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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. 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? 
  2. I'm new to this site but have been using a lot lately trying to solve the mystery of my illness. I've been sick for over 4 years. I've had stomach problems my whole life but 4 years ago I woke up one morning sicker than I've ever been in my life and all these years since I have not fully better. I was tested for everything the doctor could think of, I went for tests twice a week for two months. But I don't remember them ever testing me for Celiac Disease or gluten intolerance, or even mentioning it's existence. The doctor told me that the stomach problems were being caused by anxiety and he referred me to a psychiatrist. I was put on Lamictal, Remeron, and Ativan and they helped with the anxiety, but not with the stomach problems. Going back to the doctor they ran more tests which all came back negative, and they said I may have Irritable Bowel Syndrome. The symptoms I have are much more severe than any IBS sufferer I can think of. I gave up on doctors and decided to try a gluten free diet to see what would happen. It definitely changed the way I'd been feeling, but I can't tell if it's better or worse. For 4 months after going gluten free I got worse. Much worse. So I did some research on gluten free food and realized half the stuff I'd been eating wasn't gluten free. I also have lactose intolerance, so that makes things more difficult food-wise. I also realized that I needed a separate toaster and microwave and cookware, etc. to prevent cross-contamination. So I've been truly gluten free for only a month or two. But then a few weeks ago I ate some candy I assumed was gluten free but was not. I lost 20 pounds in 4 days and I was so sick I couldn't do anything but sit and watch TV. So sick I couldn't sleep for two nights straight. I've been better from that gluten poisoning for a couple weeks but every so often I get a wave of symptoms that lasts a couple of hours then goes away. The other thing I noticed when I went gluten-free is that I don't get sick immediately after eating anymore (most of the time anyway). I can eat a meal and not feel horrible afterward. The downside is that since I've gone gluten free I've woken up in the morning and started dry heaving a few times. That never happened before I went gluten-free. I also can't seem to get rid of a constant feeling of hunger that sometimes gets to the point of making me feel ill. I don't know if all these symptoms are normal, but it can't all be caused by anxiety either. No doctor can find anything wrong with me in the past 4 years. The gluten-free diet is my last hope of getting better. I'd love to hear suggestions, comments, shared experiences. Wondering if anyone with Celiac has experienced these problems. Any advice is much appreciated! Thanks!
  3. Hey everybody, so I have a friend (female, 20 years old) who has NOT been diagnosed with celiac and does not think she is allergic to wheat but is having severe tummy issues. symptoms and factors: shooting stomach pain immediately after eating anything nausea and pain for almost 40 minutes after eating unintentional weight loss (30 pounds in 1 month) high stress environment on medicine from doctor (to coat her stomach throughout the day) long term, 8 months... Whenever she eats anything, for almost 8 months now, she experiences nauseating shooting pains that go through her stomach immediately whenever she eats anything. Her doctor put her on a medicine that coats her stomach throughout the day, so she takes it every morning before she eats, and it is the only way she is currenty able to eat. Since this began she unintentionally lost 30 pounds in a month and continues to loose weight. She is in college and taking many hard classes so stress could be a factor. She has not had a scope to look at her stomach to check for ulcers because she can't afford it right now. I got her to start trying kefir and see if that helps. Does anyone have any ideas or suggestions!? It would be super appreciated, any imput is really awesome! Thank you!!!!
  4. Does anyone else have a problem with stomach cramps just from smelling wheat bread? Since my dx I have really had problems when I go to the grocery. 1st I am seriously paranoid about being glutened. The migraine, hot poker stomach and instant tired are awful. It has gotten tot he point where even walking through the bakery at the store makes my stomach sort of crampy. It goes away once I leave the area or cant smell the baked goods anymore. It has been nice on one hand. I don't crave gluten foods; however, its pretty bad going tot he grocery.   Does anyone else have this issue?
  5. Hey all, I've been diagnosed celiac for about a year, and until recently, was living fine with the gluten-free diet. About a month ago, I started noticing stomach aches after drinking breakfast shakes, and eating cheese. I found out that dairy intolerance often comes with celiac, which would have been fine as well, except around the same time I started having stomach/abdominal pain after eating almost anything. It started with gluten-free/DF homemade chili, then gluten-free chicken fried rice, and before I knew it I had to cut almost everything out of my diet. For the last 3-4 weeks I have been eating exclusively raw fruits/vegetables and poached chicken/turkey breast. Literally everything else that I've tried to reintroduce has given me abdominal pain. This includes all types of nuts, white rice, eggs, cod, salmon, peanut butter, even oven-roasted vegetables. I usually start feeling discomfort/tightness in my stomach around 30 seconds to a minute after eating any of these things. Despite eating 2 avocados and 1-2 chicken breasts a day, I'm not getting enough fat in my diet, and have lost about 15 pounds (down to around 120 lbs. as a 6', 21 year-old male). I recently spoke with my dietician who recommended that I start trying a low FODMAP elimination diet. Thankfully, most of the things I had to eliminate were things I already couldn't eat anyways. However, this limits my diet even further, and I can't even tolerate most of the things that are supposed to be okay to eat on this diet. I have noticed no improvement since starting this diet, which leads me to believe that there is something else going on. I have been taking multi-vitamins and probiotics daily for about three weeks but am currently losing hope, as none of my doctors/specialists have been able to give me a solid answer. The doctors that I have seen don't accept leaky guy as a legitimate medical condition and have sent me to a few different specialists instead, seeming generally clueless themselves. I am having a consultation for a colonoscopy soon, as well as for a cystoscopy (I apparently also have some sort of kidney/bladder blockage, maybe a stone. We're not sure if it's related to any of this yet). I have seen a naturopath and a dietician, but neither of what they've told me seem to be doing anything to solve the problem. I feel worse every day, low energy, irritability and a general feeling of tiredness are pretty much constant and it's becoming difficult to deal with school as well as other commitments. Does anyone have any insight as to what could be going on with my body, or at least some general advice on what to do in my situation? Let me know if you'd like any more information. Thanks for reading, and for any input you may have. Matt  
  6. Our power was out so we went out to eat, and they friggin boiled the gluten-free pasta in the same water as all the other pasta (nice, huh? takes serious brains!), but then literally just after eating I began getting sick in the rage of a nasty stomach flu, aparently a strain coming from Sydney. Found myself in emergency twice I couldn't stop getting sick and became dehydrated. Finally starting to feel more energy. Tummy upset, to say the least. Still afraid to eat, but will get there soon. Simple broth and apple slices to start with. GLUTEN FREE. My questions surround how much more my body was taken down as a result of my immune system being compromised when I desperately needed it most. Hypothetically, as I don't expect a definitive answer per se.
