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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 arlingtonmom

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  1. I know this doesn't completely answer your question, but I just wanted to add something. My son is currently on a gluten free diet to see if it helps relieve symptoms he is having. Our ped gi also believes he may be lactose intolerant (not as a temporary condition as a result of gluten intolerance but as a primary trait). Anyway, we're going lactose free next month. She told me the Lactaid tablets need to be taken every time before lactose is ingested. I'm not sure if this is what you've been doing with your son. She also recommeded a new product called Digestive Advantage for Children that only needs to be taken once a day. My son is 3, so I'm not sure if the dosing is safe for infants, but my doctor did say that if we couldn't find the ped version he could take the adult version. So, she must have felt it was fairly benign. Either way I'd check with a doctor first. The label of the product will probably say some disclaimer like check with your doctor before giving to young children, so I don't think you'll get an answer from a manufacturer. Hope this helps.
  2. Biopsy Back

    Thank you so much for all your insight. I guess all I can do is start the diet, and go from there. I also would like to look into further testing. Like Tom I'm wondering what's the test for gut permeability? Osteoporsis does run in my family and so does thyroid problems, so I'm also going to push for a bone density. Are there gene tests that determine is someone is susceptible to thyroid problems. Again, thank you so much for listening and the sound advice. gluten-free, here I come.
  3. My doctor just called, and said that my biopsy did not indicate any signs of celiac. I believe she's a good doctor. She studied under Dr. Green at Columbia so she's well versed in Celiac, and she took many biopsies (12, I think). She also offered to send the slides to another pathologist that has extensive experience in Celiac, which I'm going to do just in case. So, now, I'm left with negative blood tests and a negative biopsy. However, Enterolab said I had the DQ2 gene, and another gluten sensitive gene, and enterolab also indicated that although I was not yet having an autoimmune response I was producing antibodies to gluten, and therefore, should permanently eliminate gluten in order to prevent further symptoms or damage. So, thanks to all the knowlege I've gained from this board, I know my next step is to try the gluten-free diet, and see if I feel better. Here's my question. My doctor said that if I am non celiac gluten intolerant then gluten just makes me feel bad, but it won't do any damage to my body. Therefore, if I feel better gluten-free, great, but I don't have to worry about cross contamination or trace amounts if it doesn't effect how I feel. Are there any studies that show systemic damage due to ingesting gluten when someone is non celiac gluten intolerant. If not, I'd love to know about people's opinions and experiences regarding this. I'm just afraid that I've been given a license to cheat, but 10 years from now I'm going to end up diabetic because I continued to eat small amounts of gluten. On the other hand, I don't want to limit my lifestyle and restrict everything if not necessary. Any thoughts? Thanks
  4. Had Biopsy Yesterday

    Doll and Finally Diagnosed, Thanks so much for taking the time to reply. I guess the bottom line is I just have to wait, ugh! However, it does sound that it's not normal to have any scalloping so either way I need to find out what's causing it. And, it's Arlington, VA.
  5. I had my biopsy yesterday, and I must say it's killing me to wait a week for the biopsy results. During the endoscope the doctor saw what she described as mild scalloping. I know this is consistent with celiac, but not definitive. However, in your experience does mild scalloping usually correlate with a positive biopsy and diagnosis of celiac? Thanks for any input.
  6. Scope In Two Weeks

