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  1. Hello everyone. My name is Chris and I just signed up for the forum. It’s a little late at night for me right now but I wanted to take the time to introduce myself. I’m actually very new to using a forum and I’m not quite sure about how much I should disclose about myself online. However, with that said, I’m looking forward to meeting new people and discussing issues with fellow Celiacs. For starters, I was diagnosed in 2007 and have been on a gluten-free diet since. Currently, I am in my last semester of college and plan to graduate in May. As I’m sure we all have been before, my journey to being diagnosed was a little too long for my liking and has caused me to feel some of the worst pain I’ve ever felt in my life. With that said, however, I consider myself extremely lucky and thankful that I do not have something much worse. We found out that the gene is linked to my father’s side of the family, as one of my distant cousins also has Celiac disease. Not to get too personal right off the bat, but I don’t mind sharing that even after being diagnosed, while feeling leaps and bounds better prior to being diagnosed, there have been periods throughout my life afterwards where I still get similar symptoms from time to time, though certainly not to the degree like before. Mostly just cramps before having to use the washroom and along with that some anxiety/sense of panic. I’ve found that to be the hardest thing to learn how to deal with properly and continues to be a bit of a struggle for me. Currently, I’m undergoing some additional testing to rule out other possible conditions. I will be more than happy to update you all once I get the results back. I’ve always been curious to ask other Celiac disease suffers if they still deal with any anxiety or stress about their disease, specifically when it comes time for the daily constitutional. I’ve always been pretty neurotic about my washroom habits and still deal with some pain right before a BM. I’ve always wondered if other Celiacs deal with the same thing and had any advice on how to control yourself and not panic when the pain/anxiety sets in. Hopefully this wasn’t too long an introduction. Thanks for taking the time to read it. I am really looking forward to contributing and chatting with you all. Best of luck. See you all soon. Chris.
  2. Hi all, Forgive the presumption. I don't have anything near the experience or knowledge base of others here, however I wonder if there's a need for an Intro post for the pre diagnostic board that could serve a similar purpose to this one: The same questions come up again and again, so this could save some time for users helping new members as long as they agree with the 'stock' answers. I have some time on my hands and want to put something back here having been the recipient of your collective support, so I thought I'd have a go at a draft. If you think the forum is better off without such a post (perhaps with a simple stickied redirect to a bona fide medical site) instead then by all means say so. If however it's a good idea in your opinion. feel free to tear it apart and correct as you see fit. ------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- Welcome to the forum. If you're in this section, or have been directed here, you've yet to be diagnosed but may suspect that Celiac or gluten could be an issue for you. Please note that we are not medical professionals and although happy to share our experience and support you should at all times seek medical advice rather than relying on internet based sources. That said, we'll do our best to answer any question you have, just start a topic, but before you post please take a look at the following answers and links to see if they help answer your questions. I have symptoms X,Y and Z could I have Celiac or Gluten sensitivity? We don't know! No-one here can diagnose you via an online post, however detailed or however much your symptoms suggest a connection. Diagnosis is something for you to explore with your Doctor. What we can tell you is that as Celiac affects the auto immune system it can present in a lot of different ways or none, here's a short summary: http://www.cureceliacdisease.org/symptoms/ and here's a much longer list of associated conditions: https://glutenfreeworks.com/gluten-disorders/symptom-guide/ I don't feel well, should I give up gluten to see if that's the problem? Giving up gluten shouldn't be your first port of call, that would be your doctor! Even if you're right to suspect gluten, an accurate diagnosis of Celiac requires the patient to be consuming gluten. If you remove it beforehand you may have a much harder time finding out if gluten really is a problem