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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store.

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  1. I had a celiac blood test around may 2015. I'm 20, male. AGA  -        35       range 0-20 TTG IgA -     5      range 0-20 I believe total IgA was normal. I have been gluten free, avoiding gluten best I could for about  2 weeks before this. On june 2015, did a biopsy, results said no signs of villous atrophy, doctor convinced I don't have it. Been gluten free for about a month before this, doctor only said to eat a 'normal' diet beforehand. I know that this could yield false negative results, but I don't think the amount of time is enough to hide the damage?   Had symptoms since I was 4-5 years old, very skinny , pale, constipation, diarrhea, inconsistent nausea (from eating wheat products, soy sauce), migraines, stomachaches, night terrors, sleepwalking. Symptoms were most evident till around 10 years of age. During my teens, the symptoms seemingly start to fade, rarely nauseated, random bouts of diarrhea 1-2 times a month or so.   Been gluten free for up to 8 months now, decided to start eating gluten again just to see how I would feel/ for retesting. Almost on day 2, no noticeable symptoms.  Ate gluten heavy for a month, a year before, breads, pasta 2-3 times a day, lost over 3-4 kg, started feeling overly lethargic during the day/after eating gluten. Sharp stomach pains and mild diarrhea once or twice.   I'm quite certain it's celiac, but if its not, and after reading about how non celiac gluten sensitivity might not exist,i don't really know what to think anymore. Any opinions/ similar experiences would be appreciated.  
  2. Hi, In a nutshell, encouraged by a >84% reduction in my tTg IgA level (4 weeks after treating giardia), I was wondering if celiac can reverse into latent celiac after treating Giardia? If so over what time period? I’m a male in my 30s, with no family history of Celiac and I have not experienced any major celiac related symptoms. In December 2015, I was diagnosed with Giardia (after a biopsy) and completed a course of a antibiotics Although only a month has passed since taking the antibotics, I have noticed a major change in my blood tests results.  Does it seem possible that my celiac is becoming gradually latent rather than active? Perhaps Giardia led me to become temporarily gluten sensitive? July 2015: Contracted Giardia from Asia. August 2015: Blood tests (With Giardia) , whilst on a normal gluten diet Endomysial AB IGA: Positive Gliadin IgG: Negative: 4.5 U/ml (Negative reference range <7) Gliadin IgA:  Borderline/Equivocal:  8.8 U/ml (Negative reference range <7, Equivocal: 7 - 10) t-Transglutaminase IgA:Positive: >128 U/ml (Normal reference range 0 - 10) Reticulin IgA:  Positive IGA: 3.35 g/L (Reference range 0.70-4.00) January 2016: (Post treatment for Giardia), whilst on a normal gluten diet Endomysial AB IGA:  Positive Gliadin IgG:  Negative: 5.0 U/ml (Negative reference range <7) Gliadin IgA:  Negative:  3.7 U/ml (Negative reference range <7) t-Transglutaminase IgA: Positive:  21 U/ml (Normal reference range 0 - 10) Reticulin IgA: Negative IGA: 2.89 g/L (Reference range 0.70-4.00) Background Research: "Treatment of giardiasis reverses "active" coeliac disease to "latent" coeliac disease." "An active coeliac disease status, with intestinal mucosa atrophy, may regress to a latent coeliac" "Serum anti-endomysial and anti-tTG antibody behaviour is not a permanent, life-long feature"  
  3. Hi, I'd really appreciate any advice anyone would be able to give! I've done some googling and reading up on celiac over the last few days, including on the different tests for it, but I'm still unsure when it can be ruled out as a diagnosis, so I hoped someone here might be able to give me some more expert advice! I'm in my early twenties and I've had gastro-intestinal issues for years, including a lot of the symptoms of celiac/gluten sensitivity. I saw a GP about them 2 1/2 years ago and she did some blood tests which included a test for celiac, which was negative. I don't know what the test was, or what the exact result was, because I just got told over the phone by the GP's receptionist something like I hadn't tested positive for celiac. So my GP suspected a food intolerance or allergy and sent me to a nutritionist. I tried a gluten-free diet, and my symptoms largely improved, so the nutritionist diagnosed gluten as the problem and recommended a gluten-free diet. I've mostly been better over the last 2 1/2 years, though accidentally eating something with gluten in it tends to upset my digestive system, but over the last few months I've been having GI issues again, including possibly gastritis, and also feeling really, really tired. So I was sent to a GI specialist who ran some blood tests, and is also going to do an ultrasound, endoscopy and biopsies. My diet for the last 2 1/2 years has been broadly gluten-free, although I haven't been careful to avoid low levels of gluten (I've guessed what's in things when I've eaten out, and even ignored low levels of gluten in stuff like ice-creams, sometimes just extracted obviously gluten-containing items from my food and eaten the rest of the meal, and I share a kitchen), so I've probably eaten low levels of gluten every week. All the same, I thought there was no chance I'd test positive on any of the celiac criteria on the blood tests.  