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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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  1. I am over the initial shock and the initial confusion. I finally managed to get gluten out of my diet for a while, and I feel better, but not great. I no longer get muscle cramps, but my legs and feet feel weird when I am trying to sleep. I can't quite describe it. Just sort of uncomfortable. No pain, just maybe like my skin is on too tight or something, and it makes me toss and turn and wiggle my toes a lot. Hard to get comfortable to fall asleep. Also, should I be getting a flu shot? I never needed it before, and I never got sick, but I am coming down off a head cold that flattened me for 4 days and isn't quite gone yet. Has anyone had adverse reactions to flu shots? I did the first time I got one many years ago, got the worse case of flu in my life, and never got a flu shot again. Kind of gun shy now, but this head cold was no fun either. I also noticed that I get dizzy a lot. The slightest little exertion and I am really spaced out and kind of sick feeling. I don't see stars, like if my blood sugar gets a little too low or I stand up too quickly. I do see sort of a rainbow effect around the edges of my vision, like a gas spill on a wet pavement. I also feel weak and have to sit and rest for a while when that happens. I was pretty athletic last year, (pre-diagnosis) so this stuff really throws me, because there is no warning. I'm going along fine, then suddenly it's nearly lights out. Anybody know what might be going on or is this just something I need to get used to? Thanks ya'all.
  2. I am a newbie too, but maybe 3 or 4 months. I didn't get quite as upset as you, but I wasn't in finals week either. It is a big deal, though. It's not "just food." Food is a major part of everyone's life. It's how we reward ourselves, socialize, take a break, etc. It takes longer to shop, longer to cook, longer to clean up (because you don't have so many convenience foods), no more fast food in a pinch. Travelling has to be planned more carefully. Dinner away from home has its limitations. I have passed through some of the initial shock, but I am still in the thick of it. UNTIL YOU FINISH FINALS, I suggest you get lots of fresh veggies, some baking potatoes, some gluten-free sour cream and salad dressing, maybe some canned salmon or tuna, and kind of stick to a very simple diet until you have taken care of studying and taking your finals. Learning all those additives will take a while, and you will have some accidental contaminations. You need to keep well until after finals. A mistake can really mess up your ability to focus or concentrate. After that, take your lists and start experimenting until you have a nice variety of safe foods. Be creative. I found gluten-free French rolls that did not in any way resemble French rolls, but did a really good impersonation of a hamburger bun. Some gluten-free food is like eating dried mud...but I have found a lot of things I really like and can't tell the difference. I found a good spaghetti, a really good blueberry muffin mix, brownie mixes, etc. Plus, I can still have Dove Dark Chocolate and some simple flavors of ice cream. It just takes a while to get your mind around it. At first, reading all those labels is mind-boggling and extemely time-consuming (which is why I suggest sticking to simple until after finals). I didn't like the crumbly frozen gluten-free breads in the stores, so I got a good gluten-free cook book and a bread machine. I measure up a couple of loaves worth of dry ingredients on a Saturday afternoon, bag them and put them in the fridge (cuts the time and clean-up). Then I mix wet ingredients for one loaf and let the machine do the rest. It's good enough to fool a non-celiac. The next week, I just have to add the wet stuff. You will get really good at making this easier and tastier for yourself. I also contacted a lot of restaurants that I like to go to, and they were mostly very helpful about listing some things I could order safely. Good luck with your finals. Once you pass them all with flying colors, you can relax a bit and deal with this a little more easily. Wendy
  3. I am still fairly new at this. My record for staying gluten-free is 13 days in a row without being sick. When I eat the wrong thing, I have all the symptoms you listed. I have trouble waking up, staying awake, functioning mentally, heart palpitations (especially when I am lying down), and I turn into an absolute beast for about 24-36 hours. I got very concerned, because I thought I was getting worse instead of better. But one kind person responded that the reaction is worse when you start to heal, so I'm hanging in there. As I continue to get better at this, I have lost the reflux (GERD) altogether. I haven't had the palpitations as much. I sleep better. I still get tired easily even though my iron is fine, but I hope that will go away eventually as well. But when I eat the wrong thing, for at least 24 hours, I am a mental, physical and emotional train wreck. I have muscle cramps, joint pain, headaches, dizziness, and I suffer from stupidity. I lock myself out of places, pay for my groceries and start to walk away without them, etc. It's embarrassing and very frustrating. But, then I will be chipper and happy the next day and every day until I slip up again. The sore throat might be the result of allergies. I started having lots of allergies for several months before I was diagnosed which I never had before. I have 2 long-haired indoor cats and a horse that I ride through fields of