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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Found 28 results

  1. Hello today I'm just back from my gp. Following over 7 years of bloating and looking like I'm pregnant my gp done a series of blood tests one including coeliac. The results came in that I'm not celiac but my iron levels olthough I'm on iron tablets is low. My iron always drops then I'm put on tablets for 3 months then go's back to normal then falls again. I'm also hypothyroid so really at times I just feel Bloo£@ awful. my doctor now wants me to refer me to a gastroenterologist to look into other testing becaus aparrently he can do more for me. He also said that I should go onto a gluten free diet but when I questioned him if this was wise incase it may effect any tests giving a false result he said it will be fine as he's already done the blood tests. He said it's good to go on it because the gastro will ask me to go gluten free at my first visit and this will saves me being sent home to do this and will buy me some time... im a bit confused what I should do now. Do I start a gluten free diet now like my gp has suggested or should I just wait until I've seen a gastroenterologist?? thanks in advance.xx
  2. I am new here and looking for help and answers. Thanks in advance for any help you can give. Despite frequent testing I've not been diagnosed with celiac yet but I do wonder if it's the cause of all my issues. I have myriad life altering symptoms and I'm desperately trying to get to my root cause. I’ve been really quite sick since I was a child, when I had extensive gastric issues, followed by chronic fatigue , a rash and depression as a teenager. I am 41 now and have a number of illnesses, most of them autoimmune: Hashimoto's hypothyroidism Psoriasis Likely autoimmune atrophic gastritis (under investigation) Pernicious anaemia (low B12) Rapid cycling type 1 bipolar disorder with psychosis that hasn't responded to treatment with over 20 different psychiatric drugs Migraine (three a week) Chronic fatigue syndrome Hypertension Fatty liver Metabolic syndrome Familial hypercholesterolemia Obesity Investigated for celiac 3 times but not detected however my gastro did observe that my gut was hugely distended and that my stomach sat forward. I have many other symptoms as yet unattributed: Rash on eyebrows and cheeks, although it is mostly down the sides of my nose and not under my eyes Circular rash on chest Flaky rash on scalp Poor balance Poor positional awareness Clumsiness Weakness and muscle loss Foggy thinking Very poor memory Confusion (sometimes debilitating) Occasional panting / shortness of breath Anxiety and paranoia Persecution complex Restless legs Tachycardia and palpitations Sleep disturbances Debilitating intermittent ankle pain Aches in every joint and muscle Muscle stiffness Mouth ulcers Dry eyes Cold extremities Poor circulation Pins and needles Pain in calf muscles when walking more than 200 yards Total hair loss on lower legs Constipation / diarrhoea Blood in stools Pale complexion Moon face While there are a lot of conditions and symptoms it's the neuropsychiatric issues that have become completely debilitating, to the extent that I've been admitted to a psychiatric hospital 5 times and have not responded to any of the 20 different psychiatric drugs that I've been prescribed. I had to work part time for 4 years until a year ago when I was forced to stop work entirely. I've always been sick since childhood but in the last 5 years it has become unbearable and has cost me everything. The strange thing is there were periods when every symptom has gone into complete remission simultaneously. Looking back this coincides completely with when I go on a low carb diet to lose weight, which I've done five times (the first for weight loss the next 4 to feel well). The same happened again when I went on FODMAP diagnostic diet to try and work out what was causing my gut issues after being told I didn't have coeliac following a negative gut biopsy. In January I started the Autoimmune Protocol diet to try and control the antibodies that had caused Hashimoto's and yet again every symptom disappeared within ten days! I'm currently in complete remission and feeling better than I have in 10 years - I've even gone back to work and my psychiatrist has said she will soon reverse my bipolar diagnosis. The only genuine commonality between the periods on a weight loss diet, FODMAP and the Autoimmune Protocol diet is that all of them are 100% gluten free. I am well enough to actually start researching what's wrong with me (when sick I can't read) and I am trying to establish if the above symptoms could be attributable to coeliac disease. I've read through a number of medical research papers that show that there is a link but these are rare so I would welcome some insight if anyone has experienced similar. I'd love to hear from you. Are there any tests I can ask for (DNA profiling for example)? I had a positive ANA screen (speckled pattern) but this tested negative a week ago since starting the diet and the FODMAP diet result indicated 'wheat sensitivity' diagnosis but nothing more. Due to the severity of my symptoms I will never again eat gluten so any blood test or biopsy will be negative. My doctors are sadly quite clueless.
