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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About JenKuz

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  1. Thanks so much for the extra information, Nora. Miriam--I thought I was the only one out there! Yes, it seems we both have similar manifestations; I also had a really high fat malabsorption score. I suspect it still is, since I've had a rough summer for glutening, and my responses seem to be getting stronger. I haven't quite been able to bring myself to stop eating out but I think I'm going to have to. I feel pretty sure that I've had gluten intolerance in a mild form for a while, but the really severe symptoms seem to have been sparked by a bout of food poisoning, which was a rather unfortunate red herring. I find I'm pretty susceptible to food illnesses now; more than I used to be. Sometimes it can be chalked up to glutening, but other times I know its food poisoning because of fever and vomiting, and it happens much much more often than it used to. I don't know if that's just from the damage to the guts letting more viruses and bacteria in, or a frenzied gut immune response, or what, but it's not fun. My diagnosis was, as for most people, problematic. I had an endoscopy and a colonoscopy. At then endoscopy, the doc saw inflammation in the stomach, and took a biopsy to rule out h. pylori. But for some reason he decided not to scope any further down than the duodenum, and he didn't take any biopsies of the small intestine. In the colonoscopy, in histo, they found high numbers of eosinophils. The doc said that was probably left over from the parasites I had "probably" caught while in Africa. From that I gleaned that the doc was a moron, because eosinophil response is limited to 6 to 12 hours in circulation. I had returned from Africa a year before, and had taken full rounds of anti-parasitics on returning, as a precaution. I had had three rounds of negative tests parasites (and assorted other gut infections) over the course of that year. So what he thought eosinophils would still be doing hanging around, I don't really know. My suspicion is that they are involved in the on-going gluten/soy intolerance. Eosinophils normally respond to IgE type antibodies more than IgA, but they do have IgA receptors, and have been shown to respond to the binding of those receptors, so it seems that IgA involvement is frequently overlooked. Now, my doc said that the gastritis was probably GERD and inflammation was visible in the esophagus. I dunno. Wicked heartburn is usually my first sign that I've been glutened, and it always sends me re-reading ingredients lists if I get it. This is the daggers-in-the-chest variety, just to be clear, not the burning-in-the-throat variety. I sort of wish the doc had taken a biopsy of my esophagus. Right when I cut out wheat, before I'd started to heal, the heartburn was awful. It could lay me out for a night, because it hurt so badly. I posted a couple times on that subject looking for tips on relief, and those topics are out there somewhere. So, hmm, what else about my symptoms? I don't really know. Before I cut out gluten, I was nauseous all the time, and had a lot of pain in the intestines. Now, when I am glutened at home, or suspect that I have been eating out, it tends to be more lower-GI symptoms, except for the heartburn. The nausea isn't as bad; or at least, it's not as constant I've found, given the high fat malabsorption, that when I'm glutened I'm really sensitive to eating too much fat. It makes things much, much worse for me. I also feel like I'm really sensitive to bacterial overgrowth, because usually eating too much starch also seems to prolong symptoms when I've recently been glutened. No gluten/no soy/low fat/no starch is not a particularly fun or easy diet, but I feel so much better that it becomes appealing as a dietary solution. Lots of lean protein, yogurt, fresh vegetables (helps if they're mostly cooked right after a glutening), olive oil, and it's usually not long before I'm back on my feet.....