weeds, so allergies were never a problem before. Suddenly, my head was always stuffy, I got ear infections (which I never had before) which often resulted in temporary vertigo and earaches, sore throats, itchy eyes and ears, sneezing. The whole allergy thing. I still have those symptoms, but not as often or as severe. My immune system is working overtime, so all sorts of other things are slipping in and taking hold. I am hoping some of this will clear up as I stop providing gluten to my immune-system. I'm on day 6 of meeting and, hopefully, beating my 13-day record. I was just thinking how wonderful it is to go to bed without any strange abdominal activity or pain, and waking up not feeling like I want to punch someone (anyone) in the nose. My newest thing is my hands. I have developed dry flaky skin between my fingers, and my rings create red bands of tender, flaky skin around my fingers. Abandoned the rings, and now I'm thinking I need to try a different hand lotion. Every day is a new adventure. : ) Wendy (aka foodphobic)
  4. Help For Dry Skin/rashes

    You should get a biopsy of your mouth. I didn't know I had celiacs until I woke up one morning with the inside of my mouth all enflamed. Long-story-short... They did a biopsy, discovered I had Oral Lichen Planus, which is chronic, incurable, and only occurs in people whose immune system is compromised. That promted a lot of tests which finally resulted in my being diagnosed with Celiacs. There is no cure or real treatment for either disease, but if you can get the Celiacs under control, and keep your mouth really clean, there's a chance it will go away on its own. I have found that using normal toothpastes and mouthwashes aggravates it. Alcohol and peroxide inflame it. Sugar seems to feed it. If you have little white veins in the lining of your cheeks, blisters, and maybe redness or roughness in places along the gum line, you probably have it, but a biopsy is necessary to rule out cancer, and two other similar diseases that are much more dangerous. If your doctor diagnoses you with Lichen Planus, there isn't much they can do to help you. What has helped me a lot is using Tea Tree Oil toothpaste and mouthwash that I buy at the health food store. I also make sure I brush, floss and gargle several times a day, and take it easy on sweets. It has dialed it way back and seems to keep it in check. I am working on the Celiacs, and as I get better at avoiding Gluten, I think the lichen planus is losing its grip. It appears to be healing slowly, but it's very aggressive. I have to be dilligent about keeping my mouth clean and limiting my sugar intake. Not easy on a diet based on rice. I hope you don't have it, but you should definitely see a doctor about it. Foodphobic.
  5. Hi: I just received an update from CSA, and the first topic was a home test kit for gluten. I got really interested until I read the rest and realized it was a home test kit for gluten intolerance. I don't need that. I already know I have it. But that got me thinking. I have been diagnosed for a few months now, and as yet, I have not been tempted to "cheat." I have tried my best to stay gluten free, because when I eat the wrong thing, I go through some sort of Dr. Jekyll to Mr. Hyde transition that lasts a minimum of 24 hours. It's pretty dramatic. It effects my nerves, my sense of well-being, my attitude toward life, my ambition, and makes me impossible to be around, so it's also effecting my relationships and my ability to do my job in an appropriate manner. I realize now that Celiacs was doing this to me for some time on a milder level, but once I started eating properly, when I make a mistake, I am totally out of control. That happened to me last week. I was 9 days gluten-free, and then I ate something that was listed in the Blue Binder as okay, but clearly wasn't. They must have changed the formula, and when I dug the can out of the trash, the label listed things that could go either way. I went to work Friday, and I was an absolute beast to everyone. It was mission critical that I come in Friday, or I would have stayed home and just been miserable by myself. So today, I am doing damage control. Anyway, when I read that little headline this morning, I thought it was a God send. A way to test your food to see if it's safe. Iwould be a tremendous aid to Celiacs to be able to test for gluten in products themselves. It doesn't seem like it would be that difficult, but I'm not a scientist. In my mind, I see taking a tiny sample of the food, pouring a drop of something on it, and waiting to see if it turns periwinkle blue or something. Maybe I watch too much CSI, but a product like that would free Celiacs to risk travel and restaurants again, and it it wasn't unreasonably costly, there would be a market for it. Since it is such an obvious solution, I'm sure it must have been thought of and abandoned for some reason, but I am curious as to why it isn't possible or feasible. Wendy
