like the taste of cooked barley. I have made it up and eaten it like rice. Unfortunately, I pay for it in the bathroom. Gas, bloating, and diarrhea. I am considering cutting back on gluten products. I also have problems with casein. It causes a lot of post nasal drip and phlegm, and also a lot of ear wax.--Yes, these are among the possible side effects of casein. The post nasal drip and phlegm make me have to blow my nose a lot, and also cause a lot of coughing. When I run out of cheese for a few days, the symptoms decline. Unfortunately, I don't know how to fix this as I am a cheese-aholic, and don't plan on giving it up. I get most of my calcium this way. I tried calcium pills, but they irritated my intestines, and caused constipation. I am not much of a milk drinker, and seldom buy it. I sometimes buy soy milk that can be left on a shelf until I feel like having it. I've tried vegetarian cheeseless cheeses, but they don't really taste like cheese, so why bother? Also, some of them use casein as a flavoring ingredient, so that's not a help anyway. At least with products containing flour, there are gluten free ones available out there, and I can make my own at home if I want.

For the record, I have had IBS all my life. Part of it is probably food related, part of it is caused by a kink in my bowel, and part of it is probably just because I am an Aspie. I suspected I had a kink in my bowel for decades, and when I finally had a colonoscopy several years ago, this was confirmed.

I have a problem with beans, too. They give me diarrhea. I never used to eat them because they don't really taste edible to me, but a year or so ago, I found I could get them down if I put BBQ sauce on them. I had several reasons for wanting to add them to my pantry in spite of not liking them. They are cheap, don't need to be refrigerated until the can is opened, are quick and easy to prepare, are packed with nutrition and fiber, and are low in fat. They are also easy on my stomach, but they are monsters on my intestines.

I did try probiotics, but ended up throwing the bottle out after they caused diarrea each time I took one of the pills. No thanks. I have enough intestinal problems without adding to them on purpose. At least with the beans I can limit when I eat them, but still keep them on hand for when other foods run out.

There is something to it, I and my son have issues regarding it but the diet is too expensive and restrictive for us to stick to. I have a an adult cousin with Asperger's who was getting sick and was ordered by her doctor recently to go gluten and cassien free and it's helped her. Good luck.

Read my blog on here.

Start a food log. Look for a pattern. Try an elimination diet if you suspect an intolerance. Get checked for celiac before going gluten free.

On a personal note, I've learned to be suspicious of people touting Leaky gut. Speak with an allergist or a gastroenterologist if there are food related concerns.

No advice on gf/cf, but have you tried having him sit on the toilet and try to go for a few minutes each night part of his bedtime routine? I scoffed when it was suggested to help my son's constipation, but it helped a lot.

No idea what CF is. I am on a wheat free diet. It makes going out so difficult. I have been told that I should be ok with just a little of gluten.

My family has been gluten free for a while now, and it has helped a lot of things. Maybe if you tried taking one out, then taking the other out also, it might not be so overwhelming. There are so many good gluten free things now, that its not as hard as it used to be.

CF is casein-free (no dairy or whey.)

The major problem I have with the GF/CF diet and leaky gut syndrome is that it seems to be applied with a broad brush and very little evidence of whether it will help a given individual. I would recommend seeing a food allergist and have them set up an elimination diet, as was mentioned before. Going GF/CF can be extremely difficult, as almost everything has either wheat or dairy, especially if your kid is already a picky eater.

I think many kids on the spectrum have co-morbid allergies and more food intolerances than most people, and these can affect both their digestive system and their disposition (I myself am incredibly cranky during mold season) but I think it's better to figure out exactly which foods are causing the problem and not just eliminate foods because they might be causing a problem. In other words, it's entirely possible to be tolerant of casein and intolerant of gluten, or vice-versa, or both, or neither - but it's better to make sure than to go through all you have to do if you're guessing.

That is, of course, my non-medical professional personal opinion FWIW.

I think the caution I want to add as you look down this road is that there is NO generally accepted medical protocol on GFCF or any of the numerous variations you will hear us discuss. Testing is in progress, and some people feel that it is getting clear, but you cannot walk over to 100 doctors and get a consistent opinion. Which leaves a lot of room for abuse and misinformation. Many, many opinions, and little consensus. Which would be why one of the first posters in this thread suggested he would sit back with his popcorn and watch.

That said, I have several friends, not on the spectrum, whose discovery of food sensitivities was literally life changing. This is an emerging area in the NT world just as much in the ASD one.

Finding food issues will not cure a child of ASD, but it will allow them to be their best self, and when they are their best self, everything will get easier.

So what do you do?
1) Read up on the links some of the above members have provided, the ones that have actually been through all this and have figured out what their child should not eat.
2) Note that someone can have a food sensitivity, where it gives them headaches or stomach aches or fuzziness, without having an allergy.
3) Note that the list of triggers goes far beyond glutien and cassien. I have a husband and son who react poorly to soy, and a woman I work with will get 3 days of migranes from any small amount of soy. Eggs, food dyes, and lactose are also common culprits. Just because GFCF gets the press and is trendy, doesn't mean it is the end all for things to look at.
4) Keep a healthy dose of skepticism and trust your instincts.