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  1. So I was diagnosed with " Severe Celiacs disease " last year, but I was told nothing was seen in biopsy and I haven't done blood work yet, the only thing that indicated Celiacs was the damage done to my villi.... before I was diagnosed I was very sick I couldn't eat at all, like throwing up, diarrhea, chest pain, neurological problems and headaches, thought I had cancer. Ok skip forward, I've been on this gluten free diet since November of last year and decided to go ahead and cheat my diet, well I've been eating nothing but gluten for over a week and wasn't getting sick but now I'm starting to get chest pain, weird headaches and a little bit of an upset stomach... Is it possible I wasn't getting sick because I'm now I silent celiac even tho before symptoms were obvious, or could I have been misdiagnosed? Still haven't done blood work and nothing was in the biopsy, However my villi is damaged severely, is more positive I'm sensitive to gluten and the damage of the villi is caused by something else? Please help me, I'm so frustrated with my body because of all this and even more frustrated I wasn't getting sick before but now I think I am.
  2. Hello! I have been searching extensively for a topic similar to this and I haven't been able to find anything - sorry if this has already been addressed. I had a blood test for lots of different things a few months back and it transpired I had shown up as having Coeliac disease. The doctor suggested I go on a gluten-free diet (what a turd) before getting my appointment for a gastroscopy to 'rigorously confirm' my diagnosis. Went on the gluten-free diet - felt amazing. Two months after this I had my appointment date for the gastroscopy and started my 6 week Gluten Challenge. First three weeks were okay - minor tummy discomfort, lots of tiredness but generally fine. Last three weeks weren't great. I had my gastroscopy on Thursday 5th July - it was awful but quick. I had no sedation and went home the same day with some discomfort but nothing unbearable. Since then, however, things haven't been fantastic. For the last few days I've adopted a low FODMAP diet (as well as back to Gluten-Free) to try to ease my problems which has helped, but it seems like on the two occasions this weeks I've eaten/tried kidney beans/haricot beans/chickpeas/lentils I have THE WORST STOMACH EVER. What is going on?! I'm Vegan and I gotta say this stuff makes (and made) up quick a large chunk of my diet. Has anybody else had any extra sensitivities after their Gluten Challenge/Gastroscopy? I'm taking charcoal tablets, drinking peppermint tea.. All that jazz. I was so looking forward to going back to normal and it's just not happening. Would love to know if I'm not alone with these issues! Yours fed-upedly, Beth
  3. Hello, I've just made my account today, but i've read lots of posts in the past that helped me throw the bad days. I've been diagnosed with celiac 3 months ago (after 6 months of pain, gas, bloating, constipation, brain fog and fatigue) and i tried to be strictly gluten, corn, diary, soy (only 1 month) free. I also cut most of sugars, and other grains besides rice. I eat mostly veggies, fruits, fish, chicken, rice and quinoa. Sins then i've been back and forth with my symptoms as i had good and bad (more often) days . I learned that i need to be patient and give my gut time to heal, but for some time i have a continuously pain in lower right side of my abdomen, a pain that feels like i have a knife inside my gut. It gets worse after i eat and food arrives where small intestine meets the colon. I'm pretty sure i am gluten free and that i'm not experience any CC cause i have a food journal, the pain is a little different and i don't get fatigue, brain fog and depression symptoms. Does anyone of you have this kind of pain? Is this a part of healing process? I should give my gut more time to heal or i should go to take some tests?
  4. Summary:History of gluten intolerance, symptoms have returned despite no change in diet after 5 years of the same gluten sensitivity, I now seemingly react to the smallest cross-contamination and am not getting symptom relief. Do I need to worry about refractory sprue? I posted this on the celiac sub-reddit about two weeks ago but now I thought I could get more input here. A little background. When I was 14 years old, I started having strange joint pains in my wrists, persistent neuropathies and tingling in my hands, and other strange symptoms. Pains were seemingly inflammation of the tendons, made worse by exercise, and the inflammation responded well to NSAIDs. Went to a ton of doctors, tested for RA, MS, and anything else under the sun, but everything came back negative. "We don't know." My digestive health wasn't too bad or too good: I got constipated and got diarrhea from time to time, but not too often. I didn't really experience severe abdominal pains on a consistent basis so I didn't think anything of my digestive symptoms. As a result, no one checked anything digestive. The inflammation went away with NSAIDS. The only lasting effect after was that I absolutely couldn't exercise without developing terrible tendonitis and Joint pain within a few days, which caused a lot of depression. The disease remained stable in nature for a while until when I turned 21 or so. The chronic tendinitis spread to my ankles in addition to my wrists. The inflammation began to happen without any exercise, just from me existing. I also began having some more severe digestive problems, loose stools, poorly-formed stools, stomach pains, and felt like I was in a fog all the time. I tested negative for everything