  3. I have had severe constant bloating for many years. I have diagnosed with celiac diseases about two months ago and have been gluten free since. My skin rashes and constant nausea have improved a little, but the bloating is much worse. Is this because of celiac? If so how long will it take for bloating to settle down? Is it because my stomach is inflamed? My stomach also gets full and bloated easily, but I am Always hungry. I constantly want to eat since I started eating gluten free.
  4. I've been struggling with a lot of symptoms for over 7 years now. I've gone on many wild goose chases to get a diagnoses, but I always seem to wind up with negative test results, or an answer that doesn't account for most of my symptoms. Most of my symptoms first started when I was in my sophomore year of high school (I am 23 years old now). I started to experience disassociation, brain fog, and fatigue first, shortly followed by visual snow. I developed tinnitus in both ears around this time also. Since then, none of these symptoms have alleviated; my visual snow and tinnitus have become a constant for me, though they are thankfully relatively easy to ignore. I've experienced headaches commonly throughout my life, but for years now they have become much more frequent. I used to rarely (if ever) experience tension headaches, but now I have tension headaches much more frequently than vascular ones. I also experience (thankfully rare) ocular migraines where I lose portions of my vision for 30 minutes to an hour in both eyes. I've become extremely sensitive to light and stimuli (especially visual and auditory). I've always been sensitive to loud noises and bright colours, but now I can hardly walk through a colourful, fluorescent-lit store without walking out feeling fatigued and in a fog. The enamel on my front teeth has been shot since I was a child, and I've always been prone to canker sores. I have very stubborn dark circles under my eyes, and rough, bumpy skin on my upper arms. My joints feel too stiff and sore for my age, and I have very painful periods (that may skip a month occasionally). My memory is poor, and I struggle with OCD, tourettes, anxiety, and depression. What lead me to look into celiac, however, was the development of gastrointestinal issues. I can't remember when these issues first started-- I think they've been slowly working into my system for years-- but they became much more pronounced over the last year or two. I feel bloated nearly all the time, and frequently have either diarrhea or constipation. I also have acid reflux, as well as frequent abdominal pain and discomfort. My diet is very heavy in foods that contain gluten, and I've noticed my gastrointestinal symptoms definitely worsen when I increase my intake of these foods. Just a couple of days ago, a pb&j sandwich and poptart were all that I ate in the evening; I went to sleep with abdominal discomfort, and woke up with much worse discomfort and diarrhea. Each flareup seems to be similarly marked by consuming gluten. I've had a CT scan of my head, several in-depth eye exams, tests for diabetes, iron and vitamin deficiencies, and high blood pressure. I've had an x-ray of my neck and spine, an MRI of my jaw (for TMJD), an EEG-- all came back negative, except for one that determined I have hypothyroidism and the MRI that showed a deformity in the right side of my jaw, neither of which account for most of my symptoms. I also had one single test for celiac (I believe it was the tTG test), which also came back negative. The negative test result I had for celiac has not convinced me that gluten isn't to blame for my issues, however. I feel that too many of my symptoms line up with celiac disease to not at least treat it as a high possibility. I've also read about the possibility of the test I had showing false negatives, which gives me some hope that my negative test result for celiac wasn't just another dead end. I'm not sure where to move from here, however. I truly feel that I have reasonable cause to suspect celiac, but I've also felt that way with many other tests that provided no answers. I wonder, though, if I should pursue more testing for celiac, or just try a gluten-free diet for a few months and see if it improves my symptoms. I am not interested in having an endoscopy; I feel that a positive blood test, or positive results from a gluten-free diet are all I want for answers (plus, sedatives and anesthesia give me wicked anxiety). I guess I'm making this forum for two reasons-- 1. I would like to know if people here that have been formally diagnosed with celiac feel that I have reason to suspect celiac based on my symptoms; 2. I would also like an opinion on trying the diet vs getting a diagnosis prior I'd also love a full list of tests that I should look into if the primary one came back negative Thank you to anyone that reads and/or replies to this, and sorry for how wordy this is ahhh
  5. So i am undiagnosed and have been having severe problems for about 9 months. Ive had stomach problems my whole life. i had a small part of my bowel removed when i was a newborn and had a colostomy bag for 6 months but recovered. I was always active as a child and teen but still had problems, but nothing like this. So now I'm 21 and one day i got really sick in a car and it all started from there! Got very dizzy and wanted to puke. But then i started to have abdominal pain, bloating and bad chest pain. I thought it was a bug and let it pass but it went on for weeks. Then i got constipation and started getting very fatigue and weak. Could barley got to work. One day at work i started having suck bad lower abdominal cramps that they wheeled me out on a cart because i could not walk. I went to the er that night after they went away but since then i have had a lot of symptoms. Mostly lower abdominal pain around my pelvis.( By the way I'm a 22 year old male) . But i have been having bad fatigue, arthritis in my fingers when i wake up, severe abdominal pain that only goes away on occasions, testicular tenderness mostly when I'm constipated, severe stress mostly because of my sickness, bad mouth ulcers, and I'm sure there is a lot of symptoms I'm missing but i have been to doctors and even had a colonoscopy which came back good but I've never been tested for celiac or crohns that i know of. Sometimes i really feel like i dying, the depression had led me to hate everything. I can't really enjoy my wife and kids anymore, can't go out anywhere and have fun because I'm always sick. Im going to see a new family doctor this thursday and try to get some test ran but does anybody have symptoms like me and does this sound like celiac? Help me please i just want my life back. Also i have recently gotten itchy bumps on my hands, wrists and inner forearms and on the right side of my neck( kinda like bug bites all over).
