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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. Immunoglobulin A is not a celiac test. It is a control test to see if you are low in IgA because low IgA is much more common among celiacs (1/20) than it is in the regular population (1 in 100's).   Low IgA means your IgA based celiac tests (ttG IgA, DGP IgA, EMA IgA) will be negative even if you are a celiac.  Unfortunately, the DGP IgG and ttG IgG (especially) are not overly sensitive celiac tests. There is a small chance that you have celiac disease in spite of those negatives. If you suspect celiac disease, and you can handle not going gluten-free yet, you may want to push for the endoscopic biopsy.  Make sure they take at least 6 samples. If all else fails you could try the gluten-free diet for 6 months or so and see how you do on it (after all testing is complete).  Good luck!
  2. I agree that you have celiac disease. Without a doubt.  IMO, you could take or leave the biopsy. Biopsies do have a false negative rate that can be as high as 20%. Make sure you have at LEAST 6 samples taken if you get it done. If it does end up negative some doctors will say you don't have celiac disease. It could happen (but it is unlikely). Do remember that a negative test does not discount the positive tests, just like the negative tTG IgG did not discount the other tests. A negative test at this point just does not support a celiac disease diagnosis. That's all. It still looks like you have it... Four out of five tests positive is quite unusual. One or two positives is much more the norm. Let us know what you do.  :)
  3. Good luck with your son.  I hope he is in perfect health. Let us know how it all goes too.  :)
  4. Like notme! said, a gluten challenge is less than 4 slices of bread. The most common recommendations I've seen is the equivalent of 1-2 slices of bread per day, with some saying as low as a half slice.  The gluten challenge is usually 8-12 weeks for the blood test and 2-4 weeks for the biopsy. You could have celiac disease or non-celiac gluten sensitivity (NCGS) or other intestinal/gut problems.  Seeing a gastro doctor about it would be a good idea.  Try keeping a food and symptom journal so you have some hard data to show him. If you skip getting tested you will need to be as strict as a celiac, just in case you have it. No risking cross contamination at home of eating out.  Check every label and skip eating if it could be dangerous.  Your whole foods diet will help you stay safe, just make sure you are getting enough proteins and fats too. Welcome to the boards. I hope you are feeling better soon.
  5. Welcome to the board. I'm afraid that your daughter's tests look quite positive for celiac disease. The tTG IgA is the tissue transglutaminase immunoglobulin A test. It's the most common cs test.  The normal range is 0-19, and it appears her result was 3710.  Very high! The ENDOMYSIAL AB (antibodies) is the EMA IgA test. It tends to detect more advanced damage. It is rare to have a positive EMA IgA without already having a pretty high tTG IgA (they are very similar tests).  The EMA IgA is done as a titre. The sample keeps being diluted until the EMA IgA is no longer detected. 1:10 is normal in your lab, sometimes 1:20 is normal. 1:40 or 1:80 is the start of positive, 1:160 is not unusual. A few people get a 1:320.  I'm afraid a 1:640 is very very high and I only see that a few times per year. The EMA IgA is highly specific to celiac disease. Your chances of having a positive test and not having celiac disease is less than 2%. The ttG IgA is a very good test too with a false positive rate of about 5%. I'm afraid there is little doubt, even without doing an endoscopic biopsy, that she has celiac disease.  I was positive in those two tests too, although not as high as your daughter, and we skipped the biopsy because we were so sure that it was celiac disease. IgA is just a control test to measure immunoglobulin A - a control test.  About 5% of celiacs are deficient in IgA which would cause false negative test results in the actual celiac tests (tTG IgA and EMA IgA). She is within normal range and her celiac disease test results were accurate. This report by the World Gastroenterology Organisation has more information on the tests: When you see the doctor he'll probably want to do an endoscopic biopsy on her to confirm the diagnosis. If so, she'll need to eat gluten in the 2-4 weeks prior to the test so you may not want to start the gluten-free diet yet. If you choose to have it done, make sure at LEAST 6 samples are taken as damage can be patchy. You may want to have her nutrients checked too.  Celiacs are often low in B12, A, D, Mg, Ca, K, Fe ferritin, Zn, and Cu. Celiacs are more likely to develop type 1 diabetes and hashimoto's so you'll want to keep an eye out for that in future years. And my final bad new, the rest of the family will need to be tested for celiac disease, and retested every 2 years if they continue to eat any gluten.  First deghree family members have somewhere between a 1 in 10 to 1 in 22 chance of developing celiac disease. Hang in there mom. It's great that you caught this at such a young age.  You've saved her many complications and years of discomfort. It's not great to have, but now you know and can make her well.  
  6.   Yay!  Just wait a few months and then you'll be even better off!
  7. A pizza pan. I need another - darn kids eat too much now. LOL I also request gluten-free beef jerky from Santa and he usually leaves a big bag in my stocking. 
  8. New here

    Welcome to the board.  Cc is a problemwhen you are exposed to gluten. It sounds like you need to reduce the risk of being glutened by cc. Perhaps consider making the house gluten-free for simplicity.  Technically the rest of the family doesn't need to eat gluten, it just makes a nice texture in baked goods.  Maybe they can restrict their gluten to outside of the house so you can stay healthy and safe with greater ease? My house is gluten-free, and it REALLY simplifies things for me. If you keep a mixed house, you will have to be strict. Condiments, jams, butters, peanut butters and maybe even syrups ca not be shared. Shared toasters are a no-no too.  Consider cleaning things before you use them to prepare food even if they were supposedly put away clean. Off topic but, you will need to get your boys checked for celiac, and rechecked every two years for the rest of their lives.  They could have a 1 in 10 chance of developing celiac disease, and it could show up at any time in their life.  I hope you feel better soon.
