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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? - 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Joyful joanna

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About Joyful joanna

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    New Community Member

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  • Gender
    Female
  • Interests
    Spending time with my best friend John my husband of 46 years. My seven dogs, two cats and a pet squirrel. Cooking and baking gluten free, a challenge I love, making delicious nutritious gluten free food. Gardening, growing flowers, vegi's and herbs. Canning jams, jellies vegetables and fruit in season. Reading British novels, I am an Anglo-phyle. I am a beader who loves to design and make jewelry.
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    I live in the southeast, near the blue ridge mountains. A "dyed in the wool southerner".

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    joannadavis44@att.net
  1. Yes, this is correct. I feel safer just not buying their products in the future. I am 73 and a very sensitive Celiac with many allergies, so I must take care of myself. I am waiting for a reply to my email to Udi’s.
  2. You are correct Ennis. I have given up eating out. Unless you are in the kitchen, you just do not know what is happening there. Sorry you cannot eat Udi products either, just for a different reason. I had read online at another site that their factories were not dedicated factories. I think my issue with their bakery products is the sodium alginate. Really liked their products too. I am allergic to shellfish and IV contrast dye made with shellfish which contain iodine. Had anaphylactic shock to IV contrast dye and an iodine based gastric contrast media after surgery for a para esophageal hernia repair, nearly died both times.
  3. I am having problems with Udi bakery goods. I have explosive diarrhea, joint pain every time I eat Udi products. I know they are no longer made in a dedicated factory, so cross contamination may be a problem. Also, I react to anything made with seaweed, MSG, carrageenan, agar and alginate. I noticed recently that they have added sodium alginate to all their bakery products. Maybe this is the problem for me. Why in the name of common sense do we need to add a seaweed derivative to bakery products. Goodbye Udi’s products. You have just lost a customer. Anybody else out there having similar problems with Udi products? I have emailed Udi’s about this, but most “gluten free” companies do not want to hear from Celiac’s, and their response is usually patronizing at best. Had a bad 10 week autoimmune reaction to eating off the gluten free menu at the Cheesecake Factory, even with specific instructions to the server and the cook who prepared my chopped salad. The company would not tell me if their dairy products had carrageenan in them, that is a yes. Serious cross contamination of their gluten free cheesecake, baked in the same ovens and stored in the same refrigerators. Eat there at your own risk! I suggested a red sticker on menus discouraging Celiacs from eating in their establishments. No comment!
  4. Cross contamination is a big one, Tyler is correct. My husband and I have separate toasters, peanut butter jars, margarine tubs and only buy safe condiments in shake or squeeze bottles. I use parchment paper or foil on all baking sheets. We use the sanitize cycle each time we use the dishwasher. We even have double ovens to safely bake or roast gluten free foods in one, gluten foods in the other. Counter tops are another place for cc to take place, butcher paper is a great idea, or waxed paper. Do not trust gluten free labels on food. Read the ingredients, so many are Misbranded and contain gluten or are cc in the factory. A thought that I had if you are also cold all the time, you need a COMPLETE thyroid panel. TSH, T3 and free T4, in other words the whole nine yards insist on a complete thyroid panel. You may be hypothyroid so many of us Celiac’s are. Depression and fatigue are symptoms of low thyroid. Have you been tested for iron deficiency anemia. Your hemoglobin or hematocrit May be low. Most celiacs have iron defiency anemia.
  5. Look at carreggenan. I am a super sensitive Celiac and have the same auto immune reaction to anything made with seaweed, “the wheat of the sea”, such as MSG, carrageenan, agar and sodium alginate. The food industry is putting it in everything, even so called Misbranded gluten free foods. Even some coconut milk brands now are using it as are nut milks. It is a cheap emulsifier, so we do not have to shake things up! How about shaking up my whole body from it! You may have an iron defiency anemia not being treated or tested. Cookbook doctors treat numbers not patients clinical presentation. I have fired five doctors in eight years for stupidity and dangerous lack of clinical acumen which could have killed me. Do not be afraid to ask questions and confront doctors, you are after all the customer paying for their services. Eat clean, meaning preparing your own foods. Stay out of restaurants! Gluten free is a joke in most restaurants if you are a celiac. And will cost you weeks of illness. Hang in there. Make bone broth, it has super vitamins and minerals and loaded with pre and probiotics. Go to Dr. Axe’s site. I only do chicken made with feet. I am allergic to beef since being bitten by a deer tick in 2011 and getting Chronic Lyme disease. The chicken feet bone broth is also loaded with calcium and is yummy. Takes a little work, but is well worth it. 😊
  6. Have Celiac...DON'T CARE!!