for you. Also, the Gluten Free diet can be tricky to follow and it may be that you don't need to be quite so restrictive. There is evidence to suggest that other foods may be to blame for symptoms: http://bottomlineinc.com/before-you-give-up-gluten-try-a-low-fodmap-diet/ but you won't find out if you remove gluten first. I've already excluded gluten and feel better on the gluten-free diet, should I still get tested? This is something you will have to decide for yourself, preferably after a discussion with your doctor. The benefits of testing may include recognition and additional ongoing support from the medical community, further testing for malabsorption, monitoring of intestinal damage and recovery, access to dietician advice and automatic testing for close relatives who may have undiagnosed celiac. The validation of a positive test may also be helpful in maintaining the gluten-free diet for life without exceptions. Why do I need to eat gluten to get tested? Celiac involves an immune system reaction to gluten. The blood tests measure levels of antibodies in the blood. If gluten isn't present prior to testing those antibody levels could be affected and the test may result in a false negative. Most doctors recommend at least 8 weeks of gluten exposure prior to blood testing and at least 2 weeks for biopsy. How much gluten do I need to eat for the test to work? There doesn't appear to be a consensus on the level of gluten required, so you're best bet is to discuss with your doctor. Further information on a gluten challenge is available here: https://www.verywell.com/whats-involved-in-a-gluten-challenge-562708 What tests should I request? Tests differ with some labs not offering all the available tests. Ask your doctor or gastro enterologist to outline which tests they use. These are the current markers which should be tested: Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Total Serum IgA I went through testing and got a negative result, should I forget about gluten? If you've exhausted the diagnostic process and have a negative result for celiac you may still want to try diet changes to see if they help with symptoms. Estimates suggest between 0.5% and 6% of the population may suffer from non celiac gluten intolerance: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820047/ You may not have to give up gluten however: http://bottomlineinc.com/before-you-give-up-gluten-try-a-low-fodmap-diet/ If you've finally decided to give up gluten keep a food diary to help track any intolerances and see the celiac newbie thread for help with the gluten-free diet: Other resources: https://www.coeliac.org.uk/coeliac-disease/coeliac-disease-faqs/ - a collection of questions and answers from a UK based Celiac organisation https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/ - a guide to the diagnostic process from a UK perspective. http://www.cureceliacdisease.org/screening/ - Advice from the University of Chicago's Celiac Disease Centre https://health.ucsd.edu/specialties/gastro/areas-expertise/Pages/celiac-disease-clinic.aspx - Advice from University of California, San Diego Celiac centre http://www.celiac.ca/?page_id=128 FAQ from Canadian Celiac Society https://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/ - screening info from celiac.org http://www.beyondceliac.org/celiac-disease/get-tested/ - Testing info from Beyond Celiac
  3. Celiac.com 03/30/2016 - New guidelines reverse previous recommendations on infant gluten introduction to prevent celiac disease. What's going on? New evidence shows that the age of introduction of gluten into the infant diet, or the practice of introducing gluten during breast-feeding, does not reduce the risk of celiac disease in infants at risk. Two earlier studies did claim to show that the time of introduction to gluten had an impact on later development of celiac disease. Based on those studies, in 2008, ESPGHAN issued a recommendation to introduce gluten into the infant diet between 4 months and 7 months, and to introduce gluten while the infant is still being breastfed. But since then, two randomized controlled trials have shown that the age at gluten introduction does not affect overall rates, nor does it affect the incidence or the prevalence of celiac disease during childhood. The latest findings show that "primary prevention of celiac disease through nutritional interventions is not possible at the present time," says Professor Szajewska of The Medical University of Warsaw, the lead author of the new guidelines. These new guidelines say that parents may introduce gluten into their infant's diet anytime between four to twelve months of age, and that the introduction does not need to be made via breastfeeding. It remains true