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Found 14 results

  1. Can I be cross contaminationed by purchasing resale items that have come in contact with gluten? Can I properly sanitize a bedding set without destroying the color/fabric? If so, how? I purchased a bedding set through a virtual yard sale, and my husband brought this question up. I've never thought of it in my 6 years as a diagnosed celiac. I couldn't find information about cleansing cloth (fully) from gluten, and I'd like to feel safe before picking the set up. Any info or direction would be greatly appreciated.
  2. My daughter was diagnosed with Celiac via endoscopy/biopsy and had other indicators such as blood counts and vitamin/mineral deficiencies. At first, it seemed that she was incredibly sensitive to any cross contamination. Now, several years later and well into recovery, she has gotten accidentally glutened several times with seemingly no adverse effects. Is that even possible? Could the initial diagnosis have been incorrect? Or once the gut has healed, can a Celiac sometimes tolerate occasional exposures better? Thank you for your insights.
  3. My daughter has her yearly GI specialist appointment in a couple weeks. She was diagnosed almost 3 years ago. She’s very strict with her eating but has still been having a lot of gut issues for at least the last 6 months. She spends a lot of time in the bathroom - usually diarrhea but occasionally constipation. She’s also very dizzy whenever she stands up or exercises. I was going to ask about testing for iron and other vitamin deficiencies but I wasn’t sure what other tests I should request. She did have Non-Hodgkin lymphoma a couple years before the celiac diagnosis and as a result had a bowel resection - so I may ask for an u/s just to recheck her bowels. Any other suggestions?
  4. Hi yall! New to this blog, but really glad it exists because I have lots of questions. First off, I'm Allie! I'm 17 and newly diagnosed Celiac after about 3 years of searching for answers. I initially went gluten-free on the recommendation of a friend, I felt better in about a month and then my pediatric gastroenterologist had me do the gluten challenge, and my symptoms were the worst they have ever been, and ones I barely noticed before became very present. I did the biopsy and was diagnosed, it's been about 2 weeks and my symptoms are still pretty bad, although my diet has no known sources of gluten or cross contamination. Wondering if anyone has any input on healing post gluten challenge, any tips or how long it took for you would be quite helpful! Thanks
  5. My daughter was diagnosed in 2010 when she was having 'belly issues', at the time she was only 3 years old. Her Dr. at the time basically called and said her blood test was positive for celiacs and set us up to see a pediatric gastroenterologist with Dartmouth Hitchcock. We saw the GI Dr. and opted to NOT have the biopsy done, just change her diet. (I figured why put her through that if just changing her diet will eliminate the symptoms.) She was on a gluten free diet for approx. 7 years and recently started re-introducing gluten into her diet. She has not complained of any 'belly issues' at all since adding gluten back into her diet. I have always doubted her diagnosis because of all the common symptoms she didn't have. She was a normal, healthy little girl, besides bellyaches, always within the 95th percentile on the growth charts for height and weight (we were told that failure to thrive was VERY common in young children with celiacs). I am beginning to question her initial diagnosis even more now that she is eating gluten and not seeming to have any issues with it. I have just recently obtained a copy of her initial lab resultsfrom 2010 and they are very hard to understand... Tissue Transglutaminase IGA = 1283.7 CU (states >30 CU is moderate to strong positive) Tissue Transglutaminase IGG = 7.2CU (states <20 is negative) Gliadin Peptide IGG (DGP) = 52CU (states <20 is moderate to strong positive Gliadin Peptide IGA (DGP) = 7CU (states <20 is negative) Immunoglobuun A = 57mg/dl (there is no range listed) She now has a new primary doctor and at my request we are having her labs repeated within the next week. I understand celiacs is not something you 'grow out of' but I always thought a parent had to have it as well. Neither I, dad or her sister have it. I'm just curious if someone can advise on the above lab results and if they seem correct. Thanks so much!