  2. I had a similar experience with the falafel at a little Moroccan joint in Berlin *sigh*. Unfortunately, I picked up the fantastic foods variety at the store recently and read the ingredients, but apparently not carefully enough. I've learned that Casbah brand and Sadaf brand have wheat flour, and Near East brand has wheat germ.... and Manischewitz is out too The soy sauce always slips past me on labels. So I actually glutened myself on the stuff just after posting the recipe, as it happens..... hence I will NEVER forget that it has wheat in it! I think the flour should be eliminated from the recipes that use mashed canned garbanzos. Or replaced with half the amount of corn starch plus half the amount of masa flour.... seems like that would allow a reasonable textural replacement? I found this recipe that doesn't call for flour: RECIPE INGREDIENTS 1 cup dried peeled fava beans (7 ounces), soaked overnight 3/4 cup dried chickpeas, soaked overnight 1 small onion, finely chopped 1/3 cup minced flat-leaf parsley 2 tablespoons minced cilantro 1 garlic clove, minced 1 teaspoon baking powder 1 teaspoon kosher salt 3/4 teaspoon ground cumin Pinch of crushed red pepper 3 tablespoons water Pure olive oil or canola oil, for frying Tahini Sauce (see recipe) RECIPE METHOD Drain and rinse the favas and chickpeas and put them in a food processor. Add the onion, parsley, cilantro, garlic, baking powder, salt, cumin and crushed red pepper. Pulse, scraping down the side of the bowl, to form a coarse paste. Add the water and process until the mixture is gritty but fine and brilliant green. Scrape the paste into a bowl. In a medium saucepan, heat 2 inches of oil to 350 degrees F. Scoop rounded tablespoons of the falafel mixture into the hot oil and fry in small batches until browned and crisp, about 2 minutes. Drain on paper towels set over a wire rack and serve hot, with Tahini Sauce. Recipe created by Nancy Harmon Jenkins. Recipe reprinted by permission of Food and Wine. All rights reserved. Otherwise, as near as I can tell, Orgran makes a mix, and Bob's Red Mill makes a garbanzo-and-fava flour. They offer this recipe: Ingredients: 1 cup Garbanzo Bean Flour 1 Tb Sea Salt 2 tsp Ground Cumin 1-1/2 tsp Turmeric 1 Tb Freshly Crushed Garlic 3/4 cup Water, hot 1 tsp Baking Soda 1 Tb Chili Pepper, Chipotle (Ground) 1 tsp Mustard Seed 1 tsp Garam Masala 1 Tb Crushed Fresh Ginger 2 Tb Finely Chopped Onion 1/2 cup Frozen Spinach, pressed & drained 2 cups Vegetable Oil for frying In a bowl, mix bean flour, baking soda, salt, chili pepper, cumin, mustard seeds, turmeric and garam masala well. Add hot water, stir well. Gradually add garlic, ginger, onions and spinach. Mix well and let mixture rest for about 5 minutes. Heat 2 cups of oil in a deep fry pan. When oil is hot, drop 1 tablespoon of mixture into hot oil (about 6-8 balls at a time) and cook for about 5 minutes or until balls are golden brown. Remove and drain onto paper towels. Falafel can be kept warm in oven while frying remaining balls. Great served with this dipping sauce: 1/2 cup plain lowfat yogurt 1/2 cup lowfat or nonfat sour cream 1 small cucumber (peeled, seeded and finely chopped) 1/4 cup fresh parsley finely chopped 1/2 tsp Bob's Red Mill dried dill weed In a small mixing bowl blend all ingredients together. Enjoy. I think the dry ingredients could be rather easily assembled and kept on hand for quick falafel
  3. It's true, Hathor. Fantastic Foods falafel mix has soy sauce in it (why? I can't fathom.....it's not like soy sauce is a traditional and indispensable flavoring for falafel). I contacted Casbah and Manischewitz to find out whether theirs are gluten-free. You can make your own with garbanzo flour.
  4. Yeah, usually it's something you'd do to use up old bread, right? Well, I actually had a reason to make it, which is going to sound a little strange, but if you go to the following link, you'll see what my objective is: http://www.blackwidowbakery.com/demo/meatcake/ It will be for my (non-gluten-avoiding) boyfriend for his birthday. He adores all things red meat, and this is more or less the perfect thing for him. However, I had to practice getting a gluten-free meatloaf right before attempting to make a cake with it. Like I said, though, I think it will make a perfect binder for crab cakes and salmon patties, and I'm going to try it as breading on fried things like green tomatoes and eggplant.....
  5. Gluten Free Cookbook

    I don't know many of the cookbooks, but glutenfreegirl has a marvelous blog.... http://glutenfreegirl.blogspot.com/ With a lot of recipes. She's coming out with a cookbook soon that I'm drooling over. Can't wait for it to come out......
