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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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  1. Ana Tests

    Hi jenvan, I am officially diagnosed with "probable" Sjogren's--only because I haven't had a salivary gland biopsy (no thanks!) or another objective test like the Schirmer's. Since I have symptoms of dry eyes and mouth and the anti-Ro/SSA antibody, I get a probable diagnosis even without the tests. That's enough for me. I know I have it. OTOH, I don't have celiac disease, which is why you haven't seen me on this board for a while. I had the antibody tests, and all were negative. I'm still anemic and no one knows why--colonoscopy and upper endoscopy were normal, so bleeding from the GI tract isn't the cause. On the subject of Sjogren's again, I am also ANA negative--or was five years ago. I haven't been tested since. ANA can change. I could have it done tomorrow and test positive. Although it's not common, you can have Sjogren's without a positive ANA.
  2. Wow, that's impressive, giraffelover. I've had very normal blood pressure readings until recently. Now they run borderline high: 130-140/80-90. It's weird, but as the anemia worsens so does the blood pressure. I've never heard of any connection between the two, but who knows. Fluid retention could certainly cause hypertension as well as weight gain, both of which I have.
  3. Ana Tests

    Well, the dopey doctor was right about one thing: ANA can be positive in perfectly healthy people. Of course, many of them are elderly people. But if you have an elevated ANA titre and symptoms suggestive of autoimmune disease, you should be followed up. As far as I know, elevated ANA is not directly linked to celiac disease. However, many autoimmune diseases that are associated with celiac disease--lupus, Sjogren's among them--usually produce high ANA levels. I'm one of those weirdos who has a Sjogren Syndrome antibody (anti-Ro/SSA) with a negative ANA. Go figure. It happens, especially with anti-Ro. Had my blood drawn last week for all the celiac disease-related autoantibodies plus Ig levels. So I'm in waiting mode right now. Don't know whether I want the results to be positive or not. It would certainly answer a lot of long-standing questions. Then again, I can't imagine myself on any kind of a strict diet.
  4. Red bumps with scaly patches could be eczema. Normally, eczema is thought to be an allergic reaction, mediated by the antibody subtype, IgE. You can also have autoeczema--an autoimmune process indistinguishable from atopic (allergic) eczema except it's not classic allergy (not IgE mediated). Autoeczema is not uncommon in people with other autoimmune diseases, such as celiac disease. I have undetectable IgE (IgE deficiency) and I've had bouts of eczema. Easy to tell which one that is. Back to your bumps. Do they disappear then quickly reappear if you press on them? Are they raised or flat? Are they as small as pinpoints or slightly larger? It's hard--impossible--to tell what they are without seeing them--or, rather, without an expert seeing them. You may need a trip to your internist or dermatologist.
  5. Sam, Have you been retested for heliobacter? The upper GI problems (reflux, stomach pain), the B12 deficiency and anemia could all be related to H. pylori gastritis. I'm thinking this could be my problem too. I'm undiagnosed but have many of the same symptoms you do. Many years ago, I was found to be infected with H. pylori, and the doctor chose not to treat it--they didn't back then. The treatment is very aggressive--only tough bugs can grow in stomach acid, after all--multiple antibiotics. If you didn't receive this treatment, you may want to. And if you did, you may want to make sure it worked. Good luck.
  6. Do you get exhausted after eating a meal? I ate lunch about an hour ago and am just about ready to pass out. I mean, I'd kill for a bed! This is nothing new for me. I just never had an explanation for it before now. For those of you on a gluten-free diet, you may have to remember prior to the dietary change. Zzzzzz!
  7. I Give Up