rheumatological. During a late-night research session, I googled a bunch of my symptoms and found out that a lot of people with gluten intolerance experience these same symptoms. I immediately went gluten-free. Over the course of the next two weeks, my digestive health was completely restored, and my joint pains were decreased by about 80% after about 1-2 months. I had an enormous amount of energy. I felt like a new person. I went to the doctor and got tested for Celiac, but the antibody test came up negative. I was already on a gluten-free diet, so I know that probably meant little. I know that my symptoms are not reflective of traditional Celiac and I apologize for self-diagnosing (no positive test). All I know is that going gluten-free absolutely changed my life and restored my health. Over the past five years, I've had absolutely no baseline changes in my gluten sensitivity. I cook most of my food, and eat at places like Chipotle and occasionally eat at restaurants and make sure not to order anything with wheat, rye, or barley. I get "gluten-fee" pizza at pizza places knowing that it's cooked in the same ovens with bread and do fine. I avoid beer and am careful with my alcohol selection, but basically, I was always able to tolerate cross-contamination. On the one occasion when I did eat bread, I had diarrhea for a week or two and then was back to normal. I was still tremendously prone to repetitive strain injuries and inflammation, but not to the same degree I had been before and ONLY after exercise. I was living my life. ... Fast forward to about 2-3 months ago. I have been going through a very stressful period in my life, and I think the stress triggered something. Simultaneously, I have a "glutening:" for a period of a couple of weeks, on 3 or 4 occasions, I eat sushi with imitation crab meat and rice binder that has wheat in it. I start having the pains in my ankles again. X-rays have shown that my ankles are swollen, and I haven't done anything but stayed on my feet and walked. Start developing tendonitis in my wrists again. The loose stools and indigestion are back and I feel like my brain is in a fog. I only get a little bit of symptom improvement if I eat the food I cook for myself. . I now respond to foods I wasn't responding to before. Eating at the same cafeteria I was eating at 5 months ago without a problem now causes a reaction. I have seemingly become very sensitive to ANY cross-contamination whereas just half-a year ago I could tolerate it without a problem. This is after five years of absolutely no change in my baseline reactivity. What the hell is going on? I've HAD glutenings before years back, and they never caused my symptoms to return and persist as they have now! And they NEVER changed my baseline sensitivity to gluten. All of my rheumatological tests have come up negative. I finally spoke to gastroenterolist yesterday and he agreed that this could be Celiac's disease, but had no answer for me on whether my baseline sensitivity would improve. I'm not willing to gluten myself for 6 weeks to get a positive blood test. The symptoms are too much to bare and I am trying to finish graduate school. My question is... if I do have Celiac... Has it suddenly gotten worse? Is it normal to have a sudden worsening of this condition, after 5 years at steady-state? I feel like I'm losing my mind, and have no idea what to do. I'm in constant pain and it's miserable. Whatever this is, it has taken such a huge toll on my life now.
  5. Kristiceliac

    Help :(

    Idk if this is the correct way to ask a question on here but I couldn’t figure it out lol but I was diagnosed with celiacs disease about 2 and a half years ago and I have been okay since then I have been what I thought has been a completely gluten free diet and am really good on stayin on top of my diet but I have recently been getting vertigo and a burning feeling in my stomach as well as bloating! I don’t get diarrhea just serious bloating and abdominal pain! I’m always having some kind of issue and want help because it’s horrible and painful. I am tryin g to cut dairy out of my diet because I am lactose intolerant but not bad, but this is just now happening. Anyone else getting symptoms like these?:/
  6. Hello all. I suspect that I am gluten intolerant. I went gluten free last Monday. About two days after that I felt great! However, yesterday I started feeling bad again. Today is even worse. I'm having leg cramps again, bloating (it's like I went up two sizes in two days!), bad cramps, muscle spasms and joint pain. Is it possible to go through gluten withdrawl after feeling better? I've also been very careful with my diet too. I've also been more on edge and angry. I am not an angry person...
  7. I was diagnosed with Celiac Disease back in October 2009. I seem to be OK as long as i stick to a strict gluten free regiment which can be challenging at times. It is difficult to know if a product is truly gluten free when its labeled as such. I only buy gluten free labeled products and i'm still having problems with my stomach, specifically pasta. In the past year i switched from Tinkyada brand pasta to Barilla. I had heard and read that the taste and consistency of the Barilla gluten free product was not much different from traditional pasta. Being Italian, we typically have pasta every Sunday so this was great for me. In the past few months my body has been rejecting the Barilla gluten free pasta and i'm not sure if its due to a cross contamination issue. I'm tired of feeling sick and being in pain and would like to get to the bottom of this ongoing problem. Has anyone else had any problem with the Barilla gluten free brand?
