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  1. Celiac.com 06/13/2012 - In general, doctors and researchers know a good deal about how celiac disease works, and they are finding out more all the time. However, they know very little about non-celiac gluten sensitivity (NCGS). In an effort to learn more about non-celiac gluten sensitivity, a team of researchers recently carried out a study to measure the presence of somatization, personality traits, anxiety, depression, and health-related quality of life in NCGS individuals, and to compare the results with celiac disease patients and healthy control subjects. They also compared the response to gluten challenge between patients with non-celiac gluten sensitivity and those with celiac disease. The research team included M. Brottveit, P.O. Vandvik, S. Wojniusz, A. Løvik, K.E. Lundin, and B. Boye, of the Department of Gastroenterology at Oslo University Hospital, Ullevål in Oslo, Norway. In all, the team looked at 22 patients with celiac disease and 31 HLA-DQ2+ NCGS patients without celiac disease. All patients were following a gluten-free diet. Over a three day period, the team challenged 17 of the celiac disease patients with orally ingested gluten. They then recorded the symptoms reported by those patients. They did the same with a group of 40 healthy control subjects. The team then had both patients and healthy control subjects complete questionnaires regarding anxiety, depression, neuroticism and lie, hostility and aggression, alexithymia and health locus of control, physical complaints, and health-related quality of life. Interestingly, patients with non-celiac gluten sensitivity reported more abdominal (p = 0.01) and non-abdominal (p < 0.01) symptoms after the gluten challenge than patients with celiac disease. The increase in symptoms in non-celiac gluten sensitivity patients was not related to personality. However, the two groups both reported similar responses regarding personality traits, level of somatization, quality of life, anxiety, and depressive symptoms. Responses for both groups were about the same as for healthy controls. The results showed that patients with non-celiac gluten sensitivity did not show any tendencies toward general somatization, as both celiac disease patients and those with non-celiac gluten sensitivity showed low somatization levels. Source: Scand J Gastroenterol. 2012 Apr 23.
  2. Celiac.com 03/30/2016 - The woman's voice, polite but firm came over the line: "We cannot accommodate your mother." "You can't accommodate her?" I wondered if I'd heard wrong. "No. We just had a team meeting and it was decided we cannot accommodate your mother because of her diet." "Oh." The line hummed as I took in both the news and the woman's frosty tone. The previous week the woman, the admissions coordinator of the nursing home, had been all warm and inviting, even eager to have my mother. Finally I came out with, "Well…thank you for letting me know," and the line clicked dead as the woman hung up. I had not seen this coming. I hadn't realized that a nursing home would, or could, turn down a patient based on the need for a therapeutic diet. I thought the reason for a nursing home was to care for ill people. When I toured the nursing home, the woman proudly proclaimed the facility as being on Newsweek's top recommended list, and gave the appearance of understanding my mother's gluten-free diet, saying, "My niece has told me of it. She's convinced me to eat more gluten-free." The woman went so far as to take notes on my mother's preferences, her love of sleeping in and drinking coffee, and then plopped in my arms a thick packet of Medicare forms. In all ways she had been exceedingly pleasant. Indeed everyone I met at the facility had been pleasant. Purring cats roamed the facility's hallways, birds sang from cages, and they even had a pot-bellied pig in the shade of a tree that could be seen through a window, all for the comfort of the patients. It struck me that they could do these many things for their patients, but feeding one small woman with celiac disease a gluten-free diet was beyond them. My mother is eighty-eight years old, a pixie with a contagious smile and genteel Southern manner. She was diagnosed with celiac disease at the age of seventy-five. At that time she was on daily use of a nebulizer, sleeping half days and could not leave home and the bathroom unless she took Imodium. The diagnosis and strict adherence to the gluten-free diet returned her to an active life. She took up painting and driving her aging neighbors out to enjoy shopping. A year ago, in rapid succession, a mass was found in one of her lungs, glaucoma took her sight and a stroke impaired her right hand and memory. For months, she required caregivers around the clock. Today she is mobile with the aid of a walker and can manage nights on her own. She can do one thing for herself, and that is get herself to and from the bathroom. Everything else must be done for her—bathing and dressing and maintaining clothes, medications, food preparation, working the television and her bedside radio. On occasion she will get confused and afraid, so I try not to leave her alone for more than an hour. With the aid of private caregivers and hospice assistance, I have been able to keep her in my home, where she has lived for the past six years. However, her funds are depleting for private care, and there is no one to help me care for her. After the disappointing phone call from the nursing home admissions coordinator, I sat thinking over all the above facts and allowing myself a sizable hissy fit. Then I gathered myself together and took another look at the nursing home facilities in my area. For the next two weeks, I sought more information and made lists. My plan was to be better prepared in knowledge and approach. Running on the theory that it is lack of knowledge that causes the fear of a situation, I put together information on my mother: a list of her conditions, needs and food preferences. Because of no longer having teeth, nor wearing dentures, and her advanced age, she needs soft foods, her favorites being eggs and Vienna sausage, puddings, bananas. At the time she would eat mashed chicken and some vegetables, all simple things. I wanted to reassure the admissions director and staff of the nursing facilities that my mother was easily cared for, and that I was willing to help with her food. I also had two brochures from Gluten Intolerance Group: a single sheet on celiac disease itself, and a color glossy brochure, put together in cooperation with the National Foundation for Celiac Awareness, entitled Celiac Disease in the Older Adult. I hoped to engage the interest of people whose primary aim and business is providing healthcare to the elderly. What I discovered is a general lack of any interest in the welfare of the elderly. The young woman admissions coordinator of my second choice of facilities, a modern, airy facility, answered my question about their kitchen and possible meeting with the dietary manager, with, more or less, "I've shown you around the building. I