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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. Sorry I wasn't very clear. Younger son is gluten-free. He is 3yo, undiagnosed and in limbo land and has tons of food allergies as well. At one point, he tested very low pos for wheat allergy. Now all tests are neg, but we can't get past two days of trialing gluten. The rest of the family eats gluten. I refuse to go into limbo land with everyone else. It is very frustrating not to be able to even have a diagnosis. Older son is the thin guy and the one who goes and eats my oats. It is truly wierd. He can have a full dinner and still go in there and eat stuff. It is usually things like cereal and oats. He has always been thin and at this last appt. has only gained 5 lbs in two years. My other kids do NOT look like him. They are thin, but they have fat on them.
  2. Can anyone tell me if the sed rate is always high if you have Celiac? My middle ds (8yo) is very thin. He always has been. Lately, he looks thinner than before. He has maintained a 25% for height, but has dropped down to 3-5% for weight. He eats like mad and I am sure he could out eat me!! In addition to meals we have, he will go in my cabinets and eat wierd things. His favorite thingto get into is oats. Plain, dry, uncooked oats. He has no body fat on him. To make a long story short, we have a younger son who has extensive food allergies and is also gluten free. He no longer tests positive for wheat allergy, but glutinous grains cause behavioral issues. We suspect abdominal pain and Celiac, but he has now been gluten-free so long that our feeble attempts to reintroduce it have lasted only a matter of days. I meant to say we are waiting for blood test results. No celiac testing. Just CBC diff and Sed rate.
  3. Thanks so much for this reply. This answers some questions. If the rash returns, I will definitely be speaking to the dr about it and asking for a biopsy. I know I should have asked way back then. I am sure if ds gets sick from the wheat that the dr will listen to me when he sees how he gets.
  4. I do know that Celiac and Allergy are different. The problem we are having is that all allergy tests are coming back neg. The pos test was only sligthly pos and I suspect it was a false pos. His reactions have never been immediate and are all GI (mostly lower GI). I am not sure what IS going on. I have read about gluten intolerance that is NOT Celiac. At this point I would really like to rule it out or find out for sure what is the problem. The allergist is no help with this problem and is pressuring us to give him wheat. I can't see a GI without the ped telling us to. I have decided to give it to him, but I need to know how long it is necessary before the test is valid. I do believe that wheat could be a problem without him having Celiac, but with the wierd blistering rash and the Hashimoto's and other Autoimmune diseases in the family, I am suspicious.
  5. I am a mommy to 6dc. I have Hashimoto's and my middle dd does as well. I am posting for some direction. Our 3yo ds has multiple food allergies. When he was about 13mo, he was tested and wheat was positive, but much lower compared to all of the other foods that he was positive to. We kept wheat in his diet for awhile, but eventually took it out due to vomiting and diarhea. We tried Spelt and he screamed all day long. I took wheat out, but gave him other glutenous grains. He would not eat rye after while. Barley was the only grain that he seemed to sometimes tolerate. I began reading about wheat allergy and gluten intolerance. About this time, he developed a blistering rash on his bottom. I took him to the ped and he dx impetigo. After two unsuccessful courses of antibiotics, I decided to treat it on my own. Several people told me that impetigo is highly contagious. None of the other 7 people in the house ever had it. I read about impetigo and noticed that he did not have the classic yellow oozing and crusting. I DID notice a usual pattern. I could see places on his bottom where I knew the sores were going to come up before they were sores. Then the sores would come, blister, then were open sores, and finally they would heal and then go away. The more I read, the more they sounded like DH. At this point, I took him off of gluten entirely and the sores disappeared. Last Jan, we did a wheat challenge as both his skin test and RASTs were neg. He did well until the end when he became very irritable, but I chalked it up to the fact that eating a box of plain shredded wheat and being stuck in the drs office all day is not fun. We came home and began feeding him wheat. I had to make everything that he ate due to his allergies. We did this for several weeks. I noticed a behavioral change in him, but though it was most likely due to his age (2yo at the time). I have episodes of flu-like symptoms and pain (which we are not sure of the cause) and so I was unable to make wheat foods for him for 2wks. At about the 2wk mark, I suddenly noticed that ds was happy!! Looking back, I saw how he had been rolling on the floor crying. I would pick him up and he was unconsolable. He would bite my other children for no reason. When I commented to dh, he said "I am sure he was having abdominal pain!!" He has once again been gluten free since. My allergist wants ds on wheat. I really want to have him tested, but I know he needs to be on wheat. I have 3 other children (all on wheat) who I am concerned about, but nothing they have warrents a scope IMHO. One dd has been tested twice with the Ttg test and was found to be normal. I stil wonder about her. She is below the 5th % for height. I gave him wheat for the first time today in a long time. I have decided that I will give him wheat until I see problems and then we will go to the ped and talk. I hate to see him go through this, but I feel it is what I need to do How long before I can expect to have a valid test? Should I keep a diary? How do I convince the ped to test him after I have put him back on wheat? I am hoping that if ds comes back pos, then we can figure out if this is the problem with my other kids.
