Celiac Disease

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OccamMD

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Jim,

Shrox's issue is a bit different, I just thought the gluten free diet would possibly help. It can't hurt.

Celiac sprue disease is when the body has an immune response to gliadin and the intestines flatten out.

The diet is accomplished by removing all gluten from your diet. This takes some work in understanding the ingredients in what you eat, when you shop, etc... We do a lot of shopping at the health food store, but it can be done at the grocery store as long as you take the time to review what is OK. The internet has been a boon to us in getting info and a number of GF (gluten free) and GFCF (gluten free & casseine free) food lists exist. We have found most to be reliable.

It's like a miracle when this diet works. You go from all this pain and trouble to nearly instant (month or so) relief. I just had lunch with a gentleman that didn't know he had it until he was 60 and the diet change has helped him a temendous amount. Parents of celiac diagnosed kids may also find that they have had it and never knew it. It is genetic, NOT an allergy, so it isn't so much a surprise that someone up the gene pool has it. My wife's sister struggled with Crone's since she was quite young. We believe she has celiac, but we have a hard time convincing her.

Our son also has a severe allergic reaction (he may outgrow) to milk (casseine). Which I guess is not so out of the ordinary. I was surprised that GFCF food is quite available and labeled as such. Of course we found out our son had the CF problem when we fed him milk in the middle of his celiac weight problem at age 9 months and my wife had to call 911 when she found him sleeping in the crib in his own vomit with his eyes swollen shut and his face swollen as well. But he was breast fed with mother's milk until 15 months with no trouble. God really worked this out and he continued to breast feed.

With respect to your diet I will find the links to lists and post. For some quick information give me a general list of what you like to eat (hamburgers, fries, steaks, veggies, chips, candy, drinks, etc...) and I can give you a quick list of generally available stuff you can get.

By the way, if anyone on this board knows any children with down's syndrome or autism, this diet may help.

Fortunately, Sean is doing great and comes out to the launches and will soon love to watch as much as I do! He has no ill effects from the disease.
 

graylensman

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Occam

post up those links. I was diagnosed with ulcerative colitis about nine months ago. The doc says that its not dietary related- that is, there's no evidence any given food causes problems for all... but in my own unscientific way, have noticed that certain foods cause trouble and certain foods don't. And since you mentioned Crone's in your post (my brother has it too) i'm curious to know more.

thanks!
 

powderburner

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This is interesting stuff.
If you cannot eat wheat, oats, rice(?), etc, what CAN you eat?
Is fruit OK?
 

OccamMD

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The great thing about the diet is that most natural stuff is great. Meat, fruits, and vegetables. If you eat these you are on a gluten free diet (and atkins too for the most part). Its the grains that are a problem.

My son can have breads that are made with corn, rice, or potato flower and he gets chocolate covered donuts too that are great, but they're a $1 each.

Coke and Pepsi are fine (I don't know about diet, I'm not giving Splenda or Aspartame to my 5 year old), as are minute maid juices and all 100% juice products. We had a lot of these when he was 2-4, now we give him a lot of water. He is lacking calcium due to the milk allergy, but we give him Calci-chews and that works out.

Many manufacturers have a number on the box and you just call and ask about gluten, they will most likely know what you are talking about and check it out for you. Also, many of the manufacturer website FAQ's answer the gluten free question as well.

Nabisco and Betty Crocker candies and foods will tell you on the side if the product contains any of the 7 or 8 most common allergens including wheat. If any of their ingredients contain gluten they will list that too. The trick is the gluten is not always obvious. It may be present in natural and artificial colors or flavorings and also in vanilla. These companies know that and will tell you, they'll also send you coupons if you call.

The worst about knowing the content is actually the drug manufacturers, we have trouble making sure they are gluten free, but our son is actually more tolerant than some, so the few times he gets drugs we do our best to make sure that they are gluten free, but its hard to guarantee. If he gets a little gluten we would never know, some kids double over in pain at the ingestion of any of it.

McDonalds and Outback Steakhouse are great. McDonalds is one of the few chain foods that use their oil fryers for their french fries only. So they can guarantee no contamination from breading. We just ask them for a happy meal with fries and a meat patty cooked on a steamed grill w/new utensils. They do it every time, no questions. You have to help them learn not to let the patty touch anything until it is put in the box. But after your local McDonalds learns how, they are great about it. Now that they have apple slices I'm even happier 'cause my kid loves McDonalds, but fries every day can;t be good.

Outback has a gluten free menu. You need to ask for it. By default the best thing to do is ask them to cook you a steak or chicken in a clean frying pan with virgin olive oil and clean utensils. They'll do it, no problem. Also, for potatoes have them either cut a fresh potato and put it in the same pan, or have them bake them as fries. It's just a steak fry, but with nothing on it except a potato.

Amy's frozen dinners are excellent (we get them at Publix) and they state on the front if they are gluten free.

Spices need watching. Sea salt and real pepper, no problem, but mixes might be a problem. I think all McCormicks are OK, but you should check their website.

Lay's Regular Potato chips and Tostitos regular corn chips are OK too. Most chips are, as long as they are just chips with no flavorings. Phillyswirl is a great dessert and Aunt Candice's cookies are all OK.

If you go into the Health Food store and tell them you want to be on a Gluten Free diet, they can help you. The you can move toward the common grocery store as you learn about the bigger manufacturers. This definitely saves some bucks.

I still need to get you the list, but even with it you should heck the igredients fairly often in case they change anything.
 

shrox

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My condition is probably directly caused by Parkinson's, and involves the muscles of the intestine. I do watch what I eat, it can hurt moving thru! French fries are the worst. Ironically, the local place makes the best fries and burgers in the world. So I endure pain at least once a week. Somethings are just worth it.

Intestial and digestive problems are no fun, especially for a kid, Vanilla Coke and Vanilla Pepsi are somewhat soothing for stomach upset to more than a few people it seems, does your son like those?

shrox
 

OccamMD

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He doesn't have any pain as long as he is on the GFCF diet, he actually never had any that we know of, but he couldn't talk when we discovered it so we wouldn't know. We may put him on what is known as a gluten challenge. Since diagnosis and blood test are iffy, the community seems to favor giving your kids gluten for a short period of time and measure their response. He drinks regular coke and pepsi, but honestly I am trying to steer away from those things, as well as overly zealous juice drinking. All that sugar seems to be a metabolic waste.

Don't get me wrong, I am no naturalist/nutritionist zealot. I could stand to lose about 25 lbs, but I love to eat.

He eats a lot of fruit and honestly loves his cookies. It turns out he loves Oscar Myer bun length weiners. It looks a bit strange when the kids pull out their sandwiches for lunch and he pulls out a cold weiner w/no bun. He just likes them cold, don't ask me why. He can also eat certain lunchmeats, hamburgers, and steak. Once we found him eating so many hotdogs we decided to go the health food store route for new hotdogs not made from scrap.

I understand the difference between your issue and his, but I thought it might be worth a try.
 
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