Jump to content
  • Join Our Community!

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

livelaughlove3885

Duodenal Intraepithelial Lymphocytosis, Negative Haplotype, Help!

Rate this topic

Recommended Posts

Hi. I am really frustrated because I am in the no man's land of pathologies. I had an EGD and biopsy of duodenum shows Duodenal Intraepithelial Lymphocytosis, especially at villus tips. Mild crypt hyperplasia. Negative H pylori. I don't use NSAIDS. So then I had bloodwork including haplotype testing and I am negative for celiac genes. So the gastro doc just said I don't know. So then I saw another doc and he said probably non-celiac gluten sensitivity but there is no way to know for sure, although I have all the symptoms of celiac disease even though I do not have celiac disease. ALso, I work for gastroenterology, and out of the 1000s of pathologies i see every week in my past 3 years of working for gastro I have only seen about maybe 10 other people with the same report as me that are negative blood testing for celiac yet they have IELs. There is hardly any research in this type of pathology. Anyone else out there like me? Here are my problems: diarrhea (can be as watery as urine and when it was bad it was 10 -15 times per day), fatigue, muscle twitches, blepharospasm and hemifacial spasm, folliculitis, joint aches and pains, anxiety, trouble thinking sometimes, heart benign PVCs or racing heart when I eat something i shouldn't, sometimes the skin on the roof of my mouth will blister and just peel off. Now, all those things are gone when i eat right, there still only there a little but they are manageable. I eat really healthy and also just starting taking calcium, magnesium, and zinc (i read if you don't get enough mag and have absorption issues you can get irregular heartbeat, blepharospasm, muscle twitches...). I have been gluten free again since 3 days ago. (Before i was eating gluten but only maybe twice a week, like once every couple days. I want to see what happens if i avoid it completely). Anyone else out there like me??? also, i had allergy testing and I am negative for everything. 

Share this post


Link to post
Share on other sites

Hi. I am really frustrated because I am in the no man's land of pathologies. I had an EGD and biopsy of duodenum shows Duodenal Intraepithelial Lymphocytosis, especially at villus tips. Mild crypt hyperplasia. Negative H pylori. I don't use NSAIDS. So then I had bloodwork including haplotype testing and I am negative for celiac genes. So the gastro doc just said I don't know. So then I saw another doc and he said probably non-celiac gluten sensitivity but there is no way to know for sure, although I have all the symptoms of celiac disease even though I do not have celiac disease. ALso, I work for gastroenterology, and out of the 1000s of pathologies i see every week in my past 3 years of working for gastro I have only seen about maybe 10 other people with the same report as me that are negative blood testing for celiac yet they have IELs. There is hardly any research in this type of pathology. Anyone else out there like me? Here are my problems: diarrhea (can be as watery as urine and when it was bad it was 10 -15 times per day), fatigue, muscle twitches, blepharospasm and hemifacial spasm, folliculitis, joint aches and pains, anxiety, trouble thinking sometimes, heart benign PVCs or racing heart when I eat something i shouldn't, sometimes the skin on the roof of my mouth will blister and just peel off. Now, all those things are gone when i eat right, there still only there a little but they are manageable. I eat really healthy and also just starting taking calcium, magnesium, and zinc (i read if you don't get enough mag and have absorption issues you can get irregular heartbeat, blepharospasm, muscle twitches...). I have been gluten free again since 3 days ago. (Before i was eating gluten but only maybe twice a week, like once every couple days. I want to see what happens if i avoid it completely). Anyone else out there like me??? also, i had allergy testing and I am negative for everything. 

I happen to be genetically at risk for celiac disease, but biopsy and antibody negative--even though I had symptoms which were consistent with celiac disease.  Also, I have a first cousin with celiac disease.  Having said all that, a gluten free diet made me feel better, but it did not reverse my weight loss.  Even probiotics helped me, but did not reverse my weight loss.  It was not until I eliminated apple juice of all things that my condition stabilized and started to reverse.  Apple juice has been reported to worsen symptoms in people with inflammatory bowel disease.  My hypothesis is that apple juice promotes proliferation of inflammatory bacteria in the gastrointestinal tract.  Interestingly, when I switched from apple to blueberry juice, my condition dramatically improved.  The bottom line here is that you need to look closely at your diet and examine whether you are consuming any foods that promote proliferation of inflammatory bacteria, and switch to foods that inhibit or do not promote growth of inflammatory bacteria (such as fresh blueberries, which contain xylitol, a sugar alcohol that helps prevent tooth decay of all things).

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.

Guest
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.


×
×
  • Create New...