Has anyone tried gluten free diets?

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I can't really answer the question about how long a gluten-free diet takes to measure results - but an enlightened GP/pediatrician or alternatively a doctor of naturopathy (the kind who have been educated like a doctor) could provide that info.

On a side note: I am skeptical about all doctors as I'm not one to be impressed simply by the diploma on the wall, so I have gone to great lenghts to make sure my kids have doctors that I trust implicitly. It's not easy, but it is worth the effort to find a really, really good doctor - the kind that never cuts you off, never belittles your concerns, and is up-to-date with their medical knowledge, and open-minded about alternative medicine. My son's pediatrician completely agrees with the benefits, for example, of fish oil supplements for kids on the spectrum and she advised us to have our son take no less than 2000 micrograms per day, and to wait 3 months before deciding if we saw improvements.

I have heard many anecdotal reports of kids on the spectrum showing great improvement within days or weeks of being off gluten. But I don't know scientifically what the expectation is. For my baby, it was within 2 days that he went right back to being his happy, sleep-through-the-night self.

It is true that gluten free prepared foods cost a small fortune - but it's also true that generally speaking kids don't eat large portions, and they are all foods that can be frozen and thawed in small batches so they don't go bad. I think an adult going GF would be much more costly than kids. It's also true that eliminating gluten can lead to a very healthful diet in other ways - ie, it really forces you to move to a whole foods model. Most of the easy packaged snacks that we have to eliminate because they have gluten, also have tons of refined sugars, artificial flavours and colours, etc.

For our son, the only thing that will be costly is bread & waffles. He has always refused to eat pasta. And the only thing we'll have to get rid of in his diet, is crackers, at least until I find edible GF ones.

We also bought a breadmaker to make our own GF bread but I haven't had the courage to even take it out of its box yet. I'm working my way up to that...

If you have a chance to search for posts by Ouinon and PenguinMom, you will find lots of useful information on gluten and special diets. Ouinon is gluten intolerant herself, and has done a huge amount of research on the issue, and PenguinMom has a daughter who is gluten intolerant. What you will really interesting in PenguinMom's story is that she was first misled by doctors advocating GFCF for the wrong reasons, and has good information on how to make sure the road you are going on is the right one, as a result.

The caution when you are eliminating anything from a child's diet is that it will be replaced by an increased quantity in something else. And if it turns out that something else causes your child issues, you've kind of shot yourself in the foot. So you need a REASON beyond the "so and so thought it might help."

If I remember information Ouinon has posted correctly, approximately 10% of the population is gluten intolerant - across the board. It is no more prevelant with AS, but the side effects may become more noticable with AS. Gluten intolerance can fog the brain and, well, who wouldn't want less fog? It is something you can talk to your child about, how he feels his thinking goes, and look for words that would hint at common negative reactions to gluten. Plus, I believe PenguinMom has posted gluten intolerance CAN be tested for, so you can have a definitive answer before jumping into the water with it.

I tend to strongly caution against going GFCF because parents who do that will naturally increase the intack of soy, and THAT is the one thing WE know our AS child is sensitive to.

Annecdotally, I would say food sensitivities tend to fall as follows:

Most common: Gluten (apparently about 10%)
Second: Dairy (cassien)
Third: Soy

I would say issues are common enough to warrant looking into, but not common enough to jump blindly with.

Sorry for all the typos and spelling errors - this isn't my spellcheck browser. And, well, my spelling has always been horrid.

Better to be fat and happy, than thin and miserable.

I'm gluten free and it's really helped my Gastrointestinal issues. It's also helped my little boy. I hope that you understand biomedical doesn't change you or your child at the core but helps them not be in pain. I'm happy to say that I'm not in pain anymore and feel better. I am seeing a Dan doctor and have really been seeing some nice gains in unexpected areas. However despite 1 year or so of biomedical intervention I still got diagnosed with AS this month. The difference is now I don't have diarrhea, constipation, bloody stools, painful skin, terrible skin rashes, and I'm on anxiety medicine. I feel better and thus my social skills are a bit better and I'm more interested in being social and trying new things. She's addressed all kinds of issues with me including anxiety and has sent me to an immunologist. She's been very proactive in making sure I get the medical care I need. I honestly think if you have GI issues that you should give it a try oh and she ran a bunch of blood tests first to make sure it was necessary. I tested positive for Celiacs plus soy and dairy intolerance. So did my son.

