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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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  1. I have two daughters who were approaching age 4 when we were introduced to the entire gluten-free terminology. One of them WAS very sick. Her bloodwork was clearly positive and she did have the biopsy. Simply because the bloodwork was SO high they intended to find a lymphoma in her instestines. The other, who was not showing symptoms had the blood testing done. She too was positive. We chose not to have the biopsy done with her. We chose not to for a few reasons 1) I myself was having surgery for an unrelated matter and 2) going gluten-free was something we were going to do anyway since both were positive, I didn't feel I needed to have the biopsy paperwork on both of them. If you feel that you will be eligible for the 7.5% medical tax deduction on medical expenses (visits, surgeries, price of gluten-free food compared to regular) the biopsy is confirmation that the diet and special food is a medical necessity and not something you "think" your child would need. However, at the age of 5 we have already gotten a hard time from my husband's insurance company. They bawked a bit at covering the one with the biopsy since there was a "pre-existing" condition. We had to have her GI write a letter stating that on the gluten-free diet, the condition would improve and pose no more than normal health related conditions as long as it was adhered to. So, I suppose this is really what YOU prefer. No real right or wrong answer in my opinion. Whatever is best for your family.
  2. Testing for Celiac, waiting for the results, Daughter 10, new with questions, 1- Yellow poops, sometimes frothy, sometimes diarrhea, firmer after with enzymes, but still yellow to tan, never normal (brown and firm). Been like this forever, I thought this was a toddler thing years ago, (yes, I know....) We had pale sand colored poops with one of our celiac daughters before being diagnosed. The firmness was never consistent until 4 months after being gluten free. 2- Eats (craves) gluten foods. Yesterday, craved oatmeal, she had two bowels for breakfast, for lunch craved pasta, 2 1/2 bowels, very hyper all day. Today...... very, very, tired. She gets hyper with gluten, and then the next day she gets very tired. Has leaky gut with lots of food allergies. She is also irritable, whiney (bi***), complainey, etc......Sheesh..can be exhausting color=#FF0000]Ahhhh....yes, we had this too. My daughter seemed to eat only gluten foods.....that was all she asked for and those were always a sure fire win if I was looking for her to eat. Her activity level was awful. She'd trail a block behind our other daughter while bike riding. She too was awfully crabby. Does this sound Celiac familiar? I suppose it sounds familiar because we experienced it first hand. However, the process for us took about 1 year to get her diagnosed. We did allergy testing to see if it was another food "allergy", blood testing, biopsies etc before getting her completely diagnosed. Now myself, I haven't been officially diagnosed as my tests came back inconclusive (I've been investing so much time in them, I haven't taken care of myself yet). I can tell you that if I eat chief complaint is the tiredness (sometimes referred to as brain fog on this board.....and it is noticed in me about the second day. Depending on your testing, you should really get some answers soon. My daughters blood work came back very positive and she had the biopsy to confirm Celiac. The other daughter just had positive blood work. Between the complete blood panel testing, biopsy route (if chosen), gene testing etc. I hope you get some answers that lead your daughter to feeling better very soon!
  3. I have twin daughters who were diagnosed 13 months ago. Only one was showing symptoms and had the biopsies. In all honesty, it was hard at first. Those first weeks especially. I thought things were improving and then she'd have diarrhea again. I don't think that part of the disease improved until she was 4 months gluten free. I will say that those first weeks drove me crazy because I looked at everything she came in contact with to make sure she wouldn't get contaminated indirectly away from home. I think I slipped up one time but her cross contamination came mostly at school. Please email me if you'd like to write more about this. Between the two kids, this IS hard but you can do it. That same daughter who had symptoms gained 13 lbs since going gluten-free. Alot of that came within the first 6 months. She is SO much healthier. I hope your son gets relief soon as he continues on this path of getting better! Fingers crossed some relief comes this weekend so you guys can have some fun! Christine
  4. My 4 year old daughters were diagnosed last December (9 months ago now). Long story short, we were gluten-free right away but with one of them, it took a good 4 months for the poop to be "regular". I knew she wasn't getting gluten. I kept food diaries, etc. However, nothing was showing a reaction to something else such as dairy etc. I didn't know it until about 5 months into it but I called the GI and asked the nurse to read the pathology report from her biopsy. It said she had complete villi destruction. Basically she had severe damage to her intestines. I guess what I learned from this is that for us.....with that much damage, it took her that long before the poop situation was fine. During that time though, we had imconsistent bowel movements. Just when things were fine, she'd have a loose one and I'd be scratching my head trying to think of what she got into. Something I can say is that despite the inconsistentcy, she gained weight very quickly and now 9 months later, we are 10 lbs heavier! So have faith! Christine
  5. celiac3270, I sent an email to you but must have my head in the clouds and didn't include the address. It is: Thanks SO much! These lists will be great!