that, according to study data, earlier gluten introduction does cause the celiac disease to present at an earlier age. However, current evidence indicates that neither breastfeeding, nor breastfeeding during gluten introduction can reduce the risk of celiac disease. The new evidence shows no difference in celiac disease risk when gluten is introduced while the infant is still breast-feeding, compared to after weaning. Because breastfeeding has many other health benefits, doctors recommend it for all infants, regardless of celiac disease risk. The updated recommendations are based on studies of infants with known risk genes for celiac disease. However, because parents don't often know this at the time solid foods are introduced, the recommendations apply to all infants. Source: Wolters Kluwer Health, January 19, 2016
  4. Celiac.com 12/14/2015 - Recently, several studies have set out to determine how intake of gluten during infancy influences later risk of celiac disease. One such study, conducted in Sweden, investigated whether gluten intake before 2 years of age increases the risk for celiac disease in genetically susceptible children. The research team included Carin Andrén Aronsson, Hye-Seung Lee, Sibylle Koletzko, Ulla Uusitalo, Jimin Yang, Suvi M. Virtanen, Edwin Liu, Åke Lernmark, Jill M. Norris, and Daniel Agardh. They are variously affiliated with the Digestive Health Institute, Children's Hospital Colorado, University of Colorado Denver, Aurora, Colorado, the Department of Epidemiology, Colorado School of Public Campus, University of Colorado Denver in Aurora, Colorado, the Department of Clinical Sciences at Lund University and Skåne University Hospital in Malmö, Sweden, with Dr. von Hauner Children's Hospital, Ludwig Maximilians University in Munich, Germany, the National Institute for Health and Welfare, Nutrition Unit in Helsinki, Finland, the School of Health Sciences, University of Tampere, Finland, the Research Center for Child Health, Tampere University and University Hospital, Science Center of Pirkanmaa Hospital District, University of Tampere, Finland, and with the Health Informatics Institute, Morsani College of Medicine, University of South Florida, Tampa, Florida. The research team conducted a case-control study of 436 pairs of children, generated from a Swedish database of 2525 children with genetic susceptibility to celiac disease, matched for sex, birth year, and HLA genotype from September 2004 to February 2010. The children were screened each year for celiac disease using an assay for tissue transglutaminase autoantibodies (tTGAs). To confirm celiac disease, the team conducted intestinal biopsy on children who tested positive for tTGA. The team also calculated gluten intake from 3-day food records collected when the children were 9, 12, 18, and 24 months old. The results showed that the duration of breastfeeding, lasting 32 weeks, on average, and average age at first introduction to gluten of 22 weeks was basically the same for the target group and the tTGA-negative control group. At the visit prior to tTGA seroconversion, the target group reported a larger intake of gluten, 4.9 grams a day, compared to 3.9 grams a day for controls (odds ratio [OR], 1.28; 95% confidence interval [CI], 1.13–1.46; P = .0002). More of the target group consumed amounts of gluten in the upper third tertile (ie, >5.0 g/d) before they tested positive for tTGA seroconversion compared to control subehects (OR, 2.65; 95% CI, 1.70–4.13; P < .0001). Interestingly, this increased risk was similar for children homozygous for DR3-DQ2 (OR, 3.19; 95% CI, 1.61–6.30; P = .001), heterozygous for DR3-DQ2 (OR, 2.24; 95% CI, 1.08≥4.62; P = .030), and for children not carrying DR3-DQ2 (OR, 2.43; 95% CI, 0.90–6.54; P = .079). Intake of gluten before 2 years of age at least doubles the risk of celiac disease in genetically susceptible children. This association was uniform among HLA-DR3-DQ2 haplotypes. These findings may be taken into account for future infant feeding recommendations. So, basically, if kids have a genetic susceptibility to celiac disease, regardless of their genetic haplotypes, then parents should wait until after 2 yearss of age to introduce gluten into the child's diet. This study, taken together with another recent study that shows that introduction of gluten after six months of age might promote an increased risk of celiac disease, might help provide some guidance for parents looking to introduce gluten to their children's diets. The earlier study, the children did not have a genetic predisposition to celiac disease. That means that, according to research, the best window for optimal gluten introduction is after two years, especially for children with genetic predisposition, and before six months, regardless of genetic status. SOURCE: Clinical Gastroenterology and Hepatology, October 07, 2015. DOI: http://dx.doi.org/10.1016/j.cgh.2015.09.030
