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Found 76 results

  1. Celiac.com 03/05/2018 - While people with non-celiac gluten sensitivity (NCGS) have neither celiac disease nor wheat allergy (WA), they often do have intestinal and extra-intestinal symptoms that are related to gluten consumption. Using a double-blind placebo-controlled (DBPC) gluten challenge with crossover, a team of researchers recently set out to conduct the first assessment of NCGS rates in children with chronic, gluten-associated gastrointestinal symptoms. The research team included R Francavilla MD, PhD, F Cristofori MD, L Verzillo MD, A Gentile MD, S Castellaneta MD, C Polloni MD, V Giorgio MD, E Verduci MD, PhD, E D'Angelo MD, S Dellatte MD & F Indrio MD. They are variously affiliated with the Department of Pediatrics, San Paolo Hospital, Bari Italy; the Department of Pediatrics, Santa Maria del Carmine Hospital, Rovereto TN, Italy; the Department of Pediatrics, Catholic University, Rome, Italy; the Department of Pediatrics, University of Milan, S. Paolo Hospital, Milan, Italy; the Department of Pediatrics, Santa Maria Incoronata dell’Olmo Hospital; Cava dei Tirreni SA, Italy; the Tandoi Group Factory, Corato, Italy; and the Interdisciplinary Department of Medicine-Pediatric Section, University of Bari, Bari, Italy. Their team looked at 1,114 children with chronic gastrointestinal symptoms, but no celiac disease and WA. For children showing a positive connection between symptoms and gluten ingestion, the team offered a four-stage diagnostic challenge that included: run-in, open gluten-free diet (GFD) and DBPC crossover gluten challenge. Patients randomly received gluten (10 g/daily) and placebo (rice starch) for 2 weeks each, separated by a washout week. The gluten challenge was considered positive when accompanied by a minimum 30% decrease of global visual analogue scale between gluten and placebo. Out of 1,114 children, 96.7% showed no correlation with gluten ingestion. Thirty-six children were eligible for the diagnostic challenge. After the run-in and open GFD, 28 patients underwent gluten challenge. Eleven of these children tested positive (39.2%). This is the first such study to demonstrate the need for a DBPC for diagnosing NCGS in children, since the diagnosis is ruled out in more than sixty-percent of cases. Source: The American Journal of Gastroenterology. doi:10.1038/ajg.2017.483
  2. I have very slowly come to the conclusion that I have a problem with casein. This is despite being years into the gluten free life and having mostly avoided dairy for a long time. I say mostly because although I would never have had milk in a coffee or with cereal etc. I didn't worry too much if milk was listed in the ingredients of some gluten free processed treat or deny myself the odd milk chocolate if there was one handy. After all my reasoning would go, I deserve it for eschewing all the nice gluten things... I also hadn't given milk too much thought. I think I just thought I was probably lactose intolerant like my father. However although last time I had a fair amount of milk I got the lactose intolerance stomach signs I also got spots on my chest and back a couple of days later. I think, don't know, but think, my issues with dairy may extend to the casein protein rather than just the lactose. Well I've now had enough of my skin issues which I think are strongly linked to milk so I'm now on a new quest to try and remove dairy completely and finding it a little bit of a struggle. I hadn't realised how many of the nice gluten-free foods also contain milk. So I wondered how strict I have to be where casein is concerned. If you have an issue with it and avoid it, do you have to treat it in the same way you would gluten? Is a tiny amount in processed food enough for you to react? Should I get rid of any biscuits etc I have in which have milk listed as an ingredient? Does it matter if the ingredient is butter which I understand to have much lower casein content? What's the deal with casein?
  3. Celiac.com 11/20/2017 - People who do not have celiac disease, but who have celiac-like symptoms that improve on a gluten-free diet are prime candidates for a condition called non-celiac gluten sensitivity (NCGS). Researchers don't know much about the condition. There are no biomarkers, so they can't just do a blood test. People with this condition often experience celiac-like symptoms. Many of people with non-celiac gluten sensitivity see their symptoms improve on a gluten-free diet. However, these people may also have puzzling sensitivities to other foods that just don't seem to add up. Interestingly, foods with gluten often contain fructans, a type of fermentable oligo-, di-, monosaccharides and polyols (FODMAPs). Fructan is one such compound. Could fructan be the culprit? A team of researchers recently set out to investigate the effect of gluten and fructans separately in individuals with self-reported gluten sensitivity. The research team includes Gry I. Skodje, Vikas K. Sarna, Ingunn H. Minelle, Kjersti L. Rolfsen, Jane G. Muir, Peter R. Gibson, Marit B. Veierød, Christine Henriksen, Knut E.A. Lundin. They are variously affiliated with the Division of Cancer Medicine, Oslo University Hospital, Rikshospitalet, 0424 Oslo, Norway; the K. G. Jebsen Celiac Disease Research Centre, University of Oslo, Norway; the Department of Nutrition, Institute of Basic Medical Sciences, University of Oslo, Norway; the Department of Gastroenterology, Monash University and Alfred Hospital, Melbourne, Victoria, Australia; the Department of Immunology and Transfusion Medicine, Oslo University Hospital, 0424 Oslo, Norway; and the Centre for Immune Regulation, University of Oslo, 0424 Oslo, Norway. For their double-blind crossover challenge, the team enrolled 59 individuals without celiac disease, but who followed a self-driven gluten-free diet. The team conducted the study at Oslo University Hospital in Norway from October 2014 through May 2016. The team randomly assigned study subjects to groups. For 7 days, each group ate muesli bars containing either 5.7 grams of gluten, 2.1 grams fructans, or a placebo. Subjects then underwent a washout period that lasted until the symptoms caused by the previous challenge were resolved. Washout period was a minimum of 7 days. After the washout period, participants crossed over into a different group, until they completed all 3 challenges. To measure symptoms, the team used the gastrointestinal symptom rating scale irritable bowel syndrome (GSRS-IBS) version. They used a linear mixed model for analysis. In this study of individuals with self-reported non-celiac gluten sensitivity, researchers found that fructans induced symptoms of irritable bowel syndrome, as measured by the gastrointestinal symptom rating scale. Clinicaltrials.gov no: NCT02464150 See the article below for more information, including study results. Source: Gastrojournal.org DOI: http://dx.doi.org/10.1053/j.gastro.2017.10.040
  4. 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.”
  5. Celiac.com 08/23/2017 - A team of researchers recently set out to assess how many patients with a diagnosis of non-celiac wheat sensitivity (NCWS) still experienced symptoms of wheat sensitivity after an average follow-up time of 99 months. The research team included Antonio Carroccio, Alberto D’Alcamo, Giuseppe Iacono, Maurizio Soresi, Rosario Iacobucci, Andrea Arini, Girolamo Geraci, Francesca Fayer, Francesca Cavataio, Francesco La Blasca, Ada M. Florena, and Pasquale Mansueto. Using data collected from 200 participants from a previous study of non-celiac wheat sensitivity, performed between July and December 2016 in Italy, the team found that 148 of these individuals still followed a strict wheat-free diet. In total, 175 patients (88%) said that they had fewer symptoms after a diagnosis of non-celiac wheat sensitivity and general improvement. Of the 148 patients who adhered strictly to a gluten-free diet, 145 (98%) had reduced symptoms, compared with 30 of 52 patients who did not adhere to a gluten-free diet (58%) (P < .0001). Of the 22 patients who repeated the double-blind, placebo-controlled challenge, 20 reacted to wheat. The numbers and percentages of the 148 non-celiac wheat sensitivity patients on a strict wheat-free diet who reported that the following symptoms recurred after occasional and accidental wheat consumption: Lack of well-being 135 (91%); Tiredness 102 (69%); Foggy mind 68 (46%); Menstrual alterations 54 (36%); Anemia 46 (31%); Weight increase 45 (30%); Joint/muscle pain 35 (24%); Headache 31 (21%); Weight loss 30 (20%); Anxiety 18 (12%); Skin rash 16 (11%); Recurrent cystitis 12 (8%); Depression 10 (7%). From these numbers, the team concludes that non-celiac wheat sensitivity is a persistent condition. Clinicaltrials.gov registration number: NCT02823522. Source: Gastroenterology. DOI: http://dx.doi.org/10.1053/j.gastro.2017.03.034
  6. 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.
  7. 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
  8. Celiac.com 09/23/2015 - Wheat products are a key component of human diets worldwide. Despite the many beneficial aspects of consuming wheat products, it is also a trigger for several diseases such as celiac disease, wheat allergy, and non-celiac gluten sensitivity (NCGS). A team of researchers recently set out to examine the relationship between celiac disease, non-celiac gluten sensitivity and irritable bowel syndrome. The research team included M El-Salhy, JG Hatlebakk, OH Gilja, and T. Hausken. They are variously affiliated with the Section for Gastroenterology, Department of Medicine, Stord Hospital, Stord, Norway, the Section for Neuroendocrine Gastroenterology, Division of Gastroenterology, Department of Clinical Medicine, University of Bergen, Bergen, Norway, the National Centre for Functional Gastrointestinal Disorders, Department of Medicine, and the National Centre for Ultrasound in Gastroenterology, Department of Medicine, Haukeland University Hospital, Bergen, Norway. Celiac disease and irritable bowel syndrome (IBS) patients have similar gastrointestinal symptoms, which can result in celiac disease patients being misdiagnosed as having IBS. Therefore, celiac disease should be excluded in IBS patients. A considerable proportion of celiac disease patients suffer from IBS symptoms despite adherence to a gluten-free diet (GFD). The inflammation caused by gluten intake may not completely subside in some celiac disease patients. It is not clear that gluten triggers symptoms in NCGS, but there is compelling evidence that carbohydrates in wheat such as fructans and galactans do. Based on their results, the team feels that it is likely that NCGS patients are a group of self-diagnosed IBS patients who self-treat using a gluten-free diet. Source: Nutr J. 2015 Sep 7;14(1):92. doi: 10.1186/s12937-015-0080-6.
