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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. Hi! Well, we did the no dairy, no gluten diet for several months with my 3 1/2 year old daughter. It was tough, but not impossible. Actually, I found it harder to keep the dairy out of her diet than gluten! Anyway, what about soy ice cream and soy yogurt? My daughter wouldn't eat the soy yogurt at first, but now she loves it. I basically just mixed it with regular yogurt...over the course of a week I had phased out the regular stuff. She loves the Silk Vanilla yogurt, which I find at Whole Foods. I'm not sure if Tofutti brand ice cream is gluten free, but my daughter loves it. I eat it occaionally as well. Especially the chocolate. Anyway, hope that helps! Good luck! Sue
  2. Hey Michelle - Sorry I'm so delinquint in responding, but I've been out of town...Anyway, I wanted to thank you for your response! The information has been very helpful. It's always nice to know there are actual facts out there! Thanks again! Sue
  3. My 3 1/2 year old daughter has had poop issues (sorry for the bluntness!) since she was about 18 months old. She's been diagnosed with colitis through a colonoscopy. She's taking medication for colitis, which is a non-specific topical anti-inflammatory for the colon. She was tested for celiac but only the IgG's and IgA's were elevated. The other two more sensitive tests were negative. The ped GI retested her again (while she was on gluten) but he only did the ttg and ema tests, both of which were negative. He's a great doc. He says without doubt she does NOT have celiac. He does feel she has a wheat allergy in addition to inflammatory bowel disease (colitis). The allergist, however, feels she could very well have a gluten intolerance. I did put her on a dairy free/gluten free diet for a few months. It was hard to say if it worked or not...she was doing well (digestively speaking) at the time, so it wasn't a huge difference. I do think she slept better. (She has night terrors every stinkin' night...I don't think she's ever slept through the night!) Anyway, my question is how conclusive are the ttg and ema tests? Any thoughts would be appreciated! Sue
  4. Sorry you've had such a long few years with all the medical testing! My daughter, who's now 3 1/2 years old, has undergone similar things. They initially dx her with a milk allergy. The elimination diet did nothing. In fact, it made her worse. (Though now we suspect a wheat allergy or gluten sensitivity...taking her milk away caused her to eat more wheat...making her worse.) Anyway, she underwent a colonoscopy which resulted in a diagnosis of inflammatory bowel disease. They think it's ulcerative colitis, but crohn's can't be ruled out at this time. I know that Crohn's disease can be difficult to diagnosis. It often presents itself as gi symptoms as well as poor growth. Scopes may not be able to reach the terminal ileum, which is often where you'll find Crohn's disease. I don't mean to scare you, but it's just something to keep in mind with all the tests. If you've kept your son's diet gluten free, and he's experiencing symptoms with a might need to look elsewhere for answers. I'd ask the doc for a stool occult test as well as blood work (sed rate/crp, cbc, albumin, hemoglobin). I'd also ask they run the celiac panel again if you're son is eating gluten presently. I hope you get some answers soon! Good luck! Sue
  5. My daughter is 3 years old. She's always been a poor sleeper, rarely sleeping through the night. However, she's had night sweats frequently as well as night terrors almost nightly. She's a very restless sleeper! She was tested twice via bloodwork for celiac disease. Initially her IgG's were elevated (52), but the others were all negative. The ped GI feels confident that she does NOT have celiac. He's diagnosed her with inflammatory bowel disease. We took her off gluten and dairy in November. She started sleeping MUCH better. NO night sweats. Night terrors still occasional, but not as frequent. She recently had back to back illnesses, stomach flu followed by a nasty upper respiratory infection. She wasn't eating much and complained frequently that her tummy hurt (meanwhile she's gluten-free). Anyway, long story short, we gave a small amount of gluten (bread, few cookies) as well as some dairy (4 oz yogurt, soy cheese) based on the pediatrician's recommendation. She felt it was more important to get her to gain some weight at this point. She's great, so I'm not knocking her. I think she feels confident in Natalie's IBD diagnosis and feels celiac has been ruled out. Okay, finally getting to my question. We decided to take gluten out again. It's only been a few days. Just wondering if any of your children have had the same sleep issues...and how long it took to improve. Any thoughts would be greatly appreciated!
