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  1. Ok, I have to get it together. After 11 years of militant gluten free eating, not eating out or eating processed food I glutened myself. I have not eaten chocolate since I was first diagnosed and this Halloween I caved. My memory failed me on what chocolate is gluten free. I should have looked it up. I know this is because I turned 50 and am feeling a bit hopeless lately. So I ate a bite size milky way, regular not dark. Then looked it up, duh. Anyway recently my new doctor asked what happens when I eat gluten and I said honestly I dont know it has been 11 years of normal blood work every 6 months and total normal villi on pill camera and colonoscopy. Well I had no symptoms at all confirming my Silent Celiac. Totally scary since I will never know when I am glutened. Back to my militant gluten free life. Just needed to confess since I am so dissapointed in myself.
  2. Harvest Moon

    Glutened after surgey

    Hi all, I'm looking for advice. I have been diagnosed a Celiac a year ago and just had a hysterectomy a few days ago. Day 2 home from the hospital I was glutened but didn't realize until day 6 and My insides are a mess. Didn't recognize my symptoms because of the narcotics. Now I'm just on ibroprofin but hard to take. My stomach is so raw and super tired. Anyone who knows the best way to heal my symptoms while regimented on ibroprofin? Is there something better to take after major surgery? Also going through caffeine whithdraw because I can't stomach coffee or tea now.
  3. Hi there, this is my first post here! I am writing it in the middle of the night because, no matter how exhausted I am, how much (dye-free) ibuprofen I take, I have the worst body aches every day can’t sleep. I’ve avoided gluten religiously for 6 years and my reactions to being “glutened”, while varied, have never been this bad. It happened 4 days ago and where my gut seems to be back to semi-normal, I’m just as sore and depressed and confused as ever. Should I try fasting? Supplements? Nothing I normally do for this is working! Help!
  4. I apologize in advance for the long post. I am extremely frustrated with my doctors. A year ago, I saw 3 different doctors for extreme bloat, yellow diarrhea, stomach and back pain. (Also had migraines, chronic fatigue, red splotchy face and brain fog, but didn’t connect them). I told all 3 doctors that I had celiac in my immediate family. Did ANY of them take blood? NO! Of course not. They all said “stop eating gluten, you probably have a sensitivity “. Me, not knowing you have to be eating gluten to be tested dutifully did so. One a-hole doctor, looking at my extremely bloated stomach said “you’re fat and you carry your weight like a man, just lose weight”. Lots of tears after that appointment! (I was also subjected to thousands of dollars of needless tests for gallbladder etc. but no blood work). Almost a year later, I had one bite of licorice before I realized the first ingredient was wheat. I thought, “I just have a sensitivity, it probably won’t affect me much “. WRONG, I blew up like a balloon, had back and stomach pain and the lovely yellow diarrhea came back. My intestines felt like they were on fire. So I go back to the original doctor and tell him about this reaction. He says “oh, you definitely have celiac disease”. WHAT?!? “Let’s run an antibody test” he says. I tell him I haven’t had a molecule of gluten for a year except for that one bite and have recently learned the test will be negative if I’m not actively eating gluten. I have crappy insurance and I have to pay for the blood work out of pocket, so what’s the point? He says “you might have antibodies, so we’re gonna go ahead and run it”. WTF! You didn’t think to run the test a year ago when I was so bloated you were flicking my stomach like a watermelon saying “something is very wrong” so I could have an accurate diagnosis? So the doctor says I have it, but I know the test will be negative. So when people ask me if I have celiac I feel like a liar no matter what I say. Not to mention all the money wasted. I am so frustrated I could cry. And to add insult to injury, I took my husband out to eat today for his birthday and despite my best efforts got glutened. *sigh*.
