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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 iloathegluten

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  1. Some of the damage to the instestines may be visible, but a microscopic analysis of the biopsy would be necessary for a diagnosis. Did he check your blood work at all? Or is he ruling out Celiac based off symptoms alone? I would maybe ask for a blood test. Bloodwork usually isn't too expensive, so I should hope he would at least order that on request... If not Celiac Disease, your symptoms could fit many other conditions too. That's the tricky thing with GI stuff. The symptoms often overlap. Definitely keep pursuing answers if your symptoms persist. If he doesn't listen or writes it off as IBS, I would seek a different doctor if at all possible. I've found in my experience with some doctors, once he or she makes up their mind about what you have, they don't change it easily. I can totally sympathize with weight gain. One of the unfortunate things about experiencing involuntary weight gain is that many people assume you're secretely overeating or otherwise lying about your diet habits. I experienced weight gain as one of my primary symptoms a good deal of my life while eating 1,200 calories max a day, and when I started dropping weight like mad with no changes to my diet, my doctors told me they were proud of me and seemed happy I finally took an interest in getting my obesity under control. I ALWAYS had the desire, and I NEVER overate (I was in abdominal pain half the time...), so this was very insulting to me, but there is unfortunately such a stigma with excess weight that can blind even doctors to underlying issues. It's too easy for them to attribute the poor health to weight gain and not look into deeper causes. I regret not being more proactive for myself. Definitely make it clear you haven't made any changes to your diet. Even keep a food diary log to prove it if you can. And as I said, if the doctor quits listening, find a new one. I've had to change mine a few times in order to get somewhere in finding answers for myself!
  2. I had to look up lipedema because I'd never really heard of it or considered I might have it. I always just thought it was extreme bloating, lol. But like you, I also could never wear Ugg boots or similar styles. Even at normal weights, my calves were too thick! I did also experience frequent bruising as well. I just did some quick google searches on lipedema, and one theory is it's caused by hormonal imbalances. One major cause of hormonal imbalances in women is PCOS (Polycystic Ovarian Syndrome). I was diagnosed with this in high school, and new research is finding PCOS is linked to Celiac disease and gluten intolerance. I definitely believe it is. After going gluten-free, my PCOS symptoms drastically improved - if not disappeared! Maybe there's a link through this. It seems lipedema affects only women, and PCOS also affects only women, so maybe that's the link with gluten? Even without PCOS or a similar condition, I would think gluten consumption could cause hormonal imblances that would be responsible for the lipedema... It's all very interesting to think about!
  3. Before I went gluten free, my feet and calves were always swollen!! My pant size was a regular size, but I had to buy boots that would fit a plus size calf, and even then, they were a tight fit! I thought I was just doomed to have cankles my entire life, but going gluten free solved the problem. My shoe size also shrunk. SO crazy how one little protein can affect so much. The bloating in my gut and face went down noticeably within a month after going gluten-free, but it took about a half a year before all the swelling in my feet and calves disappeared. It helped me to stay active and also to limit alcohol and salt consumption.
  4. I don't worry about it too much.White rice is one of the few foods I'll tolerate right away after any GI distress. I can't eat brown rice. It sits in my stomach like lead, makes me feel like crap, and eventually gives me diarrhea on the way out, so I avoid that. I'm fairly certain it's not related to the arsenic in it though. I read somewhere about the high levels of phytic acid in brown rice make it harder to tolerate, and white rice has never caused me trouble.
  5. This is so crazy. I just had the same exact thing happen to me. Got glutened three months ago and I have NOT felt the same since. It started with physical symptoms, but then it went into mental with panic attacks and depression. It's been more of a constant all the time thing and not confined to periods this time, but it's really crazy what gluten will do to your hormone levels. I was DX with PCOS (Polycystic Ovarian Syndrome) when I was in high school, and I always had the absolute worst PMS. I was treated with birth control, but honestly the only thing that every really knocked it out was not eating gluten. My PCOS all but disappeared after I stopped eating gluten, and I will get bad PMS and period symptoms if I've been glutened. I've read somewhere there is a high occurence of Celiac patients with PCOS. Maybe this is the culprit? Also, following this latest gluten incident, I developed Small Bowel Bacterial Overgrowth, which is also linked to depression. If you're still getting physical symptoms, this seems like it could be a likely explanation. Maybe either of these two conditions is causing it? I'm not a doctor by any means, but I thought i'd share my experience with it. Good luck to you! I know what it's like to go from feeling fine to competely derailing when your time of the month comes around. It's so overwhelming when it hits!
  6. What Do You Say?

