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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 tipnpat

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  1. Jersey Mike's subs has an extensive gluten-free selection. They are not a "trained" gluten-free store but most of their meats are gluten-free and chips. They use Frito-Lay chip products and both the Jersey Mike's website and the Frito-Lay website have detailed allergen info available. I get a sub in a tub when I go. You just have to ask to watch for cross-contamination. I eat there all the time and have been gluten-free for 2 years and casein free for 1. They clean the slicer for me when I order so I don't get cheese residue on my meat. Tip
  2. Celiac Panel

    I think it's all so variable no matter what. Some people are seronegative and biopsy positive and vice versa. Some still have damage after a year or two gluten free. I did read an article on the Pillcam which looks at the entire length of the small intestine rather than just the duodenum. It's a tiny camera the size of a pill that you swallow and it takes pictures and transmits them wirelessly to a receiver that your doctor then views. I'm sure it's expensive but interesting. If you do a Google search for Pillcam some articles will come up.
  3. The elevated prothrombin time could be due to an abnormal Vitamin K level. Vitamin K is a fat soluble vitamin and these are often skewed in malabsorption cases such as celiac, IBS, chron's leaky gut, etc. You need to be certain your vitamins/supplements are gluten free. Vitamin E's are frequently derived from wheat. Dairy is my drowsy culprit. I can barely keep my eyes open if I ingest casein (milk protein) now. I suppose it's the caseio-morphines in it (produces the opiate effect). I am similar to you in some ways. I am not schiz but I am bipolar - or I should say I WAS bipolar before going gluten-free. But, I used to be extremely paranoid. I always thought people didn't like me, were mad at me or were talking about me. The explanations and eye-rolling of the people around me said they thought I was narcissistic and had low self-esteem and then I was paranoid about that too! But, I liked myself just fine and thought I was a pretty cool person. I just couldn't stop obsesseing over people being mad at me for something. That's all changed now and I feel so good. I cannot tell you how good I feel! I'm not manic and I'm not depressed and I'm not paranoid. My joints don't ache, my neck doesn't hurt, I don't get migraines, my eczema stays away, my hair is growing back and I'm a good mom. Get the tests early on just because but taking gluten (and for me dairy too) out of your diet will make you feel fabulous. In fact, I don't eat any grains except occasionally rice. Good luck! Tip
  4. Celiac Panel

    I'm not sure what that meant either but there should be 5 tests in the panel. Most docs will say that only one or two are necessary but those one or two are very specific to intestinal gluten sensitivity. There is some research indicating that gluten sensitivity can be present without intestinal involvement (as most of us here know already). For this the anti-gliadins are still the best tool. These are the five tests you should have and if your doctor says they aren't necessary just say, "Humor me." Total IgA - this measures your bodies ability to make IgA as some people can't make it ttG-IgA - this is very specific to celiac disease and is an intestinal tissue antibody EMA - IgA - same as above pretty muc AGA-IgA - antigliadin IgA antibodies AGA-IgG - antigliadin IgG antibodies These two are the ones that are not SPECIFIC to celiac disease but they are SENSITIVE. Some stuff I was reading last night explained that earlier cases of celiac/gluten sensitivity can be detected with these but there are other conditions that will make them elevated as well. Oddly, those "other" conditions often improve on a gluten-free diet. Hope this helps. There are tons of info out there. Much of it is scientifically based and much of it is lay-person based but reading some of everything will help you develop your own idea of how best to take care of your body.
  5. This is strictly an observation because I'm a watcher and thinker. I have no scientific facts on which to base this or prove it. I just wondered if anyone has ever seen symptoms come and go as if the antibodies moved in to one organ, damaged it, had their fill, and then moved on to another organ? It might sound ridiculous. I've just observed it in my mother who is a Celiac and wonder if I might have even noticed it in myself. My mother found out late in life, due to my prompting, that she had celiac. It began with her autoimmune hepatitis (or this is what her doctor told her it was, obviously it wasn't fatal) and then went to her thyroid. It seemed that her LFT's normalized and then her thyroid got wacky. Now her thyroid levels are normal. Prior to all of this she has had eczema that comes and goes. And in younger years got migraines but those stopped too. She told me she used to have cystitis all the time but that went away also. All of this happened without a gluten-free diet. She was 70 when she found out and she only found out because I told her she needed to for us so she isn't interested in going gluten-free. She doesn't feel sick. But, anyway, I wondered if people have ever noticed that when one system gets better another seems to "break."
  6. What a horrible ordeal for you! At least you have a concrete answer now and they can't dismiss you anymore (that isn't to say that they won't), but their tails are between their legs, I'm sure.
  7. Believe me, I'm not a believer in studies and "the facts." I think it is all skewed and so thick in numbers and circumstances that it can't possibly be absolute. I just meant that if he published something then it would at least be more open for debate. As it is, he's just dismissed. I'm a believer. Tip
  8. I started to question all of the positive results I was seeing with Enterolab. I fully expected my two sons' tests to come back positive. But my older son who has IgG food intolerances (including wheat) testing completely absolutely negative and he is not IgA deficient. My other son's were positive. The numbers were only mildly elevated but Dr. Fine's explanation says it's like a pregnancy test and the number doesn't really matter. You either are or you aren't. I would still like for him to publish his work so it can be an accepted form of testing. Tip
  9. Anyone From North Carolina

