Jump to content
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?


How Were You Diagnosed?

Rate this topic

Recommended Posts


Sorry- I haven't used the poll option in awhile. Arrrggghhh! Please keep THIS as the post and disregard the other two. thanks, B

Share this post

Link to post
Share on other sites

Had to figuire it out for myself. The doctors just wanted to take my insurance company for a ride and pump me full of drugs.

Share this post

Link to post
Share on other sites

Diagnosed twice here actually.

First time, in my early 20's, after over a year of diarrhea, doubled over in pain, hospitalizations, etc. Dr. diagnosed celiac disease. Then, after almost 2 years on the gluten-free diet with no response, he started the "Okay, maybe it IBS, then maybe its Crohn's",and alas, the diagnosis roller coaster began.

Then, about maybe 4 years ago, after symptoms worsening and pain unbearable, was sent to a different GI. This time, bloodwork was available that confirmed it was indeed celiac. Biopsy showed my intestines were smoother than the inside of a garden hose. After a couple of years on the gluten-free diet STILL without positive reponse, (we are talking over a decade of permanent diarrhea).I was then sent to a professor at St. Mike's here in Toronto who specializes in celiac disease. He did a colonoscopy that showed collagenous colitis. We have tried several treatments so far, still with no success. First the bismol treatment (LARGE doses of Pepto Bismol for 8 weeks), budesonide (started out hopeful, then got worse again) , prednisone, all without success. Now he is trying me on Clonidine, which is a blood pressure medication (even though I have low blood pressure!) What we are hoping for actually is the major side effect of Clonidine, which is constipation. No such luck though.....

I go back to see him the end of March to see what our next course of action is.....


Share this post

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Top Posters +

  • Upcoming Events

    • April 17, 2019 Until April 27, 2019
      April 17-27, 2020   For the past few years many of you have asked us to arrange a River Boat Cruise that will allow us to visit Amsterdam's famous Keukenhof Gardens at its prime time of the blossoming of the millions of Tulips and Hyacinths - alongside the windmills of the Netherlands.  With the participation of a minimum of 20 persons we have arranged an All-Inclusive Cruise from Antwerp to Amsterdam.  This cruise will not be offered to the public until January, 2019 and always sells out quickly.   THERE WILL BE NO MONEY REQUIRED NOR COMMITMENT FROM YOU until we have all the final costs and details.  If you are at all interested check out our website for as many of the details that we have as of this time.   We need your request to be placed on a list of interested participants so we can present that number to Uniworld to show we have the sincere interest in this All-Inclusive Bob & Ruth's Gluten-free Cruise.   PLEASE CHECK OUT OUR WEBSITE FOR THE DETAILED INFORMATION THAT WE HAVE AS OF THIS TIME.   http://bobandruths.com
    • April 24, 2019 04:00 PM Until 08:00 AM
      Celiac Emotional Healing Support Group
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • May 04, 2019 Until May 05, 2019
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
  • Create New...