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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

Jewels50

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  1. Dr Deficiency

    I think you hit it right on the head. The only way to get production ($$$$$) out of Celiac patients is to do endoscopic surgeries. And I know the big medical conglomerate that actually owns the gastroenterology practice has production goals that the doctors and staff have to meet. Hence the reason to have a FNP on staff and meeting with patients. HMO and PPO insurance has really hurt the medical profession. But that is another topic.
  2. Dr Deficiency

    I live in the Eastern NC area and am struggling to find a good Dr, gastroenterologist here in the area. I was was told yesterday by the FNP at my gastroenterologist’s office that it is “not true” that other autoimmune diseases can be present with Celiac. When I showed here the FAQ from the U of Chicago Celiac Disease Center, she replied, “well, they could be.” When I showed her the full Celiac panel I had done and paid for myself, she wanted to know why I did that. I again mentioned that the DGP IgG is the best indicator of Gluten in the diet (mine is negative). She again told me that wasn’t true and it is the TTG that show if Gluten is in the diet. (She only ran a TTG test back in July and it was a 5 so her assistant lectured me on “cheating” on the diet. Yes, I went to the nutritionist/dietician. I know what I am doing with my diet.) Again, this is contrary to the FAQ and answers on the U of Chicago CDC’s website and Mayo Clinic about TTg. I asked her about Ttg2 and TTg 6. She snorted. She was adamant that I have no idea of what I am talking about. She told me to stop “chasing it” and that she’d move my endoscopy up to this month. (Which she did.) I told her that was great, but that I cannot go another 3 months battling the chronic fatigue, joint pain, brain fog and basically feeling like crap. She kinda listened but my 10 minutes were up and off she went. (I do have an appointment with an Endocrinologist sent up because I do have TPO antibodies in my blood work.) She works with a gastroenterologist that others with Colitis and Chron’s praise, but I don’t think he is very good with Celiac. I am definitely thinking the FNP doesn’t do any continuing ed about Celiac. Anyone know of a good Gastroenterologist in the Eastern NC area?
  3. Oooooo! I have checked out their website and they ship!! Thank you!
  4. Thank you for the link. I have had my own celiac panel done. My tTg were still slightly elevated as well as my DG Abs, IgA. My DG Abs, IgG was negative. From the research I have done, if the DGP IgG is negative, then I am NOT ingesting gluten. http://www.cureceliacdisease.org/faq/in-follow-up-blood-testing-why-would-ttg-be-negative-and-dgp-be-positive/. Am I interpreting this correctly? I had a thyroid panel done at the same time and noticed that while still in the normal range, my TSH was on the high end and my free thyroxine was on the lowest end. So I had a thyroid antibody panel done. My thyroid peroxidase (TPO) was highlighted as high. I will take these lab tests to my Dr. and go over them with her. (Hashimoto's? I have the symptoms.) In my research, I have read over and over that if a person has one autoimmune disease, it is likely that they will have others. And many on this site are living, breathing examples of it. So why is this so difficult for some of the medical profession to grasp? Also, I have many symptoms of Sjogren's Syndrome - dry eye, dry mouth, dry skin, Raynaud's, fatigue, etc. I do realize that SS is difficult to diagnose. I met with the nutritional counselor, gave her my food diary and we discussed gluten free for 2 hours. She let me know that my knowledge of nutrition and "gluten free" is very solid. She was unaware of the NIMA tester and of the Fasano diet. Thank you for all your input, links and help with this. My frustration level has gone way down while working to figure this out. Now if I could only find that really good, moist, truly gluten free donut...
  5. Nima is coming out with a sensor for those with peanut allergies this fall! Yay! My Grandson has a bad allergy to peanuts (epi pens kind) and this sensor will help to make a huge difference to my daughter's family eating out dilemma.
  6. https://www.walkinlab.com/catalogsearch/result/?order=relevance&dir=desc&q=celiac+panel&btnSearchSubmit= This one you can access directly without a doctor involvement. They send you to a draw site. Other forum members have used this or at least have linked to this site for others. I believe you have to pay cash but am not sure if they bill insurance. https://www.gdx.net/ This is where I have had all my Celiac testing and follow-up done. You need a doctor who tests with them but they have a section where they list doctors in your area, if there are any. There testing is complete and thorough. They include all the right stuff. They also have a Pay Assure system, where you pay a certain amount up front. They bill your insurance and if it is not covered, then you don't pay any more than what you already gave them. I've been doing this for years because, otherwise, I would never get any answers from the mainstream doctor crowd. Thank you for all this good information. My first test (2011) contained results for DGP IgG, which was negative and results for DGP IgA, which was highly positive (because I was eating gluten for the challenge testing). This particular test was not done in my most recent testing. I have found a lab close to where I live that does a full panel and allows walk ins. This has been my experience as well; the mainstream doctors are not very educated on Celiac disease and thus very short on answers. Many doctors use the principle of Occam's razor to diagnose.
  7. Good to know that the Nima can be overly sensitive. I would be interested in the lab information. Thank you!
  8. Recently, my lab test came back slightly elevated (5) on my tTg levels plus I have been having the symptoms of being glutened. I was diagnosed 6 years ago and for the most part, have been doing okay with the occasional set back usually due to a cross contamination issue at a restaurant and a well meaning friend or relative thinking that they could do the gluten-free thing. I found I cannot do oats at all by adding some gluten-free ones back in one day. I have gone to a whole foods type of diet while trying to figure out what I could possibly be eating that is causing my tTg level to be at 5 (along with the symptoms). I am testing foods with the Nima because it is frustrating trying to figure out where the gluten is coming from. I stopped eating peanut M&M's for quite some time but recently started snacking on them again. I am seriously baffled. If I am in doubt about whether something is gluten-free or not, I go without. What independent labs are there to do a Celiac panel?
  9. In an effort to find out what I have been eating that is causing my symptoms (migraines, joint pain, brain fog, fatigue, gut pain) I have invested in a Nima tester. Peanut M&M's DID NOT pass the gluten free test! I highly suspect cross contamination as Mars have so many M&M's that contain gluten items like pretzels and cookies. Peanut M&M's are off my safe list of something quick to grab. It also helps to shed light on why my tTg is slightly elevated as I have been eating them as of late. Since I am going with whole foods for awhile to see if that helps resolve my symptoms, peanut M&M's are off my list anyway.
  10. Little C

