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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.

Watching Diet And Still Getting Sick
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11 posts in this topic

Okay...I'm still having problems of late.

For example. I have had Corn Pops (old recipe) for breakfast the last couple of mornings (not this morning), and then I get a belly ache and the resulting diherra. Yesterday, I skipped breakfast and then had them for dinner and same thing.

Today (Saturday) for dinner, I had a hommade hamburger pattie (no crackers no nothing in it), and some Ruffles (also safe) and a glass of water. For desert, I had some gluten, wheat, and dairy free cookies. I *still* got sick. Tummy was a little naseous, plenty of diahreea to go around, ect.

I've still got a low energy level, and often feel the need to have naps during the day, no matter what time I get up. I'm losing weight, but only because I'm workingout and watching what I eat like a freaking hawk.

I've been getting over a cold, complete with sinus drainage, but what is wrong with me? Would it hurt to go back to the doc? I'm starting to think this gluten free thing is for the dogs :(.

-Kel

sick and tired of being sick and tired!

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Hi Kel,

Corn Pops are not gluten-free, so that's what probably caused your reaction which may take a few days to recover from. Alot of people on this site have mentioned eating them, and I've tried to warn people: I called the company, and at least in the U.S., they are not safe for us to eat. They are run on the same lines as all the other wheat and gluten filled cereals, and are cross-contaminated.

I also have diarrhea despite being gluten-free for 7 months, and my antibodies are still present in my blood work. So I'm not close to being 100% better yet, either. For some of us who have suffered alot of intestinal damage it does take time. If you're really concerned, go back to the dr. In the meantime, keep learning everything you can about the diet, watch for cross-contamination, and call all the manufactuers you can.

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Kel,

I was still having the same problems as you going gluten free. I started noticing relief when I cut out processed foods as well. Chips, cookies,, ANYTHING processed seems to upset my system. It's hard having to make everything from scratch to put in your mouth when you don't have the energy to do it, but it's getting better.

Hang in there. Don't give up. It took me several weeks of eating this way to feel an improvement.

Blessings

Lily

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Kel,

I know you're not feeling well anyway, but it's not a good idea to skip breakfast and just eat Corn Pops for dinner, or eat a hamburger and Ruffles potato chips, and nothing else...small wonder you're not improving! If you are still having diarrhea problems, you should be eating plain foods like rice and bananas, maybe some gluten-free chicken broth (many organic brands like Imagine and Health Valley are gluten-free. or make your own chicken soup) -- never potato chips while you're still not feeling well or new to the diet! Greasy foods (especially foods high in preservatives, additives like MSG, or trans-fatty acids) will always aggravate the stomach and intestine, especially if there's trouble there to begin with. (Imagine you had a stomach bug instead -- would you feed yourself potato chips?) I have only been doing this about 6 weeks but I find I have to be extremely careful about what I eat, because my body is still very sensitive and seems to react immediately -- and I'm not just talking about gluten, either. From what I'm hearing, and experiencing, recovering and getting adjusted to this diet is a long process.

Try eating just whole foods for a few days and see what happens. Avoid fatty meats like ground meat and go for plain grilled or broiled chicken instead. Try corn grits for breakfast (sweetened with a little pure maple syrup, and it's good with soy milk) -- you can make it in a microwave in about 3 minutes & it's filling and good. When you start feeling better, add some fresh fruits and vegetables. Stay away from soda (if you drink it) and lactose for a while. I agree also about avoiding processed foods -- they really do make most people with celiac feel worse. If you need help figuring out things to eat, get one of Bette Hagman's Gluten-Free Gourmet Cookbooks for ideas. They've been a huge help to me & others. Hope you feel better soon.

Ellen

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Kel, I know it can be work, but your best bet is to stop with the packaged foods. No boxed cereals, no cookies, and no premade patties (if they were, you didn't say). Fresh produce and meats, and spices. There are still plenty of things that don't take too much cooking (depending on your tastes), but it's the easiest way to eliminate the variables you can't control in packaged foods.

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Cheap to try - really helped me.

Have been gluten-free 4 months and still trouble. Began "graphing" how I did each day, Bad, Fair, OK, Good. Graph going up and down, up and down, etc. Began drinking spring water or reverse osmosis purified water on Mar 23. Every day since then with exception of today (Fair) has been (Good).

