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Hi everyone... I do not have celiac disease but I have something that mimics it and I can't figure out what is causing it. I had an EGD with biopsy and it showed duodenal intraepithelial lymphocytosis, top heavy at villous tips. Other than that, just some mild gastritis and esophagitis. The duodenal IELS in that particular pattern can be indicative of latent celiac sprue (but I am negative DQ2 and DQ*, negative endomyseal, no elevated TTG IGG or TTG IGA or anything like that so no celiac), H pylori (I am negative), NSAID use (I dont use any nsaids or medications other than multivitamins), Crohn's or colitis (I am negative... I had a colonoscopy with random bxs because i had this almost year long period of extreme diarrhea... like going over 10 times a day consistency of straight water.... negative for infection, but i did have WBCs in stool.. It would happen every couple weeks where i would have 3 or 4 days of this.. but since i changed my diet no more diarrhea at all and i am totally normal). The duodenal IELS can be indicative of a systemic autoimmune process.... I did have ANA checked twice and it was negative both times. I had rheumatoid factor checked twice and only one time it was slightly elevated... so a rheum doc... he said i show no signs of RA or anything so I'm fine. The only other thing IELs can be indicative of is small bowel overgrowth or infection... that's a possibility... even though i am negative for all infections.... but i thought maybe my flora was messed up or something with all that diarrhea... but I am fine now. 

So now, I am getting strange problems not related to GI distress. For example, sometimes, the skin on the roof of my mouth will peel off. That only happens like once every couple months, but that's been happening for years now. I was having this period where I would wake up in the middle of the night and my left eyelid wouldn't open for a minute... just no feeling there. Then, I had PVCs in my heart for the first time ever in my life and they lasted about 2  months and then disappeared and ive been fine since. I would get about 6-10 PVCs a minute all day long. About 2 weeks after the PVCs stopped, I got a blepharospasm in my right lower eyelid that lasted about 2 and a half months. It would pulsate all day long non-stop and certain things would trigger it. Such as if i touched my forehead it would pulsate even more, or if i looked to the left it would pulsate more. I saw the eye doc and i have an appt with an eye specialist and they said they can shoot botox in the nerve to kill it... but just this week, miraculously and mysteriously, it almost disappeared... Funny thing is... Since i practically cut out all soy and lecithin like egg yolks the spasm is gone. I read that lecithin is choline, choline affects the basal ganglia in the brain, causing abnormal contractions in a hyperactive state to happen, such as with the PVCs and blepharospasm. SO that is just a theory I have...could just be coincidence. Oh, i forgot to mention, I have also had allergy testing and am negative for all IGE stuff i was tested for... also had the test on the arms where they check for like 40 different substances and i am negative. So then, about 6 months ago i started breaking out in these bumps that look kind of like acne, they are on my chest, top of shoulders, and upper back. They don't itch or hurt. So finally I went to dermatologist a few days ago and he said folliculitis (inflammation of hair follicle) so i said is that bacterial? And he said it can be but not always... can be caused by tons of things... so i just got some topical cleocin/clindamycin to put on it. I think it looks slightly better since i haven't been eating soy. Again, could just be a coincidence. 

Now for my family history: my sister has something like lupus but they cant figure it out, she just got put on plaquenil, she also has hashimoto thyroiditis and autoimmune gastritis so she gets perniscious anemia from that. My brother has alopecia areata (which is healed now) and dyshidrosis rash on his hands. Lately he keeps getting these bout where his whole face swells up but he doesn't want to go to the doctor (and i can't blame him... i don't go to docs anymore either because it is so frustrating to just have multiple specialists always say i don't know... thats why i didnt go to the skin doc for like 6 months). My dad, his sister, and her daughter all have multiple sclerosis. I have 2 maternal cousins with Crohn;s and one maternal autn with ulcerative colitis. My mom had hodgkin's lymphoma in her early 40s, she is fine now other than diabetes. My mom's sister and their aunt (my great aunt) had Non-Hodgkin's lymphoma. So we have lots of autoimmune disorders and lymphomas in my family. 

So, I am convinced that something I am eating in processed foods is making me react... at least, i think it causes some delayed inflammatory effect... i forgot to mention i also get ocular migraines with aura... def related to menses... but better by watching sugar levels. I exercise every day for 30 minutes and eat a healthy all natural diet.. though i do stray from time to time. I only eat a wheat product maybe once every 4 or 5 days. As of this week, I am avoiding soy to see if it helps with the folliculitis. 

Back to the duodenal IELS... i read other proteins can cause that such as soy, gluten, cow dairy, cereals and rice, tuna, and eggs. Problem is.. when u have the IELS all u get tested for is the glutne and they don't test or even mention anything about the other possible food intolerances, and I know because i work for gastroenterology. It is really frustrating. Any advice, please!!!!

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Have you tried going completely gluten free for at least a couple months? Some of us do have false negative results.

So many of your symptoms sound like some of the ones I had that I wonder if maybe you have a less common celiac associated gene.  Even just eating a little bit of gluten every few days can keep you from healing if gluten is your issue. Since all your celiac related testing is done you have nothing to lose by giving it a good strict try.

