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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 FREE Celiac.com 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.


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About pocahontas30

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  1. My kids had some of the same results on their bloodwork. The pediatrician said they meant my daughter was negative for celiac, but the gastroenterologist looked at the results and said "we need to do more tests" because her results of IgA were too low to quantify anything. He said that some people who have celiac don't produce enough IgA to even test anymore. Hope that helps.
  2. My kids are newly diagnosed celiac. I took them out of town for a weekend trip for the first time since diagnosis and had a hard time finding places to eat. After researching, we went to a steakhouse with a separate gluten-free menu. A long wait later, and the waiter comes to take our order: Me: My boys will have the steak and salad. Please use clean bowl to mix the salad and no croutons. W: Is this gluten free? Me: yes please. W: how gluten free does it need to be? Me: (in my head: "Seriously? If it's not totally gluten-free then it's not gluten-free genious!") Do your best! Sigh
  3. I understand you wanting to have an official diagnosis. My family is dealing with this as well. I am certain that my husband and my oldest child have celiac (my 3 youngest were just diagnosed with celiac), but their blood tests were negative. It makes it harder to stick to the diet for them, and it makes it seem like it's more "optional" for themselves and others (restaurant, doctors, etc) to acknowledge a real need for gluten free without an official diagnosis. It's so frustrating that there are so many factors involved in getting that diagnosis, but the most important thing is that you start to feel better. You don't need a dr. to tell you if your diet is helping.
  4. I just thought I'd let you know about my son's diagnosis. He was tested b/c his brother has celiac. His bloodwork came back questionable (Iga too low) so they tested IGg. It came back negative so the dr. said he doesn't have celiac. But after letting the dr. know that he still has symptoms (throws up a lot, migraines, complains of tummy aches), he decided to do a biopsy. I wasn't surprised that he was positive for celiac, but the dr. office sure was! The nurse who called to give me the results couldn't believe he was positive and told me she was shocked. Fortunately I have been reading a lot on this site and learned that it is normal for celiacs to get false negatives with blood tests. If I were you, I'd find a new dr. I took my kids to a gastroenterologist, and he was more than willing to go the extra mile to find out what was causing my kids issues.
  5. My son was just diagnosed celiac after testing negative with 2 separate blood tests but showing villi damage to the intestines. From what I've read here, that's pretty common suggesting you probably do have celiac.
  6. Thanks for the replies and the support!
  7. With my kids being newly diagnosed with celiac, I am wondering how I can know if they are being contaminated with gluten. As far as I know, they don't have a lot of symptoms. They do tend to complain of belly aches more than a non celiac kid, and they do end up throwing up if they have had too much junk (before going gluten free), but other than that, no one would even guess they had this disease. We've only been gluten-free for about a month, and I've not noticed any change in their health. Is it likely that they are not extremely sensitive? I know that even though they may have no outward symptoms, there could still be damaging internal effects if they have gluten. I guess I'm just wondering how I can know that we are doing a good enough job being gluten-free?
  8. In the last 2 months, 3 of my 5 children have been diagnosed with celiac and the 4th is likely NCGI. We are doing ok with the change in diet so far, but I just got a call that my 11 yr old son has iron deficiency. He was put on iron and vitamin C to help absorb this. The thing is that it was his pulmonologist that prescribed it. I told them that my son was just diagnosed with celiac and asked if that could be a cause for the deficiency. The nurse had no idea, and so I was wondering if any of you could tell me if it's likely that he is low on iron because of celiac? My son has been dealing with somewhat severe asthma for the past year, and has recently gone through a myriad of tests to find out what may be triggering it, and if he is low on antibodies etc. I'm also wondering if there are any probiotics (gummies?) that are safe for celiac kids to take, and would this help them to absorb more nutrients? One frustration I'm having is that I got the call that my kids are celiac and was told the dr. would see me in 6 months. I had to ask for a referral to a nutritionist, and wait 2 months to see them. I feel like any info I get on this disease is from the internet. Any advice or help is appreciated!
  9. I'm new to this forum and to celiac. I have 5 children. Last month I had my youngest son (4) tested for celiac through blood tests (positive) and endoscopy (positive). This week I had confirmation that one of my other kids (who's 10) tested positive through same testing. I am working on re-testing my third child (8) because his blood tests showed abnormally low numbers for celiac. According to his gastroenterologist, this could also be a sign of celiac. I'm slowly wrapping my head around being a gluten-free family and we have eliminated gluten from our home (except for the one being re-tested). My real concern is for my oldest daughter. She is almost 19 and has been suffering from health problems for over 2 years now. She has had joint problems from the time she hit puberty. She has had 3 knee surgeries to recreate ligaments that were stretched too far to hold her knees in place. She then started complaining that she didn't feel good all the time. Then she started throwing up frequently and having diarrhea/constipation often. I took her to the dr. and he basically said it was all in her head. After she lost nearly 30 lbs and missed weeks of school due to illness, I took her to a new dr. who did lots of tests and found that she had a severe case of mono. Months later, she still wasn't any better. She could hardly eat anything and was constantly miserable. We found that her gall bladder wasn't functioning and she had it removed. She has always had exzema but after the gall bladder was removed it got severe. She was often sent home from school because the nurse thought it looked contageous. She went off to college and still struggled. She would randomly pass out and has still been vomiting frequently (she doesn't have an eating disorder). She complains of a sharp pain in her side every time she eats. She has since moved back home in attempts to get healthy again. I was anxious to have her tested for celiac when we found that my sons have it. She has tried gluten elimination and said that she feels much better and her skin has started to heal from it. She was tested for celiac and results came back negative. Her dr. just says she doesn't have it. I'm fine with her just going gluten free for life. I'm confident she will start to heal and feel much better, but with all of the issues she's had, it would help her so much to have an official diagnosis. She was so upset when the results came back negative because she wants so much to know for sure that if she does make this change it will be a permanent help to her. Are there any recommendations from any of you who may have gone through similiar symptoms and testing?