First let me apologize, I spilled tea on the compter, so some lettes don't wok.
Please read my blog to see what our expience was like, you can lean a lot fom our mistakes.
1) special diets will not work for everyone.
2) fisrt step is to make a food log. for 2 weeks docment everything your child eats, and any behavior and/or physical changes that you think are related to food.
3) If, after 2 weeks you look at the log and it supports that there is a realation between health/behavior/and food, start making doctors appointments. You can get a simple celiac test at your pediatician. They will take a lot of blood for this. DO NOT go off gluten before getting the celiac test. You will need to go back on it to take the test, which is painful. Also make an appointment with a pediatic gastoenteologist. There will be a long wait for the gastoenteologist, you can always cancel the appt if you don't need it.
4) If the celiac test shows negative, but the food log looks like there is a relationship then it could be non-celiac gluten intolerance, which can be serious. This is why you have the appt with the gastoenteologist lined up.
5) Go off gluten totally. After 3 weeks off do a double blind test to see if child reacts to gluten (or whatever food is indicated according to food log).
In a double blind test choose 3 weeks in which to document symptoms. For each of these 3 weeks have someone other than yourself give the child 1 gluten (or non gluten) snack each day. Only have them give the gluten snack 1ce per test week. The peson docmenting reactions can not know if the snack is gluten or not. Docment everything and see if symptom log matches when child was given gluten (or other suspect food).
) Our gastoenteologist gave 3 seperate types of celiac tests. One of the tests was to look fo an enzyme produced by the body in response to gluten. In celiac people there is too much of this enzyme, which is what damages the intestine. My daghter produced the enzme at a level far higher than a nomal person, but slightly too low to be labeled celiac. Hence, she is, proven by this test, and the double blind tests, and the food logs, to be non-celiac gluten intolerant.

I hope this helps.
Again, I must apologize fo the missing letters.

{edit to include missing letters}

I've not read this entire thread. But as someone who has AS, and who had gastro problems that developed in college, I notice a HUGE difference in my mood and behavior when I eat gluten-free. I am not as irritable, and I am not as depressed. That's not to say I don't get sad when I'm GF, however. I have read that as many as 90% of the women with AS have gastro issues.

I do have a known food intolerance. My brother never showed up on the blood test, but he also gets bowel problems if he eats gluten.

Going GF is hard, though -- the first 4-6 days especially. It's as if the body is going through a withdrawal. You may find some of the information on the paleo diet or specific carbohydrate diet interesting. (They're the same thing, different names.)

Just to add a bit more, now that I have a working keyboard. I have seen food do some strange things. You feed your child every day and you witness how your child reacts. If you suspect that something is up then go with your instinct, if you suspect something is bogus, also go with your instinct. An accurate food log should help you identify what the culprit is.

Be sure to find doctors that you can trust. It is worth the wait (even if you have to wait 6-8 months for the appointment.)

If you do not think special diets are applicable in your own case there is no need to feel guilty about not trying them. Keeping the food log, having the blood drawn, and going to a different specialist every two weeks is a lot to put a child/family through.

Just about my daughter, her sensory issues center around food, tastes, textures, etc. Gluten gives food a very specific textures, which is a texture she loves. She would crave gluten even in things like miso soup and malt vinegar, where most people would not be able to detect the texture of gluten. It is hard for a child to understand that the food they are eating could be giving them headaches/stomachaches/nightmares etc. To a child it's more like I feel sick, I want comfort, give me the comfort food I crave. The more gluten she ate - the sicker she felt - the sicker she felt the more she craved comfort foods - the more comfort food she ate the more gluten she ate - you see the pattern. If you see the same pattern in your child then special diets may be worth trying.

are blood allergy tests sufficient enough to detect gluten/casein sensitivities?