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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?  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


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About valerieanne

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  1. I recently posted in the DH thread... My dd10 was diagnosed with DH almost five years ago, and we've been gluten-free since (I have celiac disease). Her annual cbc results are always borderline anemic/low iron, explained as 'her normal'. A new doctor this year ordered the fecal occult, which showed moderate levels of microscopic rbcs. She suspected a dairy protein allergy, and prescribed a dairy-free diet for three weeks, to be followed by repeat and additional tests. We are one week into the GFDF diet, and ended up in emerg today. Dd had a head-toe rash. It was not DHish, but appeared to be an allergic rxn to something that was added/increased in her diet over the last week. Sigh. We are going back to our regular gluten-free diet, and I've requested a referral to an allergist. My question is: Can trace amounts of gluten cause moderate levels of microscopic rbcs to show up in a fecal? I can't find this anywhere, but it seems it would be the obvious explanation. I've moved all of my husband's gluten foods into his office, reexamined every food item in the house, cleaned and sanitized...I think it is very possible that cross-contamination was happening. AND I found one food item (tortilla chips) that did not have gluten in their ingredients or allergen alert, but could be cross-contaminated at the factory. TIA
  2. Dh And Now Milk Protein Allergy

    Thanks, ladies. I am very hesitant to do the gluten challenge. We started one on ds2 last June, but had to quit within five days due to vomiting, rash and diarhhea. The thought of another scarring episode for dd, in addition to the gi pain... No, we'll skip it. If she wants to do one when she's older, we'll revisit the idea of a gluten challenge. Restricting another thing (dairy) from her diet is just so frustrating. I guess I'm trying to abracadabra a way out of it by questioning the diagnostics. On the upside, I've requested a genetic test for dd after reading through threads. I'm learning. Yes, five years later, still learning. ETA: I meant to say that I am requesting a genetic test for DS. The paediatrician wants a diagnosis on him too, but the gluten challenge last year was too much.
  3. My daughter was diagnosed with DH by a dermatologist five years ago, based on a 'textbook presentation'. No bloodwork, no biopsy, just put on a gluten-free diet immediately. She had lesions from between her fingers, all the way up the back of her arms, to her shoulders. Watery blisters, itchy, painful during healing. Her elbows are heavily scarred from that one bad episode five years ago. Six weeks after her DH diagnosis (and being gluten-free), her paediatrician ran bloodwork, which was negative for celiac disease. She was borderline anemic, but that was 'her normal'. I tested strong positive for celiac disease. This was enough to confirm my daughter's diagnosis for the paediatrician. No scopes or gi biopsies for either of us. Yes, we both had life-long gi issues, which have mostly cleared up while gluten-free. We've moved. Her new doctor decided to do a stool test, after daughter's bloodwork came back as 'slightly anemic'. She tested positive for moderate microscopic blood in her stool. She is now on a dairy elimination diet for three weeks, due to a suspected milk protein allergy. She is questioning the DH diagnosis, as there are no bloodwork or biopsy results. She's got me wondering now, too. 1. Was the physical exam and my positive blood test enough for a reliable DH diagnosis in daughter? 2. Was my strong positive even enough for a reliable celiac disease diagnosis in me? 3. What are the experiences of DH patients who have undergone a gluten challenge? TIA
  4. My dd was diagnosed at five with textbook dermatitis herpetiformis. She is assumed to be celiac as well, but it was not necessary to continue with testing, since DH=celiac disease=Gluten Free for life. Her symptoms varied. Joint pain, anemia, lactose intolerant (now that her GI tract is healed, she can have dairy), fatigue, "eczema" (was actually DH), etc. She was in the 40% on the growth charts from birth. By age six, after one year gluten-free, she was in the 90% for height. Symptoms are so variable, it is nearly impossible to make a diagnosis on symptoms alone. I've heard of celiac disease being self-diagnosed when lupus, allergies, MS, or other auto-immune disorders were actually at play. It is good to get the biopsy, and have a definative diagnosis. Educate yourself on what can cause false-negative results. Remember, a diagnosis of celiac disease has a sunny side! It is a disease that can be managed through diet alone (no drugs! hooray!). And an early diagnosis means you can start practicing prevention earlier (hooray again!). Best wishes for quick healing!