  6. oregonceliac

    How to order food safely

    Hey everyone, I'm a newly diagnosed celiac and have some social skills issues as well. While I've read other guides for how to order at restaurants, I was wondering if someone could write up specific questions to ask staff that I could use and memorize, as I'm not even sure what questions to be asking or how to phrase them the best (accurately, firmly, yet politely). Without some questions to ask, I tend to fumble my words and my needs don't get met or understood. I'd like to go out to a bar, for example, and I understand what ingredients are and aren't safe but am not sure what questions about cross contamination/shared kitchen use type stuff I should be asking. Would someone be willing to share the script they use for A.) going out to a new restaurant and B.) going to a bar? I would really appreciate the guidance. -G
  7. Celiac.com 12/05/2016 - Symptomatic suspected gluten exposure is common among patients with celiac disease on a gluten-free diet. A gluten-free diet is the only recommended treatment for celiac disease. Although anecdotal evidence suggests that suspected gluten exposure is common among celiac patients following a gluten-free diet, there is not a great deal of hard data to support that view. A team of researchers recently set out to assess the prevalence and characteristics of gluten reactions in people with celiac disease on a gluten-free diet. The research team included JA Silvester, LA Graff, L Rigaux, JR Walker, and DR Duerksen. They are variously affiliated with the St Boniface Hospital in Winnipeg, Canada, the College of Medicine at the University of Manitoba in Winnipeg, Canada, and with the Celiac Research Program at Harvard Medical School in Boston, MA, USA. Their team prospectively enrolled adults with biopsy proven, newly diagnosed celiac disease. They then conducted a survey related to diet adherence and reactions to gluten, both at study entry and at 6 months. To measure celiac disease symptoms and gluten-free diet adherence, they used T Celiac Symptom Index, Celiac Diet Assessment Tool (CDAT) and Gluten-Free Eating Assessment Tool (gluten-free-EAT). Of the 105 patients enrolled, 91% reported gluten exposure less than once per month, while the average CDAT score was 9 (IQR 8-11), which suggests good dietary adherence. Two out of three patients reported suspected symptomatic reaction to gluten. Most, 63 percent, did not suspect gluten consumption until a reaction occurred. Meanwhile, just under one-third (29 percent) reported that problems happened when ordering in a restaurant. Thirty percent of patients say that gluten was consumed from incidental contact, while 10 percent said it was due to eating a major gluten ingredient. Average time to symptom onset was 1 hour, though onset ranged from 10 minutes to 2 days. Symptoms lasted about 24 hours on average, and ranged from 1 hour to 8 days. Symptoms typically included abdominal pain (80%), diarrhea (52%), fatigue (33%), headache (30%) and irritability (29%). Even with good dietary compliance, most celiac patients following a gluten-free diet suffer from regular adverse reactions to gluten. Eating away from home continues to pose the major risks for accidental gluten exposure. The team recommends that physicians treating celiac disease patients should include regular questions regarding gluten reactions as part of their assessment of gluten-free diet adherence. Source: Aliment Pharmacol Ther. 2016 Sep;44(6):612-9. doi: 10.1111/apt.13725. Epub 2016 Jul 22.