  7. I am 22 years old and was just officially diagnosed with celiac a week ago.  However, I had blood work done a month ago and my doctor thought that I had celiac based on those results.  I have been slowly changing my diet out since then, but was not allowed to completely change it until after my endoscopy and biopsy 11 days ago.  Since then, I have been 100% gluten free (other than accidentally eating salad dressing that contained gluten).  I have been feeling great since I completely changed my diet.  Until today, that is.  I have been having symptoms all day that were similar to my gluten-induced symptoms, including stomach cramping, loose stools, and having to use the bathroom multiple times throughout the day.  Another thing that I did not really experience before was bright red, what I assume to be blood, in my stools.  The trouble is, I haven't ingested any gluten.  I checked and then double checked all of the food labels from foods I've consumed over the past three days, and I haven't found anything that contains wheat.  I suppose there is the possibility that there could be some cross-contamination, but I'm not sure what it would be from.  My symptoms are pretty bad, and I don't really think trace amounts of gluten would cause this bad of a reaction.  I understand it could be something else, such as an oncoming illness, stress, or god forbid, yet another condition.  But I was just wondering if anyone else experienced anything similar shortly after changing their diet.  If these symptoms persist for more than two days or so, I of course will go to the doctor.  Thanks for any input!
  8. I am so glad I found this forum...I just discovered it tonight!  I am hoping you all can give me sound advice as to what to, here is my "story":   A few years ago (at least 3), I started to have serious skin issues. I broke out head to toe in a rash that was so itchy, I couldn't stop scratching. I went to 5 different doctors to get a diagnosis of dyshidrosis. The "rash" is primarily on my hands, and it is rare that I do not have any sores on my hands. I also tend to break out on the underside of my arms, into my armpits a bit. The other issue I seem to have is constant diarrhea. I get the bloated, gassy, cramping feeling, and at times, don't even think I'm going to make it to a toilet (sorry if this is TMI.) I went to my doctor (PCP) about this too, and he said I have Irritable Bowel Syndrome, and I can take Imodium as needed. So, I live with Imodium in my purse, and at times, don't leave my house. I even wake up with diarrhea lately! So, two weeks ago, my dad insisted that I start on a probiotic. He bought me one with 15B active cultures per tablet. Well, it hasn't helped at all. So today, he started urging me to see another doctor and not to accept the diagnosis of IBS.   What do you all think? Reflecting back, the skin issues and digestive issues seem to have started at about the same time, but the stomach has gotten worse. I don't know if I'm vitamin or mineral deficient, although I do know that my body does not absorb folic acid, so I am always deficient. OH, I must edit this to add that I am fatigued ALL THE TIME! I could never take a nap before, now I can sleep at any time of day. Not sure if that makes any difference!   Should I be okay with IBS as a diagnosis or should I press further? Please help! I don't just want to jump into going gluten free, as I have 3 kids and a husband and that would be really difficult to do.   Thanks for any advice you could give me!   Megan
  9. Hi everyone! I was wondering if maybe you beautiful people can help me? But first let me tell you my story. My problems began at the very young age of 3 months. I would hold my breath and only let go after awhile. My mom doesn't know the precise amount of time because to her it felt forever. I continued to do this for the next few months. Only be diagnosed with "She's a stubborn child, that's all. She'll be fine." Keep in mind this was 1991 and in South Texas. I went through the next few years okay, with the exception of fluctuating weight. At the age of 12 during an all star softball game I began to feel as if I would faint. Cold sweats drenched my body and I tried to wipe the dizziness away. After my at bat (which I struck out) I told my coach I could not go back in, I wasn't feeling good. My mom came over to take a look at me and saw that I was pale with color also leaving my lips. People began giving me candy and Gatorade, thinking I had low blood sugar. I began to feel somewhat better just now with a stomach ache. By the next day I was good as new. Then at 13, I began to feel a slight burning in my chest. My mom took me to the doctor and I was diagnosed with heartburn. With that appointment I also was told to see in a cup. It came back that I had a bladder infection and I needed to lay off the soda. After two weeks with minimal soda I came back for another and was given the same results. I decided I would give it up completely. I was proud of myself, I went one month without soda! I had only consumed water. I went back and same results again! I was tired, I didn't want to go back. That was that. During high school I would complain to my mom that I sometimes felt like I was in a dream.Like in a fog or a daze. Other than that I was fine. I approached college, and I began to get stomach pains. I went to the doctor and had many scans done and the next thing I knew I woke up with no gallbladder. Till this day the doctor has never explained why he took it out. The pain continued on and gradually got worse. My sophomore year of college I found another doctor who wanted to check out my