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Anyone With Second Endoscopy After Going gluten-free ?

PersianCeliac

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PersianCeliac Contributor
PersianCeliac
Posted

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.

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GottaSki Mentor
GottaSki
Posted

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.

PersianCeliac Contributor
PersianCeliac
Posted
  • Author

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

GottaSki Mentor
GottaSki
Posted

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.

dilettantesteph Collaborator
dilettantesteph
Posted

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.

dilettantesteph Collaborator
dilettantesteph
Posted

I'm just reading this article: Open Original Shared Link

 

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: Open Original Shared Link

GottaSki Mentor
GottaSki
Posted

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.

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psawyer Proficient
psawyer
Posted

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.

  • 2 weeks later...
Gemini Experienced
Gemini
Posted

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!  :)

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      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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