  6. My 10yo dd has been having problems with her belly for at least 5 months now. She is very thin and the shortest kid her age. She was dx 3 months ago with hypothyroidism. I have Hashimoto's and I suspect the same with her. She eats gluten and wheat. We also have a 2yo who has food allergies (including wheat). He does not eat wheat, but we are not strictly avoiding gluten. He gets nasty, itchy blistery rashes on his bottom (the do not ooze, but bleed). It has a definite pattern of progression and usually goes away eventually. It is NOT yeast. He is our 6th child and I know what yeast is. His ped thought it was impetigo, but no one else has ever gotten it from him and it does not ooze. It also goes away on its own. While researching this, I ran into Celiac and DH. This is when I began suspeccting problems with dd. Over the past year, she has begun problems with her thyroid, has poor tooth enamel, gets frequent sores in her mouth and on the corners of her mouth, has begun to complain about her belly. She frequently says she is hungry, but other times will not eat because she feels nauseated. Her belly either hurts her or feels "funny." I do not think these are female issues. She is VERY short and only 50 lbs. She is no where close to puberty as far as I can tell. She gets what she calls ant bites, but in strange places like her hands or arms or belly when she has not been outside. Now it is cold and no ants are out and she is still getting "ant bites." When she went to her well visit, I asked for bloodwork for Celiac to be done. I believe that they did a Antitransglutimase (sp) test which came back normal. I do not know numbers. I was going to leave it at that, but I read recently that this test can have a false negative. Is this true? If so, how common is it? I am at my wits end. My dd is feeling miserable and I do not know how to help her. She is not normally one to complain. I am having her write down a food diary and elimination record. Apparently, she feel bad every day. I know about it when it is very bad and she lays on the couch all day. My dd is the kind of kid who is "good at everything." I am sure it is not stress. We homeschool and although she is bright and witty, she does not have a competetive nature. She is pale and she is defeinitely a different child from what she used to be. She has told me that her bms are green (we do not eat alot of junk food or artificial colors) and sometimes with red and white clumps. I have not seen them, but I did see a yellow unformed bm which did not seem unusual to her at all. I am hoping to catch a bm this weekend to see what she is talking about. I have mentioned most of these things to two different drs, but they just nod, write and that's it. What are your thoughts on this???