    Okay, great information about the tests. Good to know! After the initial gluten challenge I was positive for DGP IgA, TTG IgA, EMA IgA. I am smacking my head! I too am one of the 10% who cannot eat ANY oats. My husband uses a gluten-free bread mix to make gluten-free bread. It is possible that it has some trace amounts of oats in it as the manufacturer also makes things with gluten-free oats. (Personally, I grew up on a farm and I do not see oats becoming gluten-free being "mechanically sorted". Oats grow in wheat/barley fields and vice versa.). Thank you for this feedback and the research you have done!
  11. Little C

    Thank you all for your replies and suggestions! I did get a copy of my lab results. 3 were done in the past 6 years. Yes, 3. Oh I have had blood drawn lots but only 2 were a panel of tests for Celiac (2011 & 2012), but this last one done (2017) was just for tTg. My tTg was 5 on the most recent test. Down from 32 back in 2011. I have questions for my gastro - why wasn't a full panel of celiac testing done at the most recent blood draw? 5 years between tests - is that normal? If my tTg is at 5, how can you possibly decide that I am "cheating"? (5 is low positive for Celiac - anything under 3 is considered normal with this particular lab). Could it be cross contamination? Could it be something like the Quaker rice cakes, that say they are gluten-free, but might not be? How about the so called gluten-free salsa? I eat Boars Head meats but recently saw that their gluten levels are closer to the 20 ppm range. Am I more sensitive to gluten levels? I will ask that they run a full panel. I get a lot of push back in "your insurance company won't approve it" - so what?? I will pay for it myself! What is the name of the test that has been found to be the most accurate? Is it DGP/IgA or AGA/Ig? EMA? I did order Nima but have not received the device yet. STILL waiting for the dietician to call...
  12. I exist! I have confirmed Celiac with biopsy and positive blood work but my genetic testing says I do not have the DQ2 or DQ8 gene. So when I read the so called experts state it is impossible to have Celiac without those two gene markers, I tune out. I am not sure if I have the DQ9 gene or not. Thank you Ravenwood for pointing that out. I was born and raised on a large wheat and barley farm. I worked shoveling wheat/barley (think wheat dust), pulling rye from wheat and barley fields, and eating home ground/made wheat bread. As a child, I was sick A LOT with throwing up, diarrhea, horrible rashes, mouth ulcers, pale, thin, extremely tired, etc. But back then (in the early 60's), no one suspected Celiac disease. Later, I had extreme infertility issues including a stillborn son and many miscarriages. (Much, much heartache!) It wasn't until I was 50 at a routine colonoscopy that my GI asked if I thought I might have Celiac because I was so thin. I told him that yes, I thought I did. The blood work (after two weeks of glutening up) came back positive for DGP, TTG and EMA antibodies. The biopsy showed that my small intestine was damaged with no villi present. My genetic testing (done by a different company at my own expense) came back negative for DQ2 and DQ8, but that company remarked that all the genetics for Celiac disease have not been discovered as of yet and other genetic markers may have a hand in it. As so many others on here, I have been dismissed, patronized, lectured, shut down when I ask questions and want to see my own reports. For decades I was misdiagnosed, told it was all in my head, told to de-stress my life, Yada yada, blah blah. I do a happy dance when I see so many others on here get proactive and support others to do the same. I am glad to see you doing the same with your daughter!
  13. Little C

    Hi Tessa25, thank you for all your input and help with this! Yeah, the more I deal with this assistant, the more I am convinced she makes incorrect assumptions and generalizations. She postulated today that the dietician hasn't called me yet because "they are probably trying to figure out my insurance". Because, you know in these days of high speed internet and insurance websites to confirm benefits, it takes AT LEAST 10 business days (and counting) to do so.
  14. Little C

    Yes, back to a restricted diet. I am also doing the (tried and true for me) probiotic, magnesium, herbal /holistic approach to leaky gut regime and re, re, re researching how many ppm of gluten are in foods I eat. A food diary will help. Thanks!
  15. Little C

    Hi Gemini, great information and I will ask.