  5. Hey guys, I'm having an awful evening and it's not the first. I've been having unusual symptoms and hoping someone else can either give advice, sympathy or explanation. Been dx for 7 years now. Pretty severe, actually so severe they decided against a biopsy (I had to be on a drip, have a blood transfusion etc) so my celiac doesn't seem to run the usual course. It took about 4 years to feel any difference after changing my first and I'm super ocd about it so the likelihood of being contaminated is about 0.1% About 3 years ago I started having these random episodes of severe body tremor, like epilepsy without epilepsy. But it rarely happened so I waved it off. Now it happens every couple of weeks. For roughly 6/8 hours I'm bed bound by it. Along side my temp goes completely askew, bordering around low grade fever. Severe shaking. Upset stomach, loose stools. Nausea. Flushed cheeks. I can't explain how much it affects me. No one can seem to find a reason so far.
  6. GabriellaMarie

    21 and I feel 90

    About a 2 years ago, I was having trouble with shortness of breath. It went from shortness of breath to not being able to focus. I felt that there was saran wrap around my brain. Using google, I found that this was called dissociation-where the world can feel 2-dimensional, and you can even feel outside of yourself like an out of body experience. It feels like I am losing my mind! I was terrified of course and went to countless doctors. They continued to prescribe me anti-depressants. even though I insisted that I wasn't depressed, and there must be something else wrong. A cardiologist eventually found that I had POTS which is a blood flow problem essentially. There is no medication for POTS. Eventually, that feeling subsided slightly, until recently. Along with the "brain fog" (as my doctor calls it) and extreme shortness of breath, I was having diarrhea, dizziness, and all of the fun flu symptoms. I went to the ER and they thought it could be a reaction to my new birth control and ran tests for a blood clot. I had to do my own research and read that my symptoms aligned with Celiac disease. I was tested and sure enough, I am celiac. Now here is my problem. I have been following the gluten-free diet, as well as my vegan diet I have already been following with lots of fruits and vegetables. I am also not B12 or Vitamin D deficient as many with cognitive issues on celiac forums report to be. (In fact, my doctor said I have way too much B12 haha.) I am concerned that this feeling will never go away. It feels like 2 years since I have been myself, and I was really hoping celiac was the answer. I am still very sad about the diagnosis: my diet being very limited. (A Cuban without Cuban bread is blasphemy.) I just want gluten-free to feel worth it. I want to feel a change. Has anyone else dealt with ongoing problems within weeks of going gluten-free? My doctor made it seem that I would have immediate results, and that is just not the case with me. I can't take this disconnected feeling. I am graduating college in a week, and feel that I won't be able to be successful in this state. :/
  7. I made this account to ask this question and i dont know if this is the right place but please help Someone I know was diagnosed about 1 year ago and she’s getting worse I think. Everything she eats she vomits whether it’s glutened or not. I’m really worried!! Always feeling pukey which she says is normal but this pukey!!? she cant even take pills please please PLEASE someone help!! edit: she’s taking b12, d3, and a few others that aren’t for main things just like side affects. - sa
  8. Hi everyone, Once again I am here looking for your help. I was diagnosed with Celiac less than a year ago. It took quite a while to find out because I didn't experience any particular symptoms after eating gluten. I was always tired, had memory problems and was frequently ill; sometimes I had gastrointestinal issues, but they came and went. Last night I went out for dinner, to a Thai place I trust(ed). Later, I could hardly sleep, I had horrible nightmares, those where you can hardly tell apart when you are awake or not. I expected to have high fever but nothing! Today all my body aches, I am very tired and was nauseated all day. A little bit gasy and bloated as well.. Was I glutened?? Did I already clean my body enough that I now start to react in this fashion? If so, why does that happen? There is also gastroenteritis going around, that would be the alternative explanation. I thought I excaped it. I also didn't vomit or have diahrrea like the rest. What do you think?
  9. I got glutened at a restaurant two weeks ago - I ate half a flour tortilla. This was the first time I’ve had a sizable gluten exposure since my diagnosis a couple of years ago. The other times I’ve accidentally eaten gluten (that I know of) was in small amounts (a few baked potato chips one time; salad dressing another time) and I had no symptoms. I was fine for the first couple of days, then the symptoms I had for months before my diagnosis came back: chest tightness, stomach tightness, bloating, and my bowels are a bit off. The symptoms are not getting better; if anything, they ate getting a bit worse. I think I’m luckier than most because my symptoms aren’t that bad, but it’s still a drag to feel icky all day. How long can I expect this to last? Are my symptoms all caused by inflammation? I’ve been drinking bone broth and ginger tea, and will start taking L-glutamine. Any other suggestions?
