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Found 99 results

  1. Celiac.com 10/06/2018 - In a recent discussion of Dangerous Grains, we (Mike and Ron) began to speculate about future prospects for those who are gluten sensitive. We talked about future directions for research into how gluten impacts on human health, the growing focus on celiac disease excluding gluten sensitivity, and whether grain consumption is a factor in health problems among those who are not gluten sensitive (according to currently available testing). This inevitably led to debate about whether gluten grains are harmful to all humans. In the context of this discussion, we agreed to write this article inviting further discussion of this matter and offering some suggestions to researchers and contributors to gluten-related research. These include several of our personal concerns and a number of questions that remain unanswered. Where is the research taking us? Perhaps the most important lesson that current research teaches is that a great deal more research is needed if we are to fully understand this ubiquitous hazard to human physical and mental health. There are several emerging trends in the research literature that warrant our attention and further investigation. For instance, celiac disease research has been conducted on the margins for so long that the recent, very rapid expansion of this field may have helped foster neglect of related and equally important research into non-celiac gluten sensitivity. Previous issues of the Scott-Free Newsletter have contained articles outlining the importance of extensive and appropriate testing (and subsequent dietary compliance) for those who have non-celiac gluten sensitivity as identified by a variety of tests including IgG ELISA testing for common food allergies. Further, our growing reliance upon endomysium or tissue transglutaminase antibody testing alone risks overlooking a significant portion of the population with celiac disease. Several reports indicate that in cases where serology testing is negative but symptoms and signs suggest celiac disease, a series of jejunal biopsies should also be taken and assessed by a pathologist who is familiar with celiac disease and uses the Marsh system for evaluating intestinal biopsies. Research into the oats question reveals that known toxic proteins in celiac disease are absent from oats. Yet one small study showed that a significant percentage of celiac patients will develop intestinal lesions characteristic of celiac disease from eating pure oats in the context of an otherwise gluten-free diet. This suggests that we have not yet identified all of the toxic proteins in gluten grains. Some current research is also aimed at developing similar grains without the toxic proteins found in regular gluten grains. The problems associated with oats research have a clear bearing on this issue as well. If celiac patients are developing intestinal lesions from pure oats, which have repeatedly been shown to lack the known toxic proteins, then we do not yet know all the harmful proteins. Thus, genetic development of “safe” wheat is not yet possible. Still, this research may help in the identification of additional toxic proteins. Current research has also led to a growing awareness, among the medical community and the general public, of the connections between gluten consumption and type I diabetes, epilepsy, thyroid disease, osteoporosis and a host of previously unsuspected autoimmune ailments. This is raising many questions about the potential value of a gluten-free diet as part of the treatment protocol for many of these ailments. Current research into zonulin may be one of the most exciting areas of investigation. The work of Dr. Fasano and many others in this important area may well lead to a better understanding of the impact of gluten on schizophrenia, attention deficit disorder, autism, bi-polar disorder, and a variety of ailments that have shown improvement on a gluten-free, dairy-free diet. Where would we like to see the research go? Gluten research is largely overlooked by many of today’s scientists. Despite the growing body of research that discredits gluten grains as healthy foods, the widespread, erroneous assumption of their nutritional value continues to foster gluten consumption. There is a pressing need to dispel the myths that protectively shroud this issue. Our first priority is to see a clear delineation of the gluten-derived proteins and peptides that are currently known to threaten human health. The next logical step would be to initiate an extensive investigation of the various other gluten proteins and peptides in order to identify all of the harmful substances in gluten. The relevance of gluten research reaches far beyond the concerns of academia and the individuals diagnosed with gluten sensitivity or celiac disease. We now know that many health problems could be wholly or partly the result of gluten, making this field worthy of investigation as well. The driving force for people to pursue research of these topics might well be found in a broader awareness of the preliminary findings that connect this wide variety of health conditions to gluten consumption. Further research into this field would reveal many aspects of our current lifestyle. For instance, why are we facing such a widespread variety and increasing rates of psychoses? And how does gluten relate to the multitude of diseases, seldom seen until the advent of agriculture? Gathering more information about gluten and its effect on both gluten sensitive and non-gluten sensitive individuals may provide a greater understanding of modern illnesses. For instance, Dr. Hadjivassiliou’s extensive investigations of neurological diseases of unknown origin, in association with gluten sensitivity, reveal several important research concerns which include: Does current testing identify all important immune reactions to gluten? What other, as yet unidentified proteins are toxic to celiac patients? How often is gluten sensitivity/celiac disease considered in the context of these related ailments? What portion of the population is at risk of developing gluten sensitivity? What portion of the population is at risk of developing celiac disease? What other problems may be associated with gluten consumption? What is the cost-benefit of our escalating consumption of gluten? What vested interests are inhibiting the widespread recognition of health hazards associated with gluten consumption? Concurrent with this research, we would like to see investment in the development of safe, healthy, alternative food sources. Realistically, everyone would probably be better off on a diet of fruits, vegetables, and various meats. But is this possible for the world’s overwhelming and growing population? The necessary resources, including the cost to the consumer, would be prohibitive by current standards and methods of food production. New, more efficient food sources must be found, developed, and widely adopted. These foods must be a better fit with our evolutionary adaptations. This search will require considerable investment and social resolve. What questions should have priority? The question on peoples’ minds is how the research will directly affect them. This means that the research will have to explain the relevance of gluten proteins to such diseases as cancer, autoimmune disorders, obesity and food addiction. Each of these food-related topics is a common concern, widely discussed, and a key topic for gluten-related research. The many applications of food addiction research will attract widespread attention and discussion. The current spotlight on dieting in the popular press reflects a great deal of personal concern, among the general public, regarding this topic. Cancer and autoimmunity have been examined in great detail and a universal cure is still a distant dream. Yet the high rate of gluten sensitivity among these patients suggests a pressing need for research. Such investigations could provide a monumental step toward finding the causes and the explanations for these widespread, devastating health problems. Since these topics have yet to be explored, mainly due to limited research funding, a shift in research focus may yield the solutions to many of these conditions that plague our society. An important hurdle to overcome There is a dichotomy between governmental dietary recommendations that encourage gluten grain consumption and the growing body of research that discredits grains as a healthy food for a significant portion of the population. Unfortunately this is an area where progress is necessary for gluten research to really thrive. Since grain production, processing, and consumption constitute huge portions of various state economies, it is in the best interests of governing bodies to keep grains on everyone’s plate for many years to come. It will require a truly overwhelming body of knowledge, based on solid research proving the hazards of grains to topple the current, flawed structure of governmental dietary recommendations. Conclusion Without this vast array of research, leading to widespread recognition of the hazards of gluten, we can expect little social change. Thus, future prospects for gluten sensitive individuals may be somewhat dim. Increasing population densities may lead to escalating competition for finite food resources. Cheap and available foods derived from gluten grains will become increasingly attractive. Future generations of our families (remember that gluten sensitivity and celiac disease have a large genetic component) will be at risk. The best answer, as we see it, is to fund research aimed at the questions posed here, as well as those that arise out of these investigations. We have offered several directions that we consider important. Whether or not you agree with our priorities, we hope you agree that we need further research into the human health hazards posed by gluten grain consumption. This article was co-written by Mike Pearson.
  2. I've become very sick after eating a homemade soup which contained organic carrots, organic broccoli, organic white potatoes, Harvestland organic chicken and no dry seasonings (bland). My usual symptoms kicked in immediately such as severe stomach pain, hot flashes, chills, diarrhea, nausea, brain fog, muscle, and joint pain, etc., I was diagnosed with celiac disease earlier this year and I've spent lots of money on food, but to no avail. The elimination diet causes a complexity of issues for me—money wasted, further damage my gut and delayed healing. Even healthy foods pose a problem for me and my "tolerable" list of foods are minimal. My symptoms are either a delayed response or immediate, depending on the food. I often ask, "How can a healthy food cause this much discomfort?" I have good days and bad days and symptoms waxes and wanes. I joked with someone that I'm to the point of resorting to eating cardboard. Anyone have advice for me, I'd truly appreciate it.