  8. Hello everyone, after 2 years of symptoms I've finally decided to speak to my doctor. What a weight off my shoulders! He has booked me in for a blood test and I'll be given some sachets to mix in with water that may help me to go 'regular'. One of the nurses will do the blood test and I wanted to know, what should I ask whilst I am there!? I never go to the doctors, I'm quite healthy (apart from all the stomach problems I've been ignoring). Has anyone had a blood test and can tell me what to expect? Thank you, Shez
  9. Okay, so I have not had any type of testing, but I am looking for wisdom of those who have come before me and know a bit more than do I. So, here's the nitty gritty "boring" details - 36 yr old female, was born 2.5 months early but no health issues from birth. I was diagnosed with a 7mm Chiari Malformation Type 1 in 2010 (my boss called me a freak), had severe vertigo and no diagnosis as to why other than "retaining fluid, so no extra salt/soda," had at one point a leopard-spotted rash on my neck (Summer 2009), have had an un-diagnosed version of allergic contact dermatitis off/on since college - on hands, wrists and ankles (so itchy that scratch until the skin is damages dand peels off, then the skin turns numb), diagnosed with hypoglycemia in college, vitamin D deficiency diagnosed in 2012, according to allergist no known allergies, chronic sinus infections for 14+ years (had endoscopic sinus surgery in 2011), always tired, always easily bruised, geographic tongue, occasional itchy scalp that I can scratch till it bleeds/scabs, sinuses congested after eating grains. I know, that's a lot, but that's the background for the next part and my questions. Lately I've noticed that I go through alternating C and D episodes, increase in flatulence, feeling of fullness/bloating, my anxiety/depression has returned, inability to lose weight and I had an episode in the restroom at work where I thought I might either pass out or puke. So, here are my questions: 1) Might the hypoglycemia/geographic tongue/sinus infections all be good indicators of either gluten intolerance or gluten sensitivity? 2) Could the dermatitis issue I've had for about 18 years be another symptom? 3) The vertigo I've experienced off/on also for years has been attributed to salt and water retention - I'm wondering whether it might be a combo salt/gluten issue? I have not gone off gluten, and am seeing a doctor this Friday (Oct. 18). I am going to ask my doctor to update my bloodwork, and in addition to checking Vitamin D, I'm going to ask for the tests linked to gluten as well as thyroid levels. I'm wondering as to whether these "diagnoses" might instead be symptoms and linked to either gluten intolerance or sensitivity. I know I may be reaching, and that this is really asking for your educated guesses on all of this. If you have read all this, I sincerely thank you, because it hasn't been easy for me to write all this and put it out there.
  10. I would love to hear your responses to the following question. Question: What have been your biggest questions, challenges or concerns with going gluten-free? Thanks all for your insight!!!
  11. I get hundreds of e-mails each month from parents of kids newly diagnosed with celiac disease or beginning the gluten-free/casein-free dietary intervention program for autism or ADHD. I thought it would be helpful to share some of these e-mails with you... Dear Danna: My four-year-old son is autistic, and were trying the gluten-free/casein-free dietary intervention program. There are no health food stores near me, so I have to drive an hour to get all of his food. Also, its very expensive. I dont know if we can afford this diet. Do you have any suggestions? Lisa L. Dear Lisa: Dont feel locked into shopping at health food stores. With the exception of baked goods and mixes (bread, cakes, cookies, etc.), you can do most, if not all, of your shopping at a regular grocery store. You can even buy generics! The first thing you need to do is become familiar with the safe and forbidden ingredients. To learn whats allowed and whats forbidden on the gluten-free diet, there is an excellent list on www.celiac.com -- you may want to print it out and take it to the store with you. Then learn to read labels carefully. If the ingredients appear to be okay, call the manufacturer (theres usually a toll-free number on the package - I bring my cell phone into the store with me so I can call before I buy) to confirm that the product is, in fact, gluten-free/casein-free. Youll find that the list of things he can eat is a lot longer than the list of things he cant! Happy shopping.... Dear Danna: My daughter is six and has always had terrible diarrhea. My brother and I both have celiac disease, so I figured she does, too. I dont want her to have to go through all the testing, so Im going to put her on a gluten-free diet and see how she responds. How soon should we expect to see improvement? Pam F. Dear Pam: I know its tough to handle the thought of putting our kids through testing, but proper testing is essential. Your daughter must be on a gluten-containing diet in order for testing to be accurate, so I would urge you to get her tested quickly, before putting her on a gluten-free diet. Id recommend doing the antibody screen (a blood test) first; if its positive, Id encourage you to have an intestinal biopsy done on her. Believe me, I know its hard to put our children through these tests, but its important that you know for sure, and proper testing is crucial. Dear Danna: I suspect my nine-year-old nephew has celiac disease, but the doctors wont test him because hes in the 70th percentile for height and weight. He has gas and bloating, and occasional bouts of diarrhea. My brother (his dad) had celiac sprue as a child, but doctors told him he outgrew it. Drew S. Dear Drew: First, people dont outgrow celiac disease (celiac sprue). Decades ago it was thought that they did - but now we know that celiac disease is a lifelong condition (sometimes symptoms may appear to fade away, but damage is still being done to the small intestine). Your brother should be properly tested (testing is much better now than it was when he was a child). If he does have celiac disease, your nephew is at greater risk for having it, too, since celiac disease is a genetic (inherited) condition, and youre right to suspect it. Sometimes doctors are reluctant to test for celiac disease - its extremely important to demand testing - if the doctor wont test, find one who will. (By the way, my son was in the 75th percentile for height and weight when he was diagnosed - some adult celiacs are actually overweight.)
