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  1. Celiac.com 11/16/2018 - The best part of being diagnosed with celiac disease is finding out what you or your child has so that you can get back in control and in a position to do something about it. This article is dedicated to “getting back to basics.” Many of you will already be familiar with these topics. Still, every now and then we need to be reminded—for our well being or the well being of our loved ones—we must not take for granted the everyday food items we grab from the shelves or the medications we must take. We must always remember to read labels, as ingredients in products change constantly. You need to remember that even though you may experience a reaction from a “gluten-free product,” it doesn’t necessarily mean that it was contaminated with gluten. You might be having a reaction from something you ate within the 48 hours prior to becoming ill; having an allergic reaction; or you may just be sick. Keep in mind that a resource book that was once full of current information may no longer be accurate. Check the date it was printed, who compiled the information, and look to see if there is a more current version. Here are some suggestions to help make being gluten-free easier: Understand that it is sometimes difficult for family members to acknowledge that your diagnosis of celiac disease is an inherited autoimmune disease. Parents can have a problem accepting that they may have been the one who gave their child the disease. Other family members can be afraid that they too have the disease. Spouses may be angry that your lifestyle must change—or simply fear the unknown. Be honest with your friends. Hopefully, they will want to know more about celiac disease and what kinds of food you can and can’t have. Find a dessert that you get compliments on and volunteer to bring it when you visit a friend’s house for dinner, or to share it at a school or social function. When dining at a friend’s house, ask what will be served and plan to bring something similar for yourself. Never count on the host providing a gluten-free meal unless they offer. If you are not comfortable with bringing something, eat before you go. You can also choose from the meal what is appropriate. This applies to children as well. If they are newly diagnosed and embarrassed, get them a treat before or after the function and let them know you are proud of them for not eating something that contains gluten. Knowledge is power. Learn as much as you can from a qualified and up-to-date source, i.e. National support groups, doctors, and dietitians. Be wary of Internet chat rooms about celiac disease. The amount of information is overwhelming and is not always accurate, which can cause more frustration. There is, however, a lot of useful information, particularly Internet sites with recipes and food preparations. Volunteer. By focusing on other people and their needs, you will, in time, realize how fortunate you are that you have celiac disease and not something worse. A version of this article originally appeared in the Winter 2004 edition of the Celiac Disease Foundation Newsletter. The Celiac Disease Foundation is a national celiac disease support group that is based in Studio City, CA. For more information visit their Web site: www.celiac.org.
  2. I wanted to share what has cleared up my DH rash within a matter of days -- a histamine free diet. (gluten free too of course). You can search online for various diet plans for specific foods to avoid and what to eat. I had been gluten free for over a year, then ate what I thought was custard, only to realize to late it contained cake. That brought on the worst DH I'd ever experienced and nothing offered even the slightest relief. I work in the field of holistic health & wellness and am very much against taking powerful antibiotics. Dapsone, also prescribed for leprosy and HIV patients, didn't make sense to me. I'm a certified Nutritional Therapist, my first thought was the "leaky gut" diet plan, but my rash was still flaring like crazy. (The "leaky gut" foods are nearly all high histamine foods.) Then I started to connect the dots-- rash, histamine response, etc and realized the histamine free diet made sense. Which meant everything I ate that I *thought* was healthy & healing was causing my elevated histamine levels to go even crazier. (I've always eaten clean--my daily diet was about avocados, yogurt, bananas, lentils, cheese, sauerkraut, oranges, tomatoes, etc--- all high histamine-impacting foods!!). When I replaced the histamine containing, histamine releasing and DAO blocking foods, I felt relief within 24 hours. In 48 hours the angry redness had nearly disappeared. On day 3, I must have said 100 times "OMG I'm not itching!!". I had been taking supplements (L-glutamine, quercetin, caprylic acid and PABA) which I know are helping my gut, but the histamine-free diet instantly helped the horrible DH. I wanted to test this and I ate 1/2 a banana (a histamine food) and my skin felt prickly within minutes. I hope this offers someone some relief. If you're doing everything right yet not finding relief, consider the histamine-free diet.
  3. Hello everyone, i will try my best to keep this short but it may not work that way as it’s a long ish story. For about a year I’ve been having some awful stomach issues, diarrhea mostly and weight loss. I had an elevated calprotectin but blood work was normal. I had a colonoscopy, they found some inflammation near the rectum but they gave me a follow up for months later and no one seemed all that concerned, I was told it went well and that I was fine. Finally I was sent for blood work to determine if I have a gluten allergy. I got a call and was told that based on my blood work they want to do an endoscopy to confirm a Celiac diagnosis. I’m an emetphobe (I have an extreme phobia of vomiting which I’ve been in therapy for my whole life) so naturally I decided to forego the endoscopy and just go gluten free. I also had read that the blood work tends to be fairly indicative of a gluten allergy and that endoscopies can produce false negatives. Either way 2 months later here I am, totally gluten free but unsure if I’m improving. I have good days and I have bad days and because I started taking Imodium every day and haven’t been able to stop without experiencing withdrawal (which apparently happens since it’s an opiate...I was clueless to this) I literally don’t know how I’m doing, I ont have diarrhea anymore but I’m taking an anti diarrheal so who knows. The people around me are telling me I seem better (more energized, sick less often, generally happier). As someone who struggles with a lot of mental health issues (depression, health phobias, anxiety) I honestly can’t tell. I’m still experiencing issues with going to the bathroom. Sometimes my stool is mucousy or seems to be full of undigested food. I’m not gaining weight or losing it (at least). On the other hand I I have days where I feel very well. I’ve continued to consume dairy, soy and really everything else. I guess I’m just looking for some advice, I’m so tired of feeling sick, I don’t feel like the person I used to be and I don’t feel like I have the support of my doctors or really any resources for this. I’m happy to never consume gluten again if it means I’ll feel generally well. Also, how long should it normally take for me to feel well again on the gluten free diet? If anyone has any tips, personal stories of success or really any insight for me that would be immensely helpful. Id also like to mention so you guys have all the info that some of my initial symptoms included headaches (often), mouth sores (canker sores), more hair coming out in the shower (I thought I was crazy but seriously I was losing hair), skin issues, and just a general malaise as well as bloating, gas and nausea. Thank you you so much in advance and sorry for the kinda gross information I shared. Regards, Kathryn.
