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.

        (179,420 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

    • Hi Weary, I think what you are talking about is refractory celiac disease.  Refractory celiac disease is when the immune system does not stop attacking the gut villi even in the absence of gluten for a long period of time.  I don't know a perfect treatment for that condition, but sometimes people use enteral (tube) feeding.  Refractory celiac disease is pretty rare so not many members have direct experience with it.  I posted a link to a thread started by glutenwrangler who used enteral feeding. I think in glutenwrangler's case they thought he had refractory celiac disease but eventually were thinking he had eosinophilic esophagitis.  But glutenwrangler hasn't been around the forum for years. I've read about people with Crohn's Disease using low dose naltrexone as  treatment. I think if you have a serious food problem doing the Fasano type diet for a year or more might make sense.  Maybe give your immune system more time to settle down?
    • Dear Weary, I am so sorry that this is happening to you!  😟.  I get the OCD thing.  Are you sure your meds are gluten free (dumb question, but had to ask)?  Have other AI issues been ruled out?  Did they do a follow-up endoscopy/colonoscopy/pill camera?  
    • I would talk directly to the executive chef. Generally a place of that caliber would know a thing or two about celiac but its usually best to gauge what the chef knows. They will make sure the staff knows to watch out for you. Always good to re-enforce the things you cant have on your food like soy sauce & flour thickeners. Some places use pre-mixed roux and other sauces and even the chef does not always realize whats in it.  Good luck  
    • If after having been gluten-free for several years, you get D after ingesting gluten, does that mean you have an unhealed gut? In other words, what is the pathogenesis of the D reaction in celiac disease – or better put: is D only a symptom of celiac disease when the villi are flattened? If true, that means after 6 years of being 99.5% compliant, my villi still are not healed!!!??? As Peter Greene says, “The system’s first line of defense is an intact mucosa [small intestines].” Plumbago
    • Hello all.  I am currently planning a golf trip to Bandon Dunes.  For any golfers out there you know this is a Bucket List trip that all golfers dream about.  I have checked their website and noticed that they do accommodate specialty diets, including gluten free.  However, I have not been able to find any feedback from someone with Celiac or someone that has first hand experience with eating gluten free there.  If anybody has and can share their experience it would be much appreciated.  The last thing I want to do when I'm there is worry about the food or not feel well.  Thanks.
    • Hi Carle, I didn't really get much better until I eliminated all grains.  I'm diagnosed Celiac for 6 1/2 years and still do much better without any grains.  I don't do dairy either because it causes me pain.  (Never was lactose intolerant.  Dairy "just" causes me pain.)  I still stick to mostly whole foods.  I still would not call myself "well"; just doing the best I can.  I was diagnosed after 6 decades of ingesting gluten and am pretty sure I've had Celiac since infancy. You definitely are not alone.  I just try to do my best, remain optimistic, and count my lucky stars that I don't have it worse.   Just keep trying different foods until you find what works the best for YOU--as long as you remain gluten free, of course. Life is still good.  Hugs to you!
  • Topics

  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
    Alex Kalyn