  6. I wanted to make a meatloaf the other day; just had a crazy craving, i dunno. So I tried to think of what would be a good binder. I did NOT want to go the Dr. Atkins pork rinds route. So I decided to try falafel mix. It worked exceptionally well. WAY better than saltines. I think this is one case where the gluten free alternative is in all respects superior to the traditional variety. I plan to try the falafel mix for crab cakes (which I sorely mix), and I suspect it would make a really nice breading for fried fish, zucchini, etc. Here's my recipe: Glaze: 1/4 cup brown sugar 1 small can tomato paste 2 tblsp worcestershire hot water to thin to taste Loaf: 1 onion, diced very fine 3 cloves roasted garlic or 2 tsp minced garlic 2 eggs 1/2 cup yogurt 1 tsp horseradish 1 tsp dijon mustard 2 tsp worcestershire salt (beware of salt in falafel mix when salting this dish) pepper thyme oregano 1 1/2 cup falafel mix 1/2 pound reduced fat pork sausage 1/2 pound ground veal 1 pound ground chuck Dice onion and saute with garlic in a drizzle of oil (as little as possible, there's enough fat in this dish as it is Smiley). When cooled, whiz in the food processor (optional). Mix eggs, yogurt, and all seasonings together. In another bowl, combine the meats carefully, to mix together without squeezing or overworking. Add falafel mix and onion to egg mixture, and stir till just combined, then mix together with meat. Form into loaves. If even remotely possible, bake in a dish that drains. Bake at 350 for 35 to 40 minutes. Mmmmmmmmmmm, meatloaf....
  7. Hi all, I made a very simple popover this morning. I haven't done much baking since being diagnosed, and so I don't have all the gluten-free flours in the pantry. This popover was inspired by a "quiche" I made last night. I did it with no crust, and then stirred some corn starch into the egg mix. The whole thing puffed up well, so I tried to adapt it for the purpose of popovers. So, I stirred 1/8 cup of corn starch into 1/3 cup of milk, then beat in two eggs and some salt. Buttered a cup, then dropped some butter in the middle. I put it in a 400 degree oven, and checked on it about 45 minutes later. Well, the thing had darn near tripled in size! So the recipe above would be appropriate for two popovers. The texture in side is really good, and the top crisped a little, though not as much as could be desired. Still, it was nice to have a popover.......
  8. Hi Horsegirl, I think what you're noticing is a thing called "selection bias." The people who come here are those who have either directly diagnosed celiac disease, or else unresolvable gi symptoms. The tests that enterolabs does are identical to the blood tests for anti-tissue transglutaminase and anti-gliadin antibodies. They use the same antibodies in the assay, and the same reagents. I looked into this before having the tests myself. the only difference is that they test stool instead of blood. This actually makes more biological sense, as the igA class of antibodies are produced basically only in the intestines (and breastmilk). If you accept the blood test, then you should accept the enterolabs tests as well. 1 in 133 people have celiac disease, but most are undiagnosed. Enterolabs tests are more sensitive than the other test, which only diagnose about 1 in 10 of the people who have gluten intolerance problems. Many of those people come here for help, so its no wonder that many of the enterolab results for people on this board are positive....
  9. I had eosinophils in the large bowel. I did some investigating and found some literature that suggested that eosinophilia can be mediated by IgA. Ordinarily, eosinophilia is associated with "genuine" allergic responses, wchich, by definition, are mediated by IgE resulting in histamine release from basophils and mast cells. Eosinophils relaease "granules" that mediate inflammation. Eosinophils have receptors for different antibodies (the antibodies sort of tell them what to do, when). When bound in a certain way, they release histamine. They have the most receptors for IgE but also have receptors for IgA. Because they are evolutionarily involved in mechanisms to fight intestinal parasites, it makes sense that they would communicate well with the primary antibody made in the gut. How the eosinophils get called to the esophagus or gut in high numbers is an open question....My guess is that given the inflammation in the gut from celiac autoimmunity, otherwise-harmless immune cells for food-related potential antigens are "primed' to attack where they wouldn't have before. So new ("genuine") allergies develop. Anyhow, once they're there, they can bind to IgE *or* IgA, release inflammatory proteins, and generally makes things uncomfortable.
