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Celiac.com 12/05/2018 - Everyone with celiac disease has their war stories. Stories of uncomfortable of painful symptoms. Stories of tough, slow diagnosis. Of accidental gluten ingestion. Picture the worst case of celiac disease you can imagine with bad symptoms and a seemingly endless quest for a diagnosis. Now imagine you’re ten years old and that worst case is you. That’s the story of 10-year-old Lillian Bordoni, whose positive attitude is helping her to recover from the worst case of Celiac Disease that Children’s Hospital Colorado has ever seen, and inspiring even the doctors she credits with saving her life. Bordoni’s book, “Cecilia the Celiac Superhero,” tells the story of her long and complicated fight with celiac disease, and she prevailed via a diagnosis, a gluten-free diet, and eventually, a change of location. She hopes to someday share her story with others. It’s a story that starts when Lillian was around four years old and living with her family in Kansas. Lillian suffered from what were, in retrospect classic symptoms of celiac disease. However, a diagnosis remained elusive. The family saw numerous doctors until they found a doctor who tested her for celiac disease and made a formal diagnosis. Even after the whole family cut out gluten, Lillian will still unable to keep food down, and lacked the energy to play outdoors. Eventually, the Bordonis traveled to the celiac clinic at Children’s Hospital Colorado, where Dr. Edward Hoffenberg helped them to figure out that Lillian’s problems were being aggravated by the fact that the family lived “in the heart of wheat country,” said Lillian’s mom, Miriah Bordoni. “There was wheat farming all around us. There were four of the largest grain elevators within blocks of our house that were processing wheat 365 days a year.” Breathing gluten every day was not an option, so the family moved to Colorado. Ever since then, Lillian has been healthy. Her experience has inspired her to write a book about her challenges with celiac disease. Of her book, Lillian says “It’s about Cecilia which is this girl here, and she has to beat gluten and cross contamination, which I had to beat too, but I turned it into like a superhero story so that it would be fun and interesting for all kids.” Lillian is in the beginning stages of having her book published. Once that happens, Children’s Hospital Colorado will distribute copies to all newly diagnosed celiac patients. Read more.

Hello, I am brand new here. I have had blood work (while eating gluten). Followed by genetic testing (positive for both genes). Now I am on a 4 week gluten free challenge. Doc says she will then repeat my blood work and if my levels normalize she will order an endoscopy and biopsy. My question/concern is that my blood work is barely positive as follows: test: value: lab range IMMUNOGLOBULIN A 159 87-352 TTG IgA <2 U/mL 0-3 anti-gliadin antibody, IGG, serum 9 0-19 anti-gliadin antibody, IGA, serum 20 0-19 has anyone received a positive diagnosis in a situation like this? I've been gluten free for 3 days now and I already feel different. almost like every cell in my body is responding somehow.

Celiac.com 11/19/2018 - People with celiac disease cannot reliably determine whether they ate gluten or not based on symptoms, however severe those symptoms may be, according to research presented by Amanda K. Cartee, MD, of the Mayo Clinic, and her colleagues, at the American College of Gastroenterology Annual Meeting in Philadelphia. Because there is presently no FDA-approved test to confirm gluten exposure, celiac patients commonly rely on the presence or absence of gastrointestinal or other symptoms as an indicator of gluten exposure. But how reliable is that method? Not very reliable at all, says Dr. Cartee. Now, the study was small, but it was also rigorous. Dr. Cartee and her associates developed a double-blind, placebo-controlled gluten challenge to identify the rapid onset of symptoms after gluten ingestion, and to figure out if celiac patients could really tell whether they had been exposed to gluten. Researchers recruited 14 patients with celiac disease and 14 healthy controls for the trial. They then randomly assigned each patient to receive either a 6 g gluten suspension or placebo. Each patient completed a 100 mm visual analog questionnaire to assess their symptoms at baseline, every 30 minutes to 60 minutes for 6 hours and then daily for 3 days. The researchers also asked patients at each time point if they believed they received gluten. During the study, only two of the seven celiac patients who received gluten were able to correctly identify the gluten suspension. Cartee said it took a full day for one patient to come to that conclusion, while another gave varied responses sporadically throughout the study. Nausea and abdominal pain were the most common symptoms for celiac patients. Interestingly, there was no statistical difference in symptoms in the gluten celiac disease group compared with the placebo celiac disease group. That is, celiac disease patients receiving the placebo reported symptoms that the same rate as those who received actual gluten. So, not only could the celiac patients not tell when they got gluten, they also couldn’t tell when they got a placebo. Dr. Cartee said because physical symptoms are subjective and non-specific, they are largely unreliable for self-diagnosing gluten exposure. Dr. Cartee is calling for the development of a better, more objective way to identify gluten-related symptoms, especially in celiac patients with ongoing gastrointestinal symptoms. Do you have celiac disease? Would you welcome an easy reliable way to determine gluten exposure? How would you find it helpful? Source: Healio