  5. Hello everybody, I went looking for a site to log my experiences and found this one yesterday that seems to be the closest to what I'm experiencing, so here I am introducing myself today. I am in my late 50's and have battled with weight and body image all my adult life. Consequently, I have been on many different diets over the years. Some people who know me will say that this is "just another diet" and in all fairness to them, I can't say I know they are 100% wrong. However, before, my diets have always been about losing weight. This time I want to see if my aching joints and fatigue go away. Those are my most prominent complaints at this time. About a year and a half ago I gained some weight because I quit following the low-carb diet that I'd been on. Then I discovered the classic Lyme disease ring on my leg after having been out raking leaves. I had a test (which came back negative), but my hips began to really bother me a lot. I blamed it on the weight for a while. (I'm not talking a huge amount of weight, maybe 20 pounds...) So, I had a second test done last winter as they had suggested I do if the first test was negative. At the time of the second test, I had also begun to be tired all the time. So they tested for Lupus also. Both tests came back negative. I started entering symptoms into Google and gluten-sensitivity kept coming up. Over the years I've had chronic UTI's. My ovaries would not work on their own, so I took fertility drugs to be able to conceive. I have two children, but lost three. I have a very hard time sleeping due to the hip pain. I have never been able to grow nice nails. My skin is dry and itchy most of the time. I'm hungry a lot - even when I'm not on a diet - or maybe it's even worse when I am not on a diet. I have a "sweet tooth". I have suffered with constipation most of my life. (I have developed a fondness for glycerin suppositories over the years. Sorry, if that's TMI.) Often in the evenings I need to unzip my pants or go get into my nightie to be comfortable due to the belly bulging (that wasn't so bad earlier in the day). Probably there are more symptoms that I am forgetting, but that's a good start. So... What the heck is wrong with me? Could it be I've been gluten-intolerant all these years? So, I just bought a book, The Gluten Connection, and, having read less than half of it so far, it seems like some things are starting to click. Or is it just my crazy mind latching onto yet another diet scheme? I'm not ready to go to the doctor's (long story, maybe another time...) and have testing done yet, -- which could be false negative anyway, right? So, I'm thinking, what's the harm in going gluten-free for a few weeks or months to see if things improve. Isn't that really the best test, anyway? That brings me to logging my experiences. I've read some things on this site that encouraged me to choose to post here. I hope that's alright. I'm very open to feedback. Thanks for "listening".
  6. Celiac.com 10/31/2014 - The relationship between the risk of celiac disease and both the age at which gluten is introduced to a child’s diet and a child’s early dietary pattern is unclear. A team of researchers set out to examine how the introduction of dietary gluten and HLA status impact the risk of celiac disease in children. The research team included Elena Lionetti, M.D., Stefania Castellaneta, M.D., Ruggiero Francavilla, M.D., Ph.D., Alfredo Pulvirenti, Ph.D., Elio Tonutti, M.D., Sergio Amarri, M.D., Maria Barbato, M.D., Cristiana Barbera, M.D., Graziano Barera, M.D., Antonella Bellantoni, M.D., Emanuela Castellano, M.D., Graziella Guariso, M.D., Maria Giovanna Limongelli, M.D., Salvatore Pellegrino, M.D., Carlo Polloni, M.D., Claudio Ughi, M.D., Giovanna Zuin, M.D., Alessio Fasano, M.D., and Carlo Catassi, M.D., M.P.H. They are variously affiliated with the Departments of Pediatrics (E.L.) and Clinical and Molecular Biomedicine (A.P.), University of Catania, the Department of Pediatrics, San Paolo Hospital (S.C.), and the Department of Developmental Biomedicine, University of Bari (R.F.), Bari, the Department of Immunopathology and Allergology, Udine Hospital, Udine (E.T.), the Department of Pediatrics, Azienda Ospedaliera IRCCS Santa Maria Nuova Hospital, Reggio Emilia (S.A.), the Department of Pediatrics, Sapienza University of Rome, Rome (M.B.), the Department of Pediatrics, University of Turin, Turin (C.B.), the Department of Pediatrics, San Raffaele Hospital (G.B.), and the Department of Pediatrics, Vittore Buzzi Children’s Hospital, Milan (G.Z.), the Department