  3. Celiac.com 10/01/2018 - A team of researchers recently set out to establish the rates of epilepsy in patients with celiac disease or gluten sensitivity and vice versa and to characterize aspects of the epileptic syndromes presented by these patients. The research team included Thomas Julian, Marios Hadjivassiliou, and Panagiotis Zis. They are variously affiliated with the Sheffield Institute for Translational Neuroscience University of Sheffield in Sheffield, UK; and the Academic Department of Neurosciences Sheffield Teaching Hospitals NHS Trust Sheffield, UK. The team conducted a systematic computer-based literature search on the PubMed database, and gathered information on rates, demographics and epilepsy phenomenology. Patients with celiac disease are nearly twice as likely to have epilepsy as the general population. Celiac disease is twice as common in epilepsy patients as in the general population. Researchers still need to do more studies to assess rates of gluten sensitivity in epilepsy patients. The data indicate that the prevalence of celiac disease or gluten sensitivity is higher for certain epilepsy scenarios, including childhood partial epilepsy with occipital paroxysms, adult patients with fixation off sensitivity (FOS) and those with temporal lobe epilepsy (TLE) with hippocampal sclerosis. Epilepsy in the context of gluten-related disorders is a syndrome of celiac disease, epilepsy and cerebral calcification (CEC syndrome), which is frequently described in the literature. The good news is that gluten-free diet helps to control epilepsy in 53% of cases, either reducing seizure frequency, enabling reduced doses or even termination of anti-epileptic drugs. Patients with epilepsy of unknown cause should receive blood tests for markers of gluten sensitivity, and may benefit from a gluten-free diet. Read more at: Springer.com
  4. Celiac.com 09/26/2018 - Non-celiac gluten sensitivity (NCGS) is a clinical syndrome marked by both intestinal and extra-intestinal symptoms that respond to the elimination of gluten-containing food and the adoption of a gluten-free diet. A team of researchers recently set out to review the diagnostic challenges surrounding non-celiac gluten sensitivity, and to summarize recent advances in research and provide a brief overview of the history of the condition for the benefit of professionals working in gastroenterology. The research team included Giovanni Casella, Vincenzo Villanacci, Camillo Di Bella, Gabrio Bassotti, Justine Bold, and Kamran Rostami. They are variously affiliated with General Practioner National Health Italy; the Institute of Pathology Spedali Civili Brescia Italy; the Pathology Department, Carate Brianza Hospital, ASST-Vimercate (Monza Brianza), Italy; the Gastroenterology and Hepatology Section of the Department of Medicine at the University of Perugia School of Medicine in Perugia, Italy; the Department of Gastroenterology Milton Keynes University Hospital, Milton Keynes, UK; and with Allied Health and Social Sciences, University of Worcester, UK. The researchers searched academic databases such as PubMed and Google Scholar using key words like ”non-celiac gluten sensitivity,” “gluten related disorders,” and the studies outlined in reference page were selected and analyzed. Clinical opinion generally holds that NCGS is best diagnosed by ruling out celiac disease and wheat allergy. Currently there is no blood test that can pinpoint NCGS. The underlying causes of symptoms in NCGS patients is poorly understood. However, there have been a few recent insights. Professional estimates of NCGS rates currently vary between 0.6 and 6%. Gastrointestinal symptoms of NCGS overlap slightly with those of irritable bowel syndrome. Researchers are currently investigating the histologic characteristics of NCGS, which range from normal histology to slightly elevated rates of T lymphocytes in the superficial epithelium of villi. Positive response to gluten free diet for up to 6 weeks, followed by a recurrence of symptoms after a gluten challenge, is still the best confirmation of NCGS. The Salerno expert criteria may help to accurately diagnose NCGS, especially in research settings, but isn’t particularly useful for diagnosis in clinical practice. Source: Gastroenterol Hepatol Bed Bench 2018;11(3):197-202).
  5. Celiac.com 09/11/2018 - Gluten sensitivity is the most common sign of celiac disease. Clinical celiac diagnosis usually involves a positive blood test followed by biopsy confirmation of a typical enteropathy. The body’s immune response to celiac disease involves both adaptive and innate immunity, and is marked by anti-gliadin (AGA) and anti-transglutaminase 2 antibodies (tTGA), lymphocytic infiltration in the intestinal epithelial membrane, and expression of multiple cytokines. Researchers know that long pentraxin 3 (PTX3), an acute-phase inflammatory molecule, plays an important role in innate immunity. A pair of researchers recently set out to assess the relationship between Pentraxin 3 and biopsy status in celiac patients. Roberto Assandri and Alessandro Montanelli of the Department of Clinical Pathology, Clinical Chemistry Laboratory ASST Ospedale Maggiore di Crema, Italy, and the Clinical Chemistry Laboratory, Spedali Civili di Brescia, Italy, set out to explore a possible relationship between PTX3 and celiac disease. They used Marsh Histological grade following Marsh criteria classification to dividing 108 celiac disease patients into three groups: Group 1: Marsh 0, patients with a known history of celiac disease under gluten free diet, complete remission; Group 2: Marsh 1 and Marsh 2; Group 3: Marsh 3. As a control group, they used 30 healthy age-matched individuals with no known history of celiac disease or gastrointestinal symptoms. They used sandwich ELISA on an automated platform to measure PTX3 serum levels. They found that PTX3 serum levels were substantially higher in group 3 and group 2 compared with the healthy control group. They found no statistically significant differences between group 1 and the healthy control group. They noted a strong linear correlation between PTX3 serum levels and AGA levels in group 2, and group 3, but no such correlations between PTX3 serum levels and tTGA levels. Blood tests showed that PTX3 correlated with major gastrointestinal damage in celiac patients. PTX3 is a part of the innate immune system’s humoral branch. Data from this study show that PTX3 serum levels are high in active disease patients with pathological levels of AGA. They also show that patients with normal AGA IgA levels had PTX3 serum levels compared to healthy control subjects. The team proposes that PTX3 can modulate the innate response to gliadin in celiac disease, and may also regulate the adaptive immune response. Read more at: Gastroenterology and Hepatology
  6. Celiac.com 08/29/2018 - Up to one in twelve patients with gluten sensitivity develops neurological symptoms such as ataxia, dementia, seizures or peripheral neuropathy, though the reasons for this are still poorly understood. As a means of better understanding the immunological mechanisms behind this reality, a team of researchers recently reported the case of a 68‐year‐old male patient suffering from progressive ataxia and dementia associated with chronic diarrhea, and both elevated IgG and IgA antigliadin‐antibodies. The research team included Michel Mittelbronn, Jens Schittenhelm, Gellert Bakos, Rob A. De Vos, Manfred Wehrmann, Richard Meyermann, and Katrin Bürk. They are variously affiliated with the Institute of Brain Research at the University of Tübingen, and the Institute for Cell Biology, Department of Immunology at the University of Tübingen, Tübingen, Germany, the Neurological Institute/Edinger Institute, Goethe University Medical School, Frankfurt, the Department of Pathology, St. Georg Hospital, Leipzig, Germany, and with the Laboratory for Pathology, Enschede, the Netherlands. Autopsy indicated that frequent argyrophilic glial and neuronal inclusions within the basal nucleus of Meynert were the structural markers of the cognitive decline. The patient showed substantial neuronal loss in the cerebellar cortex and the inferior olives, along with infiltrating CD8+/perforin+/granzyme B+ cells, and reactive astrogliosis and microglial activation. In patients with gluten sensitivity and neurological disease, it is likely that CD8+ cytotoxic T and NK cells function as effector cells that trigger neuronal cell death, and thus might play some role in triggering cerebellar symptoms in gluten ataxia cases. The team concludes by noting that an absence of B‐ or plasma cells, along with multiple CD8+, granzyme B and perforin expressing cells in ataxia‐associated brain areas, indicates pronounced cytotoxic effects in neuro-pathogenesis of gluten sensitivity. This is one of the first reports to indicate that CD8+, perforin+, and granzyme B+ effector cells infiltrate the cerebellum and inferior olives in cases of gluten ataxia. Read more in: Neuropathology
  7. Hi Im new here. I've been suffering from GERD and IBS for past two years. I have done several courses of different medicines including PPIs to no avail. I have been researching on celiac desease and gluten sensitivity for past few weeks and out of curiosity I took the tTG and DGP antibodies test. My results are as follows, tTG-igA: 8.29 U/ml tTG-igG: 20.0 U/ml normal: values less than 12 U/ml equivocal: values between 12 -18 U/ml positive: values greater than than 18 U/ml ------------------------------------------------------------------------------------------ DGP-igA: 21.7 AU/ml DGP-igG: 14.75 AU/ml normal: values less than 15 AU/ml equivocal: values between 15-30 AU/ml positive: values greater than than 30 AU/ml ------------------------------------------------------------------------------------------ so basically my tTG-igG is positive and DGP-igA is equivocal. how would this result be interpreted?