  12. I am new to this forum and have had possible symptoms for over a year - actually longer if I look back at my history. I have been to the doctors multiple times and still have not had the doctor agree to test for celiac. I have a "lump" in my upper right abdomen, but all testing has shown that everything in my upper abdomen in normal. I have had multiple ultrasounds and there appears to be nothing there. I also am unsure as to what a normal bowel movement is. I alternate between bouts of constipation and diarrhea and pretty much have for as long as I can remember – just thought that was normal. Most recently, I spent 8 hours last night/early this morning in the ER for sharp pains in my lower right abdomen. Didn’t think it would be related, but just had a friend tell me that they get lower right abdominal pain after eating gluten – which I realized is all I ate yesterday and also had a lot of since Christmas Eve :-/ They ruled out appendicitis and ovarian cysts, also kidney and liver issues based on ct scan, ultrasound, and blood work – that’s going to be a pretty penny. Hopefully tomorrow I can finally talk my primary care into doing some celiac testing, because I notice when I don’t eat gluten I am feeling much better. Any suggestions or recommendations would be greatly appreciated!
  13. Celiac.com 02/15/2010 - Just five simple questions can help you determine if your child needs a gluten-free diet, according to the a recent Danish study that aims to improve celiac disease diagnosis in children. Celiac disease is a disorder in which people suffer intestinal damage when they eat foods made with wheat, rye, or barley. Over the last five or six decades, rates of celiac disease have increased 400%. Worse still, at least half of kids with celiac disease never get diagnosed. That means they will continue to eat foods made with wheat, rye, or barley; and that they will suffer persistent symptoms such as diarrhea, abdominal pain, and behavior problems, along with intestinal damage, that are perfectly avoidable with a gluten-free diet. A simple blood test can tell doctors which kids most likely have celiac disease. But doing a blood test on every child is simply not practical. Would it be better to test just the kids who show one or more symptoms common to celiac disease? To answer that question, doctor Peter Toftedal, MD, of Denmark's Odense University Hospital, created a simple, five item questionnaire to help parents provide information on recurrent abdominal pain, chronic diarrhea, constipation, and lack of height and weight gain: Has your child ever suffered from abdominal pain more than twice during the last three months? Has your child ever had diarrhea lasting more than two weeks? Does your child have a tendency to firm and hard stools? Does your child gain enough weight? Does your child gain enough height? Toftedal's study team conducted a trial of the questionnaire in Denmark's County of Funen. They mailed it to the parents of 9,880 8- and 9-year-olds. Prior to mailing the questionnaire, just 13 children in Funen were known to have celiac disease.A total of 7,029 parents returned the completed questionnaire, with 2,835 reporting at least one symptom. The research team invited these children for a celiac blood screen. A total of 1,720 children submitted to screening, with 24 showing positive antibodies common with celiac disease. Additional testing confirmed 14 case of celiac disease among the children of Funen, meaning that only half of the kids with celiac disease had been diagnosed. When you factor in the additional 1,115 parents who did not report for screening, the result might be slightly higher. Toftedal and colleagues conclude that a number of "preclinical and low-grade symptomatic patients with celiac disease may be identified by their responses to a mailed questionnaire." Pediatrics, March 2010