  9. Celiac.com 04/26/2017 - "The universe is made of stories, not atoms" — Muriel Rukeyser Helen, a woman with severe lifelong eczema/dermatitis, wrote to me a few weeks ago, saying "I have taken your advice and been strictly gluten free for five months now. The eczema inflammation is 99% gone and my skin quality has significantly improved. I do still get a bit itchy around my neck area and elbow creases, more so at night when it is warm. I have noticed a significant improvement in my asthma also. I still use antihistamines perhaps once or twice a week for runny nose. Does this mean I will need to be gluten free for life? Which of your books would you say would be the most relevant for someone in my position? Thank you for your assistance, regards, Helen. I recommended eBook: "Dermatitis Eczema: Gluten Wheat – Solving the eczema puzzle." Available at: http://www.GlutenEczema.com This is an excerpt from the chapter: "Children better off gluten/wheat". To help you get a better idea of how gluten can trigger eczema, here are narratives of some children whose eczema got better when their gluten sensitivity was recognised and treated. Most had good remission of their eczema on a gluten-free diet. Their stories told by their parents. To give context to the blood test values, the normal reference ranges were: AGA: 0–15 tTG: 0–20 Celiac disease with bad eczema Lily at five years old was diagnosed by me with celiac disease. Symptoms: eczema. Run down, pot tummy and slow growth. Tests: All of her blood tests were positive for celiac disease (tTG 120) and she had an abnormal intestinal biopsy which confirmed the bowel damage of celiac disease. AGA very high (115). Her mum said: "Lily has now been gluten-free for the last year. She came to see Dr. Ford to investigate her allergies. She had a blocked nose and troublesome eczema. She also had quite a pot tummy and Dr Ford said that her growth was slow (she was thin and short). Dr Ford said that she needed blood tests for gluten and celiac disease: these were both positive. So she had an endoscopy, which was abnormal, showing the villus blunting of celiac disease. Therefore, she had to go on a gluten-free diet." "Since she has been gluten-free over the last year, she has gotten better and better. She no longer has lots of infections, she has more energy, and interestingly, her allergies have nearly gone away. Her skin used to give her a lot of trouble – she had a lot of bad eczema. Her eczema now is very much better and she only has small amounts left in her creases. And if she has any gluten errors it flares up." Recovering from gluten-eczema Isabella, at two years old, was recovering from her eczema. I asked her mother what happens if Isabella has any gluten. Her mum said: "Isabella had eczema all over her body. She was on strong steroid creams. She had the positive blood tests for gluten antibodies (AGA of 66), so it was suggested I take her off the gluten. I did this." "I took her off gluten and it has cleared her eczema up. Now, when she does eat anything with gluten in it she gets little patches of eczema on her legs. I just can't believe it!" Blood all over her sheets Emily was three years old. She had a high anti-gliadin antibodies (AGA 48) but she did not have celiac disease (normal tTG). Her mother told me: "Initially her skin was really sore, dry and scratchy. She would have blood all over her sheets in the morning from scratching while she was asleep. Her poos were really sloppy and nasty." "But after taking gluten out of her diet her skin cleared up within days, and the itchiness of her skin settled. She was just so much happier." Dry skin and worsening eczema Breanna and Alyssa, twins aged 3 years. Symptoms: eczema and poor sleeping. Both had high AGA levels (60 & 68) and normal tTG levels (5 & 3). They did not warrant an endoscopy. Mum writes: "My twins were born at 26 weeks. During our stay in NICU they developed very dry skin, at times you felt like you wanted to peel the dry skin off. The word eczema was mentioned on more than one occasion. There is a history of eczema and asthma in our family, so at the time I tried to deny all knowledge of that word." Dry skin and worsening eczema "Eleven weeks later we took our twins home. Their skin was still dry and we were given a moisturiser to use as required. As time went on their skin didn't improve and eventually at around the age of one year they showed real signs of eczema. We started to use steroid creams: 1% Hydrocortisone to start with, then onto a much stronger steroid cream. Soon, this stronger cream was used all the time to control their eczema as the other creams were of no real help." "At around 2 years old, while at a playgroup session one of the mothers was talking about her daughter's eczema and how she had gone to see Dr Ford and now there were no signs of it there today. Of course my ears pricked up. I was interested to hear how her diet affected her skin and the word gluten was mentioned." At the time it didn't mean a lot to me. Therefore, I made an appointment and I was excited to think that we might be able to change the girls' diet and their skin condition may improve. They had positive gluten blood tests "The day arrived and we had our first visit. He talked to us about this gluten thing and that if we could avoid it then their skin might make a dramatic improvement. I was keen to try anything. Firstly, they had to have some skin prick allergy tests – it showed a reaction to wheat among a few other things. Next, the girls had a blood test confirming that they definitely had an allergy to gluten, and their iron levels were also very low. The final step was to set about changing their diet. I can honestly say that this was daunting to start with but once we got our heads around the issues, it became second nature." Sleeping at last! "One of the biggest changes we have noticed is that they are now sleeping so much better. I was constantly up and down to them all night and was getting so worn out now we can almost guarantee a full nights sleep, Yahoo!! The other major issue was the steroid cream use: we haven't used the strong steroid cream for 12 months. So for me, going gluten-free was a huge step in the right direction." Gluten-free gets easier "There are heaps of products that we can use and the staff in shops were very helpful with information and getting stock in. I have since brought a number of cook books all with sections on gluten-free that have been helpful. When baking or cooking, I now just do it the gluten-free way and everyone in our family eats it with no complaints. We have all adjusted accordingly." "Our thanks goes out to Dr Ford for all his help. I also send good luck to all of you who are about to embark on a gluten-free diet – the rewards will be well worth the sacrifice." Sharon Losing her hair – alopecia Ella, age 6 years. Symptoms: eczema, alopecia, moody, abdominal pain, multiple food allergy. AGA high (49), tTG normal (3), EMA negative, Small bowel biopsy, normal. Mum writes: "Ella is now age 6 years. At age 3 years Ella started to lose her hair. After a year of scalp treatment, by the time she turned 5 years old, all but one small patch had regrown." Losing her hair "About 4 months later a small patch of alopecia reappeared and her hair loss rapidly progressed from there. At this time her eczema, always present in a mild form, worsened and became almost impossible to control. Many forms of treatment were tried and all failed. Within the year Ella had lost all her hair and was constantly itching. Over this time Ella also complained of tummy pains and weight loss." Diagnosed as gluten-sensitive "As her father has celiac disease, we decided to get Ella checked. Her blood test was positive but the biopsy was negative for celiac disease. In discussion with the GP and some unanswered questions we eventually had an appointment with Dr Ford. After this appointment, Ella started on a strict gluten-free diet and has remained on it for the past 4 months." Amazing results "The results are amazing. Ella has stopped most of her scratching and she is far more comfortable. Ella's mood has changed and she is now a very happy little girl. Best news of all is that she has started to have a small amount of hair growth." "At no time, despite the variety of people seen and the fact that they were aware of family history, did anyone suggest getting Ella tested for celiac disease. It was purely parents at the end of their tether, pushing." Sue She was getting worse eczema Tessa, age 2 years. Symptoms: eczema, poor growth, multiple food allergy. Tests: AGA high (51), tTG normal (7), Biopsy not done. Mum writes: "Tessa was our first-born baby. She weighed a healthy 8lb and was breastfed until 6 months. I introduced solids at 5 months. Having given a bottle of expressed milk every night since she was 10 weeks, I found that she preferred this and weaned herself." Eczema at the time of solids "Tessa had eczema from the time she commenced solids, but it was manageable with mild steroid ointments. However, at six months her eczema became more distressing for her. She had her first course of antibiotics at this age." "We felt that we were using more and more topical steroids, oral antibiotics, and even a course of oral prednisone. None of these treatments felt satisfactory to her family. We needed a solution to prevent the problem. Not only was her skin getting worse but also she was quietly losing weight. A friend suggested visiting Dr Rodney Ford." Allergies to egg, dairy and peanuts "Our first visit involved an extensive medical history and allergy testing. Tessa was found to be allergic to egg, dairy, peanut, grass, and cats. We excluded the food allergens from her diet. But, over the next four months Tessa had a dramatic weight loss, going from the 50 percentile to falling off the Child Health nurse growth graph. She required more steroids, and antibiotics." Waking screaming "My angel baby, who had slept through the night from age 6 weeks, was now 16 months and woke every night screaming inconsolably. We were getting desperate, putting in an awful lot of work by eliminating dairy and egg with no rewards. With a new baby due to be born Tessa's exhausted parents needed answers. Back to Dr Ford we went. He suggested running some blood tests to check her gluten markers. It came back that her Anti-Gliadin Antibody was 51, suggesting that she was gluten-sensitive." Gluten-free as well! "We trailed a gluten-free, egg-free, and dairy-free diet. This was a totally overwhelming prospect for our family, as at that time we were introducing a two-week-old baby to the world! Luckily, Tessa's father, who too is an adult sufferer of eczema, was able to take all this on board and went off grocery shopping, bringing back lots of acceptable goodies. It was also at this time that I learnt of the real benefits of living in a small town." We had a gluten-free buddy "We were very fortunate that another mother of gluten-sensitive children took me by the hand grocery shopping, showing me how easy it is! Also, the church where we regularly attend made a whole week's worth of meals for the freezer which all fitted the requirements for Tessa's diet. All this really just through word of mouth!" At last she is better "We are so excited to see such an improvement. She has just been allergy tested again and we are able to introduce egg and dairy again. I had been giving small amounts of dairy already, hoping that she would have grown out of this. At one point all she would eat was cheese, so to get some calories into her that is what we fed her. Having Tessa on a gluten-free diet requires us to be organized and creative. It is especially difficult when you spontaneously decide to go out for the day: there are no guarantees that we will find appropriate food for Tessa, so usually we pack a lunch." Gluten-free is expensive "The food that is gluten-free is also usually twice the price of other foods. We have had to learn to bake, which is something I still struggle with. We have had some major disasters, especially baking cakes. Whenever it seems too difficult, and we are out of ideas, it is not too hard to find a reason to keep trying." Improved gluten free "Our little girl has significantly improved since becoming gluten-free. She has not required antibiotics or oral steroids for eczema since commencing the diet. We can now apply the topical steroid ointments as prescribed "sparingly". She no longer gets up in the morning, her pyjamas and sheets covered in blood, and forehead weeping. She can play in sandpits without fear that the sand will get into her sores, and once again they will be infected." "We are so lucky that something so simple as changing Tessa's diet has had such a dramatic affect on her life." Mum Think about the gluten-eczema link As you have been told by these families, gluten has been found to be an important trigger for eczema in these children. My research findings show that the majority of people over three years of age, who have ongoing and troublesome eczema, have gluten-sensitivity. When gluten is removed from their diets, they get better. Advice about blood testing for gluten and for information on a gluten-free diet can be found on our webpage: http://www.DrRodneyFord.com and in the previous chapters. This is an excerpt from Dr Rodney Ford's eBook, "Dermatitis Eczema: Gluten Wheat – Solving the eczema puzzle" Available at: http://www.GlutenEczema.com Written in the spirit of cooperation and knowledge sharing.