blood level, see how I was doing. She called me the day after with a worried tone telling me my atlases and liaise enzymes were through the roof. Along with low b12 and D. She asked me how I was feeling and I told her besides some stomach pain,I was alright. She began to check me every 3 months getting the same results. Only a few times were the pains in my stomach so unbearable I cried, almost calling the ambulance. I decided to stretch out on my floor and focus on breathing. I fell asleep. My senior year of college my left eye began to hurt. Next thing I knew my vision began to blur, this was my first migraine. Went back to the doctor, where she told me I was under a lot of stress with graduation coming up and all. I was like, "Yeah she's right, she's the doctor." I left it at that. Meanwhile I had another check up for blood work. Again the next morning a nurse called me with the results worried cause my levels were high. By this time this call was normal for me. They would be high but no doctor could explain it. They would also tell me while my pancreatic enzymes were high, my b12 and D were getting lower, upping my dosages. Though I would stop taking them because I would get sick. This leads me up to now, same blood results high atlases and liaise and low b12 and D. But this last visit a new one occurred, low iron. I have always had cold hands and feet, yet now I feel cold all the time even when outside sometimes (and I live in TX). I hope you all can help me, please? Thank you!
  10. Hi there, I am posting on behalf of my husband.  I have some questions and need some help from you guys, please & Thank you!! I want to be detailed, but I also don't want to go on and on and on.     Husband was basically born with Ulcerative Colitis, when he was in his late 20's they decided to remove his colon and give him an intestinal pouch (weird, right? called a J-Pouch).   He had a endoscope done a couple years after the surgery and they found that his Villi were flat. They told him to eat Gluten-Free for 3 months to see if his villi would rise again, and if they did rise, the doctor said that would mean that Gluten caused the flatness, therefore my husband would have Celiac's...   He ate gluten free (he was completely miserable) and he went back for the check up and they found that his villi were still flat. Because of this, they said he had Celiacs.   My husband, being stubborn, decided that he wasn't going to eat gluten-free anymore. Just being stubborn, he told himself that this Celiac's thing isn't real and doesn't exist, though, I think he was just joking...   Anyways, my husband never had Any stomach issues or any problems what-so-ever to make him think he had Celiacs, besides the flat villi.   Do to having an internal pouch (basically, his small intestine is now his colon....) he does go to the bathroom a lot and it's usually loose stools (TMI?) but all of this is expected from his J-Pouch, he never had stomach cramping or any other Celiac's symptoms... So he kept eating gluten, and we began to forget he was even "diagnosed" as having Celiac's.   Okay - fast forward like 8 years -   It's now June 2014, and in february 2014 my husband pointed out that he has a rash on his buttocks that's extremely itchy.  We thought, well, that's gross, but let's see if it goes away. Then a couple days later, he has bumps and a rash across his eye lids. We thought, well maybe he caught something weird, so we decided to go to the doctor.    The skin doctor tells him that he has a fungal infection on his rear end, and maybe a bacterial infection in his eye, and takes  a skin culture. That comes back negative for bacteria. So, my husband takes some medicated lotions and pills and we wait it out. Though, we are never satisfied with thinking that it's a fungal rash. We go back for check ups and now the doctor says it's Eczema and gives us more medication.    Weeks pass, and the rash is changing and spreading and finally, it almost 100% clears up.   I start googling pictures and I come across DH (the gluten rash) and we think it looks a like! Then we are reminded that my husband was once thought to have Celiacs! Maybe we found out what this is after all!   We have a final check up with the doctor and my husband asks him if this rash could be related to Celiacs, and the dermatologist laughs and says no, it's not. It's Ezcema! See! the medicine I gave you made you better therefore if it was DH, it wouldn't have cleared up.   We don't know what to believe. So at the beginning of April, when we thought the rash was all gone, we see it on his eyes again, and then his neck!, and his buttocks again, the back of his knees, his ear, his neck, his elbows, EVERYWHERE. It even spread to his cheeks and his scalp. My poor baby.   I basically made him start to eat gluten-free because we couldn't afford more doctor appointments. He's been gluten-free for about 3-4 weeks now and the rash is still itchy and still not going away!   We scheduled another appointment with a different Derm hoping they'll test his for DH.   my question is... Should he start eating Gluten again before this Dr appointment next week? How soon does he need to eat it again?   Also - does having flat villi be a symptom for something other than Celiac's? Could he be misdiagnosed for Celiacs if we find out this rash isn't gluten related?   His attitude has been so deflated over these past few months, and I just want him to get better. and he wants to eat Gluten so badly. I'm just tired of these doctor visits when they aren't listening to our experiences with his stomach and skin problems.   Any help?advice? anyone go through this?
