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

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts


  1. Celiac Disease & Gluten-Free Diet Forum

    1. Gluten-Free and Celiac Disease Calendar of Events

      Enter your group's Gluten-Free and Celiac Disease events here.

        (179,431 visits to this link)

    2. Board/Forum Technical Help

      This section deals with questions and problems related to the use of this forum. All "old pros" are invited to help answer questions from the newer participants.

    3. Gluten-Free Foods, Products, Shopping & Medications

      Discussions regarding which mainstream products are gluten-free and which are not.

    4. Celiac Disease - Coping With

      This part of the forum is for techniques and information on how to cope with celiac disease and the gluten-free diet

    5. Celiac Disease - Pre-Diagnosis, Testing & Symptoms

      Discussions related to testing for celiac disease.

    6. Gluten-Free Recipes - Baking & Cooking Tips

      Discussions about gluten-free baking and cooking.

    7. Celiac Disease - Post Diagnosis, Recovery/Treatment(s)

      Discussions related to one's diagnosis with celiac disease.

    8. Celiac Disease - Related Disorders & Research

      Discussions concerning other health problems associated with celiac disease, and celiac disease research

    9. Gluten-Free Restaurants

      Discussions about dining out gluten-free.

    10. Celiac Disease - Parents of Kids or Babies With Celiac Disease

      Discussions with other parents of kids or babies with celiac disease.

    11. Other Food Intolerance and Leaky Gut Issues

      Discussions about additional non-gluten food intolerance issues, including cow's milk (casein), soy, eggs, corn, etc.

    12. Gluten-Free Ingredients & Food Labeling Issues

      Discussions regarding which ingredients are safe and which are not, and food labeling issues.

    13. Gab/Chat Room - To Discuss Anything BUT Celiac Disease / Gluten-Free Diet

      General Chat Unrelated to Celiac Disease - Discuss most things here EXCEPT Celiac Disease / Gluten-Free Diet. Keep it light and avoid controversial topics like global warming, gay marriage, gun control, euthanasia, speed limits on the Autobahn, prisoner torture, etc.

    14. Celiac Disease - Publications & Publicity

      Discussions related to books, articles and other press about celiac disease.

    15. Dermatitis Herpetiformis

      Discussions concerning the skin condition associated with celiac disease.

    16. Gluten-Free Travel

      Discussions concerning how to maintain a gluten-free diet while traveling, including great gluten-free places to visit.

    17. Gluten-Free Diet & Weight Issues

      Discussions about how to lose or gain weight while on a gluten-free diet.

    18. Celiac Disease - Doctors

      Discuss experiences with doctors, how to find a doctor, etc.

    19. Celiac Disease - Teenagers & Young Adults Only

      This area is where Teenagers and Young Adults can discuss issues related to celiac disease and the gluten-free diet.

    20. Gluten-Free International Room (Outside USA)

      Discussions about living gluten-free in Canada, Australia, Asia & Pacific Rim, UK, Europe, etc.

    21. Celiac Disease - Pregnancy

      Discussions related to being pregnant with celiac disease.

    22. Celiac Disease - Friends and Loved Ones of Celiacs

      Non-celiacs discuss their experiences dealing with a friend or loved one with the disease.

    23. Celiac Meeting Room

      A Place where gluten-free people can meet each other--Adults only please.

    24. Celiac Disease - Sleep

      Discussions concerning sleeping problems and celiac disease.

    25. Gluten-Free Sports and Fitness

      Gluten-free athletes discuss fitness, sports nutrition, working out, etc.

    26. Celiac Disease - Support Groups

      Discussions concerning celiac disease support groups and support group meetings.

    27. Gluten Intolerance and Behavior

      Discussions concerning behavioral issues associated with the consumption of gluten.

    28. Super Sensitive Celiacs & Gluten Sensitive

      Non-scientific discussions for those who have been gluten free for at least 6-12 months and suspect they are reacting to lower levels of gluten than the vast majority of celiacs.

    29. Alternative Diets

      Discussions about alternative diets like the Vegetarian Diet, Specific Carbohydrate Diet (SCD), The Low FODMAP Diet. (FODMAP=Fermentable Oligo-Di-Monosaccharides and Polyols), etc.

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Posts

    • I understand. Poor thing, made doubly rough because 13 is a really hard age even in the best of times. OK, at 13 she should show the damage in the biopsies. I didn't know if she was 2 or 3 yrs. old & in those cases sometimes they just plain haven't lived long enough to be damaged where the biopsies pick it up - it can be so patchy then.  Gosh, I'm really feeling for her & you both and I so want to say take her off gluten the moment the endoscopy is over but I'm afraid to say that b/c I've seen some pretty weird things go on that you would never expect. Docs can be so uninformed! Please let us know how things turn out & send your daughter some hugs from me and tell her I believe her. Please let her know that most of us had been told by doctors they think it's all in our heads, didn't believe us, blew us off so we know exactly how she feels. Remind her her pedi believes her & he's been more helpful than the GI has.  Press the GI for 6-8 biopsies but a bare minimum of 6.  {{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
    • I have seen articles linking celiac to Barretts and esophagitis.  I've actually been subtly hinting to my boyfriend to get tested for celiac as well because he has some strange Autoimmune arthritis as well as Barrett's  and some white spots on brain MRI Not MS). One of the articles I read on Celiac and Barrett's actually suggested that most of the patient did not have actual acid reflux symptoms. Not sure if you ever did antibody testing for celiac, but sounds like you certainly want to avoid gluten. 
    • Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better. 
    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
    • In reflex testing they look at a result and decide if the next test is needed.  Another example, some labs only do EMA if the Ttg is positive.
  • Topics

  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member