Celiac.com 12/03/2018 - Biomarkers in blood samples are not effective indicators for diagnosis or monitoring of celiac disease. A team of researchers recently set out to assess biomarkers of celiac disease derived from neoepitopes of deamidated gliadin peptides (DGP) and tTG fragments, and to assess their usefulness in identifying patients with celiac disease with mucosal healing. The research team included RS Choung, SK Rostamkolaei, JM Ju, EV Marietta, CT Van Dyke, JJ Rajasekaran, V Jayaraman, T Wang, K Bei, KE Rajasekaran, K Krishna, HK Krishnamurthy, and JA Murray. They are variously affiliated with the Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN, USA; Vibrant Sciences LLC, San Carlos, CA, USA; and with the Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN, USA. The team began by analyzing serum samples from 90 patients with biopsy-proven celiac disease, along with 79 healthy control subjects for immune reactivity against the tTG-DGP complex. They used a fluorescent peptide microarray platform to estimate the antibody binding intensity of each synthesized tTG-DGP epitope. They validated results in 82 patients with newly diagnosed celiac disease, and in 217 control subjects. They assessed the ability of the peptide panel to spot patients with mucosal healing based on histologic results and using serum samples from 85 patients with treated and healed celiac disease; 81 patients with treated but unhealed celiac disease who showed villous atrophy despite adhering to a gluten-free diet; 82 patients with untreated celiac disease; 27 disease control subjects who showed villous atrophy without celiac disease; and 217 healthy control subjects. To assess their data, they relied on principal component analysis followed by machine learning and support vector machine modeling. In all, the team found 172 immunogenic epitopes of the tTG-DGP complex. Compared with control subjects, celiac patients showed substantially higher immune reactivity against these epitopes. In the test group, neoepitopes derived from the tTG-DGP complex identified people with celiac disease with a remarkable 99% sensitivity and 100% specificity. Blood samples from untreated celiac patients showed the greatest average antibody-binding intensity against the tTG-DGP complex. Blood from patients with treated but unhealed CeD mucosa (15.1 ± 7.5) showed significantly higher average antibody-binding intensity than blood from patients with treated and healed CeD mucosa (5.5±3.4) (P<.001). The test spotted celiac patients with healing mucosa with 84% sensitivity and 95% specificity. The research team discovered immunogenic epitopes of the tTG-DGP complex, and found that a test that measures immune response to epitopes accurately identified both celiac patients and patients with mucosal healing. From this study, the team concludes that the biomarker method for celiac testing could be useful in both the detection and monitoring of celiac disease. Read more at: Gastroenterology.

