Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • 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


  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About txmama

  • Rank
    New Community Member
  1. My 3 yo dd is in the process of getting diagnosed. Her appt. was last week. She was vomiting daily for a year and a 1/2, and stopping the gluten stopped the vomiting. When the doctor discussed our testing options, he made it clear that it was our choice whether to do the testing that required her to continue with gluten or to keep her off gluten and be satisfied with the testing that we can do. Since her reaction to gluten is so extreme, the choice to keep her off the gluten was easy. The dr. ordered the Celiac panel, the genetic test, and a wheat allergy rast. The panel could be negative since she had been off gluten for a week. However, he said there was one marker that could be detected for up to 2 weeks after going gluten-free. The genetic test can rule out Celiac if you don't have the genes, but he said you can carry the genes and not have the disease. If dd has the genes and/or marker, the diagnosis would be Celiac. If she doesn't have the genes, he's going to order allergy skin testing. We are supposed to get the results anytime. In the meantime, she feels great, and she's learning to enjoy food again If your child is just miserable on gluten, this is the way I would go. I'm disappointed that your dr didn't give you the option of removing gluten immediately and getting on with the healing.
  2. We just had an appointment for my 3 yo dd like this last week. After a year and 1/2 of vomiting daily, despite the max dose of Prevacid and fundoplication surgery, I stumbled onto the diagnosis when we inadvertently went gluten-free for a week and she got better. Like you, I was also worried that the dr wouldn't appreciate that I had figured it out myself. I typed up a 2 page long history of her symptoms--when they appeared, when they stopped, what I noticed, etc. I had stopped keeping food diaries, so I just sat down with a calendar and figured out the timeline. (I even went back to my 'sent' emails to get exact dates.) When I got to the dr, I handed him a copy and basically read it to him from another copy. Hopefully making a written record will help the dr take your ideas seriously. As someone else said, however, it will probably depend on the doctor. Having had numerous crappy doctors, (one told us her vomiting was due to a traumatic brain injury that we just didn't know had occurred!), we no longer waste our time with local specialists. We drove the 7 hours to Texas Children's Hospital for our appt. It may be that you will have to make a trek to a better facility. Hopefully not. Our dr thought that dd's dietary response "was compelling," and said we need to find out if it's a wheat allergy or Celiac. Since she had been off gluten for about a week, he said the Celiac panel might not show up, but that the genetic test could rule it out. (You have to have the genes to have Celiac.) He also did a wheat allergy rast. We're waiting for the results now. Hope this helps! Good luck!
  3. Thanks for the encouragement. One thing I have going for me is that her dietary response is SO extreme. One day she vomits all day, the next she's vomit-free (on gluten-free). Hopefully, that will impress the dr, as I would like support and information from him (and not skepticism). I've written up the timeline ahead of our visit to go through with him. My dh and I have already decided that continuing gluten for the sake of a diagnosis is out of the question given her reaction, and he can't stand the idea of putting her through endoscopy. So, we're prepared and decided on that front. If there's anything else any of you can think of that we should know or consider going into the appt. tomorrow, I'd appreciate hearing it. Carly
  4. My 3 year old daughter was diagnosed with reflux because of daily vomiting. Even after a Nissen fundoplication last year, she continued to vomit frequently and has only been able to eat small amounts of food at a time. The doctor had ruled out celiac disease after a negative blood test and a not particularly successful trial of a gluten-free diet. The problem was that by the time we removed the gluten, she had stopped eating ANYTHING. In retrospect, I think maybe it was hard to see any results, because she had already developed such a huge aversion to food. Shortly afterward, we had to get an NG tube and enroll in an inpatient feeding program to get her eating again. As soon as she started eating again, the vomiting began. She was dairy-free, but otherwise had a regular diet. Throughout this year of hellish vomiting, she would have a few good days where she didn't throw up, which seemed inexplicable. Then 2 weeks ago, she suddenly stopped vomiting and began to ask for food, to tell me she wanted to eat, stuff she's never done before. This lasted 5 days. I was looking for anything I could find to explain this. What was different? I had bought that gluten-free Gorilla Munch cereal instead of her usual wheat-based--get this--because I had a coupon! And it just so happened that I didn't give her any pasta, etc. for meals. So, she had five good days, until I made pasta and lentil soup for dinner one night, and she threw up a few hours later. This took me several days to piece together, and as soon as I did, I stopped the gluten. It's only been 3 days (but no vomit at all since!). We have an appointment with a new GI doc on Wed at Texas Children's in Houston. Will a blood test be more accurate at 3 than it was at 18 mo.? Will this short period of gluten-free (less than a week) interfere with the test? Should we ask for genetic testing? Should we expect the doc to give a lot of weight to the results of the diet, or are they skeptical about this? Thanks for your help!