My results were: tTG = 48.3; endomysial antibody = negative; IgA = normal; feratin = 15; haemoglobin = 147; MVC = 86. So the slightly weird ones were the tTG and the ferritin. I eat a largely vegetarian diet, so I guess that could explain the feratin. But the tTG? As far as I know I don't have any other autoimmune disorders (I hope!); but, in the circumstances, can my tTG result possibly indicate celiac, or does it more likely suggest something else? I've been put back on (deliberately!) eating some gluten every day for the 2 1/2 weeks leading up to my endoscopy and biopsy, and have been eating about one gluten-heavy meal a day. A week in, my digestive system feels pretty bad, and I've also got a nasty cold, but that doesn't indicate anything specific, I know. I'm wondering, if my biopsy is negative for celiac, what do I do then? Does that definitely rule it out, in my case? I'm not sure whether I'll have been eating enough gluten for long enough to make it an accurate biopsy or not.  I went into these tests thinking I was almost certainly not celiac, because of the test result three years ago. But the tTG + ferritin results have made me a bit more uncertain. I just don't want to decide incorrectly it's gluten-triggered IBS (which is what the GI specialist thought before the blood results), and then find out years down the line it is celiac and that I've done considerable damage to my body by not treating it properly earlier! Of course I'll listen very carefully to the GI specialist's advice, but I'd be grateful if any of you could advise whether there are any further tests I should ask for to rule out celiac? Thank you so much in advance!!
  4. hello Me and my family are brand new dog owners and we have had our dog Lucy for a week today, my mother and brother have celiac so we had to buy gluten free dog food to keep my brother and mother from getting sick, we've been using natural balance gluten free dog food for about a week now and yesturaday my mother informed me that on the back of the bag in the ingredients it said that it had oats in it, which is something that my mother and brother cant have because of the allergy. We are now on the look for a new food that truthfully doesn't contain and gluten or wheat inside, do you have any recommendations? thanks,Alexa
  5. I vomited BLOOD after eating at the Beverly Hills Hilton! BEWARE Celiac Sufferers! The Beverly Hills Hilton is NOT a safe, gluten free environment even though they will tell you that they are! This hotel does NOT take care when preparing meals for those afflicted with allergies or auto-immune diseases such as Celiac.  My experience at this hotel landed me in the Emergency Room at Cedars – Sinai hospital on the 1st day of our trip. It subsequently RUINED my entire trip, traumatized my 8 year old daughter, and subsequently causes me anxiety when eating out now, and it was all due to the NEGLECT of the Beverly Hills Hilton hotel staff. Staff was told to refer me to their insurance company immediately after they realized what happened and would not discuss the concerns I had about their food prep process.  The insurance company called immediately and offered me a 4 night stay at the SAME hotel and $750, to which I rejected. There was no way I was returning to the place where I went through one of the WORST EXPERIENCES OF MY LIFE. We then discussed costs for my trip (which was SUBSTANTIALLY more than $750), to which they rejected. I feel as though this concerning information needs to be shared so that others don’t end up in the same situation as myself.  Don’t let this hotel ruin your vacation or weekend away – as they did mine.  I am fearful for those with Celiac (such as myself), who could end up with gluten POISONING (as I did). Since my diagnosis 7 years ago – this is the only time I have been sick when eating out. I am meticulous about how I order and what I eat. I had witnesses that heard how I ordered and what was said. I am not at fault in this situation, the hotel is and I am concerned that they don’t take Celiac seriously and that someone else could become quite ill as well. I travel extensively for my job and this experience was due WHOLLY to the inadequate, negligent and carelessness of restaurant staff and on the lack of safe food handling procedures at this hotel.  Please save yourself a trip to the Emergency room, or worse, and go to another hotel. (As an aside, this hotel is mediocre at best. The rooms are no different than most other middle of the line hotels. It definitely isn’t high end, though it likes to pretend it is.  Service is marginal (aside from security and valet staff – they were great). You are paying for the name and location. I’ve stayed at nicer Sheratons, Crown Plazas and Radissons.)