  8. DebLee Salzman

    Gluten Exposure for Celiac

    Celiac diagnosed in 1992. Ate Domino's gluten free pizza (1 small slice every evening for 2 weeks) Experiencing severe bone pain similar to pre-diagnosis. Wondering how long it will last. Anyone else have this following gluten exposure? DebLee
  9. Hi there, I was just diagnosed (well sort of, the blood test was positive and the nurse said she was nearly certain based on what she saw in the biopsy but are waiting results from the samples) and Im dealing with a lot of the emotional stress with seemingly none of the support. I have received next to no info on how to actually go gluten free from any doctor and that is only part of the problem. Im wondering how long I could have possibly had this? Ive had symptoms that dont actually match celiac disease very well but closely enough? for years but none of them stem from eating foods containing gluten. Every once in a while (maybe 2-4 times a year) I have these attacks where no matter what I eat I get sick, during these attacks I avoided food but when Im finally able to eat again the foods that provide the most relief and ease as bagels and crackers. I cant even get liquids down have the time and soup always sits too heavily. I dont get reactions from gluten at all. The only reason I was tested in the first place was because I had taken some new hormone pill for an unrelated illness that set off a bad reaction at first and I just never got better. I do have to say after reading a few of these forums Im terrified about what awaits me in my 30's and 40's. Ive read so many horror stories about pain and complications I have to say Im in a little bit of a panic. I dont know if I can take anymore daily pain. I have endometriosis and pcos (poly cystic ovarian syndrome) and Im already in pain that some days is just too much to take. On top of that dealing with years of depression and anxiety (that I pray are not caused by celiac because that would mean Ive have celiac since I was 13). I have to wonder how much damage has been done and if theres a way I can avoid suffering that much more. Sorry this was long and a little hard o follow Im sure but I feel Ive received no information or support from my doctors and I dont know where else to turn.
  10. Celiac.com 11/27/2017 - For centuries, physicians have used cannabis to treat numerous disorders. Modern research shows that various cannabis compounds can alleviate symptoms from numerous conditions, including neurological disorders, cancer, rheumatism, epilepsy, sexual disorders, pain, among others. Many people with celiac disease suffer from neuropathy, which causes nerve pain, among other symptoms. Neuropathy can be difficult to treat. Nerve pain is a debilitating symptom that can significantly impair a patient's quality of life. Could a new cannabis patch change that? Some researchers think so. One California-based company, Cannabis Science, is developing an innovative new medicinal patch specifically designed to treat nerve pain. In addition to celiac related neuropathy, the patch could be helpful in treating nerve pain from many illnesses including fibromyalgia, diabetes, and multiple sclerosis. The National Institute of Health estimates that over 5 million Americans suffer from fibromyalgia, which has no known cure, and is difficult to treat. With diabetes on the rise in the U.S., diabetic nerve pain is also on the rise. When placed on the patient's skin, the patch developed by Cannabis Science delivers a measured dose of high potency cannabidiol (CBD) extract. CBD is the second major cannabinoid in marijuana after THC, but CBD has no psychoactive effects, so it won't get people high. When the patch is applied, the CBD is first absorbed into the blood, then moves to the central nervous system, where it delivers pain relief. Numerous studies have documented CBD's “anti-inflammatory and pain-relieving properties. More recent studies have shown that CBD provides relief from many kinds of pain. In addition to nerve pain, CBD has been shown to relieve inflammatory pain. Some studies have shown CBD to be more effective than current medication in treating inflammatory pain, such as pain from arthritis. As researchers home in on the pain-relieving properties of cannabis, look for more treatments to be developed, including treatments that may helpful for peopl with celiac disease. Read more: cannatech.news
  11. Hello everyone I'm new to this site, I'm 21 years old female, and was diagnosed with celaic diease last year 2016. I had an endoscopy, this was a relief to me since I always had stomach pain everyday and been throwing up so much not knowing the reason. Im strict on this gluten free diet started preparing my meals at home. If I do eat out I only eat at gluten free restaurants in my area. Which is rare. I don't know what to do I have this lower stomach ache and back pain all the time I get nauseous everyday I wake up. I've seen about 7 doctors so far and none of them know what to do. im starting to get headaches and breaking out all over my arms. I feel this pressure in my stomach when I lay down. I have body aches and shivers. I'm scared this is something else separate from celaic diease. Doctors want to put me on anti depressants but I think this is something else. Does depression make you feel this terrible? i don't feel like eating anymore my doctor told me I lost a lot weight since last year but she's not concerned because it wasn't all at once. im dropping a lot of pounds recently I just don't know what to do...does anyone else have similar pain? thank you for reading I know this is a lot...