  10. Celiac.com 04/10/2017 - Fibromyalgia syndrome is a debilitating condition of unknown cause, and only treatment approaches at present offer only limited relief from symptoms. Some fibromyalgia sufferers seem to benefit from a gluten-free diet, but there's not a great amount of data on the benefits of a gluten-free diet in fibromyalgia sufferers who do not have celiac disease. A team of researchers recently set out to describe 20 selected patients with fibromyalgia, but without celiac disease, whose symptoms improved when they followed a gluten-free diet. The research team included Carlos Isasi, Isabel Colmenero, Fernando Casco, Eva Tejerina, Natalia Fernandez, José I. Serrano-Vela, Maria J. Castro, and Luis F. Villa. They are variously associated with the Department of Rheumatology, Hospital Puerta de Hierro, Majadahonda Madrid, Spain; the Department of Pathology, Hospital Infantil Niño Jesús, Madrid, Spain; the Department of Pathology, Hospital Puerta de Hierro, Majadahonda Madrid, Spain; the Department of Gastroenterology, Hospital Puerta de Hierro, Majadahonda Madrid, Spain; the Celiac and Gluten Sensitive patients Association of Madrid, Madrid, Spain; and with the Department of Immunology, Hospital Doce de Octubre, Madrid, Spain. What researchers now call non-celiac gluten-sensitivity is a daily common, yet treatable condition, with a range of symptoms that dovetail with many symptoms of fibromyalgia, including chronic musculoskeletal pain, asthenia, and irritable bowel syndrome. All patients underwent anti-transglutaminase assay, duodenal biopsy, and HLA typing. To rule out celiac disease in their test subjects, the research team used negative anti-transglutaminase assay results, together with the absence of villous atrophy in the duodenal biopsy. All patients showed signs of intraepithelial lymphocytosis with no villous atrophy. The doctors defined a positive clinical response as the achievement of at least one of the following: remission of fibromyalgia-associated pain, return to work, return to normal life, or the discontinuation of opioids. Doctors followed on the patients from 5 to 31 months, with a follow-up period of 16 months, on average. The level of widespread chronic pain improved dramatically for all patients; for 15 patients, chronic widespread pain was no longer present, indicating remission of FM. Fifteen patients returned to work or normal life. In three patients who had been previously treated in pain units with opioids, these drugs were discontinued. Fatigue, gastrointestinal symptoms, migraine, and depression also improved together with pain. Patients #2 and #3, both with oral aphthae, went into complete remission for psoriatic arthritis and undifferentiated spondyloarthritis. These results strengthen the idea that non-celiac gluten sensitivity may play a key role in the development of fibromyalgia syndrome. Source: Rheumatol Int. 2014; 34(11): 1607–1612. Published online 2014 Apr 12. doi: 10.1007/s00296-014-2990-6
  11. Celiac.com 02/20/2017 - Nickel is the most common cause of contact allergy, and nickel exposure can result in systemic nickel allergy syndrome, which mimics irritable bowel syndrome (IBS). Nickel is also found in wheat, which invites questions about possible nickel exposure from wheat in some cases of contact dermatitis. However, nickel hasn't really been studied in relation to glutenâ€related diseases. A research team recently set out to evaluate the frequency of contact dermatitis due to nickel allergy in NCWS patients diagnosed by a doubleâ€blind placeboâ€controlled(DBPC) challenge, and to identify the characteristics of NCWS patients with nickel allergy. The research team included Alberto D'Alcamo, Pasquale Mansueto, Maurizio Soresi, Rosario Iacobucci, Francesco La Blasca, Girolamo Geraci, Francesca Cavataio, Francesca Fayer, Andrea Arini, Laura Di Stefano, Giuseppe Iacono, Liana Bosco, and Antonio Carroccio. The are variously affiliated with the Dipartimento di Biologia e Medicina Interna e Specialistica (DiBiMIS), Internal Medicine Unit, University Hospital, Palermo, Italy; the Surgery Department, University Hospital, Palermo, Italy; Pediatric Unit, "Giovanni Paolo II" Hospital, Sciacca (ASP Agrigento), Italy; DiBiMIS, Gastroenterology Unit, University Hospital, Palermo, Italy; Pediatric Gastroenterology Unit, "ARNAS Di Cristina" Hospital, Palermo, Italy; Dipartimento di Scienze e Tecnologie Biologiche Chimiche e Farmaceutiche (Ste.Bi.CeF), University of Palermo, Palermo, Italy. Their team conducted a prospective study of 54 women and 6 men, with an average age of 34.1 year, and diagnosed with NCWS from December 2014 to November 2016. They also included a control group of 80 age†and sexâ€matched subjects with functional gastrointestinal symptoms. Patients reporting contact dermatitis related to nickelâ€containing objects were given a nickel patch sensitivity test. The tests showed that six out of sixty patients (10%) with NCWS suffered from contact dermatitis and nickel allergy, and this frequency was statistically higher than observed in the 5 percent seen in the control group. Compared to NCWS patients who did not suffer from nickel allergy, NCWS patients with nickel allergy commonly showed a higher rates of skin symptoms after wheat consumption. Contact dermatitis and nickel allergy are more frequent in NCWS patients than in subjects with functional gastrointestinal disorders. Moreover, large numbers of these patients showed cutaneous manifestations after wheat ingestion. Nickel allergy should be evaluated in NCWS patients who have cutaneous manifestations after wheat ingestion. More study is needed to determine the relationship between nickel sensitivity and NCWS. Source: Nutrients 2017, 9(2), 103; doi:10.3390/nu9020103
  12. Celiac.com 12/13/2016 - One in five people with celiac disease have a sensitivity to oats. Could that be the real issue behind claims of adverse reactions to Cheerios and other General Mills products? In an effort to answer questions regarding the safety of gluten-free Cheerios for people with celiac disease, we recently ran an article on warnings by the Canadian Celiac Association that Cheerios, and other General Mills cereals labeled 'Gluten-Free' are unsafe, are likely to be contaminated with trace amounts of gluten. Celiac.com found those claims to be lacking in evidence, and grounded mainly on unsupported claims that the proprietary process used by General Mills to sort oats is somehow problematic, and likely to permit 'hot spots' of gluten contamination that can exceed the 20ppm gluten-free FDA standard. Along with unsupported claims about General Mills' sorting process, the Canadian Celiac Association seems to base their opinion on vague claims of unnamed people with celiac disease suffering adverse reactions after eating the cereals. Yet, so far, no one has documented any actual problem with General Mills' method for sorting gluten-free oats, and certainly no one has shown any kind of a systemic problem, as the Canadian Celiac Association seems to allege. No evidence has been offered up to support any such claims. Again, to our knowledge, no one has provided any evidence of any actual gluten contamination in any box or batch of General Mills Gluten-Free cereals. Interestingly, that very lack of evidence to support claims of gluten contamination is cited by the Celiac Disease Foundation in its endorsement of General Mills Gluten-Free cereals. Recent scientific research has shown that around 8% of celiacs are sensitive to certain varieties of oats, and the Celiac Disease Foundation recently indicated in a response to a question on this topic posed by "cyclinglady," who is a Celiac.com board moderator, that nearly 20% of people with celiac disease may also suffer from oat sensitivity, and they suggest that oat sensitivity is the likely culprit behind any sensitivities to the product. The Celiac Disease Foundation's full letter was posted on Celiac.com's Gluten-Free Forum by cyclinglady reads as follows: "This is interesting. I sent an email asking the Celiac Disease Foundation about gluten-free Cheerios which they endorse/support, but the Canadian Celiac Disease Organization and the Gluten Free Watchdog do not? What do you all think?" She includes the full response by the Celiac Disease Foundation, which reads: "Aside from the initial contamination in Cheerios when they were first put on the market, Cheerios has had no other issues with the gluten-free status of their cereals. Most people with celiac disease can tolerate gluten-free oats, however, about 20%*(sic-actual figure should be 8%, see note below) of the population with celiac disease cannot tolerate oats in any form, even if they are gluten-free. It's that population that should avoid Cheerios. Our Medical Advisory Board has no evidence that General Mills gluten-free cereals are not safe for celiac consumption. General Mills is a proud sponsor of Celiac Disease Foundation, and they understand the importance of safe gluten-free food to our community. In fact, we enjoy Cheerios at the National Office ourselves where half of us have celiac disease. Cheerios only need to be avoided by those with celiac disease who also cannot tolerate oats." So, once again, the Celiac Disease Foundation endorses General Mills Gluten-Free Cheerios, and by implication, Lucky Charms and other cereals, as safe for people with celiac disease, with no medical evidence to the contrary. However, they do recommend that people with oat sensitivities avoid oat products. This runs counter to the warning by the Canadian Celiac Association that General Mills products were "unsafe" and the General Mills "had problems" with its sorting process. The fact that the folks at the Celiac Disease Foundation, including those with celiac disease, say they eat Gluten-Free Cheerios provides another positive testimonial that Cheerios are safe for people with celiac disease. However, it really all boils down to basing any proclamations about gluten-free safety on actual evidence, not stories, or opinions, or things we heard. In their letter, the Celiac Disease Foundation notes that "Our Medical Advisory Board has no evidence that General Mills gluten-free cereals are not safe for celiac consumption." Until evidence appears to the contrary, the overwhelming evidence is that General Mills gluten-free Cereals, including Cheerios and Lucky Charms, among others, are safe for people with celiac disease, but should be avoided by anyone with oat sensitivities. Anyone claiming they are not safe for people with celiac disease is simply not basing their claim on hard evidence. Of course, people should base their diets on their own experience, especially people with celiac disease, and/or sensitivities to oats or other things beyond gluten. Stay tuned for news on this and other important gluten-free topics. Sources: Cherrios and the Celiac Disease Foundation New clue in celiac disease puzzle: Cause of oat toxicity explained Scientists Catch Culprit Oat Peptides That Trigger Celiac Immune Response Should Celiacs Eat Oats? Depends on the Oat This article was updated on 12/14/2016 to include more sources, and to clarify the CDF's letter that was posted in our forum. *Corrected to 8% on 12/14/2016 per CDF web site