  6. Well, here is good news!  MD Magazine recently published an article that discusses celiac disease and the possible risk for dementia.  Originally published in the Journal of Alzheimer's Disease, the article basically states that the risk for dementia does not increase before or after a celiac disease diagnosis.  Nice to read something positive!  I know it is just one study, but I'll take it!  
  7. After almost ten years without it, I now have insurance (yay!).   So, 4 years ago when I was anemic, loosing hair, exhausted and aching, and with chronic yeast infections, I had to diagnose myself.  After realizing that gluten was the culprit, I've been gluten-free for 3 years.  My hair has grown back, yeast infections are gone, skin is normal. Fatigue and anemia are MUCH, MUCH better but still ongoing; I have to get about 200% DRA of iron to stay above anemia, and daily exercise causes crushing fatigue.  I've assumed this has to do with still-poor nutrient absorption   Now that I have insurance, is there any benefit to going back on gluten and getting properly diagnosed? CAN I get properly diagnosed without going back on the gluten???   Thanks for any advice you can offer!
  8. Hi, I've posted on here before and everyone's input was definitely helpful so I thought I'd do it again.   I'm 22 and I was diagnosed with celiac via an endoscopy biopsy a year ago.  After a couple of months of going gluten free, I was feeling really great and, dare I say, pretty close to being back to "normal."  So from about January to July I was feeling well, other than once or twice when I was accidentally glutened.  However, around July this past summer, I started having stomach problems again, including cramps, diarrhea, bloating and heartburn (which I never had heartburn until I got celiac).   These symptoms are milder than when I had undiagnosed celiac, occurring 1 to 3 times a week, rather than almost every day like before.  But still, they are pretty similar symptoms.  I take immodium and bentyl pretty regularly, maybe overuse of the meds is messing me up. I got another round of labs done about 2 months ago, and everything came back normal.  Thinking it might be another food allergy, I visited an allergist and they did skin tests and did not find anything.  I am not having any histamine reactions, either, but I never really have from the get go.  Of course, the allergist said that he could not really do much testing, otherwise, as blood work would not detect anything food related.  He pretty much advised to take foods out of my diet to see how I'm feeling and try to narrow it down.   As careful as I am, I know there is a risk of cross contamination.  However, I didn't think I was THAT sensitive, as back in the winter I accidentally drank a sip of regular beer thinking it was my own, and felt fine the net day.  So I figured that a teeny tiny amount did not really affect me.  I am slightly frustrated in that I was feeling really well and out of nowhere I started slipping back again.   I have read articles that say that a celiac's stomach is never fully healed, but they always seem gimmicky and promote a really specific diet.  I am skeptical when reading things like, "gluten free diets alone don't work."  But, I can't deny that I am still having issues.   I am definitely willing to alter my diet in terms of eating more clean, but realistically I don't think I could ever go 100% clean.  I eat pretty well already but, like everyone, I enjoy junk food once in a while and love dining out once a month or so.  At this point, the next step is for me to go back to the gastro, but I wanted to see if I was maybe missing something or not thinking about something else that may be causing this.   Basically I am wondering if anyone else has experienced something similar to this and if it was due to diet, or maybe another related gastrointestinal disorder.  I am also not sure about which foods to test out removing from my diet.  I went dairy free for a while and I was still having the same issues.  Has anyone had their sensitivity increase after being gluten free for a few months?  Is there a factor I could be neglecting to take into consideration?  Any input would be greatly appreciated! Thanks.    
  9. Hi, A week ago I accidentally bought and put in my mouth a sunflower seed cacao treat at LAX airport. I put it in my mouth, chewed, looked down at the label and saw it has wheat. I spit it out and gargled, brushed my teeth, etc. And then I tried to forget about it. I felt okay for about five days. . . and then, by this past weekend, and until now I have fatigue, muscle stiffness, and some anxiety. Of course it could be a tiring life and anxious conditions in life too. Does this happen to celiacs to get a delayed reaction to a glutening or does everybody have glutening symptoms come on within 24 hours? I've been diagnosed and gluten-free for five years but this is the first time I KNOW I put gluten in my mouth. I had a lot of fatigue for two years after diagnosis but lately it's been better, now this! Thank you!!