don't know what else you want to know." Then she added, "And right now we don't have any female beds available." At another facility, the admissions coordinator brushed aside any idea of speaking with the dietician. She did not know what celiac disease was, but assured me they could, "probably handle it." The best facility that I found had a waiting list of at least forty names. They stayed so full that they did not provide temporary respite care. Even so, the admissions coordinator showed me around the building, which was very old, and the sight of an elderly blind woman slumped uncomfortably in a wheelchair in the hallway haunted me. Yet their menu posted on the bulletin board seemed promising. "We do home-cooking," the coordinator said proudly. Then she glossed over my request to see their kitchen and meet the dietician. She admitted to never having heard of celiac disease, but said, "We've had many people with uncommon conditions," and put my mother's name on the waiting list. My eye followed her fingers working the pen far down the yellow legal pad. When I offered to leave the brochures about celiac disease with her, she did not even glance at them, but dismissed them with a sweeping wave, saying, "Oh, there's no need." Weeks passed. My mother's hospice social worker joined in on the search. She found a facility willing to give the respite stay a chance. "They've had a previous celiac patient," she said. By now I was quite skeptical, but also curious with this news. The facility she suggested was the closest near my home, and I could easily visit each day. I agreed to meet with the admissions coordinator. The woman said that, yes, the facility had had a previous patient with celiac disease. It was the experience with this patient, who had been uncooperative and would steal food off other patients' trays, that caused the hesitation on their part. "But we're told your mother wouldn't do that," she said. Upon studying the fact that my mother was quite incapable of snatching food anywhere, the admissions coordinator said they were willing to offer respite care. I was impressed (surprised is the better word) when the coordinator called the dietary manager to meet me. He read the diet listing I had made up for my mother and said they would have no trouble in providing for her. I volunteered to bring her favorites of chocolate pudding and canned peaches and Vienna sausage for times they might have things she could not eat, and of course any homemade gluten-free cakes. We packed my mother up, and she went for her week respite at the facility. Her long-time caregivers went as well to provide support in the strange environment, help her learn her way to the bathroom, and to circumvent the inevitable glitches. The first day for lunch in the dining room, my mother was brought Vienna sausages (which I had provided), nothing else. My mother's caregiver went to the kitchen and inquired of the cooks, surveyed the kitchen and the menu of baked chicken and broccoli and how it was cooked and said, "She can have that." We began to wonder how the previous patient had been fed. I also began to wonder if anyone even glanced at the diet I had printed for my mother. However, the glitches that week were small. My mother ate well, enjoying their broccoli and branching out to embrace canned spinach. We learned the main reason the facility could and did for that week, succeed in feeding my mother quite well was that they had a full working kitchen and did not rely on food service, where all the meals come prepackaged. The respite week also worked because of my mother's private caregivers. They monitored the food and educated the kitchen staff. The dietary manager went so far as to voice his gratitude to one of the caregivers for helping them learn what my mother and could not eat. While it appeared no one read any of the dietary information, over all the stay went well enough that a month later, I decided to try it for long term care. The plan was to have her private caregivers ease my mother through the transition for approximately a month, and then gradually reduce their hours, as the nursing home staff learned my mother's needs. We believed it possible to educate the staff. The first week went fairly smooth, with a few expected glitches. After that, things went downhill. A semi-soft diet had been requested; this never materialized. My mother's food would be placed on her tray in her room, and left, covered. Either my mother's private caregivers or I had to come in and help my mother eat. Mom's private caregivers continued to mash any meat and large chunks of vegetables, such as sweet potato served still in the skin. They continued to intercept sandwiches on bread and dishes of cake and snack cookies left on her tray. Throughout all of this, my mother's caregivers or I consulted with the dietary manager and the kitchen staff. We thanked them for the good food when it came. We explained again what she could and could not have. We formed the habit of checking each day's menu and writing out foods from that menu that my mother could eat. The kitchen staff accepted these menus and taped them near the stoves. When there was nothing on the menu that my mother could or would eat, we suggested easy canned substitutions. Sometimes she got these substitutions, sometimes not. Then came the day when I was told that for the evening meal my mother had been served a hotdog and fries of some sort, both too hard for her, or anyone, to eat. (Keep in mind we are paying for this food.) My mother's caregiver took her back to the room and served my mother her snack cakes and pudding I had provided. Her roommate shared in the cakes, because she had come in too late from her dialysis treatment to get dinner. Why her tray had not been saved for her, I have no idea. I had never seen this woman provided any sort of special diet, and she was both diabetic and had kidney disease. The following morning I also I learned one of the kitchen staff responsible for following the therapeutic diet said to my mother's caregiver: "Oh, she doesn't need that diet. That's all made up." I faced the fact that providing for my mother was too much trouble for the staff, and they were simply unwilling. My mother was never going to get the food nor the care in eating that she would require at this facility. As of this writing, my mother is back home. Private caregiver hours have been drastically reduced. I am able to do this, for now. Here are some chilling facts: Studies indicate that today in our country not only are the incidents of celiac on the rise in all age groups, but the median age for celiac diagnosis is just under 50 years of age, with one-third of newly diagnosed patients being over the age of 65.* (Celiac Disease in the Elderly, Shadi Rashtak, MD and Joseph A. Murray, MD) This is the age group who are the primary caregivers for themselves and their parents. This is the age group who more often must undergo surgeries and stays in rehabilitation nursing facilities. Couple the above figures with the fact that we are an aging population. At the current rate, the number of people age 65 and older is projected to double between now and 2050. The baby boomers, responsible for the great population growth, now average over the age of 65.