Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up
0
Myooshka

What Is The Need For Official Diagnosis?

Rate this topic

Recommended Posts

Myself after being living with an undiagnosed illness for four years which is still undiagnosed, have a very poor view of the medical community so forgive me for being jaded but.......what are peoples opinions having to have an official "Celiac" diagnosis. My son is testing negative but he is having a lot of diarrhea and other problems so we are going gluten free and if it helps we will stick with it. Unless it will be of benefit for my two year old to be put under and biopsied I would rather just see if removing the gluten helps. Be darned if I am going to chase these doctor's meanwhile keeping my son sick on gluten just to get an official diagnosis from a medical doctor. So....besides having the official diagnosis,is there any other benefit to have the biopsy? Thanks and again I apologize but with friends and families experiences with doctors, I have all but lost faith in modern medicine.

Share this post


Link to post
Share on other sites

One of the pros of the biopsy is that they are looking for other things during the endoscopy - they could find Celiac, they could find something (or more than one something) else, or they could find Celiac + something else. Many "something elses" may not be found if not for the endoscopy.

Share this post


Link to post
Share on other sites

There are pros and cons to the biopsy. It is a procedure that will be preformed under sedation or a general anesthesia. It is rare to have an adverse event but things can happen. It is also possible to have a false negative on the biopsy. This is true for those of any age.

This is only my opinion but if it was my 2 year old I would give the diet a good very strict try for a bit and then if there are no improvements consult with the GI about the endo or more testing.

Do be well aware though that for an endo for celiac we MUST be eating gluten. If when you add back in gluten, (if you decide to try the diet first), you must do so for up to 3 months to have any chance of the endo being accurate. If your little one reacts when you add gluten back in that also is diagnostic as far as some doctors are concerned.

Share this post


Link to post
Share on other sites

There are pros and cons to the biopsy. It is a procedure that will be preformed under sedation or a general anesthesia. It is rare to have an adverse event but things can happen. It is also possible to have a false negative on the biopsy. This is true for those of any age.

This is only my opinion but if it was my 2 year old I would give the diet a good very strict try for a bit and then if there are no improvements consult with the GI about the endo or more testing.

Do be well aware though that for an endo for celiac we MUST be eating gluten. If when you add back in gluten, (if you decide to try the diet first), you must do so for up to 3 months to have any chance of the endo being accurate. If your little one reacts when you add gluten back in that also is diagnostic as far as some doctors are concerned.

Thanks for the replies. One thing I would be concerned about with the biopsy is also misdiagnosis, because isn't Celiac frequently misdiagnosed as Krohns?

Share this post


Link to post
Share on other sites

Thanks for the replies. One thing I would be concerned about with the biopsy is also misdiagnosis, because isn't Celiac frequently misdiagnosed as Krohns?

celiac disease and Crohns disease affect different parts of the bowel - and a biopsy would look very different under a microscope - although the symptoms may sometimes be similar.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Top Posters +

  • Upcoming Events

    • February 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      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 24, 2019 Until March 27, 2019
      0  
      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 30, 2019 Until March 31, 2019
      0  
      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.
      ABOUT THE NOURISHED FESTIVALS
      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 
       
×