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Wheat Allergy-Celiac Sprue

Posted by marymo (My Page) on
Mon, Apr 21, 03 at 21:30

My daughter has just been diagnosed with Celiac Sprue disease. She has several brochures explaining this disease plus a few pages of What Not To Eat. It looks overwhelming, but I am sure it is something that you learn to live with. Does anyone have this disease and do you have any suggestions on where to purchase products made without wheat, oats, rye ingredients. I think that finding foods to replace the bread and the pasta will be the most difficult. She is married and has a family, so I don't have to cook for her, but she visits us a few days a month and I need to learn to cook the correct foods. Hoping for your advise.

Mary


Follow-Up Postings:

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RE: Wheat Allergy-Celiac Sprue

I have a friend with that allergy....not so hard. Health food stores and places like world market and Trader Joe's carry wonderful rice crackers and pasta....you can buy wheat free bread...learn to use arrow root for thickening.
She can eat meat potatoes and veggies....salad and fruits, cheeses and certain desserts like cheese cake, flan and flourless chocolate cake.
Good luck.
Linda C


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RE: Wheat Allergy-Celiac Sprue

Bumping back up instead of starting a new post ---

It is looking more and more like our son has celiac. At 9 months, he was diagnosed with a dairy allergy. At one, he had an anaphylactic reaction to eggs. I have felt all along that there was something else we were missing, however our old allergist kept blaming me for letting son get egg in his diet, saying that is what kept causing all his allergic reactions. (Constant red, itchy eyes, chronic loose stools, no weight gain over the past year or so, complaining of hip and leg pain - countless x-rays, ultrasounds, blood tests have ruled out anything major.) I knew he wasn't getting egg as I am very controlling over what he eats. (Make everything from scratch for him.) We went to a new allergist a few weeks ago - son (now 2.5 years old) tested positive to sunflower seeds and peanuts - and possibly has celiac. We go back Monday and hope to find out more then. I made my first gluten-free supper tonight (rice pasta, not too bad) and now have a loaf of gluten-free banana bread in the oven. (Made from Arrowhead Mills baking mix - I have had good luck with them on other baking products so hoping this one is good.) I am worried that, along with his other allergies, this is going to drive me over the edge. Luckily he is a very good veggie and fruit eater, though he doesn't eat much meat.
I looked at two stores today and couldn't find any gluten-free bread that didn't have an allergen in it. Anyone know of any brands to look into? I am going to Whole Foods tomorrow so hoping they will have something. Any baking advice? Or good cookbooks? I checked one out from the library today, but she uses a lot of nut flours, eggs and powdered milk. (Hoping maybe I can sub powdered rice milk.) Thanks in advance. ~ Suzie


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RE: Wheat Allergy-Celiac Sprue

Suzie, I don't have any cooking advice for you, but I thought I should mention that I've been reading up on something called leaky gut syndrome, which is where the lining of the intestine is permeable rather than thick. This allows bits of food to escape into the blood stream, etc., where they can cause problems, and it also allows yeast and other inappropriate substances into the intestine. More problems. One of the results of all this is food allergies. Another result--usually coming after the allergies, I gather, is autoimmune conditions such as lupus and rheumatoid arthritis.

Now, I don't know if children as young as your son get leaky gut, but you might check out that possibility. Most doctors don't know much about it, but there's a ton of information online. One of the treatments, an amino acid called L-Glutamine, has made a huge difference for some people. I'm going to try it myself. I haven't found reports of any side effects, but I wouldn't know the dose for a small child. Again, I thought it might be something for you to think about if you're interested.

Best of luck.

Susan


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RE: Wheat Allergy-Celiac Sprue

I have been told by a biochemist that the best thing for leaky gut syndrome is to cut out all egg whites. It seems very strange to dump the whites down the drain and keep the yolks, but that is what I do and it seems to help a lot.