  11. I have just returned home from having an endoscopy & colonoscopy. Last month, I tested positive on the IGA bloodwork but negative on the total count. My doc said there was a bit of confusion surrounding my blood results, so he would take a biopsy today during the endoscopy.   Upon coming out of recovery, the notes the nurse read to me said that the colonoscopy was normal & the upper endoscopy was normal "other than mild irritation in the stomach. Biopsies are taken". I don't know how many biopsies he took, nor do I know if he actually took any from the intestinal area. I was, however, able to see the photos of the stomach irritation that he viewed.   My question is this: is it possible that celiac (or gluten sensitivity) might cause stomach irritation or does it only show up in the intestinal area?   I am making an appointment to see my doctor to hear the results of this stomach issue but would really like to hear from others here.   Thank you for any advice/experience that you have to share!
  12. I have 20 years of gluten symptoms, have a history of Fibromylagia and CFS. I went to a new doctor, a nurse practitioner actually. She wasn't satisfied with just a Fibro/CFS diagnosis and decided to test me for Celiac and I tested positive on a TTG-IGA antibody test. My NP diagnosed me with Celiacs without any further testing and told me if I want to live, stop eating gluten. I decided to go for another opinion and went to see a GI. I had a negative upper endoscopy and set of negative genetic blood tests. Celiac was ruled out and non-celiac gluten sensitivity was given as my new diagnosis plus Fibromylagia. I am not 100% convinced gluten is my issue... During all this testing, the GI found I had Gastritis, inflammation in my stomach and bleeding. I was put on prescription Prilosac. This was found to be caused by years of use of non-steroid anti-inflamitories. I stoped the anti-inflams and started taking the Prilosac. My stomach felt better at first, I am also 100% gluten free now. It's been about 4 weeks and I'm not better. All of the sudden, after eating certain meals, I started having symptoms again. First it's massive upper stomach pain, like a knawing pain, like someone is stabbing my upper stomach with knives. Then I get gas, burping, then a little while later it almost stimulates my constipation and I go to the bathroom. Not diareah but I go and it's loose, normally I never go. I also get a sour taste in my mouth almost every time I eat. My struggle now is trying to figure out if this stomach pain is from me being so super sensitive to gluten cross contamination (the stomach issues seem to happen every time I eat out or get takeout) or if it's from the gastritis not yet healing. The stomach pains seem to only happen at a later in the day meal like lunch or dinner, possibly the Prilosac is wearing off by the afternoon? So confused and just want to figure this out. I called my GI and he added a second dose of the Prilosac to my daily regimen. I have taken it the last three days. The first day I took the second dose, I still had the stomach issues. Yesterday and today, I had no reaction. Yesterday I ate out at a restaurant and today I got gluten free pizza take out. I was fine. I guess if I can have a week of consecutive non-reactions, I can test my stomach with gluten and then I would know. I am looking for any opinions about this and also, if you have Celiac or non-Celiac GS, when you get stomach pain, is it in your lower stomach or is it in your upper stomach? Thanks!
  13. I've had celiac for about 3 years and i have a constant unsettled stomach. When i wasnt diagnosed i was eating gluten obviously because i had no idea, i was 15 at the time but then i got diagnosed and stopped completely. For the first two weeks my stomach was really normal you know? like no stomach aches no random trips to the toilet and no i wasnt eating anything different i was eating everything gluten free nothing out of the ordinary and nothing in specific. After that two weeks my stomach just went down hill like i wasnt eating gluten anymore but i was. Now everyone tells me it takes awhile for your stomach to heal, but im a 18 year old kid and i have to plan my life on how my stomach is feeling. I could eat the same food one night and have a good stomach the next but then eat the same thing then be grounded because i'll have stomach aches and have to constantly go toilet. To put it simply sometimes i get diarrhea for no reason  at all. Everyone says maybe i'm sensitive to other foods and should keep a diary but i eat the same food and feel good then the next day if i eat the same food ill get diarrhea or something or an unsettled, uneasy stomach.  Sorry for the lengthy post, but please this is ruining my life. I dont care if i have to occasionally watch my friends eat at restaurants while drooling but when i get celiac i was under the impression that when you eat gluten free you will have regular stool and normal bowel movements..... and notice when your about to need to go toilet. This is kind of ruining my life, no doctors can help and yes i've been to dietitians. I would really much appreciate a reply because i don't know what to do.  BTW: IBS medicines don't work, i have tried celiac enzymes, no improvement.
