• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Anyone With Second Endoscopy After Going gluten-free ?
0

9 posts in this topic

my aunt had her follow up endoscopy recently after one year gluten free and a biopsy sample was taken

she was diagnosed witj celiac after having symptoms for 16 years and her initial endoscopy showed scalloping in all three parts of duodenum and her biopsy showed severe atrophy marsh 3C. now after 1 year gluten free strictly her endoscopy shows first part of duodenum is now normal but second and third parts still still show scalloping which is a sign of villous atrophy we are now waotong for biopsy results. i was wondering if anyone had a similar experience or how long it took for ypur intestine to heal ? i am worried that she still has damage even on endoscopy after one year gluten-free.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I've had four annual endoscopies.  The first three showed NO improvement -- the last finally showed minor improvement -- I went undiagnosed for decades, but my celiac doctor was surprised by what he saw each year.

 

How does your aunt feel?  

 

Has she had a subsequent celiac antibody panel to make sure she isn't accidentally ingesting gluten - this can happen sometimes with medications, etc.  

 

Have her symptoms improved? If so, I wouldn't worry about the damage for now -- stay as gluten-free as possible in this world and have another endoscopy after another year or more of healing.

0

Share this post


Link to post
Share on other sites

I've had four annual endoscopies.  The first three showed NO improvement -- the last finally showed minor improvement -- I went undiagnosed for decades, but my celiac doctor was surprised by what he saw each year.

 

How does your aunt feel?  

 

Has she had a subsequent celiac antibody panel to make sure she isn't accidentally ingesting gluten - this can happen sometimes with medications, etc.  

 

Have her symptoms improved? If so, I wouldn't worry about the damage for now -- stay as gluten-free as possible in this world and have another endoscopy after another year or more of healing.

thank you for the reply. my aunt had diarrhea all the time and after going gluten free for only weeks thw diarrhea went away and sje started gaining weight which she was never able to do. her follow up blood work is all normal

0

Share this post


Link to post
Share on other sites

thank you for the reply. my aunt had diarrhea all the time and after going gluten free for only weeks thw diarrhea went away and sje started gaining weight which she was never able to do. her follow up blood work is all normal

 

Then I wouldn't worry -- just keep living gluten-free and healing will happen.

0

Share this post


Link to post
Share on other sites

She may need a more careful diet.  Does she eat a lot of processed foods?  My son's last endoscopy was negative, but he eats very few processed foods.

0

Share this post


Link to post
Share on other sites
Ads by Google:


I'm just reading this article: http://www.medscape.com/viewarticle/779873

 

It says: "Refractory coeliac disease (RCD) is currently defined by persistent symptoms and signs of malabsorption after gluten exclusion for 12 months with ongoing intestinal villous atrophy."

 

To me, that looks like they expect you to be healed after 12 months.  

 

This article talks about a gluten contamination free diet for non responsive celiac patients: http://www.biomedcentral.com/1471-230X/13/40/abstract

0

Share this post


Link to post
Share on other sites

My samples were checked and rechecked by UCSD and Mayo and it was determined I never had Refractory Celiac Disease - although it sure felt like it for a very long time.  I even thought they were wrong at one point -- turns out they were right -- for those of us with severe damage from decades of undiagnosed celiac disease it can take much more than one year to heal.

 

I do agree that whole foods, nothing processed is the best way to heal the small intestine.

0

Share this post


Link to post
Share on other sites




My first biopsy at the time of diagnosis showed major damage. It was visible to the doctor.

 

A second examination and biopsy about five years later showed normal, healthy intestines and villi.

1

Share this post


Link to post
Share on other sites

One year is not very long to heal, especially if you went a long time before diagnosis.  It took me 3 years before every symptom went away completely, even though my blood work was stellar after one year gluten free.  If your aunt's entire small intestine was damaged, it will take quite awhile to heal but she shouldn't be worried about it.  This is the norm for many of us.

Refractory sprue is extremely uncommon and usually occurs in people who were never diagnosed until it's too late or they aren't following the diet well.  Your aunt is gaining weight, which is wonderful and a sign of healing. She just needs more time for the rest of her small intestine to catch up.

 

As far as the theory that many gluten-free foods are contaminated with gluten, I don't buy into that.  I am sure there are some but if all this gluten-free processed food were so contaminated, there would be very few of us who would heal.  The key is moderation in anything you do. So, your aunt shouldn't be afraid to eat a brownie......no one should!  :)

0

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

  • Forum Statistics

    • Total Topics
      107,377
    • Total Posts
      935,762
  • Member Statistics

    • Total Members
      65,065
    • Most Online
      3,093

    Newest Member
    CleoTheLeo
    Joined
  • Popular Now

  • Topics

  • Posts

    • Update: I have been taking Chanca Piedra (specifically, Royal Break-Stone, by Whole World Botanicals) on an empty stomach in the morning for the liver-gall bladder and surprisingly my lips are almost normal. I know the peeling lips may be caused by different issues but I hope this info helps someone.
    • Hi Cristiana, I'm so sorry that you are still not feeling well.  When do you go back to your Dr? I wish I could help more, but it's so hard to know what was what when I was on the PPI.  I was diagnosed with celiac and h. Pylori on the same day so I was already feeling awful.  Then I was put on 2 antibiotics with the  PPI.  I do remember feeling terribly nauseous, but just assumed it was the antibiotics.  When I started tapering, I still wasn't feeling well.  It really took months before I started to feel decent.  But I assume that it was the celiac. I really hope you start to see some improvement...((((hugs))))
    • @scorpio it has now been almost 2 years and I am curious if you ever found something that worked for you. My boyfriend suffers from EC as well and I am desperate to find a resolution for his sake. He's been dealing with it for over a year now and it is taking a toll on his work and social life.   Any updates would be helpful
    • I am going through the diagnosis stage as well. My family has strong history for celiac disease, and while I always had discomfort and other symptoms ( some of which i didnt know about) I wasn't tested until recently because I was DEATHLY afraid of needles. The results are highly positive but I am still getting a biopsy in early August. From what I have learned about it is that the endoscopy is beneficial to looking for not only signs of celiac but also other diseases that have similar symptoms to celiac. Because of your mixed result it wouldn't hurt to get a biopsy but it really is personal preference. I understand what you are going through and didn't like the idea much either but I really think it is something that can help you in the long run. P.S. There are lots of testing being done for new medications or other ways to "cure" celiac other than a gluten-free diet. It is my understanding that this can only be covered by insurance with a confirmed diagnosis (biopsy) but I don't need to get into that. The bottom line is that a biopsy is confirmatory especially since the doctors could see in the intestine, so to me, I feel better knowing that there's no chance of going gluten-free for nothing.
    • Hi Everyone!  Thank you for all your responses!  This site is so helpful and I appreciate everyone who replied to my post.   I was able to get an earlier appt with Maureen Leonard who was absolutely wonderful like you all said and after more testing and even a genetics test, my son now has a diagnosis of celiac disease.  He's been gluten free now for a few weeks.  He is doing very well on the diet so far.  He does seem to be sleeping better which was always a problem since he was an infant, so that is a good sign!  We test in 3 months and I hope that his iron levels go up. 
  • Upcoming Events