  4. Hi, I’m new to this site so I don’t know if this is the right place for this. However, on Sunday I believe I was glutened (this was the only time I ate something out of the ordinary) it is now Friday night and I’m still having stomach cramps at random intervals during the day and bouts of D at night. I have gluten-free for nearly 3 years and I have never had a reaction this severe. I’ve stuck to liquids, no caffeine or carbonated drinks. Only dry food and cooked rice, veg and potatoes. I’ve had baths, napped, gotten early nights, drunk aloe Vera water, taken paracetamol, peppermint tea, hot water and lemon and I’m still suffering. Is there anything else I can possibly do?! I live on my own in a foreign country away from all my family and I’m really starting to get fed up and distressed by the situation. I’ve had to cancel plans with friends and miss out on so much because of this. I’ve lost a considerable amount of weight already and quite frankly I’m scared. Please help, thank you in advance Zoe :)
  5. Celiac.com 11/24/2014 - Following a strict gluten-free diet is the only way to treat celiac disease. However, researchers have been lacking clear agreement on how and when to assess gluten-free dietary adherence in celiac patients or how to determine its effectiveness on villous atrophy. To address this reality, a team of researches conducted a prospective study to determine patient adherence to a gluten-free diet, and its effect on histological recovery after 1-year of gluten-free diet. The research team included G. Galli, G. Esposito, E. Lahner, E. Pilozzi, V. D. Corleto, E. Di Giulio, M. A. Aloe Spiriti, and B. Annibale. They are variously affiliated with the Department of Digestive and Liver Disease, the Department of Haematology, the Department of Pathology, and the Department of Digestive Endoscopy at Sant'Andrea Hospital Sapienza University Rome in Rome, Italy, and with the Centro Ricerche S. Pietro, Ospedale S. Pietro in Rome, Italy. Between 2009 and 2012, the researchers enrolled 65 consecutive newly-diagnosed adult patients (median age 38 years, 18–70) with biopsy-proven atrophic celiac disease. The researchers assessed patients after one year of gluten-free diet, using duodenal histology, serological assays, symptom reports and a dietary interview based on a validated questionnaire. They defined complete histological recovery as the absence of villous atrophy and ≤30/100 intraepithelial lymphocytes. The team found that 81.5% of patients showed adequate gluten-free diet adherence (ADA), whereas 18.5% had inadequate adherence (IADA). Overall, 66% of ADA patients achieved complete histological recovery, but no IADA patients recovered (P < 0.00001). Interestingly, ADA patients who achieved complete histological recovery showed about the same antibody seroconversion and symptoms as those who achieved partial histological recovery with P = 0.309 and P = 0.197, respectively. Multivariate analysis showed that, for ADA patients with incomplete histological recovery, Marsh 3C was still a risk factor (OR 8.74, 95% CI: 1.87–40.83). This study shows that 66% of adult celiac patients who successfully follow a gluten-free diet can make a complete histological recovery after 1-year. However, patients with severe histological damage at diagnosis who successfully follow a gluten-free diet remain at risk for incomplete histological recovery 1 year later. Lastly, patients who do not follow a gluten-free diet have no hope of making a full histological recovery. For clinicians and doctors, this data should serve as a guideline for determining gluten-free diet adherence in celiac patients, and determining the level of patient recovery. For celiac patients, the data should serve to demonstrate the importance of following a strict gluten-free diet. Source: Alimentary Pharmacology & Therapeutics 2014; 40(6):639-647.
  6. Hi all! I'm new to the community, and would love to hear about what I can expect as I enter a new gluten-free life and begin recovery. I understand that everybody's experiences are very different, but I'm interested in hearing a range of experiences. For those of you that had lived a gluten-filled life until diagnosis, what was your experience when you started a true gluten-free diet for the first time in your life? The bads and the goods? Thanks for sharing your stories with me! I'm excited to (hopefully) start recovering and enjoy a life of energy and happiness and less pain!
  7. I was diagnosed 2 yrs ago. I have been gluten-free since, through these 2 yrs I have had minor issues with gluten through what I believe has been cross contamination. 2 days ago I had one chicken wing and the after it was hit wrenching stomach cramps, shaky, cold and clamy, lot's of bathroom trips and throwing up. What I wasn't expecting was the joint pain and body aches. The foggy brain is awful, I am not sure what is normal because this is my first serious gluten poisoning experince. It is day 3 and I still have diarrhea and feel like throwing up, and feel shaky and felt like I was going to faint at one point, also I haven't eaten other 1 apple and some water. The worst part of this is that I have 2 kids and my husband is not supportive he thinks I need to force my self to eat get out of bed and get over it like you would a cold or a flu. I am so tired and I am not craving food, is this normal? And does anyone else deal with non supportive family members who don't get how huge and serious this is????