  10. About 10 days ago I think I ate most of a wheat tortilla (the restaurant stuck to their story that it was a corn tortilla like I had ordered, but I don't believe them - I'm pretty sure it was wheat). Nothing happened in the first couple of days, then I developed intermittent chest tightness, which was one of my primary symptoms before my diagnosis, the others being bloating, food sitting like a rock in my stomach after eating, exercise intolerance, and weight loss. Anyone else get chest tightness as a symptom of being glutened? I haven't felt this symptom since I became very strict with cross-contamination.
  11. I am from Colorado where pot is legal and it's around me and the community a lot. It seems like I get glutened everytime i smoke weed though. I am wondering if dispensaries use gloves, or maybe some of their employees eat a sandwich then trim weed and it gets cross contaminated? Cause I have been really careful to quit smoking weed with ppl when people also have beer together as a combo. Or maybe I should just quit smoking with others all together? because their mouths touch the pipe and maybe they had bread that morning for breakfast or something. Has anyone found a way around this? CK
  12. i went gluten free without being tested now im getting tested so i went back to eat gluten and everything tastes weird bread, pizza, cookies everything has a really Strong taste and im actually not enjoying this at all it doesnt taste the same as before i went gluten free it tastes bad and Strong and weird it has been 2 weeks eating gluten and everytime it tastes like that :/ and also everytime i eat normal amounts of fat foods i feel nauseous i wonder why that is
  13. So I've had my first experience with being glutened after nearly 7 weeks being gluten-free (I was always constipated before, so this is new to me). I am 48 hours with diarrhea. I am concerned not only for my health, but also because I have major surgery scheduled on Thursday. Luckily I don't seem to be dehydrated, but it is all water at this point (sorry if that is TMI, I figure that is pretty typical for concersationaround here). So my question for you is: how long does diarrhea last for you if that is one on your glutened symptoms? I am told no supplements or medications, so I'm not sure there is anything I can take to hurry this along? Thanks so much!
  14. What type of gluten does Chili's Chicken Enchilada soup contain? Wheat, barley, or rye? I am not sure and I accidentally ate some. This determines if I go to the hospital or not. Does anyone have an answer before I have to go?
  15. Hi, I gave up gluten five years ago and have gradually been learning how to avoid cross contamination. Five months ago I started to get gluten reactions back to back and have only twice made it through two weeks without an obvious gluten reaction. I haven't been able to tolerate gluten free bread for a couple of years and recently went grain free which I believe helps. However, I have still been getting glutened up to twice a week. For instance, from airborne gluten (driving through a wheat field that was being harvested and walking past the air vent of an industrial sized bakery) and last night I got sick from cooking in my oven which had had a pizza cooked in it by my family - a rookie error, I know. I have finally got an agreement that my family won't use the oven for gluten and won't eat bread in the house, just cereal but this last one was the straw that broke the camel's back. I am losing hope that I will get a chance to heal. I live a few doors away from a Papa John's and on the other side is a pub kitchen. I just CANNOT face eating any more because I spend all day cooking from scratch vegetables, fruit, meat (I react to beans/eggs/soy and need to do a dairy challenge) but I am CONSTANTLY ill. I am even scared today to breath outside my house because of the Papa John! I have a young baby to care for and it's sunny outside but I am too weak, tired and depressed to do anything. Is there any hope for a (potentially) super sensitive. P.S. I am not diagnosed as I didn't know about celiac or NCGS etc when I gave it up. I am working with a dietician who very much approved of the range of nutrients I was getting, understands gluten etc. She wants us to find a way to get a kind of diagnosis and I am grateful but I know that I am on my own really because I have to be able to manage my environment. Have any super sensitives managed to go for any length of time without being glutened?