  6. Ok this is going to be a lot of symptoms, but here it goes. I got diagnosed with Celiacs at the end of December 2015. I went 100% gluten free and felt initially a lot better bc I wasn't sick with nausea and vomiting on the regular. I also had to get iron infusions to get my blood levels back to normal. It's now end of March. I haven't changed my diet much besides eliminating gluten, if anything I eat healthier...but I have always eaten healthy. I have gained 10lbs! What in the world?! Even pre-Celiacs before I was sick I never gained weight easily my entire life...so this seems crazy to me. Also my bowel habits drastically changed and I am irregular or if I am regular it's not a lot of poop (sorry TMI). I also have never had back acne before and got that, is this related to my diet change? I still get bloating and stomach cramps in the evenings ALOT. I initially felt better, but now I don't feel good just different symptoms than before my diagnosis. I have been trying to eat clean and add probiotics to be diet, drink Kombucha, I even made bone broth trying to heal my gut in the initial process of going gluten free. I also just started working out again. Anyone else struggle with this a couple months after diagnosis and going gluten free? I dunno what else to do.
  7. hello- I'm looking for help here! For the past 15 months my now 5 yr old has suffered from severe abdominal pain, bloating and diarrhea . It has gotten so severe in the past few months he has been hospitalized 3x needing an NG tube and rectal tube to decompress his intestines from all the air. At first we thought it was a constipation issue but he only ever had loose foul smelling stools.at his last hoapital discharge I was instructed to insert a rectal tube every 6 hours and flush with saline to keep his bowels from distending with air! We did that for 3 months straight?! What torture for my poor boy. And X-rays confirmed there was no blockage. He has had test after test , X-rays, MRI,CT, EGD and biopsy twice , colonoscopy, ultrasounds and even cystic fibrosis testing. Only thing that has shown up in blood work is anemia and elevated c-r protein. His GI dr is stumped ( even after conferring with colleagues cannot figure this out) and says she has never seen a kid so severe, even with celiac( although he has tested negative) . Now here's the interesting thing- I. Put him on a gluten-free diet after the testing was all done and within 2 weeks he started having somewhat formed BMs on his own with no laxatives or suppositories . His bloating disappeared and his behavior improved ( he is also mildly autistic) . So even though the dr was doubtful gluten could be a problem she is saying maybe it's an intolerance. Anyone have a kiddo with such a severe non- celiac intolerance?
