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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Arrrrgh! More Restrictions!
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Well, friends, my Enterolab tests just came back and it looks as if soy and dietary yeast are history. Rats! At least I've still got eggs... they squeeked in at a 9 (10 being considered max normal). But yeast and especially soy are definitely no-no's.

So now I know why I've been feeling bad again. When I first went gluten and casein free I was feeling soooo much better, but as time went on it wasn't so good anymore. I was thinking there was sneaky gluten somewhere, but I just couldn't figure it out.

For those of you who are gluten-free/CF/SF/YF (yipes!) can you give me an idea of what you eat? I'm down to chicken and turkey (haven't eaten any other meats for 20 years), veggies and fruits, rice. I'm also eliminating nightshades because of the arthritis connection.

Please... any suggestions would be most appreciated. This is pretty overwhelming right now.

:unsure:

Also, for those of you who have lived this diet for many years, were you able to add any of your non-gluten restricted foods back into your diets once you got healthier? It would help tremendously to know that some day I might be able to have some cheese or dribble a little soy sauce (wheat-free, of course) on my plain rice.

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I have diagnosed allergies to dairy, eggs, soy, cane sugar, vanilla and nutmeg as well as gluten intolerance. I also avoid sorbitol like artificial sweeteners, alcohol and caffeine, because I react badly to those. Rather than focus on what I can't eat, I look for substitutes for all my allergens, which are most often 'ingredients' in many foods, rather than just specific foods.

I eat all gluten free grains (rice, quinoa, etc.), cereals, breads, wraps, and pasta. Instead of dairy, I use hazelnut, rice or coconut milk. I eat rice based cheese or make my own cheeses from the "Uncheese" cookbook. I eat coconut milk 'Truly Decadent' ice cream or make my own cashew based frozen desserts from the 'Vice Cream' cook book. I make my own mayonaise, because I can't find any soy/egg/cane sugar free mayonaises. Instead of cane sugar, I can eat beet sugar, honey, agave, maple syrup, stevia, etc. Instead of vanilla I use ginger peach, mango, or coconut flavors when I bake. Instead of nutmeg I use allspice or cardamom. I usually make my own cookies, cakes, pancakes or muffins, because I can't find many ready to eat varieties, which are free of my allergens. Fortunately I live close to Ener-G Foods and can buy relatively inexpensive Ener-G breads on sale at my local Fred Meyer Stores.

I can eat all vegies, meats, poultry, fish, fruits, legumes, seeds, nuts, and oils. I enjoy nut butters and nut based milk. I enjoy making casseroles from rice or quinoa with legumes. I like making soups from beans and small amounts of meats. I love Sunshine vegan burgers (made from brown rice and sunflower seeds). When I cook, I prepare several meals and freeze the leftovers in meal sized portions.

I believe my food choices are only limited by lack of imagination and habits. Having 7 food restrictions motivated me to explore different ethnic cuisines and many foods I would have never tried, when I was stuck in my previous gluten/dairy/egg rut.

SUE

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Wow! Thanks, Sue! You're really creative and that's what I needed to hear.

I did switch to rice milk a couple of weeks ago when I suspected soy, and it's working out well for me. I tried the Rice Vegan cheese and it was pretty awful, so I'll look up your "uncheese" book. "Vice cream" also sounds intriguing.

You've given me a lot to "chew" on -- thanks a bunch!

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Wow! Thanks, Sue! You're really creative and that's what I needed to hear.

I did switch to rice milk a couple of weeks ago when I suspected soy, and it's working out well for me. I tried the Rice Vegan cheese and it was pretty awful, so I'll look up your "uncheese" book. "Vice cream" also sounds intriguing.

You've given me a lot to "chew" on -- thanks a bunch!

You're welcome! I noticed that I forgot to answer your questions about reintroducing gluten ...

I will NEVER purposely eat any of my 7 allergens. I have plenty of substitutes. I focus on finding substitutes so I don't feel so deprived that I would risk the painful reaction symptoms I experience after eating any allergens. Why would I purposely inflict pain on myself? There are sooooo many foods, which I can eat without allergy reactions.

I have a few recipes for soy sauce substitutes. However, I never liked plain white rice, even with soy sauce. I prepare brown rice with many other vegies, herbs, spices and broths.

SUE

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I'm still confused between food intolerant and food allergy. When I react to my intolerant foods, I don't have the hives/histamine reaction (IgE type)... just the GI issues with additional neuro symptoms (IgA). I do have an IgE type allergy to Sulfa drugs and believe me... I would NEVER intentionally take that again! Also, I know I will never go back to gluten... ever. That one I know I have to give up. But the other food intolerances, like dairy, soy, yeast... can those get better with time?