  14. I'm new to the forum and had a few questions regarding your own personal experience with gluten sensitivity/celiac and the symptoms surrounding it.   Is it possible to have gluten sensitivity without the typical stomach symptoms such as bloating, pain, gas, vomiting, diarrhea etc...?   I've read numerous articles on gluten and the whole host of symptoms surrounding it. I'm just curious how many actually suffered from neurological issues with very minimal to no stomach issues what so ever.   Over the past 5 years I've been suffering with symptoms that no doctor can seem to put their finger on. I've had countless tests and even a celiac biopsy which came back negative.    My symptoms began with brain fog, pressure like head feeling, and visual floaters. Over the years its progress to constant neck pain, random facial tingling, mild dizziness, difficulty concentrating, memory issues, insomnia, anxiety, pounding heartbeat in my head and with all the many tests I've had done, the doctors say I'm healthy! lol   While that's great news my symptoms aren't normal and I recall a period in my life that I enjoyed life, things were great and my outlook positive. That's been quite a while since I can honestly say that but I haven't given up hope.   Many doctors brush off the likelyhood of celiac/gluten intolerance because I have no stomach issues. Sure I have mild reflux from time to time but nothing major. Could all these neurological symptoms be a direct result of gluten while my stomach remains "unharmed/untouched" by it?    Thanks for your replies!
  15. Sorry for the long post in advance...   I've been experiencing bad stomach pain for about 6 months, and other symptoms for about a year. My other symptoms include rib soreness, feverishness, nausea, fatigue/weakness, and headaches. Come to think of it, a few years ago, I had some bad bouts of stomach pain that I think was brought on by, or at least partly, by my anxiety.   I notice that the pain comes on/increases when my anxiety increases. Eating also can bring it on. I've kind of noticed that dairy (I was tested a few years ago for lactose intolerance, but results said I'm not) and gluten foods seem to upset me more, but they're in a lot of things, so perhaps not. More recently, in the past few months, the pain seems more often after eating than it ever has been. The pain usually happens mostly at nighttime.    Back in June/July, I had the worse stomach pain I've ever had. It was a tight, crampy, achey feeling. It felt like something was wrapped very tightly around my stomach/waist/ribs. I had blood when I went to the bathroom once, and it helped a little to relieve the pain when I used the bathroom, but not much. I've been having problems with normal bowel movements, both constipation and the other.    That most extreme time, it hurt to move. I felt better resting my head on my knees while I sat at the edge of the bed. It was excruciating... I went to an urgent care place the next day, it still being really bad, but slightly better. They said I could possibly have Crohn's or IBS.   It hasn't been that kind of painful again, thankfully, but I've been having more burning pain, rib pain, feverishness, tightness, chest pain, and trouble breathing. I've also had some pain on my lower sides.   I recently went to the ER because it hurt to move (I had eaten, then felt the pain on my lower sides, then stomach/rib pain, trouble breathing, dizziness, and nausea). They gave me meds to relax my muscles, took my blood, but wouldn't do an ultra sound or anything.   I also just saw my doctor. I mentioned that Celiac runs in my family. She told me a blood test is kind of pointless unless I really wanted to do it. She told me to go gluten free for 2 weeks, and if no results, then I have to see a GI. The earliest appointment is in January...   Anyway, I've been gluten free for five days, and so far, not much improvement. I thought it was working at first because I didn't have as much stomach pain, but now it's basically back to normal. After anything I eat, I feel pain. I read somewhere that some people feel way worse after eliminating it at first, and then better.    Any opinions? Thank you  
  16. I find every soap I have tried caused the same abdominal pains that I get from eating wheat. Has anyone else experienced this?  
  17. Greetings All: I wish this were a feel-good post...   I was diagnosed with classic celiac disease 3-years ago and have felt progressively worse ever since. My symptoms prior to diagnosis were mostly neuro-related. I was reasonably fatigued most days, found it exceptionally difficult to focus on anything that didn't interest me, had anxiety and a somewhat sensitive stomach. I also had silent GERD. In comparison to today, I'd take that symptom profile any day of the week!   Now, most days are marred by bad brain fog, which sometimes blows off in the mid-afternoon or just sticks around all day. This has been exceptionally debilitating. I also am experiencing a level of fatigue unlike anything I ever experienced in the past, a much more sensitive stomach and inconsistent bowl movements. Sadly, these symptoms are consistent with a pre-diagnosis...not post-diagnosis.   I am somewhat at a loss. A recent follow-up endoscopy and colonoscopy provided no answers. The results indicated that my villi are healing and there were no mentioned signs of gastritis, crohns, ibs, gerd, etc. The only anomaly that I am currently managing is a sluggish thyroid, which my endocrinologist described as early onset hashimotos. I am currently taking tirosint, which I have been on for approximately a month. I also begrudgingly take achipex (ppi) for the gerd and Adderall for attention/energy. I would say the meds have provided some relief, but I have a long way to go before I can approximate anything resembling normalcy. I'd rather not be taking any meds, none of which I took prior to the celiac diagnosis.   I have had numerous allergen tests and tested slightly positive to certain airborn allergens and a whole bunch of foods. The food test was conducted by alletess shortly after diagnosis, but my GI doc dismissed the results. I'm wondering, now 3-years later, if I should have the test done again and closely adhere to the recommended foods/rotation, etc. I never knowingly consume gluten, but do occasionally consume other common Since my malaise/pain is constant, it's been very difficult to associate symptoms with specific foods...if that's even the problem.   I'm not sure how long it takes for the full benefits of tirosint to kick-in, but I'd love it if these issues were mostly/all thyroid related. As for vitamin/mineral deficiencies, I take a daily multivitamin, plant-based enzymes with most meals and a near-daily regimen of probiotics. Recent blood tests indicated that I am extremely low in iron and also am not absorbing iron well, but because of my stomach/thyroid issues was discouraged from taking an iron supplement. I suspect that my gut still has a long way to go, is constantly inflamed for some reason and needs a buddy.   Does the above resonate with anyone? Does anyone have any suggestions? I'm all ears.   Thanks!    