  8. This is my story. If anyone could give me ideas, put in input, ANYTHING, it would be greatly appreactiated. I'm running out of hope. Bear with me, I know it's long but I just need to get this out to people who understand. My symptoms started December 7th 2013. They appeared out of the blue. One day I felt so blissfully healthy and the next day I was in horrible pain. It was like waking up into my new life. I'm only 17. Every day I'm suffering so badly from the constipation, the BLOATING, the gas, the pain. Nothing seems to help. December 27th I was diagnosed with Celiac Disease after bloodwork and a biopsy and was told that because my intestines were in pretty good shape considering, I would start to feel better almost instantly after going gluten free. That was 4 months ago and I don't feel any better in any little way! I'm not only gluten free, but dairy free and even grain free. I'm on an (almost) paleo diet and have been for 2 months with no change. I was told by doctor after doctor to just "give it time, you'll get better soon" until one day I was told "You have ibs and there's no cure." I'm so depressed because of this horrible illness! I was taken out of school to be homeschooled, I rarely go out, I don't go a day without crying. I'm not myself anymore. I used to have so much life... I used to have what I thought a perfect body (Yes, I was cocky.) Yea, that's gone now. I've lost so much weight I look sickly, but my stomach is constantly bloated. I used to have such a flat stomach and now I look 6 months pregnant even when I don't eat a single thing! Summer is coming up but it won't be any summer for me. I'm trying to figure out something else it can be, something else I can do. I refuse to believe this is the start of my new life. It appeared so upbrupty and for a reason! It was the Celiac Disease. So why am I not healing whatsoever? I'm not still eating gluten. I even got a bloodtest to be sure. I've been taking Rifxain for 2 weeks to see if it's SIBO but surprise, surprise there's still NO change. Before I found out I had Celiac Disease and became crazy about health and nutrition, I was the kind of person who ate ice crea every single day. I'd have doritos for breakfast and remained 100 pounds no matter what. I didn't even need to exercize. Now I do everyday but nothing helps. I look and feel like a whale. And not only is it ugly but it's painful. I used to do a lot of recreational drugs and drink a lot. I used to eat and act like someoe who's SO unhealthy but my body seemed perfectly healthy. I now have an extremely healthy diet and haven't even sipped a glass of wine in 4 months. But I feel and look horrible. It was supposed to be over at Gluten free. I feel WORSE than I did before. I'm on so many different supplements. Fish oil, L-Glutamine, Digestive Advantage Constipation Formula, Acidophilus probiotics, and I take digestive enzymes with every meal. What more can I do? What can make this all go away? If this is supposed to be the rest of my life I don't want to live. Is it ibs? Refractory Celiac? It doesn't make any sense!!!
  9. Hello, I'd love a little advice/information from people who probably know more about this than I do. Sorry for the slightly long post... I am 32 and female. The only real health problem I have had is endometriosis, which was diagnosed and treated in 2002 and I have had no real problems with since. I am generally very healthy. Last year, in May 2014, in began having some abdominal tenderness just above my belly button if the area was pressed (usually by my toddler's rather enthusiastic hugs!) and left-sided discomfort (waist level) at my back sort of radiating round to the side. I also felt quite full after eating only a little. My GP ordered an ultrasound, which was normal, and a whole range of blood tests, also all normal. Things continued and in September, my GP ordered a coeliac screen which came back positive. My tTGA was 15.3 (normal range 0-6.9) and endomysial antibodies were positive. At the end of November I had an endoscopy and biopsy (4 samples were taken), which came back negative for coeliac disease. In December I started experiencing problems with upper abdominal bloating and also constipation (sorry if tmi, but I could actually go four or five times a day, but just a couple of very tiny little pellets). I also began feeling lightheaded after eating and, with the exception of feeling hungry, felt so much better if I didn't eat or drink at all. So my GP repeated the coeliac screen to see if the first test was an anomaly. This time my tTGA was 35.7 (normal range 0-6.9) and endomysial antibodies were positive. My gastroenterologist (who discharged me back to my GP after the normal biopsy) said I categorically do not have coeliac disease because of the negative biopsy and to continue as normal (with no guidance as to what was causing or would help my current symptoms). My GP agrees that I don't have coeliac disease. So, my question: is there anything else that can cause a positive result on a tTGA blood test other than coeliac disease? My GP and the gastroenterologist both said false positives can occur. My GP suggested I trial a gluten-free diet, but I'm concerned this is a very strict diet and unneccesary if I don't have coeliac disease and will delay/prevent an accurate diagnosis if I do. I have a two year old son, so if I do have coeliac diease, I understand he should be tested? I don't know where to go with this now. Prior to all this starting last year, I had never even heard of coeliac disease. I also don't know if these blood tests are clouding the issue of what is actually causing my symptoms if they really are just false positives... I would really appreciate any advice or insight... Many thanks in advance!
  10. So after being strict paleo for almost 6 months after my celiac diagnosis with no relief, I finally found my answer I took a breath test for small intestinal bacterial overgrowth today and it cmd out very, very positive. The doctor was able to tell me it was positive not even half way through the test! There's a very large amount of methane, which explains my severe bloating, gas, and constipation that's been worsening every day since going gluten free. I was so happy to have an answer I burst into tears, while simultaneously cracking up and hugging the nurse who told me it was positive (whom I'd just met that hour…) Needless to say, this was the best news I've ever heard. I finally get to have a life again! I'll get to go out, eat normal amounts of food, wear tighter clothes again without having to worry about my swollen gut showing lol. I'm pretty much ecstatic!!!(: Now my questions are….well, what do I do now? Is there anyone else who experienced this? Not getting better after going gluten free then finding out SIBO's the culprit? My doctor prescribed me Rifaximin twice a day for 10 days and then Neomycin twice a day for another 10 days afterwards. But she also mentioned that a large amount of methane as opposed to hydrogen in the intestine is harder to treat and less common /: (with my luck) This scares me and makes me feel like I should be extra careful. Is there anything else to do to kill off the bacteria? What probiotics would be good for helping to treat sibo? I already take Acidophilus but is there one that would work better? WHat about diet? I know the bacteria feeds of sugar and carbs? What sort of diet it recommended when treating SIBO, if there is any? And most importantly.. did this simple fix, the antibiotic, cure your ongoing symptoms? I feel like in a way it's too good to be true. I've been living in unbearable constant pain from the time I wake up till I go to bed for so long I feel like I've grown accustomed to it! Could this really be the end? Support is desperately needed here. Thanks everyone!