Celiac.com 01/11/2006 - For many years, biopsy of the small bowel demonstrating villous atrophy has been fundamental to the diagnosis of celiac disease. Older celiacs will remember, fondly or otherwise, the Crosby suction biopsy device which was swallowed attached to a long tube and made its way down to the small bowel where, position confirmed by x-rays, it guillotined a small portion of tissue. The procedure was tedious and technical failures common—only identified when the device was hauled up after several hours. Later it became clear that biopsies from the duodenum obtained during endoscopy were just as good, and the biopsy process became a five minute job with no need for X-rays. Nevertheless, many celiacs are reluctant to undergo biopsy and its necessity is increasingly questioned, particularly now that blood tests for celiac-related antibodies are highly sensitive and specific. There are a number of reasons why, in my own practice, biopsies continue to be helpful in celiacs diagnosed in adulthood. Biopsies are necessary when blood tests are negative. While endomysial (EmA) and tissue transglutaminase (TTGA) antibodies are detectable in most cases where villous atrophy is present, 5-10% of patients lack these antibodies1. In this situation, where the story is suggestive of celiac, perhaps with a family history or strongly suggestive symptoms, biopsy is the only way to make the diagnosis. Increasingly, physicians recognize that many patients with gluten sensitivity do not have villous atrophy (Grade III of the Marsh classification) of "classic" celiac disease, but have milder abnormalities such as crypt hyperplasia (Marsh II) or an excess of the inflammatory cells called lymphocytes (Marsh I). Patients in these categories are less likely to have positive serology2. Biopsies are necessary where false positive blood tests may occur. TTGA, particularly where levels are low, may be associated with diseases other than celiac: ulcerative colitis, Crohns disease, arthritis and liver diseases without any evidence of celiac disease have been linked3. Newer TTGA tests have steadily improved in this regard but I still would be reluctant to diagnose celiac on a TTGA test alone. "False positive" EmA is a different issue which I will return to. Biopsies give a baseline for comparison. Suppose a patient starts a gluten-free diet without biopsy—we dont know whether she or he had Marsh I, II or III or even normal histology. A year later, same patient develops new symptoms of diarrhea, weight loss, whatever. Well get a duodenal biopsy as part of the workup, but its going to be difficult to interpret without knowing what things were like before going gluten-free. Specifically, a baseline to look back at tells us whether the small bowel is better, worse or no different, and helps us decide whether we need to focus on celiac disease as the most likely cause of new problems or explore other possibilities involving the rest of the gut. The biggest diagnostic disaster of all, of course, is the gluten-free diet started without any sort of baseline investigation including antibodies, raising the specter of the infamous gluten challenge if a definitive diagnosis is needed. Biopsies provide a "gold standard" assessment of the state of the bowel. There has been much excitement recently about capsule endoscopy, a wireless device the size of a large pill (not to be confused with the Crosby capsule!) which makes its own way down the small bowel taking pictures as it goes. Characteristic abnormalities can be seen in celiac disease, raising the possibility that this device might be useful in diagnosis. If experience with conventional endoscopes is any guide, however, these abnormalities are missing in a sizeable minority of celiacs particularly with mild disease4 (Capsule endoscopy in its present state of development can not take biopsies). Certainly the capsule allows assessment of the bowel beyond the reach of conventional "anaconda-style" endoscopes, but I am not convinced at present that it can replace biopsy. A follow-up biopsy gives an indicator of progress. I offer my patients a repeat biopsy after two years gluten-free and perhaps surprisingly most take up the offer and are keen to hear how things have improved. Ive increased the biopsy interval from one to two years because only 40% of people had complete recovery after 12 months gluten-free5. EmA and TTGA disappearance is only a marker of how successful gluten exclusion has been and is not a reliable indicator of bowel recovery. Does persisting villous atrophy matter if the patient is doing well on a gluten-free diet? Intuitively, one might like to keep a closer eye on the patient with persistently flat biopsies, who could be at greater risk of complications in the future6. The endoscopy not only allows examination and biopsy of the duodenum but also a look at the esophagus and stomach. Sad fact of the ageing process is that you start to collect diseases like trading cards, and just because youre celiac doesnt mean you cant have something else. Its important to have a good look for bleeding lesions in the upper gut even if the blood work for a seventy year old with anemia says celiac (and check out the colon too, but thats a topic for another day). On the other hand, we recognize that biopsies are not always the final arbiter in diagnosis. While the jury is still out on what a TTGA positive, biopsy negative result means with regard to gluten sensitivity, there is plenty of evidence that a positive EmA generally does mean that biopsy abnormalities will follow: My own follow-up of EmA positive, biopsy negative patients indicates that they will develop abnormal histology if not treated7. So it makes sense to start EmA positive people on gluten-free without waiting for significant bowel damage—and as already stated, even a normal baseline biopsy will provide a reference for any problems that might arise in the future. Sometimes I meet a patient with bad gut symptoms but completely normal blood work up and biopsies and when all else fails I will run a trial of gluten-free. It often works, particularly if there is a family history of celiac. But then again, if it doesnt, we have a baseline normal biopsy to say there is no need to persevere. I guess in the future diagnosis of gluten sensitivity will rely on totting up various factors, none individually essential: blood tests, biopsies, family history, genetic testing for the HLA celiac genes. Some researchers are making a case for dropping the biopsy requirement if the antibody blood work checks out in children8, for whom (and for the parents) endoscopy and biopsy is a major issue. In adults however it is quick, straightforward and safe and will remain a key part of my celiac workup. William Dickey is a gastroenterologist at Altnagelvin Hospital, Londonderry, Northern Ireland, with over 400 celiac patients attending his clinics. His interest in celiac disease goes back some fourteen years and he has published extensively on the subject. He is an associate member of Coeliac UKs Medical Advisory Council. References: Dickey W, McMillan SA, Hughes DF. Sensitivity of serum tissue transglutaminase antibodies for endomysial antibody positive and negative coeliac disease. Scand J Gastroenterol 2001; 36: 511-4. Wahab PJ, Crusius JBA, Meijer JWR, Mulder CJJ. Gluten challenge in borderline gluten-sensitive enteropathy. Am J Gastroenterol 2001; 96: 1464-69. Di Tola M, Sabbatella L, Anania MC, Viscido A, Caprilli R, Pica R, Paoluzi P, Picarelli A. Anti-tissue transglutaminase antibodies in inflammatory bowel disease: new evidence. Clin Chem Lab Med. 2004;42(10):1092-7. Oxentenko AS, Grisolano SW, Murray JA, Burgart LJ, Dierkhising RA, Alexander JA. The insensitivity of endoscopic markers in celiac disease. Am J Gastroenterol. 2002 Apr;97(4):933-8. Dickey W, Hughes DF, McMillan SA. Disappearance of endomysial antibodies in treated celiac disease does not indicate histological recovery. Am J Gastroenterol 2000; 95: 712-4. Meijer JWR, Wahab PJ, Mulder CJJ. Histologic follow-up of people with celiac disease on a gluten-free diet: slow and incomplete recovery. Am J Clin Pathol 118(3):459-63, 2002 Sep. Dickey W, Hughes DF, McMillan SA. Patients with serum IgA endomysial antibodies and intact duodenal villi: clinical characteristics and management options. Scand J Gastroenterol 2005: in press Barker CC, Mitton C, Jevon G, Mock T.Can tissue transglutaminase antibody titers replace small-bowel biopsy to diagnose celiac disease in select pediatric populations? Pediatrics. 2005 May;115(5):1341-6