  12. Alexandraleighclark1

    New and need advice

    I am very new at this, sorry if this is to much tmi. About 3 months ago i started having problems. At the time I had no stomach pain just direah anything i ate went right through me. I did stool samples sent them in and all came back fine. He then diagnosed me with ibs. So i did some research and took a few things out of my diet but was still having problems. At one point I literally had a blow out. I was stumped had no idea what to do. I felt lost I took gluten out of my diet 100%. Its been about two months being gluten free. Now if I accidently ingest any sory of gluten my body goes in attack more, throwing up and direa until its out of my system and then im completly fine. My labs came back fine for celiac but he said that could be because i've been gluten free so it wouldn't show in the labs. He said I could do a scope but the only treatment would be a gluten free diet and im already doing that, so there isn't a point really. we are thinking celiac because my body goes into complete attack mode if i eat any sort of gluten. Is this how it is with celiac is? Before all of this I used to experience extreme gas issues to the point of throwing up. I'm just lost a little bit. Do I have to take supplements? If anyone has any advice it would be appreciated.
  13. Curious if Celiac affects the kidneys in any way? I had a bout of intense pain under my right rib cage that lasted almost 2 days. This pain was worse than child birth and constant. I ended up in the ER several times since this incident. I've had several ultrasounds, two CT scans, MRI of pelvis and abdomen, HIDA scan, colonoscopy and endoscopy. By the time I had the colonoscopy and endoscopy I was only eating gluten on occasion and I was in the hospital for 3 days fasting for various tests. I read your intestines can heal pretty fast making it so a biopsy would be negative- which in my case was negative. During this time I had many urinalysis done and something was always abnormal in them- blood in urine, high wbc, bacteria.. After this bout of pain I haven't been the same since. I always have pain in my ribs on each side (I've noticed the pain turns to burning and tingling pain if I eat gluten or dairy) After my second MRI (done with a brand new machine) I was told I have a "lymphocele" behind my left kidney- not attached. This radiologist was asked to look over all my previous scans and sure enough it's been there since day one. I read these can be a misdiagnosed urinoma. It got me thinking, I've had all these abnormal urinaysis test results, along with bubbles in urine, white mucusy strings and at times feeling of being kicked in the bladder especially at night. I'm told this would not cause my pain as it's only 2cm, but I beg to differ! I now have constant discomfort in my ribs and if I eat gluten my pains become worse. I usually get symptoms a day after, but I've had bad symptoms happen quickly (ate out at a restaurant that claimed to have strict gluten kitchen practices) I got bad cramping about 10 minutes into my dinner and felt like someone kicked me in the ribs days after. I made grain-free chocolate chip cookies for my family and I two days ago and I think I've been glutened yet again. I used Enjoy Life mini chocolate chips which have never bothered me before and Bob's Red Mill almond flour. I also used garbanzo bean brine in place of eggs as I'm intolerant of eggs. For the past 2 days I've felt like someone is pressing in my chest and my heart feels like it's fluttering (my husband checked several times, and it's beating fine) and I have a odd pit in my stomach almost like an excited feeling with burning, random bouts of pain in my abdomen and flank pain. I feel so weak and tired like I have the flu or an infection, I keep getting muscle aches and spasms in my upper back and neck and annoying headaches. I'm so scared it's affecting my kidneys yet again, but I have no idea if it even affects the kidneys or not. If anyone has been through anything similar or can tell me if Celiac affects they kidneys I would greatly appreciate it. Thanks so much.
  14. I was diagnosed with celiac 2 years ago and since have been gluten-free. When I started my ttg was 88. I just recently visited the doc because I still seem to suffer from almost daily stomach pain. My ttg came back at 4. The doc suggested I try Metamucil and next week give lactaid a try as I still eat dairy. The metamucil I took one day and I had such bad stomach pain and loose bowel movements I felt too miserable to try it again. I haven't tried the lactaid yet but in the past I have and didn't see much difference. Heres the other thing: I do eat out a lot. I try to stick with safe places but every now and then I play the odds. So I usually manage to get sick once a month (lately it's been more) so I went to the doc and had my ttg level tested to see if my body is still getting gluten and this is why I still feel horrible. But my levels came back at 4, so now I'm just wondering... what the heck? I'm feeling super discouraged and doomed to a life of unexplained stomach pain. The annoying part is all my dr did is give me the results. Like "oh you're continuing to improve." Ok, but I'm in paid so what's going on? No answers, ever. It seems like I get suggestions, but they never do anything and I'm so fed up with my body. I'm tired of waking up frequently wondering what I could have ate that is bothering me. I had no idea two years later I'd still be struggling. Lately the stomach pain has increased and it's daily now again. I've been taking pepto for it and it helps a bit, but I don't want to live life digging in my purse for pepto everyday. any advice or suggestions from anyone who has been through this are appreciated. I get that celiac may not be the only problem but I don't know where to go anymore as I've been searching for 2 years.