    Emily, thanks for your help. I'll try to choke down as much as possible.
  7. I'm schedule for a scope in two weeks. I have not been gluten free, but there have been days that I've avoided obvious gluten. My blood tests for celiac were negative, but I do have the gene and I'm having strong symptoms, so I'm going to be scoped to try and find a diagnosis. I've been told to load up on gluten for two weeks. Is there a consensus on how much gluten I need to eat before the biopsy. My doctor is on vacation this week, and I left her office without clear guidance. Thanks so much.
  8. Thanks so much for everyone's thoughtful responses. I'm going to keep the appointment with Georgetown. I looked up the ped gi's bio again, and she did her ped gi fellowship at Columbia, so I'm hoping she had some training in the Celiac Center. I'm scheduled to have a scope the day after my son, so hopefully we'll start getting some answers. I'll keep you posted, and thanks for your help. Electra375, thanks for all the information. It's so upsetting that even the biopsy isn't too reliable. I have heard wonderful things about Dr. Fasano, and I wasn't part of the conversation, so perhaps it was a problem with the ped endo asking the right questions or relaying the info to me. Also, thanks for the tip about really loading him up with gluten before the biopsy. I was told not to avoid it, but I had no idea he needed to eat so much. Looks like I better send his own snacks to preschool this week. Thanks again.
  9. Fiddle Faddle, thanks for your input. Unfortunately, my son's blood tests were negative, but because he's so young and because he is experiencing symptoms which strongly suggest celiac our doctor has suggested he be scoped, and I agree. Also, the Enterolab test showed that he was having a immune reaction to gluten. And, I would still like to pursue a firm diagnosis because I'm not sure I want to rely entirely on Enterolab. Electra, thanks so much for the personal message and feedback. Everyone has given me such positive feedback about Dr. Fasano, but I do have a concern I'd like to address. My three year old son was originally referred to a ped endo because he was not growing well, and he had fallen off his growth charts. An endo at Univ of Md was recommended to us. She ran a lot of tests. One of the tests was the celiac blood tests. My son's blood test came up negative; however, the tests did show that he had the DQ2 gene. The ped endo then told me that the blood tests were extremely reliable, and that if he were going to have a reaction to gluten it would have shown up by age two in the blood. From my own research I knew that Celiac can manifest at different times after the age of two, and that the blood test aren't always so reliable in three year olds. Also, my son was having gi symptoms. She told us to come back in six months to explore other options such as a growth hormone deficiency, but I wanted to pursue celiac further before I eliminated it as a possibility. I ordered the Enterolab test, and the test showed that my son was having an immune reaction to gluten, and that he had two gluten sensitive genes. I called back the endo to ask for her read on it. She consulted with Dr. Fasano, and then, told me that the Enterolab tests were unreliable, and my ped endo stated that based on her conversation with Dr. Fasano it wasn't necessary to further pursue celiac. Now, I am not surprised that Dr. Fasano dismissed the Enterolab testing, but I was surprised that he didn't suggest to the ped endo that my son could still be a celiac. When I called Columbia it was the complete opposite, and they told me he should definitely be seen. Anyway, I guess I'm concerned that I'll cancel this appointment at Georgetown, and then, Dr. Fasano will dismiss us. Any thoughts from Electra or others? Thanks again for taking the time to help. I really appreciate it.
  10. Thanks so much for everyone's input. It looks like I won't be able to get in to either Columbia University or University of Maryland for several months, and I hate to have him suffer any longer. So, at this point, I think I'm going to keep my appointment with Georgetown and hope all goes well. Then, possibly, send the biopsy slides for a second opinion if the results are inconclusive or negative.
  11. My three year old is scheduled to be scoped at Georgetown University Hospital by Dr. Rekhtman, a ped GI, on August 7th. Just out of curiosity I called Columbia University to see how their consultation services work because I have read on this board and others that people have sent their biopsy slides to Columbia for a second opinion when the results were inconclusive. The woman at Columbia told me that we should cancel our scope and wait for an appointment at Columbia. She said that other doctors are so poor at performing scopes that it'd be worth the wait and the travel. I know that it's true that a doctor needs to know what they're doing when taking the biopsy samples, but could it be true that I have to travel to Columbia to receive competent care when I have access to Georgetown? I'm disappointed and confused because I really hate to wait months to be seen, but I also want what's best for him. Any thoughts or experiences are appreciated.
  12. Doctor Northern Va Or Dc

    Thanks for everyone's help. I'm going to try to make an appointment with Dr. Mirkin because I'd like to attempt to try to obtain a diagnosis before I try the diet. I really do appreciate everyone's input.
  13. Doctor Northern Va Or Dc

    Can someone recommend a doctor in Northern VA or Washington, D.C. that is open to pursuing a diagnosis for Celiac or gluten sensitivity even if my blood tests for Celiac were negative. I'd like to find a good GI doc before trying the gluten free diet because I'd like assistance in tracking progress, such as having someone order a bone density scan before and after the diet. and I'd like to rule out other causes of my symptoms. I did test positive for gluten sensitivity with Enterolab, so if anyone knows a doctor who won't be quite so cynical about the test that would help too, but it's not a requirement. I saw Dr. Garone and Dr. Lee mentioned in previous posts but I didn't know if they are great doctors if one has a positive blood test or if they'd be open to pursuing a diagnosis even if blood tests are negative. Thanks.
  14. No Glu Girl, Thanks for the list. It was really helpful.
  15. Thanks so much for everyone's help. I just went for my own blood tests yesterday, so we'll see what they say. We're going to see a ped GI in a couple weeks, and I'll discuss our options with her. But, I think our plan will be to try the diet for six months, as you've suggested, and see how it goes. What a great resource. Thanks again.