  6. In response to aljf: I don't think it's a lack of carbs causing my symptoms. Unfortunately, when I started eating all the rice-based stuff, my fasting blood sugar went from normal to 105 in about 4 weeks and 113 in another couple of weeks, which alarmed my doctor. So, I cut way back on the sweets, and rice-based foods, because rice is a simple carb and turns to sugar very quickly. I was having blood sugar fluctuations which have a different set of symptoms. When I dialed back on the rice carbs the blood sugar fluctuations stabilized immediately. I do eat potatoes however. Potatoes take a little longer to metablolize. My feeling of exhaustion, etc., directly coincides with the abdominal difficulties, so I know it is from eating something that either has gluten, or I have some other sensitivity that I haven't identified as yet. You might want to be careful with the candy, etc. Celiacs are at very high risk for diabetes, and we don't want to have to deal with both dietary restrictions. I sort of overreacted when I was first diagnosed. Suddenly, because I knew I couldn't have the bread, cookies and cake any more, I guess I sort of panicked. I rarely ever ate cake or brownies unless someone brought them to work. I liked the occasonal cookie, but I didn't buy them very often either. The same with bread. I LOVE good bread, but I live alone and didn't buy bread every week, because it got moldy before I could eat it. I tended to eat it more at restaurants than at home. But once I was diagnosed, I was baking bread every week, trying gluten-free cake mixes and brownies. I had my cupboard jammed with gluten-free cookies, most of which I am not even very fond of. I started eating way more carbs than I ever had before, which is why I had the blood sugar problems. I only go to extremes (as described in my posting) when I know I have contaminated myself so I can get back to normal, and then I start adding things back slowly to see if I can identify what made me sick. I will eat just veggies (including potatoes, corn, sweet potatoes, and fruit which have plenty of carbs), and dairy for a couple of days (also full of carbs) until I feel better, and then I start adding meat and other carbs one at a time. Contrary to what you suspected, as soon as I restrict my diet, I begin to feel better. I have been 2 days on the restricted diet, and I feel fantastic this morning. Today, I will add something back into my diet and see how it sits. It's the only way to identify what is making me sick, since ingredient labels are unreliable. I usually have a little Dove dark chocolate, and maybe some ice cream, but I have to be careful not to overload on simple carbs. It sounds like you may be doing the same thing I did. You feel cheated, so you are overcompensating for what you lost by eating a lot of stuff you otherwise wouldn't have. As long as it doesn't cause you other problems, it's probably fine for a while, but keep in mind that you are at higher risk for diabetes than the average Joe. Thanks for your comments. We really do have to help each other, because when I talk to my doctor, all she can do is shake her head in dismay, and refer me back to "THE BAD GRAINS LIST." I celebrate every day that I feel well now. Wendy
  7. "fell Off The Wagon"

    Gee! I posted yesterday because I was frustrated. I was trying so hard to be gluten-free, and still ate something that made me sick. I haven't even considered going off the wagon on purpose yet, because I can't seem to figure out how to stay on the darned thing. However, my biggest adjustment has also been time. I am single with lots of commitments. I have no good reason to stay home, so I am used to popping frozen entrees in the microwave at lunch, and maybe at dinner, or grabbing something fast on my way between stops. Now I have to shop in like 6 different places, and I spend so much time comparing lists with labels, and reading small print, then I have to cook, and that makes a huge mess in the kitchen and dirties all the pots and pans increasing cleanup time. Like you, I don't have the time. Some things that are helping me: Bread machine with a good basic bread recipe. When I have to make a mess to make a loaf, I mix the dry ingredients for 3 loaves, bag 2 and put them in the fridge. Then I just have to add the wet ingredients and put it in the bread machine, which does the rest of the work. Cuts down on preparation and cleanup. Someone else suggested making big batches and freezing, which I thought was a great idea at first, but then I made a couple of batches that happened to have something bad in them, and I ended up flushing. But, it worked with some things, and that helped. I also love soup, and Wolfgang Puck makes the best soups, 3 or 4 of which are gluten-free. I can open a can and microwave it in 5 mins. Also, when I'm in a rush, I eat wierd stuff. A friend found Old Wisconsin Turkey Sticks for me. It's a spicy sausage stick you can take with you (good for travelling). Grab a couple and a baggie full of fresh veggies, and eat it on the way. Canned salmon (full of calcium and Omega-3) dumped on a veggie salad with some ranch dressing. I don't know if you have Lou Malnati's pizza in your area, but they make a crustless pizza just for us, and they'll freeze them for you. Put it on a gluten-free pizza crust (which I personally find unpalatable) or a corn tortilla (much better), and bake. I am looking for more time-saving tips myself, but I thought I'd share a few things that have helped me keep my sanity. Wendy