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I make my own mayonaise, because I can't find any soy/egg/cane sugar free mayonaises.

I enjoy making casseroles from rice or quinoa with legumes.

SUE

Sue, I have been gluten and dairy free for awhile, but also new to soy, yeast, and also egg free. If you don't mind, could you post how you make your own mayo? I would really love to try this as it is something I miss. Also, I would love a good casserole recipe that may fit my restrictions. I have never tried the Ener-g breads, are they really good? Thanks.

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I'm still confused between food intolerant and food allergy. When I react to my intolerant foods, I don't have the hives/histamine reaction (IgE type)... just the GI issues with additional neuro symptoms (IgA). I do have an IgE type allergy to Sulfa drugs and believe me... I would NEVER intentionally take that again! Also, I know I will never go back to gluten... ever. That one I know I have to give up. But the other food intolerances, like dairy, soy, yeast... can those get better with time?

I called enterolab myself with this question, because I want to know of course should I have hope? Anyway, the nurse I talked to said that there really is no definitive answer to this: some people are able to eventually heal and add foods back in, BUT she recommended eliminating for at least 18-24 months......then maybe retest, that's what I was thinking of doing. My soy was like 36, dairy 25, yeast 15, and egg 12. So I'm hoping to at least be able to egg/yeast again sometime, and I'd LOVE to maybe do dairy too.....but I'm OK without it too if it makes me feel better, which it has. I've dropped the soy, egg, yeast now for a couple of weeks and can for sure tell a difference already. FYI, the nurse also told me, the higher the number doesn't necessarily mean a more severe sensitivity, but rather, the longer you've had the sensitivity. I thought that was interesting.

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Thanks, Jackie -- you just saved me a phone call. We sound pretty similar. Soy 55, yeast 24, dairy 19 and egg 9 (sqeeek). I'm really happy to hear you're feeling better even after just a couple of weeks. Gives me hope.

How did you finally figure out the gluten connection?

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The source of your confusion is disagreement among allergy 'experts'. Some allergists and naturopaths consider IgE mediated (immediate) reactions the only 'true allergies' and any other reactions merely 'intolerances'. However, IgG or IgA mediated (often delayed) reactions are also immune responses, unlike lactose intolerance which is caused by lactase deficiency. So other allergy 'experts' also consider IgG and IgA mediate reactions to be 'allergies'. Unfortunately 'gluten intolerance' is also confusing, because gluten reactions are immunological IgA or IgG reactions, although some people have IgE allergies to wheat.

Furthermore allergy 'experts' disagree about whether people with immunological reactions (or allergies) to certain foods can return to eating those foods after a time of abstinence. From what I've read, the body does not forget how to make antibodies to certain foods. So I would expect to always react to diagnosed allergens. Unfortunately many older folks, who were diagnosed with celiac disease as children, were told they would 'grow out of' their gluten intolerance. Current research shows that doesn't happen.

I suspect others may disagree with difference between allergies and intolerances. However, the bottom line is "if you have uncomfortable or even painful reactions to eating a food, stop eating it permanently". There are so many other foods we can eat instead of diagnosed allergens or intolerances. Most people tend to eat only a dozen or so different foods from day to day. Rather than feel deprived of their 'favorites' by allergy diagnoses, they can develop new favorites and live a healthier, painfree life.

SUE

I'm still confused between food intolerant and food allergy. When I react to my intolerant foods, I don't have the hives/histamine reaction (IgE type)... just the GI issues with additional neuro symptoms (IgA). I do have an IgE type allergy to Sulfa drugs and believe me... I would NEVER intentionally take that again! Also, I know I will never go back to gluten... ever. That one I know I have to give up. But the other food intolerances, like dairy, soy, yeast... can those get better with time?

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How did you finally figure out the gluten connection?

Well, my daughter being diagnosed with celiac was the first I ever heard of gluten, that was a little over two years ago. The more I read and learned, the more it all made sense. I had negative blood testing, but was still convinced I was probably gluten sensitive. Started gluten free/dairy free anyway, that was in June (09)....then did the enterolab tests last month. Although at first I hated the idea of giving up so much more, but I'm very relieved just to know. Now already feeling better I'm geeked :D and I don't mind what I've given up. I told myself life begins again at 33! Since giving up the soy, yeast, and egg I really have had a great increase in my energy; fatigue was my biggest problem, along with anxiety. I was so used to feeling bad, I didn't even consider it abnormal for so long. Sad really, looking back on it now. I hope you start feeling better soon too!

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