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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About ezgoindude

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  1. SEPT UPDATES: Wow, life has been busy! I did all 3 SIBO breath tests, they came back negative. Beta Carotine tests and B12 came back extremely high above normal?!?!??! I am NOT supplementing any vitamins this year except for vitamin d since that has shown very low several years ago when this all started. Doc word for word tells me "congrats it must be from all the spinach you eat"........ UGH The GI doc gave me a two week trial of Cipro anyways, I'd say it was a semi success as I felt ok with no reaction AND my stools no longer float to the top of the toliet. I repeat, while I was taking antibiotics my stools would sink straight to the bottom instead of floating like they usually do. I AGAIN just had to switch insurance companies as I got a new job in July and the insurance plan is better with the company, i'll be seeing the previous GI doc in a few weeks. A few weeks after my cipro treatment my stools begain to float to the top of the toliet again. I feel competely normal at this point but for occassional gas and diarrhea/loose stools IF I eat something that is a potential trigger. Last time I saw the GI in june/july they've coined the term Extreme Intestinal Dysbiosis but we have no proof of this, so I remain undiagnosed. I'm pushing for another round of antibiotics, and an ultrasound for my gallbladder/liver area. CT showed no stones last year, but I've had dull pain in the upper right quadrant now for months. As usual I appreciate any of your words of wisdom, or thoughts / rants / opinions, and I will update with my next set of lab results.
  2. MAY UPDATES: Alright, so I'm back talking with the doc I got the CT scan from last year. The doctor who just prescribed me the two weeks of steroids wants to wait three months and in between go to a hematologist? for skin testing for allergens. Yea, I'm not wasting my time on that. I have dysbiosis, IBD, SIBO, something..... hell I only eat around white meat and non starchy veggies and still sometimes get problems. Anyways.. the two week trial of steroids did not help. By day three I was having sleeping issues, my stools started to loosen up a bit and smelled even worse. My two week trial ended this past sunday. The day after I stopped however out of nowhere I had extreme urgency to use the restroom, and pretty much everything flushed out of me. It again happened this morning, I have not reintroduced any new foods and I feel fine but now a have immediate urgency and have watery diarrhea. (just want to point out todays stool was slightly more formed than right after I stopped the steroids, so i'm kind of healing???) The GI says theres always a possibility of unknown IBD but with no pain and my body absorbing beta carotene ok and having the right amount of elastase and reacting poorly to steroids he says I'm a cookie cutter example of having Small Intestinal Bacterial Overgrowth. Next week I start one of THREE breath tests, first its enulose syrup, next week I drink a soda (dr pepper for the first time in years!) and at the end of the week I drink a full glass of milk for the last test. I finally got approved for another endoscopy, that will happen the third week of June. I pushed it back further because I just got a promotion as manager at my job and it overwhelm my schedule with so many back to back tests. Hopefully I get more answers among the chaos, as always your opinions and words of wisdom have always been appreciated. I'll catch ya
  3. Afternoon folks, as an advisory I am still undiagnosed, possible eosinophillic disorder, possible food allergies, possible leaky gut, possible celiac, it just keeps going..... But anyways, I feel this is similar to all but how have you helped slow the hair thinning? I'm not balding, I still have a solid hairline, HOWEVER, its so light and thin that when its really sunny out you could see my scalp in certain areas (my hair is short, but this was never an observation) My iron, ferritin, B12, and beta carotene were all healthy/above normal so the GI says I don't have any problems absorbing food, yet I have low vitamin d and struggle with weight. Does this even make sense? Any other vitamin I should be testing for? I see my second GI on may 19th and was hoping to bring this up amongst other testing for SIBO
  4. Went to the GI, considering everything is normal and my vitamin b12, beta carotene came back more than normal he's trying to tell me severe food allergy. I finally got him to open his mind when I asked why that would give me a calprotectin result of 150, which is not crohns level but definitely a lot of inflammation last year. He has perscribed me a 90 day supply of Budesonide. He added that even though I'm struggling with weight and stools sometimes improve that unless i feel worse or lab results become abnormal he is only able to perscribe me a 90 day "trial", in which if I get a positive result we can diagnose under "intestinal permeability disorder" in which my body doesn't break down foods.... WTF just say I have an IBD or something already, making up random words... In any case fingers crossed folks, I got a quote today on the Budesonide and it would be 330 DOLLARS for the steroids, i'll call back tomorrow and pray they have a general brand or something (for your own humour, the tech said I was getting a great deal as steroids without insurance would be $985....wow)
  5. evening googles! If you dont mind I had a question about your story..... I see a few years back you were on this forum with a diagnosis of celiac. So there was also inflammation in your colon at the time of your diagnosis? Have you every taken medications to reduce inflammation? I only ask as reference to my own struggles, I've been undiagnosed for two years.... over the next few months between two different GIs they plan to throw steroids and antibiotics ( not at the same time, different times to verify their theories....) If you can tolerate sugars, I also recommend so delicious coconut products. Their coconut milk and especially various ice creams are really good, I just can't have much because it can cause D =(
  6. Thanks nvsmom! I'll have to suck it up and call it getting "well"... I'm still frustrated how I could eat something, get no reaction whatsoever, and 3 days later it comes out as foul odor, rotting wet just bleh formed blob.... yes TMI but dude, if my enzymes are good why is it not being absorbed? frustrating yes I do feel much better than when I first started this post in terms of my general well being, I've just always been a half glass empty to some?
