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Member Since 17 Jul 2013
Offline Last Active Sep 16 2013 02:23 AM

Posts I've Made

In Topic: Duodenal Intraepithelial Lymphocytosis But Negative Dq2, Dq8... Anyone Else I...

22 August 2013 - 01:45 AM

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.

In Topic: Duodenal Intraepithelial Lymphocytosis But Negative Dq2, Dq8... Anyone Else I...

15 August 2013 - 01:55 AM

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! 

In Topic: Colonscopy?

15 August 2013 - 01:45 AM

Hi! I work for gastro and I see this all the time. I used to be just like you until I made some dietary changes. I am a 35 yr old female so what i did was increase fiber, slowly over a 2 week period, and now i eat 30 grams per day. Now i have no diarrhea and no gurgling (borborygmi) and I am gluten-free and do FODMAP diet... I seem to have fructose intolerance, (wheat is high in fructans, so are onions, garlic, and artichokes. Stay away from apples, watermelon, anything with preservatives, and anything that ends with -ose) which everyone has to a degree. Google FODMAP, also check out thefartingpear.com. Also, watch your sodium intake.... I keep mine about 800-1000 mgs per day (before i didn't even realize it but i was getting about 4000 mgs per day). Sodium draws water into the colon and makes poo loose. And im talking i used to go about 10-15 times a day and it was consistency of water... and that lasted about a year. I would have flareups that would last 3 or 4 days probably once a month. I downloaded an app on my iphone called my net diary pro and you can track what you eat and how much fiber, vitamins, minerals, sodium, etc, you are getting every day. And it has every food in there (and i eat all alternative stuff like bob's red mill brands, purity farms ghee, stuff normal people don';t eat and all my stuff is in there). Cottage cheese and cheddar cheese are safe (I like boar's head cheddar or KerryGold). Plain mozzarella is safe, too. No powdered cheese mixes or cheez whiz for you though, that stuff has all kinds of crap in it. To increase fiber, buy crushed flax seed. For breakfast, i might do 1/2 cup bob's red mill steel cut quick cooking oats and 2 tbsp flax seed and that is a 13 g fiber breakfast right there. I had a colon a while back, too. It was easy. Biopsies were taken for microscopic colitis which were negative. I got the colon because i had wbcs in stool but negative for infection and i kept having all this diarrhea and weight loss (i think i just wasn't absorbing food). Prior to that i had an EGD which showed duodenal intraepithelial lymphocytosis, moreso at villous tips, and mild crypt hyperplasia. Negative H pylori and no NSAID usage. So that can be indicative of celiac, systemic autoimmune disease, crohn's, or bacterial overgrowth. So then i had labs and i do not have DQ2 or DQ8 genes so they say not celiac but since i do good gluten-free they say non-celiac gluten sensitivity (also gluten gives me folliculitis on my skin and it goes away when i stop eating gluten). Good luck!

In Topic: Need Advice! Duodenal Iels, Blepharospasm, Folliculitis....

23 July 2013 - 01:41 AM

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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