  8. Hello all! I'm fairly new to this community. Although I've been reading many posts on here for a while, this is only my second posting! I am pre-diagnosis, although I am almost 100% certain that I am at least gluten sensitive. Due to time, I'll make another post later on detailing more of my symptoms and my experiences on this crazy journey. Currently on a gluten-free diet because it is not worth the suffering (cheated enough times that now just looking at a cookie makes my everything hurt). This question is more towards anybody who has a good understanding of genes, alleles, etc. I have finally coughed up the dough to get genetic testing done, and my alleles are HLA-DQ 8 and HLA-DQ 3. To my very elementary understanding, HLA-DQ 8 is one of the two HLA genes associated with the development of celiac disease. There is also some controversial and currently unreplicated data suggesting that HLA-DQ 3 is associated with gluten sensitivity. Regardless of that controversial piece, it is also my understanding that HLA-DQ 8 is a "form" of the HLA-3 allele. If HLA-DQ 8 is a form of HLA-DQ 3, what is the difference between HLA-DQ 3 and HLA-DQ 8, that I have both of them? In other words, what makes it HLA-DQ 3, instead of one of its sub-categories or forms? Not sure if the question makes sense, or if anybody knows! Thanks for any info!!
  9. Celiac.com 01/16/2018 - More and more, people are adopting a gluten-free diet due to perceived health and weight-loss benefits. A team of researchers recently set out to ask people with celiac disease and non-celiac gluten sensitivity about their views on the health effects of gluten, and safety of vaccines and gluten-free food products. The research team included Loren G. Rabinowitz, Haley M. Zylberberg, Alan Levinovitz, Melissa S. Stockwell, Peter H. R. Green, and Benjamin Lebwohl. They are variously affiliated with the Department of Medicine, Celiac Disease Center, Columbia University College of Physicians and Surgeons New York USA; the Department of Philosophy and Religion James Madison University Harrisonburg USA, the Department of Pediatrics Columbia University College of Physicians and Surgeons New York USA, the Department of Population and Family Health, Mailman School of Public Health, Columbia University New York USA, the Department of Epidemiology, Mailman School of Public Health, Columbia University New York USA, and the Celiac Disease Center at Columbia University New York USA. Their team conducted an online survey of celiac and non-celiac gluten sensitivity patients from a celiac disease center e-mail list. They used univariate and multivariate analysis to compare responses from the two groups. The overall response rate was 27%, with 217 non-celiac gluten sensitivity responses, and 1,291 celiac disease responses. Subjects with non-celiac gluten sensitivity were more likely than those with celiac disease to disagree with the statement that "vaccines are safe for people with celiac disease." In all, 41.3% of respondents with non-celiac gluten sensitivity said vaccines are safe for celiacs, while just 26.4% of celiac patients said so. Celiac patients were slightly more likely to decline vaccination when offered, at about 31%, compared with just over 24% of gluten-sensitive respondents. After adjusting for age and gender, non-celiac gluten sensitivity subjects were more likely than celiac disease subjects to avoid genetically modified (GMO) foods, eat only organic products, believe that the FDA is not a reliable source of information, and believe a gluten-free diet will improve energy and concentration. People with non-celiac gluten sensitivity were more likely than those with celiac disease to have doubts about vaccine safety and to believe in the value of non-GMO and organic foods. The team's findings suggest that there might not be enough easily accessible information on gluten and its inclusion in food and drugs, and that may reinforce incorrect beliefs that are contrary to good public health. Source: Springer.com.
  10. Celiac.com Sponsor: Review

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    Celiac.com 12/09/2017 - For those of you who haven't yet heard about GliadinX, it is a dietary supplement with the highest concentration of AN-PEP, Prolyl Endopeptidase (Aspergillus Niger), and, unlike other enzymes, these have been shown in studies to break down gluten in the stomach. I've been using them regularly for months, and I tend to take them whenever I eat out, or eat at a friend's house, so basically whenever I don't have control over my food's preparation. Since I began doing this I haven't had any incidents of upset stomach, which are my typical symptoms if I get any cross contamination. However, it is hard to prove a negative...after all, perhaps I haven't had any issues because all of the food I ate was 100% gluten-free...right? I will now describe a recent glutening incident that involved none other than my Mother, who visited us this past Thanksgiving. How this could happen in my home, after all I'm the owner of Celiac.com, is an embarrassing but true story which I will share here in the hope that it will help you avoid my errors, and perhaps give you a way to recover should something similar ever happen. My brother brought over three pies for Thanksgiving dessert, one was a gluten-free apple pie, and the other two were pumpkin pies: one was gluten-free, but the other was not. What could go wrong, right? My brother's reasoning for bringing a non gluten-free pie into my house was pretty basic: several of the guests were not on a gluten-free diet, so he wanted to offer them what they were used to. What you need to know about my Mother is that she's very gluten sensitive. A tiny amount of gluten leaves her wrecked for days. I think you probably know where I'm going here, but basically everyone was busy socializing, eating, or cleaning while dessert was being served, and a friend grabbed a piece of the gluten-containing pumpkin pie (she assumed that if it was in MY house it was gluten-free) and handed it to my Mother. After she swallowed two bites we realized the mistake, but it was too late. My Mother had the look of horror on her face as she realized that the rest of her trip to California was probably ruined. I immediately flew into action and gave her several capsules of GliadinX, which she took with lots of water. We carried on with the evening, and I checked in with her over the next couple of hours. Amazingly she didn't have any noticeable symptoms or issues, but she was still certain that they were coming, and that she wouldn't get any sleep and would feel horrible the next day. Remarkably, none of her worries came true. She slept fine, and woke up feeling great. We were both amazed because any past similar incidents always ended badly for her. Suffice it to say that my Mother now keeps a bottle of GliadinX with her all the time...just in case! --by Scott Adams Many people have asked Celiac.com how they can order this product, so we've included a "Buy Now" link below to order them directly from the manufacturer: Sources: Scientific publications on AN-PEP enzymes: Extra-Intestinal Manifestation of Celiac Disease in Children. Nutrients 2018, 10(6), 755; doi:10.3390/nu10060755 Efficient degradation of gluten by a prolyl endoprotease in a gastrointestinal model Enzymatic gluten detoxification: the proof of the pudding is in the eating! Highly efficient gluten degradation with a newly identified prolyl endoprotease: implications for celiac disease Degradation of gluten in wheat bran and bread drink by means of a proline-specific peptidase
  11. My entire life I've been dealing with what I now know is reactive hypoglycemia. I vividly remember eating a ton in the morning because I was scared of getting "woozy" and not having snacks prepared during elementary school. I also remember nearly passing out several times in P.E. class just two hours after lunch. Over the years I've managed it by having snacks and protein with each meal, but it's been getting more difficult as I've gotten older. My mom has the same thing and she gets woozy pretty often. She said her mother dealt with it, too. I thought this could be something related to diabetes, but after I posted on a diabetes forum, I had someone ask if I had been tested for gluten intolerance or thought about it. So, I'm bringing my symptoms here to see if any of this sounds like an intolerance. I am so tired of having digestive problems and I don't know what to do. Here are my other symptoms: *I have dealt with anorexia since I was 13 (currently 18), but I've been doing well for this past year, so new foods/normal amounts of food/eating out really shouldn't be bothering my stomach this much anymore. I've never experienced a regular period since I started starving myself soon after I first got it. When I was recovered the first time, before a relapse, I had a couple of irregular periods. Since my second recovery, I STILL have not regained my period. It has been over a year and my nutritionist seemed stumped. I have since stopped seeing her and am eating quite normally and freely as I used to and have gained weight recently just to see if that could help. Still nothing. In the mornings I'm usually very full, kind of nauseous, hot, and thirsty. I feel sick after eating a lot, or even "normal" amounts when I go out with friends. I have stomach cramps/sharp pains, extreme gas all day and everyday, suuuuuper bloated all the time, reflux, nausea, sometimes constipation, fatigue, my finger and toes often tingle, mouth ulcers, headaches...when I was younger I had "chicken skin" on the backs of my arms, which has since gone away. I also am diagnosed with anxiety. There's honestly more symptoms but I can't list them all. To sum it up, my stomach is upset all the time and I am always bloated no matter how long ago I ate/how nutritionally dense the food was. *forgot to mention, I'm also lactose intolerant, just like my mom. Any feedback is greatly appreciated.