    Get another opinion on your gastric sleeve. In 2014 I was Dx with a giant para esophageal hernia. In other words my stomach was in my chest. I had a surgery to pull my stomach back into my abdomen. Two months later I am suffering. Collapsed left lung, vagal nerve compression and now my stomach was back in my chest pulling my small intestine into my chest. My heart was being irritated by all this. I had tourtion of my stomach. Long story short I saw a thoracic surgeon at John's Hopkins Hospital. The following day I had a five and a half hour surgery to save my life. The first idiot surgeon had stitched the top of my stomac to my diaphragm. Two years prior to this I got bitten by a deer tick and got chronic Lyme disease. I am now allergic to red meat, carry an epi pen. A year before tHat I was electrocuted getting out of my swimming pool with resultant burns, cardiac issues etc. The electrician said I should be dead, but I survived. And, I was Dx with celiac disease at 71! Talk about big adjustments. Times are very difficult for you right now. I am a retired psychotherapist and I think you would benefit from some cognitive behavioral therapy. I am a super sensitive person too, so I have an idea about how you are struggling. Do not give up! Get a second opinion. Something seems amiss with your sleeve, get it checked out. Withdrawing from gluten was very difficult for me. My body reacted horribly, but I got through it knowing that it would get better, and it did. I have the same autoimmune reaction to carraggenan. It is made with seaweed, the wheat of the sea, and the food industry is putting it in everything as a cheap emulsifier. Read your labels, you may be reacting to carrageenan too. MSG is also made with seaweed. Please do not give up! I have fired seven doctors in the past 10 years to get a great group of doctors that think outside the box and are not "cookbook doctors", they are a dime a dozen. Push on keep looking for answers. Put on you brass bra and confront the bad behavior you are encountering from the medical profession. Question, question, question. Good doctors welcome an intelligent well informed patient. It is the flakes that don't want to answer question or give sane explanations. Hope this is helpful. The world needs all the intelligent, sensitive people we have in it. Good luck!
  7. Everything you are saying is indicative of celiac disease. Empirically speaking. I had three weeks of the worse anxiety I had ever had following giving up gluten. It was like a horrible withdrawal. My insides felt like they were shaking and I jumped at the slighted noise. It began to subside after three weeks and I emerged from it feeling better than I had in 40 years. Hang in there, it sounds like gluten withdrawal and it does go away eventually. My body was reacting to not getting any gluten. But, it was worth it. I have been gluten free for a year and a half. I cleaned out my pantry, sterilized my kitchen and have learned to cook and bake gluten free and make easy delicious and nutritious meals and food for myself and my husband who eats glutenfree meals I make. Gluten free is an adjustment and a definite learning curve, but you can do it! I also have an autoimmune reaction to the wheat of the sea, seaweed products. They are putting carreggnan in everything. You might be sensitive to that too. It is made with seaweed as is MSG. DO NOT EAT AT THE CHEESECAKE FACTORY! I got glutenated there off the gluten free menu with specific instructions to the chef about preparing my meal as I am a celiac. Worst autoimmune reaction I have ever had eating out. That is my biggest challenge. Hardly anyone understands celiac disease in the restsurant industry. Try going gluten free again after you have had the testing done. Just know that your anxiety may worsen with gluten withdrawal, but then it will get better! Good luck.
  8. HELP PLEASE!! SYMPTOMS?

    Look at carreggenan. It is made with seaweed, "the wheat of the sea", I react to these products just like gluten, as do many celiacs. So is MSG, alginate and agar. Check your dairy for these. Even nut milks are adding carreggenan, soups etc. I am an extremely sensitive celiac, Dx at 71. I react to anything with these products in them like I have gotten gluten. Restaurants use carrageenan as an emulsifier in salad dressing, butter and sour cream, and they will not tell you, I have asked. One fish restaurant had a bowl of margarine, sour cream, half and half and butter, all contained carreggenan, it was on each label of ingredients! Celiac is a complex disease. I have spent the last two years researching celiac disease, through the Mayo Clinic, Columbia University Medical Center and the University of Chicago. Gluten is hidden in flavorings, food starch. I called the folks who make Lean Cuisine and told them that most of their gluten free meals contained hidden gluten. Their response was to send me coupons to buy more. Carraggenan is also in toothpaste, so read the labels. Crest Pro Health was one I reacted to. They too sent me a coupon to buy the one and only toothpaste that Proctor and Gamble makes with out carrageenan. Processed foods are the worst. Read labels even the ones that claim to be gluten free lie and are made in factories that foods are cross contaminated in. Cherrios is a good example. General Mills refuses to consider cross contamination. Be careful out there, even wild caught salmon may have red dye made with gluten. You have to be hyper vigilant. i just got glutenated at the Cheese Cake Factory, after carefully going over with the server and the chef restrictions. The worst I have been glutenated in two years. My bone, muscle and joint pain was so bad I have had to take Tylenol around the clock. My life is in the toilet for the time being, pun intended. I am so bloated I can't fit in my clothes and my face is swollen too, have brain fog. It is a jungle out there. But, there is light at the end of the tunnel. Know yourself and your body and do not let "cookbook" doctors tell you. Keep searching, there are some good doctors out there, but you may have to fire a few like I did to get answers. Good luck!