  10. I am diagnosed Celiac and am really new to the gluten-free diet. I am confused about cross-contamination. I wanted to get opinions on Edy’s/Dryer’s ice cream (They are the same brand. They just have different names depending on where you live). I emailed Edy’s/Dryer’s and asked about gluten. They said that it’s usually only the obvious flavors that contain gluten, but sometimes it can be in other ingredients. They use shared lines and make no claims about how well they might clean them between flavors (if they do). They emailed me a list of flavors and indicated only two they felt they could claim are gluten-free: slow churned french silk and slow churned neopolatin. I do not care for those flavors. The obvious ones with gluten (cookies, etc.) had a definite for containing gluten. The majority of the flavors on the list were listed as TBD: “We currently cannot make any claims about gluten-free for this product.” The flavors I am interested in eating are the cup size version of slow churned mint chocolate chip and the cup size version of grand peanut butter cup. I did not see any ingredients in those two that looked like they might contain gluten. Would you eat the products or would you be worried about cross-contamination? I don’t know how picky I need to be about cross-contamination. Thank you.
  11. Ok so I'm a 16 year old guy who has never been diagnosed with anything bad before. In fact I've been healthy all my life. But recently I started to develop these symptoms that were bothering me and I looked up on them and they really got in to this celiac diesese . I'll list them below  •abdominal pain in the middle and upper and under the left rib cage.  •chest pains that Are brief. On the far left of my chest almost under my armpit.  •excessive gas that is really smelly. •headaches  •feeling tired all the time every other day •hunger feeling in chest almost like when someone says their stomach is growling. Thata pretty much all I can think of right now but I was wondering if I could survive if I have it by going full gluten free? I'm pretty scared  and I can't goto my doc right now (I heard they aren't useful that much in the category anyways) because my health insurance went out and doesn't get renewed until next month. Should I go ahead and start the gluten free diet? If I do wouldnt that effect the test but does that matter? I would like to discuss this with some really friendly people  I'm pretty worried also tho to  so if some people could talk to me about this it would be awesome! and greatly appreciated!!!!    
  12. Hello everyone,  I'm new to this website but I know that people have surely asked similar things on other pages but I couldn't find any forums with exactly the same thing.  I am 21 and about 2 years ago now was when I self-diagnosed myself as celiac/gluten sensitivity. Before that I had been having EXTREME stomach pains in the upper left hand side of my abdomen, that came along with vomiting most of the time and it hurt every time I ate for days after that.  I had two friends at the time with diagnosed celiac and they seemed to have had the same pains as me. I was going to do the elimination diet at the time but felt so much better after a month that I didn't try to eat gluten and haven't since. I have had the stomach pains a few times since then (3 time in 2 years, and before I was getting them at least every month or so). Each time I had these stomach pains there seems to be an explanation that included gluten. Well 4 days ago I had a reaction and I can't think of anything that I ate that could've possibly had gluten in it (I only ate at home). My question is, can people who have been through similar things give me some advice? What should I do? Should I try to go to the GI and get advice? I've been thinking that I should try to eat gluten for a day and see if I get that stomach pain?  Does that stomach pain sound familiar? I guess I also hate the idea of having to always be a nuisance, I just picture myself on my honeymoon or a nice relaxing vacation having to ask for the staff to make me something gluten free and I guess I kind of hope that I misdiagnosed myself.. Is there anyone on here/anyone who knows someone that this has happened to? 