  8. We are on day 6 of a gluten free challenge to diagnose an obvious case of inherited celiacs from my newly diagnosed DH. Yesterday my 20 month old had his first solid poo in his life. We sat there and stared at it with excitement! Of course this morning it was mushy again, but we have hope moving forward during this time of healing. I planned to breastfeed to the full recommendation of 24 months old and then wean (I, too, am now strictly gluten-free to not pass any on to him). My question is: does anyone know if breastmilk can help speed healing? Is there a typical amount of time that toddler healing takes? I’m willing to continue nursing through the entire healing process beyond 24 months old if it helps. However, I’m terrified of doubling the risk of his being “gluttened” by him being exposed to my diet too. Balancing act. BUT the benefits may outweigh the risks - and if they do I’ll keep breastfeeding the toddler for the foreseeable future. If they don’t then I need to sit back and analyze the best approach for best healing.
  9. Celiac.com 03/14/2017 - Recent studies of adult celiacs have suggested that complete, not just partial, mucosal recovery and healing is possible, but, in many cases, may take longer than is currently understood. Recently Dr. Hugh James Freeman of the Department of Medicine, Gastroenterology, University of British Columbia, Vancouver, BC, Canada, conducted a study to assess healing time in celiac patients. In this study, 182 patients (60 males, 122 females) referred for evaluation of symptoms, including diarrhea and weight loss, were selected only if initial biopsies showed characteristic inflammatory changes with severe architectural disturbance. All patients were treated with a strict gluten-free diet, and diet compliance was regularly monitored. Up to 90% or more of patients showed a complete mucosal response or healing, many within 6 months. However, most patients required up to 2 years for full healing and recovery to take place in the gut. In this evaluation, women in each of 4 different age ranges showed better mucosal response and healing than men, while elderly celiacs had lower rates overall. Such factors should be considered before labeling a patient with "non-responsive" disease. However, celiacs who are diagnosed later, start a gluten-free diet later, and who have inflammatory changes with persistent gut damage may be at increased risk for a later small bowel complication, including lymphoma. The overall good news here is that full mucosal healing can and does occur in most people with celiac disease. Some people may take longer to heal, but the evidence shows that most do eventually heal. Source: International Journal of Celiac Disease, 2017, Vol. 5, No. 1, xx. DOI:10.12691/ijcd-5-1-4
  10. recently my mom has been having very swollen feet. she is nearly a year into recovery and being gluten free. she is taking all her vitamins. please help me
  11. My wife is partway throigh her second week of Post-Exposure suffering, after having gone 2.5 years without an episode. In the past, she's dealt with the abdominal cramps by not eating for the first couple of days, on the belief that eating would exacerbate and prolong the inflammation that leads to the cramping, and perhaps do more damage. This time, though, the symptoms are sticking around longer, so prolonged Fasting is not really an option. She can get some relief from Bentyl (anti-spasmodic), but still isn't sure whether eating will aggravate the inflammation or cause damage. As usual, seeking legitimate medical advice on this subject has been less than fruitful. Do any of you good people have relevant experiences/thoughts?
  12. I've been eating gluten free for just over a year now after being diagnosed with celiac disease and T1 diabetes. I had just started to feel "normal" right around the 1 year mark, meaning I felt little to no pain and my stool didn't seem too out of the ordinary. Yay, finally some healing! However, the past few days I've started to feel that pain after eating, and I don't know if this is because I recently ate something contaminated and my body is healing from, or if something I'm eating is too hard to digest, or if I'm still just healing from the damage done 1 year ago!! It seems like there are so many factors when it comes to keeping gluten out of my food in my shared household (did I wash my hands? what if my soap has gluten in it? was the plate/utensil clean and not contaminated? did one of my family members accidentally put their glutened hand in my bag of chips?) and even then, what if the issue is within the food I'm eating itself? I find myself almost paranoid and feeling like no matter how many times the food package says "gluten free", my stomach is going to hurt from eating it. Does anyone else feel this way? I feel like it might be I'm eating too many processed things made with food that's hard to digest, but I don't want to limit my diet any further, though I will cut back. I was just so hopeful during those couple of weeks I was having no symptoms that I was actually finally healing!! But now I'm back to the pain. It's been putting me down pretty hard and I've been neglecting my blood sugars and insulin because of it, so that's not helping. Does anyone have any suggestions to how I can figure out what I'm eating that's hurting me? Should I catalog everything I eat and record my reactions to it? Will this pain just go away in time and this is a part of healing from mini-glutenings I get from accidental contamination? Thank you for your help. I definitely feel a LOT better than I did when I was eating gluten, but it's so frustrating to still be in pain after eating gluten free for what feels like a long time.
  13. 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.