  15. Natalia'sMom

    Advice please

    Hello. I need advice. My beautiful 8 year old is in terrible pain. I took her off gluten and she is so weak and tired and in constant pain and is getting huge bags under her eyes. I'm scared for her. She's due for her upper endoscopy June 13th to confirm Celiac. Why is she getting sicker? Has anyone tried the Breaking the Vicious Cycle book? How can I put her back on gluten if she's so sick now? Should I? Ugh. I just want her to feel better. I'm new to this. We only found out at the end of February but I can't seem to get her well. We've gotten rid of the gluten in the cat food and shampoo and everywhere I can think of. Is it the gluten or something else? Has anyone been through this? Thanks, Kirstin
  16. I am a 23-year-old male that has a life long rare anaphylactic allergy to dairy but other than that am in shape and based on doctors analysis "healthy." This all started a year and a half ago or so, throughout the experience people had told me I could be celiac but I never really considered it. So a couple years back I developed this issue that caused inconsistent intestinal pain, inconsistent bowel movements (mostly diarrhea) and most uncommon a sore what I now believe to be "lymph node" in my groin. At first, I thought it was just intestinal issues, I was going through my third year of college and had just gone through a couple years of crazy partying and thought it was maybe coming back to bite me in the behind. I had a period for the next six months where it lasted but was inconsistent, the lymph node would feel better after bowel movements and things were okay. I was starting my first job and kind of put it aside for a bit. About 8 months ago now, the pain in my lymph node turned to swelling in my groin and left testi (the side with the affected lymph node). It then starts when I got erections that it would cause a pain in my testi, almost like a pulling feeling and would eventually lead to myself having to stop any activity in that area do to pain. It was inconsistent, but it was definitely there ever 1-3 days and flared up very bad at times. the bowel movement issues and uncomfortable stomach feeling continued to get more chronic (I had other weird signs too, uncalled for fatigue, severe rashes, breathing issues). After months of tests for hernias, infections or other issues through blood, urine stool nothing was coming back. I finally went to see a very decorated allergist who is a legitimate doctor allergist, with degrees. She says I could be a celiac again, so before going for tests I stop eating gluten completely. Two days later my testi and groin swelling disappears, now 12 days later it is still gone, hasn't come back and this is not in my head everything feels SO loose, not even one sign or incident. My energy feels great, however, I did suffer from a rash and the stomach and inconsistent bowel movement issues are still somewhat there (although getting VERY better every day). I had a colonoscopy done a few days ago and I have nothing serious (crohns, colitis etc) but for the bio results to come back, it takes weeks (the bio tests can show signs pointing to celiac). I am now paranoid it's some weird form of IBS or something, but the swelling in my groin, testi and lymph node pain, rashes and fatigue doesn't make sense for IBS and there is NO DOUBT that many of them have essentially disappeared since stopping gluten. I am just wondering if anyone knows if it is common for it to take some time for the stomach/bowel symptoms to clear up and if what I have sounds like a potential form of celiac? My body has always been very strange with food allergies (hence my dairy allergy), oh and I have completely stopped drinking for essentially over 6 months so that isn't an issue (sorry about the length).
  17. HI all. Blood, genetic and 3 biopsies diagnosed Celiac 2007. Spent 10 years on elimination diet of 9 foods to have stable colon and CRP. Never had bad Celiac numbers and my weight dropped 90 lbs from inflamation under control. Great cholesterol. Last two years have been adding foods. Last summer developed sharp pain in right flank, severe. After ultrasounds and MRI no diagnosis. Three back to back bladder infections and high CRP, Westergreen and Cholesterol later I went back to elimination diet for 30 days. Hard with food and starvation fear. Blood perfect again. Just wanted to share that obviously some food I added took me down hard. I am militant gluten-free and my Celiac blood work was normal throughout. Pain is gone. Anyone else experience this. Did you find out what it was and what test or Lab? Thanks to all who share here.
  18. I was diagnosed with celiac almost 3 months ago I have been completely gluten free since then. For the past 6 months or so I have been having occasional stabbing left rib pain and I feel better since going on the gluten free diet. But I still feel like I'm in a bit of a "fog". Prior to the celiac diagnosis I experienced red blood in my stool multiple times. I've been told the blood in the stool was just a coincidence along with celiac disease. They thought maybe a hemmeroid. But my question is could the blood and the left rib pain somehow be connected with a deeper issue? Has anyone else experienced anything along these lines? Please share your thoughts on what it could be/what I should do? Since the gluten free diet I haven't experienced any blood in stool.