  13. Anyone from Bulgaria?

    Hello to everyone, I was just registered and was wondering if there are people from Bulgaria (Europe) in this site? I hope this is the right part of the forum to post in or if not, would be thankful if you redirect me. Anyway, have a great day everyone
  14. Hello,   I have turned myself away from writing this post for several months now because someone may give me too much information and I will, will, have a panic attack lol. I am going to give you a brief (or maybe not so brief) description of my story, my symptoms, and my conclusion, and I sincerely hope somebody doesn't come in here telling me that I'm wrong, and I actually have something else much worse (you know the guy. He'll come in ehre saying his uncle had this and he died) which would set my anxiety off like a bomb. So please refrain lol.   One day, I had a completely normal day. So normal that I don't remember what happened during the day. All I know is it was normal. No exciting new ventures, no exciting foods ingested, no spectacular drugs taken, nothing. It was night, I was playing World of Warcraft, and I said "Alright guys, I gotta go. I have class in the morning." Logged off. Went into my bedroom, laid in the bed, and about 2-3 minutes into resting (hadn't fallen asleep yet) my lips got tingly. My face got tingly 4-5 seconds later. Then my neck. Then my whole body was tingly and numb-ish feeling. I woke my wife up and told her and said "Maybe it's because I'm just really tired. I'm just going to sleep it off."   Woke up completely normal. Thought nothing of the numbness I experienced last night. I showered, hopped in the car and drove to campus. Walked to class, sat in the classroom, and about 30-45 minutes into class (sitting, listening to lecture as normal) my lips got tingly.... My stomach dropped. I thought... Oh no. This wasn't just some random thing. This is something wrong. I walked out of class immediately, called my mom and told her about last night and what was happening now. She told me to get to the hospital immediately, "Don't mess around with numbness kid! You should have gone into the hospital the second you felt numb! A 22 year old shouldn't have those feelings!" So I went to the campus clinic and they checked me out. He basically said "I don't know why you're numb, I have no explanation for that. What I do know is that your heart is racing at 150 BPM and although I realize you're experiencing anxiety, that is a really fast heartbeat."   So I went to the ER. They basically checked me out for stroke symptoms and other deadly things, and found me to be healthy. The heartbeat was sluffed off by them as "anxiety" which I was definitely having.   I went home still numb and tingly in the face and lips. Night came, I laid down to sleep and woke up in the middle of the night with my whole entire left arm and left leg painfully numb. I shot out of bed so fast it was unbelievable. I started getting dressed and said "I'm going to the ER" and my wife, of course, came with me. I got there and they said "anxiety" again. So I scheduled to see a neuro doctor the next day. I don't really remember what happened at that appointment, but what I do remember is that he guessed it was MS. They put me on 5 days of 1,000mg steroids per day and the numbness did get better (I think). I went through the 5 days of steroids OK (not well, just OK, my body could feel how damaging those steroids were on my system) and after the 5 days they put me on the pill form to "ween" me off the steroids. I'm sure many of you know what I'm talking about here. Take 12 on day 1. Take 8 on day 2. And so on until I've weened my system off the steroids.   On day 3 I couldn't take it. I couldn't sleep. I was having immense angst, and was just going insane. I was still getting numb every night but I was OK during the day. I went to the ER again in the evening. I told them "I am being checked into the hospital, no matter what it takes." and after some pushing, they let me in. I should probably mention that up until this point, my heart had been completely forgotten about. The clinic on campus was worried about my heart, but the ER never caught on to it. So I forgot about it too. I was checked into the hospital for 7 days. They battered me with dozens of tests. to find out 2 things: Why am I numb, and why is my heart racing? My heart would be at about 100 lying down. 130 sitting up, and 150-185 standing up. They had my hooked up to a monitor for all 7 of those days and the monitor was my worst enemy. Constantly beeping telling me I'm having tachycardia!   Here's the end result. I was still getting numb throughout my hospital stay. I got off the steroids and wasn't taking any drugs anymore other than an anxiety pill called Ativan. It helped me through the tough nights of no sleep and semi-painful numbness. They checked my heart out a LOT and found it to be a perfectly shaped, perfectly functioning heart. No abnormalities whatsoever with my heart, or with the electrical pulses that run the heart. 100% ship shape. The numbness, they thought was MS. The MRIs showed them that I have 2 lesions (I think it was 2) and lesions usually go hand in hand with MS. They shoved a bunch of MS paperwork in my hand and basically said "you gotta get out" I wanted to stay longer. I felt like I was dying of anxiety and sleeplessness and my heart was so bad I thought I would have a heart attack if I had to go home and get food and go to the bathroom by myself. But they pushed me out. Throughout my 7 day stay in the hospital they gave me one good piece of advice. "MS patients usually go gluten free. It helps many of them control symptoms" So I went on a low gluten diet when I got home.   