I never found a ready-made baked goods product that I liked that didn't have gluten. I had the best results baking at home using barley flour. Whatever alternate flour you use, you should add a teaspoon of xanthum gum and substitute about 1/4 cup of tapioca flour. At least I found that best. You can find these at Whole Foods

Whole Foods has all my favorite rice snacks. They are pretty spendy, but such a treat. The black sesame crackers are my favorite. There is also a teriyaki flavored square shaped puffy cracker that I like. I wish I knew the name, but all of the crackers are kept together so they shouldn't be hard to find. In the infant section, you can find maple flavored cookies made without gluten that I think are terrific. I particularly like the teething biscuits.

I have found a number of ways to use sweet potatoes. My family's favorite is sliced baked sweet potatoes that I cook with chili powder, cumin, and salt with a little lime juice drizzled over the top after they come out of the oven. I let these bake until they are a bit crisp on the outside. My family actually asks for this dish.

Mostly we are eating more Asian recipes. Since we already loved Thai, and Chinese food, this was not a problem.

The hardest thing is to eat out unless you are going Asian. I usually order a salad. Breakfast foods can work if you stick to eggs, hashbrowns and meat.


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RE: Wheat Allergy-Celiac Sprue

A friend was recently diagnosed with it and I remember her saying that rather than an allergy, it's more of an intolerance of gluten coupled with the malabsorption of certain nutrients. (In her case, she was not absorbing magnesium and copper especially.) Another friend (male) has had it for years and copes pretty well. He always takes his own lunch or dinner whenever necessary. He can eat in some restaurants, as long as the chef is careful to prepare his food exactly as he specifies. Like Lindac said, he buys foods at Trader Joe's and Whole Foods, and can drink sulfite-free wines, which are usually labelled.

My daughter has a form of dysautonomia and celiac sprue disease often turns up on websites and forums I search. There's a big overlap with irritable bowel syndrome, mitral valve prolapse, chronic fatigue syndrome and just a slew of other dysautonomias and autoimmune disorders.

I wish you luck. Also, go to Google and type in celiac sprue disease - no quotes. Lots of sites will come up and in my daughter's case, I've found the nonprofit support sites to be most helpful, along with Medline. Here's a link to the first one.

Here is a link that might be useful: Celiac Sprue Association


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RE: Wheat Allergy-Celiac Sprue

Try looking at the cooking forums here at gardenweb. You may find alot of receipes and people with special diet needs.


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RE: Wheat Allergy-Celiac Sprue

I have the bad reaction to eggs and also have some problem with milk. I am not sure at what point we declare that it is an allergy, but both create havoc with my stomach.

My greatest finding was that since I tolerate cheese well, I am allergic to whey. Now that I eat nothing with whey I have much more control over my health. Good luck.
Sammy


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RE: Wheat Allergy-Celiac Sprue

If your daughter was just diagnosed with Celiac, I would highly recommend that you and others in your family be tested. Also, that her own family be tested as well but she has probably already been given that advice by her doctor. This is a genetic problem and is very common within families once one member is tested positive.

My brother has recently been diagnosed as Celiac. My mother who is now deceased had Celiac. I never thought I had it because I don't have the common gastro-intestinal problems. But it turns out that over 50% of Celiacs don't have these symptoms. I do have peripheral neuropathy in my feet, i.e. lots of foot pain and just recently learned that this can be caused by Celiac disease. So I had a blood test last Monday. Hope to know more soon but the more I read about Celiac, the more I'm fairly certain that if I don't have the disease, as a minimum, I am gluten intolerant so I'm trying to eat that way. Rather difficult.

As far as how to cook for them, the best way is to avoid processed foods. Cooking from scratch is best. All veggies, meats, cheese, and dairy (if they haven't also been tested as sensitive to dairy) give you a wide variety to cook from. Unfortunately, sugar is okay which is what I've been eating way too much of since I started on this gluten-free diet. I need to work on that.

I also have used the Arrowhead Baking mix with success in cooking "impossible pies". I have not had good success with non-gluten pasta yet, still trying to find something that tastes decent. I recently tried lasagna and it was pretty awful.

I recently downloaded the gluten-free info from the Whole Foods website to find out what was gluten-free in their store. Seems like their own brand of "365" is mostly gluten free where possible. (Bread doesn't count). We have a Whole Foods store near us which I will be frequenting a lot more often.
Good luck.
--Alice


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