  14. 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
  15. Hi, I posted a while back and my symptoms have been so much better since I started on the Dr Fasano Gluten Cross Contamination Elimination Diet. Although the dermatologist said he wouldn't recommend I reintroduce gluten after five years of being gluten free because of the severity of my reactions and so couldn't diagnose whether or not I have DH, I wasn't reacting so strongly to trace amounts of gluten in my environment, so I was happy and well, getting stronger by the day. Then... my reactions started to increase. I was getting sick, but weirdly only on Tuesdays and Thursdays. It started off mild and I thought I just needed to take a break, open the window or sit outside for a while but that made me SO much worse. I started to realise that 2 hours 45 minutes after sitting outside I would get sick (this is how long it takes for gluten to hit me EVERY time). There is a building site for a huge building just feet away from my window and their work with cement and plaster had started six weeks ago, just when my reactions started coming back. In the last couple of weeks the head fog and feelings of unease and dread come and go, along with stomach symptoms. My skin problems are fairly mild at the moment which is a shame because they would be a good, visible way to get verification. I feel very alone with the symptoms. Whenever the dread and head fog came on in the past, I would enquire about whatever food I had eaten 2 hours and 45 minutes previously and someone would confirm they made a mistake and included gluten, so I learned what my symptoms are - but telling that to my doctor? I think he'll think I'm a nut, and what about disclosing that I think my reactions at work are gluten related? Talking about airborne gluten? I can't work in that environment - it knocks me out for 3 - 4 days at a time and I don't really feel right now, a week after my last exposure but I'm not sure whether to keep quiet about the reactions to the building site being really similar to my gluten reactions. I was doing so well I have agreed with work that I will go back and test my reaction on Thursday - dreading it! And to top it off, I am starting in a new job next week. I will turn up stuck in a total head fog, unable to function! Based on previous experience, it will take one to two months to get back to normality. Any sympathy or related experiences welcome.
  16. Celiac.com 01/23/2017 - It makes some kind of sense that kids with celiac disease who follow a gluten-free diet will recover, their guts will normalize, and their levels of IgA tissue transglutaminase antibodies would drop to reflect this change; whereas high antibodies likely mean no recovery, right? But is that true? Is there really a correlation on any level? To test this idea, a team of researchers recently set out to document the rate of mucosal recovery in kids with celiac disease on a gluten-free diet. They also wanted to figure out whether IgA tissue transglutaminase (tTG) correlates with mucosal damage at the time of a repeat endoscopy with duodenal biopsy. The research team included Maureen M. Leonard, Dascha C. Weir, Maya DeGroote, Paul D. Mitchell, Prashant Singh, Jocelyn A. Silvester, Alan M. Leichtner, and Alessio Fasano. Their team conducted a retrospective chart review of one-hundred and three pediatric patients, under 21 years of age, with a diagnosis of celiac disease defined as Marsh 3 histology, and who underwent a repeat endoscopy with duodenal biopsy at least twelve months after initiating a gluten free diet. Their result showed that 19% of these pediatric patients treated with a gluten-free diet still had persistent enteropathy. At the time of the repeat biopsy, tTG was elevated in 43% of cases with persistent enteropathy, and in 32% of cases in which there was mucosal recovery. So, high tTG levels could be seen in both recovered patients, and non-recovered patients. The overall positive predictive value of the autoantibody tissue transglutaminase was 25%, and the negative predictive value was 83%, in patients on a gluten free diet for a average of 2.4 years. Nearly one in five children with celiac disease in this study population had persistent enteropathy, even with a gluten free diet. Also, IgA tTG was not an accurate marker of mucosal recovery. Neither the presence of symptoms, nor positive serology predicted a patient's histology at the time of repeat biopsy. These findings could help improve current monitoring and management criteria of celiac disease in children. Source: Journal of Pediatric Gastroenterology & Nutrition. doi: 10.1097/MPG.0000000000001460
  17. Celiac.com 11/10/2016 - So far, 2014 has been a challenging new year for me. I was reminded of some events that happened almost fifty years ago. Based on that reminder, I resolved to contact a former girlfriend, both to suggest that she get testing for celiac disease, and to apologize for some insensitive things I said and did when I was 17. She was a year younger than me and one grade behind me in school. She was very slender and exceedingly self-conscious about having what she called "a chest like a boy". (She may have been experiencing delayed development, as is sometimes seen in celiac disease.) Every new place we visited, she went looking for the washroom as soon as she could. Movie theatres, restaurants, libraries, everywhere we went, she found the washroom first. She even did that the first time she was at my mother's house, which occasioned an uncharitable comment from my mom. Pat was also troubled by some microscopic hair that was growing on her upper lip. It sounds silly now, but these things were important to her at the time. I remember telling her that nobody could see her "moustache" without a magnifying glass. Nonetheless, she put Nair on it and, for at least one day, had the brightest red upper lip I have ever seen. She said it was too sore to put makeup on, so it really drew a lot of unwanted attention. Until meeting my wife, I never knew anyone who was as honest about who she was. I regret that I didn't appreciate her as much as I should have, but that was partly due to my age. Time passed, way led onto way, and