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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 is Celiac Disease and the Gluten-Free Diet? 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

HannahBick

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About HannahBick

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  1. I've been told that a lot of PCPs have this attitude about celiac. Ours hasn't even evaluated my husband's diet. We don't live near a university medical center so that doesn't help. At the moment I am using up the non-gluten-free items while I wait for all the kids to get scoped and treating them to Dunkin Donuts, Oreo cookies and Pizza. They are aware that their lifestyle will soon change (yes there have been tears, my daughters are very worried about their upcoming biopsies this week) so I've told them to enjoy the unrestricted diet while it lasts. They will now experience first-hand what it is like to not be able to eat the foods at social events and spontaneously go to other kids' homes for sleepovers. I have spent years trying to stick up for my husband and make him look good to other people. He will arrive home late next week, so hopefully all of the results from their EGD and biopsy will be in by then and I can show him proof from the GI specialist. I've decided that if the kids complain about the gluten-free diet being difficult, I'll remind them of how their father has had to follow the diet from an even younger age, and also point out the risks of having untreated celiac. Maybe that Oreo cookie won't look so appetising after all...
  2. I have taken my children to a different doctor, who was recommended by a celiac friend of mine. 7 out of the 10 children have tested positive, and all of them are scheduled for an EGD at different times (since they all have signs/symptoms). I'm not surprised since they (and I) have all eaten a lot of unhealthy high-gluten food for so long, far more than most people, given that wonder bread is so inexpensive. My husband has been away for the last two weeks so he doesn't know what I've done. At least if they have a positive biopsy he and our PCP can't argue anymore!
  3. Should we even refer to the HLA-DQ2 and HLA-DQ8 genes as 'celiac genes'? A lot of people seem to think that everyone who is HLA-DQ2/8 positive is potentially a case of celiac disease waiting to be triggered but I just don't think that's the case. Surely there must be other genes involved as well. I heard there are 30+ additional genes.
  4. Do realise that she may have developed celiac disease anyway, even had she not encountered the 'food poisoning' incident. I heard from an MD friend of mine that a recent study showed that infections did not seem to influence celiac risk.
  5. My husband (who is celiac) doesn't want our children tested even though some are showing symptoms. 4-6 months is a very short time interval to develop full blown Type l diabetes from the initial onset of autoimmunity. I would have thought 4-6 years would have been a more likely timeframe. Was your daughter completely gluten free before December last year?
  6. I would be very surprised if someone with celiac disease could eat gluten after a series of these shots.
  7. I think the prevalence much higher too. It seems like a lot of our friends are celiac and at least a few families we know have more than one affected member. My husband is celiac (diagnosed several decades ago) and I am pretty sure some of our kids are as well, even though the spouse doesn't want to admit it or have them screened because of our tight budget and the cost of gluten free food. But if celiacs seem to be everywhere, why do celiac organizations say that 1% are affected and 80% of them are undiagnosed?
  8. I think there are going to be some tears, at least for a few of them. Most of them adore bread even though I don't believe it necessarily adores them back. One of the children had a bowel movement earlier today, forgot to flush the loo and it absolutely stank. I think my husband has wanted to live his life through his children since he missed out on being able to eat normal breads, cakes and biscuits. Gluten hasn't even come close to destroying our childrens' health like it destroyed his own when he was very young. He always considers the children to be his friends. I am a bit shocked to be honest as I believed him when he told me that celiac is normally inherited from the mother (caused by c-section, quality of breastmilk as well as genes, etc.) and not the father and that because he was gluten free at the time of conception he thought they were even less likely to have problems. I just don't want any doctors short changing or (intentionally/unintentionally) fooling me in the process. I need to know what I am getting into and be very sure of myself.
  9. What parent, in their right mind, would do that?
  10. Thanks for your replies. One question though. Should I let them put my kids through an endoscopy? I'm happy for them to run the blood and gene tests but am very uneasy about the risks of them going through the biopsy procedure. It seems too invasive and traumatic just to get a diagnosis. Can't they just go gluten free from positive bloodwork? I know other parents who have done this because the antibody tests apparently have a very high positive predictive value. How does this work?
  11. That seems a bit harsh. I would think that an occasional "gluten free" pizza from the pizza parlor would be fine, especially if she is with her friends and it only happens once in a while. Tests were conducted on Domino's pizzas several years ago. They tested below 20ppm.
  12. I'm getting the kids tested. I'll pay for it if I need to. I just feel like we're being socially irresponsible by not getting them screened. It's not fair on other school students who are following a gluten free diet and have few options in the cafeterias due to so few celiacs knowing they have the condition. The more I learn, it seems like the undiagnosed celiacs are the ones who are really hurting the rest of society. Couldn't believe it when I heard that more than 80% are undiagnosed. My husband (who is going to hit the roof when he finds out) recently told a friend of ours that better diagnosis is the reason more celiac disease exists. Correct me if I'm wrong but it seems like a lot more kids are sick than they used to be.
  13. PCP has never questioned my husband on gluten exposure. He is very careful about cross contamination, has a separate toaster, cooking utensils and butter/jam pots but we do live in a gluten-full house for myself and the kids who bake regular scones, cakes and (occasionally) raisin bread. I would have thought his exposures would be minimal, since we clean up very carefully after ourselves. Thought I should add that he went in for an EGD late last year and his biopsies and bloods came back normal so the GI said he was managing his celiac condition extremely well. The antibiotic tablets do seem to have helped him a bit, he has less abdominal pain, fibromyalgia and joint pain than before. Is it really possible that gluten could be causing these symptoms despite normal blood and biopsy results? He was told by the GI specialist that everything he is doing is fine.
  14. I'm reluctant to change doctors since my husband last year was diagnosed with suspected Lyme disease by our PCP. No other doctors in our area think that Lyme disease is legitimate. He had been complaining of fibromyalgia, joint pain and unexplained recurrent stomach cramps for the past five years and is currently being treated with antibiotics and doing better but still having issues, so I don't want to get off side with our family doctor on this one. Is there a way to test the kids for celiac without a doctor? I might consider this route.