  10. I found myself hungry but nauseaus at the same time through much of the first year and a half of symptoms. I ate a lot of carbs, craving cakes and whatnot before I cut out wheat, and then potatoes, rice, etc. I think this was because of the fat malabsorption. I had a fairly high score on the fecal fat test, as well, and given that my body was not absorbing fats, I think I needed some extra form of energy in order not to starve. Here are my experiences. Rice did me well. Rice puddings and things like that were very good on my stomach, and I lived on risottos for a long while. At one point I went on the "specific carbohydrate diet" which really helped a lot. It was hard the first couple of days, because my body really need energy, but I fed it lots of honey, bananas, and eggs and other protein, and before long I was able to digest unsaturated fats with ease. Even now I get sick if I eat too much transfat or saturated fat. Olive oil, avocados, and milk fat go down fine, though (the milk fat is moderate, almost all from yogurt). Butter and red meat made me feel too awful to describe, and still do to some extent, so I only eat them when I have a presumably iron-associated craving for beef.
  11. When i first started having symptoms, i had this problem. Stools were loose, mucously, fatty, full of undigested food, and I always felt very feverish and uncomfortable passing them....would sit on the toilet for long periods, not constipated, but clammy and in pain.....
  12. Hi Whattodo, When I had my endoscopy, it was something similar. I already had negative blood tests for antigliading IgA and anti-tissue transglutaminase IgA. The doc took the scope through the stomach and duodenum, and then stopped. He saw inflammation of the stomach, took a biopsy of that, but no biopsy of the small bowel. There are problems: 1. Damage from celiac is often spotty. If the only look at part of it, they might miss damage later. When testing for celiac is indicated, it is recommended to take several biopsies from the whole length of the intesting. 2. Damage from celiac presents more frequently in the lower parts of the small bowel. In my case, he didn't look past the duodenum, meaning that although it "didn't look like celiac" to him, he may have seen only severe cases of celiac in which the full small bowel looked bad to the naked eye. In earlier stages, celiac damage can be lower, patchy and microscopic. 3. Damage to the small bowel is part of an advanced disease process. Symptoms generally begin years before this damage is apparent. In the use, biopsy of the small bowel is considered by the medical establishment to be the only truly definitive, or at the least the "gold standard," test for diagnosis. However, celiacs in the US are diagnosed *on average* ten years after symptoms begin. This should say something about the delay our mode of testing imposes on patients. I went through a private lab here called Enterolab. A lot of people on the forum trust it, although it isn't quite widely accepted in the medical establishment as yet. I vetted them rather thoroughly. I've worked in similar labs, and so I felt competent to evaluate their methods. They are based on very sound biological prinicples. They do tests for anti-gliadin and anti-ttg, just like the blood tests normally done. In fact, they use the exact same assay and identical reagents to the blood tests. The difference is that they test stool instead of blood. Why is this? Because IgA is manufactured primarily in the gut. Hence, testing stool is far more sensitive (picks up far more positives) than testing blood. If you have either of these types of IgA, whether in stool, blood or skin, you definitely have autoimmunity of the type seen in celiac, regardless of the present state of your gut. If you gone seeking help because of symptoms, then obviously some damage is there whether picked up on your scope or not. ERGO....Celiac. Or something very much like it.
  13. Ice Creams..

    I don't know what differences in standars there are between Germany and here....but when I was there over the holidays, I noticed that many lays brands had wheat products listed in the ingredients (!) where the same flavors...well, I can't really compare exactly. I never saw wheat in corn chips here before, but didn't really eat them that often. And now I just assume that whether it's listed or not, wheat is in the flavoring of most flavored corn-chips. In fact, wheat was listed in almost every brand of chip I looked at there....it must have been used in the flavor coating. It really made me wonder whether some chips here also have it, and maybe haven't been labeling. Anyhow, if I remember, it was in BBQ, Cool Ranch, some kind of spicy chip, .... and you know, they can't possibly have a separate facility for each flavor they make so chances for CC must be high.... (Of course, to be fair, it's also possible that they market different formulations in different countries.)
  14. It's interesting, because the immune system deals with bacteria and viruses like that too. First exposure, strong immune response, second exposure, even stronger faster immune response. Every exposure after that ever faster and stronger. BUT with chronic exposure....usually the immune system "calls a truce" and responds at some kind of equilibrium level.