  5. It does get easier, wmramsel. It is hard to watch your child get sick and go through recovery... all due to five cheerios. Frustrating. Mistakes happen, even to us grown-ups who have a full vocabulary, communication skills and access to google. Once you are able to train her to be gluten-free, she will amaze you. Hey, if four year olds can manage their own insulin schedule, a gluten-free diet is not impossible! We had a one year learning curve, and we made the hand sanitizer mistake too. My dd has DH, and her hands were a total mess. I found out her G1 teacher was using sanitizing gel on her 4-5 times/day. It was a nice thought, but her skin is hyper-reactive. It takes some time to close all the gaps, but you WILL get there. I hope she is feeling better soon.
  6. We are Canadian. For the tax deduction (medical diet), a formal diagnosis is required. Additionally, any issues we've had with accomodations have been resolved immediately. Once we explain DH and celiac disease as an autoimmune disorder, not a lifestyle choice, and produce a letter of diagnosis stating that we have a medical need to be gluten free for life - viola! No issues. That is the sunny side of an official diagnosis. We are atheist homeschoolers, so there are no issues involving the school system.
  7. Tarnalberry, before this gluten challenge I had a perfectly healthy little boy. I have no strong motivation to diagnose him at this point. In the future, we may need or want an official diagnosis. Until then, I am happy to wait!! Tonight, he is finally keeping food down and resting. He did get a rash, but not a DH rash. Poor little guy. Gastroenteritis is a random possibility, but might it also just be a new food reaction? My husband is gluten-free in an act of solidarity , and to eliminate the possibility of cross-contamination in the kitchen. However, he isn't above a gluten glutton event when on his own. He invariably suffers the consequences, though he has no history of celiac disease, DH, wheat allergy or intolerance. I assume his body is just not used to gluten anymore, and he suffers in the same way that people who eat beans infreqently suffer their effects. If I can find a more experienced doc, we may try one more time... but, not until he is old enough to communicate his discomforts. Our daughter suffered excruciating discomfort from the INTENSE itching DH caused her, until she could clearly articulate how it felt.
  8. To clarify, my 8 year old daughter has a DH diagnosis, I have a celiac disease diagnosis, and my two year old son has no diagnosis. We have kept him gluten free as a precaution, on drs advice. At two, they are able to do the blood tests for antibodies with relative accuracy. So, just after his second birthday, they wanted to test him. In order to test him, they recommended a one month gluten challenge prior to the blood draw. I am questioning the necessity of a diagnosis at this point, and frustrated that doctors don't approach this with more empathy in pediatric patients (why was a genetic test never offered?). This gluten challenge has made my son so SICK My daughter's doc was wonderful. Once he had the DH diagnosis, he told us to NEVER do celiac disease testing, because it is just too hard on them and basically irrelevant. DHers must be gluten free for life anyway. Stanleymonkey, you are right. I need to find a doc with experience. Thank you.
  9. Thank you! Yes, I am going to request a genetic test and wait until he is older for a gluten challenge. We had such a great doctor three years ago, I put my full trust in him and followed his recommendations to the letter. We have moved, and it is becoming clear to me that I may know more about DH and celiac disease than our current doctor. I went with her recommendation to do the gluten challenge, instead of listening to my reservations and advocating for my son This has been a hard lesson for me as a mom. I'm going to approach the doctor in a very positive way, because I know this experience is going to impact how she approaches testing for celiac disease in the future. Plus, she is very young and I think this is her first time working up a pediatric case. I'm really just angry with myself.
  10. First post here. My 8yo dd was diagnosed with DH three years ago, and I was subsequently diagnosed as celiac. We have been gluten-free for three years, including my two year old ds. He was exposed to gluten via breastmilk twice at the age of five months, on doctor's recommendation (research out of UK suggesting lowered incidence of celiac, if exposed at this age). Other than those two early exposures, this is his first time "on" gluten. We started on June 1, with one saltine cracker/day. He started having vomit burps that day. By June 3 he was vomiting several times a day. We stopped the gluten challenge yesterday, but he is still vomiting today. The doctor feels it is important to get a diagnosis as early as possible, but she doesn't have any experience with celiac in children. After he heals, I may give it one more try. It is always possible that he coincidentally came down with a bug at the same time as the challenge (though, no one else is sick). My question: is there any documented health justification for doing this at age 2? Would it not be better to wait until he is older and capable of clearly describing his discomfort to us? We are strictly gluten-free as a family anyway.