  18. Hi everyone, After 22 years of living with my gluten allergy symptoms, I was finally diagnosed at 27 with a gluten allergy/intolerance. Unfortunately I have to wait a year until I can be tested for Celiac disease because I am in the process of immigrating from Canada to the UK to Ireland. Nevertheless, for now I am on a strict gluten-free diet and it has made such a difference in my every day life. For this post, I want to share some of the major symptoms of my gluten allergy as the doctor's have not been able to make a connection until now. Major Symptoms: - Constant, debilitating, stomach aches: my grandad, dad, and brother all get stomach aches, so when I used to complain of them when I was little (started when I was 5) they just wrote it off as a "sensitive" stomach and never took me to the doctors. Over time the stomaches became worse and worse and finally at 18 I went to the doctor. He told me I had an ulcer (never actually checked for anything; just guessed). After months of pills without any results, I went to a new doctor for a second opinion. Without testing (again!) this new doctor guessed I had lactose intolerance. I went off dairy, but I would still get stomach aches after eating. I went back to this doctor who basically said, "I don't know." I gave up and just dealt with it for the next 8 years. - No energy: A constant feeling of being tired. I would wake up in the morning feeling tired. After eating, I would have to take a nap because I just felt so exhausted. - Infrequent BMs: It was not unusual for me to go every 2-3 days. After going gluten-free, I have gone once and sometimes twice per day. - Allodynia (skin pain): Since around the age of 20 I developed a new symptom. I began getting what I called "skin pain" on my legs and arms. It started with small patches that would hurt for no reason for a couple minutes, into massive patches over my legs or arms that would last for days. The pain felt like someone was randomly jabbing needles into my skin. It hurt to touch - even a slight breeze would be excruciating. There was no rash or obvious physical sign. I went to the doctor for this and they said I had "Allodynia" (which means skin pain) and I had to get an MRI. They couldn't find a cause and told me it was just something I was going to have to live with. - Migraines: Since being a teenager, I would get migraines all the time. My mom would just give me a tylenol and make me go to sleep. As I've gotten older though, they have gotten worse and more frequent. Finally when I was getting them once every couple of days, I thought I should go see my doctor. This is the doctor that eventually diagnosed me with a gluten allergy. She ordered an MRI (same doctor who was treating the allodynia) and they found a cyst on the pineal gland - which is apparently quite common and according to the neurologist, has nothing to do with my migraines. I was given migraine medication. - Joint Pain: Arthritis runs in my family with almost all of my aunts and uncles and grandparents (on one side) having it. I was told by the same doctor who ordered the MRI that it was probably the beginning stages of rheumatoid arthritis. I was given an x-ray which showed no problems with my bones yet. She also did blood work which found that I had a non-specific "autoimmune disorder." - Weight Gain: Since around the age of 19 I have put on almost 50 pounds. All the doctors told me that it was my own fault and that I needed to eat less and exercise more. Totally reasonable. I began eating very healthily, having a lot of veggies, fruit, lean meats, nuts and seeds, as well as dairy and things like pasta and bread. I kept track of calories and started going to the gym. While I would see some results at first, I always plateaued and then gained it back. This has been the most frustrating symptom because of the pressures for girls to be "thin"; and with thin = being pretty. I felt like no matter what I did nothing worked. All of these symptoms were dealt with by doctors separately. Whenever I went in to talk about a specific one, I would try to tell them all my issues, but they just wanted to deal with "one at a time" not realizing they were all symptoms of one problem. Finally after 22 years, I was diagnosed with a gluten allergy after going on self-prescribed gluten-free diet, charting my symptoms, reintroducing gluten and tracking symptoms, and then giving all the information to my doctor. It sucks that the doctors didn't think of it, but I'm guessing it was because they are not used to diagnosing gluten allergies in overweight patients - usually the major symptom for doctors is being underweight. After reading numerous articles on gluten intolerance/allergies/celiac, I also put myself on vitamin supplements: vitamin d, vitamin b, and a multivitamin. As well as digestive enzymes with food, and probiotics every night before bed. So what has changed after being gluten-free for the past 13 days? Side effects: - no stomach aches since the second day - no skin pain - one migraine on June 5th (possibly a sinus infection) - very little joint pain - more energy - more frequent BM's Crappy (but probably good) side effects: - spots all over back and arms, and one on hand: I've read this is a result of gluten leaving the body. - slight weight gain of 4 pounds: this one really sucks because I'm eating only whole foods, such as chicken, veggies, tuna, almonds, and fruit; as well as some dairy and coffee. I'm hoping this is a temporary weight gain because my body is healing and starting to get better at absorbing nutrients. But I am using myfitnesspal to track calories, so I don't go overeat. Hopefully my experiences can help those of you who are suffering from a variety of seemingly unconnected problems. And while doctors are great, I've found that a lot of trying to figure out what is wrong with me has been through trial-and-error on my own. Doctors are trained to treat symptoms and sometimes it's hard for them to make the connection between a variety of "vague" symptoms.
