Duodenal Intraepithelial Lymphocytosis But Negative Dq2, Dq8... Anyone Else In This No Man's Realm?

[livelaughlove3885]

Hi all! I've been posting all over this forum trying to figure something out. I had an EGD and my entire duodenum had a "granular" appearance. Pathology showed Duodenal Intraepithelial Lymphocytosis, top heavy at villous tips. Mild crypt hyperplasia. Negative H pylori. And no, I do not use any  NSAIDS or medicine other than vitamins. So since this pattern is indicative of celiac, i get bloodwork done. Negative for everything! So doctor says I don't know... you must have some type of intolerance to something. So I try glutenfree for a month and feel really good just for the hell of it. Then i do gluten/dairy free for another month and feel even better. Then i just went straight paleo (avoided all grains, including glutenfree grains) and felt awesome. Then, as winter started last year, I got lazy and just went back to regular eating (gluten, grains). And my symptoms that i had before going glutenfree came back tenfold. Fatigue, joint pain, severe diarrhea, increased ocular migraines... 2 in one day, eye pain, blepharospasm, hemifacial spasm, folliculitis (and i have never had acne, rarely had pimples...), tongue fissures, anxiety, confusion, trouble thinking... the list goes on and on. So then i go back to healthy eating again, but still having very small amounts of wheat maybe like 1 or 2 servings per week. I feel really good, but can't get the folliculitis to go away, and muscle twitching is still there but not all day long and constant like how it was for those couple months prior (and that sucked...the eye doc said they can shoot botox to kill the nerve if it becomes super bothersome... i say no thanks!). Anyways, as of sunday, i have gone glutenfree again, so today is day 4 gluten free. Also, i stopped using the benzyl peroxide sunday for the folliculitis because i want to see if just be eliminating gluten if it will go away (and not that its just the medicine/washes that are working... folliculitis ive had for several months now on face, chest, shoulders, upper back). Well, i feel really good. I haven't had any muscle twitches in my face today or yesterday... and, the folliculitis is almost gone! So how can this be that my small bowel biopsy looks like celiac but all bloodwork is negative for it (negative DQ2, DQ8, antiendomyseal...all immunoglobulins are normal in blood serum... but my secretory IgA in stool was in range but high in 95th percentile so the lab said I am reacting to something, probably gluten, but the gastro doc says those tests are a bunch of bull basically). Also, I had WBCs in my stool but negative for all infections, and i had a colonoscopy and that was normal (they wanted to rule out colitis since i used to have diarrhea 10-15 times a day and i had WBCs in stool). So as you know the one gastro doc says to me I don't know. I see another gastro doc that specializes in celiac and he says I am non-celiac gluten intolerant. So i say but is it gluten, cause how do you know for sure? How do you know it's not some other food protein like soy, eggs, dairy, whatever, causing the duodenal intraepithelial lymphocytosis. He says there is no way to know for sure, but since my symptoms got better doing food elimination dieting than it has to be the gluten (by the way i am fine with dairy). Now, here's the kicker, i work for a gastroenterology practice doing secretarial work. I see every pathology that comes back, that's like 100s of pathologies a week. In my 3 years of working for them, I have only seen about 10 people that had same results as me (and same symptoms). They had duodenal IELS, so then they got bloodwork done and are negative for celiac, so they are told the same thing, that it's likely not celiac so basically "I don't Know why you have increased lymph." Also, those patients do not use NSAIDS and are negative H pylori. So then they are sent on their way and are never heard from again and are eating gluten, when gluten could very well be causing their symptoms. And the other weird thing, me as well as those patients, all have family history of lymphoma in the family, and it's usually a 1st degree relative (i read lymphoma is a gluten cancer). So my question is is it possible to have celiac disease (my biopsy is Marsh 2 becuase of duodenal IELS and mild crypt hyperplasia) but be negative DQ2 and DQ8? I am wondering because the folliculitis is almost gone and i feel really good glutenfree?

[ravenwoodglass]

Have to leave for work in a minute but yes it is possible to be celiac and not have DQ2 orDQ8.

