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Posts posted by livelaughlove3885

  1. HI All, I'm really happy because i think i finally figured out my problem, after experimenting with foods for over a year.... the problem is SUGAR! I don't think i have the enzyme to break down sugar or simple carbs or something. Here is my story, maybe others can relate and it will help you. April 2012 get EGD, the finding is duodenal intraepithelial lymphocytosis, mild crypt hyperplasia, negative H pylori, negative NSAID usage, oh, and also the IELs were all along the tip of the villi (common pattern in celiac...it means your body is fighting something it perceives as an enemy, so it floods the are with leukocytes to kill it...only problem is the next step is destruction of villi, then you can't absorb nutrients). So anyone with this finding...next step is celiac panel and haplotype testing. I am negative for everything, so I do not have celiac disease. So the doctor says I don't know... you must just be sensitive to it so you can eat it but just not all the time. And that was that. I work for gastroenterology, and i see this all the time. It's not common to get this pathology, but of those that have this pathology, the next step is bloodwork and that is usually always negative for celiac.. so these people are just told "I don't know". Well, that is bull crap, and I am determined to find an answer. So anyways, i tried glutenfree diet for a month and felt really good (but i wasn't eating enough B vitamins looking back and also since i didn't like glutenfree stuff i wasn't really consuming sugary foods). Then i did dairy and gluten free for 2 months at the same time (cutting out all sugars pretty much, but looking back i was not getting enough B vitamins or calcium or vit D... big mistake). Then i just did the paleo diet, where you don't eat grains... I felt awesome! (but i did not eat liver so therefore looking back i was not getting enough calcium, B vitamins, vit D, magnesium, zinc). So i felt awesome paleo, but after a few months of that I started to not feel right. Felt really uneasy or anxious or something. I developed a muscle twitch in my lower eyelid that lasted 8 weeks all day long, then that stopped and only the area around my cheek, mouth, and chin twitched for a couple more weeks, then it just moved to all over body twitching and this feeling like my cheeks were being pulled on. If i toucched my forehead the twitching increased. Also, getting pins and needles all day long in my arms and hands. It must be a vit deficiency, i thought. So i examined my diet... not enough iron, thiamin, riboflavin, calcium, vit D, magnesium, C. So i started introducing wheat into my diet again (but whole grain wheat with no HFCS and 2 slices are not more than 5g sugar per serving) and i felt better and the anxious feeling went away. Also, i started eating dairy products again. Cheddar cheese and mozzarella i was fine with. But then a drank an 8 oz glass of milk and felt nauseous, burping, nonstop gas. Another time i ate a brownie made of wheat flour and same problem. Was it the wheat or dairy? I wasn't convinced because why would sometimes i react but not all the time. So then i started examining sugar, protein, fiber contents of foods. And i made a discovery... I can eat any dairy or wheat product as long as it has not more than 5 or 6 g of sugar in it. Anything more than that (brownie has tons of sugar, and an 8 oz glass of milk is like 17g sugar), and i will get a really bad headache about a half hour after eating it, will become practicially comatose, can't stay awake, my eyes roll around, will get a bad anxiety feeling, my heart will race if i try to force myself to stay awake, i will keep nodding off with no control over it, and feel very confused and out of it. Also, the next day after eating something high in sugar, i will break out in a folliculitis looking rash on my back, chest, top of shoulders, then it goes away in a couple days by watching sugar levels again. Also, my muscle twitching has greatly decreased since i have been eating more B vitamins and calcium. So this whole time, i think the whole problem was sugar. I don't think im diabetic (if anything im on the low side), and i don't think im hypoglycemic, but i do think i must not make the enzyme to break down sugar... it just sits in my like poison causing headache, confusion, fatigue, skin rash, major gas bloating, burping, nausea. ANd i also think this because when i was glutenfree still if i ate a glutenfree food high in sugar i would get the same reaction. So this whole time, over a year, i think it was sugar-related. I feel fine and awesome by eating every 2 hours small meals with not more than 5 or 6 g sugar per serving. ANy thoughts? Im gonna tell my doc this next week when i have an appt. He will probably think im nuts. 

  2. 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.

  3. Hi All! I think I accidentally got glutened last night. I can't order out from anywhere (and should have learned my lesson by now... but when you work all day, come home and are starving... and didn't have time to food shop and prepare ahead because busy with children... sometimes you just think I need to eat... i'll take my chances). So i ordered fries from a pizza shop. I very well knew they probably had cross contamination. Well, I haven't had any gluten/wheat since about 2 weeks ago and my rash went completely away. Also, I haven't used any meds or creams because i wanted to see if it was wheat that was causing it. The creams were not working, so i stopped using them the same day i stopped eating wheat. I stopped eating wheat and the rash went away. Anyway, about an hour after i ate the fries i got so itchy. I went upstairs and looked in the mirror and hot red blotches on my face and other parts of my body. They were not raised hives or anything, just these red spots that felt hot, not hot to the touch, but to me under the skin they felt like they were burning. This morning i just woke up and I am fine. This is very frustrating for me because I do not have celiac disease, yet my small bowel ( intraepithelial lymphocytosis/mild crypt hyperplasia) was Marsh 2 and looked like celiac so they tested bloodwork and i am negative DQ2 and DQ8. Also, i never had a skin biopsy... the dermatologist just looked at me and said folliculitis (it was on my face, chest, upper back, top of shoulders. It did not look infected, just like these raised circular bumps with white fluid in them or something. They didn't bother me, i had them for about 6 months, until the end of the 6 month period they started to get itchy.). Also, I had allergy testing, and I am negative IgE for wheat. But when i remove wheat, all my problems go away. I am convinced that it is not the gluten but some other protein in wheat that gives me problems. Anyone else out there like me? Why does wheat cause inflammatory reactions (but that are not allergy or autoimmune related) in people like me? It really sucks because you can't test for it. All you can do is do an elimination diet to figure out what ails you. And no one believes you.

  4. 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! 

  5. 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!

  6. 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?

  7. 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. 

  8. 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.

  9. 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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