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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 BELMO33

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  1. What was your score on that DGP IgA Test? I scored a 20 on by DGP IgA with nothing else positive, 6 months later I decided to do the blood test again with a different GI and it was a 16, all other ttGs and the IgG were similar or lower than the first test, the DGP IgG which was 12 the first time was 6. The 2nd GI I saw was more specialized in celiac and said that DGP IgAs are strongly correlated because most of the time people test off the charts on them, usually over 30 which is the strong positive threshold, you're not going to get that kind of score with anything but celiac. He said though that people who do test down closer to the threshold of 20 WITHOUT any other positive celiac test often times do not have celiac. What DO they have is the question, most are often left with IBS diagnosis, so could a percentage of IBS patients have positive DGP IgAs? Given we know there are many non-celiac IBS patients with gluten sensitivity I guess its possible. I also exhibited some improvement in gastro symptoms when I went gluten free for 10 days or so back in March and also had nothing else off on regular blood tests such as potassium, iron or calcium levels.
  2. Celiac Vaccine? Not For Me

    I anticipate initially this vaccine is going to create problems because people are going to think its the equivalent of lactose intolerants take that completely allows the body to break down lactose and will go completely off their gluten-free diets. From what I'm reading or understand this is just a 1st step in that it basically prevents cross contamination concerns or maybe if you ate one breadstick or a few croutons you would not have any SI reaction. I'm of the opinion a "complete cure" or medication that allows gluten to be completely broken down is easily feasible and probably has been for quite some time but since celiac has only recently come to the forefront no efforts were being put forth to get there. I think if this is ultimately successful that will follow quickly behind. I most likely have celiac although its hard to say because my GI symptoms can vanish for weeks at a time and I had one marginally positive blood test but I more or less decided 3-4 months back when I got the blood test result I was not going to even bother going gluten-free until some sort of cross contaminant preventer became available. My only positive test was a 19 on the IgA, I figure in 3-4 years (the most likely time before this thing is out there) I could not do that much additional damage given the ttA and EMA were raging negative.
  3. I've tried to find what % of knowing celiacs follow the diet. The only stat I could find was one site that stated anywhetre from 50-70%, not sure if anyone else here as seen numbers on that. When I first got the diagnosis I certainly said some dumb stuff and said I'd rather have a few other conditions than this. I know people with Crohn's and UC and its a wide range of impact on life, some are suffering way worse than any celiac and others much less, they may be at a much greater risk of other conditions developing which they have zero control over unlike someone with celiac who controls their own destiny to a big extent but their quality of life with a mild case of Crohn's or UC may be impacted less. I think the biggest fix can be if they can manage to get a drug out there allowing for a reasonable degree of CC, if we can at least get something where the pizza guy can make your pie on the same surface he just made the regular pie on it would probably be the best day of some people's lives on this forum. I know I'd take modest side effects if it meant I could order off any gluten-free menu and not worry what utensils may have touched the food. If I get a biopsy confirmation this is indeed celiac I know there are going to be plenty of days down the road it takes every ounce of will I have left in me not to cheat, particularly when I'm traveling which I unfortunately do alot.
  4. I am awaiting biopsy in 7 weeks but I have read some discouraging stuff the last few weeks since my blood results researching the condition. I've seen anything from numerous people claiming the gluten-free diet actually made them diabetic to only 50% of people are healed after 5-10 years since cross contamination simply occurs way too often to get back to 100% capacity unless you literally lock yourself in your house for all your meals. My only blood test which was positive was the IgA which was 20, the EMA and TtG were raging negative. I have tried gluten free eating here the last 3-4 days, I plan on doing it for another 3-4 before going back on gluten before the biopsy. Amazingly my gas and bloating are almost gone completely, still some discomfort but about 90% better overall. However, I've developed horrible cold hands and feet, not sure if this a withdrawal symptom or my body revolting to getting less or different food than it is used to. My weight has also dropped off 3 pounds in 4 days, largely because I have not been eating my snacking donuts 3 times a day which are 280 calories a piece, remarkable what a difference losing 840 calories a day can do.
  5. I'm awaiting biopsy but am testing gluten free foods. I tried Vans frozen waffles and blehhh did not like, bought some nature's path waffles and those were much better to me, alot closer to eggos. Any other brands out there? I did not see any others in Whole Foods or Trader Joe's. I also cannot find gluten free pancakes at either store at all though I do know they exist as I have seen the Van's ones advertised online though both stores only have the gluten ones. I asked the girl next to me who was grabbing some of the Van's gluten free waffles and she said generally if you find the pancakes take a photo because you don't see them too often. As far as bread goes I saw Whole Foods keeps em all frozen yet Trader Joe's does not for some reason? I'm assuming its probably not a good idea to buy the non frozen bread as far as it lasting long?
  6. To answer the endoscopy quesiton, it can often be "negative" in people with positive blood results because a large majority of gastroentorologists do NOT take enough samples, there have been studies showing most are surprisingly unaware how many samples they really need to be taking. In someone who may have only had celiac for 2 or 3 years its entirely possible a biopsy with only 3 or 4 samples all from a narrow region of the small bowel may come back negaitve. Remember, sometimes celiac panel bloodwork can be negative for a few years after the disease technicallly onsets, its as likely or even more likely large sections of the small bowel can remain normal that long as well. Based on what your doc said that everything was normal but it clearly shows celiac its entirely possible that if she ran the recommended celiac panel everything was on the "high end" of normal. In general most healthy people test strongly negative on all celiac panel tests, that means IgA and IgG numbers well into the single numbers, sometimes even between 1 and 3 (20 or higher is positive at most labs) and TtG numbers around 0 or 1, alot of gastro doctors become concerned when they start seeing numbers creep over 10 on either Iga/IgG test that you're at least dealing with a gluten sensitivity.
  7. Night Sweats?