  11. Hello everyone! I was recently diagnosed with Celiac's about 2 weeks ago after FINALLY finding a doctor who's more into treating causes and healing my body instead of just stopping into the room for 5 minutes and giving me some random medication. I was diagnosed with Crohn's Disease at age 15 (am now 24) and my new doctor thinks it may even have been the wrong diagnosis and that this whole time, it could have been a severe gluten allergy causing all my issues. I just had a couple of questions, and I would love any help/encouragement/answers because it's been a very stressful and hard time and I'm at the end of my rope. 1) I've been eating gluten free for about 3 weeks now and I'm noticing that my stomach is "harder" somehow. I guess you could call it bloating, but my stomach doesn't seem "puffier" per se - it just feels tougher and sticks out more (and it's noticeable because I'm pretty thin). I would have thought that my stomach would ben flattening since going gluten free. Does it just take a long time? 2) I've had a lot of shortness of breath and a hard time breathing. It feels like I can never get enough air and I'm always trying to purposefully yawn to get more air in my systems. I've also had a little pain in my upper right side, around my ribs, when I try to breathe in deeply. Has anyone experienced anything like that? 3) Anxiety: I started getting HORRIBLE anxiety attacks about 4 months ago. It's pretty much developed into constant panic and anxiety attacks and. Always feeling depressed, anxiety, moody, worried, and scared for no reason at all. I've always been an extremely happy, optimistic, outgoing person, so it's been really hard for me. I thought that going gluten free would help me immediately, but it's been an extremely slow process and the anxiety and fear is still pretty consistent. Is it normal that it could take me a longer time to start feeling less anxious? I don't want to take any medications for it and am trying to fix my gut instead - but I need to know that it's going to work eventually and be worth it, because I feel like I'm drowning in my own head sometimes. So, lots of questions, but everyone on these forums seems very helpful and encouraging, and I really just need some reassurance! Thank you!!!
  12. Hello! I've been browsing your forum and I've found a lot of the other discussions very helpful. My situation is that I have a 6 year old daughter who I think has food allergies or intolerances, but her doctor isn't concerned with the symptoms she has and doesn't want to refer us for further testing. I specifically wonder about celiac disease, but also about food allergies. I'll try to keep this brief! The symptoms she has that worry me are frequent abdominal pain, bloating, frequent very smelly gas, weak tooth enamel, rashes and general itchy skin, and bad body odour. She also sometimes throws up when she has tummy aches, but her bowel movements are pretty normal. The pain is in the centre of her stomach just above the belly button and sometimes to the left of that area. Just today she told me at breakfast time that she had a tummy ache, but didn't seem upset by it so I sent her to school as normal. When I picked her up in the afternoon she was crouched on the ground crying and her teacher said that she'd complained of a tummy ache after lunch, then it had seemed to go away, but got worse late in the afternoon just before the end of school. I don't think she was constipated (which is what our doctor always suggests when I ask about stomach pain, even though Sofie has BMs every day). She often has a rounded tummy. Sometimes the tummy aches are accompanied by vomiting, but not very often. She did have an episode like that last weekend. We've never been able to tie it to a specific food that she has eaten. When I took Sofie to the doctor about pain + vomiting, she said it was likely a virus, but none of the rest of us got sick (and stomach flu almost always ends up getting passed around our family when we do get it). Sofie has had a lot of dental work, including several root canals and crowns and many cavities. I have 2 other children (one older, one younger) and neither has had any dental problems. I actually started wondering about celiac when I was trying to figure out why her tooth enamel was so weak. I looked it up online and one of the first things that came up was celiac disease. She sometimes complains about itchy skin and used to get bouts of hives for no apparent reason though that hasn't happened much in the last year. She gets a red, bumpy rash on her cheeks sometimes which the doctor thought was eczema, but I'm not convinced because my 8 year old has eczema all over his legs and it looks very different. What else was there? Oh, the body odour. Last year Sofie suddenly started to smell like a teenager. She was only 5 though. It is mostly under her arms and it's a really strong smell. I eventually had to start using a natural deodorant, which does help, but isn't she just too young for this? Her doctor said it's normal in a minority of kids. The only thing she was concerned about was premature puberty, but she has no other signs of that. She also has bad breath quite a lot despite always brushing and flossing (we're very careful about that because of her dental problems). What Sofie DOESN'T have is any problems with growth (height and weight are both 85th percentile