Celiac.com 09/26/2018 - Non-celiac gluten sensitivity (NCGS) is a clinical syndrome marked by both intestinal and extra-intestinal symptoms that respond to the elimination of gluten-containing food and the adoption of a gluten-free diet. A team of researchers recently set out to review the diagnostic challenges surrounding non-celiac gluten sensitivity, and to summarize recent advances in research and provide a brief overview of the history of the condition for the benefit of professionals working in gastroenterology. The research team included Giovanni Casella, Vincenzo Villanacci, Camillo Di Bella, Gabrio Bassotti, Justine Bold, and Kamran Rostami. They are variously affiliated with General Practioner National Health Italy; the Institute of Pathology Spedali Civili Brescia Italy; the Pathology Department, Carate Brianza Hospital, ASST-Vimercate (Monza Brianza), Italy; the Gastroenterology and Hepatology Section of the Department of Medicine at the University of Perugia School of Medicine in Perugia, Italy; the Department of Gastroenterology Milton Keynes University Hospital, Milton Keynes, UK; and with Allied Health and Social Sciences, University of Worcester, UK. The researchers searched academic databases such as PubMed and Google Scholar using key words like ”non-celiac gluten sensitivity,” “gluten related disorders,” and the studies outlined in reference page were selected and analyzed. Clinical opinion generally holds that NCGS is best diagnosed by ruling out celiac disease and wheat allergy. Currently there is no blood test that can pinpoint NCGS. The underlying causes of symptoms in NCGS patients is poorly understood. However, there have been a few recent insights. Professional estimates of NCGS rates currently vary between 0.6 and 6%. Gastrointestinal symptoms of NCGS overlap slightly with those of irritable bowel syndrome. Researchers are currently investigating the histologic characteristics of NCGS, which range from normal histology to slightly elevated rates of T lymphocytes in the superficial epithelium of villi. Positive response to gluten free diet for up to 6 weeks, followed by a recurrence of symptoms after a gluten challenge, is still the best confirmation of NCGS. The Salerno expert criteria may help to accurately diagnose NCGS, especially in research settings, but isn’t particularly useful for diagnosis in clinical practice. Source: Gastroenterol Hepatol Bed Bench 2018;11(3):197-202).