  6. When we had my girls tested, they did it in two rounds. The first was the testing that was ordered for you. Their ped. had no idea what could be the problem. The only thing that came up positive at first for them was IgG which I didn't see. The second round run by a GI was Anti-tissue Transglutaminase Antibody (tTG), Anti-Endomysial Antibodies (EMA), IgA: Anti-Gliadin Antibodies (AGA), IgG Anti-Reticulin Antibodies (ARA) These came up positive. Initially, they thought they had a what "allergy". The second round of lab tests (which were positive) and a biopsy confirmed the celiac.
  7. We're newer to this board. Eventhough I have celiac twins, I can confidentally say that even many not cheat or try to sneak anything past anyone. I have been amazed at how they seem to "like MOST" of their gluten-free foods and snacks. This was a good question celiac3270.
  8. Doug, This situation is identical to what we experienced with one of our girls. Ironically, she was the larger twin, almost 7 1/2 lbs. She grew at a somewhat consistent rate (nothing causing concern) until about 2 1/2. She weighed 27.5 lbs for over 1 year! We went to the doctors a few times. Initially, we were told to increase her intake......then to change her vitamins. Finally, just before her 4th birthday, she forgot to flush one time and I noticed a sandy colored stool. I noticed she had to get up from the table and go to the bathroom many times a day. Her skin looked fine with the exception of the beginnings of dark circles under her eyes. I finally told the doctor that I would like some blood testing since everything we have tried hasn't worked. She did the blood testing which came back positive. We were referred to a GI who did the biopsy and confirmed celiac. The only reason I wrote all of that was to say that in 4.5 months of being gluten-free, she's gained 6.5 lbs! She is so much healthier! It's definitely worth getting him tested. Fortunately, the blood testing comes back relatively quickly and you can make a decision from there. As the others said though, it's so important for gluten to be eaten each day until testing is complete. It is hard to do if you believe it is making him sick but hopefully everything will go very quickly and if he is celiac, he can get to feel better soon. Christine
  9. Yes, just before Thanksgiving.....I went in for the same type of pains you describe. It kind of felt like a "twisting" on the upper right side. This was coming not too long after me having mono so they thought it may be connected (the inflamed spleen putting pressure on other organs). Before they figured out it was the gallbladder, I took everything from phenergan to zofram for pain....none of which helped since it wasn't nausea! The CAT scan showed stones and I had surgery scheduled for a week later. I got the flu in the meantime and had to reschedule the surgery. The gallbladder ended up getting infected and I had emergency surgery to remove it. Christine
  10. We had a situation about 2 weeks ago where one of my daugthers spiked a fever of 105.6. Diarrhea as well. We finally ended up in the ER and they "claimed" that both ears were infected. Apparently infected enough to cause vertigo type symptoms (although she never complained of being dizzy). She did get antibiotics and the diarrhea subsided but not until about 4 days later. I've spoken with her GI specialist twice about fever/diarrhea and possible gluten accidents. He claims that while gluten accidents can cause a wide variety of symptoms, some of which are severe.....the gluten will not "induce" a fever.
  11. I agree with the others about finding another doctor. We have Cigna and they are covering ALL testing. I called them the other day and inquired if they would cover gene testing (since our two daughters have celiac) and they would if the doctor orders it and we have the testing performed through a covered lab. I would call your insurance company and ask them your specific questions. They'll be able to pull your plan up and tell you exactly what's covered. Then, you can at least tell your NEW doctor that you've spoken to them and since the testing will/won't be covered, you're hoping he can do full testing to figure out that it's going to take for you to feel better. A good doctor will be on your side not a know it all who dismisses your concerns. Good luck!