  9. New and confused

    As Squirmingitch said, by 6 months gluten-free most celiacs are feeling quite a bit better.  The first few months will have symptoms returning for no apparent reason on occassion. It takes the body a while to stop producing autoantibodies after you go gluten-free, and you won't be truly well until it stops.  Give it time.   I bet you'll be feeling a fair bit better by Christmas. Hang in there. those first months are hard and stressful but once you find your new brands and make new habits it gets really easy.  To be honest, I often forget that I eat in an unusual way.  The only times it really becomes apparent is when I eat out (restaurant or people's homes), when I forget to pack food (rare now) and would like to stop for fast food (not usually safe) or when my kids are offered a snack and I have to check it before they eat it.  It doesn't come up more than a couple of times a month now. You'll get there.  :)
  10. Perhaps ask your doctor for a diagnosis of non-celiac gluten sensitivity (NCGS) and possible celiac - just so it's in the records. I too have IR and hashis.  I really enjoyed Dr Bernstein's Diabetes Solution book as a guide to how to change my diet.  Good luck with it.  :)
  11. It could be... Enterolab is not well trusted because their false positive rate is rather high, but there would be some actual positives in there too. Did you doctor run the full (medically accepted) panel of celiac disease tests?  They are tTG IgA, tTG IgG, DGP IgA, DGP IgG (deaminated gliadin antibodies), EMA IgA, total serum IgA (control test) and possibly the older AGA IgA and AGA IgG (anti-gliadin antibodies).  Each test can miss up to a quarter of all celiacs, more if they are gluten-free, so it is best to run multiple tests. If all tests were neative then chances are slim (but not zero) that you could have celiac disease BUT people who have the dermatitis herpetiformis expression of celiac disease (horrible, itchy, maddening rash) tend to have a higher rate of false negative blood tests.  If that is dh you have, you will have a harder time getting diagnosed.  If you do do more testing, you need to be eating gluten in the 8-12 weeks prior to testing. About 1-2 slices of bread per day. We have someone who is almost a dh expert (unfortunately for her). I'll point out your question to her and she may be able to help. Best wishes.
  12. Unfortunately, your story is pretty common.  I think being told "it's all in your head" should be a symptom of celiac disease - it would be a popular one. I first saw the doctor about my "tummy aches" when I was 8 or so. I remember being told that I was just one of those people who gets a stomacah ache ater she eats, and I should have a glass of milk with every meal.  Celiac can cause lactose intolerance so that never did help either.  I figured out my celiac disease, did the biocard test, and only went to the doctor to confirm it, 30 odd years later. I'm afraid I have to agree that many doctors are only good for acute medical emergencies and their prescription pad.  For that, I need my doctor. There are some good doctors out there, I've just never had one.  LOL I don't know if that is medical negligence.  It elt like it to me too, but people dont sue doctors up here (canada) unless the doctor has done something very wrong to them, and even then it is unusual.  I doubt missed celiac would be considered negligence up here.  Just guessing.
  13. Wow....   Your doctor is horribly ignorant.  Scary ignorant.  He did you a HUGE disservice  by telling you that you could still eat gluten after such a high positive result.  A false positive  celiac disease test is virtually always a weak positive test result.  In your case that would be a 13 or 14, not a 90 or >250. Yes, false (weak) positives can happen, but with the tTG IgA (tissue transglutiminase immunoglobulin A) it only happens about 5% of the time.  When it does happen, it is usually caused by diabetes T1, crohn's, colitis, liver disease, hashimotos's or a serious infection such as Lyme. 95% of the time a positive meas celiac disease. The deaminated gladin peptides (DGP IgA or DGP IgG) are also highly specific to celiac disease.  If you put the two tests together, that's a pretty sure thing. take a look at the diagnosis section of this report on celiac disease by the World Gastroenterology Organization for more info: Your biopsy, four years ago, was probably negative because you were gluten-free.  One needs to consume 1-2 slices f bread per day, or the equivalent, in the 2-4 weeks prior to the biopsy or results have a good chance of being negative.  Also six or more samples need to be taken to improve the chances that the a age s caught.  Celiac a age is often spotty, and up to 1 in 5 celiacs ends up with a negative biopsy. You  may need to be patient for your labs to normalize.  My tTG IgA was >200 and then dropped to a high 30 after 6 months gluten-free.  At 9 months it still was abnormal (above 14 or 20 a they changed the normal range on me).  I retested at 2+ years gluten-free and it was down to a 4.  It takes a long time in some. As for your current symptoms, it coul be withdrawal.  Soe feel worse before they get better.  Also, symptoms such as anxiety, neuropathies, ataxia and arthralgias can take longer to improve.  Often many months or up to a few years.   Hang  in there.
  14. The tTG testsaren't very fast to change and aren't good tests for checking dietary compliance.  The deaminated gliadin tests (DGP) would be the most likely blood test to show a single glutening, but that is a pretty slim chance too. Congrats on the ttG coming down!    You're moving in the right direction fairly quickly.