After about 6 months of being out of the hospital and on that diet I was having VERY sparse numbness. Maybe once a month I would wake up with numb-ish lips and that would be it. I decided to completely remove gluten from my diet all together and go 100% gluten free. No symptoms whatsoever. I was living a completely normal life. Working and getting back into things. My heart was still racing, but not nearly as bad. I had a holter monitor put on me and they found my heart to be functioning fine, and ranging from 39 BPM to I think 140 BPM. Fairly normal. The high side was a bit high but much better than in the hospital. Today as of writing this, my heart probably never goes past 110 at home, and when working probably peeks at about 140. I feel pretty comfortable with it and have been to a couple heart appointments, checked out again, and all was well in all of them. They basically told me "you just have a higher BPM than average. Nothing to worry about for a skinny tall young guy." So after I went completely gluten free at about the 6 month mark, as I said, I had no symptoms of numbness. I just celebrated the 1 year anniversary of my numbness attack September 30th and was completely symptom free for several months, however, just recently, I was getting it again. About 3-4 weeks ago I was getting hyper sensitive in the hands, lips, and face. I was about to melt down when it started happening because I knew the horror was returning. The anxiety, the hospital visits, I knew it was all coming back. I told my wife "check the cupboards and make CERTAIN that I'm not eating any gluten!" she checked and it just so happened that I was. I picked out a new type of pasta which is usually a gluten free brand, but they also have a gluten-containing line which I mistakenly grabbed a few when I went with shopping. I, obviously, didn't eat that pasta again and like magic, the hypersensitivity and mild tingling/numbness went away. I am now, 3-4 weeks later, again completely symptom free. After that happened I was almost certain it was celiac. I can't explain the heart thing. I really don't know and neither do the doctors, but the numbness and tingling, I am almost certain is from celiac. And we haven't even gone over the symptoms I'm experiencing yet either: Sleeplessness - when NOT on gluten I still get sleeplessness. I used to be able to sleep (before my attack) all the way through the night like a rock, but ever since the attack my sleep hasn't been quite so easy. Upset stomach - only when eating gluten - Occasionally when consuming ice cream do I get a VERY mild upset stomach. Possibly from celiac or maybe because I don't eat dairy much so my body doesn't appreciate it, otherwise my stomach is fine on a daily basis of my gluten free diet. Fat in stool - I don't really see any connection here between my diet and when the symptom occurs. Sometimes the stool is completely normal looking and sometimes there's floaty, stringy, white-ish fatty looking stuff in the water and on the stool. Sometimes I have it, other times I don't. It may have something to do with my occasional dairy consumption (because I like cheese on my pizza, and I like ice cream, etc) but not certain. I cannot gain weight - Period. I eat and eat and eat and eat and can't gain any weight. I am 6 foot 3 and weigh 145 pounds. I stuff it down my face and it just doesn't seem to stick. I need to sleep 12 hours, even when not working - I sleep. And a long time. I can do nothing, play games and do some minor house work all day, and go to sleep at midnight and wake up at noon the next day without even trying. And if I don't get enough sleep, I'm overly fatigued and can't function. I NEED my sleep. I guess at this point I can't think of much else. Ask me and I'll tell you. The main reason for making this post was to just get some opinions from people with Celiac. I have not been diagnosed and frankly, I don't want to be. Don't you have to be on a gluten-containing diet to be properly diagnosed? If you do, I'm not doing it. There's no way I'm going to purposely put gluten in my body and give myself numbness and tingling and damage my own body just so a doctor can tell me "Yes you have celiac" which is basically what I already have told myself with my own experiments. Do you think I have it?
  15. Hey everyone I am new to this forum and I have had celiac disease for almost 1 year and I feel like I am constantly sick and I never get better. I am very carefully with what I eat and I have not eaten out in months to see if that would help but I have not seen much of a change.Right now I have had nausea, abdominal pain, burning sensation, cramping a little, I am extremely fatigue and brain fog. I have been like this for almost a week and the anti nausea medicine they gave me is not helping much. I had this problem for two weeks straight about a week ago and my doctor gave me dexilant to see if it would help but it is not. This time around it is worse. I was just wondering if anybody else has had any of these problems, and if you did what was the problem and what did you do for it, I will be seeing my doctor in a few days but I just wanted to know if anybody else has had this problem to.
  16. Howdy ya'll. I'm curious and would like to gather input on when you all began experiencing celiac symptoms, and if it's a thing that we have since we're born, or does it develop later in life?