  12. I need to make a post because I am starting to really trust my gut. (*IT is a SUPER LONG POST). I am very curious if anyone else in this world has experienced or is experiencing something similar to this. I don't know where to go where anyone will believe me. I have had 3 separate passing out/ still conscious incidents where I end up having muscle convulsions. The first one happened New Year's Day 2017, I wasn't eating gluten free at this time. I keep being told I am negative for celiac disease. I was drinking and eating a s$#& ton of gluten. I went to the bathroom and my heart was beating too fast. I felt like I was dizzy, lightheaded, and I was going to faint. I eventually had convulsions on the toilet. Then they stopped I was able to wash my hands then go to the couch. My head dropped losing muscle tone in my body and falling to the floor. On the floor I had were 20-30 different muscle contractions/convulsions. I kept crying and I couldn't talk when they were happening. Eventually, they stopped. April 2017 I had another one in the waiting area of a new GI doctors waiting area. I had just started a high blood pressure medication. I went to pee before my appointment. I sat down. I started sweating on my palms, getting really hot, my heart palpitating, and I got really dizzy again. I told the nurse I am going to faint. My head dropped, and lose muscle tone before convulsing. Of course, my blood pressure dropped too low but was also not gluten free at this point. I was 100% alert and hearing everyone freaking out. I want everyone to understand from August 2017 until end-January 2018 I was on a gluten-free diet. The reason I got off of it at the end of January was for a food sensitivity/allergy test in February. My GI doctor said celiac disease was negative (again) but it seemed that a gluten-free diet would be best. The third time was February 18, 2018. I was at a wedding. I was drinking (and when I was on a gluten-free diet, of course, I made sure what I was eating, and drinking was gluten-free). I am drinking, and I have no care if it's made with gluten. I was eating food too. I sat down for the dinner and the hot sweaty feeling happened, my heart is racing, I feel sick. I feel worried. I know I am going to faint. In the women's bathroom, on this fancy couch with my fiancé. She and I are sitting there and my head drops… I lose all muscle tone. And I have multiple muscle convulsions on the ground… until the ambulance came. I have been to two neurologists who refuse to believe me that the ONE thing these 3 incidents have in common is the fact I was not eating gluten-free. They said to stop drinking.. but I was in Mexico for 1-week January 6th to 13th. Drinking every day and eating gluten-free with no incident like this. They refuse to take a head scan or believe this can be caused by gluten. The people who see it believe they are seizures, but I am 100% alert. It cannot be a seizure. Doctors think it can be trauma, anxiety, convulsion disorder or some other mental illness. I need to know I am not crazy and I know I am not. I believe it is gluten related. My body is telling me it is. Also, I have passed out other times in my life without convulsions that I alreadys related to some kind of food but I didn't know which kind. Thank you for reading.
  13. Celiac.com 05/07/2018 - Pursuing a hypothesis that Gilles de la Tourette syndrome (GTS) and Non-Celiac Gluten Sensitivity (NCGS) may be related, a team of researchers recently set out to assess the efficacy of a gluten-free diet in 29 patients with Gilles de la Tourette Syndrome GTS in a prospective pilot study. The research team then evaluated patient progress after one year on a gluten-free diet. The research team included Luis Rodrigo, Nuria Álvarez, Enrique Fernández-Bustillo, Javier Salas-Puig, Marcos Huerta, and Carlos Hernández-Lahoz. To establish a baseline of conditions, the team used a series of questionnaires, including YGTSS, Y-BOCS/CY-BOCS and GTS-QOL, which they then compared before and after the gluten-free diet. The YGTSS questionnaires measured tics, while the Y-BOCS/CY-BOCS questionnaires measured the intensity and frequency of OCD. The study group included 23 children and 6 adults. In all, 74% of children and 50% of adults were male. When the study began, nearly 70% of children and 100% of adults showed OCD (NS). Both groups showed frequent symptoms of NCGS, with nearly half of the children and 83.6% of adults reporting headaches. After one year of gluten-free diet, both child and adult patients showed a substantial reduction in tics (YGTSS), a reduction in the intensity and frequency of OCD, along with improved QOL measurements. This study showed that both children and adults with Tourette syndrome and non-celiac gluten sensitivity who followed a gluten-free diet for one year showed a significant reduction in tics and OCD. A gluten-free diet seems to reduce tics and OCD both in both children and adults with Tourette syndrome and gluten sensitivity. Clearly larger studies are needed to confirm these finding, but this is exciting news for those with Tourette syndrome and the doctors who treat them. Meantime, the number of conditions that seem to improve with gluten-free diet treatment continues to grow. Stay tuned for more developments. Source: Preprints 2018, 2018040332. doi: 10.20944/preprints201804.0332.v1
  14. Celiac.com 04/14/2018 - There is a revolutionary new book about gluten sensitivity and celiac disease, written by Dr. Gordon Heinrichs, D.C. (whose article appears in this issue). His careers as a medical laboratory technologist, then a chiropractor, have uniquely located him to see gluten's impact on health in an entirely new way. His book critiques relevant scientific explorations and discoveries and the ensuing clinical practices. Titled "Celiac Disease & Gluten Sensitivity: A troubled past, but a promising future", this exciting book is a breath of fresh air in the field of gluten sensitivity and celiac disease. Dr. Heinrichs' thoughtful analysis of relevant data combined with the application of practical common sense explodes some of the common medical myths that claim to distinguish gluten sensitivity from celiac disease. He also explores conventional wisdom around dietary experimentation, and offers a rational approach to diagnosing gluten sensitivity. The evidence Heinrichs provides raises questions about the view that we should continue to eat gluten until we can visit a gastroenterologist and get a biopsy taken. He also challenges the belief that HLA analysis is beneficial for those who are aware that gluten causes some or all of their health problems. After a preview of the final draft, I can confidently predict that anyone who is interested in thoughtful, objective, and health promoting insights into gluten's impact on human health will be intrigued and motivated by the offerings of this inexpensive, powerful new ebook. I recommend it without reservation. It is very well researched and written and is now available on Amazon. I hope it will become the new best seller among books that explore the gluten syndrome.