life happened. Forty nine years later, there I was, looking for her on Facebook and other social media. I tracked her through old phone numbers, family members, and I even searched the title on her parents' home. I was full of excitement about re-connecting with my old friend, a person with whom I had shared those last innocent days of adolescence. Our friendship had been cut short because her dad was transferred to a city more than 600 miles away, and she was annoyed with me because I had said and done some insensitive things. We never even wrote to each other. I used to talk about her with my students, explaining our mutual fascination with literature. I thought about her often, but never, until this year, considered contacting her. After about a month of searching, I eventually found her. Much to my dismay, I was almost a year too late. She had passed away on March 10th of 2013, at the age of 64. At the time of her death, she was in the process of being evaluated for Parkinson's disease. She was at home when she experienced her last, massive seizure, which resulted in brain death. Both of her daughters are heartbroken over Pat's sudden, unexpected passing. Already a widow, Pat had left this world before I took the time and made the effort to be in touch with her again. I was filled with sadness, disappointment, and regret when I first reached one of her daughters and confirmed that she was the person I had known. I still wonder, if I had gotten in touch a decade earlier, would she still be alive? Would a gluten-free diet have helped her? I'll never know, but the relevant literature does seem to suggest that a gluten-free diet may have helped (1, 2). Then, a week or so ago, I received an email from a concerned mom. Her athletic, teen-aged son was recovering from a brain concussion he had sustained. His friends who had sustained similar concussions, at other times, reported having recovered more quickly. His mom began to wonder if her son's slow recovery could be the result of his celiac disease, despite more than a decade of strict compliance with the diet. I didn't know. I could only offer the suggestions that he try daily supplementation with medium chain triglycerides, and a ketogenic diet, as they seem to have stopped my life-long tremors. I also suggested that he try avoiding dairy and soy as well, based on research I did 14 years ago for my grandson. This concerned mom also mentioned, "I generally find doctors are dismissive of the idea that celiac is linked to any issues outside the digestive tract, unless it's malnutrition-related, and they tend to think everything should be hunky-dory if you just follow the gluten-free diet." She went on to say that "It gets kind of old being thought of as the silly, overprotective mom." Neurological researchers have long known about a correlation between a variety of neurological ailments and gluten sensitivity, with or without celiac disease (3). We also know that neurological symptoms are commonly found among more than half of patients with celiac disease (4). Also, despite modern diagnostic protocols and technology, we are still seeing some overlap between celiac disease and both amyotrophic lateral sclerosis (5) and multiple sclerosis (6) as well as other neurological illnesses. For instance, the increased presence of the gene named Parkinson's disease 7 (PARK7) has been found in the duodenal mucosa of untreated children with celiac disease and may be implicated in the alteration of the permeability of their intestinal barriers (7). This further suggests an important link between gluten sensitivity and Parkinson's disease. This gene may predispose to the appearance of this most distressing disease later in life. Many people with celiac disease continue to experience neurological symptoms, despite compliance with a gluten-free diet. This may suggest that the neurodegenerative dynamics, once initiated by gluten ingestion, may continue, either in the absence of gluten or in response to trace amounts of gluten (10). I also started to wonder if the cellular and immune system clean-up processes that follow brain injuries might initiate some of the same damaging autoimmune processes in the brain? They might also occur in response to other dietary factors which may trigger autoimmune dynamics that mimic reactions to gluten, or maybe there is some other, unknown factor that triggers the brain damage. One research group on the leading edge of the investigation of gluten sensitivity in relation to neurological illnesses reports that, "Incomplete elimination of gluten from the diet may be enough to abolish gastrointestinal symptoms with recovery of the small bowel mucosa but is insufficient to arrest the state of heightened immunological responsiveness resulting in neuronal injury" (10). So, when it comes to even tiny amounts of gluten, they may be enough to perpetuate gluten induced neurological illnesses. There may also an agent in the environment that is causing a cross reaction. This area really needs more investigation, as baby boomers threaten alarmingly increased rates of all forms of dementia. We already know that people with celiac disease are at much greater risk of developing neurological diseases than the general population (13). These ailments range from headaches to learning disabilities to movement disorders to tic disorders, to seizures, to sensory disorders (4) and many who have non-celiac gluten sensitivity also experience a high rate of neurological disease (3). Does that also mean that young athletes with celiac disease will take longer to recover from head injuries? Does it also mean, given the slow acceptance of gluten as a factor in many common neurological illnesses (11) that people like my former high school flame will never be told about the neuro-protective benefits of a gluten-free diet or a ketogenic diet? Surely, resistance to the well established data showing neurological manifestations of gluten sensitivity as a scientific fact (12) is more emotional than rational. A gluten-free diet and/or a ketogenic diet should be offered to those people regardless of whether their neurologist is either resistant to, or not staying current with, his/her