  19. Hi guys. I really need help/someone to listen/someone to understand. Today was absolutely horrible. I started out feeling fine this morning just a little tired but by noon or so an incredible headache washed over me and I've been sick the rest of the day. The headache wouldn't stop and along with it came stomach pain and worse joint pain than I normally have. I came back from class and basically passed out on my bed for hours and woke up to even worse joint pain and a nonstop gurgling uneasy stomach. Lately I'm so thirsty nothing quenches my thirst and I cant even sleep through the night because I have to pee so many times the amount of water I'm drinking. I've been trying so hard to be careful and not contaminate myself. I'm not sure if this is contamination or healing. Can recovery really be this painful? I'm 2.5 weeks into recovery. I couldn't stop crying this afternoon I just wanted it all to go away and I don't know if it's from me not being careful or this is just part of the process. I feel so defeated I have no energy, I don't even remember the drive back home today from classes. If I had the choice to stay in bed all day today I would have and probably slept the entire time. I eventually mustered up the strength for a quick shower and to vent on here. I just don't know if I'm even doing anything right...I read all the books I got and asked the forum questions and I follow all the wonderful advice given to me... I just feel pretty down today because I just want to be better already I can't live this way everyday.. It's especially hard around this time of the year since I have finals which are especially important since I'm a senior and need to pass because I'm graduating in May. All day today I just wished someone was here to take care of me which is very unlike me since I'm way too independent for my own good. I'm just very overwhelmed
  20. Celiac.com 11/15/2007 - When I was diagnosed with celiac disease a number of years ago, I had the misfortune of being directed to the local hospital’s dietician for counseling. After she confessed that she, too, was celiac I anticipated some great tips for managing the new dietary regime. To my surprise and disappointment, she gave me less information than I had already learned from the internet between the time of diagnosis and my appointment. Then she sighed, “You’ll see. After a while, food just becomes less important to you.” To someone who has always enjoyed good cooking and good company, that was clearly unacceptable – and it was utter nonsense. I promptly went to the bookstore, bought Rebecca Reilly’s excellent cookbook, “Gluten-free Baking,” and made a delicious gluten-free French apple tart. I put some whipped cream on the side and brought a slice to my internist, leaving it at lunchtime with thanks for a life-improving diagnosis and a suggestion not to send celiacs to that dietician. There have been too many fabulous gluten-free meals in my life since then to count. When I retired in July, I was ready to take on new gluten-free adventures. My husband and I decided on a six week self-guided bicycle trip, variously camping and staying in inexpensive lodgings throughout southernFrance. Of course, I had to figure out how to manage celiac disease in this land of patisserie (pastry) and pain (bread). But I was determined to have a “pain-less” trip. To cut to the chase, we had an incredible time and I ate wonderfully. We had gourmet picnics, restaurant meals, and dinners cooked on our camp stove. I only got sick once. For fellow celiacs contemplating European travel, I’d like to share here what I learned, including specific brands and general suggestions for how to get along. I do have the advantage of reasonable fluency in French, but with a little help you can manage without that. First, I suggest you go to: www.afdiag.org. This is the website of the “Association Francaise des Intolerants au Gluten” (French association of the gluten-intolerant). On this site, there are several particularly useful pages. One has a handy chart of foods that are “interdits” (forbidden) side by side with those that are “autorises” (allowable). I carried a print-out of this page and used it in restaurants, butcher shops, etc. I found it considerably more detailed than something like a “cuisine card” (such as the gluten-free restaurant cards available at Celiac.com). It shows particular types of regional sausages, for example, that are safe for celiacs, and so helped me pick out pates and cured meats after consultation with each charcutier (butcher) that I encountered. Of course, there is no substitute for being able to explain your needs and discuss a menu with the chef, but this page is a great aid. With this page and the help of a bilingual friend, I suggest you study up in advance, as well, on basic terms for wheat, rye, barley, oats, and food starch, as well as words for celiac-friendly grains such as corn (maiz), buckwheat (sarrasin), rice (riz), etc. Also, a restaurant card might be more helpful to someone who doesn't speak French than it would be for me. Another useful afdiag.org page, if you are lucky enough to be invited into any French homes, is titled “Recevoir un Intolerant.” This gives information and advice to anyone who offers to host you. Through a biking network on the web, we had arranged contacts with a few people who gave us meals and a place to stay, and I sent them e-mails in advance politely explaining that I am gluten intolerant, and giving the link to this page. The site also has a list of gluten-free product lines and distributors. Brand names that are exclusively gluten-free or that include some gluten-free products include not only those that are typically imported to theU.S., such as Dr. Schar, but also French and other European brands, including Valpiform, Gluta Bye, France Aglut, Barkat, and many others. By the way, the site also links to an alphabetical list by country of national gluten-intolerance organizations, which is a great resource for any traveler. Grocery Stores My travels were in southernFrance(the Dordogne/Lot/Vezere area, the Luberon,Provence,Carcassonne). We shopped frequently and I combed grocery stores in larger cities, includingAvignonandToulouse, smaller ones, such as Apt, and tiny villages and hill-towns for gluten-free options. In general, groceries, including the big chains such as Hyper Champion, did not seem to carry exclusively gluten-free