right now), only occasionally gets diarrhea, doesn't seem constipated... I have an autoimmune disease myself (I have something similar to lupus called UCTD and also Psoriatic Arthritis, which are both autoimmune). We have Hashimoto's and type 1 diabetes in our family too, but no one with celiac. I had the blood test for celiac run because many of my AI disease symptoms could be celiac symptoms as well: neuropathy, muscle and joint pain, GERD, diarrhea, migraines, other bowel issues (like fissures), fatigue, low ferritin, etc. But the test was negative. Sorry this is so long! What I really wanted to ask was: Do you think I should push harder for a GI referral and an allergist referral? Could my daughter's symptoms be consistent with celiac? I know that there are other allergies/intolerances that could account for them too. I was interested in doing a trial of an anti-inflammatory diet for myself to see if it improved my own disease symptoms. I would remove dairy, gluten, and refined sugar. I thought maybe the whole family would do it together as Sofie has these issues and my 8 year old has eczema and frequent ear infections which I've heard may improve on a gluten and dairy free diet. He also has Asperger's and I know that it's quite common for parents to say that some of the issues that come along with that improve when gluten and casein are removed. My husband and youngest child have no medical issues, but they're willing to come along for the ride because it would be easier for the rest of us. I do know that testing wouldn't be accurate if gluten was already out of our diets, so I'm just wondering whether to push for testing first. Thanks so much for any feedback or thoughts! Torontomom
  13. Hi there, First post from me. I have been gluten-free for about four years now, I am also lactose intolerant and incredibly carful. But I just can't get it right, to be honest I could burst into tears just thinking about it and typing. I have spent more time feeling unwell than well for all my gluten-free time and the year I spent being diagnosed. I feel heavy, like my stomach is made of lead, I feel constantly bloated to the point that I am uncomfortable to leave the house, I feel so low and I don't know how to be any more compliant. My reactions last around two weeks and I feel emotional and depressed every time, I exercise a lot and training is really important to me so every time that I feel bloated (my whole body swells and I retain water under my skin everywhere) I just can't cope with it. The doctors don't help, I have been tested for everything and I don't know which way to turn, I just need to feel well!!!! and for my belly to feel normal again! Any help, advise, suggestions greatly appreciated as I want to feel well more than anything, Thank you, Imari
  14. Hi everyone--just joined the community I've been on a strict gluten-free diet since October (my diagnosis), but I still have a huge bloated belly. It looks very strange on me because I have a small frame, and it makes me look like I'm about 7 months pregnant. I have also cut out oats, dairy (been vegan for 2 years), and most recently nuts. I already had probiotics in the Vega1 shake I drink each morning, but last week I also added a probiotic supplement as well. Does anyone have any advice on how to shrink down the gluten baby belly? Is it possible--(aka does it just take time)? It's just been 6 months since I've cut out gluten entirely, so I had hoped it would be gone by now. Thank you all in advance
  15. Hi all, Just looking for a bit of knowledge and/or confirmation from you experienced folks! I've had a lifelong reaction to garlic, but didn't realise I was actually intolerant to garlic until I was mid teens. I then didn't realise that all of the onion family affect me very badly until I was 27! By this point my symptoms (extreme bloating, acid reflux, mouth ulcers, abdominal pain, IBS) were near constant, my reaction to the onion family had gotten worse and worse over time. I had also developed GERD so then had to exclude a whole array of other foods from my diet. (tomatoes, peppers, alcohol, citrus or anything acidic, etc) I have a family history of gallbladder problems, IBS and Crohn's disease. Although neither of these things are strongly suspected in me. I've had numerous blood tests for a variety of things, including calprotectin (negative) and the blood test for celiacs (also negative). I am not anaemic either. I was on Omaprazole for 12 months (worked a bit) and Ranitidine for 6 months (Not very good at all...) After waiting 18 months!!! I finally had a gastroscopy yesterday... Apparently after 17hrs fasting my stomach was sloshing full of acid. My oesophagus is normal, my stomach looked normal, my stomach biopsy showed me as negative for H. pylori. The nurse then took a look at my duodenum before taking two biopsies, she immediately noted that it was smooth and afterwards gave me a gluten free diet sheet and told me that she thinks I am an asymptomatic celiac and my other intolerances would likely clear up over time if I go gluten free... Soooo... sound familiar to anyone? I felt immediately scared that I would have to struggle to eat even more than ever before. But a colleague said this morning that I'd be swapping a relatively rare digestive problem for one that is almost "mainstream" and catered for. Not sure how to feel basically.