professional literature. But they cannot offer what they do not know or have developed some bias against. Dr. David Perlmutter has done an excellent job of getting the word out to the general public, with his recent book titled Grain Brain, but there is much more work to do. People who are gluten sensitive, and are therefore at greater risk of developing neurological disease, might be well advised to look carefully at the benefits of a high fat, ketogenic diet, and the benefits of supplementing with medium chain triglycerides and Omega 3 fatty acids (14). Equally, they might be well advised to avoid the pro-inflammatory omega 6 and omega 9 fatty acids, as well as limiting the amounts of polyunsaturated fats they eat, which are also pro-inflammatory 14). I find that I feel my best when I am in mild, diet-induced ketosis (about 15 mg/dl as measured in morning urine, with Ketostix, which are inexpensive and available at most drug stores). There are a number of good books that explore the fine points of a high fat, ketogenic diet. These include The Art and Science of Low Carbohydrate Living by Volek and Phinney, The Ketogenic Diet by Lyle McDonald, and many others. Finally, when considering a gluten-free diet for neurological ailments, it is important to recognize that 20 parts per million may be far too much gluten to consume. The maximum threshold to qualify as gluten-free under the United Nations Codex Alimentarius Commission and many other regulatory agencies, including the FDA, is 20 parts per million. Without further research, especially in the field of neurology and gluten sensitivity, we will never know what, if any, levels of gluten are safe to consume. Regardless of the nature of your neurological ailment, whether it is Parkinson's disease, or seizures, or multiple sclerosis, or amyotrophic lateral sclerosis, or brain cancer, or almost any other kind of cancer (15), or even if you are just slow recovering from a neurological injury, the positive results of dietary interventions might offer you a whole new lease on life. Sources: http://www.medscape.com/viewarticle/770593 Currie S, Hadjivassiliou M, Clark MJ, Sanders DS, Wilkinson ID, Griffiths PD, Hoggard N. Should we be ‘nervous' about coeliac disease? Brain abnormalities in patients with coeliac disease referred for neurological opinion. J Neurol Neurosurg Psychiatry. 2012 Dec;83(12):1216-21. Matheson NA. Letter: Food faddism. Am J Clin Nutr. 1975 Oct;28(10):1083. Zelnik N, Pacht A, Obeid R, Lerner A. Range of neurologic disorders in patients with celiac disease. Pediatrics. 2004 Jun;113(6):1672-6. Brown KJ, Jewells V, Herfarth H, Castillo M, White matter lesions suggestive of amyotrophic lateral sclerosis attributed to celiac disease. AJNR Am J Neuroradiol. 2010 May;31(5):880-1 Batur-Caglayan HZ, Irkec C, Yildirim-Capraz I, Atalay-Akyurek N, Dumlu S. A case of multiple sclerosis and celiac disease. Case Rep Neurol Med. 2013;2013:576921. Vörös P, Sziksz E, Himer L, Onody A, Pap D, Frivolt K, Szebeni B, Lippai R, GyÅ‘rffy H, Fekete A, Brandt F, Molnár K, Veres G, Arató A, Tulassay T, Vannay A. Expression of PARK7 is increased in celiac disease. Virchows Arch. 2013 Sep;463(3):401-8. Hadjivassiliou M, Grünewald RA, Lawden M, Davies-Jones GA, Powell T, Smith CM. Headache and CNS white matter abnormalities associated with gluten sensitivity. Neurology. 2001 Feb 13;56(3):385-8. Hadjivassiliou M, Sanders DS, Grünewald RA, Woodroofe N, Boscolo S, Aeschlimann D. Gluten sensitivity: from gut to brain. Lancet Neurol. 2010 Mar;9(3):318-30 Hadjivassiliou M, Grünewald RA, Davies-Jones GA. Gluten sensitivity as a neurological illness. J Neurol Neurosurg Psychiatry. 2002 May;72(5):560-3. Tengah P, AJ Wills. Questions and Answers About the Neurology of Gluten Sensitivity. Pract Neurol 2003;3:354-357 Hadjivassiliou M, Grünewald R. The Neurology of Gluten Sensitivity: science Vs conviction. Pract Neurol 2004;3:4, 124-126. Hadjivassiliou M, Grünewald R. Gluten sensitivity as a neurological illness. Neurol Neurosurg Psychiatry. May 2002; 72(5): 560–563. http://www.omegascience.org/product_ingredients/coconut_oil.aspx Paoli A, Rubini A, Volek JS, Grimaldi KA. Beyond weight loss: a review of the therapeutic uses of very-low-carbohydrate (ketogenic) diets. Eur J Clin Nutr. 2013 Aug;67(8):789-96
  18. Hi, I gave up gluten five years ago and have gradually been learning how to avoid cross contamination. Five months ago I started to get gluten reactions back to back and have only twice made it through two weeks without an obvious gluten reaction. I haven't been able to tolerate gluten free bread for a couple of years and recently went grain free which I believe helps. However, I have still been getting glutened up to twice a week. For instance, from airborne gluten (driving through a wheat field that was being harvested and walking past the air vent of an industrial sized bakery) and last night I got sick from cooking in my oven which had had a pizza cooked in it by my family - a rookie error, I know. I have finally got an agreement that my family won't use the oven for gluten and won't eat bread in the house, just cereal but this last one was the straw that broke the camel's back. I am losing hope that I will get a chance to heal. I live a few doors away from a Papa John's and on the other side is a pub kitchen. I just CANNOT face eating any more because I spend all day cooking from scratch vegetables, fruit, meat (I react to beans/eggs/soy and need to do a dairy challenge) but I am CONSTANTLY ill. I am even scared today to breath outside my house because of the Papa John! I have a young baby to care for and it's sunny outside but I am too weak, tired and depressed to do anything. Is there any hope for a (potentially) super sensitive. P.S. I am not diagnosed as I didn't know about celiac or NCGS etc when I gave it up. I am working with a dietician who very much approved of the range of nutrients I was getting, understands gluten etc. She wants us to find a way to get a kind of diagnosis and I am grateful but I know that I am on my own really because I have to be able to manage my environment. Have any super sensitives managed to go for any length of time without being glutened?