  16. Help! My 12 year old has been gluten free for 5 years. However, she gets a really bad stomach ache, "sloshing" (her description), and reflux a couple of times a month. Our blood tests keep coming back "clean", no contamination. However, I suspect she is getting glutened. It seems a lot of "gluten-free" foods (cheerios!, sunmaid raisins, certain brands of almond milk). I keep a food and symptom diary but it is really hard to pinpoint what it may be sometimes. For the past week she has had terrible stomach aches and reflux. I try to keep our kitchen clean. The only "gluten" in the house is bread for my non celiac husband. We've gone through EVERY test-- negative! Questions: who else has gone through this and what did you do to get better? Do you eliminate dairy for a while after getting glutened? Is it gluten at all? She has tested negative for other food allergies and is not lactose intolerant. Anyone try "holistic" doctors? Live in US and getting NO WHERE with our conventional docs. Help!
  17. Am I the only one out here who seems to get sick from eating it?
  18. I should have known better than to believe the gluten free labeling . But I googled and didn't find any horror stories. So I gave this a try and needless to say, i got contaminated. Just wanted to warn those of you so you wouldn't make the mistake . Wish u all the best.
  19. I had been having some issues with a bad tooth and the dentist gave me a prescription for Amoxicillin. Seems like every day this week I have felt glutened in some way. Have pretty much finished the antibiotic but was wondering if anyone else has had the same reaction after taking an antibiotic. My stomach feels like it is in knots, I don't have an appetite, I don't think I have come in contact with gluten as I try to be extra careful. It is almost like my anxiety level is at a 10 and I can't focus like I could just over a week ago. Anyone have any suggestions?
  20. Last night I made some Halloween cupcakes. I used Hodgson Mill gluten free yellow cake mix and added some halloween sprinkles to the batter. The sprinkles are the Cake Mate Halloween Mix. I didn't even consider the fact that they might have gluten in them until they were already in the batter, so I got the wrapper and double and triple checked each and every ingredient. I'm 99% sure that none of the ingredients have gluten in them, and I would assume that most sprinkles are gluten free, but I'm not sure. I also noticed that the food coloring i used for the frosting says that it may contain traces of wheat.. I've only been gluten free for two or three months so I'm guess I'm not quite used to checking every label and whatnot. Well last night I woke up 2-3 times with stomach cramps and chills, and when I woke up today I felt quite nauseous. I ended up taking some pepto bismol and I feel a bit better now, though my stomach still feels a bit 'off' and I still have the chills but not as bad. I do have a fan on so that might be why.. but when I turn the fan off I'm too hot! I also start to feel a bit sick and dizzy when I stand up. My reaction is not usually so bad, but i feel like since I went gluten free when I do accidentally eat gluten now the reaction is worse. But I've never had one like this so I'm not sure if I've been 'glutened' or if I'm actually sick. Help!
  21. Nothin' to do at 3am but sit on the internet or curl on the bathroom floor, really. So here I am. Taking a break from crying and sweating after glutened by, I suspect, what got me last week too. Threw it all out etc. but am confused as to why I ate it for 3 days last week and felt like I was hit by a train, slept all day and had mild bloating and constipation but was ok. Then didn't for a few days just in case and had about half the quantity this week and am in AGONY. It's happened before, too. One bit of the wrong thing- agony. Whole pieces of something else given to me before I was in the habit of asking what was in it rather than is it gluten-free (no, guys. Rye is not...) and barely a reaction at all...? How long will this last? Should I abstain from things I was intolerant to after diagnosis for a while like dairy or would it take longer to redo that damage? I'm back to terrified now. Ow ow ow...