    In general I really hate arguments like these. I feel it's counterproductive to make anyone feel like their suffering isn't real, and this is EXACTLY what comments like this achieve. If someone fractures their leg and another snaps theirs completely in half, it doesn't mean the person who fractured their leg experienced no pain. One may be more serious, but you shouldn't tell the other person their suffering isn't real. I think it really depends on how people say comments as such. A little positivity is a good thing to have, but for many of us, it stings because this is a very real, sometimes debilitating condition we live with. Most of the time we don't complain about it, but it still grates on it. Most people probably don't want to hear about what the nitty gritty details of our poop anyway, LOL. So, we usually don't whine about it!
  7. Amy's Mexican Casserole

    Wow! I'm so glad I'm not the only one who has issues with Amy's... Their meals are tasty unfortunately, so I second-guessed myself a few times before I admitted to myself it was glutenings. Wish they'd do their gluten free meals in a gluten free facility.
  8. Butter?

    Possibly the fat content? I personally have issues with dairy fat in addition to lactose, so maybe the culprit was that? I tolerate any dairy that's low lactose, low fat with no issues at all, so I assume I'm a-okay with casein, but cream, butter, ice cream, etc. give me horrible abdominal craps to the point it does feel like I've been glutened. I always have issues with any high fat meals, but dairy fat seems to be an even worse offender than other sources of fat for whatever reason... I swear I'm dairy fat intolerant to the level people are casein intolerant. Sorry to butt in. It seems like you've already figured out the problem, but I thought I'd offer one more suggestion in case you were still wondering!
  9. Mind Blown Help?

    I too can relate to looking pregnant. Before my worst symptoms hit, I always had a flat stomach and stored my excess weight in my butt and thighs, but when I suspect Celiac disease had come on full force, my stomach was always bloated and I actually lost weight, but my dang tummy just wouldn't unbloat itself! I also can relate to chronic fatigue and needing to admit you need help. I'm going through the same thing this year. I've missed so much class this semester, it's going to be very, very hard to salvage my grades by finals. Try not to get too down and whatever you do, don't let others get you down. Don't listen to any accusations that you're not truly sick or just being lazy. Chronic illness is very real and debilitating for the sufferer. It especially sucks when you have GI issues because it's embarassing to tell your prof or employer why you missed. I remember missing a class and a half once because I spent an hour in a campus bathroom desperately trying to get ahold of the nausea and diarrhea so I wouldn't miss the rest of the day. And there were many days I spent on the couch not attending class or working period! Sometimes you want to be productive, but your body wages an all out assault on your ability to accomplish anything... It can and will get better though. Best of luck to you. I hope you get a proper diagnosis and start the road to healing soon!
  10. Definitely possible! Worth looking into for sure. Your symptoms sound similar to a lot of mine. Other GI conditions I can think of that might fit your symptoms would be: --small bowel bacterial overgrowth - I was just diagnosed with this. Even if you aren't Celiac, it can cause extreme sensitivity to gluten, and most people with it do better gluten free. --gallstones/gallbladder issues --IBD - Crohn's or Ulcerative Colitis can cause many of the same symptoms Celiac does. --the dreaded IBS diagnosis --food allergy/food sensitivity to one or more foods The tricky thing about GI symptoms is the symptoms overlap on most of the conditions out there, so you'll have to see a doctor to determine what exactly is causing your symptoms. Definitely talk to a doctor about it and if necessary be forceful about getting tested for Celiac Disease and other GI conditions, even and ESPECIALLY if the doctor doesn't want to run the tests. My symptoms were written off as IBS throughout high school and most of college. I'd hate to see this happen to someone else!
  11. Another Confused New Kid