  19. Hi, I just got diagnosed after 50 years of floods of Celiacs symptoms. ive always been a health nut,I work in the fitness industry (which is getting tough with the 7 months pregnant wheat belly I have)..and I'm not pregnant. Anyways I had test done in Oct 2012 and then again after 4 months of a gluten free diet.  My IGa scores are HIGHER than they were before eating gluten free. Is that normal? Also I have hained 15 lbs and feel the worst I have ever felt in my life. I cannot even take my depression meds because they had wheat in them. I'm at a lost here. I have had severe bloating about 20 years and i am shocked how its gotten even worse on the diet. So far the only improvement I have had was all the scalp,arms and buttocks sores are gone.    I am trying to take a product to heal my intestines and have also been eating lots of probiotic yogurts..and not the sweet yummy kind either. I am sick as a dog and fear my belly is just goin to explode one day. I cannot even do any sit ups or ab work of any kind ,its so painful. I can only wear spandex type clothes because nothing else fits. I have had a mysterious left side just under the rib cage pain that Im tired of going to the Drs for, they are just idiots and not worth the co-pay anymore.   I need serious help here. I feel like Im gonna die a painful death with this. Please help..anyone Jodie
  20. My 10 yr old (Celiac and gluten free 3 yrs) has been experiencing these symptoms along with occasional mood swings. the headaches and body pains usually go together and the low grade fever ( 99.0- 99.5) has been intermittent. She sometimes has fast mood swings and anxiety too.    She was dx with Hashimota's disease but her TSH level went from 8.8 to 5.5 in 3 wks (avg 0.5-5.3) so Dr says she does not need meds just to watch for fatique, weight gain other symptoms   I started a food diary but it's too soon to be sure of anything. I stopped Artificial sweeteners to be safe.    Mood swings and anxiety was dx as results of Pre-pubescent and school worries. Based on how and when she has them I can see this as good possibility.     But with all her other symptoms I am just wondering about Soy , Casein etc...   Headaches, fevers and body aches are 4-6x week.   Anyone experience these symptoms with food allergies ?    thoughts appreciated 
  21. This is my first post and my story is a little complicated so bare with me, I will try to make it short. Just looking for some feedback and anyone that experienced something similar or any advice. Little background: 26 yr female vegetarian for 5 yrs, was active before symptoms began It all began back in July 2012. I started felling tired all the time, extremely sore neck and shoulders which caused severe debilitating headaches, brain fog, hot flashes, body aches, lightheaded etc (no stomach issues). I kept going to the doctor saying something was not right with me and kept getting the same answer, it is muscular. So I changed how I sat at work, did neck stretches, spent tons on chiro and massages. No releif. I almost passed out while food shopping so my 4th time to doctor I had done my research and said test for everything, Lyme, west Nile etc. (not gluten). My doc also ran a mono spot which to my surprise came back positive. I cried when she called because I was so relieved to have an answer and an end in sight. I was on work restrict of 1/2 days for a month. They said there is nothing you can do but rest. Very slowly I started to feel better. I wasn't myself until the end of October. This time period for me was a personal h*ll so I was so happy to have it behind me. Fast forward to January 2013. The sore neck hit me first, then the awful headaches and hot flashes. Pretty much every symptom had returned. I was 100% convinced I had mono again. And this time it hit me even harder. I couldnt work at all, I was off work full days starting in early March with no diagnosis (chronic condition they called it) To make long story short it took me 5 visits to the docs again to get it through to them that this was not muscular and had to be mono again. They finally ran a more extensive blood test to see if mono was active currently and it was. No one could explain it. My CBC blood tests were normal. Last time they were elevated. I rested daily from early March and hardly left the house to do anything, I was told to be off work for 4 weeks and rest. I was starting to feel a little better and then March 22 I felt a million times worse. I began to notice when I felt my sickest I was burping a lot and even had some gas which always made me feel better. Usually during this time I had hot flashes too. One night I woke up with severe pain in my chest. I was so scared it was my heart. Then I starting burping and the pain went away slowly. Also good to note was that I wasn't sleeping well at all. One night I awoke at 4am and couldn't get back to sleep until 8am. Sometimes I just couldn't fall asleep until very late. After that scare, I decided to see a diff doctor. He right away said I do not think you have mono again. Your CBC levels would be elevated if fighting off a virus and the other test isn't all accurate. He said I probably have something post viral and thinks CFS. I mentioned the burping and he didn't know what would be causing it besides a medrodose pack I had finished a while ago. I mentioned maybe systemic yeast as I have struggled with chronic yeast Infections for years. He pretty much said that was not it and doctors do not really believe in that. He decided to treat it like CFS and prescribed tramadol for my neck pain and amitriptolyne to help me sleep. He also mentioned a gluten free diet in passing. I kind of laughed it off and decided to research it some more later. That night I took the tramadol and the neck pain was relieved significantly. I ate some tuna with pickles and a wheat frozen pizza. That night was awful. Severe stomach pains, gas, burping, chills and hot flashes. It lasted from 9pm-2am and it was awful. Something in my brain clicked and thought maybe the gluten from the pizza did it. Saturday March 31 was my first day gluten free. I also begun tramadol 2 times daily and the other for sleep at night. The week went well. I was feeling much better. Able to get up and