  22. So I'm relatively new to having celiac and being gluten free/dairy free (almost a year now), but have had a downright horrible time adjusting. 10 ER trips and a hospital stay later, I'm still having more sick days than healthy days. Anyways, I recently had my first kiss since going gluten free and I followed all of the precautions; he had last eaten gluten 4 hours earlier AND he brushed his teeth before we kissed (with gluten-free toothpaste!) Within 30 minutes, the pain started and didn't stop for the next 2.5 weeks. I was nauseous, fatigued, and had what felt like paper cuts all along my intestines and under my ribcage. I know I was not glutened from my own doing because I watch what I eat like a hawk and have severely restricted my diet so I know exactly what's going in my body. Gluten free beauty & hair products, no medication, eating only prepackaged foods and food I prepare for myself only, and haven't eaten out in almost 6 months. So there's no chance I got glutened from anything else besides the kiss. I guess what i'm asking is if it's normal to get sick for that long from a kiss under those circumstances? I know I'm more sensitive to gluten than my family members who exhibit almost NO symptoms (lucky for them!), but I haven't officially been labeled "super sensitive"
  23. Kaleab

    Ate Some.

    Hello All, I have been diagnosed with Celiac and yesterday I decided to see what a cookie would do that had wheat in it after going gluten-free for 3 months. Surprisingly, I did not really get sick. A little foggy, cramps for a couple of hours but nothing like before. Does this mean I can have gluten in small amounts?
  24. DontEatFrenchFries

    Bizarre Brain Symptoms?

    Hello Celiac Community, I've been lurking for awhile and I'd like to ask you guys since many of you have similar experiences to me. I've had celiac since I was 12 and for the past 9 years my symptoms were pretty mild and typical gastro issues with only 1 incident of pancreatitis and 1 incident of vomiting. Since I got it young, I was never that good at staying gluten free and cheated a lot.... well not anymore. My symptoms have gotten super weird. I now get a red itchy rash if I eat even the smallest amount. But most recently I ate some fries (which never gave me issues as a kid) and woke up in the middle of the night screaming in pain and disoriented and talking absolute nonsense. I don't remember anything, my BF told me about it. Has anyone else experienced anything like this? This is totally new and weird to me and I've been gluten free for a long time.... Thank you!!
  25. Hi there, first time posting on this site. Just a quick thing before I start, I had a gluten sensitivity/coeliac (haven't been tested, but I now it's bad for me at this point as I will explain) since early childhood, which screwed up my school life and damaged me mentally before I decided to simply skip on eating toast last September. Since then I have been on a gluten free diet and I haven't felt better (getting the other issues in my life sorted, so it's all good!) before in my entire life. Let's get to why I came here. Two weeks ago I ate a Rib Eye Steak at a restaurant, the first time going to a restaurant since I discovered I had a gluten sensitivity. Most of the food on the menu had gluten to some extent, cross contamination or just naturally contained it. After eating the steak, I felt pretty bad. But the symptoms went within an hour or so (it was just an unpleasant fatigue, similar to how I used to feel when eating gluten, so I knew what it was) and at that point I assumed my gluten sensitivity depended on how much gluten I eat on a daily basis. Oh...how wrong was I. The next evening, just as I went to bed, a terrible headache struck. Along with abdominal discomfort, acid reflux and flu-like symptoms, I felt like hell. This isn't something I have had at all since starting the gluten free diet, so I immediately knew what the symptoms were caused by. For the next week, the symptoms would come and go. Most of the time I wouldn't feel them all that much, then around early evening I may feel fatigue, worse brain fog and sometimes abdominal discomfort. This did sometimes happen earlier in the day. My stool quality is worse than usual, now constipated most of the time. This could be because I am experimenting with my diet though so it may be unrelated. Now two weeks later, most of the symptoms are gone. But I am still getting waves of fatigue in the early evenings. I read that sometimes the symptoms can take over two weeks to go, but I didn't think they could come and go in this manner? I would really appreciate an answer since I am fretting over this, can symptoms from gluten exposure occur in this manner? Especially if you are a few months into a gluten free diet? For further clarification, my diet hasn't changed much and the only things I ate recently that are a bit different than usual is raspberry jam and Quinoa. Only had the latter one and the Raspberry Jam after the glutening. May remove the jam for a few days to see what happens.