  17. Hello all, I just found this forum and I would like to introduce myself. I have recently been to the allergist due to a host of food allergies. Like, this is really not cool, I'm running out of stuff to eat! Over the course of 10 years or so, I've been to the allergist 3 times for skin testing. I've got horrible environmental spring, fall, summer, and even winter 'allergies'. Nothing has come up save for this last time: cat and dog. I can't eat beef, I break out in hives, get miserably itchy, and oh yeah, the wheezing. Yet, I'm not "officially" allergic. Dairy gives me horrendous gastrointestinal issues. Most recently, I damn near had to go to the ER again after a reaction to almonds. The list goes on. My Dx the last time around for the allergies was nonallergic rhinitis. That didn't tell me anything else, really. Since nothing really showed on this round of testing, and a lot of my reactionary symptoms center around the itching, the doc ran a liver panel. I've seen the preliminary results and my AST, ALT, and GGT are elevated. Not astronomically, but outside of the "normal" range. At this point, I'll mention that I've got an aunt with Sjögren's, and an aunt with celiac disease. I've had asthma since I was a teen, and digestive issues in the way of constipation for as long as I can remember. After a little bit of google-fu on this liver function thing, Celiac Disease cannot be ruled out at this point. I looked at the rather extensive list on the U of Chicago website for celiac symptoms, and I'll be damned if just about every single thing that's ever been wrong with me isn't on that list! I feel like I'm going crazy with this right now, as celiac disease and/or Sjögren's are my primary suspicions. My mom's sisters are the aforementioned aunts so of course, my mom thinks I'm crazy for thinking celiac disease, but I really, really don't think it's even a stretch. I think it's a very viable possibility at this point. I've naturally gravitated away from breads, pastas, etc because I'm trying to lose that last 10 or so. I haven't gone gluten-free, but hadn't really put two and two together with the malaise, fatigue, nausea until the past few days. I'll be damned, I feel like THIS COULD REALLY BE IT!!! Brain fog, bloating, headache, after eating gluten - crackers, wheat in my tofu product, bread. Oh, the stomachache too. Keep in mind, while I'm glad that my aunt has many more food options nowadays, I've been wary of the gluten-free fad thing. For people that don't actually NEED to go gluten-free, it's unnecessary and ridiculous. Now that I'm looking at this possibility, there's a chance that I may be eating some crow with gluten free fixings. Ha. While I wait to discuss this further with the doc, I'll be here, probably asking questions as I go. I'm not completely crazy for making this leap, am I?
  18. I know there are thousands of these topics out there, but I'm yet another confused and in pain patient seeking as much help and guidance as I can get from you kind folk.  My storyline is this (and I'll bullet point for ease) - 2012 living abroad in Nicaragua for last 5 years- begin feeling stomach pain, gas, severe diarrhea. Foods like broccoli, spinach, coffee, are major irritants.  - 2013 - Immigrate back to US - symptoms continue but increase in frequency - 2014 - crappy health insurance and can't get tested - 2015 April - Initial blood test = Celiac panel- my value 98 (std rng 0-19), TTG IGA- my value 74 (std rng 0-19), Gliadin Antibodies IGA - my value 9 (std rng 0-19) - 2015 Sept - Endoscopy - negative villi atrophy, Colonoscopy - without abnormality - 2015 Oct - Begin gluten free diet, 98% faithful. Diarrhea seems to lessen. Feeling of increased energy.  - 2015 Nov - Additional blood work and parasite tests ; Cryptoporidium and Giardia Antigens : Negative, TTG Ab IgA = 26 (std range = <20), Gliadin Deamidated IgG Ab = 29 (std range = <20) - 2015 Nov-Dec - attempt eating a whole wheat italian coldcut wrap for lunch to test theory. Immediate pain in stomach, and symptoms for 3 weeks.    So my questions are these:  How important is the diagnosis? Do these sound like celiac elements or simply gluten sensitivity or neither? How can the TTG have been so high without villi atrophy?  Is there something else I should test for or seek out? 