  7. I did know that Spelt any Rye were wheat realtives and are not gluten free. He will not eat those. The cookies I mentioned have barley flour so they are wheat free, but not gluten free. I did realize that. He eats them sometimes, but hardly any other processed foods so I know that is about all the gluten he would get plus in my baking with vanilla. He does eat ketchup, but I found out the one that I use is gluten free when I was looking for information on its allergen contents. I have not been able to tell if he is reacting to the cookies. He certainly is not reacting like he was to wheat. His rice milk is gluten free and I make his ice cream. He might eat some Rice Dream once in awhile and I don't know if there is gluten in that. I am not specifically avoiding gluten, just all wheat-like items except for barley. I don't bake with barley -- it's just in those cookies that I know of. Do you think he would test positive for Celiac with only that little bit of gluten? His allergy test to wheat was slightly positive, but over time, we saw problems with it. I have also noticed that he has poor absorption in his stools. I can often see food in his stools. I plan on bringing this up to the ped as well. He was always constipated before we changed his diet -- even when I was breastfeeding him. The strange rash on his bottom is gone and hardly ever returns. It "looked" something like yeast, but he would get big flat purpuly looking spots before the tiny spots errupted. Both spots were very itchy. Very strange. These did not go away until we went no wheat. He was 10lb 15oz at birth and his weight gain has been very slow. I am guessing he is close to 20lbs now at 23mos. However, all of the weight has been put on in the past 6mos. He did have two surgeries at about 6 mos and as I said before, he had urinary tract issues which can effect growth. However, he now looks like a completely different child. Happy, gaining weight, etc. I realize it all could just be allergens, but when I look at my other dc, I wonder. Thanks for all of the input. My ped listens to me so I will bring the weight issues up and see what he says. I don't mind my kids being thin, but my middle son worries me. He has no meat on his body. He has no bottom at all. He seems perfectly normal, though. They are a huge contrast to my oldest dd who is thin, but solid and gaining a preteen body. It is difficult to figure out whether they are just thin body types or something is not quite right. It is only the mother's instinct at work here. Becca
  8. Hi I am a mommy to 6 great dc. My youngest has been dx with a myriad of food allergies and we are still trying to figure him out. He is also wheat free although he appears to tolerate a little gluten. He could not tolerate Spelt at all and will not eat Rye. Recently, I have been wondering about a few of my other dc, though. Both of my other ds's are very thin. They eat quite a bit, but never put on weight. My younger son concerns me most. He was 9lbs at birth, but is only just 40lbs at 6 1/2. I also stopped bfing him and put him on 24 cal formula to no avail. My older son has always been constipated and has spots on his teeth which are not cavities or flourosis. My middle dd is short for her age and had poor enamel on her molars. Recently, I was with her in the bathroom at a resteraunt and I noticed that she had a very loose yellow stool. She also appears to possibly have an enlarged thyroid although does not appear to have any symptoms of either hyper or hypo thyroidism. I have Hashimoto's and I have never been tested for Celiac. My father and grandmother both have/had RA. My father also has Barret's Esophagus from years of undiagnosed GERD. No one ever listened to him : ( He also has diverticulitis (?) which was dx after he had blood in his stool. I also have a brother who has many strange rashes. I do as well, but his are all over his legs, itch intensely and do not go away. If they do, they always reappear soon somewhere else. He also has moth sores. He recently tested borderline hypothyroid. He has extensive food allergies and has a great difficulty with food. I have a friend with Hashi's and Celiac so I know that there is a link between Hashi's and Celiac. I am trying to figure out whether I should talk to my ped about Celiac. There could be very good explainations for all of this that is not Celiac. But I am concerned. My dc also have all had (except one) a urinary tract defect VUR. I have read that this can effect growth and the meds that they were on ould effect dental health as well. The middle boy also had two surgeries before 1yo. So that could explain it all. However, I see how wonderful my youngest ds has been doing off of wheat and it makes me wonder. Of course, he is not eating a lot of other things as well (dairy, soy, beef chicken, pork, peanuts, and eggs). Can some of you share symptoms for me. I have read lists, but I'd like to hear personal experiences. My friend with Celiac wondered if my ds might have it because he also had strange rashes on his bottom due to wheat. However, we had to eliminate it since he was reacting so violently and I did not have him tested. He eats very little processed foods so about the only gluten he gets is in some cookies he eats once in awhile. I do not want to take my other dc off of wheat at all unless they are tested. I just am trying to decide whether to talk to the ped about this. I definitely want him to do a TSH on my dd. Thanks for the help Becca