* (An Aging Nation: The Older Population in the United States, by Jennifer M. Ortman, Victoria A. Velkoff, and Howard Hogan, U.S. Department of Commerce, Economics and Statistics Administration, U.S. Census Bureau.) These simple facts paint a picture of a growing challenge. We must be able to provide short and long term nursing home care for the many celiac patients around us today—my mother, myself, the number of over-60 celiacs I've talked to—as well as the tidal wave looming on the horizon. In addition, we have other food intolerances on the rise, and we have the needs of those with diabetes and kidney disease and other conditions requiring dietary restrictions. At present, all of these people, not only those with celiac, are being overlooked and discounted. I have no solid answers to this immense problem. I do have suggestions on things that can be started. The celiac community must recognize and begin to talk seriously about the problem of dietary care in nursing homes. Printing up a glossy brochure with the advice to have the doctor write an order for a therapeutic diet is a start. We have to step out more aggressively with ways to educate and implement therapeutic diets in a real way. We have programs in place educating restaurants and the food industry. Let's get aggressive with the health industry. Of course, my experience is that these facilities do not want to be educated. This is where legislation is required. We need to lobby for legislation that requires compliance in the nursing facility industry, in the same way that food labeling compliance was attained. Further, we need to support the push for legislation for a required number of CNAs per patient in nursing home facilities. At present, there are laws only governing the minimum number of RNs required per patient in nursing facilities. * (Minimum Nurse Staffing Ratios for Nursing Homes, Ning Jackie Zhang; Lynn Unruh; Rong Liu; Thomas T.H. Wan, Nurs Econ. 2006;24(2):78-85, 93.) There are no mandatory minimums for the number of CNAs, the people who actually do the bulk of the patient care—those who would monitor a person's diet and help that person to eat. At present the nursing home facility is allowed to choose for themselves the number of CNAs they need. I remarked to a friend that there were a number of camps for children with celiac disease, places the child could get away and enjoy and eat safely. "Well, what about for the elderly?" my friend said. "It seems if they can do it for kids, they could do it for the elderly." What about the elderly? This is our new challenge—to make certain those elderly people with food sensitivity needs are well cared for.
  3. Hey guys! I’m a graphic design junior, and we are in the first semester of our capstone. My mom was diagnosed with celiac, so I’m really passionate about helping make the post diagnosis life a little easier. I’m not sure what specific problem within celiac disease to tackle. I have found it helpful to talk to those with celiac about what they find most frustrating or challenging. If anyone has any suggestions on what is most frustrating or what you wished you had to help, it would be much much appreciated!
  4. My 3 year old has been gluten free since before birth, since I am gluten free. My sister is diagnose celiac, I was tested but it was negative, I carry the gene, and since I tried for months to find any other cause for my fatigue without result, I went gluten free to try it and felt a million times better. So, when I was breastfeeding her, I accidentally ate something with gluten, and she got diarreaha. Once she got to table food, she tried some gluten, and got diarreaha. The pediatrician and I ageed to avoid more gluten. This summer, we did a gluten challenge with her, I want some kind of diagnosis for upcoming public preschool and kinder,etc. She had rotating constipation and diarreaha all summer, and the poor thing would say 'My tummy is angry' when she had to poop. At our visit, the gastro dr sounded optimistic my child would have some kind of result, given family history and symptoms. Well, her tests came back in 'normal range' And I pushed for the IgG and IgA to cover all the bases. So, what next? Dr said biopsy isn't necessary since results are normal. I want my child to go back to gluten free becuase she had zero bowel issues then. My pediatrician is ok with using a 'non-celiac gluten sensativity' on any school papers I need, but that diagnosis doesn't have and legal/federal support. I guess I should just hope for supportive teachers and be that really annoying parent? (They eat a very gluten-full breakfast and snack in their classrooms everyday in our public schools, I just worry about busy teachers not having time to clean tables and stuff, which would be mandated by a 504 if she qualified)
  5. Hello-- I've been gluten free for almost 3 years ago up till about a week and a half ago. I'm trying to figure out whether to continue eating gluten to be officially tested. I originally went gluten free after 3 years of antibiotics for lyme disease. I had heard that stopping gluten products might stop my symptoms and after going gluten free my symptoms did stop. The problem is, I'm not sure if my symptoms were actually lyme disease or caused by celiac. My main symptoms with lyme (when I was not on antibiotics) were extreme fatigue, lots of brain fog, anxiety and rage, and all over disseminated body pain, electric shock like feelings running down my legs and muscle tics. My doc always said my symptoms were atypical of lyme, but since the antibiotics were helping he kept me on them. Whenever I got off the antibiotics, symptoms would resume (thus the lengthy course of antibiotics). In 2011/2012 my lyme doc stopped taking medical insurance, and I was starting to get worried about all those antibiotics. I discovered that some chronic lyme sufferers went off the gluten and managed to remain symptom free. I went gluten free and my symptoms gradually stopped and so did a lifetime of a bloated belly. In the beginning, I would often accidentally glutenize myself and be hit quickly with almost a full day of utter exhaustion, brain fog, irritation and all over body pain. This made me very serious about never eating gluten. Gradually, I stopped accidentally glutening myself and have felt very healthy. However, as anyone who tries to stay gluten free knows, 3 years of not eating at restaurants and packing my own food everyday grows tedious and sometimes almost oppressive. A year ago, I tried two pieces of pizza to see if I’d been gluten free long enough—I spent the next day in such a brain fog that I almost felt drunk. So, I resumed the gluten free diet. About a week and a half ago, I was at a work function at a fancy schmancy restaurant and hadn’t eaten enough food ahead of time, and I finally broke and had a gorgeous piece of French bread. I didn’t immediately explode as I thought I might. I woke up the next day brain intact, so I ate some more gluten products the next day. My mouth felt awesome. In fact, I felt awesome till about 2 days later. Brain fog has resumed, and I just feel spacy. The all over disseminated body pain has begun again…the exhaustion is creeping back. Does this sound like celiac? Should I continue to the gluten challenge? Different websites state different amounts of time we have to ingest gluten… I see one study that states I’d have to eat it for almost 12 weeks! And then another which says 75% of celiacs will test positive after only two! Thank you for your feedback—my main wonder is if this all over disseminated pain and fogginess sounds like celiac. It only comes when I’ve eaten food containing gluten…