Celiac.com 07/03/2018 - The vast majority of celiac disease remain undiagnosed, and clinical testing is usually done on a case by case basis. Factor in vague or atypical symptoms, and you have a recipe for delayed diagnosis and unnecessary suffering. What determines who gets tested, and are current screening methods working? A team of researchers recently set out to assess the factors that determine diagnostic testing, along with the frequency of clinical testing in patients with undiagnosed celiac disease. The research team included I. A. Hujoel, C. T. Van Dyke, T. Brantner, J. Larson, K. S. King, A. Sharma J. A. Murray, and A. Rubio‐Tapia. They are variously affiliated with the Division of Biomedical Statistics and Informatics, the Division of Internal Medicine, at the Division of Gastroenterology and Hepatology at the Mayo Clinic in Rochester, Minnesota. For their case‐control study the team identified 408 cases of undiagnosed celiac disease from a group of 47,557 adults with no prior diagnosis of celiac disease. Their team identified undiagnosed cases through sequential serology, and selected unaffected age‐ and gender‐matched controls. They made a comprehensive review of medical records for indications for and evidence of clinical testing. Over time, people with undiagnosed celiac disease were more likely than control subjects to present with symptoms or conditions that invite testing. This study makes a strong case that current clinical methods are ineffective in detecting undiagnosed celiac disease. Accordingly, the researchers urge the development and adoption of more effective methods for detecting celiac disease. Source: Alimentary Pharmacology & Therapeutics.

