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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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  1. LOL I agree with this too based on my own observations. In the past I've had 4 colonoscopies, 4 upper endoscopies, cat scans. I've been told more times than not that they found inflammation not only in my stomach due to severe acid reflex but in my duodenum, large and small intestine, too. It is fleeting though, it comes and goes, it doesn't leave that big time damage that a Crohn's leaves. I had a cat scan once which showed inflammation in my large intestine and terminal ileum (small intestine that is very important as far as absorption) but a month later when I had my colonscopy for follow up, I didn't have inflammation. Another time I had inflammation that they biopsied and it wasn't specific enough to diagnose Crohn's or another form of colitis. My immunologist told me this is a typical pattern for IgA Deficient patients, a fleeting inflammation that comes and goes. He also told me that if I developed any conclusive diagnosis, his money's on Celiac but at the very least, he knows for a fact that I have NCGS and have had it since birth because that's how IgA Deficiency works. When I went on that strict diet back in 2011 for about 14 months not only did my diarrhea, bloating and nausea get better, but I tracked my iron, ferritin, iron saturation levels and they were normal, not even low normal, they were as normal as can be. They have gone down significantly since then. I think I already have proven that my issue with low hemoglobin/low iron is gluten sensitivity but I might as well go through the batch of tests once more just to make sure there's not a polyp or something that is causing some steady blood loss. Of course get the Celiac biopsies again, and have the hematologist take a look on Friday and do some bloodwork. If everything checks out okay as far as not a diagnosis of anything else, then it's a certainty that gluten sensitivity is 100% the culprit. Either way, it's gluten free long term for me in the very near future.
  2. Yes, I saw a hematologist three years ago because my anemia dipped lower than ever but it was only temporary. He ran every test you could imagine back then and I was told I was fine. He checked me for every type of anemia, even the rare forms. He deduced I had slight iron deficiency due to menstrual blood loss. Then I went back to him about six months ago after I had the hysterectomy and said I was still running lower hemoglobin and iron counts that I assumed would go up since I am not bleeding monthly anymore. He wasn't impressed with my numbers and basically said if they dipped lower he would consider redoing the first batch of tests. They have dipped slightly lower but probably not as low as he made it seem like would cause him to redo those tests. However, I called his office today and amazingly they got me into him this Friday afternoon so I will discuss this with him and hopefully he will redo some tests. If I get the all clear from him that my anemia is just iron deficiency then I can proceed with the GI tests and go from there. In the meantime, I suppose I should consume gluten until this is all sorted out. My primary did a baseline celiac blood test the other day that I haven't received the result yet. Like I said, I am IgA Deficient and he knows that so he ran something with IgG. I guess we will see.
  3. This definitely makes sense, thanks. I am at such a loss though because I had major surgery a year and a half ago, traditional surgery too where the surgeon opened me up, making a point of checking every organ, he was meticulous. I've had two abdominal/pelvic cat scans since too, nothing abnormal has showed up. I know even a tiny polyp could cause bleeding which might not be picked up on a cat scan, however. It's just weird because my iron and hemoglobin has really never come up since the surgery, it's not like they climbed up nicely and then suddenly went downhill. they just haven't bounced back at all. That would lead me to believe that whatever the problem is was there well before my surgery when my entire abdomen was examined by a very qualified gynecologist/oncologist too. Unless I have some other type of anemia. I even saw a hematologist about this when this all started too, he wasn't impressed and basically shrugged me off. Though I am a little lower now but still. This is so frustrating! I live 50 minutes from Mayo Clinic, Rochester, Minnesota. I am really tempted to just go there and get a full work up.
  4. Hi, thanks for the responses so far. Well, the thing is when I was tested for Celiac a couple years ago, I was eating gluten. I made sure of it. I also know that a couple years ago I went gluten free for about a year.... that was the only time in the last 10 years that my iron, iron saturation and ferritin were in very healthy ranges! I have kept copies of everything and know this to be true. Right now, though, I am ingesting gluten and have been for about six months. I do have to wonder if I remove gluten, and check my iron again and see if those numbers go up again. That would be probably more conclusive than anything else!