  6. Hi everyone! Long time reader, first time post. I believe I have celiac disease, but I don't have a diagnosis, and I've tested negative a couple of times (while gluten-free). I wanted to see what you experts think after hearing my story. I'll try to keep it short Sorry in advance for yucky details. I've had really minor digestive issues most of my life that I can remember... just 2-4 BMs a day until a few years ago when it got worse. I had itchy bumps on my back (mostly upper back, but extending down as far as my buttocks) since my late teens or early 20s. I always thought they were just acne; after all, I could pop them. But they tended to itch like crazy, and scratching/popping them "burned" in a way that acne on my face didn't. A few years ago, my wife went gluten-free to try to solve some digestive issues of her own, and I went along with it. I'd say this was about 3-4 years ago. Now I know we were really just gluten "light" at the time, and I would still "cheat" when I was away from her since I didn't assume it was my problem. Gradually, I realized that when I "cheated" I'd pay for it with some more diarrhea than usual for myself. Even on an average day, I was going about 6 times, while I'd go more like 10-12 when I "cheated". Meanwhile, I'd developed what I think is "brain fog": I'd have trouble focusing my eyes to do my work as well as trouble focusing my mind on whatever problem I had to solve. All along, I didn't realize my digestion was abnormal, and I thought the brain fog was just me being bored of my work or lazy. As I started making the connection to gluten, I started reading more and trying to eat more carefully. My work offers free buffet-style lunch. I started moving to just the salad bar with no dressing and grilled chicken. We started being somewhat more careful about restaurants (though we still ate out 1-2 times a week). After about two months of this, I finally had normal BMs for a few days! I was able to focus and think in a way that I'd forgotten I could do! My back had stopped itching! So the timeline was something like this: - 1-2 years "gluten light". Hamburgers w/o buns, but occasional cheating, and no avoidance of "hidden gluten" like soup stock. - After that, 6-8 months of no cheating (but being clueless about hidden gluten) - after that, 2 months of being as careful as I knew how. At this point, I'd lost symptoms I didn't know I had. I was elated, but also thought it was time to go get tested. (Silly, ignorant me...) I started reading and realized I should've had a gluten challenge! I kept my doctor's appointment anyway, and talked to her about it. She said "some of the tests don't require you to be eating gluten". So I thought "cool, there's some new test!". I started a gluten challenge that day, since I'd read I needed to that if I got an endoscopy. I made it 5 days. Oddly, during that 5 days, my digestion didn't get that much worse, but I got new symptoms I hadn't seen before. My eyes were red and hard to open every morning... the white of my eye got swollen for a day (I think it's called episcleritis.) Some of my joints started hurting. I had a pain in my gut that I'd never felt before (though some pain was just "life" before). After 5 days, my test results came back negative... my doctor said "if you feel better without gluten, then just don't eat it". (I think she means well, but doesn't really understand how hard it really is!) This was mid-September last year. So at this point, I stopped eating gluten again and tried to be as careful as I could. Unfortunately, I think those 5 days did a fair bit of harm. Over the next ~3 months: - I lost about 30 pounds (225 to 193) while eating about as much as I could. - I wanted to sleep all the time... napping during the day when I could, and going to bed early, and waking up 10 hours later feeling like I needed several hours more. - My diarrhea never went away... - I noticed myself getting more sensitive... I think these were all "glutenings" (that ought to be a horror movie... "The Glutening") --- most restaurants would make me sick, even ordering "gluten free" --- I got sick after picking up a malt vinegar sea salt potato chip and not eating it. Didn't wipe my hands? --- I got sick after handing my daughter some roasted sunflower seeds and eating something safe with the same fingers. --- Got sick at my mother-in-laws when we used her utensils to cook. For me "getting sick" means that about 1-2 hours after the offending food, I get very urgent diarrhea, and I end up not able to go far from a bathroom for the rest of the day. I'll go something like 10-12 times a day the first two days, tapering off to about 6 times a day over the next week. (Recall I got to "normal" before the stupid 5 day challenge!) Also a couple of days after what I think is a "glutening", those itchy bumps return on my back. Sometimes not many; how many and how itchy might depend on how badly I got hit. My gut will sometimes (not always) hurt in a weird way, like my intestine wants to digest itself or something. Very distinct from gas pain (with which I'm also unfortunately very familiar :-p). But for me, the very worst is the "brain fog". I can't focus on anything... it makes me terrible at my job and a terrible parent and husband, and I hate it. The first few days are the worst, and it gradually improves over 1-2 weeks I think. Fast forward a few months, and (aside from learning the ropes of cross contamination), I had the most energy I had in years, the itching was gone, and a bald patch on the back of my head had started growing back. But since my diarrhea hadn't gone away this time, my doctor sent me to a gastroenterologist for a SIBO test. I think that was in December? Anyway, it came back VERY positive. I only had to blow for a baseline reading and then three more times (two was the minimum). So good news was, I was done with the 2+ hour test in less than an hour :-p. The nurse asked me about my problems and thought I should see the GI. He prescribed Xifaxin and told me to get back with him if it didn't help. That didn't help much, so in January I called back and had an appointment with the physician's assistant at that office. She listened to me very patiently and decided I should have a colonoscopy and another celiac test (same one plus genes). Having been gluten-free again for several months, it was negative! But when they saw that I had HLA-DQ2.2 (why does that show up as "inconclusive", anyway?!?), they added an endoscopy to see if refractory celiac might be my problem. I asked her at that time if I should do a gluten challenge, and she thought it would be a bad idea to put myself through that. The endoscopy/colonoscopy was set a few months out for April... I was very tempted to start a gluten challenge two weeks beforehand (my wife thought I was nuts). Well, in March I started having a decent amount of blood in my stool... when I called and told the GI nurse that, they squeezed me in the very next day. That was awesome, but it thwarted my probably stupid plan of a gluten challenge ;-) OK, so did the endoscopy, and the doctor noted my intestines (both) were "friable" (fragile?) but no visible lesions. The bleeding was from internal hemorrhoids, so no big deal there, and I had a benign polyp removed. Biopsies on my small intestine were negative, but I was POSITIVE for Microscopic Colitis. I've since been put on a bunch of pepto bismol for ~8 weeks, which brought me down to 4 potty trips a day. More recently my GI doc more recently put me on entocort; I'm in about week 6 now, and I'd say it's helping. I honestly feel funny even complaining about that, because I feel so much better than I have in about 10 years. Some other weird stuff I've had that may or may not be related: - Had neuropathy where half my hand was numb for about 6 weeks in my mid 20s. - A few months ago, I had a big/weird bump on my finger, and got joint pain on that joint of my finger, and the same joint on the other hand for some reason. My doctor thought it was cellulitis, but antibiotics did nothing for it... later, steroid cream helped, and it's under control now. - I've discovered that even a little lactose makes me super gassy and adds to my diarrhea. Fructose does too, just not quite as badly. I don't think that was the case before the 5 day challenge. Summary of symptoms/evidence: - Diarrhea that gets worse with gluten - Microscopic colitis. (I gather this is highly associated with celiac?) - Extreme tiredness after gluten challenge - Major weight loss after gluten challenge - Gut pain with gluten. - BRAIN FOG! I see a lot of people recommend a gluten challenge, but I'm really afraid to do it. The 5 day gluten challenge I did set me back for months at least as far as I can tell; I don't want to give myself any more long term health problems... I'm still not back to as healthy as just before I did it, but I do actually feel really good, and it's addictive! Most of all, I'm afraid of the kind of husband, father, and employee I'll be if I try it. 12 weeks just sounds like a nightmare. Oops, I was going to be brief, but instead wrote a novel! Sorry! So what do you all think??? Am I likely to be on the right track? Is it worth trying to badger my GI doc (who overall is great) into a diagnosis _without_ a positive endoscopy or blood test? I still unfortunately obsess about it and doubt myself enough that I sometimes think about the challenge, but I just can't do it to my family. I'd appreciate your expert opinions... thank you for reading!!! -Dave
  7. Hey everyone, I was 21, had an increasing diarrhoea problem for months docs could not find why? Then a gastroenterology specialist asked for celiac disease blood tests. Whoops, came positive on anti-gliadin IgA and IgG as well as anti-endomissium IgA and IgG. Had to get a biopsy somewhere else by a general surgeon and that came negative. But the previous doc told me that could happen, to go gluten-free anyway as I showed positive on 4 bloodtests. After I went off gluten the months-old diarrhoea problem eased up and disappeared in a couple weeks. Now I am 24 and obliged to join the army (Turkish, btw). Army docs want me to get sick to get me off duty. So I have been on gluten again for 10 days. I havent had any problems yet, and have been eating like crazy. Read that some people here suffered enormously even after one meal. I do have a strong body, even the worst cases of diarrhoea days, I had no other visible problems and all my other stuff looked/looks fine. Now I am curious of all this, if I have it or not at all. The blood was all positive and the symptom stopped. But no problem for 10 days, when do the symptoms usually show? what was your experience or do you have any advise on this? wish y'all a healthy life! Hasan
  8. I was diagnosed with Coeliac disease at age 2 (biopsy) and have been on the diet all my life. (Now aged 45) This is the fist time properly reading anything about it coming to this website. I have always understood Coeliac disease to mean - eat wheat and you throw up, have diarrhoea and stomach pains. When I moved from milk to gluten aged 6 months I started being sick and lost weight. Once I was old enough to have freedom to roam a bit, aged 11ish I cheated when it suited me on a snack here or there. And through my adult life when I’ve been caught out on the road I’ll eat a slice of pizza, breaded chicken or other junk food to keep me going when there’s no other option. Stock cubes, beer, soy sauce etc. I’ve always treated as ok but know they have traces. I have stayed on the diet, with the exceptions above admittedly because way back I was told even without any symptoms you have to stay on the diet as otherwise ‘it’s bad for you’. And so I have, but thinking it has never affected me past the age of about 8 years old. Reading this site though has shown me a whole list of things I would never have though had anything to do with being a coeliac and look more like a list of things that happen to people in general. All very vague and nebulous symptoms. I thought Coeliac disease did only one thing - destroy villi in the small intestine thus making it impossible to absorb nutrients. This causes rejection of food and malnutrition. Anyway, the reason I am here: I recently saw a gastroenterologist as I had a stomach ache for a couple of weeks and was worried. I had various test that thankfully showed a healthy digestive system along with healthy villi. I then asked him about my condition saying if I eat gluten I don’t notice any symptoms. People say 'you have to stay gluten free for life’ etc.etc. What’s the deal? His view was - Well, maybe you don’t have Coeliac disease and we could check to confirm it. He has recommended the following action: Get blood test now to confirm antibody is negative. Start 5 weeks of eating gluten - 100g / day of wheat. Test again for the antibodies If still negative get a biopsy to be sure. If negative then you are not a coeliac. This seems to go against what I’ve read here. I am surprised that being Coeliac is a vague thing these days. As an infant I would have died presumably if it was ignored but it seems people wander around for years with it not realising they have it. Very different to what I understood it to be. So perhaps I really do still have it. So until today I was thinking I was about to walk away from the diet clear of the disease. I think taking the gluten challenge and tests may be good for me though. If it is positive then it will give me the cue to stick properly to the diet.