Celiac.com 07/05/2018 - We’ve known for a while that dental enamel defects can be an indicator of celiac disease. Now, a new study has evaluated the pathological conditions of the stomatognathic system observed in celiac patients on a gluten-free diet, and found that non-specific tooth wear can be seen nearly 20% of celiac patients, while such wear is seen in just under 6% of non-celiac control subjects. The data come from a team of researchers that recently set out to evaluate the pathological conditions of the stomatognathic system observed in celiac patients on a gluten-free diet. The research team included Massimo Amato, Fabiana Zingone, Mario Caggiano Orcid, Paola Iovino, Cristina Bucci and Carolina Ciacci. They are variously affiliated with the Department of Medicine, Surgery and Dentistry, Medical School of Salerno in Salerno, Italy. For their study, the team consecutively recruited celiac patients on a gluten-free diet, along with healthy control volunteers, from the team’s celiac clinic. Two dentists examined all patients and controls and examined them for mouth disorders. The study included forty-nine patients with celiac disease, and 51 healthy volunteer subjects. The team found recurrent aphthous stomatitis in 26 patients (53.0%) and in 13 (25.5%) controls. They found dental enamel disorders in 7 patients (14.3%) and in 0 controls (p = 0.002), with no cases of geographic tongue. They found non-specific tooth wear, characterized by loss of the mineralized tissue of the teeth, in 9 patients (18.3%) and in 3 (5.9%) controls. From this data, the team notes that recurrent aphthous stomatitis and enamel hypoplasia are “risk indicators” that indicate the possible presence of celiac disease. Among patients with celiac disease, the team found high rates of non-specific tooth wear that can be caused by several factors such as malocclusion, sleep bruxism, parafunctional activity, and age. This study, and previous studies on dental enamel defects, confirms that non-specific tooth wear and enamel defects can be strong indications of celiac disease, and may lead to a more active role for dentists in helping to spot and diagnose celiac disease. Source: mdpi.com

Celiac.com 07/02/2018 - We know from earlier studies that diagnosed celiac disease is more common in women than in men, but there isn’t much good data on sex-based differences in undiagnosed celiac disease. To address this discrepancy, Claire L. Jansson-Knodell, MD, and her colleagues at the Mayo Clinic, in Rochester, Minnesota, conducted a meta-analysis of studies that performed both a screening and confirmatory test that included either a second serological study or a small intestine biopsy, and that that provided clear and complete data regarding sex. According to data they presented at Digestive Disease Week 2018 in Washington, D.C., women are significantly more likely than men to have undiagnosed celiac disease, and the numbers are even higher for younger girls. In all, the researchers found 88 studies that met their inclusion criteria. These studies included data on nearly 300,000 patients. When they got done crunching the numbers, the research team demonstrated for the first time that women also had a higher rate of undetected celiac disease than men. When the team analyzed data from one subgroup focused on children, they found that rates of undiagnosed celiac disease were even higher in girls compared with boys. Timely diagnosis of celiac disease is important for preventing unnecessary suffering, and potential damage and disease associated with untreated celiac disease. In one recent case, a doctors found that a woman's psychotic delusions were caused by undiagnosed celiac disease and an adverse reaction to continued gluten exposure. Her condition improved quickly once she began a gluten-free diet. The research team says that their findings could change approaches to clinical screening, diagnosis and management of celiac disease. They also suggest that physicians might do well to increase their suspicion levels for celiac disease when evaluation women and girls. Source: Helio.com

Celiac.com 06/27/2018 - Data shows that since celiac blood screening came into use, people with celiac disease are living longer, and dying of things not-related to celiac disease. With screening tests for celiac disease becoming more common, researchers suspected that milder cases of celiac disease coming to diagnosis might bring a reduced risk of mortality for celiac patients. However, there was no consensus for that opinion, so researchers Geoffrey K T Holmes and Andrew Muirhead of the Royal Derby Hospital, and the Department of Public Health for the Derby City Council, Derby, UK., recently set out to re-examine the issue in a larger number of patients for a further 8 years. For their study, the researchers prospectively followed celiac disease patients from Southern Derbyshire, UK, from 1978 to 2014, and included those diagnosed by biopsy and serology. For each patient, the researchers determined cause of death, and calculated standardized mortality ratios for all deaths, cardiovascular disease, malignancy, accidents and suicides, respiratory and digestive disease. To avoid ascertainment bias, they focused analysis on the post-diagnosis period that included follow-up time beginning 2 years from the date of celiac disease diagnosis. They stratified patients by date of diagnosis to reflect increasing use of serological methods. Total all-cause mortality increase was 57%, while overall mortality declined during the celiac blood test era. Mortality from cardiovascular disease, specifically, decreased significantly over time, which means that fewer people with celiac disease were dying from heart attacks. Death from respiratory disease significantly increased in the post-diagnosis period, which indicates that people are living long enough to have lung problems. The standardized mortality ratio for non-Hodgkin’s lymphoma was 6.32, for pneumonia 2.58, for oesophageal cancer 2.80 and for liver disease 3.10. Overall, celiac blood tests have lowered the risk of mortality in celiac disease. The number of celiac patients dying after diagnosis decreased by three times over the past three decades. Basically, people with celiac disease are living longer, and dying of things unrelated to celiac disease, which is good news. The researchers see this data as an opportunity to improve celiac disease survival rates further by promoting pneumonia vaccination programs, and more swift, aggressive treatments for celiac patients with liver disease. Source: BMJ Open Gastroenterology