  13. Celiac.com 01/09/2015 - A recent article by Jody Berger provides a cautionary tale for anyone suffering from non-classic symptoms of gluten-sensitivity or celiac disease. Berger, it turns out, has non-celiac gluten-sensitivity. Sounds simple enough, right? But in Berger’s case, it took her one year and visits to a dozen doctors to get an accurate diagnosis. Berger’s main symptom was tingling in her fingertips, a feeling of slight pins and needles, as if they were waking from a deep sleep. The sensation wasn’t painful, she said, but it was persistent, and concerned her enough that she sought medical help to figure out the cause. When her first doctor diagnosed her with multiple sclerosis after a very brief visit, Berger sought a second, then a third, then a fourth opinion. In the course of her many visits, doctors told her she had nutritional deficiencies, heavy metal toxicity, Lyme disease, and depression. After a dozen visits, she finally found an osteopath who was “well-versed in systems thinking,” and another physician who had trained in ayurvedic medicine, a holistic system of healing. The tingling, which the first doctor believed to be a sign of MS, is actually a fairly common, though not classic, symptom of gluten sensitivity. This story highlights the amount of work patients can face when they present with atypical symptoms of gluten-sensitivity. Many times, well-intended doctors can simply miss the dietary connection and get the diagnosis wrong. Do you have a similar story of well-intended, but misguided doctors wrongly diagnosing gluten-sensitivity or celiac disease? Read more about Berger’s year-long Odyssey here.
  14. Celiac.com 10/31/2016 - Responding to observations and reports that many patients with postural tachycardia syndrome (PoTS) adopt a gluten-free diet without medical consultation, a team of researchers recently set out to evaluate the prevalence of celiac disease and self-reported gluten sensitivity in patients with PoTS, and to compare the results against data from the local population. The research team included HA Penny, I Aziz, M Ferrar, J Atkinson, N Hoggard, M Hadjivassiliou, JN West, and DS Sanders. They are variously affiliated with the Academic Department of Gastroenterology Departments of Cardiology, Radiology, and Neurology at Royal Hallamshire Hospital, and Upperthorpe Medical Centre in Sheffield, UK. For their study, the team recruited 100 patients with PoTS to complete a questionnaire that screened for gluten sensitivity, related symptoms and dietary habits. They also screened patients for celiac disease. For comparison, they calculated local celiac prevalence from a total of 1,200 control subjects (group 1) and another 400 control subjects (group 2), frequency matched for age and sex, who completed the same questionnaire. Overall, 4/100 (4%) patients with PoTS had serology and biopsy-proven coeliac disease. This was significantly higher than the local population prevalence of celiac disease (12/1200, 1%; odds ratio: 4.1, 95% confidence interval: 1.3-13.0; P=0.03). PoTS patients also had a higher prevalence of self-reported gluten sensitivity (42 vs. 19%, respectively; odds ratio: 3.1, 95% confidence interval: 2.0-5.0; P<0.0001). This is the first study to show a possible connection between gluten-related disorders and PoTS. They note that a prospective study which examines this relationship further might promote better understanding and treatment of these conditions. Source: Eur J Gastroenterol Hepatol. 2016 Sep 7.
  15. Celiac.com 09/12/2016 - Wheat gluten and related proteins can trigger an autoimmune enteropathy, known as celiac disease, in people with genetic susceptibility. However, some people experience a range of gluten reaction symptoms, but without the classic blood or gut markers for celiac disease. The etiology and mechanism of these symptoms are unknown, and so far, researchers have found no biomarkers to explain the issue. A research team recently set out to determine if sensitivity to wheat in the absence of celiac disease is associated with systemic immune activation that may be linked to some type of enteropathy. The research team included Melanie Uhde, Mary Ajamian, Giacomo Caio, Roberto De Giorgio, Alyssa Indart, Peter H Green, Elizabeth C Verna, Umberto Volta, and Armin Alaedini. They are variously affiliated with the Celiac Disease Center and the Department of Medicine at Columbia University Medical Center, New York, New York, USA, Departments of Medical and Surgical Sciences and Digestive System, Centro di Ricerca Biomedica Applicata (C.R.B.A.), University of Bologna, St. Orsola-Malpighi Hospital, Bologna, Italy, and the Institute of Human Nutrition at Columbia University Medical Center, New York, New York, USA. The study included a group of healthy control subjects, patients with clinical celiac disease, and patients who reported symptoms after wheat consumption, but in whom doctors had ruled out celiac disease and wheat allergy. The team analyzed test samples for markers of intestinal cell damage and systemic immune response to microbial components. Patients with wheat sensitivity showed sharply increased serum levels of soluble CD14 and lipopolysaccharide (LPS)-binding protein, as well as antibody reactivity to bacterial LPS and flagellin. Circulating levels of fatty acid-binding protein 2 (FABP2), a marker of intestinal epithelial cell damage, were much higher in the affected individuals, and correlated with the immune responses to microbial products. Patients with wheat sensitivity who observed a gluten-free diet saw levels of FABP2 and immune activation markers move rapidly toward normal. These findings show a state of systemic immune activation, coupled with a compromised intestinal epithelium, that triggers gastrointestinal symptoms in certain individuals who have wheat sensitivity, but don't have celiac disease. Source: Gut. doi:10.1136/gutjnl-2016-311964
  16. Celiac.com 12/03/2008 - Xanthan Gum is a polysaccharide used as a binder in many gluten-free products. In the production of xanthan gum, sucrose or glucose is fermented by a bacterium, Xanthomonas campestris. After a four-day fermentation period, the polysaccharide is precipitated from a corn-based growth medium with isopropyl alcohol, dried, and ground into a fine powder. When added to a liquid medium, a slippery, sticky gum is formed, and this substance works well in holding baked goods together, or keeping separate liquid ingredients in suspension in salad dressings and sauces. While the above description doesn't make it sound very appetizing, what's the problem with xanthan? Some people develop an allergy to xanthan, with gastrointestinal symptoms such as bloating, gas, and diarrhea. Even consumption of a very minor amount can lead to days and days of recovery and many trips to the bathroom. Hmm. Sound like anything we've heard before? And that's the problem. Experiencing a xanthan reaction can make you question your gluten-free diet, make you think you were accidentally exposed to gluten, or mystify you completely. A xanthan reaction can also precipitate migraine headaches, skin itchiness, and for those exposed to large amounts, such as bakery workers, nose and throat irritation. Symptoms of xanthan sensitivity become more prevalent with increasing exposure, so that can be one important clue. If you've suddenly started baking alot, or become addicted to a new brand of gluten-free cookies, and you start to have increased gastrointestinal symptoms, you may want to consider ruling out an adverse reaction to xanthan gum. What's a body to do? Guar gum makes a good substitute, and it is also less expensive. How did I become aware of this? Well, actually I have known about this for quite awhile, but since xanthan gum is in so many gluten-free products, I thought that sensitivity to xanthan must be a rare and isolated occurrence. Then two things happened to change my mind. I began baking a lot of gluten-free products for a business venture, and suddenly started having some gastro-intestinal problems, after being healthy for so long. I didn't have the severe pain of a gluten reaction, but otherwise my symptoms were eerily similar, particularly the bloating. I had already decided to lay off the baking (and tasting) as much as I could, and had narrowed the possibilities down to either tapioca starch or xanthan gum. Then, a student in one of my cooking classes let me know that she had a severe allergy to xanthan, and described her symptoms. They were identical, except in severity. I reformulated my recipes using only guar gum for my next stretch of gluten-free baking, and I had no problem at all. I certainly hope that I do not develop a reaction to Guar gum, which is the ground carbohydrate storage portion of the guar bean. I have not seen reports of allergy or sensitivity to guar gum, but will do a little more research for my own knowledge, which I will share in the future. By no means am I advocating that all people following a gluten-free diet give up products made with Xanthan gum. But, if you do not feel that the diet is helping you, and are still symptomatic, a sensitivity to Xanthan gum is one possibility that needs to be ruled out.