  15. Celiac.com 03/12/2018 - People with celiac disease often experience nerve pain, with can lead to actual nerve damage. Sometimes, neuropathy can be one of the few physical symptoms of celiac disease. Previous studies have linked gluten sensitivity with nerve damage in the hands and feet, which can cause weakness, numbness and pain; a condition called gluten neuropathy. For some time, doctors have suspected that gluten may play a role in triggering neuropathy in celiac patients, and that a gluten-free diet may help to alleviate the problem. The study by Dr. Zis and his team included 60 people, averaging 70 years of age, who had been diagnosed with gluten neuropathy. More than half of these patients also reported neuropathy-related pain. The data showed that diet was definitely a factor in the presence and severity of neuropathy. Nearly sixty percent of the patients without pain were following a gluten-free diet, but just 21 percent of patients with pain were avoiding gluten. After adjusting for factors including age, sex and mental health, the team concluded that neuropathy patients who followed a gluten-free diet experienced 89 percent lower risk of pain. The team’s research supports the idea that gluten-free diet may help reduce nerve pain in some people with gluten sensitivity. The findings are important, says lead author Dr. Panagiotis Zis, of the University of Sheffield in the United Kingdom, because they indicate that “a relatively simple change in diet could help alleviate painful symptoms tied to gluten neuropathy.” Dr. Zis and his colleagues plan to present their findings at the annual meeting of the American Academy of Neurology (AAN), this April in Los Angeles. As research into gluten intolerance has progressed, more and more researchers have come to regard it as “a spectrum of disease as opposed to one easily defined disease," said neurologist Sami Saba, who was not involved in the new study. While just 1 percent of Americans have celiac disease, many more could conceivably have gluten sensitivity, which is “marked by immune-system antibodies to gluten in blood tests, or symptoms of gluten sensitivity even in the absence of antibodies,” Saba said. Dr. Zis emphasizes that the study showed a connection, but did not prove causation. It did not prove that gluten causes neuropathy in these patients. Further study is needed to confirm the team’s results, and to determine for certain that the pain relief they saw in patients was the result of a gluten-free diet. In the meantime, doctors should consider a gluten-free diet in patients with neuropathy, as it may help to alleviate their symptoms, and carries minimal risk. Source: usnews.com
  16. Celiac.com 02/16/2018 - Gluten sensitivity is a real thing. None other than Alessio Fasano, the renowned celiac researcher at the University of Maryland, has said as much. The problem is, there is not really an accurate way to diagnose it. But now that gluten-free foods are Big Business, generating almost $2.5 billion in US sales in 2010, Fasano and fourteen other experts convened in London to characterize exactly who needs to avoid gluten and why. Results are reported in BMC Medicine and covered by the Wall Street Journal. Wheat allergies can be diagnosed with a skin prick showing the presence of IgE antibodies. These are not particularly accurate, however, because the reagents used do not necessarily contain all of the allergens present in wheat and because they give a positive result for people who are allergic to grass pollens. Thus, an oral food challenge is often required for a definitive diagnosis. Unlike the wheat allergy, celiac disease, dermatitis herpetiformis, and gluten ataxia are autoimmune diseases. They are mediated by the IgA class of antibodies that are induced by the presence of gluten to attack the body's own transglutaminase enzymes at different locations; in celiac disease they attack tissue transglutaminase in the gut, in dermatitis herpetiformis they attack epidermal transglutaminase in the skin, and in gluten ataxia they attack tTG6, a transglutaminase expressed in the brain. In contrast to an allergy these ailments cannot be outgrown, and those who have them must strictly avoid gluten, and the related proteins in barley and rye, for their entire lives. People with gluten sensitivity are defined as those have neither an allergic nor an autoimmune response to gluten, but who feel crappy when they eat it and better when they avoid it. There is suggestive evidence that gluten sensitivity might be mediated by the innate immune system, a more primal arm of the immune system than the adaptive immune system that mediates celiac disease. Eating gluten can often make these people feel sicker than it does people with celiac disease, who can be asymptomatic; yet gluten does not destroy their intestines, whereas even the tiniest drop of gluten can cause damage to the intestines of celiac patients. Fasano notes that all adverse reactions to gluten are on the rise. Perhaps this is because the wheat variety that is now most common has a much higher gluten content than those varieties that have been used historically, and because gluten is now a hidden ingredient in many processed foods—so we are consuming more of it than we ever have before. However, he also knows a trend when he sees one, noting that "a placebo effect of the dietary treatment is often difficult to determine" and "the market is filled by individuals affected by maladies that have been claimed to be affected by gluten exposure, including autism spectrum disorder, attention deficit hyperactivity disorder, multiple sclerosis and irritable bowel syndrome, but for which there is no evidence of the effectiveness of this diet." Sources: Sapone et al. Spectrum of gluten-related disorders: consensus on new nomenclature and classification. BMC Medicine 2012, 10: 13. http://online.wsj.com/article/SB10001424052970204136404577206891526292590.html?KEYWORDS=gluten+free http://blogs.wsj.com/health/2012/02/07/health-journal-deciphering-the-ailments-tied-to-gluten/?KEYWORDS=gluten+free
  17. I’m 30 and have not been tested for any gluten sensitivities, intolerance, or celiac disease. Best as I can recall, two years ago during my first and only pregnancy to date, I began to notice a rash that would appear on my elbows, inner thighs, and knee caps. The rash comes and goes, varying in severity. Until recently, I’ve dismissed the rash, assuming it was/is hormonal or due to weather, or dry skin. I hadn’t even thought to mention it to my doctor. This time around, the rash has been present, but not very prominent until this past week. It has flared up again and is itching and burning more often than not. In addition, I’ve been experiencing abdominal muscle twitching that feels extremely similar to fetal movements. I took two pregnancy tests that came back negative. I honestly would have sworn, despite having no other symptoms and taking birth control, that I was feeling fetal movement. I’ve recently begun researching possible causes for both the rash and muscle spasms, and of course there are so many possibilities, but it seems like the locations of the rash coincide with dermatitis herpetiformis. The above symptoms are the only ones I’m currently experiencing as far as I can tell. I should probably also mention that my diet has been absolute trash until recently, as I’ve committed to trying to get back in shape and maintain a healthier life style. I don’t even know where to begin as far as making appointments, and with which specialists and so on. If anyone has similar experiences and/or any helpful advice or recommendations, I would greatly appreciate the help. Thanks. *EDITED TO ADD- I forgot to mention two other possible symptoms. Depression and anxiety. I struggle with both. I also realize that it’s possible that I’m overreacting and jumping to conclusions. Apologies in advance. I’m beyond frustrated with this stupid rash and the muscle spasms.
  18. Celiac.com 12/29/2017 - Do you remember the moment when you were diagnosed with celiac disease or gluten sensitivity? Most people I talk to have it etched in their memory. After all, the information is life transforming. Yet, I doubt if most of us understood the enormity of the information until time passed and we had the opportunity to actually fully understand what it meant besides the gluten free diet (GFD). Along with having to learn that gluten is everywhere, we also learn that having to eat differently is, to put it mildly, upsetting. In fact, the psychological impact of living with celiac disease or gluten sensitivity usually involves depression and anxiety. There are other emotional responses as well; these include grief and, for some, trauma (depending upon how long it took for a diagnosis and how sick the person became). Celiac disease or gluten sensitivity is such a difficult illness to live with because of the social and cultural fallout we are forced to deal with as a result of having to be on the gluten-free diet. We quickly learn how difficult it is to negotiate the world having to live on the gluten-free diet. Let's start with how much food is involved in normal social situations: a family gathering, a party, going out to eat for any meal, a wedding, and for kids of all ages, school, camp, etc. Until it happens to you, it is very difficult to comprehend the enormity of the change and its limiting impact. Change is something people do not like, even if that change is good. And we most certainly do not like to change the way we eat. Just talk to anyone who has ever been on a diet. Unfortunately for those of us with celiac disease or gluten sensitivity, the diet is not optional. And, it's hard; so hard in fact that some people cheat. And ultimately, they pay. Culturally, food is hugely important. Food is almost always involved in every occasion that involves spending time with people, dating, any rites of passage including bridal showers, baby showers, weddings, and birthday parties. And there are the holiday gatherings. Every single time you are invited to attend one of these events, you have to stop and think about whether it's worth it to attend. If you go you will either have to eat before you go, take your own food or ask the hostess to make special arrangements. You not only feel like a burden upon those in your social and family circles, but you find yourself stressed out by the mere prospect. And the social consequences are enormous. The very people life you have always relied upon for support, begin to drift. You find yourself shocked and saddened by the reactions and behavior of family and friends who you never suspected of being unable to handle change in you. It's hard not to take personally, but their reaction is not about you. They most likely react this way because your life is now too restrictive for them. Just like you, they want to be able to go wherever they want to eat, serve whatever they want to serve and not have to think about it twice. But unlike you, they still can. And this inevitably leads to conflict. Then your feelings get hurt and they are frustrated and you simply stop getting together as often because, in the end, it's just easier. I believe that is why people with this disease enjoy socializing with others who are also living on the gluten-free diet. We are trying to avoid the social isolation, loneliness, and shame. We want to forget our fear of the unknown, feeling like we no longer fit in, as if we are lost, or in denial and maybe needing more information. In a nutshell, we feel crazy. Because we cannot do something most people can do: eat normally. These feelings are only a portion of what I have learned about people who are forced to live on the gluten-free diet experience. Parents of children impacted with celiac disease or gluten sensitivity share these feelings as well. In the end, you need to give yourself time to fully understand the gluten-free diet, and in order to keep yourself safe, become vigilant to all of the hidden places gluten can hide. We do know that those who stay on the gluten-free diet and avoid gluten as much as possible feel better emotionally much more quickly than those who do not. I cannot underestimate the need to consult a good dietician. You need to find others living on the gluten-free diet; they can often be found through local support groups. Some of us might find it helpful to talk with a therapist who is familiar with celiac disease, gluten sensitivity or chronic illness in general. Lastly, you also need to remind yourself that you cannot change how your body reacts to gluten. And you cannot change other people. What you can change is your perception and attempt to understand that while we may require a different diet to stay safe and healthy, those who do not have our diagnoses do not. Our experience of life, then, is changed. We have had change forced upon us. Our friends and family have not. The only thing different to them is that we are telling them we can't eat the way we used to. I think the sooner we accept these facts, the sooner those around us will as well. You are not crazy. The way you have felt since the day all of this began for you is perfectly normal. Yes, some people have serious depression in addition to celiac disease and gluten sensitivity. This requires treatment in addition to the gluten free diet. For some, the depression and anxiety are alleviated over time because of the gluten-free diet and subsequent healing. In the end, this is a difficult but doable road and you are in good company.
