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


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About MistyRG

  • Rank
    New Community Member
  • Birthday 10/21/1973

Profile Information

  • Gender Female
  • Location Texas
  1. I read on the University of Chicago website about what you should be tested for each year after diagnosis. My doctor isn't very knowledgeable on Celiac, and I am coming up on 2 years since diagnosis. At my last appointment (which was the first since diagnosis), I asked her to run the testing again to see if my numbers look good. She ran a "Celiac Panel" (all the lab slip said), and when they called me with the results, they said it was negative and to keep doing what I'm doing. I don't have the report in hand yet, but I wanted to see if anyone knows if this is good news . . . or really no indicator?   I have been gluten-free for almost 2 years, but my family (husband and 5 kids) still consumes some gluten in the house. I am always worried about CC or the goldfish kisses from my kids!!! We eat out a few times a month, and, well, you can never be sure there!!! I just wanted to make sure I was definitely on the right track and healing.   Thanks!!
  2. I have 5 kids, and these days are the WORST!!!! I recently purchased some sublingual vitamin B that seems to help. I also grab some caffeine. I know it's bad, but it is harder when I have 5 kids needing my attention when all I want to do is nap!!!
  3. I have said since I was diagnosed that I don't have the "normal" symptoms. I only had the rash that started this whole ordeal. Now, 4 months into gluten free, my slip ups or unknown gluten is known immediately. I get a heavy, bloated feeling in my stomach, and it cramps up a little. It isn't bad, but it has progressively gotten worse with every exposure. On one hand, I'm glad because I can tell when I am eating something that could be contaminated. But I am really shocked at how much I have changed from zero symptoms to noticeable in that short time!!! And when I had zero symptoms, my biopsy came back with severe damage to my intestine. So even with no symptoms, we are doing damage.
  4. I was diagnosed in June, and I decided to get my oldest 2 kids tested. My daughter (5) has complained of stomach pains and issues for the past year. My son (9) has no issues. Ironically, her tests were all normal, but my son's tests came back abnormal. Being new and not really doing anything but asking the pedi to run a celiac panel, I didn't know what they ran. (I can't find my lab slip to see what was run on me!) Here are his results . . . Immunoglobulin A (IgA) <7 (normal is 33-202) Endomysial IgA <1:10 (normal <1:10) TTG IgA 1.1 (<4 negative) His only abnormal test is the first one, which is really low. His pedi called a pedi GI specialist who said the low IgA will throw off the other 2 tests, and they asked her to run the IgG tests. So we are waiting on those results. Everything I have read say that a low IgA can increase their chance of developing an autoimmune disorder, and since mom has Celiac, it's not a reach to figure that out!! I am very anxiously waiting on the other results. I just wanted to see if anyone had more experience and information on this while I patiently wait!!!
  5. Do you get retested to make sure you are healing your body after going gluten free? I don't have a lot of symptoms or issues. Yet my biopsy came back "severely damaged." So I am wondering if my doctor should retest my blood work or something to make sure I am on the mend and not eating hidden gluten since I may not even know.
  6. New And Needing Some Help :(

    I had my testing ordered by my allergist after doing some research. She was happy to order the lab tests (Celiac panel), but she couldn't do anything for me beyond that. I would go see a GI doctor. He has been the most knowledgeable for me! After my lab results came back positive, I did have the intestinal biopsy. It was a VERY easy procedure!! Good luck!
  7. Anyone have an idea on this one? Of the Celiac panel, 3 of my 5 tests were positive. Endoscopy is positve. So I have Celiac. However, during the wait, I had my rash biopsied. It came back negative for DH but could be 4 other issues including lupus. So they ran an ANA test on me. Negative is < 1:40 Mine was extremely positive at 1:640 I am out of town and can't see my doctor for a few more weeks. I am hoping this has something to do with Celiac, but I am now being referred to a rheumatologist for futher testing. I'm hoping it's just Celiac related . . . otherwise I feel like I may be falling apart!!!!
  8. I got the results back from my endoscopy, and I do have celiac. I am relieved that I wasn't crazy!! I am VERY thankful to have a great team of doctors that listened to me and ran the tests I requested without question!! I am extremely lucky that my diagnosis took only 2 months from rash to positive diagnosis (though rash is negative for DH! Go figure!!). So I am officially here . . . and it really hasn't been as difficult as I thought it would be!!! Oh . . . and I wake up feeling RESTED for the first time in years!!! I used to blame it on my kids . . . guess it was just the gluten!!!
  9. Negative