  19. Let me introduce myself. You can call me MK. I was diagnosed with Type 1 Diabetes about 6 years ago. I found the complete life change to be a major challenge, as would anyone. I admit, I never really fully was able to, leading to many health issues and many stays in the hospital with diabetic ketoacidosis. Then, to make matters even worse, about a year and a half ago, I was tested and it was confirmed that I have Celiac’s Disease. I have yet to eliminate gluten from my diet. I have made many attempts to do it, but I fall off the band wagon every time. Now to top things off. I lost my job over the summer and found myself living out of my car. I managed to find a part time job, but that barely pays for the car itself. I have to buy food on the fly, since there is nowhere to store food and nowhere to even cook it. This, as you can imagine, limits my options to the point where I don’t even know what to do. I eat anything I can, whenever it is possible. If I eat over another person’s house, I take what I can get. It is wreaking havoc on my intestines and my digestive tract. It has become a nightmare. Recently, my mother has been letting me stay on her couch, which opens up some possibilities for me to finally start getting myself straight. Although she buys a lot of bread and gluten full products, I have been talking to her about trying to work with me and buy some better options for me. That can get expensive and neither she nor I can truly afford to do it. Everything I have seen for sale that is gluten free, such as bread, pasta, etc., is way out of our very limited budget. I need to fix this, though. I need to get healthy or I am afraid I will die. Not even exaggerating. I need some support and didn’t know where else to look. I found this place and was hoping I could maybe find some help and advice. Or even just an ear (or a set of eyes?) to turn to. Thanks in advance. MK
  20. Hi everyone,  I have been feeling pretty sick now for about 5 months. Finally my boyfriend made me go see a doctor, which I did. My first doctor did a full blood panel and tested me for h pylori - panel came back normal, negative for h pylori. She then referred me to a GI doctor who ordered a full celiac blood panel. Everything came back normal except for one test - he said the max was a 5, and I scored a 6. He didn't clarify which test it was, but from research I think it's the ttg-igg test?  He then scheduled me for an endoscopy and colonoscopy. He found inflammation only in the stomach - nonerosive gastritis - and this was the only area he biopsied.  I just got a call today from the doctor who said the biopsy results were normal, and told me to just take anti-acid pills for a few months then see how I feel.  He never addressed what this meant? So do I have or not have celiac? If I don't, I have already taken anti-acid pills, I don't want to live on them forever... I'm having a hard time accepting that just anti acid pills will make me feel better .. They help with the bloating and sensitive stomach (literally can't put any pressure on my belly) but not the nausea, night fevers, and vomiting.  Can someone pls help me make sense of my doctor's vague instructions/responses to my testing?    Thank you!   
  21. Hello all,   Thank you for providing a space to chat and gain support. I am hoping to learn more before my endoscopy which is this coming Wednesday. I just received my bloodwork results. I do not have them in hand, but the gastro doctor called to inform me they were positive. He stated my celiac panel number was "163", he said he's seen higher and anything over 15 was a positive for him.  Which number is this, the tTg?  I would be relieved to finally get a firm diagnosis and start towards feeling better. I've always been health conscious and the diet does not worry me. I just want to feel better someday! I also deal with severe anxiety and am in CBT. My CBT therapist has been so helpful! So that anxiety has me jumping down rabbit holes that they will find something even worse.   Thanks again and hello.
  22. Hi Everyone, I am a newbie here as I am still trying to figure out if I have celiac disease or not!  Have had multiple issues with fatigue and joint pain for years.  Was treated for lupus but have now been told that it is not lupus.  I am now being looked at by my Rheumatologist as possibly having psoriatic arthritis.  Have had a lot of gastrointestinal issues as of late and mu regular GP ordered celiac panel.  Only test that came back positive was GLIAD (DEAMINATED) AB,IgG.  My GP said that I do not have Celiac disease but my Rheumatologist says that I do.  Can I have the disease or at least a gluten intolerance with only 1 test positive? Thanks for any information or clarification you can give me!!
  23. Hi to all. I'm new on this, and i want to share something: Male, 29 years. Right now i'm on a non-gluten diet. Feeling relatively well. Healthy. Lots of tests, all of them went normal. Before this, i was living for some time with an array of 'strange' and 'unrelated' symptoms. Strange and unrelated, because at that moment i didn't have information about the celiac thing.   So: 1) Acutte anxiety, some kind of generalized-anxiety-disorder. Panic attacks, from time to time. 2) Abdominal distension, with strange noises. Diarrhea, with mucus, 2-3 times per day, alternated with constipation, every few weeks. Lots of belching (a lot) 3) Uncomfortable and disgusting palpitations after dinner, on a daily basis. Specially after large meals with carbs. With no pain, thankfully. Just the akward sensation. 4) A little overweight. Around 11 KG. 5) Mild insomnia. 6) The most notorius: Acid reflux, pyrosis, after every meal.   All of this disappeared very quickly, after the first 10 days on the diet. The mild overweight also, after a few weeks. Thoughts on this? Anyone going trough something like this? It feels strange.  
  24. Hello! Friday afternoon I was given lab results by my endocrinologist 's office over the phone. Due to fatigue and numerous stomach problems for years (I was told IBS) and inability to lose weight I asked my endo to test me for celiac disease. I was scratching the numbers down on a post it so bear with me.... igA 80.3 igG 82.2 tissue transglutaminase igA sep AB 113.9 I was told all should be less than 20. I already have a call to my family dr.   to recommend a GI specialist. My questions are...has anyone else had numbers like this? Is it possible my hypothyroidism could be throwing off the numbers for a false positive for celiac disease? Thank you in advance for your comments!