  16. i have a question.. ive been diagnosed 14 years 14 years gluten-free i just started having a new symptom been to 16 drs. noone knows but looked on this forum and it appears it could be strictures??? could i have more information on them can they be inflamed from certain foods then feel fine for a month? im so confused thanks
  17. I have Hashimoto's thyroiditis and was recently diagnosed with celiac and colitis. I've been on a gluten free diet for a month. My D and brain fog are much better, but my belly still gets big during the day. I wake up with a flat tummy, and by bedtime I look 6 months pregnant. This is very frustrating. I eat a healthy, low-cal diet and exercise, but I look so fat. Any suggestions?
  18. Is this part of recovery? I keep thinking I am reacting to foods. I spend a day obviously bloated and feel sick to my stomach. I have a burning sensation in my gut. Sometimes I get cramping and chills. The next day I am somewhat better and the next I feel better than ever. I have contacted my physician about this. She examined me during an attack. The "feeling better than ever part" makes me wonder if I am cleansing. I think I did go through some of this after 8 months gluten-free and my tummy flattened some. D
  19. I have not been tested for Celiac disease yet. But I decided to start a new topic about some of the symptoms I have so that I can learn. Not sure if this is a symptom of Celiac or not but it's something that is an annoyance to me. Tinging. I get tingling in my left upper thigh mostly. It happened while I was sitting down eating my pasta and it happens a lot when I lay down. I also get tingling in my hands, but not as frequent as the thigh tingling has been.
  20. Hello everyone. Not sure if this is the right place to introduce myself. I am a 31 year old woman from New Hampshire and am here to learn more about Celiac Disease. I have had several symptoms for years now and have had no answers from drs. I lost faith in them a long time ago. I have tried finding the cause of my issues in the past, but I get close to test date and then the dr says something that makes me ashamed of my symptoms. The last incidence was her saying "They won't find anything. I know you, you are just nervous. There's nothing wrong". I have been mistreated emotionally by drs, so I have shied away. I know that was a bad thing to do but that's what my reasoning was. Meanwhile I am 98 lbs, have issues with my periods being too short or missing them or having too many. I have gotten rashes on my skin that look like purpula, except mine are confined to one patch on my legs or arms. I may have gotten this rash in other places and have not noticed. I also get these tiny red dots on my chest area mostly. Neither of these things itch or cause pain. I have had heart palpitations before and have had a stress test and all seems ok with my heart. I am a smoker and I know that is bad, but I get some strange things happen to me where as other smokers I know in my immediate life do not. Also, I get bloated after I eat. I know some bloating is normal but mine tummy just pops out too much at times. I had a sandwich and canned soup today and that's when I noticed it. I also have itchy dry skin that is very annoying to me. I have had a couple drs suggest endometriosis to me as a reason for my cysts and funny periods. It is written in my medical chart that I am anorexic and have anxiety. I do not get any more anxious than anyone else. I am just frustrated. Although I have had some unexplained anxiety attacks, some big some small...I have not had a huge one in a long time though. My living situation is better now. But I do fee anxious for no apparent reason at times. As far as the anorexia goes, I am not anorexic. I will eat when I have the money to buy food. But eating can be difficult at times. Right now I feel full and heavy even though I haven't eaten much today. I had a BM today but it was small and difficult to go. Sometimes I feel like I really need to go and nothing ever happens. That's all I will say for now because this is getting long. I am seeing a general dr on the 13th and I am nervous that this will be one more dr who doesn't listen to me. I want the appropriate blood tests to check for Celiac to start, then an endoscopy if need be. What blood tests are needed to check for this? I want to be very very clear with this dr. It is the clinic and they are not always good about things but it's all I have for now. So I want to be ready and prepared with a list of my symptoms and the things I would like to see happen. I am just afraid of being pushed to the side, of being told I am jut an anxious anorexic. I am not anorexic. I am anxious because I get treated poorly by lots of drs. If you have read all of this then I thank you. And it's nice to meet you all.