  14. Celiac.com 02/25/2011 - In many parts of the world, recommendations by World Health Organization (WHO) regarding child nutrition are regarded as the scientific standard. So, any time a major health organization comes out with recommendations that differ from those made by WHO, there is always much discussion about the science behind both sets of recommendations, and, occasionally, some intellectual and scientific jousting from both sides. That was the case recently, when a magazine called BMJ (formerly the British Medical Journal) published new and controversial recommendations regarding breastfeeding. According to an article by Susan Perry on MinnPost.com, those recommendations, the resulting criticism from WHO, and BMJ reviewers' response make some excellent points about issues of conflict of interest in research. The recommendations by BMJ suggest that breast milk should be supplemented with solid foods starting around the age of four months, two months earlier than currently recommended by the World Health Organization (WHO). According to the reviewers, waiting to introduce solid foods increases a baby’s risk of developing anemia, food allergies and celiac disease. Those recommendations brought a strong response from WHO, which noted that its own decade-long no-solid-foods-until-six-months recommendation is “based on evidence that the early introduction of solid food to babies increases the risk of infection and disease.” The response from WHO then proceeds to refute each argument made by the BMJ reviewers. A response by Susan Perry to the spat appears on MinnPost.com, and makes some excellent points about issues of conflict of interest in research. Now, this debate between WHO and BMJ is a bigger deal in certain places than in others. The United States never officially adopted the WHO recommendation, as did the U.K. in 2003. Ironically, it seems that more American than British moms are following WHO standards. BMJ reviewers say that less than 1 percent of British mothers exclusively breastfeed their babies for six months. In the United States, that figure is 13 percent, as reported by the Centers for Disease Control and Prevention. However, that's a story for another day. But, a strong rebuttal from WHO is not the only problem facing the authors of the new BMJ review. A more pressing problem for BMJ study is that three of the four authors admit that they took funding within the past three years from companies that manufacture infant formula and baby food. Now, these researchers claim that their findings and recommendations are in no way influenced by their financial relationships with these companies: "My colleagues and I are independent pediatricians and scientists, funded by universities or hospitals, and we received no funding for doing this review other than our normal salaries,” review author, Mary Fewtrell, a child nutritionist at University College London told NatureNews reporter Natasha Gilbert. She adds that “all of us have had links with industry at some point. We are making no comment in our paper about what type of solid foods should be introduced — this could be home-prepared or commercial depending on the mum's choice — the main issue is that the food should be nutritionally adequate and safe." But financial connection between study authors and industry cannot fail to raise legitimate questions about the independence of study findings. Moreover, such a relationship creates a cloud of potential doubt over the nature of the findings. Indeed, the review itself indicates a strong desire within the baby food industry to get British health officials to change their current advice to mothers to breastfeed exclusively until six months if possible. Survey data shows that British mothers are slowly pushing back the age at which they introduce solid foods to their babies. Successive surveys since the 1970s show that nearly all UK infants receive solids by four months. The number in the 2000 survey, for example, was 85%. However, the 2005 figure drops to 51%, with mean age of introduction of solids at 19 weeks, a rise from 15 weeks in 2000. In view of the higher reported rates of exclusive breast feeding to six months elsewhere in the West (more than 30% in Hungary and Portugal, for example), it seems likely that the impact of the UK recommendation will be greater in 2010 than in 2005. It is timely to consider whether such trends could influence health outcomes. Susan Perry notes in her response that the study seems "extremely timely, therefore, for baby food companies to consider whether such trends are going to damage their bottom line — and to financially support, even if not always directly, the research efforts of "friendly" academics." That’s one example of why researchers who accept money from industry should be prepared to have their studies, methodologies, data and recommendations questioned — along with their motives. Source: MinnPost.com