  19. Celiac.com 12/03/2008 - Xanthan Gum is a polysaccharide used as a binder in many gluten-free products. In the production of xanthan gum, sucrose or glucose is fermented by a bacterium, Xanthomonas campestris. After a four-day fermentation period, the polysaccharide is precipitated from a corn-based growth medium with isopropyl alcohol, dried, and ground into a fine powder. When added to a liquid medium, a slippery, sticky gum is formed, and this substance works well in holding baked goods together, or keeping separate liquid ingredients in suspension in salad dressings and sauces. While the above description doesn't make it sound very appetizing, what's the problem with xanthan? Some people develop an allergy to xanthan, with gastrointestinal symptoms such as bloating, gas, and diarrhea. Even consumption of a very minor amount can lead to days and days of recovery and many trips to the bathroom. Hmm. Sound like anything we've heard before? And that's the problem. Experiencing a xanthan reaction can make you question your gluten-free diet, make you think you were accidentally exposed to gluten, or mystify you completely. A xanthan reaction can also precipitate migraine headaches, skin itchiness, and for those exposed to large amounts, such as bakery workers, nose and throat irritation. Symptoms of xanthan sensitivity become more prevalent with increasing exposure, so that can be one important clue. If you've suddenly started baking alot, or become addicted to a new brand of gluten-free cookies, and you start to have increased gastrointestinal symptoms, you may want to consider ruling out an adverse reaction to xanthan gum. What's a body to do? Guar gum makes a good substitute, and it is also less expensive. How did I become aware of this? Well, actually I have known about this for quite awhile, but since xanthan gum is in so many gluten-free products, I thought that sensitivity to xanthan must be a rare and isolated occurrence. Then two things happened to change my mind. I began baking a lot of gluten-free products for a business venture, and suddenly started having some gastro-intestinal problems, after being healthy for so long. I didn't have the severe pain of a gluten reaction, but otherwise my symptoms were eerily similar, particularly the bloating. I had already decided to lay off the baking (and tasting) as much as I could, and had narrowed the possibilities down to either tapioca starch or xanthan gum. Then, a student in one of my cooking classes let me know that she had a severe allergy to xanthan, and described her symptoms. They were identical, except in severity. I reformulated my recipes using only guar gum for my next stretch of gluten-free baking, and I had no problem at all. I certainly hope that I do not develop a reaction to Guar gum, which is the ground carbohydrate storage portion of the guar bean. I have not seen reports of allergy or sensitivity to guar gum, but will do a little more research for my own knowledge, which I will share in the future. By no means am I advocating that all people following a gluten-free diet give up products made with Xanthan gum. But, if you do not feel that the diet is helping you, and are still symptomatic, a sensitivity to Xanthan gum is one possibility that needs to be ruled out.
  20. I would greatly appreciate it if I could get some feedback for some issues I am having. I was diagnosed with Celiac back in February, actually the first time was back when I was 10 but the doctor told me a few days afterwards the test supposedly was a false positive so after basically living in emergency rooms through my teens I decided to pursue the subject once again on my own and whattya know the test was positive after all. Anyways, I have been living gluten free for about 6 months now and although I am nowhere near as sick or in pain as when I was eating gluten as well as my physical and mental health taking a turn for the better including losing 30 pounds I still find myself with a stomach ache or some digestive issues atleast half the time after I eat anything. I've been chalking it up to the fact that I basically poisoned my body for over 20 years so I have no doubt my digestive system would remain sensitive to anything with too much grease, dairy, spice, etc or just large amounts of food in general and it should get better over time as it recovers but I'd really like to know if anybody else had these issues or has any advice on what to do about them because sometimes I feel like I still have to choose between eating and having my stomach hurt or being uncomfortable. I'd also like to know if anybody could explain to me the whole concept of becoming gluten free as far as in your body because I haven't had any real consulting just the diagnosis and I thought you just stopped eating gluten and everything in your body was normal but I see people continuing to get blood tests and watching their gluten levels go down over time which I didn't know was a thing. How exactly does that work and how does continuing to still have any sort of gluten level in the body affect it? Could still having gluten levels in my body be what is causing these symptoms?
  21. Hi, I've posted on here before and everyone's input was definitely helpful so I thought I'd do it again. I'm 22 and I was diagnosed with celiac via an endoscopy biopsy a year ago. After a couple of months of going gluten free, I was feeling really great and, dare I say, pretty close to being back to "normal." So from about January to July I was feeling well, other than once or twice when I was accidentally glutened. However, around July this past summer, I started having stomach problems again, including cramps, diarrhea, bloating and heartburn (which I never had heartburn until I got celiac). These symptoms are milder than when I had undiagnosed celiac, occurring 1 to 3 times a week, rather than almost every day like before. But still, they are pretty similar symptoms. I take immodium and bentyl pretty regularly, maybe overuse of the meds is messing me up. I got another round of labs done about 2 months ago, and everything came back normal. Thinking it might be another food allergy, I visited an allergist and they did skin tests and did not find anything. I am not having any histamine reactions, either, but I never really have from the get go. Of course, the allergist said that he could not really do much testing, otherwise, as blood work would not detect anything food related. He pretty much advised to take foods out of my diet to see how I'm feeling and try to narrow it down. As careful as I am, I know there is a risk of cross contamination. However, I didn't think I was THAT sensitive, as back in the winter I accidentally drank a sip of regular beer thinking it was my own, and felt fine the net day. So I figured that a teeny tiny amount did not really affect me. I am slightly frustrated in that I was feeling really well and out of nowhere I started slipping back again. I have read articles that say that a celiac's stomach is never fully healed, but they always seem gimmicky and promote a really specific diet. I am skeptical when reading things like, "gluten free diets alone don't work." But, I can't deny that I am still having issues. I am definitely willing to alter my diet in terms of eating more clean, but realistically I don't think I could ever go 100% clean. I eat pretty well already but, like everyone, I enjoy junk food once in a while and love dining out once a month or so. At this point, the next step is for me to go back to the gastro, but I wanted to see if I was maybe missing something or not thinking about something else that may be causing this. Basically I am wondering if anyone else has experienced something similar to this and if it was due to diet, or maybe another related gastrointestinal disorder. I am also not sure about which foods to test out removing from my diet. I went dairy free for a while and I was still having the same issues. Has anyone had their sensitivity increase after being gluten free for a few months? Is there a factor I could be neglecting to take into consideration? Any input would be greatly appreciated! Thanks.