  5. Hi, I have Selective IgA Deficiency. Mayo Clinic clocked it at a big, fat 0. I've had endless intestinal issues my entire life. Numerous, scopes, etc. I've been told I have inflammation but it's never been conclusive enough to say Crohns or another form of colitis. It's more like a fleeting inflammation that comes and goes. My immunologist said that is more in line with IgA Deficiency, although you can develop those other diseases, too. I do carry the gene for Celiac but all blood testing and even the one biopsy years ago tested negative for Celiac. However, I know I am gluten intolerant. I feel so ill ingesting foods containing gluten, I already know this. Anyway, I've always been low on iron, ferritin, iron saturation, and my hemoglobin and hematocrit have been slightly low too. I've had undetectable numbers of vitamin D and my B12 was low a couple years ago, too. I usually just attributed the iron numbers to menstruation. However, in October 2012 I had a full hysterectomy, ovaries were taken out. I do not menstruate anymore. I thought my tests for iron would go up but guess what? They are worse! Currently, I have a super low iron saturation, at like 4%, iron is low, ferritin is low, and my recent hemoglobin is 11.6 and hematocrit is 34. I know those last two are not earth shattering but they are the lowest numbers since my surgery a year and a half ago. I am scared because I am not bleeding monthly so why are these numbers low? I might have to undergo more scopes to check for any internal bleeds and probably get tested for celiac again. But what I am wondering is if anyone has gluten intolerance (not Celiac) and stills suffers/suffered with anemia? Could this be due to gluten intolerance alone? Thanks a lot.
  6. I am wondering if this diet helps Candida issues and if not, how I can also kill the Candida while on the SCD diet? Anyone have experience with this?
  7. I also forgot to mention that I DO carry the Celiac Gene. Mayo found that. My gastro down there said immediately that I needed to try a gluten free diet. I asked her why she was recommending this since my blood tests were okay minus finding out that I carry the gene. She said they do not always go by testing, they go by a complete history, listening to the patient, taking the entire picture and viewing it. She also said the fact that I carry the gene, am IgA Deficient, have stomach dysmotility issues all points to some sort of gluten sensitivity. I credit her for being so informed although I guess you get that when you go to Mayo, or you better. LOL.
  8. Hi, thank you for the information and the link! I am not exactly sure what Mayo did for Celiac testing but they tested me while keeping in mind that I am without any IgA so I assume Mayo Clinic would know what they're doing as far as testing BUT they said I tested negative. I remember my immunologist I saw several years back told me that IgA Deficient patients are split with actually testing positive for Celiac versus Non-Celiac but Gluten Sensitivity. He said the bottom line is the same though! Most of his IgA Deficient patients have reactions to gluten and he suggests strict avoidance to feel better. He also talked about white flour products in general being bad for IgA Deficient people. I am the most shocked over my Vitamin Deficiencies. I have virtually zero Vitamin D, well I did, but supplementing has allowed a normal range level now. My B12 was like 242 (not sure of the label) and of course my one doctor said that was entirely normal even when the lab range showed it "indeterminate" but the endocrinologist said that number is way too low and suggested supplementation. I suppose this is all due to the gluten intolerance? And hey ClevelandGuy! Cleveland does rock, doesn't it? Heh. LOL. I was born on the East Side. Where abouts are you? Go Browns! Hopefully we can climb out of the hole we've been in for a couple years now!
  9. Hi. First off, I have Selective IgA Deficiency. Mayo Clinic, Rochester, clocked my IgA to a big, fat, ZERO. I didn't realize all of my intestinal issues since birth relate to this IgA Deficiency until the age of 23 when they finally diagnosed me. I have suffered with chronic diarrhea my entire life. Severe GERD, and during the past 10 years severe, unrelenting nausea and bloating. I have read up on Selective IgA Deficiency and how most, if not all, are at least gluten intolerant. I know as much based on personal experience because of how much better I feel off gluten. I also have intolerances to dairy and high carbs (white floured products) in general. Of course the blood testing and endoscopy biopsies have not showed Celiac but my immunologist says that's not unusual for IgA Deficiency patients since most of us have gluten intolerance that cannot be diagnosed with a blood test or scope/biopsy. Fairly recently I was diagnosed with both severe Vitamin D Deficiency (barely ANY Vitamin D) and a low Vitamin B12. At the time I was not strictly following the gluten free diet, a low carb diet but not totally gluten free. Here are some of my questions: 1. How many of you are Selective IgA Deficient and have either Celiac or Gluten Sensitivity? I know if you have Celiac you also have Gluten Sensitivity but one can also just be Gluten Sensitive and not with Celiac. And for those of you who share this diagnosis with me... what GI problems do you have and what food intolerances do you have? 2. Can anyone recommend a good book for me to purchase with the diet outlined for gluten sensitivity? 3. Is it common to be D and B12 Deficient with just Gluten Sensitivity? 4. I also feel I have Candida issues as well... a coated tongue, cravings for sweets, etc. Does Candida issues relate to Gluten Sensitivity as well and how can you also get rid of the Candida while staying away from Gluten? Thanks.