Welcome and I hope you feel better soon.

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It could be Non Celiac Gluten Intolerance, which wouldn't show up on the tests. A trial of a strict gluten-free diet if the way to find out - if you feel better gluten-free, that might be an answer. It sounds as if you have other complicated stuff going on too, so it could be a piece of the jigsaw

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thanks for the replies... Here's the deal. I did elimination dieting... first gluten-free for 1month... felt onlyslightly better. Then glutenfree and dairy free for a month... felt really good... then did a paleo/FODMAP diet... felt the best I ever felt. But still I can't pinpoint any one thing. I didn't do elimination dieting correctly. But here is what I notice... whatever I am doing now has completely cured my digestive issues. Only issues I have now are the folliculitis and these spasms... which by the way for the past 2 days has moved to just the right side area around my mouth... it stopped in my eyelid but now its my mouth. Then I felt pulsations in my right butt cheek. So Im guessing the mouth thing will stop soon and then move to a different part of my body. It's so weird. It's only the right side... My guess is a vessel or something in my brain is pushing on a nerve somewhere that's affecting just the right side of my body. The other thing that's weird... whenever I eat a high carb/sugar meal... I kind of feel like my brain is warped and i can't think all that good.. and I have difficulty moving my mouth to speak. I've had that problem since being a kid. It only lasts for about 1-2 hours after eating and then im normal again. What I am doing now is almost paleo... and FODMAP for the most part with minimal grains. NO soy. Increased fiber (i eat 25-35 grams of fiber per day). Sodium, i average about 800 mg per day. The thing is is that I dont think it's the gluten... i just think it's any type food high in fructans or sugars or starches. I think they make my veins dilate and they push on my nerves and cause problems. So by watching sugar levels and exercising.. i think my veins are more controlled and i get less spasms. Really, I just wish i could get a straight answer but I doubt I ever will but whatever I am doing now has me on the right path. I have been told I am non-celiac gluten intolerant but I don't believe it... because it is not a definitive diagnosis. I had my secretory IgA in my stool checked and it was in range but high in the 95th percentile which means the B cells are reacting to something they percieve as an antigen... so they said I am probably reacting to gluten. I just don't believe it. How do u know it's gluten and not some other protein? Whatever the problem it is not something that is going to kill me. It's just something that makes life a little difficult. That's why I stay strong, eat right, and exercise, and keep a fighting attitude that it won't get me down. Now, my daughter has digestive problems. She has premature adrenarche and is very tiny, like in the 10th percentile for her age group. She suffers from constipation and occasional blood in stool. I took her to GI pediatrician. They ordered a bunch of labs... all negative. I have a followup wiht them soon. Weird thing is .... with the premature adrenarche... it;s becuase she developed pubic hair at age 7 and it started when i switched her from regular milk to soy milk. I don't know if that's a coincidence or not, though. I read soy has a lot of phytoestrogens and should be avoided. She no longer drinks soy... i stopped that months ago. I give my daughter miralax every day. That helped but she still gets stomach pains time to time. Blood work negative celiac, negative thyroid, negative for vitamin deficiencies including zinc and D, normal liver enzymes, normal CBC. I notice if she eats a lot of processed food or food high in sugar she gets this pale look with dark circles under her eyes. She often complains of body pains, leg pains, and pains right around her bellybutton area. So it is a mystery with us.

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My mother-in-law has fructose malabsorption, which caused a lot of problems for her.  She can't eat fruit, HFCS, onion, tomatoes, and many other foods containing high amounts of fructose.  Something to consider.....or the more severe fructose intolerance.  I read that sugary things bother you.  Could be a possibility.  I am going through a lot of similar things.  Please let me know if you find anything.  I have had a lot of abdominal pain that moves around.  My gastro thinks that it may be an additional food intolerance to gluten and lactose or a bacterial imbalance.  I do not have any of the major symptoms of IBD, so we are keeping any eye on it, but otherwise ruling it out.  I have had chronic GERD and gastritis for well over a year.  I took acid reducers for 6 months and they really didn't do much.  I am planning on going on an elimination diet in a couple of weeks to see if I can find any answers (I am in the middle of moving).  For now, I am trying to rebalance my gut flora.  Good luck!

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Interesting.  Dont know if this will help in any way.

 

My daughter has been diagnosed with "probable" Celiac at 16 months old, Eosinophilic Esophagitus at the age of 6, and now early onset of puberty at the age of 10.  Her current testing is for skeletal bone age to determine her growth potential.  So I was doing some poking around on-line for possible reasons for the premature skeletal aging.  I ran accross Tropical Sprue which has a symptom of mouth sores and connection to Celiac/ Celiac symptoms.

 

keep working with a gastroenterologist specialist and possibly keep a food journal as food sensitivities are a common link for these symptoms.

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Eye twitches have been linked to a vitamin deficiency, though I forget which one. Abdominal pain too. But if you do have vitamin deficiencies, I'd still look for answers as to why you got them in the first place and it sounds as if you've already figured out that something in your diet is a problem.

Though I can't seem to ever keep up with it myself, have you tried keeping a food diary?

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