Jump to content
  • Join Our Community!

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

Rate this topic

Recommended Posts

I've been dealing with digestive issues, extreme fatigue, anxiety, depression, and brain fog for a while, nearly 3 years if I'll be honest. Digestive issues primarily in the last year and a half. I switched PCP's and the new doctor tested me for Celiac. The blood test came back positive. But, the biopsy I later had came back negative. Only one specimen was tested. After the biopsy, before the results, the GI specialist told me I could start my gluten free diet. 

So, I've been on a gluten free diet for three weeks. My digestive issues have improved greatly. Stools are starting to look normal again, and my energy is getting better every day, and the brain fog feels like it is lifting. 

Deductive reasoning tells me that if I have a positive blood test, negative biopsy, but show positive results on a gluten free diet that I have Celiac Disease. I'm waiting on word from my PCP about what this means for the Celiac Disease diagnosis, but welcome your thoughts! 

Share this post

Link to post
Share on other sites

Yes, positive blood & positive results on a gluten free diet -- you got it! Here's the problem -- the GI only took ONE biopsy???!!!!! Grrrrrrrrrrrrrrrr!!!!!!! The small intestine, when flayed open & spread out, will cover a tennis court. 1 biopsy has such little chance of hitting the sweet spot where the damage is. There are supposed to be a minimum of 6 biopsies so you got cheated by 5. I don't know what your docs are going to say about an official dx of celiac b/c the GI screwed up so badly. You would have to go back on gluten for a minimum of 2 weeks & get another endoscopy, done right this time, & I bet you would have positive biopsies but I certainly can't blame you for not wanting to go that route!

Do you have copies of your celiac blood panel results & reference ranges & the pathology report from the endoscopy? Could you post them here?

Share this post

Link to post
Share on other sites

ONE biopsy? Considering the expense and inconvenience of the whole procedure, one has to ask "Why just one?" Sadly, professional skills are always questionable. You might want to ask them what they actually SAW in the endoscopy and why they only chose one, perhaps everything looked so good and normal that they felt no more were needed. ASK.
 Biopsy interpretation is also often very subjective, you can ask to have the sample (or digital photographs of it, which should have been taken) reviewed by someone else. Often one expert will say "Normal" and another will say "Grossly abnormal..." and it depends on the skill of the interpreter.

 In the meantime, if a gluten-free diet makes you feel better--do it. Probiotics like PB-8 will often make a difference. It is only recently that gut biomes and probiotics have even been recognized as having a major role in these things. There are also "non celiac gluten sensitivity" cases, where a celiac diet is the effective solution, even though Celiac is not confirmed as the cause. Getting to the real experts, and getting their best opinions, is not always easy. never be afraid to ask "Why?" or "What?" and the really good docs will always be glad to explain and answer. If they don't have time for that--find a different doc.

 Go back a mere 20 years, and there may have been six doctors in the whole world who had any grasp of Celiac. One in Australia, one in Japan, maybe two in the US....This is all new medicine, and only recently having any real research with not many answers, yet.

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

    • June 19, 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
    • July 07, 2019 Until August 03, 2019
      For more information, visit www.kefss.com or call (407) 255-6550. info@kefss.com 

      KEF USA Summer Camps Announces the New KEF Gluten-Free Camp in Orlando, Florida for Youths with Celiac Disease.

      [Orlando, FL February 6, 2019]-KEF USA is excited to announce that we will offer a new 100% gluten-free camp program to give kids and teens with Celiac Disease a safe, exciting and healthy summer. KEF USA programs offer fun and unique experiences that can only be found in Orlando, Florida. Campers explore the theme parks and local attractions, make new friends, discover new interests and create memories that last a lifetime.

    • July 08, 2019 Until July 09, 2019
      14th Euro-Global Gastroenterology Conference happening in Zürich, Switzerland during July 08-09, 2019. We are expecting more than 300 attendees representing from more than 40 countries who would be sharing their experiences and expertise around the world Theme: “Future Perspectives and shaping trends in Gastroenterology”
      You may learn more about our congress by visiting our website: https://europegastroenterology.gastroconferences.com/
      Microbiota and diseases|Acid Related Diseases|Helicobacter Pylori Treatment|Therapeutics targeting Microbioma|Advanced Nutrition and Dietetics in Gastroenterology|Inflammatory Bowel Diseases|Clinical Advances in Liver Diseases|Gastrointestinal Disorders and Drug Delivery|Obesity and Treatments|Gastrointestinal Pathology|Neuro Gastroenterology and Motility disorders|Pediatric Gastroenterology, Hepatology and Nutrition|Gallbladder and biliary tract Diseases|Latest advances in Gastroenterology treatments|Endoscopic Innovations in Gastroenterology and surgery|Clinical and Radiographic Gastrointestinal Abnormalities|Functional GI Disorders|Changing Trends in Etiology of Liver diseases|Epigenetics of gastrointestinal diseases|Bariatric Surgery|Gastrointestinal Radiology and Imaging|Developing treatment for Viral Hepatitis and Fibrosis of Liver|Emerging Trends in Clinical Research of Liver diseases|Hepatitis B treatment Patterns|Therapies in Pancreatic cancer|Diabetes and hepatocellular carcinoma|Intestinal Metaproteomics and Type 1 Diabetes
      Conference Benefits
      ·         CME Credits  
      ·         CPD Credits
      ·         Research publication in proceeding book
      ·         Abstract publication in associated online journal
      ·         DOI by Cross-Ref
      ·         Online speaker webpage
      ·         Workshops and Symposium
      ·         Certificate for participation and attendance
      ·         Young Researchers Forum and Posters Award for Students
      ·         B2b and Networking meetings
      Program Director
      Sophia Williams
      Gastroenterology 2019 | Zürich | Switzerland
      conferenceseries.com https://europegastroenterology.gastroconferences.com/
      E-mail: williams.sophiaa@yandex.com
      Whatsapp us : +442382146717
  • Create New...