    I'm in Asheville, NC!
  10. I'm not sure who your post was directed at. I'm not offended if it was at me because I agree with you. I don't think we're trying to join a private social club. I think we're trying to be taken seriously. So far, the only people who have taken me seriously have been people on this forum. That's just the reality and since I need people to take me seriously in order to get appropriate care for my children I have to play the game a little. I can keep them on a gluten free diet but I need for their health to be monitored appropriately and to say to the pediatrician that I want him to be checked routinely for Type I diabetes just because "of some literature I've read," is going to be one of many battles. When my own spouse is not even on my side I need some concrete ammunition. People throw out words like Munchausen-by-proxy and hypochondria and you second guess yourself. It is hard in the real world to keep kids gluten-free when their buddy sitting next to them is eating a box of Pringles or some other piece of junk. As far as the high-priced drug goes I too think it undermines a society that needs to wake up and realize what they're putting in to their bodies and demand better. Not everything will be cured by refraining from gluten, casein, and processed foods but a WHOLE lot would. When I refrain from grains and sugar I am awake, clear, and my waistline shrinks. When I eat grains my waistband gets tight. Visceral fat is the dangerous fat which is a whole other body system discussion but it all ties in to one point - our bodies are falling apart because we fill them with junk and we seek treatments rather than cures. As for me, I'm interested in a cure. I don't accept that my son has ADHD just because. I think parts of his brain don't work because of toxic overload. I want to cure him, not treat him. That was a bit of a tangent but I'm feeling passionate today I suppose from the harm I'm inflicting on myself.
  11. This sheds some clarification on how to explain to my husband why I'm still worried about our son even though his ttG was normal. He has almost no Vitamin D despite supplementation and it was actually lower this summer after sun exposure than it was this winter prior to supplementation. My husband thinks I'm looking for a sickness that isn't there and I keep trying to explain to him that I'm trying to PREVENT a sickness from being there. I just don't think that one ttG gives us a whole picture. Thank you for this information.
  12. Hi, I was the one with the "RA" question. When you said RA gene I was thinking along the lines of DQ and I thought RA was another gene locus or something like that. Now that rheumatory arthritis is spelled out I'm thinking - duh! This was a very interesting and fascinating post. It was timely as I had just gotten my glutenfreeindy newsletter by e-mail and there was some research excerpt that mentioned the role of cytokines. I've been looking for the source of the article. If I find it I'll post it here. The study was seeking out different responses of the body to non-celiac gluten sensitivity and celiac disease. There were some variations in cytokine expression and intestinal permeability that defined the two different disorders but recognized that they are both ultimately immune-mediated. That seems to just say to me that it's just part of the many paths that lead to the main road.
  13. They are indeed interesting. I did genetic testing with Enterolab on myself and then Kimball genetics on my two boys. What I liked about Enterolab was that they tell you each allele no matter what it is. Kimball only tells you whether or not DQ2 and/or DQ8 was detected. I was second guessing Enterolab's credibility and so that was why I went with Kimball for my children but I actually like Enterolab's interpretation better because they tell you what you have, not just what you don't have. For instance: Kimball's report said my one son had DQ2 and DQ 8 detected. The other son's report said DQ 2 detected. DQ 8 not detected. With Enterolab I knew that my alleles were DQ2 (2.5) and DQ4 (which is not associated with celiac but is associated with Type I diabetes). I couldn't help myself. I was curious. So, I did an Enterolab swab on my DQ2 son because I wanted to know what his other allele was. He is DQ 2 & 6. That means my husband must be 2 & 8. So... yes, it's informative but we're no closer to knowing if my children have celiac. We only know they have a gene and that an elimination diet worked well for them. Also, Enterolab is less expensive and they use PCR analysis like Kimball and Prometheus. The other labs give the alpha chain along with the beta chain but Enterolab says this isn't necessary.
  14. Has anyone out there ever tried the Biocard home testing kits? They test for ttG. They are not available in the US but of course, the UK, Canada, and Australia have them.
  15. I feel the same way. It just seems so important to me but everyone in my family, including my husband look at me with tried patience. In the beginning I said to myself that being on a gluten-free diet was a lifestyle choice for me and a diagnosis would not change anything. But, it DOES change whether or not anyone believes you or thinks you've just gone off your rocker. I can totally see your point. Tip