  19. Celiac.com 11/25/2017 - We have long known that gluten intolerance, both celiac disease and gluten sensitivity, are highly associated with neurological symptoms. Migraines, ataxia (unstable gait), seizures, schizophrenia – the list is long. But a recent research study just published last month sheds some new light on exactly what the mechanism may be. Understanding why these debilitating symptoms occur as a result of a gluten intolerance will, hopefully, go a long way toward increased awareness among the lay public and clinicians alike. It is certainly true that too many millions of Americans suffer the effects of a gluten intolerance unknowingly. They only know that they feel unhealthy but have no idea that gluten is the culprit. The digestive tract is sometimes called the second brain. Some say that is because it is second in importance to the brain. After all, if the food that is consumed doesn't turn into fuel that can effectively feed the 10 trillion cells in the body, those cells will be unable to perform their job and keep the body healthy. In fact, poor digestion is absolutely linked to poor health and increased onset of degenerative disease. This article in Current Pain and Headache Reports looks at another possibility for naming the digestive tract the second brain, and it simply stems from anatomy. The digestive tract actually has a ‘mind of its own'; more correctly, it has a nervous system of its own, called the enteric nervous system. ‘Enteric' simply means having to do with the intestine. This nervous system, according to research, is very similar to the brain housed in the head in that it is bathed in similar chemicals (called neurotransmitters – which, interestingly enough, are mostly produced in the gut!). It sends and receives impulses and records experiences and is influenced by emotions. Some proof of the latter: Have you ever been nervous and had diarrhea? This particular study stated that experiencing ‘adverse events' created a state of hypervigilance (a state of being overly responsive - not a good thing) in the nervous system which was associated with migraines and IBS. Such ‘hypervigilance' was previously only associated with the central nervous system – the one attached to the brain in the head. This group of researchers suggests that the initiation of hypervigilance may very likely lie in the enteric nervous system also. What this means is that if the small intestine is genetically sensitive to gluten and gluten is ingested, it could set off a nervous system response that could create disabling diseases, such as migraines and IBS, but likely others as well. The take-away message is that it is truly critical to diagnose gluten intolerance as soon as possible. Once that hurdle is surmounted it then needs to be followed with a program of nutrition, lifestyle and diet that will ensure healing of the small intestine and a ‘calming' of the hypervigilant nervous system. You may sometimes hear this referred to as healing a leaky gut. Here at HealthNOW we often see this clinically in patients who seem intolerant to many different foods and can't seem to enjoy stable improvement of their symptoms, even after they eliminate gluten from their diet. The reason for this insufficient improvement is that a comprehensive follow-up program is missing – a program that addresses what we call the Secondary Effects of Gluten. This entails evaluating for any other food sensitivities, cross reactive foods, a tendency towards autoimmune disease, the presence of any infectious organisms, healing the leaky gut, balancing the probiotic population, and more. While increasing awareness of the presence of gluten intolerance is absolutely critical, neglecting the secondary effects, as mentioned above, can result in long-term ill health that is truly preventable. Have you experienced such symptoms? Have you removed gluten but are only partially healthier? I'd love to hear from you. To your good health.
  20. Brand new here. I'm searching for all the help I can get, and, well... I figure you all are "experts" I have suspected for Years that my daughter is Gluten sensitive or allergic (and my husband as well, and my MIL because my daughter is SO much like her). The doctor I approached on the subject said to put her on a gluten free diet and if she does better, then I'll know. I want to have her tested before we go gluten-free, but I don't know how to ask for that (we've moved to a whole new state, so new drs) Her symptoms that make me suspicious are: Eczema that appeared at 2m old (but went away) and Dermatitis herperiformis that is very mild, toddler tummy that never went away, and off and on complaints of pain in her legs and feet; pain so bad she doesn't want to walk. She has been complaining for a couple days, so that is what has led me here. Granted, she is my fastest growing child... she's 7 and is now taller than her petite 9yr old sister (my mother in law was a tall woman, and so is my father so genes are at play), but the extra fat she carries (born with) I suspect has to do with gluten. My husband I suspect as well because he has (for as long as I've known him) body wide acne, became lactose intolerant (gas, cramps, diarrhea), and occasionally other foods will set off the irritated bowel type symptoms as well. He also gets psoriasis rash on his face and scalp. I wonder at times if gluten is the culprit for his mental health and sleep issues as well. Need to get him tested as well. We are on an extremely tight budget, and all the work needed to provide gluten free meals seems like a very daunting task. I'm quite overwhelmed by it, and it Really doesn't help that my family, Especially my husband, is stuck on the processed foods that taste "better". So with all that... Any advice would be helpful.... am I on the right track with these symptoms? Questions welcome. p.s. My mother was diagnosed by small intestinal biopsy, to have "the start of celiac damage" so she has been eating gluten-free since July. She pays for it dearly every time she consumes G now, with major gas, and cramps, etc. Unfortunately she is allergic to soy and has found that Quinoa makes her lips burn and swell so that's out the window. I too have begun reacting to soy with blisters and throat tightness, so changes are in store for me too.
