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Cause of decreased folds in duodenum?

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Celiac Disease
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k.kgirl
New Member
Joined : Mar 2014
Posts : 7
Posted 11/4/2016 9:29 PM (GMT -8)
Cause of decreased folds in duodenum?
I had a endoscopy and it showed that I had decreased folds in duodenum. What is that?


Also the biopsy showed I did not have celiac. But I have also been on gluten free for 6 yrs would that show up like that if it is celiac with the decreased folds but vili are ok?

I originally didn't go to the gi doctor for gluten. 6yrs ago Doctors said gluten was my problem so I stoped eating it. After I went gluten free I felt 10x better. Up until 8 months ago. For some reason (iv penned the casuse) dairy and fructose give me issues along with others I haven't figured our.... how ever the intolerant test dairy and fructose were negative, the day I did the fructose test I was so sick from the 25 grams of fructose. And still when I consume hfcs not thinking and reading ingredients I get sick. Lactose free also makes me sick . Doctors think it's my pancrease but the lipase and amylase tests came back fine....


I'm realy starting to get frustrated. Because I want a reason why when I eat even a bite of gluten I'm sick.. or when I consume dairy or fructose I have a upset stomach and diarrhea


i just dont get why i have decreased folds
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19559
Posted 11/6/2016 10:40 AM (GMT -8)
Hello & welcome to Healing Well. I did a quick google search & read on the NIH site that decreased folds is a marker for celiac. What explanation does your dr give you?

When I am looking up things on the net I am very careful where I read at, there is so so much garbage out there & its worthless.

I hope you can get some answers. Weekends tend to be slow on the forums so keep checking back. Take care.
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k.kgirl
New Member
Joined : Mar 2014
Posts : 7
Posted 11/6/2016 2:49 PM (GMT -8)
My gi doctor told me to get a accurate test I will have to eat it. when I sent her a message about my endoscopy this is what she said " Dear Kaylee,

Yes! I saw the endoscopy report and by all measures (to date) it confirms that you have Celiac. I want you to get in-touch w/ a dietitian and review gluten-free diet options for optimal nutrition and how to avoid cross contamination. This may of some importance as we work towards getting you better. It is important for you to stay in touch w/ a dietian but also your primary care physician.

See you soon!"

When I seen her we looked at the biopsy and it said negative for celiac. And she just said then that I either have it or I'm extremely intolerant but she also thinks it's weird I have decreased folds.... she emailed me few weeks ago because she talked to another doctor


This is what she said " So, I ran your case by another one of my providers and this is what we have decided. Naturally, you should stay on the gluten free diet since you feel so much better w/o the gluten, keep working w/ the dietian for nutritional needs. I want to check your pancreas using two different methods: blood work and fecal testing. Nadine, my assistant, will arrange for these tests to be done and you can make contact w/ her. Anticipate her calling you. We will check back w/ one another in a couple of weeks once the exams have been done. "

I should hear back from her this week.

Before going gluten free I had diarrhea constantly and vomiting and stomach pain.. it's hard to describe at times my intestines feel inflamed.... and I got canker sores all the time..

My health improved alot by going gf up until March this year.
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19559
Posted 11/6/2016 3:28 PM (GMT -8)
For sure have the labs & fecal testing done. If nothing gets resolved after that then you may want to consider getting a 2nd opinion.

Again, when you are up for some reading check out what NIH site says.

Take care.
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k.kgirl
New Member
Joined : Mar 2014
Posts : 7
Posted 11/6/2016 4:03 PM (GMT -8)
Labs and stuff already came back... negative
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cyclinglady
Regular Member
Joined : Aug 2015
Posts : 267
Posted 11/7/2016 7:40 PM (GMT -8)
Hi KKGirl!

I can see that you are still struggling as to the "why" your duodenum folds are decreased even though you have been gluten-free for six years. The pathology report from your recent endoscopy shows intact villi, right? Remember, the small intestine is vast (size of tennis court when stretched out flat). Patches of damaged villi can be easily missed. Not much is written about the folds which normally are associated with celiac disease, but can be attributed to things like Crohn's Disease. Maybe your doctor can order a pill camera to help rule out things like Crohn's which you can have in addition to celiac disease. My own niece was negative for celiac disease but a pill camera caught her Crohn's just at the end of her small intestine. She did not even display any of the typical Crohn's symptoms either. Back to the folds...maybe they have not healed because of your other intolerances or hidden sources of gluten. Believe me, I have been Glutened twice and have NO clue to the source. I even suspected a product that was labeled gluten-free. Maybe the villi has healed enough, but not enough for the folds. Consider the Fasano diet (dr. Fasano is a leading celiac disease GI at Harvard/MA General). Then just give it time. Takes me three months to resolve a glutening (as documented by my antibody levels). Finally, the reality is that 2/3 of adults and 20% of kids (the kids stat was just released) do not heal, but their symptoms might. Why? Probably because it is really hard to avoid gluten even for those who are really on top of the diet, but science doesn't really know. So, those folds might never improve. Focus on being gluten free. This is a really frustrating disease! Hang in there!
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