  9. Celiac.com 10/24/2012 - Doctors can face challenges when attempting to diagnose celiac disease in patients who have already begun a gluten-free diet, and/or when the results of tests are inconsistent. To better understand this problem, a group of researchers set out to assess the benefits of an in vitro gliadin challenge. The research team included Raffaella Tortora, MD, Ilaria Russo, PhD, Giovanni D. De Palma, MD, Alessandro Luciani, PhD, Antonio Rispo, MD, Fabiana Zingone, MD, Paola Iovino, MD, Pietro Capone, MD and Carolina Ciacci, MD. The study cohort included 57 patients without celiac disease, 166 patients with untreated celiac disease, 55 patients with celiac disease on a gluten-free diet, and 59 patients with challenging diagnosis. The team provided all patients with endoscopy for collection of duodenal samples, which served for the diagnosis of celiac disease and for the in vitro evaluation of the gliadin-induced mucosal expression of seven inflammatory markers: PY99, ICAM-1 (intercellular cell adhesion molecule), HLA-DR, CD3, CD25, CD69, and transglutaminase 2 IgA. Diagnostic work-up for celiac disease included the search of specific serum antibodies. Researchers asked patients in the challenging diagnosis group to stop gluten-free diet to facilitate the search for these antibodies under untreated conditions. They used the area under the receptor-operated curve (ROC) for statistical analyses on accuracy. For patients with and without celiac disease (not including those on a gluten-free diet) HLA-DR offered the best accuracy for diagnosing celiac disease (area under ROC = 0.99). Combining the data from the HLA-DR with data of other markers did not increase test accuracy. The team found similar results in the 39 patients of the difficult diagnosis group undergoing the search celiac disease-speciï¬c antibodies under untreated conditions. In vitro testing of mucosal HLA-DR to gliadin is an accurate tool for the diagnosing celiac disease, and also works in patients who are hard to diagnose. Source: Am J Gastroenterol 2012; 107:111–117; doi:10.1038/ajg.2011.311; published online 27 September 2011
  10. Celiac.com 02/04/2013 - Ever wonder what happens to all those celiac disease patients who volunteer to do a gluten-challenge in the name of science? Well, the short answer is that they likely suffer, and may incur gut damage, at least in the short term. A team of researchers looking for ways to reduce or eliminate that problem recently conducted a study using larazotide acetate, a first-in-class oral peptide that prevents tight junction opening, and may reduce gluten uptake and associated problems. The research team included C. P. Kelly, P. H. R. Green, J. A. Murray, A. DiMarino, A. Colatrella, D. A. Leffler, T. Alexander, R. Arsenescu, F. Leon, J. G. Jiang, L. A. Arterburner, B. M. Paterson, R. N. and Fedorak. They are affiliated with the Celiac Center of Beth Israel Deaconess Medical Center at Harvard Medical School in Boston, the Celiac Disease Center at Columbia University in New York, NY, the Division of Gastroenterology and Hepatology at the Mayo Clinic in Rochester, MN, Thomas Jefferson University Hospital in Philadelphia, PA, the Pittsburgh Gastroenterology Associates in Pittsburgh, PA, with Gastrointestinal Specialists of Troy, MI, the Department of Internal Medicine at the University of Kentucky, in Lexington, KY, with Alba Therapeutics Corporation in Baltimore, MD, and with the Division of Gastroenterology at the University of Alberta in Edmonton, AB. The team wanted to find out how well larazotide acetate worked and how well it was tolerated by celiac disease patients undergoing a gluten challenge. To do this, the team conducted an exploratory, double-blind, randomized, placebo-controlled study that included 184 patients who maintained a gluten-free diet before and during the study. After a gluten-free diet run-in, the team randomly divided patients into groups and gave them either larazotide acetate in doses of 1, 4, or 8 mg three times daily, or a placebo. Both groups also received 2.7 grams of gluten daily for six weeks. The team then assessed ratios of lactulose-to-mannitol (LAMA), an experimental biomarker of intestinal permeability, and measured clinical symptoms by Gastrointestinal Symptom Rating Scale (GSRS) and anti-transglutaminase antibody levels. They found no significant differences in LAMA ratios between larazotide acetate and placebo groups. Larazotide acetate 1-mg limited gluten-induced symptoms measured by GSRS (P = 0.002 vs. placebo). They did find that the average ratio of anti-tissue transglutaminase IgA levels was 19.0 over baseline in the placebo group compared with 5.78 (P = 0.010) in the 1mg larazotide acetate group, 3.88 (P = 0.005) in the 4mg larazotide acetate group, and 7.72 (P = 0.025) in the 8mg larazotide acetate group. Both the larazotide acetate and placebo groups showed similar rates of "adverse events." Overall, the team found that larazotide acetate reduced gluten-induced immune reactivity and symptoms in celiac disease patients undergoing gluten challenge and was generally well tolerated. However, the team found no significant difference in LAMA ratios between the larazotide acetate and placebo groups. Even though they did not find anything revolutionary, the results and design of their study will likely be helpful in shaping future gluten-challenge studies in patients with celiac disease. Source: Aliment Pharmacol Ther. 2013;37(2):252-262.