  21. I am going to my doctor as soon as he is back off holiday but I would like to know if this could possibly be Celiac, if anyone can help? Every now and again I would always seem to get an upset stomach. All my life I've suffered from constipation, only going once a week, twice if lucky lol. I also have chronic fatigue, find it hard to concentrate/suffer from brain fog. A few weeks ago things started to get really bad, I bloated so much and had stomach pains, cramps, gas, lack of appetite and feeling full quickly when eating, I also felt pressure in the middle of my stomach a while after eating. The bloating never stayed constant, it went down a while and came back. About a week passed and the bloating and other symptoms stayed although my appetite increased slightly. The symptoms were the same up until this week were I have felt all the same symptoms other than lack of appetite, this time I've been feeling so hungry I eat more than ever. I went on a diet in November and was losing 4lbs a week and then gaining 2lbs or so. The only thing that has changed is that I am eating more pasta, noodles and wholemeal bread than ever before. I only ever have a small amount of milk in a coffee as the slightest bit too much starts to make me feel nauseous and I don't eat other dairy products either. I also had a sharp pain last week on my left side near my belly button, it feels slightly tender now but I havn't had the same feeling since. Also I have dry skin mainly on arms and scratches don't seem to heal I end up with scars from small things. Also really easily irritated lately and my family have noticed it too. None of my immediate family seem to have these problems other than me, there has also not been anyone in the family diagnosed with Celiac. Thanks for any help.
  22. Hi I am wondering if anyone knows if potatoes can cause bloating? I ate a lot of potatoes today and my stomach feels like a baloon again. I think I consumed about 8 potatoes. I ate tortillas with potatoes for lunch and a soup with cauliflower and potatoes for dinner. I am about 5,5 months into GFD, still positive bloodwork.
  23. Have any of you tried this and has it helped? I have read such conflicting information about it. I feel that it would be very difficult for me to follow but at this point I'm willing to try anything. I know that I am gluten free and free of cross contamination. I am not having any of the brain fog symptoms or other symptoms that I get and my antibody levels are almost at zero. However, I am struggling so much with continued bloating, gas, horrible heartburn, stomach pains, and constipation that lasts 7-10 days before one miserable long morning of it all finally coming out. Over and over. These symptoms have all been getting worse over the past 6 months (been gluten free for almost two years) and I wonder if its just my really poor processed food diet and cleaning it up a bit will help or if I need to do something really drastic like the SCD diet. Any thoughts? * A side note, I have spent the past two years eliminating and testing other intolerances. I eliminated eggs which I absolutely cannot have. I eliminated peanuts but it now seems that the symptoms I thought were being caused by peanuts are back full force even though I have avoided them like the plague. I don't seem to have any different reaction whether I eat dairy or not but the only dairy I eat is cheddar cheese. I have been fully tested for food allergies and have no reactions to any. I believe I eat too much sugar. I am underweight and struggling daily with my self image and self esteem because I feel that I will never be able to gain weight and I fear giving up the few things that I feel are KEEPING some weight on me (gluten free pastas, soda, candy, potatoes).
  24. I've been suffering with tummy troubles for about 18 months now. I get severe bloating, gas, and feeling of fullness after eating only a small amount, no "C" or "D", or nausea though. I wake in the morning and feel OK but a few hours after my first meal is when all the symptoms start. By the time I'm in bed for the night, I am so bloated and gassy that I have laid there wondering if it's possible for your stomach to explode from to much gas in it, that's how bad it gets. So about a month ago I went to see the doctor and described my symptoms, she was unsure what my condition was and suggested I try a low-fructose diet, and ran some test. I went on the low fructose diet and cut out a bunch of gluten as well (wheat has the fructans) and felt about 70% better. After 2 weeks I returned to the doctor and told her I felt about 70% better but I wanted a test to make sure it was fructose (because that is a hard diet to be on). She referred me to a GI doctor (still waiting for that appointment), and ran more test for food allergies and Celiac disease. That was two weeks ago. About a week ago, I decided maybe it was just gluten and not the fructose. So I've tried to cut out all gluten from my diet and did not worry about fructose. I started feeling about 85% better. I was thinking great, I can handle a gluten free diet (better then a fructose free diet), and if it is Celiac Disease, at least I will have a better understanding about what is going on. I just got the call from the doctors office and all tests are negative! No food allergies, negative for Celiac disease, no closer to an answer about what is going on with my tummy. Could it be a false negative? Is there any other conditions it might be? I am so lost and frustrated!!
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