  17. Celiac.com 07/18/2016 - Researchers still don't have a very good understanding about what triggers non-celiac wheat sensitivity. To get a better idea, a team of researchers recently set out to examine the inflammatory response in the rectal mucosa of patients with well-defined non-celiac wheat sensitivity. Specifically, they wanted to look at type 1 innate lymphoid cells in the rectal mucosa of those patients. The research team included Diana Di Liberto, Pasquale Mansueto, Alberto D'Alcamo, Marianna Lo Pizzo, Elena Lo Presti1, Girolamo Geraci, Francesca Fayer, Giuliana Guggino, Giuseppe Iacono, Francesco Dieli, and Antonio Carroccio. They are variously affiliated with the Central Laboratory of Advanced Diagnosis and Biomedical Research (CLADIBIOR), University of Palermo, Palermo, Italy, the Dipartimento di Biopatologia e Biotecnologie Mediche (DIBIMED), University of Palermo, Palermo, Italy, the Dipartimento Biomedico di Medicina Interna e Specialistica (DIBIMIS), University of Palermo, Palermo, Italy, the Surgery Department at the University of Palermo in Palermo, Italy, and with the Pediatric Gastroenterology, ARNAS Di Cristina Hospital, Palermo, Italy 6Internal Medicine, Giovanni Paolo II Hospital, Sciacca (ASP Agrigento), Palermo, Italy. For their study, the team included 22 patients with irritable bowel syndrome (IBS)-like clinical presentation, diagnosed with non-celiac wheat sensitivity by double-blind placebo-controlled challenge. As control subjects, they used eight IBS patients who were not improving on wheat-free diet. Two weeks after each of the subjects consumed 80 grams of wheat daily as part of an oral challenge, the researchers isolated cells from rectal biopsies and thoroughly characterized them using fluorescence-activated cell sorting analysis for intracellular cytokines and surface markers. Analysis of the rectal biopsies of wheat-challenged non-celiac wheat sensitivity patients showed that a significant mucosal CD45+ infiltrate consisted of CD3+ and CD3− lymphocytes, with the latter spontaneously producing more interferon (IFN)-γ than IBS controls. About 30% of IFN-γ-producing CD45+ cells were T-bet+, CD56−, NKP44−, and CD117−, defining them as a type-1 innate lymphoid cells (ILC1). IFN-γ-producing ILC1 cells significantly decreased in 10 patients analyzed 2 weeks after they resumed a wheat-free diet. This study shows that IFN-γ-producing ILC1 cells infiltrate rectal mucosa, promoting the lymphoid cell population, which gives rise to non-celiac wheat sensitivity. Source: Clinical and Translational Gastroenterology, 2016 doi:10.1038/ctg.2016.35
  18. Celiac.com 07/05/2016 - Principal Investigator: Amrit P.S. Narula M.D, F.A.C.P, F.A.C.G, F.A.C.N., A.G.A.F Study Coordinator: Alicia Mercuri, PA-C Background Research estimates that approximately 18 million Americans have gluten sensitivity. That is six times more than patients confirmed with celiac disease. Non-celiac gluten sensitivity is defined as those individuals who cannot tolerate gluten in the diet and experience the same symptoms attributed to celiac disease, but lack antibodies and intestinal damage as seen in celiac disease. A dietary supplement called ZyGluten was developed from in vitro studies, not in vivo. The primary aim in its development was a supplement which, if taken at the beginning of a meal, would hydrolyze gluten concentration in ingested food. Foods tested included McDonald's hamburger, white sliced bread, a plain bagel, macaroni and cheese, spaghetti, a muffin, and frozen pizza. The amount of gluten was measured at 0, 30 and 60 minutes after the introduction of ZyGluten. In all samples, gluten measured at the end of 60 minutes was less than 20 ppm. ZyGluten is a compound of amylases, proteases, and lipase enzymes with probiotics, specifically Lactococcus lactis and Lactococcus cremoris. It is derived from plant and microbial sources. Inclusion Criteria Ages 18-80 years Physician diagnosed gluten sensitivity by history and experienced symptoms of gluten sensitivity for at least 1 month prior to involvement Willing to take supplement twice daily for 2 weeks Sign informed consent Exclusion criteria Active Inflammatory Disease Celiac disease confirmed by antibodies and duodenal biopsy Peptic ulcer disease Lactose intolerance Pregnant or lactating women Received any experimental drug within 30 days of enrollment Methods 27 patients, all of whom met the inclusion criteria, were selected to take 2 capsules of ZyGlutens before 2 major meals of the day for 2 weeks. 23 patients were female and 4 were male, with ages ranging from 25-77. The following symptoms were assessed at baseline, week 1, and week 2 which was the conclusion of the study: Abdominal pain Diarrhea Constipation Headaches Joint pain Fatigue The severity of symptoms was measured as mild, moderate, or severe, and none if symptoms were absent. All patients were contacted by phone within 48 hours of start of the trial to assess for any adverse effects. Following parameters were checked at baseline, week 1, and week 2: Weight Height Blood pressure Pulse rate Respiration rate Patients were not charged or reimbursed for their participation in the study. Results The following number of patients (27) had these symptoms at baseline: None Mild Moderate Severe Abdominal Pain/Cramping 1 1 16 9 Bloating/Distention 0 3 9 15 Diarrhea 10 4 2 11 Constipation 16 2 3 6 Headaches 11 5 7 4 Joint Pains 12 2 9 4 Fatigue 3 4 5 15 The following number of patients (23) had these symptoms at week 1: None Mild Moderate Severe Abdominal pain/Cramping 10 7 4 2 Bloating/Distention 9 10 1 3 Diarrhea 16 5 2 0 Constipation 20 1 1 1 Headaches 17 2 3 1 Joint Pains 14 2 4 3 Fatigue 7 8 3 5 The following number of patients (23) had these symptoms at week 2: None Mild Moderate Severe Abdominal Pain/Cramping 15 4 2 2 Bloating/Distention 14 6 1 2 Diarrhea 21 1 1 0 Constipation 21 1 0 1 Headaches 16 5 1 1 Joint Pains 17 3 2 1 Fatigue 10 7 1 5 The following number of patients rated their symptom improvement as: No improvement: 0 Improved: 4 Markedly improved: 19 Adverse Effects No patients reported any adverse effects. Participants Twenty-seven participants were enrolled in the study. Two patients withdrew from the study; one of which had a scheduling conflict with follow-up visits and one stopped taking the medication due to increased sleepiness after two pills. Two patients were lost to follow-up. These four patients were excluded from analysis. Conclusion In conclusion, ZyGluten study is a 2 week open labeled trial. Our outcome so far has shown to be extremely efficacious with no significant side effects. There was no significant difference found in patients who complained of headaches or joint pain. The majority of the patients found significant improvement in their symptoms of abdominal pain, bloating, changes in bowel habits, and fatigue. In fact, 83% of patients rated that their symptoms markedly improved, and 17% rated an improvement in their symptoms. Patient Testimonials *The medication was known by patients as ‘Gluten Buster' during the clinical trial. "Medication has given me more freedom. I am no longer afraid to eat, especially away from home. I am very pleased with the medication".-MF "My symptoms have improved. I would like to keep taking this if I can, especially since it's natural, to see how long I can go without an endoscopy".-MH "I feel that this pill has made a tremendous improvement in my condition". –BW "Bloating is gone. Stools seem to be more formed. Feeling good". –PS "It's wonderful to not be limited in what I can eat. It's great not to have the symptoms of pain, etc. when eating gluten foods". –JH "Great for bloating".-JF "Very little of passing gas. I feel good". -PW "Bloating is a lot better". -LW "I have not had any cramping or urgency to have a BM after a meal. My bowel movements are now normal. I have had no GI distress since on the meds". –KY "Gluten Buster has been a miracle pill. After so many years of having bowel problems, I never knew what it was like to have a regular bowel movement. I have had no problems with digestive system since I starting taking these pills". -JM "Medication was very helpful". –KO "My experience with the Gluten Buster that Dr. Narula has given me to take has been simply amazing. It has made my quality of life so much better. He is an amazing doctor to help those that otherwise thought there was no hope! I feel great"!-CM "Seems a little bit better. Still have IBS. Still have a lot of gas and bloating."-AM "It has been helping to go to the bathroom. The weight is going up and the stomach is going down a little bit".-SH "Before taking the medicine, mornings were hard because of bloating and diarrhea. Now I feel great in the morning".-GK "Gluten Buster is a life changer. Will definitely go on it when available in market." -MC "It is helping with bloating and gas. Has improved all of my GI symptoms. Overall, I can eat anything, including French fries and food I could not eat before (Super Pill)". -MK "I feel it has improved. Still have bloating, but eating regular food. Diarrhea has improved, no pain in stomach or abdomen". -BS "I feel 10x better than I did before starting the medication. No stomach cramps of bloating, I only have a BM twice/day. Feel great!" -JB "I am doing 100% better now since I have been taking the Gluten Buster meds". - JZ "Passing more gas, feeling better". -ML "I'm feeling better. I'm eating anything I want, not sticking with gluten free food. If it's due to taking the Gluten Buster, then I would still take it". -BS "It has made a big difference in bloating and abdominal pain. I would like to continue taking it". -JP "My stomach feels fantastic when I take the product. This should be available for all people with gluten sensitivity. This would be a great idea for Shark Tank. It needs to be available to the masses! I don't know how my stomach will survive without it, especially at the holidays". -LT References Am J Gastroenterol. 