  21. Celiac.com 08/28/2008 - Gluten intolerance can affect all the mucous membranes of the body in sensitive individuals, including the bladder lining. I was diagnosed in 1996 with an incurable, progressive, painful disease called interstitial cystitis. The symptoms mimic those of a bad bladder infection, although most lab tests are negative for bacteria, and antibiotics generally do not help. I knew as a nurse how the bladder functions, and that it needs to have an intact lining to tolerate holding all the toxic wastes of the body prior to elimination. It made sense to me to try a dietary approach, and I had good luck immediately by excluding from my diet known bladder irritants like tomatoes, caffeine, chocolate, citrus, and alcohol, even though most doctors at the time gave diet little credit for a reduction in symptoms. Nevertheless, the disease did progress over time, and I eventually needed to take pain medications, anti-spasmodics, and other medications to enable me to function. Every urine test showed that I had significant amounts of blood in my urine. No one ever tested me for food allergies, gluten intolerance, or considered any other possible cause. No one suggested that my symptoms were part of a systemic dysfunction in my body. I had a painful disease, and they would give me as much pain medicine as I wanted, but there was no cure. I was no longer getting enough sleep to enable me to function well as a nurse. I made the choice to stop working for a few years to concentrate on rebuilding my health. I was in constant pain. It was about this time that I began turning to alternative practitioners for help, and started experimenting with my diet, as well as having food allergy and sensitivity testing done. I had some success eliminating the swelling in my pelvic area using castor oil packs, enough so that when I had increased swelling from eating a particular food, I could tell the difference. Careful observation showed me what did and did not negatively affect my bladder. Eliminating gluten resolved a long-standing rash on my legs, called dermatitis herpetiformis, and after about two years and a lot of alternative bodywork, my bladder began to significantly recover. It was the first area to show symptoms, and the last to recover. Now, twelve years after my interstitial cystitis diagnosis, my urologist readily agrees that gluten negatively affects the bladder in some portion of her patients, and that eliminating gluten leads to a reduction in symptoms. All of my urine tests are perfectly normal and I sleep at night. Still, there are almost no published journal articles linking gluten intolerance and the bladder. I am trying to get the word out there, specifically, the idea that we do not have to live with constant pain, and that what we eat can affect our health. My future goals include beginning an informal clinical trial in the form of a support group for patients willing to try a gluten-free diet as a treatment for chronic bladder symptoms. If anyone is interested in the link between bladder symptoms and gluten sensitivity, I have pages of anecdotes gathered from many people who have experienced healing on a gluten-free diet. The Connection Between Bladder Symptoms And Gluten Sensitivity - A Collection Of Personal Experiences* *Names have been changed to initials to protect individualsprivacy.The author has the originalweb-posts or other identifying information. A summary of web posts from icpuzzle@yahoogroups.com and intersitialcystitischronicpain@yahoogroups.com and personal communications revealing strong evidence of a connection between bladder symptoms and gluten sensitivity. This article is an adjunct/follow-up to the above article on gluten sensitivity and bladder disease. …”The main help came from W.’ssuggestion to try to eliminate wheat-barley-rye (gluten).The Elmiron was getting close it it’s maxwithout constantly abusing the situation with gluten…about three months ago Istarted eliminating gluten-carrying grains, “wallah” absolutely the mostsignificant change started happening about 3 or 4 days from the last day ofgluten. How much better am I now sincethen – about 500% better (close to where I was when I first noticed the IC,even though I didn’t know what was happening – close to TWENTY YEARS AGO). I am still of the opinion that some kind ofcritters have and maybe still play a part of this. I have taken every kind of antibiotic, with alittle success now and then, but not enough to kill it.” “It took about 3 months to seemild improvement, about a year to see moderate improvement, and about 2 yearsto feel much better. I am not 100percent symptom free, but most of the time I am a very manageable level ofsymptoms, and when I flare (from diet or sex) it is very short lived.I am down to one Elmiron a day (from theoriginal dose of 3) and I also do a gluten and sugar free version of the ICdiet, which I also think has helped me a lot.” “I have had IC for 30 yearspretty severely. It was only this pastyears that I got tested …and found out I had a severe wheat-gluten allergy tothe point that I cannot ingest one bite of anything with wheat or gluten…theysaid my whole digestive tract was inflamed…Over the years I knew I was wheat,dairy, and sugar intolerant but these (latest) tests are more specific and letyou know the levels. I feel muchstronger and have many days when I am symptom free. I finally feel different.” “I have started cutting wheat andgluten out of my diet, its been about 2 weeks now. I, like M., have IBS. I am feeling better every day.I am following a diet very similar toyours.Thank you for posting it again!” “I have had IC for over adecade. I have been on a gluten freediet for over 6 years and that has been the only thing that has given me anyrelief from the IC. I no longer take anymeds at all – haven’t even been to a doctor for the IC in several years.Glad to hear someone else is seeing thebenefits of the gluten-free diet for IC and getting the word out. I would definitely suggest anyone with ICgive it a try. It definitely gave me mylife back." “Where have you been for the lasttwenty plus years?You may have saved mylife.I have described these symptomsfor years to doctors and never got an answer that sounded even close to whatwas happening. Just “try these antibiotics”once in a while at the beginning (there was minimal change), but more and morethe antibiotics got more and more expensive with less and less effect if any atall, it even included the kill-all antibiotic – kills everything except me…Went to nerve doctor ($2,500 plus, pelvic x-rays (2 or 3 types).One of the urologists… never said anythingbut “prostatitis” over and over again. My head now also has a nearperfectly clear thinking ability, before it was always a bit cloudy even thoughI may not have been totally aware of it.The feel of carrying extra weight is now almost gone. The gluten issue may not be theonly issue I have – prostatitis is likely to be part of the pain problem, butthere is no question that the gluten issue has been a very, very large part andis now subsiding.” “I was tested for glutenintolerance but it came out negative but while I awaited results I went gluten free and I felt so goodI never went back. I have had a lot ofimprovement going gluten and sugar free as well.I can find rice pasta, lasagna etc.easily. It’s amazing how you don’t haveto try hard to substitute (for) it.” “I have gone from having to gowith urgency every 5 to 10 minutes and being in constant pain (especially atnight) to having almost no symptoms. I am not “cured”. I am still working on healing. I occasionally have a mild flare. Gradually I am able to add foods back into mydiet – a very different diet than before. Whole foods, more veggies, only whole grains (no wheat), no sugar, and anoverall more alkaline diet….There is help. There is hope.” “I am just into the first severalchapters of the book (Solving the IC Puzzle, by Amrit Willis, R.N.), but wantedto stop and ask if there were any people who were celiac or gluten intolerant thatalso suffer from IC. In my celiacsgroup, there are quite a few that have celiacs that (also) have IC.Autoimmune – allergy – poor lifestyle choices– toxic body – all related. So, I amwondering if there are others in this IC group that are glutenintolerant/celiacs or who have suffered from, have, or have healed fromautoimmune diseases…” “I have celiac disease also. I was diagnosed via a blood test about 4months before the IC thing came to a head. I disregarded the doctor’s warning to stay away from gluten/wheat.I went to a gastroenterologist because I feltlike I was having a stomach flu every 2 weeks. So I saw this guy and he gave me the blood test results (which Iignored) until finally, I felt so bad I decided to whit the gluten/wheat.I had a friend who has celiac really severelyand she told me that I might as well cancel my hydrodistention to test for ICbecause eliminating wheat/gluten might clear everything up for me. Unfortunately, I had thehydrodistention which made me much worse, IC-wise….Sorry for the long-windedanswer.I finally stopped taking theElmiron…So far so good.I really don’texpect to have a problem. It was justhard letting go. I don’t know which came first(the celiac or the IC).Looking back,every time I drank beer I always felt bloated right away. Classic example, on our way to skiing, wewould stop for two beers. Relievingmyself before getting back in the car, I would be dying for the bathroom beforewe reached our destination, 45 minutes later. I though this was normal.Isuppose it was the celiac and IC kicking in. Too bad it would take 10 years and 3 pregnancies later to diagnose it…” “I have been diagnosed withgluten sensitivity and am gluten-free. Since I was already eating very little in the way of grains at mynutritionist’s urging, I don’t find the diet that difficult to follow.I try to be very careful.” “I agree with these 2 types ofpastas. I also find that when I eatwheat (which is an allergy I have) that my bladder gets irritated…” “…So, W. your IC is totally goneright now – especially after cutting out gluten? I have known for years and years that I wasgluten sensitive as whenever I wouldn’t eat gluten or wheat, if I just atevegetables and protein my stomach would be soooo quiet.Hindsight is 20/20 – just wish I would havegiven up gluten years ago and maybe this wouldn’t have happened. I am checking into pelvic floortherapy and will have that done along with many other things – I am soterrified of this getting worse, absolutely scared to death. Thanks for your words ofencouragement and comfort.” (Personal Communication)“Suddenly some of the mysteriesof what's been called my "wheat intolerance"or "allergy" were resolved. In particular, I no longer thinkI'm crazy for suspecting a link between my 2.5-year-long urinary tract infection and the onset of my moreobviously wheat-related symptoms. Thanks so much for getting theword out, and sharing your experience!” (Personal Communication) “I about fell off my chair when Iread about your bladder stuff. I've seen 3 specialists (including adigestive doc and a urologist!!), a regular PCP, and a naturopath, andnone of them were willing to consider a link between wheat issues and my poorbladder's troubles. It was like the world lifted offmy shoulders - I'm not crazy! And my body is not the wreck I thought itwas at the ripe old age of 31!Seems funny to be exultant aboutprobably having celiac disease, but that's whatI've been since.”