  22. Hi, I am new to the site. I was just diagnosed at the end of December and started the gluten free diet a few days ago. I did not have any symptoms while I was eating gluten (I was diagnosed because my doctor decided to run a routine blood test and added the celiac panel because I have had Graves disease) but the second day I was gluten free I started a horrible headache and I have been feeling sick ever since. I even threw up this morning. Is this typical and if so how long does it usually last?
  23. Celiac.com 08/07/2015 - Actor Michael Douglass is making gluten-free celebrity news with his recent disclosure to ITV's Lorraine Kelly that he is eating gluten-free, and that he views the diet is an important part of his post-cancer health regimen. The 70-year old Oscar-winning actor says he feels "great," and credits the gluten-free diet with boosting his memory and transforming his health five years after cancer battle. Douglass recommends the diet and says it has helped him recover and maintain his weight after dropping over 40 pounds in his battle with throat cancer. The American actor, who stars in the superhero film Ant-Man, set for release this week, also spoke with Kelly about his past battles with alcohol and his marriage to Welsh actress Catherine Zeta-Jones. Douglass revealed that he views a gluten-free diet as a key factor in his improved health and well-being. The gluten-free diet has proven popular among celebrities and athletes, including Gwyneth Paltrow, 42, and this year's Wimbledon champion Novak Djokovic, 28. Read more at DailyMail.com
  24. Celiac.com 07/15/2015 - Current celiac disease call for a follow-up biopsy taken 1 year after diagnosis to monitor gut recovery. Many celiac patients show incomplete gut recovery at that time, but there’s not much research to help doctors figure out how significant this might be. A team of researchers recently investigated associated factors and the significance of imperfect gut recovery in patients in whom the follow-up had been completed. The research team included Henna Pekki, Kalle Kurppa, Markku Mäki, Heini Huhtala, Harri Sievänen, Kaija Laurila, Pekka Collin and Katri Kaukinen. They are variously affiliated with the Medical School and the School of Health Sciences at the University of Tampere, the Tampere Center for Child Health Research at the University of Tampere and Tampere University Hospital in Tampere, Finland, the UKK Institute inTampere, Finland, the Department of Gastroenterology and Alimentary Tract Surgery, and the Department of Internal Medicine, Tampere University Hospital, Tampere, Finland. For their study, the team split 263 biopsy-proven celiac patients into two groups: one with histological recovery, and the other with incomplete recovery, after one year on gluten-free diet. The team measured serology, laboratory values, bone mineral density, and various clinical variables at diagnosis and after one year. They used validated questionnaires to assess gastrointestinal symptoms and quality of life, and also gathered further long-term follow-up data on mortality, malignancies, and other severe complications. The results showed that the incomplete recovery group had more severe mucosal damage (P=0.003), higher antibody values (P=0.017), and more signs of malabsorption at diagnosis (P<0.001). The data showed no difference in gender, symptoms or quality of life, family history of celiac disease, or co-morbidities. Follow-up showed a difference in antibodies (P=0.018) and femoral T-scores (P=0.024). Histologically recovered patients showed better gluten-free dietary adherence, although both groups reported close adherence to a gluten-free diet (97% for recovered group, versus 87% for the incomplete group (P<0.001). Interestingly, there was no difference in long-term outcomes between groups. Although, patients with more severe celiac disease in terms of histology, serology, and signs of malabsorption were more likely to show histological non-response. Patients who closely follow a gluten-free diet, incomplete villous recovery after 1 year does not affect the clinical response or long-term prognosis. Source: The American Journal of Gastroenterology , (2 June 2015). doi:10.1038/ajg.2015.155
  25. Hello everyone, I was diagnosed in early January and adopted a 100% gluten free diet, as well as trying to eat primarily whole foods. I felt pretty much completely better and my main symptom, persistent nauseation, was alleviated. I was doing very well for several weeks, when I consumed a large amount of black rice and had diarrhea for about a week (featuring undigested black rice - ew). Since then, I have had increasingly intense symptoms, and a wider variety of symptoms than I was suffering pre diagnosis. I usually experience a few days where I feel almost back to normal, and then I will feel terrible as though I have been glutened for many days. I have extreme lower abdominal pain that lasts 2 - 3 minutes (worst pain I have ever experienced, I double over and want to cry out), fatigue, I feel nauseated, indigestion, passing partially digested food, diarrhea, burning in the stomach, anxiety (and anxiety driven nightmares), and heartburn. Has anyone else experienced this? What should I try? I am considering attempting to cut out fibre, or trying the SCD diet. Any advice or support would be very, very appreciated. I am beginning to feel very discouraged Isabella