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  1. 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!!!!
  2. Okay, so I am 28. I was diagnosed with Cystic Fibrosis at 6 months old and struggled to maintain weight and stay out of the hospital all my life. At 26 I went in for a endoscopy to look at my angry pancreas and found out I had Celiacs. I went gluten-free and saw some symptom improvement and then after two years and a wicked struggle with reactive arthritis I figured out I was having the same reactions to dairy that I was gluten. I also eliminated soy at this time because it seemed to irritate me too. Now, folks with CF routinely take prescription strength pancreatic enzymes because our pancreas doesn't produce them, (pancreatic insufficiency). I felt this masked my Celiacs symptoms, possibly for years. These enzymes periodically need to be increased as a CF person ages but the main reason I'm posting this is 1.) If you have Celiacs and aren't improving even with eliminating other foods you should get tested for CF. Yes, some docs still say "Oh that's a disease usually diagnosed as a child." but the oldest person to be diagnosed with CF was in her 60's and the vitamin deficiencies and stomach issues as well as other health problems are the same for CF as they are Celiacs. 2.) Since going Gluten-Dairy-Soy free I've not had a normal BM and I was wondering if anyone had repeat endoscopies that showed healing or gave them any insight cause I'm considering that. At first after eliminating the dairy and soy I felt a little better but I was having several normal BMs a day. Now I'm either not going or going too much. If I go to my CF docs they will say it's probably my Celiacs issues because they know nothing about Celiacs and they don't really want to make it their problem because God forbid they earn the money my insurance company pays them, or they'll just go to their old stand by and raise my enzymes which could cause all sorts off issues (imagine a bunch of enzymes designed to break down food running out of food in your tummy to nom- they turn to your stomach lining and it's painful.) So If anyone has any tips or tricks here that might help me get back to regular again let me know. I've done the elimination diet and tomatoes and potatoes are thankfully my friends and fruits and veggies are nice to me as well, I avoid Quinoa and stick to rice and potatoes for my starches. Anyone tried Cultrel or something like that?
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