Jump to content
  • Sign Up
  • Join Our Community!

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


Positive celiac panel and negative biopsy?

Rate this topic

Recommended Posts

Hello all, I come to you seeking advice as you all know more about celiac disease then the 3 doctors I have seen for it. I was diagnosed with celiac disease by blood test back in September and was told to begin a strict gluten free diet for life. I was told I woud not need to follow up with an endoscopy or additional testing as they thought for sure I had it because I lost 35 pounds (from 120 to 85) and my labs were very high:

Gliadin AB IGG -   >160

Gliadin AB IGA-   >320 

TTG IGA- >160

For some reason I just didn’t feel like I had celiac disease, other than the extreme weight loss and fatigue, I had no other symptoms. I also have Graves’ disease which is under control (they thought that was why I lost weight but decided it wasn’t). But I decided I wanted an endoscopy regardless of how many doctors told me I didn’t need it and now I’ve been told that I have no signs whatsoever of celiac disease. I have been stressed, depressed, confused since I was diagnosed 6 months ago and now I’m told it was a false positive?? When I look online, the false positives are usually just barely out of range but mine are so high? Do you think it’s really possible that the blood test is wrong and that I don’t have celiac disease? Im just so skeptical especially after being misled ..I hate to load up on gluten and years later regret it ..thanks in advance for the advice..sorry this is so long, so many details. Also, my gastro who is new to me, told me before the endoscopy that since I don’t get sick from gluten then why stop eating it? Ummm can it not cause cancer? He said he didn’t..but this is partially why I don’t want to ignore this if I might have it 








Share this post

Link to post
Share on other sites

Were you eating gluten prior to the endoscopy? If you were off of it, it may show negative even though your original antibodies weee high. I’d ask for another, and if you can handle it, you’d have to be on gluten for a number of weeks first. 

Graves’ disease and celiac are actually often seen together. I have both and have done a lot of research on it. 

Share this post

Link to post
Share on other sites

My biopsy was also negative because it took me 4 months to get an endoscopy.  I was very sick at the time of the High positive blood test.  We are all calling it celiac disease which had healed enough at the time of the endoscopy for it to be negative.  It just means the gluten free diet is working.  I will always have celiac.  

Other things went away after going gluten free which also is a sign that it is a correct diagnosis (anemia, fatigue, markers of inflammation on my CBC).


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

    • March 24, 2019 Until March 27, 2019
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 27, 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
    • March 30, 2019 Until March 31, 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 
Hello, new here and new to the whole thing! My husband has been battling this rash and assorted digestive issues for years. He was diagnosed with contact dermatitis by the dermatologist, had some steroid injections and various creams over the last couple of years, and then in November he went to the ER and they said eczema and gave him steroid pills. This was after a huge bloom that pretty much hit him from head to toe, where it had been mostly arms and legs before. He finally concluded he
  • Blog Entries

  • ×
    • Create New...