2011 Mar;106(3):508-14; quiz 515. doi: 10.1038/ajg.2010.487. Epub 2011 Jan 11. Gluten causes gastrointestinal symptoms in subjects without celiac disease: a double-blind randomized placebo-controlled trial. Biesiekierski JR1, Newnham ED, Irving PM, Barrett JS, Haines M, Doecke JD, Shepherd SJ, Muir JG, Gibson PR. The Oslo definitions for celiac disease and related terms. Jonas F Ludvigsson,1,2 Daniel A Leffler,3 Julio C Bai,4 Federico Biagi,5 Alessio Fasano,6 Peter H R Green,7 Marios Hadjivassiliou,8 Katri Kaukinen,9 Ciaran P Kelly,3 Jonathan N Leonard,10 Knut Erik Aslaksen Lundin,11 Joseph A Murray,12 David S Sanders,13,14 Marjorie M Walker,14 Fabiana Zingone,15 Carolina Ciacci16 Food Allergy - An Overview (PDF|1 MB). DHHS. NIH. National Institute of Allergy and Infectious Diseases. Gastroenterol Hepatol. 2014 Jun-Jul;37(6):362-71. doi: 10.1016/j.gastrohep.2014.01.005. Epub 2014 Mar 22. [Non-celiac gluten sensitivity: a critical review of current evidence]. [Article in Spanish] Molina-Infante J1, Santolaria S2, Montoro M2, Esteve M3, Fernández-Bañares F3. Gluten Causes Gastrointestinal Symptoms in Subjects Without Celiac Disease: A Double-Blind Randomized Placebo-Controlled Trial. Jessica R Biesiekierski, Evan D Newnham, Peter M Irving, Jacqueline S Barrett, Melissa Haines, James D Doecke, Susan J Shepherd, Jane G Muir and Peter R Gibson. Nutrients. 2013 Sep 26;5(10):3839-53. doi: 10.3390/nu5103839. Non-Celiac Gluten sensitivity: the new frontier of gluten related disorders. Catassi C1, Bai JC, Bonaz B, Bouma G, Calabrò A, Carroccio A, Castillejo G, Ciacci C, Cristofori F, Dolinsek J, Francavilla R, Elli L, Green P, Holtmeier W, Koehler P, Koletzko S, Meinhold C, Sanders D, Schumann M, Schuppan D, Ullrich R, Vécsei A, Volta U, Zevallos V, Sapone A, Fasano A. BMC Med. 2014 May 23;12:86. doi: 10.1186/1741-7015-12-86. Non-celiac gluten sensitivity - why worry? Lundin KE. BMC Med. 2014 May 23;12:85. doi: 10.1186/1741-7015-12-85. An Italian prospective multicenter survey on patients suspected of having non-celiac gluten sensitivity. Volta U1, Bardella MT, Calabrò Neurogastroenterol Motil. 2013 Nov;25(11):864-71. doi: 10.1111/nmo.12216. Epub 2013 Aug 12. Non-celiac gluten sensitivity: clinical relevance and recommendations for future research. Mooney PD1, Aziz I, Sanders DS. World J Gastroenterol. 2014 Jul 21;20(27):8837-45. doi: 10.3748/wjg.v20.i27.8837. Irritable bowel syndrome and food interaction. Cuomo R, Andreozzi P, Zito FP, Passananti V, De Carlo G, Sarnelli G. Expert Rev Gastroenterol Hepatol. 2012;6(1):43-55. Problems of an Emerging Condition Separate From Celiac Disease. Amy C Brown Dig Dis Sci. 1999 Jul;44(7):1317-21. Pancreatic supplements reduce symptomatic response of healthy subjects to a high fat meal. Suarez F1, Levitt MD, Adshead J, Barkin JS.
  19. Celiac.com 06/13/2016 - Researchers Umberto Volta, Giacomo Caio, and Roberto De Giorgio, of the Department of Medical and Surgical Sciences at the University of Bologna in Bologna, Italy, recently submitted a letter to the medical journal Gastroenterology. In their letter, the researchers respond to a recent paper, published by Carroccio et al, reporting on the prevalence of autoimmunity (as identified by positivity of antinuclear antibodies [ANA] and associated autoimmune disorders) in non-celiac wheat sensitivity (NCWS) compared with celiac disease and irritable bowel syndrome (IBS). They note that the study results, based on retrospective and prospective data, showed that the prevalence of ANA in NCWS was significantly higher than in celiac disease and IBS (46% in NCWS vs 24% in celiac disease and 2% in IBS, retrospectively; and 28% in NCWS vs 7.5% in celiac disease and 6% in IBS, prospectively). They note also that both retrospective and prospective analysis show autoimmune disorders (mainly autoimmune thyroiditis) in a slightly higher proportion in NCWS (29% vs 24%) than celiac disease (21% vs 20%). Meanwhile, both NCWS and celiac patients showed substantially higher rates of autoimmune disorders than IBS. In both both retrospective and prospective data, ANA showed a strong relation to HLA-DQ2 and -DQ8 in NCWS, whereas these autoantibodies were associated with autoimmune disorders only in the prospective arm. The team found these results from the Carroccio study to be scientific interesting because NCWS, more than better known autoimmune disorders, such as celiac disease, shows a surprisingly high autoimmune profile. They note that celiac disease is a well-established autoimmune condition often marked by different types of autoantibodies and associated autoimmune disorders. Such autoimmune features have not been seen so far in NCWS and the odds of these patients developing autoimmune dysfunction remains unknown. The team's data showed that only 14% of 486 patients with NCWS had an associated autoimmune disorder including thyroiditis, psoriasis, Graves disease, type 1 diabetes mellitus, and atrophic gastritis. In contrast, about 30% of 770 celiac patients showed the same autoimmune manifestations. These findings are in line with previously published data. They point out that another interesting aspect that came out of Carroccio study is the very high rate of ANA in their cohort of NCWS versus celiac disease and IBS patients. The team notes that their own experience shows ANA to be higher in celiac disease than NCWS and IBS (49% vs 37% vs 6%), which indicates a substantial autoimmune profile in celiac disease, compared with the two other conditions. They also note that evidence showing patients with NCWS to have higher rates of ANA compared with IBS is in line with the results presented by Carroccio et al. They conclude their letter by stating that consistent evidence supports a major role of adaptive immunity in celiac disease more than NCWS, and this peculiarity is reflected by a predominant occurrence of autoimmune disorders and autoantibodies (eg, ANA). However, the challenging data shown by Carroccio et al provide the basis to understand whether NCWS, like celiac disease, show a wide array of autoimmune expressions mediated by adaptive mechanisms. They call for further studies to better understand what they term the "intriguing relationship between autoimmunity and NCWS." Source: Gastroenterology. 2016 Jan;150(1):282. doi: 10.1053/j.gastro.2015.08.058. Epub 2015 Nov 23.
  20. Celiac.com 02/15/2016 - Gluten sensitivities have been documented in some dogs, but now researchers have the first solid evidence that gluten is the culprit behind a movement disorder in Border Terriers known as Epileptoid Cramping Syndrome (CECS). There have been anecdotal reports that these dogs might respond to a gluten-free diet, but no clinical studies. This changed recently, when a team of researchers set out to assess the clinical and serological benefits of a gluten-free diet in Bornder Terriers with CECS. The research team included M. Lowrie, O. A. Garden, M. Hadjivassiliou, R.J. Harvey, D.S. Sanders, R. Powell, and L. Garosi. They are variously associated with the Davies Veterinary Specialists in Hitchin, UK, the Department of Clinical Sciences and Services of Royal Veterinary College in Hatfield, UK., the Department of Neurology at Royal Hallamshire Hospital in Sheffield, UK., the Department of Pharmacology, UCL School of Pharmacy in London, UK., the Department of Gastroenterology at Royal Hallamshire Hospital, Sheffield, UK., and with Powell Torrance Diagnostic Services in Higham Gobion, UK. The team evaluated a group of six client-owned Bornder Terriers with clinically confirmed CECS. The dogs all had at least a 6-month history of CECS, with their symptoms observed and confirmed using video, and each had exhibited at least 2 separate episodes on different days. The team tested the dogs for anti-transglutaminase 2 (TG2 IgA) and anti-gliadin (AGA IgG) antibodies at presentation, and 3, 6, and 9 months after the introduction of a gluten-free diet. They performed duodenal biopsy on 1 dog. Their results showed that, upon presentation, 6 of 6 dogs had increased serum TG2 IgA levels (P = .006), and 5 of 6 dogs had increased AGA IgG levels, compared to those of controls (P = .018). After 9 months on a strict gluten-free diet, 5 of the 6 dogs showed clinical and serological improvement with CECS. The one dog that had persistently high antibody levels apparently scavenged local horse manure, which contained gluten. However, this dog, too improved after the introduction of a strict gluten-free diet. So, all of the affected dogs eventually responded favorably to a gluten-free diet. To further demonstrate the connection, two dogs suffered relapses after gluten was reintroduced into their diets. In Border Terriers, canine epileptoid cramping syndrome is caused, and perpetuated by, an adverse reaction to gluten, and thus responds well to a gluten-free diet. The takeaway for owners of Border Terriers is to keep an eye on their dogs, and work with their vets if they suspect canine epileptoid cramping syndrome; which can be effectively treated with a gluten-free diet. Source: J Vet Intern Med. 2015 Nov;29(6):1564-8. doi: 10.1111/jvim.13643. Epub 2015 Oct 25.