  8. To everyone who responded, thanks. I was having a bad celiac disease day yesterday. I ate nothing but veggies and a little yogurt yesterday and today I am feeling better. I'll try to respond to everyone. I thought lactose intollerant at first, and went to all veggies until I felt great, and the next day, I dumped so much dairy into my diet, I figured it would have to make me really sick if it was lactose, but I was fine. As for the gluten-free bread crumbs, it was a European manufacturer, and I hear they are not as strict about what gluten-free means, so they may have been the culprit. I am suspicious of a pizza sauce and a cheese as well. There is a small gluten-free market here in the Chicago area run by a sweet woman who has celiac disease. It's a wonderful place for celiacs, because everything is gluten free. It's so nice to not have to read every label or search through 20 non-gluten free brands to find one that is. I found the best pasta, noodles and cookies there, and even some really great cake mixes...none of which made me sick, with the possible exception of the bread crumbs. I should have just grated a slice of gluten-free bread. I have been disappointed at Whole Foods, though I can pick up a few things. Since the gluten-free stuff isn't isolated, you have to dig through everything else to find something that you can eat, unless you are shopping for fresh produce or dairy. However, they promised they are going to have fresh gluten free bakery goods soon, so that will get me there more often. I live alone, so I don't have to handle non-gluten products. I did a clean sweep of my kitchen cupboards and gave away a ton of food. I bought a bread machine and a toaster, because the lady at the gluten-free store (20 miles from me) told me all the gluten-free bread tastes better toasted. She was right. I bought cookbooks and bake my own bread, which I think is tastier and has a better texture than the rice breads I tried from Whole Foods, and it doesn't fall apart when you make a sandwich. So, I think I have taken this thing by the horns, but when I get something bad, it REALLY hits me hard now, which is what confused me. However, I just spoke with another Celiac who said after she changed her diet, when she ate something bad, it hit her harder than before as well. So, that explains why it seems to be getting worse instead of better. I guess your body gets used to the bad stuff to some extent, but after it starts to heal, it overreacts when gluten is accidentally reintroduced. That's my theory, and I'm sticking to it. I do simplify and then try adding things back in slowly. I"m doing that today. I have a few suspects in mind, so I'll try them one at a time once my system is clear of whatever I got two days ago. It's encouraging to know that I am not the only one who is having a hard time figuring this out. I also appreciated the information on how sometimes it takes a year. I was feeling pressured to get "healthy" before my 6 month retest. I'm also glad to know that it's really rare to not respond to the diet. That's comforting. I can relax and just keep working at it. I wish you all had access to a nice little gluten-free store. It's great. It might be an idea for someone wanting to start a small business. That's how this one got started. Someone's child got diagnosed, and they had all the frustrations we all have, so the father opened up a little market. It seems to do fairly well too. I dropped $370 the first visit, but I live 20 miles away, and I was new so I wanted to try just about everything to see what I liked. That's it for today. Thanks for the support. I really needed it. Wendy
  9. I was diagnosed in February, and since then, I have tried so hard to get this diet thing sorted out. But the longest I have gone without feeling sick was just short of 2 weeks. I am worried because my symptoms seem to be getting worse instead of better, and the rice-based food shoots my blood sugar up so that they are starting to worry that I am becoming diabetic. Why would I feel worse on the diet than I did before I went on it? I used to have some bathroom unpleasantry, and my fingernails were getting all groovey (not in the hippy way). Since the diet, I have found myself sooo tired sometimes that I can't function. I am becoming forgetful, and even stupid at times. I have downloaded the lists, and purchased the blue binder, and been religious about what I eat, but I still get sicker. I thought maybe it was another food sensitivity, so I went down to only raw veggies and baked potatoes with nothing on them, and I felt fine for a couple of days. I added dairy to see if I was Lactose intollerant...LOTS of dairy. I had butter, cream cheese (the kind on the good lists), yogurt, milk, and ice cream. I was fine for several days. I had been baking my own gluten free bread since about day 2, but I stopped doing any grains of any kind, so I went back on pasta and bread and meat, which I assumed would be okay, but got sick again. Then I thought maybe eggs, and made myself a big fat omelet with cheese and green peppers. No problems. Now I'm suspicious of meat, beans, nuts, you name it. I'm afraid to eat anything, because it doesn't seem to matter. I don't use any ingredients that are not gluten-free (or supposed to be). I even grind my own spices. Yesterday I had a pork chop grilled on my Geo Forman grill, steamed veggies (summer squash, sugar snap peas, and carrots), and grilled eggplant with gluten free mayo, parmessan cheese, and (this may be the culprit) gluten free bread crumbs I bought at an all gluten free store, but hadn't used before. They tasted like dirt anyway, so I can live without them, but I hate that I felt better eating all those convenient foods I ate before than I do going through all these contortions of shopping in strange places, reading all the labels, going online to manufacturers, and cooking and baking everything from scratch. My food has no flavor, takes forever to prepare, makes a big mess of my kitchen, distrupts my whole life because it is so time-consuming, and it seems to be doing more harm than good. Shouldn't I start feeling better at some point? 3 months ago I was leading a relatively normal life, and now I am out sick half the time and not much use the rest of the time. I have to support myself. This is not good. I read that some people don't respond to the diet. How often does that happen, and if that's the case, then what?