of Pediatrics, Bianchi Melacrino Morelli Hospital, Reggio Calabria (A.B.), Pediatric Gastroenterology Unit, Giannina Gaslini Institute, Genoa (E.C.), the Department of Pediatrics, University of Padua, Padua (G.G.), the Department of Pediatrics, Federico II University of Naples, Naples (M.G.L.), Pediatric Gastroenterology and Cystic Fibrosis Unit, University Hospital Gaetano Martino, Messina (S.P.), the Department of Pediatrics, Rovereto Hospital, Rovereto (Trento) (C.P.), the Department of Pediatrics, University of Pisa, Pisa (C.U.), and the Department of Pediatrics, Marche Polytechnic University, Ancona (C.C.) — all in Italy; and the Division of Pediatric Gastroenterology and Nutrition and Center for Celiac Research, MassGeneral Hospital for Children (A.F.), and the Celiac Program, Harvard Medical School (A.F., C.C.) — both in Boston. For their study, the team randomly divided 832 newborns who had first-degree relatives with celiac disease into groups that received their first dietary gluten at 6 months (group A) or 12 months (group . The team determined HLA genotype at 15 months of age, and conducted serologic screening for celiac disease at 15, 24, and 36 months, and again at 5, 8, and 10 years. Patients with positive serologic findings received intestinal biopsies. The primary focus was on rates of celiac disease autoimmunity and of overt celiac disease among the children at 5 years of age. A total of 707 children completed the 36 month trial. Of those, 553 had a standard-risk or high-risk HLA genotype and completed the study. At 2 years of age, substantially higher percentages of children in group A than in group B had celiac disease autoimmunity (16% vs. 7%, P=0.002) and overt celiac disease (12% vs. 5%, P=0.01). At 5 years of age, there were no longer significant differences between the groups in terms of autoimmunity (21% in group A and 20% in group B, P=0.59) or overt disease (16% and 16%, P=0.78 by the log-rank test). At 10 years, the risk of celiac disease autoimmunity was far higher among children with high-risk HLA than among those with standard-risk HLA (38% vs. 19%, P=0.001), as was the risk of overt celiac disease (26% vs. 16%, P=0.05). Other variables, including breast-feeding, were not associated with the development of celiac disease. So, the short take away here is that, according to this study, neither delayed introduction of gluten nor breast-feeding had any effect on celiac disease rates among at-risk infants. However, children who experienced later introduction of gluten showed a delay in the onset of disease. Lastly, the important predictor of disease was having a high-risk HLA genotype. Source: N Engl J Med 2014; 371:1295-1303October 2, 2014. DOI: 10.1056/NEJMoa1400697
  7. JAMA. 2005;293:2343-2351, 2410-2412 Celiac.com 05/31/2005 – Researchers in the United States have found that introducing gluten too early or too late in an infants diet may play a key role in whether or not they eventually develop celiac disease autoimmunity. From 1994 to 2004 the researchers followed 1,560 high-risk children (those with either HLA-DR3 or DR4 alleles, or with a first-degree relative with type 1 diabetes) who were periodically screened for celiac disease autoimmunity. Positive results were defined by two positive tissue transglutaminase (tTG) blood serum tests, or one positive tTG and a positive small bowel biopsy. The researchers conducted a prospective observational study in which the parents of the children in the study responded to a questionnaire regarding the timing of gluten introduction into their childrens diets. To avoid a bias on the answers the researchers purposely did not include children who already had celiac disease. During the mean duration period of the study (4.8 years), 51 children developed celiac disease autoimmunity. Their findings indicate that children who were first introduced to gluten when they were less than 3 months of age had a five-fold increased risk of developing celiac disease autoimmunity when compared to children who were first introduced to gluten at 4-6 months old. Additionally, those who were first introduced at 7 months or older had a marginally increased risk of getting celiac disease autoimmunity when compared with the same group. Based on these findings the researchers recommend that parents should introduce cereals into their childrens diets at 4-6 months of age—even though this conflicts with recent recommendations by the American Academy of Pediatrics, who recommend breast-feeding only until 6 months of age. The researchers stress that much larger international prospective studies need be done in this area to answer the many questions that this study raises.
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