  22. Celiac.com 10/12/2015 - There's been a good deal of attention devoted to gluten sensitivity in people without celiac disease, but researchers still don't know much about potential risks associated with the condition. A research team recently looked at the prevalence of autoimmune diseases among patients with non-celiac wheat sensitivity (NCWS), and investigated whether they carry antinuclear antibodies (ANA). The research team included A. Carroccio, A. D'Alcamo, F. Cavataio, M. Soresi, A. Seidita, C. Sciumè, G. Geraci, G. Iacono, and P. Mansueto. They are variously affiliated with the DiBiMIS University of Palermo, Palermo, Italy; the department of Internal Medicine at Giovanni Paolo II Hospital in Sciacca, Italy; the DiBiMIS University of Palermo, in Palermo, Italy; the department of Pediatric Gastroenterology in ARNAS Di Cristina Hospital, Palermo, Italy; and the Surgery Department at the University of Palermo in Palermo, Italy. The research team conducted a retrospective study of 131 patients diagnosed with NCWS, 121 of whom were female. The average patient age was 29.1 years, and the study was conducted at 2 hospitals in Italy from January 2001 through June 2011. The team also collected data from 151 patients with celiac disease or irritable bowel syndrome, who served as control subjects. They reviewed patient medical records to identify those with autoimmune diseases. They then conducted a prospective study of 42 patients, 38 of whom were female, with an average age of 34 years, who had been diagnosed with NCWS from July 2011 through March 2014 at 3 hospitals in Italy. For the prospective study, one hundred age- and sex-matched subjects with celiac disease or IBS served as control subjects. The team collected serum samples from all subjects and measured ANA levels using immunofluorescence analysis. Participants completed a questionnaire and the team reviewed patient medical records to identify those with autoimmune diseases. In the retrospective analysis, about 30% of patients with either NCWS or celiac disease developed autoimmune diseases; mainly Hashimoto's thyroiditis, of which there were 29 cases. Compare this with about 4% of IBS who developed an autoimmune disease (P < .001). In the prospective study, 24% of patients with NCWS, 20% of patients with celiac disease, and 2% of patients with IBS developed autoimmune diseases (P < .001). In the retrospective study, serum samples tested positive for ANA in 46% of subjects with NCWS (median titer, 1:80), 24% of subjects with celiac disease (P < .001), and just 2% of subjects IBS (P < .001). In the prospective study, serum samples were positive for ANA in 28% of subjects with NCWS, 7.5% of subjects with celiac disease (P = .02), and 6% of subjects with IBS (P = .005 vs patients with NCWS). From these results, they conclude that positive ANA results are associated with the presence of the HLA DQ2/DQ8 haplotypes (P < .001). Source: Gastroenterology. 2015 Sep;149(3):596-603.e1. doi: 10.1053/j.gastro.2015.05.040.
  23. Celiac.com 05/15/2017 - For all the talk of studies touting evidence for non-celiac gluten sensitivity, the actual data don't stack up very well, according to an recent assessment by two researchers, whose results appear in Clinical Gastroenterology and Hepatology. In an effort to determine the accuracy of using a double-blind, placebo-controlled study to confirm diagnosis of non-celiac gluten sensitivity in patients who respond to a gluten-free diet, researchers Javier Molina-Infante, and Antonio Carroccio recently set out to assess data on a series of such studies. Both researchers are affiliated with the Department of Gastroenterology, Hospital Universitario San Pedro de Alcantara in Caceres, Spain. For their study, the pair analyzed data from 10 separate double-blind, placebo-controlled, gluten-challenge trials on a total of 1312 adults. The available studies varied significantly in many ways. The duration of the gluten challenge, for example, varied from 1 day to 6 weeks. The daily doses for those gluten challenges varied from 2 grams to 52 grams, with 3 studies administering 8 grams or less each day. The composition of the gluten-free placebo also varied considerably between tests; including variation by gluten-free product type, and levels of xylose, whey protein, rice, or corn starch containing fermentable carbohydrates. Most of the studies did find gluten challenge to significantly increase symptom scores compared with placebo. However, out of 231 NCGS patients, only 38 patients (16%) showed gluten-specific symptoms. Moreover, nearly half (40%) of these patients showed similar or increased symptoms in response to placebo; something researchers term a 'nocebo' effect. That leaves just 6 or 7 patients out of 231 showing gluten-specific symptoms. The researchers also point to heterogeneity and to potential methodology flaws in gluten challenge studies. They also present powerful questions about gluten as the trigger for symptoms in most patients with presumptive NCGS. Lastly, they highlight the importance of the nocebo effect in these types of studies. These results certainly invite more careful, rigorous studies on the matter, and challenge researchers to provide solid data from well-crafted double-blind placebo controlled studies. Basically, what little evidence we thought we had to support the existence of non-celiac gluten sensitivity has been shown to be thin at best. Until solid evidence arrives, the status of non-celiac gluten sensitivity will remain open to question and doubt by both researchers and potential sufferers. Source: Clin Gastroenterol Hepatol. 2017;15(3):339-348.
  24. Looking to see what else other may have seen or experienced. My 5 yo daughter had issues with gluten since birth. I had been gluten free for 4 years before being pregnant with her. ( I was not diagnosed celiac, had gene test, positive, antibody test negative. later figured out I was IgA deficient, but already gluten-free diet by then) Anyway, I got glutened when exclusively breastfeeding her, she had diarrhea for days until it cleared my system. Diarrhea reoccurred when she had milk pumped from that time period. Fast forward to solid food introduction: she had diarrhea when she tried wheat foods around 12 mo old. I make everything at home gluten free, so she tried gluten at grandmas. Decided to skip wheat, since washing diarrhea diapers is no fun. She was probably glutened some times during toddlerhood, as toddlers put everything into their mouths. At three, we decided to try a gluten challenge, which in hindsight, really messed up potty training. She had alternating constipation for days, then followed by a couple days of diarrhea. After 10 weeks, her antibody tests were negative, her IgA ok, her gene test positive. I skipped endoscopy for $$ reasons, but returned to gluten-free and her BMs became normal consistency and regularity again. Since then, she had occasionally been glutened, usually an oops at daycare or gluteny playdoh. Last time we knew she was glutened was regular playdoh at preschool in Sept 2016, after which we bought her gluten-free doh and gluten-free toys for her to have in class. AND potty training issues greatly improved over this past year. BUT just three weeks ago, she got into a regular ice cream sandwich...and there were no diarrhea poops. So last week, I fed her one whole piece of gluteny bread....and no diarrhea. So I'm torn about what to do! Has she outgrown something? Is she 'silent' in her symptoms now? I know the Dr would say go back to gluten and retest if symptoms return. But mommy bear worries if silent symptoms would hurt her during years of growth? Or maybe I'm overthinking and she'll be just fine for the rest of her life?
  25. I wanted to collect some of the info on NCGI in one place so that visitors who test negative but may still have an issue with gluten can be directed there. I'll add to this post as I find new links, but feel free to add or contribute anything you think may be of use! Matt --- Useful links: An overview from Alessio Fasano, one of the world's leading researchers on celiac and gluten sensitivity: https://www.youtube.com/watch?v=VvfTV57iPUY Umberto Volta, another leading researcher in the field gives some of the latest findings about NCGI: Presentation slides from Dr Volta's visit to Coeliac UK - NCGS about halfway through A scholarly overview from celiac disease magazine: https://www.researchgate.net/profile/Knut_Lundin/publication/232528784_Non-celiac_Gluten_Sensitivity/links/09e415098bbe37c05b000000.pdf A good overview from a sceptical but fair perspective: https://sciencebasedmedicine.org/a-balanced-look-at-gluten-sensitivity/ Another overview: https://celiac.org/celiac-disease/understanding-celiac-disease-2/non-celiac-gluten-sensitivity-2/ University of Chicago's excellent celiac site's take: http://www.cureceliacdisease.org/category/faq-non-celiac-gluten-sensitivity/ A compelling account in the British Medical Journal from an NCGI patient: http://www.bmj.com/content/345/bmj.e7982 Here's some positive news about a potential new test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 NCGI in children: NCGI and auto immune study: https://www.ncbi.nlm.nih.gov/pubmed/26026392 Also consider: Fodmaps: http://www.kcl.ac.uk/lsm/research/divisions/dns/projects/fodmaps/faq.aspx This Monash study: http://fodmapmonash.blogspot.co.uk/2015/03/the-truth-behind-non-celiac-gluten.html suggested some who think they're reacting to gluten should actually be reducing fodmaps Sibo: http://www.webmd.boots.com/digestive-disorders/small-intestinal-bacteria-sibo
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