Skin problems clued me in. Chlorinated water/soap/alkalinity causes me problems. Why it took me 5 mo. from dermatologist telling me I was "alkaline sensitive" to figure it out I'll never know. I used to work (9) years on hot tubs and spas, think of the exposure. With them, acidity was reason for alkaline chemicals to be introduced to the water.

Different brands of bottled water have different alkalinity/acidity (ph) levels, if you call you can find out the ph level, and pick the one you want or even mix to get the desired ph level.

Chloramine (used here) causes my skin oils to greatly thicken, they can't flow, they back up, subsurface bleeding begins, and then it gets worse. What does it do to my internal tissues? Scary stuff.

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Kel,

I see lots of people recommending chicken, but if you look closely at most grocery store chicken, it is injected with a chicken broth solution (to make it juicy when it cooks) and I won't touch it with a 10 foot pole. I don't trust anyone coating or braising, injecting anything into my food.

Are you feeling any better?

Lily

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I see this come up time and again, about chicken (and other meat) being injected with gluten to make it juicier, or whatever, and it really isn't true. I spoke to someone at Perdue, who verified that any plain raw chicken that they package (whole or parts) has absolutely nothing added to it. They also have a gluten-free product list which they will send you (check their website). Of course, you can't use any of those breaded or prepared chicken products, obviously. The only other poultry I've ever heard of which has gluten injected is self-basting turkeys and yes, that mixture contains gluten.

Fresh chicken, meat, and fish should never pose a problem for anyone with celiac disease, and I have confirmed this through various sources, including the Univ. of Maryland Celiac Research Center. If you are having reactions to chicken or meat, I would consider it coming from another source besides the chicken or meat itself.

Ellen

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Corn Pops and Ruffles are two bad things to be eating when you're trying to heal. Lays has a notorious problem with cross contamination and the old Corn Pops is the same. Go back to plain, good, unprocessed food for a while. And eat a more balanced diet.

As for chicken, I can understand if people don't want some of the added sodium, but the flavor enhancers, broth or whatever else that's added to some poultry simply does not have gluten. If those solutions contained wheat, rye or barley they would, by law, have to be clearly listed. See this web site: http://www.fsis.usda.gov/OA/FAQ/flavorings.htm I called the 800 number at the bottom to confirm this myself.

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Hi all,

First, thanks for the suggestions. I have stopped with the chips and corn pops for now. It's been enough days that my body is usually over things and it's still not.

I found out that my mom has colitis, and am going to check with the doc about that. I can have some gluten things and not have a problem, but can also have a so called "safe meal" and still get sick. I know it's not just my body being mad about somethig I had earlier in the week, just knowing how fast my body gets over things like that.

I am going to remain gluten free for a while and see if it helps though. I can give up certain things to feel bette :).

I've got permission to try to add some gluten back in, since I was never diagonised celiac, this was just to see if my tummy would settle down. For the most part it has, but I am currently back to my old tummy and first big meal of the day going right through. Yesterday, I had a fresh pork loin (small), straight from the grocers meat case, and still had issues. I know that our local grocery store is serious about food allergies and will do anything to prevent cross-contam, so that's not an issuse at all.

-Kel

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Kel:

I don't know your history or how many tests or doctors' visits you've been put through so far. But it does sound like something's going on, maybe even instead of, or addition to, the celiac. I'm sorry that you're still having trouble eating. I hope that you have a good doctor, and that you can get to the bottom of what ails you soon. I know how discouraging it can be to feel sick all the time. Not that I am a big advocate of being tested up the wazoo, but maybe you do need to have your digestive system looked at more closely to finally determine what's going on. I wish you a quick recovery.

More on the chicken: Bell & Evans confirmed (as did Perdue) that as I thought there are no added ingredients to their raw poultry. Here's their email response to my query:

Thank you for contacting Bell & Evans. Our fresh, raw chicken products contain no ingredients but chicken. There are no flavorings or preservatives added. I hope this information will allow you to continue to enjoy our chicken.

If I can be of other assistance, please do not hesitate to contact me.

Susan Ranck

Quality Assurance Manager

Bell & Evans Poultry

717-865-6626

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
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    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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