  It is possible that the skin issue you are having is actually DH, the skin form of celiac. Unfortunately many derms are unfamiliar with DH and don't know that is what they need to be looking for in a biopsy. They also don't know that the biopsy needs to be done next to not on lesions.

It doesn't matter what label they put on you. The important thing is you seem to need to be strictly gluten free. Your response to the diet is IMHO the best test there is.

 Do suggest that other 1st degree relatives also be tested. Just because you were (perhaps a false) negative on testing doesn't mean they will be. With a family history of lymphoma testing them may make a big difference in not just their quality of life but how long that life is.

[livelaughlove3885]

Have to leave for work in a minute but yes it is possible to be celiac and not have DQ2 orDQ8.

  It is possible that the skin issue you are having is actually DH, the skin form of celiac. Unfortunately many derms are unfamiliar with DH and don't know that is what they need to be looking for in a biopsy. They also don't know that the biopsy needs to be done next to not on lesions.

It doesn't matter what label they put on you. The important thing is you seem to need to be strictly gluten free. Your response to the diet is IMHO the best test there is.

 Do suggest that other 1st degree relatives also be tested. Just because you were (perhaps a false) negative on testing doesn't mean they will be. With a family history of lymphoma testing them may make a big difference in not just their quality of life but how long that life is.

Thanks! I never had a skin biopsy, i just went to derm after having this breakout for 6 months and he just looked at me and said Oh you have folliculitis. Now, my brother has dyshidrosis on his hands and he also had alopecia areata for a while on his head, and he has digestive issues, so i kind of wonder if he may have celiac or maybe he is just like me. My sister has lupus, hashimoto's, autoimmune gastritis/intrinsic factor/perniscious anemia. My daughter has premature adrenarche and digestive issues (bloodwork negative celiac and thyroid normal for my daughter). My dad, his sister, and her daughter have multiple sclerosis. An aunt with UC and 2 cousins with crohn's, all maternal side. My mom had hodgkin's lymphoma in her early 40s. Her sister and their aunt had non-hodgkin's lymphoma. So we have some crazy family hx. I kind of wonder if maybe like gluten or some other protein in wheat causes some type of inflammatory response in my family since we have all these autoimmune disorders and lymphomas... or maybe it's cause wheat is high in fructans and very inflammatory and causes some reaction that way, i have no idea, but i feel by eating right i will ward off my problems, cause i think i have a genetic predisposition for things. I have been gluten free again since sunday, so that's 5 days now and the folliculitis is practically gone, also, no facial spasms yesterday at all! 

[Scarletgrrrl]

We have a similar result from the biopsies. I recently had an endoscopy and the results were that I had increased intraepithelial lymphocytes. This is a biomarker for celiac disease but you also have to have the villous atrophy. I was diagnosed with mild duodenitis (inflammation of the small intestine consistent with gluten sensitivity). My villous/crypt ratio is 2:1 whereas the normal range is between 3:1 and 5:1. The doctor said this is not celiac. According to the marsh scale this is between stage 1 and stage 2. They only call it celiac when it is stage 3.

I haven't had the gene test. I believe this is one of 2 things (for me): either I didn't have enough gluten in my challenge or it is non-celiac gluten sensitivity.

Either way I am staying well away from gluten. My symptoms were horrible. I now have iron deficient anaemia from malabsorption issues. 

[livelaughlove3885]

thanks for the reply! This sucks doesn't it? I saw a celiac specialist gastro doc and he said non-celiac gluten sensitivity, so that means not autoimmune or allergy related... but i do react to it. Since that is the case, I feel no one believes me. It is very frustrating. I keep saying it is not in my head! If i eat wheat i get folliculitis, itchiness, red blotches, sometimes the skin on the roof of my mouth will blister and peel off and that hurts really bad, or i;ll get severe gas and stomach pain, yellow poop with mucus cause i probably don't absorb stuff, joint pain, trouble thinking, trouble speaking, all kinds of weird stuff. I stop eating wheat and it all goes away. I wish there was more education to the public about this so people would understand and not think you are mental.