    I'll just echo what everyone else has said that it can definitely be related. My gallbladder failed when I was 15. I was going into the doctor and even the ER once with severe abdominal pain. My doctor suspected function with my gallbladder was off and decided to run a test to see how well mine was functioning. It was working at 2%, so they went ahead and had it removed. After it was removed, I was told it was very diseased and looked like it had atrophied from constantly swelling up. I also had frequent tonsilitis as a child and several other health issues you wouldn't expect to see in someone as young as I was,so it is definitely possible most of your problems can be attributed to undiagnosed Celiac disease. I actually didn't realize how many health issues I had until I went gluten free. Kind of scary how you learn to accept all the problems as your normal even though the symptoms are awful and debilitating. About 3 or 4 months after going off it was the first time I woke up without a headache or joint pain. Best of luck to you! I know how hard it is to be diagnosed with new syndrome after syndrome and wonder when the next problem is going to hit. I sincerely hope you find a link for everything! If not gluten, something else. I agree - something definitely has to be connecting it all.
  12. I've taken digestive enzymes any time I eat out as an extra precaution, and also because meals out, even IF it's 100% gluten free, tend to be high in things people with sensitve bellies tend have issues with. I think they're occasionally useful at making eating out a more comfortable experience for me, but they didn't prevent a major glutening that still has me sick now even months later. Unfortunately it was a direct exposure to wheat and put me back to my pre gluten free days. I took four of these pills before this meal (same brand you mentioned), so I can say with certainty they did NOT work at preventing a glutening for me. I'd be interested to see how well they work for people who are only a little gluten intolerant. I have a friend who limits his beer and pasta consumption and seems to feel well enough he doesn't cut out all sources of gluten.
  13. I'm 23 now and totally know what you're getting at with people not understanding the disease or what it's like to have to be hyper vigilant about EVERYTHING that comes in contact with your mouth. My mom once saw me reading through the ingredients on an antacid bottle and snapped at me that "They wouldn't put gluten in medication that's meant to make you better!". Completely false. Gluten can be found in anything... She was frustrated with me that night and insisted the glutening I'd experienced from Applebee's was in my head. (It wasn't. The tortilla chip strips were fried in a common frier... ) She used to harp on me about overthinking things and still does occasionally. She'll often think I've simply psyched myself out when I've been glutened if the amount or source of it doesn't make sense to her. She's since gotten MUCH better. It was helpful for her to be able to see the damage it to me after a recent glutening. Rather than try to hide the bloat behind baggy clothes, I decided to wear a shirt that made it incredibly obvious I looked five months pregnant. When she commented on it, I told her something along the lines of "This is what cross contamination does. Now imagine if I ate an actual piece of bread?" She was freaked out enough by seeing how distended I looked in addition to how many times I ran to the bathroom that day to believe it was real. She did a lot of research on it and now is one of the very few people I trust to make me a meal now. My advice, which is very similar to what others have said, is to try and illustrate with really concrete examples why gluten makes you so sick. If the damage is visible on you, like a really bloated belly or a rash, maybe you could show them that (I definitely don't mean purposefully gluten yourself though!) Otherwise I've had luck asking them to remember their worst experience with the stomach flu, and then ask them imagine that illness happening every singe time they ingest something. I've seen some visual representations online that show a crumb next to a piece of bread in order to illustrate how little gluten is required to make a Celiac sick that are helpful too. Show them these as well. Most people will come around eventually. I've encountered a few really ignorant people who don't think any food allergies or intolerances exist, but they are rare. Most people simply have no clue how careful we have to be! The other thing I've done is brutal honesty. I think most Celiac sufferers have had an experience where someone well-meaning tried to make them something gluten free but ended up making them sick. The first few months I was gluten free I'd lied and tell them I felt fine so I wouldn't hurt their feelings, but I think it makes them more aware of just how serious it is if they realize that their careless prep methods caused you illness...If someone accidentally makes you sick, definitely let them know. It doesn't have to be in a rude way, but this got one of my closest friends to be a better ally about gluten. As far as kissing goes, I agree with making your boyfriend brush his teeth first. I'd probably also ask he rinse his mouth out thoroughly with water or mouthwash. Make sure the mouthwash and toothpaste is gluten free though! Hope it helps!
  14. Recurrent Nightmares And Earworms

    Yes! One of my worst pre gluten free symptoms was poor sleep due to either straight up not being able to sleep or nightmares. I almost always would wake up with the sensation I was falling even if I wasn't dreaming about it. I'd also just wake up with this feeling even if I didn't remember the nightmare, but like yours, the nightmares were always violent in nature. I also would have dreams that my friends and family were turning on me and things like that. I can't decide if it was caused by the gluten itself or caused by the SEVERE anxiety/depression I experienced prior to gluten free. When I'm glutened, one of my worst symptoms is all encompassing panic. I don't know how to describe it, but that's always the first thing I notice before the GI symptoms kick into overdrive.
  15. I've been a longtime lurker of this forum. Did a lot of Celiac research when I first found out, but I wanted to join to see how many of you have had the experience I just had... I recently had a really, really bad gluten exposure (3 months ago). Been gluten free for a year and a half and it was my first gluten poisoning that was a direct source of wheat and not just CC. Long story short a sever at a restaurant told me a meat ball was gluten free, but it actually had bread crumbs as a binding agent, which I later found out when I called the manager. I was SO SICK. CC makes me sick for about 3 days, but by a week, I usually feel better. This made me sick for months, and I'm STILL sick now.. I just never recovered. I feel as bad as I was before I stopped eating gluten. Fortunately my doctor just discovered something. I have small bowel bacterial overgrowth and learned this is likely responsible for my very slowed recovery from this incident... Does anyone have experience with this? I've been started on antibiotics to help treat it and will be starting a low fodmap diet to hopefully manage my symptoms better. So glad I have a potential way to make myself feel better. (I still would really love to strangle that server though... lol)