  7. APRIL UPDATES: Been awhile my friends! Still undiagnosed but feeling much better, for reasons also unknown? I as usual am in no pain, I sleep well, and other than what I eat I for the most part feel normal again. My only complaints are my stools are formed but a long way to go before perfect (they float, sometimes pale, foul odor sometimes) and my consistent battle for weight. I feel much better but have lost a few pounds, currently weighing in at 136lbs. At one point this year I began eating a high fat high protein diet (for the most part) This is partly because I seem to have bad reactions to starch (Grains and potatoes give me similar reactions like gluten, ESPECIALLY corn.... boy oh boy). I haven't hit the exact number, but once I hit a certain amount of fat my stools would get worse and I would get a slight dull pain or ache in the upper right quadrant of my body. My current GI then thinks hes found my miracle cure and thinks my pancreas is shot.... wow. (even though CT scan last year was clean) We do a fecal fat test, fecal elastase test, and a beta carotene test. What happens cracks me up... guess my pancreas is perfect?!?!? Fecal fat test: Normal Fecal elastase test: over 500mcg/g (normal) Carotene test: 136 (almost THREE TIMES higher than normal, wow thanks spinach i guess?) I currently eat various baked/grilled meats, dark leafy greens (usually steamed, but sometimes raw salads), some squash and smoothies. Again grains, and large amounts of sugar or fat can cause problems (i can eat blueberries but not bananas? whhaaa?) I did discover that a little sodium bicarbonate a time or two a day (1/2 teaspoon) in between meals has substantially calmed my "anxiety" and calmed my guts. I will bring this up to my GI Lastly, I don't necessarily care much for a diagnosis any longer as the I'm seeing two GIs, one of which would like to do ANOTHER endoscopy to try and discover Celiac (and then what?) while the second GI thinks possible autoimmune disorder and will be perscribing me steroids. At this point I have enough energy to move foward with my life. I'm registered back into classes to finish working on my nursing degree, and would like to get back into the dating scene this summer, which was near impossible a few months ago with how I was feeling and the various dr appts taking my time. Goodnight guys
  8. I Feel Like An Anomoly

    Ugh! I wish she was still posting on this website!! I have a low level of inflammation as well, I'm frustrated to the point of taking immunosuppressants! But what if its gut flora? then do I take prednisone? Even the intro stage of SCD is frustrating because that's how I found out I can't tolerate carrots, even if cooked for hours. ANY carbs are a problem, but not raw salads? I just eat chicken for the rest of my life?!?!??! WTF I JUST WANT TO RANT SORRY =/
  9. waddup! Thank you for your honesty, it is comforting in a way your blood results were negative, I have the second highest genetic probablility of having celiac, blood results were negative the doc is redoing my endoscopy as they have fears they didn't go far enough down for my sample, as my first endoscopy was clean even though visually the doc was concerned over the texture of my guts =? Yes, even though i've been gluten and dairy free for over a year I finally pushed myself to the next level and have started a restrictive SCD like diet starting two months ago. Its rewarding but ABOSULTELY CRAZY sometimes how meticulous you have to be with a journal. My guts must be still in rough shape, I tend to quickly fall under the "loose stools" category if I'm not abosultely sure eating my safe foods. Right now they're well formed I'm trying to expand my food base... ugh. Another question if you could sir, are probiotics the only thing that you are taking? I am also taking one (sprouts probiotic quatro strain) but I've heard nothing but good things about fish oil, vitamin d, b vitamins. I had to be careful with most digestive enzymes, they tend to burn, ouch! Thanks again
  10. Sup john! I don't have too much to add in considering Im undiagnosed and probably have several unknown autoimmune conditions, but I had two questions for ya: 1) How did they find out you had celiac? was it from a combination of testing? 2) When you eat these bad foods, how do you know you can't have them? Is it neurological pains or do you get malabsorption/bathroom woes, or both?