do a few things. I didn't know whether to attribute to meds, diet, just good timing or what. The neck pain is still there when the pain meds run out so the diet hasn't eliminated them and I'm still having trouble sleeping. Here's the kicker, I was doing very well until last night I awoke at 3am with severe stomach pains again. I couldn't pass gas or burp so I started throwing up stomach acid. After that I could burp some and my stomach was ok enough to sleep. But this morning I awoke with an upset stomach and it lasted all day (still there now) with burping and gas all day. I hadn't eaten any gluten and am 99.99% sure there was no cross contamination. The only single factor to my two worst stomach pains was having tuna that day. I can't imagine it was from the canned tuna. Right now I don't know what to do. Do I continue the gluten free diet? I've read I can't be tested if I'm not currently eating gluten. I wish I would have been tested before going gluten free. I am also afraid if I go without eating it, I will be intolerant forever as I've read ppl have problems with the body processing it after cutting it out. I don't want to stop eating it if that is not the problem. Do you think the mono caused a gluten intolerance? How do I know if gluten is the culprate if I've already taken it out of my diet and now had stomach problems? Could tuna be the problem? Anyone have any experience with systemic yeast? I can't find a whole lot about it on the Internet but still consider it a possibility. What else could be causing all of these symptoms? What could be causing the stomach issues? Are they related? I am going to see a neuropathic/alternative medicine doctor on Monday as well as my regular doctor to see how the tramadol is working. He said if my neck muscles are still so tight he wants to do trigger point injections. What should I be asking these two doctors? I just want some answers and some way to get back to being normal me. I have also been tracking my food and how I feel for the past two weeks (one of them gluten free). THANK YOU FOR TAKING THE TIME TO READ THIS! From a person struggling to gain their life back, I sincerely appreciate it!
  22. Around about now ive had cealiac for about two years, and its been generally pretty bad. Ive stuck to a gluten free diet for abou the whole two years and ive noticed not much of a change in my stomach pattens. I was diagnosed after i got cealiac a few months later. I drank some mass gainer protein then i got it. I've eliminated all the gluten out of my diet but i still get these stomach aches, it never gets much better.
  23. The results of biopsies (Dec,2012) follows: The small intestines: No evidence of celiac disease in the 3rd and 4th part. However, at the 1st part(duodenum), showed mildly chronic peptic duodenitis, associated with villous architectural damage. The villi were widened/blunted. Negitive for H.pyloric. So stated, PD mimics celiac disease villous abnormalities. The stomach: Antral mucosa w/mild chronic gastritis. Negitive H.pyloric. The esophagus: mild mucosal inflammation due to acid reflux. I over indulged in chocolate and balsam vineagrette recently. My last endoscopy was Sept, 2007. Similar results(AR/GERD). My GI Doc is pleased with stability of GFD. Next endoscopy: 2017. For GI discomfort, 40mg Omeprazole/1 daily was Rx'ed. Feeling better already. Make progress, become well and stay well.
  24. hello everyone i'm new to all of this celiac thing having only been diagnosed at aged 39 (unofficially) 5 weeks ago. a history of at least 5 years of gi problems, increasing in severity the last 2 years. have low ferritin (4), low haemaglobin (9.2) borderline deficient b12. i have been gluten-free for almost 5 weeks and initially began to feel better quickly and i was SO happy ... the thing is 3 weeks into being gluten-free i had a terrible attack of aches and pains, feeling cold and terrible night sweats for a week. it seemed to resolve itself and i have slowly been building myself back up again... then again 4 nights ago i started feeling cold and sweating profusely through the night, i have also had loose bowels, no aches or pains though, but could sleep half the day. i am at my wits end, i'm so depressed, everything i google with night sweats keeps coming back to lymphoma... and obviously anything you google with celiac mortality rates comes back to small bowel cancer and lymphoma etc.... i'm already depressed and anxious, but now i just dont know what to do... i'm so worried i have something sinister mostly because of these night sweats (they are terrible) i cant sleep after i wake at around 3am drenched. i have been very careful to be gluten-free and don't believe i have cross contaminated. i'm trying so hard to keep things in perspective, as i have a little 5 year old boy to look after. i am so frightened, and very stressed... can't get an appointment with my doctor until 8days from now (as usual)... and i am so sick of docs and hospitals... colonoscopy came back neg, i am waiting for an endoscopy and an MRI of my intestines, been waiting 6 weeks and its torture. pleeeeeeease anyone, night sweats????? appreciate ANY help, thank you
  25. I just found out about my Celiac about a month ago and have been adjusting fairly well to the gluten-free diet and, for the most part, am feeling much better. However, I'm getting REALLY bad nausea and upset stomach (diarrhea, exhaustion, acid reflux) whenever I eat a lot of different food that don't have gluten. I haven't really been glutened except for a few times there was a dirty pot or my roommate left crumbs out and I had severe cramping and bloating that doesn't feel like this does. I'm writing this after having eaten some gluten-free mac and cheese that I made last night, that also made me feel incredibly ill then but I thought it was just because I had a long day. None of the ingredients are spoiled and I checked for CC. All that was in it was corn noodles, Smart Balance light, cheddar cheese, Bob's gluten-free flour, milk, chex, and salt/pepper. Could it be that I have lactose intolerance? I understand that's fairly common amongst us. Is it just that those with Celiac are just oftentimes ill by things? I'm new to this, so I'd really appreciate the help.