  11. For 10 years, I was STRICT, absolutely NO cheats whatsoever, but I ate crackers at a party last month thinking they were gluten-free, discovering they were not after I had eaten a few. I waited a month, expecting to become ill, or at the very least, have DH, but when I didn't have symptoms, I guess I started experiencing all the second guessing someone who might have been eating a gluten-free diet for a only a few weeks, or months, or a couple of years, the second guessing that I never had during my ten years of complete abstinence because I remember how crappy I felt when I made the commitment that I never looked back on, until this past month. Now that I have fallen off the wagon, and have fallen hard, I am feeling quite perplexed that I haven't become ill, because it only took so little in the past when inadvertently exposed. With the encouragement of a post from another member, I've decided since all the past tests I've had have come out negative (most likely because I wasn't eating gluten at the time), that I can take my fall from grace and utilize the experience to perform a gluten challenge. How long is long enough, and because it has been 10 years for me, would it take longer for my system to become affected, than say, someone who has only been gluten free for a couple of years?
  12. Celiac.com 08/10/2012 - A diagnosis of Celiac disease is measured mainly by an adverse response to gluten, yet there is very little in the way of data regarding gluten challenge in adults on a gluten-free diet. A research team recently studied the kinetics of histological, serological, and symptomatic responses to gluten challenge in adults with celiac disease. The research team included D. Leffler, D. Schuppan, K. Pallav, R. Najarian, J.D. Goldsmith, J. Hansen, T. Kabbani T, M. Dennis, and C.P. Kelly. They are affiliated with Beth Israel Deaconess Medical Center in Boston, Massachusetts. For their study, the team wanted to address a lack of data regarding the kinetics of responses to gluten, which causes assessment issues in clinical practice and research when gluten-challenge is performed. For their study, the researchers recruited twenty adults with biopsy-proven coeliac disease. For each participant, the team conducted two run-in visits followed by a 14-day gluten-challenge at a randomly assigned dose of 3 or 7.5 g of gluten/day. Patients visited study team doctors at 3, 7, 14 and 28 days after the start of their gluten challenge. The researchers performed duodenal biopsy during the run-in and at days 3 and 14 of gluten challenge. The team used two pathologists to measure villous height to crypt depth ratio (Vh:celiac disease) and intraepithelial lymphocyte (IEL) count/100 enterocytes. Upon each visit, the team also assessed antibodies to tissue transglutaminase and deamidated gliadin peptides, lactulose to mannitol ratio (LAMA) and any physical symptoms. Compared to the initial data, results after 14 days showed substantially lower Vh:celiac disease (2.2-1.1, p Interestingly, gastrointestinal symptoms increased significantly after three days, but had returned to baseline by day 28. There were no differences between the higher and lower gluten doses. The team concludes by noting that a 14-day gluten challenge at or above 3 g of gluten/day triggers cellular, tissue, and blood changes in most adults with celiac disease. These findings will help researchers create more accurate clinical trials, and show that many individuals will meet celiac diagnostic criteria after a basic 2-week gluten challenge. Source: Gut. 2012 May 22.
  13. Celiac.com 08/13/2012 - Research has indicated that giving small amounts of wheat-rich food to people with celiac disease, who are on a gluten-free diet, will trigger interferon (IFN)-γ-secreting T cells in the bloodstream. These T cells react to gluten, and can be easily detected. However, very little is known about how this procedure might be reproduced in the same patient groups that underwent two, or more, gluten challenges. A team of researchers recently set out to assess the reproducability of this short wheat challenge method for detecting immune an response to gluten. The research team included A. Camarca, G. Radano, R. Di Mase, G. Terrone, F. Maurano, S. Auricchio, R. Troncone, L. Greco, C. Gianfrani. They are affiliated with the Institute of Food Sciences-CNR, Avellino Department of Paediatrics and European Laboratory for the Investigation of Food-Induced Diseases, University of Naples, Naples, Italy. They evaluated fourteen celiac patients in remission who consumed wheat bread for 3 days, along with thirteen patients who underwent a second gluten challenge after 3-10 months on a strict gluten-free diet. The team then analyzed the immune reactivity to gluten in peripheral blood by detecting IFN-γ both before and 6 days after patients began a a gluten-inclusive diet. They found that gliadin-specific IFN-γ-secreting CD4(+) T cells increased significantly by day 6 of the first challenge. These cells arose as prevalently human leucocyte antigen (HLA)-DQ restricted and with a phenotype of gut homing, as suggested by the expression of β7-integrin. They also saw a reaction to gliadin after the second wheat consumption, although the responses varied by individual at each challenge. The study showed that a short wheat challenge offers a non-invasive approach to investigate the gluten-related immune response in peripheral blood of people who are sensitive to gluten. Moreover, the study showed that the procedure can be reproduced in the same subjects after a gluten wash-out of at least 3 months. The results of this study mean that we can likely expect this procedure to find its way into clinical practice in the future. Source: Clinical and Experimental Immunology. 2012 Aug;169(2):129-36. doi: 10.1111/j.1365-2249.2012.04597.x.
  14. Troncone R, Greco L, Mayer M, Mazzarella G, et. al. Gastroenterology, 1996; 111: 318-324 The final paragraph says: In conclusion, our data show that approximately half of the siblings of patients with celiac disease show signs of sensitization to gluten as they mount an inflammatory local response to rectal gluten challenge. The genetic background and the clinical meaning of such gluten sensitivity need to be established. Further studies, particularly at the jejunal level, are necessary before deciding if any action is to be taken in this subset of first-degree relatives.