  12. "fell Off The Wagon"

    Ya know.....ironically, I asked the same question here about a week ago. I'm still undergoing testing but my daughters are celiac. My incredibly strong willed husband and father in law admitted to me yesterday that if given the need......they would have a nearly impossible time making the adjustment to celiac. So, you are definitely not alone in how you are feeling. When I posted with your same question about coping, those how responded reminded me that celiac is the one autoimmune disease that they have an answer for....unfortunately no cure. My daughters are 4. They are twins with celiac. One of them was so incredibly sick (complete villi destruction), they told us that her chances were extremely high for developing lymphoma within one year unless she followed a gluten-free diet immediately. With that in mind, I've had to carry the responsibility with keeping her and her celiac sister healthy. We are ALWAYS on the go. Hectic, in this house is an understatement. I can completely empathize. What I've found that helps is preparing meats, meals, etc. and freezing them. It's easier to reheat a serving of chicken stir fry than cooking it from scratch on a day that seems way too long to begin with. I take a few hours (usually 2) on a weekend and cook the entire time. I figure as long as I've got the oven and stove on, I'm going to work my butt off so during the week, I can have a chance to breathe....much like you sound like you'd appreciate. Aunt Candice makes protein bars. The double chocolate ones taste non gluten-free and things like that can be great on the go and can hold you over on your way home, in between meetings, etc. Although gluten-free items are much pricier and many taste very different, there are LOTS of mainstream items that fortunately taste great despite being gluten-free. Kraft, Ben and Jerry's etc. It's being able to have those products that helps me deal sometimes. I think that also helps my favorite two little girls realize that eating a tad different isn't that bad. When you feel it IS that bad, perhaps grab something mainstream that is gluten-free and appreciate being able to still have those things. The alternative is so much worse. There are so many people out there with celiacs that were so, SO sick. Many have gotten their lives back after making the gluten-free adjustment and becoming healthy again. You CAN do this! It's alright to cry and get discouraged. Although it might not feel like it now, you're gaining strength and knowledge everyday and this board can help you through the days when you forget that. Now go grab something good to eat!
  13. I just called and spoke with Roseanne, a rep with Malt-O-Meal cereals. The four cereals they have currently being gluten-free (Corn Bursts, Puffed Rice, Fruity Dyno Bites, and Cocoa Dyno Bites) will have a recipe revision come summer of 05. They will be adding wheat starch as a last ingredient. She couldn't confirm that exact month the change will take place but mentioned the ingredient change will note wheat starch on the bag label. There used to be a nutritional question on their website stating the above were gluten-free and I noticed that too has been removed so that confirms the change is around the corner.
  14. With my girls being 4, I too was very concerned with what to feed them when we began the gluten-free diet. The EnviroKids cereals are a favorite of theirs. The Gorilla Munch resembles the mainstream product Kix. There is also a PB Gorilla Munch as well as a Frosted Flakes that are gluten-free. You may also come across information about Malt-O-Meal cereals. Malt-O-Meal had three mainstream cereals that are gluten-free, Corn Bursts (like Corn Pops), Puffed Rice, Fruity Dyno Bites (like Fruity Pebbles), and Cocoa Dyno Bites (like Cocoa Pebbles). In December of 04, they had this information on their website but I've read recently that the cereals aren't gluten-free any longer. Infact, I just checked their site and the question about gluten-free cereals is no longer mentioned under Nutritional Questions. I just spoke with a rep and she said that come the summer, they will be starting to add Wheat Starch as an ingredient. So I'd stick to the EnviroKids. I purchased the book "Incredible Edible Gluten Free Food for Kids" by Sheri Sanderson and I actually use it alot. Good recipes for Apple Fritters, Coffee Cake type things. I'll be glad to share the recipes (just email me if you'd like them I also usually prepare a batch of gluten-free waffles and freeze them. I can usually get about 10 waffles from a recipe.
  15. Depression

    I'm currently taking Zoloft 50mg. My GI doctor suggested I take Zoloft also since the serotonin is not only utilized by the brain but the GI tract as well. I never heard of that before but hey.....I'm not a doctor (although I feel like I'm studying to be one sometimes!)