  21. Celiac.com 11/13/2012 - Going gluten-free seems to be the newest dietary trend that many people are following, even if it is not mandatory for one’s health. This trend was brought on by an increased number of cases of celiac disease, and gluten sensitivity, also referred to as gluten intolerance. Both diagnoses come with the recommendation of avoiding gluten-containing foods (wheat, rye, barley), however both are different in the way the body is affected. Celiac disease, also known as gluten sensitive enteropathy, is an autoimmune disease that affects the small intestine causing it to become inflamed when gluten is digested. The immune system then generates an abnormal response to gluten and attacks its own intestinal tissue. This leads to the wasting away of the villi that line the small intestine, malabsorption of nutrients and thus malnutrition. Symptoms may include anemia, osteopenia, lactase deficiency, diarrhea, constipation, delayed growth, and weight loss due to malabsorption of nutrients. Other symptoms that may present are arthritis, dermatitis, infertility, muscle weakness, and constant fatigue. A series of tests and evaluations are performed including an examination of one’s family history as genetic predisposition is common, blood tests, and the final confirmation of an intestinal biopsy. Once confirmed a strict adherence to a gluten free diet is necessary. Non-celiac gluten sensitivity is often interchanged with gluten intolerance. There are cases where symptoms are less severe, which may be considered gluten sensitivity, whereas severe cases would be labeled as gluten intolerance due to the intensity and length of time symptoms last. Gluten sensitivity differs from celiac disease in that the body views gluten as an invader causing a direct response in the form of inflammation inside and outside of the digestive tract, and with this disorder one's own tissue (lining of small intestine) is not attacked, as we see with celiac disease. Once gluten is removed from the body, the inflammation goes away unlike the symptoms associated with celiac disease. Symptoms include bloating, abdominal discomfort, and diarrhea due to the inflammation of the digestive tract. Headaches, lethargy, attention-deficit disorder, hyperactivity, muscle weakness/disturbances and joint pain may present as well. Tests performed for a diagnosis of celiac disease are usually done with the findings not showing the indicators necessary, leading to a trial gluten-free diet. With the diet, symptoms will disappear, and a diagnosis of gluten sensitivity will be given. Unfortunately celiac disease and gluten sensitivity are becoming increasingly prevalent. Thus it is important to know how each diagnosis affects the body, and the reasons for being put on a gluten free diet. With more research being done, there may soon be more answers as to why more cases continue to emerge.
  22. Celiac.com 03/15/2016 - "Creating health comes down to the food we eat and how we choose to live our lives." – Dr. Terry Wahls Lots of people find it hard to believe that such a common food as wheat/gluten could possibly be implicated in causing skin diseases. They say something like this: "Everyone eats wheat, but not everyone gets skin troubles—so it can't be wheat!" This logic is flawed. I have written this book so that you can read all of the evidence about gluten-related skin disease in one place. "Cutaneous gluten sensitivity" is one of the new terms applied to the group of gluten-related skin diseases. Max belongs to this leg in the photo. He is very itchy and sore. He is 18-years old and not getting any better—in fact he has been getting worse. He came to me seeking help. Mum wrote, "Max has been suffering from debilitating dermatitis over his whole body for the last 3 years. He is withdrawn, self-conscious, covered with sores, and feels he will never get better. Unfortunately, the creams he is putting on just seem to irritate him." So, I am investigating him for gluten-related eczema. It will be a relief for him if the tests come out positive for gluten. What should be the strategy to get him better? I don't want him to go through the rest of his life like Elizabeth Whitesell, from the Gluten Zero Facebook page, who explains: "I was frantic with itching before my celiac diagnosis. The dermatologists never addressed the possibility of celiac, just gave me new treatments for my itching. I cannot name all of the creams, oils, pills and ointments I used, along with a blue-light treatment. Steroid shots, creams and pills were a major part of my treatment." "I received some temporary relief and never traveled without my creams. Itching on my hands was so fierce that I carried a frozen ice block (the kind used in coolers) in my purse. When we were at a public event, I gripped my hands around the ice to ward off a noisy itching attack. Ice was my godsend to keep the itching from following its neurological path. All of my blouses had blood dot stains from clawing my upper arms like I was an ape when into full-time mode." "My best treatment was freezing 2-liter bottles of water and holding them between my knees as I laid down to go to sleep. If I could fall asleep before the freaking stage began, I was on a roll. More frozen bottles were kept in a cooler by my bed for when the thaw came and I was too tired to walk downstairs to replace them." "What a saint of a husband I had. Once I went gluten-free, so many changes came for the better. I did not suddenly notice the absence of itching but, one day, looked back and realized I was not traveling and sleeping with frozen bottles anymore. I hope dermatologists are more informed now." Skin Diseases Associated with Celiac Disease Gluten is known to cause skin disease. Gluten can definitely cause itchy skin. Collectively, these skin-diseases provoked/triggered/caused by gluten can be called "cutaneous gluten sensitivity". This is an umbrella term which includes: Dermatitis Herpetiformis (DH); Celiac associated skin diseases; Non-celiac associated skin diseases. So what is the evidence? 1) Dermatitis Herpetiformis: To summarise the previous chapter, the classic skin complaint is dermatitis herpetiformis. It usually affects the elbows, knees, buttocks, scalp, and back. It begins as little bumps that then change into little blisters. People say that they are driven mad by the itching. It is caused by an immune reaction to gluten in the skin. Microscopic clumps of immune-complexes get deposited just under the skin. This creates the very itchy rash. These tiny particles of immunoglobulins can take years to clear up once you start on a gluten-free diet. It is reported that it can take up to ten years before you make a full recovery. 2) Celiac Associated Skin Diseases: Marzia Caproni and co-workers have detailed the skin diseases that have so far been associated with celiac disease (and perhaps by implication, with gluten). In their paper, "Celiac Disease and Dermatologic Manifestations: Many Skin Clues to Unfold Gluten-Sensitive Enteropathy" they include common skin complaints that most people do not associate with gluten-illness: Dermatitis Herpetiformis Psoriasis Alopecia Areata Chronic Urticaria Hereditary Angioneurotic Edema Cutaneous Vasculitis Atopic Dermatitis Eczema Vitiligo They also remind us that enamel defects, delayed eruption, recurrent aphthous ulcers, cheilitis, and atrophic glossitis are gluten-associate conditions and that "the diagnosis of celiac disease can sometimes be made from a smile!" Their important message is that anyone with any of these conditions should be investigated for celiac disease. 3) Non-celiac Associated Skin Diseases The skin is a frequent target organ in gluten-sensitivity. The skin, hair and teeth can all be disturbed by gluten. However, eczema is a much more common manifestation of gluten-sensitivity. Humbert and his dermatology colleagues (Gluten intolerance and skin diseases, 2006) wrote this about gluten and skin disease: "Gluten sensitivity, with or without celiac disease symptoms and intestinal pathology, has been suggested as a potentially treatable cause of various diseases. There have been numerous reports linking celiac disease with several skin conditions. Dermatitis herpetiformis is actually a skin manifestation of celiac disease. Autoimmune diseases, allergic diseases, psoriasis and miscellaneous diseases have also been described with gluten intolerance." "Dermatologists should be familiar with the appraisal of gluten sensitive enteropathy and should be able to search for an underlying gluten intolerance. Serological screening by means of anti-gliadin, anti-endomysial and tissue-transglutaminase antibodies should be performed. Gluten intolerance gives rise to a variety of dermatological manifestations which may benefit from a gluten-free diet." This is an important statement. In 2010, Korossy reported a skin eruption that he called "gluten-sensitive dermatitis" which he says is clinically indistinguishable from dermatitis herpetiformis but lacks the IgA connection. (Non-dermatitis herpetiformis gluten-sensitive dermatitis: a personal account of an unrecognized entity, Korossy, 2010). Cutaneous Gluten Sensitivity Bonciolini et al (2015) have made a study of the skin manifestations of people with Non-Celiac Gluten Sensitivity (NCGS) Cutaneous Manifestations of Non-Celiac Gluten Sensitivity: Clinical Histological and Immuno-pathological Features, Bonciolini et al 2015 They have adopted the term 'cutaneous gluten sensitivity'. They describe 17 consecutive patients affected by NCGS. They had excluded celiac disease and wheat allergy. They said: "The skin lesions observed were similar both to eczema and psoriasis and did not show a specific histological pattern. Furthermore, no serological marker was useful to identify these patients. The only data common to most of these patients affected by NCGS associated to non-specific skin manifestations are: the itching; the presence of C3 at the dermoepidermal junction; a rapid resolution of lesions when adopting the gluten free diet. Therefore, dermatologists must be familiar with the cutaneous manifestations and symptoms of gastrointestinal disorders. An appropriate understanding, work-up, consultation and management will help to identify the important cutaneous–gastrointestinal connection and ensuring that this important gastroenterological