    [>>I agree with Claire -- I don't go back to doctors who laugh at me. There is a rheumatologist who is, probably within the next two days, receiving all of the "factual" (vs imagined) information from bloodwork and biopsies which proves that he was wrong last year.<< I've had a terrible time with rheumatologists. They don't listen, they don't care. I guess there are some good ones out there. I just haven't encountered them. Good on you for not putting up with crap from doctors. Any doctor who laughs at you is not worth your while--or your money. You're the customer, and the customer has the right to decide with whom s/he does business.
  8. Cerebellar ataxia--egads! I hadn't heard about the connection between that and celiac disease. Called today to schedule an appointment with my gastroenterologist. Unfortunately, the earliest appointment I can get is next month. In a way, that's fine. It gives me time to wallow in my denial--I need that luxury. Heaven forbid I should do anything quickly or on the spur of the moment. Not one spontaneous neuron in this brain! The diet freaks me out, to be quite honest. When I say I live to eat, I actually wake up in the morning anticipating the gluten-laden treat I have for breakfast every day. What will I do without little chocolate doughnuts?! Ack! Ok, stop laughing. LOL, I'll survive. The anemia is becoming more than just a nuisance. Lately, I've been feeling very tired, almost spaced out. Last Saturday I came to work after a full night's sleep and almost took a snooze at my desk. Some people have mentioned that the anemia of celiac disease can get worse as one gets older. Is that true? It seems to be that way for me. Thanks again to one and all for the great responses.
  9. Hmm, I don't know about costochondritis and Celiac Disease specifically, but I know costochondritis is common in other autoimmune diseases such as lupus. Sharp pains in the lower ribcage can be bowel pain--gas or otherwise. I get left sided pain in this area and have for years. It's definitely my evil gut at work because it's accompanied by other intestinal symptoms--I'll spare you the gory details. :-)
  10. >>At the end of the appt. I asked about celiac, and he said yeah, it is rare and that it usually happens in people that have been to 3rd world countries????<< This is tropical sprue, not celiac sprue (aka celiac disease). Your doctor is not well informed--and I'm being uncharacteristically nice and PC by putting it this way.
  11. I Give Up

    Danijela, Definitely get a detailed list of antibody tests run on you. Let me tell you why. There's a condition closely associated with celiac disease which will almost guarantee that you will test negative. This is because most of the autoantibody tests for celiac disease are of the IgA isotype. A small percentage of celiac disease'ers have IgA deficiency. Guess what that means? False negatives galore. What's with the Spanish heritage thing? That's bulldunk. celiac disease is more common among those of northern/eastern European heritage. And the "all in your head nonsense": something like anemia, which you have, cannot possibly be in your head. "All in your head" muttered by a doctor means "I have no clue what's wrong with you." Since medical schools train their students to never use the dreaded, "I don't know", they're forced to adopt the more pleasant and accomodating "it's all in your head, fruitcake." Nice, huh?
  12. Wow, thanks for the quick replies. The only reason I would go on a gluten free diet would be to reduce the risk of intestinal lymphoma. The anemia and fatigue are nuisances I can tolerate. But intestinal lymphoma--that one really scares me. LOL, yes, Jersey, Evil Gut is good way to describe mine, although the IBS symptoms have improved considerably over the past 10-15 years. From age 12-early 30's, it was hell--pain for two weeks straight with lots of fluid in the gut (it actually gurgled when I pushed on it.) Nobody seemed to know why it was so bad. Back then, celiac disease always started in childhood, or so the medical geniuses thought. If anything, I was constipated as a baby, and not anemic. Hence, celiac disease was never considered as a diagnosis. So, y'all think I better get those blood tests, huh? Did you all have the jejunal biopsy?
  13. ...that I have celiac disease? Not your classic childhood onset celiac disease, but celiac disease nonetheless. Here's the rundown on me: Sex: Female Symptoms: history of severe irritable bowel syndrome since age 12; fatigue and listlessness. Abnormal blood tests: anemia (unexplained and chronic); lymphopenia (low lymphocyte count--no history of HIV); autoantibody to Sjogren's syndrome. Immunoglobulin deficiency (IgE and possibly IgA). Low blood calcium levels. Associated Diseases: Autoimmune thyroid disease; mild Sjogren's Syndrome. I have yet to get the blood tests. Then again, if I have IgA deficiency, most of the autoantibody tests for celiac disease will be negative. IgG anti-gliadin might be positive but that's not as sensitive or specific. Questions for adults with the disease: 1) On the gluten free diet, did you gain weight? Weight loss is definitely not a symptom of mine. In fact, I have the opposite problem. 2) How hellish is the gluten free diet? Consistent with 1), I live to eat. Thanks in advance.