products, such as baked goods, and I had to watch for hidden gluten in many brands, including yogurts and canned goods that, from myU.S.experience, I might have expected to be gluten-free. This was something to be cautious about in the organic food (“bio” or “biologique”) sections of regular grocery stores, too. Rice cakes were easily available in a pinch, and instant polenta made a quick camping meal after a long day on the bikes. Both were common products even in small stores. Where buckwheat crepes are a regional specialty, you can sometimes find them, pre-packaged, in the refrigerated section of grocery stores. They were delicious filled with fromage blanc and heated on our camp stove, then topped with fresh fruit and/or one of the many fabulous jams that are available everywhere. Of course, you can find many other delicious gluten-free foods to eat at any grocery, particularly in a country that excels in cheeses, olives, fruits, vegetables, chocolate and wines. French stores also often have roasted or vacuum packed pre-cooked beets and potatoes, which make simple additions to a meal if you have no easy way to cook. And there were some serendipitous finds such as a wonderful tinned almond cake, a regional specialty of Provence (made by “L’Amandier de Ventoux” from Biscuiterie de Provence). In the town of St. Remy, the artisanal cookie bakery also made several gluten-free almond-based cookie variations that were exciting. “Bio” Stores But the real treasure troves are found in just about any “magasin bio.” “Bio” or “biologique” is the French term for “organic” and a “bio” is a health food store. When I inquired about products “sans gluten,” I was often told that there is increasing interest in gluten-free foods, and even the smallest “bio” stores had them. We celiacs are benefiting from a trendy idea among health-conscious consumers that gluten is suspect – and hey, let’s enjoy the sudden proliferation of choices! The bigger “bio” stores had very wide selections. There, I found packaged gluten-free muesli, cereals, muffins, small cakes, and cookies of all sorts. Some stores carried cookies from “Aux Biscuits d’Antoine,” a dedicated gluten-free French bakery; I was leery about trying their buckwheat and grapefruit flavored cookies, but they turned out to be tasty, especially with hot tea. In general, the gluten-free cookie brands ranged from numerous types that resemble good non-gluten-free European packaged cookies (filled wafers, “sandies,” etc.) to purist health food-type selections (whole grains and unprocessed sugars). While salty snacks are not as prevalent inFrance as they are in theU.S. (the French think of us as a country of between meal nibblers and over eaters), some choices are available (Barkat brand pretzels are terrific). Some snack bars were gluten-free, including an interesting if crumbly one made from chestnuts (Domino Chataigne from Grillon d’Or). Bread Best of all, just about every “bio” carried several types of bread, all of which were vastly better than the dense, flavorless rice breads that are the default choice in U.S. health food stores. The breads included both “white” breads (including baguettes) and whole grain options. In my pre-diagnosed life, I always preferred European type breads, so I enjoyed sampling these. There are many choices in the Schar line, including “Sunna,” which resemble whole-wheat rolls.GlutaBye,FranceAglut and Valpiform all make different varieties of “pain campagnard” (country-style bread) based on rice flour, buckwheat flour, nut flour and other ingredients. Quinoa or teff flours are sometimes included. All have a nice sour taste, like that of a good light rye, because they are based on a levain (sourdough). I used to be very fond of the dense, German-style, thinly-sliced rectangular whole rye breads, and I was thrilled to find several gluten-free versions of this type of slow baked, long shelf life bread. Pural (“Bio c’est la vie”) makes a levain based “Glutenfrieies Volkornbrot” (German whole grain gluten-free bread/ “pain complet sans gluten”) with whole rice, millet, buckwheat, lupin flour (lupin is a type of bean but, thank heaven, it does not have the bitter beany taste of garbanzo and fava bean flours), and sunflower seeds. A similar bread, also German-made, was the Bio Kerniges Buchweizenbrot (organic buckwheat bread) based on buckwheat sourdough, corn, sunflower seeds, millet, buckwheat, soy, rice, apple fibers and honey. The wide variety of languages on the labels for these products suggests that they are distributed in many European countries. [by the way, friends traveling inNorwaybrought back a box of gluten-free Wasa crackers (Knackebrod) that were phenomenal. I contacted the company but found that this particular product is made by their Swiss subsidiary and they were unaware of anyU.S.distributors.] In two “bio” stores, I found the holy grail of gluten-free breads: freshly baked, with an excellent crumb and chewy European-style crust. These were 100% buckwheat (“pur sarrasin”) breads made by local bakers. The two stores that carried them only got them once a week and had a few loaves, which were quickly snapped up by eager customers. While I was never able to chase down the bakers, from whom I wanted to learn a few tricks of the trade, I was astounded at how good these breads were. They were nothing like the leaden buckwheat loaves that I have eaten (or rejected) in theU.S. I once bought one of these at the Flying Apron in the University district inSeattle, a bakery that has otherwise delightful gluten-free baked goods, and it became a running joke – we used it as a doorstop for a while. I brought home some levain sarrasin (buckwheat sourdough starter) fromFranceand have been experimenting in my kitchen, but have yet to get beyond the brick phase myself. Searching for recipes on the internet, to date, has not helped. Anyway, these breads are treasures to seek out. I was, however, happy to find a German-style whole-grain gluten-free bread when I returned to the U.S. Made by “Bavarian” (which also carries a number of similar but non-gluten-free products, so be careful) this gluten-free bread has a several month shelf life and contains whole rice, whole corn, millet, and sweet lupin flour. It has a very good taste and holds together well. If readers have other sources for gluten-free European breads in this country, please do share them. And happy travels!