    I've always had "streaky" night sweats where I can go months at a time sometimes even a year or two with no problem and then I repeteadly wake up sweating most nights in a span of a week or two, never could really connect it to anything but remarkably when its happening it can do so even with brief sleep periods, I've gone to bed at 2am and woke up sweating at 3 or sometimes can even take a brief nap during the day and have it occur.
  8. I expressed my desires about the blood test and was sort of rebuffed. Doc claims that the borderline IgA and negative EMA in no way is a guarantee the disease is recent at all, said someone with the disease for 18 years can have a 21 IgA and negative EMA while someone only having it for 18 months can have a 40 IgA and 600 EMA...no guarantee that the #s suggest duration. I countered with the normal calcium/vitamin/iron levels on the generic blood workup and he said THAT could hold some water about this being recent but still said there are plenty of patients with the illness for decades who do not suffer the iron or vitamin deficiencies.
  9. No, didn't have the follow up yet so no specific one on one conversation. I've come across some research that shows surprisingly these are not exactly the breakdowns you want to see as a potential celiac. Although most argue a non positive EMA that falls decently within normal range means less intestinal damage and the likelihood you've caught the condition much earlier on, some think the lesser fight put up within the intestines and hence lower EMA # increases the risk of malignancies to develop. I was told by a family member who is a general practitione to wait 90-120 days and do the blood test again and see if the #s increase any, she has advised me not to go through the invasive endoscopy procedure just yet based on those #s and my otherwise normal supplementary blood work.
  10. Just got the results of my tests. This reeks of very recent development of celiac disease to me. Any ideas? With the marginally positive IgA and somewhat high negative IgG, also note the borderline negative transglutiminas IgA at 3. Of other note all bloodwork at my general physician in Decmember was normal including RBC, hemoglobin, iron, calcium, and thyroid. I have had IBS symptoms on and off for 15 years or more, have not really noticed any glaring symptoms change in recent times. I did have a period in December of 5-7 days of pretty nasty gas and bloating but no diarrhea. In the last 3-4 days the same pattern resurfaced and now appears to once again be improving. Is this cyclical symptom pattern somewhat common in celiac? I was eating some pretty horriblly glutened foods for Xmas and the entire last 6 weeks since the first flareup and no symptoms whatsoever til the same thing came back last week. Deamidated Gladin IgA - 20 Weak positive 20-30 Demidated Gladin IgG - 15 Negative 0-19 Transglutiminase IgA - 3 Negative 0-3 Transglutiminase IgG - <2 Negative 0-5 Endomysial Antibody IgA - 174 Normal range 91-414 C-Reactive Protein - 0.7 Normal range 0.0-4.9