  15. This article appeared in the Autumn 2005 edition of Celiac.coms Scott-Free Newsletter. Celiac.com 01/11/2006 - There is an abundance of stories about people who begin a gluten-free diet, find that they feel better then decide they want a firm diagnosis of celiac disease. They are facing several problems. First, they may be gluten sensitive without the intestinal lesion of celiac disease. This is very likely since about twelve percent of the population is gluten sensitive, but only a little more than one percent of the general population has celiac disease. Another problem faced by gluten-free individuals who want a diagnosis is that it can take more than five years after returning to a regular gluten-containing diet before the characteristic damage of celiac disease can be seen on a biopsy1. Simply put, after beginning a gluten-free diet, only a positive biopsy is meaningful. A negative biopsy does not rule out celiac disease. A variety of opinions have been offered regarding how much gluten, for how long, should result in a definitive biopsy. The reality is that no such recommendation is consistent with the medical literature1-4. Some people with celiac disease will experience a return of intestinal damage within a few weeks of consuming relatively small amounts of gluten. Such brief challenges are valuable for these individuals. However, many people with celiac disease or dermatitis herpetiformis will require much larger doses of gluten, over much longer periods, to induce characteristic lesions on the intestinal wall. Unfortunately for these latter individuals, a negative biopsy after a brief gluten challenge can, and often is, misinterpreted as having ruled out celiac disease. Blood tests can compound this problem. If, as seems likely, celiac patients who are slow to relapse are also the ones who develop milder intestinal lesions, they are the very celiac patients for whom blood tests are very unreliable5. Claims to have ruled out celiac disease based on brief challenges with small quantities of gluten is a mistake that could lead to serious, even deadly, consequences. We may forget that gluten consumption by a person with celiac disease can lead to deadly cancers and a variety of debilitating autoimmune diseases. Any recommendation of a gluten challenge should be accompanied by a clear warning that the process may overlook many cases of celiac disease. The absence of such warnings is inexcusable. And what about non-celiac gluten sensitivity? The absence of an intestinal lesion does not rule out gluten induced damage to other tissues, organs, and systems. Evidence and research-based information in this area is sadly lacking but we do know that undigested or partly digested gliadin can damage a wide range of human cells6. Thus, one need only be consuming gluten and experience increased intestinal permeability for gluten-induced damage to be a factor in an almost infinite number of ailments. There are several partial answers to this problem. One, which Ive raised before, is to employ Dr. Michael N. Marshs rectal challenge for the diagnosis of celiac disease, particularly when the individual has already begun a gluten-free diet. This test permits a definitive diagnosis of celiac disease for up to six months after beginning a gluten-free diet. That would catch a great number of celiac patients who have found relief through a gluten-free diet and now want a diagnosis. Another piece of this puzzle is to test for IgG anti-gliadin antibodies. Although these antibodies are considered "non-specific," they inarguably identify an immune response to one of the most common foods in a regular North American diet. Although these individuals may experience improved wellness on a gluten-free diet, we just dont know enough about non-celiac gluten sensitivity to do more than recommend that they continue on this diet since it makes them feel better. Ron Hoggan is an author, teacher and diagnosed celiac who lives in Canada. His book "Dangerous Grains" can be ordered at Celiac.com. Rons Web page is: www.DangerousGrains.com. References: Kuitunen P, Savilahti E, Verkasalo M. Late mucosalrelapse in a boy with coeliac disease and cows milk allergy.Acta Paediatr Scand.1986 Mar;75(2):340-2. Bardella MT, Fredella C, Trovato C, Ermacora E, Cavalli R, Saladino V, Prampolini L. Long-term remission in patients with dermatitis herpetiformis on a normal diet. Br. J. Dermatol. 2003 Nov;149(5):968-71. Shmerling DH, Franckx J. Childhood celiac disease: a long-term analysis of relapses in 91 patients.J Pediatr Gastroenterol Nutr. 1986 Jul-Aug;5(4):565-9. Chartrand LJ, Seidman EG. Celiac disease is a lifelong disorder. Clin Invest Med. 1996 Oct;19(5):357-61. Rostami K, Kerckhaert J, von Blomberg BM, Meijer JW, Wahab P, Mulder CJ. SAT and serology in adult coeliacs, seronegative coeliac disease seems a reality.Neth J Med. 1998 Jul;53(1):15-9. Hudson DA, Cornell HJ, Purdham DR, Rolles CJ. Non-specific cytotoxicity of wheat gliadin components towards cultured human cells.Lancet. 1976 Feb 14;1(7955):339-41.
  16. The following post if from Karoly Horvath, M.D., khorvath@POL.NET, who is one of the two directors of the celiac center at University of Maryland in Baltimore. Q: Does that mean I could be getting damage without knowing it because I have no obvious reaction? A: Based on our studies a typical (biopsy proven flat mucosa, proved immune reactions to gluten) gluten intolerant patient does not react immediately with clinical symptoms for a gluten challenge (J Pediatr Gastroenterol Nutr 1989, 9:176-180). However, ingestion of GRAMS OF GLUTEN causes several changes in the intestine. There is an accumulation of inflammatory cells One cell type -so called mast cells- releases factors which factors in long-term damage the villi and they also release a factor which; Increases the permeability -leakiness- of the intestine, which is a temporarily change after a single ingestion but may be permanent after repeat dietary mistakes. Karoly Horvath, M.D., Ph.D., Baltimore