  21. Since around Christmas or maybe before then I can't even remember a time where I wasn't in pain. I've had back pain shoulder pain, and leg pain, cramping in my pelvic I can hardly stand today doc diagnosed me with GERD last week. I don't know...I feel like it's something else. Anyone else have these pains, like a sharp cramping like a knife stabbing you in the back and bottom area? Pressure...feels like pressure and the worse cramps ever. It gets worse at night, I can't function anymore, don't go anywhere can't do anything I feel like crying... I hope I get some answers maybe one of you guy have similiar pains? So I can narrow this down tired of doctors telling me I'm fine or having everything come back normal when I can't even stand without hurting. Gone to 5 different doctors over the course of the passed two months I don't know what else to do... Thanks for reading...
  22. After 6 years of having many many medical issues (I am now 20), I finally got tested for Celiac and it came back a big fat NEGATIVE. In the past I have been scoped in upper and lower but all the doctors could find was gastritis causing my episodes of acid reflux. Years have passed..a topical ointment for this rash...a migraine medicine for that migraine headache....that sinus surgery...here's a steroid...I just don't understand why you need all these root canals...you have many swollen lymphnodes...the asthma...the dizzy spells....the weakness....I am only 20 and needing to take supplements for a Vitamin D deficiency when there was no reason for me to even have it in the first place! So after talking to my GI doctor, we decided it was IBS and nonceliac gluten intolerance (which he has yet to put on my chart but he said it was that if it wasn't celiac). It has been a week since that diagnosis and quite frankly, I just don't know how to feel. Like it's like one day you just walk in your doctors office, they give you a diagnosis, expect you to make this big change, and just send you on your way forever with no follow ups. So I feel quite lonely but okay. I am pretty sure another reason why i feel lonely is because my family just doesn't believe me. It is plain and simple like that. I tell them I can't eat something and they will say "well I worked hard to make it after working all day so just have a little bit" ... and then they wonder why I am in my bed all night long with the ice, heating pad, and meds that don't work. Ever since the diagnosis I was not taken seriously at all. The gluten free diet has made me feel FANTASTIC!!! But they don't see it. They think I "just need to chill out" when I explain that I will literally get heart palpitations if I were to eat gluten. They think my gluten driven rash (which my GI doc said is the gluten rash) is just some form of STD or something. The other night my chinese food was contaminated and I was so nauseous for 2 days and my mom just couldn't wrap her brain around that cross contamination bothers me and blamed it on "sleep deprivation". The list goes on people. After tonight I was just done with it all. I live with my parents because I am in nursing school and it is the most convenient. My mom made me dinner and swore it was gluten free. I ate it and felt off. I had worked a long day and was just like "well okay". My brother brought home breaded chicken wings which I was very attacked for not eating. Then around 20 min after my consumption of dinner, I broke out in my rash, got stomach cramps, diarrhea, nausea, a headache, acid reflux, etc. I told my mom I think her dinner had gluten in it and she was just walking around and huffing as if I had actually ruined her life by stating that. She even dug through the garbage ready to prove me wrong until she found the soup can...yes it did have gluten. And all she can say was "oh well sorry" and barely even spoke to me for the rest of the night regarding any of it. Didn't even turn to me to talk when i was speaking to her. Why does my family act this way and how can I deal with this? Why do they act so annoyed because my body is reacting to something? I explained to them millions of times what will happen if I ate it but they honestly don't care about it. They just don't. I dont have celiac but gluten obviously makes me react to it, even in very severe ways. So why should I have to eat gluten and suffer because of them? Why would they even be expecting such a thing? Non celiac gluten intolerance is real right? I just feel silly for doing something for me for once instead of taking care of their needs like I usually have to do. In the past I have gotten called hypochondriac by them to the point where I dont wanna even see the doctor for a sinus infection because I am afraid all doctors think the same of me. If anybody has any advice, I would greatly appreciate it!
  23. Not sure if it has to do with my celiac or not, their so painful I have three of them in my mouth now, burning it hurts. Not really sure the cause of them, anyone else get them?
  24. Lately I have been beginning to wonder if I have celiac disease because I have found I have a lot of the symptoms. I’ve been thinking about making the transition to a gluten free diet to see if it helps relieve them but I remembered this one time my friend bought a box of gluten free cookies and let me try one. I don’t know why, but my stomach was out of control and I was left feeling sick with a horrible stomach pain for the rest of the day. None of my friends who also had the cookies experienced this. I thought maybe it was just a random occurrence, but I tried the cookies again a few weeks later to see if the same thing would happen again and it did. I don’t understand why my stomach doesn’t like these gluten free cookies.