  11. MARCH UPDATES: I'll be posting this in separate sections, as I feel i'll need my own suptopic just to vent my frustrations over the past month and a half. To summarize I pretty much spent $200 to say hi to a doctor....but back to that later.... I've been on an autoimmune paleo/scd like diet since the holidays last year with mixed results, I finally caved and again went back to basics on the SCD diet which I started Fri Feb 13th (wwwooooo creepy hah). On a positive note I have learned many new things about my unknown condition. It appears my body CANNOT HANDLE any carbohydrates. Like none. Even on the scd beginnners diet everything was going very well until I decided for the mashed cooked carrots. were talking carrots that have been cooked for hours, and those pretty much went throught me too! Big nos: All grains (dear sweet jesus I CANNOT have corn, that was worse symptoms than glutening) Carrots Plantains more than 1/2 banana even then every once and awhile Dairy Soy Gluten/wheat Vinegars Raw onion Potato/sweet potato Strawberries (maybe small amounts ok? a strawberry smoothie was too acidic... ugh) What has me currently feeling on top of the world was two things: discovering a low dose probiotic that my body seems to enjoy AND blueberries. I was always tired, cranky and SUPER thirsty, with really bad dry eyes. Around the time I started making smoothies again with spinach kale and blueberries I stumbled upon the research of a ketogenic diet associated with thirst and body odors.... which had been slowly creeping up to me. The blueberries offer I think carbs and sugars the leafy greens may not be able to provide? Another plus I discovered is my body enjoys almond butter, only in respectable amounts. Last time I had a poor reaction to them I had been depressed watching netflix going through about half a jar..... and somehow I expected to be able to digest that?!?! In any note Imma whip up a quick chicken stirfry and come back to rant about my current doctor dilemmas and what few lab results i've gotten back.
  12. sup CFS Crusader! yeah even in my case my new GI is interested for restesting into celiac/IBD/IBS panels again, but after we get our results he feels more comfortable I still go to an allergist. If I can ask how long would you know after eating a banana or pepper your voice close? Depending on how you look at this, fortunately I dont get any respiratory problems but about an hour after eating a banana raw I have something I describe as gut-burn (feels like heart burn, just slightly below that area though) and if I eat them enough it can affect the daily gas =/ meh. I get to try cooked bananas this tuesday! whoo hooo
  13. EXCITING UPDATE: My insurance kicked in, I saw a new (third) GI today, he is VERY interested to get down to at least an idea of what I have. It's funny because he didn't seem too interested until he heard my first GI doctor was in intern in the same program back when he first started. I think the competition is on! which I don't mind, it doesn't change much but comforting to my own sanity i'm sure.... anyways the new tests I'm doing this/next week: CBC with Ferr (ferritin), Retic (reticulocyte count) and TIBC (Total iron binding capacity) I was anemic as a child for a few years, this test is just an idea of any possible secondary symptoms I have (occasional numb limbs, tingling under shoulder blade, bradycardia) Giardia antigen test ( i took a parasite test last year, maybe he wants to make sure?) Fecal Lactoferrin test (verifying any further possible chronic inflammation I may have) Fecal Qualitative Fat Elastase review (VERY interested with this, its just a bummer I have to stay off my digestive enzymes for a few days to get a better result) Beta Carotene blood test - this GIs favorite fat soluable vitamin test was this, it also makes sense because I frequently have irritated/dry eyes. ANOTHER endoscopy - this will be next week, the previous doc on the first endoscopy had said "flattened mucosa was found in the duodenum, suspicious for celiac disease" that biopsy returned as normal. This new GI thinks differently, and would like several sampes to guarantee higher probability of yes or no. Fingers.....crossed.
  14. Sup everyone! yea, I relate alot with Mycasmommy. My blood tests were negative but I have the genes for it..... and the docs KNOW gluten is a no. But just a few weeks ago I tried to have corn tortillas for a couple days and BAM, its been two weeks and I'm just slowly getting over that decision (loose stools, insomnia, low energy). As I'm reading more into this many years ago celiacs were told to avoid complex carbohydrates completely, which makes more sense why SCD/GAPS have a high percentage of resolving dramatic symptoms. It can take weeks before you know a food is ok or not, and even then it can depend how much you can eat. I surely do not have the patience for these kind of diseases, its been extremely difficult for me to learn this "step at a time" mentality. But were here for ya!
  15. hhhmmm.... I'm restarting my SCD diet this week and was going to follow more of Dr. Haas's recommendations of bananas being a lower source of carbs, bananas are tough as they don't seem to make me any better, but one of my top foods id love to keep around. Anyways, maybe I'll try cooking an extra ripe one! My GI Appt is this monday, well get a better idea then