    While waiting for my endoscopy, I had 2 biopsies of my rash. Both came back negative. Actually, one came back with 4 other possible issues, and they ran some more labs. But I don't believe it!!! The rash was the reason I started this "could I have celiac" journey. I do have a positive intestinal biopsy. So celiac is confirmed . . . I just can't see how this rash could be anything OTHER than DH!!!
  10. Hi, I saw you on my profile. I lost my mother to lymphomia at age 47. I'm sorry about your father. She didn't even have a chance to meet my husband. I hope things improve for you and you get this figured out.

  11. Intro With Lots Of Mixed Emotions

    It's amazing to me how many light bulbs start going off when you figure something like this out. I know for me, I went back through my life and kept making check marks on the "list of symptoms!" It was amazing . . . and while I didn't want Celiac, it's nice to know that all these problems I have dismissed all my life actually have a cause!! And one I can take care of!!! I am sorry about your mother. I lost my father to non-Hodgkins Lymphoma in 2001 (age 47), and it is one of the main reasons I pushed so hard for testing. I don't want to be undiagnosed and have something horrible happen. Welcome . . .
  12. My rash is extremely itchy red bumps. Some are clusters and some single. Some had fluid filled blisters. I have had 2 outbreaks, and they started on my elbows ans went up and down my arms. Then spread to my knees. Pics. Thank you for your replies! It is hard yo be patient!!
  13. I had my intestinal biopsy done today. Preliminary report is that everything looks normal. I should be happy, but I am confused! I know we have to wait for the results for a definitve answer, but I guess I assumed they would see something. Has anyone has a normal looking preliminary result followed by a positive biopsy? I am also waiting on biopsy results of my rash. Is it possible to have the rash positive and maybe too early for intestinal issues? I had 3 positive blood tests, including a positive EMA. Everyone says that is celiac specific showing damage, which is why I am confused with the "normal" report. Thanks!
  14. 5 Year Old Boy, And Possibly Me?

    I've been going through this as well. Do I want to put my kids (5) through testing so we KNOW . . . or just have them go gluten free? If there was a rash, I wouldn't hesitate to get that biopsy. It's quick and painless!! I am more leery about the endo on them. Personally, I am getting the celiac panel on all the kids, and we'll go from there. I would hate for them to NEED a diagnosis in the future and have to reintroduce gluten for a while before being able to get an accurate biopsy and diagnosis. I want to know if I can be a bit relaxed when they go to friends' houses or parties . . . or if I need to send food!!! I am still new at this (and waiting for an official diagnosis), but I would give him crackers. If it causes a flare up, it gives the doc more to work with. I would think that a skin biopsy will come up positive for DH if it is DH whether you are eating gluten or not. Right??? I understand the intestinal biopsy would be inaccurate, but if there is a rash, it seems that it wouldn't be affected by diet. I have read a few stories of DH flare ups while gluten free. So that could be normal. I guess the biopsy is up to you. If you are already diagnosed, it will only tell you what the rash is. Then again, if it isn't DH, you may want to know what the rash is from!!!
  15. I posted a similar question a couple weeks ago . . . my version of grasping at straws!!! I was told by my doctor that with the EMA positive, he would be shocked if I don't have a positive biopsy. It is Celiac specific test (as others mentioned). Welcome . . .