disease in patients with skin manifestations is not ignored. Finally, we suggest an accurate follow-up of all patients who report intense itching and gastrointestinal disorders, even when histology and morphology of the skin lesions do not identify a specific skin disease. We also suggest the adoption of gluten-free diet for at least three months assessing any positive effects." A Family Affected by Cutaneous Gluten Sensitivity Katrina Ojakaar writes this about the severe skin problems in her family that were eventually shown to be related to gluten-harm: "I had terrible eczema on my legs as a child. As an adult I had recurrent eczema on my eyelids and hands in addition to severe dry, itchy skin on my scalp, back, and legs. I also developed rosacea on my face that was treated unsuccessfully with antibiotics and topical ointments. At the age of 44, I had a lab test that showed gluten was making me sick. I immediately stopped eating food that contained gluten and within weeks watched my skin transform. I no longer have raw eczema patches or dry skin; and my rosacea has disappeared." "My daughter, Lila, had horrific diaper rash as an infant and nothing seemed to heal her sore bottom. Even as she grew out of diapers, her bottom was always irritated. Lila's skin was also very dry and irritated. Lotions and even plain bath water caused a sting. But when Lila stopped eating gluten, her skin simply healed. She now has smooth, soft, and moist skin without irritation and enjoys a relaxing bath." "My mother suffered from psoriasis on her legs and scalp until she stopped eating gluten at the age of 72. She is now 75, and the psoriasis has disappeared. Her skin is healthy, and she doesn't eat gluten, dairy, or oats." My father had rosacea on his face and was diagnosed with the autoimmune disease called lichen planus about 12 years ago. He had raw, bleeding sores on his scalp. And his fingernails and toenails disintegrated where he was left with only tender skin. Three years ago my dad stopped eating gluten, and two months later, his fingernails started to grow back. He now has a thin narrow layer of nail at the age of 80. The lesions related to his lichen planus disease on his scalp are gone. And, my father's rosacea, like mine, also healed when he stopped eating gluten." Keratosis Pilaris Keratosis pilaris, or sometimes called 'chicken skin' is blamed on gluten by many people. It is very common, occurring in about 10% of people, and there seems to be a hereditary nature to it. It tends to lessen with age, being prominent in toddlers. Any gluten connection remains speculative. Anne Luther writes: "One of the many pleasant surprises I had when I stopped eating gluten was the disappearance of three different skin rashes. There were non-itchy bumps on my back and arms, non-itchy red bumps on the soles of my feet and a very itchy rash on my legs behind my knees. None of these were ever diagnosed by a doctor but they all disappeared after I had totally eliminated gluten from my life." Keratosis pilaris is skin condition characterized by rough patches of skin caused by small, acne-like bumps. It is found mostly on the upper arms, upper thighs, and cheeks. It can feel a bit like sandpaper or goose-flesh. These little bumps are usually white, but can be red. They do not hurt. Sometimes they can feel a bit itchy. Keratosis pilaris seems to be caused by a build-up of keratin, the protein that helps create the protective skin barrier. Once keratin has formed into a hard plug at the opening of the hair follicle, this can block the oil and sweat glands. Consequently, these substances cannot escape out onto the skin, and results in these patches of rough, bumpy skin. I see a lot of keratosis pilaris in my Clinic. The gluten connection not clear, but many parents report its disappearance on a gluten-free diet. What happened to Max? Remember Max's legs at the beginning of this Chapter? Well it turned out that Max had two copies of the HLA gene DQ2 which gives him a 1-in-7 chance of developing celiac disease. It also increases his likelihood of having gluten sensitivity. However his blood tests for gluten (AGA) and celiac disease (tTG) were negative. But he did have evidence of a wheat allergy from his EAST tests. His total IgE levels were extremely high as well (over 4000), showing his heightened allergic status. So he has now embarked on a trial of a gluten-free diet. Mum says, "I feel that we are starting to get to the bottom of it now." It will be another 6 months before we know his results of his gluten-free diet. It can take a long time to heal. This was an excerpt from Dr Rodney Ford's latest eBook: "Dermatitis Eczema: Gluten Wheat – Solving the Eczema Puzzle." Available at: http://www.GlutenEczema.com
  23. I think I may have gluten sensitivity. Or Celiac disease? I don't really know. So, where to go from here? My Dr. said that I don't need to be eating gluten for my results to come back positive (I have heard the opposite). I don't think they will anyway, I'd be the unlucky person with negative results, and can they even detect a sensitivity over intolerance anyway? Supposedly, Celiac isn't in the family. Should I just stop eating it, and if I feel better, know I shouldn't eat gluten and proceed with life? Or should I find a really good allergy Dr. and go to them? I'm just worried nothing will come up, as that's the norm unless I've broken a bone, and I'm tired of feeling horrible on a daily basis. How do I know if I can still eat foods that are processed in a facility with wheat? Are all Celiacs/people with sensitivity affected? My symptoms - lifelong headaches, migraines - Daily bloating (got way worse returning after living abroad for several months) - fatigue (though I do eat well) - some brain fog/ irritability/ mood swings - depression (even though I am a happy person, happy with life) - eczema on arms - random nausea I do not have any nutrient deficiency. I don't run to the bathroom 20 times after eating bread. I've tried to clear up my issues for years now and no one can figure out what's wrong. Ps. I'm not allowing things to be stuck up me... and I'm not okay with anesthesia. Thanks for the help!
  24. Celiac.com 05/08/2015 - While it's true that all people with celiac disease are intolerant to gluten, not all people who are intolerant to gluten have celiac disease. Several studies have confirmed the existence of non-celiac gluten sensitivity (NCGS), a hypersensitivity or form of gluten intolerance that causes numerous symptoms similar to those of celiac disease. There are several key differences between celiac disease and NCGS. NCGS is distinguished from celiac disease by the following factors: No Hereditary Link Unlike celiac disease, NCGS is not hereditary, and shows no genetic component. No Connection with Celiac-related Disorders Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immumological or Serological Markers Researchers have, as yet, identified no immunologic mechanisms or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy Doctors diagnose NCGS only by excluding both celiac disease, and an IgE-mediated allergy to wheat, and by the continued presence of adverse symptoms associated with gluten consumption. Diagnosing celiac disease can be challenging. Misdiagnosis is common, and final and accurate diagnosis can take years and visits to numerous doctors. Because of these key differences, non-celiac gluten sensitivity is often even more slippery and difficult to confirm than celiac disease, itself. How about you? Do you or someone you know have celiac disease or NCGS? Share your story in our comments section below. Source: US Pharmacist. 2014;39(12):44-48.
  25. Celiac.com 02/08/2016 - When doctors talk about non-celiac gluten sensitivity (NCGS), they are usually talking about people who have gastrointestinal symptoms without enteropathy, and for whom a gluten-free diet (GFD) provides some relief of symptoms. However, doctors don't currently know very much about the pathophysiology of NCGS, its connection to neurological manifestations, or if it is in any way different from the manifestations seen in patients celiac disease. To address this issue, a team of researchers recently set out to take a closer look at the clinical and immunological characteristics of patients presenting with neurological manifestations with celiac disease and those with NCGS. The research team included Marios Hadjivassiliou, Dasappaiah G Rao, Richard A Grìnewald, Daniel P Aeschlimann, Ptolemaios G Sarrigiannis, Nigel Hoggard, Pascale Aeschlimann, Peter D Mooney and David S Sanders. The team compared clinical, neurophysiological, and imaging data from celiac disease patients and NCGS patients who presented with neurological dysfunction, and who had regular assessment and follow up over a 20-year period. The study included 562 out of total 700 patients. The team excluded patients who had no bowel biopsy to confirm celiac disease, no HLA type available, and/or failed to adhere to GFD. All patients presented with neurological dysfunction and had circulating anti-gliadin antibodies. The most common neurological problems were cerebellar ataxia, peripheral neuropathy, and encephalopathy. Out of 562 patients, 228 (41%) had evidence of enteropathy (Group 1, celiac disease) and 334 (59%) did not (Group 2, NCGS). There was a greater proportion of patients with encephalopathy in Group 1 and with a greater proportion of neuropathy in Group 2. The severity of ataxia was about the same between the two groups. Patients in Group 1 showed more severe neuropathy. Patients from both groups responded well to a gluten-free diet. Anti-tissue transglutaminase (TG2) antibodies were found in 91% of patients in Group 1 and in 29% of patients in Group 2. Researchers saw no difference between those patients in Group 2 with HLA-DQ2/DQ8 and those without, or between those with positive TG2 compared to those with negative TG2 antibodies. Both groups showed similar serological positivity for TG6 antibodies, at 67% and 60%, respectively. The results of this study show that patients with celiac disease and NCGS have similar neurological manifestations, which respond well to a gluten-free diet. This suggests that the two conditions share common pathophysiological mechanisms. Source: The American Journal of Gastroenterology , (2 February 2016). doi:10.1038/ajg.2015.434