  6. I don't really have any answers for you, but I wanted to add that allergy testing is not always accurate, especially for such a young child. Our allergist said prick/blood tests can help guide you, but elimination diet is the ONLY true test for food allergies. Food allergies can be associated with IgA or IgG response, not IgE response. Standard allergy testing is based on IgE response only. So, I wouldn't rule out allergies at this point. Obviously, which I'm sure you're doing, I'd steer clear of those foods and continue adding others slowly. Stay away from highly allergenic foods such as nuts, corn, soy, berries, cow's milk and eggs. It shouldn't be that hard right now since he's so young. Stick with the good ole baby veggies, fruits and meats! Good luck! Sue
  7. Hi! My daughter had a colonoscopy when she was 26 months old. She was extremely anxious about being in the hospital with all the medical staff. They gave her some versed orally, which completely calmed her. (Actually, they gave it to me to give to her so she wouldn't be afraid.) She just watched as they inserted the iv. NO crying. NO anxiety. My husband and I stayed with her while she was put under anesthesia. That was definitely the hardest part. Then we had to leave. The procedure was very quick, though she didn't have an upper gi done at the same time. She had a rough time coming out of the anesthesia, crying for about an hour straight. But, after that, she was back to her old self. I'm sure it's a lot harder on the parents than the child, especially if they can give her something to calm her a bit. The versed worked great! Good luck. It will be over before you know it! Sue
  8. Hi! I feel for you, since we've gone through something very similar. My daughter started having loose stools around 17 months. All bloodwork and stool tests were negative. We saw an allergist, who thought she had a dairy intolerance. The dairy elimination diet didn't work. In fact, she become worse. She actually had some trace amounts of blood in her stool. We ended up seeing a ped GI shortly after who did a colonoscopy. He diagnosed her with inflammatory bowel disease. However, I, along with our allergist and ped, don't think allergic colitis can be completely ruled out at this time. My daughter also had elevated IgG's though all the other tests you mentioned were negative like your son's. About 20% of kids who have a dairy intolerance/allergy also have a soy intolerance/allergy. Have you thought about removing both dairy and soy? Sounds like a reasonable plan. The elevated IgG's to anti-gliadin can simply be a "leaky gut effect." If you have any inflammation or permeability issue in the colon (related to allergies, parasites, disease...etc.) you might develop antibodies to gluten as well. The protein leaks out of the intestinal walls, where the body then creates antibodies against it. So, it should correct itself once the intestinal tract heals. We're currently doing the dairy free, gluten free diet while limiting soy as well. Seems to be helping. It's hard to tell for sure though since she's on some medication for the colitis. I assume your son doesn't have any blood or mucous in his stool? Mucous is a sign of inflammation in the intestinal tract, so it's something our ped GI checks regularly. Hope this info helps. I know it's hard to wait and see, but hang in there! You can try the dairy free/soy free diet before the scope - it won't affect the testing for celiac. It's worth a shot! Good luck. Sue
  9. I think people are misunderstanding your question. We just went through this so maybe I can help. Our ped GI just ran the immunoglobulins as well. IgE's are most often correlated with allergies. However, you can also have allergic reations with IgA's and IgG's - those are usually delayed reactions. My daughter's IgA's were double the normal amount. The allergist and ped GI said this is often the case with intestinal infections or allergies as well as other intestinal conditions. Elevated immunoglobulins won't give you specific info...they just point you in some direction. I'd guess the ped GI would want to do anti-gliadin IgA's and IgG's as well to determine if those are elevated. Keep in mind that you have IgA's and IgG's to many different things, anti-gliadin being only one of them. I hope this helps a bit! Take care! Sue
  10. Thanks for all the info! Yes my daughter does have symptoms, but she was actually diagnosed with inflammatory bowel disease. I still am a bit skeptical about the diagnosis, so I find myself questioning other possibilities. Her ped GI said she could have celiac in addition to IBD so that's why she's been tested. Her symptoms include loose, foul stools with mucous and, on occasion, trace amounts of blood. We first thought it was a dairy allergy. When we took dairy out of her diet, the blood increased. We did the elimination diet twice - the first time for 3 weeks and the second for 2 weeks. Both times, the blood in her stool increased. I know celiac doesn't normally cause blood, but I'm just wondering why taking dairy out increased her symptoms. Seems she was eating more wheat at the time to make up for the lack of dairy, so it seems logical that she was having some sort of reaction to wheat. But I guess you could also explain it by saying that gluten is tough on the can be even tougher on a damaged intestinal tract causing more blood to appear. Anyway, enough about that. Thanks again for all the info! (By the way, I thought about Enterolab, but I'm very skeptical about the accuracy of the tests.) Sue
  11. So you're saying if the endomysial antibody is positive, along with the anti-gliadin IgG...then celiac is almost certain? Well, my daughter's EMA was negative on two different occasions. Funny, the allergist said that many people can have elevated anti-gliadin IgG's, but the IgA's were the ones that were most correlated with celiac. I would definitely be inclined to believe this man - he's very knowledgable and very well respected. (He's also very open minded, which is definitely a plus!) Thanks for your reply! Sue
  12. My 3 year old daughter was tested for celiac about 6 months ago...the antigliadin IgA's and IgG's were both elevated but the reticulin and endomysial antibodies were negative. Because the antigliadin antibodies were elevated, the ped GI wanted to retest her, which we just did last week. Course they performed different tests this time, so we're unable to compare, but they did the endomysial and the ttg tests which were negative. Her total IgA's (not antigliadin specific) were actually elevated, so she's not IgA deficient. Just wondering if I should interpret this bloodwork as an absolute negative. The allergist did suggest trying a gluten-free diet due to the possibility of a wheat intolerance instead of celiac. Just wondering what your thoughts are! Thanks in advance! Sue
  13. Just a general question since you're both talking about skin reactions...can celiac cause eczema? My daughter has it, mostly around her mouth, and it seems to be getting worse. We haven't gone gluten-free yet because the ped gi wanted to retest her bloodwork...her igA's and igG's were elevated but the other two were negative. Anyway, just curious! Thanks! Sue
  14. Hi! You mentioned you went to the doc because of some bleeding...just wondering what kind of bleeding your son experienced? I just ask because my daughter had some blood/mucous in her stool and the ped GI said that celiac does NOT cause blood in the stool. What did your say? Thanks! Sue
  15. I just wanted to add something in the doctors' 3 year old daughter has been undergoing testing the past year for loose, foul smelling stools. We've seen two peds, two ped GI's and an allergist. She had a colonoscopy which showed colitis. Amongst many other tests, they did the celiac panel which showed elevated IgA's and IgG's, though the other two were negative. Anyway, it's possible to have elevated anti-gliadin antibodies due to the "leaky gut" effect. If you have any inflammation in the small bowel or colon, food proteins can leak out. You can then develop antibodies against the food protein circulating in the blood. Once the inflammation in the GI tract subsides, this effect should subside as well and the antibodies should decrease. I'm not 100% convinced of my daughter's diagnosis, though the docs have been great. We are retesting her celiac panel next week to see if the numbers have decreased now that she's on anti-inflammatory meds for her colitis. (By the way, her symptoms have improved significantly.) Anyway, I just wanted to pass this bit of info along...Hope this helps some people understand a little better! Sue