TMI BUT COULD IT BE CELIAC? About a year ago randomly one night that my bottom started itching around my butthole and since then it would itch every night there after some nights more severe some not as bad but still itchy. It never itched during the day only at night. Few months of dealing with it I finally went to see a hemorrhoid doctor thinking that could be it. I ended up not having any hemorrhoids. I then tried every cream there was from hemorrhoid creams, diaper rash ointment, coconut oil and even a hydrocortisone cream prescription and none helped. I looked online and saw that night time only itching could be that I had pinworms. I tried over the counter pinworm medication twice and still that didn't help either. I then went to another doctor and all she said was she didn't see anything so she didn't know what it could be. I thought about a month or two ago what if I was allergic to something could that be causing my night time bottom only itching? I tried cutting down on dairy and that helped somewhat but then the itching came back. I read about celiac and was wondering if I could have celiac disease? Could celiac be the cause of my night time itching or do you usually itch all day if you have celiac disease?

If anyone could clear this up for me it would be really helpful. My primary care doctor wasn’t able to get me in for months and my insurance isn’t very good so I found a lab online to do blood work. i only did the gluten allergy IGg blood test. I got my results online today and I don’t understand them fully. From what it says I’m ‘in range’ but my range is exactly what the range number is. Therefor is it higher than average just not high enough to be out of range? This is the results I have. In range <2.0 Reference range <2.0 mcg/mL so technically I’m not over the range but there’s nothing to reference, as in do most people that aren’t gluten sensitive have a 0? Because I feel awful most days with serious brain fog, anxiety and depression and massive headaches that never go away and stomach cramps and I can’t see what else could be causing this. I already had an ultrasound from my gynecologist and I don’t have anything visably wrong on the ultra sound causing the stomach cramping. Any insight would be helpful since I can’t get a doctor to fully interpret this. Thank you!!

Hi everyone. Has anyone ever heard of a doctor ordering an endoscopy biopsy before doing a blood test? When I asked my GP for a celiac test she sent me straight to a GI doctor without doing any blood tests. The GI asked about all my symptoms and I litterally handed him the list (in addition to describing some of it). He immediately ordered an endoscopy with biopsies and a colonoscopy. After he left the room I realized he didn't mention blood work so I asked his nurse to ask him about it. She came back saying he said he would do it after. I'm actually fine with that because I've read horror stories of people with negative blood tests not being diagnosed for years. But I'm curious as to why he would choose to do it in that order. I can't find any stories or articles showing the biopsy preceding the blood test. Is it possible he saw all my symptoms and decided not to beat around the bush and just go for it? With that in mind, I had the endo and colonoscopy today (no turning back now). If the biopsies show celiac, will there be any reason for the blood test? Thanks, Kat

Why You Should Listen to Your Girlfriends (AKA “I Told You Something Was Wrong With Me”) Nearly five years of health-related nonsense left me depressed, anxious, over-tired, over-weight, and feeling defeated. Until I shared a glass (or two) with my girlfriends and they insisted that I not give up. I didn’t. And that’s how I finally found out what was actually wrong. It was one of those four thousand snowy days in New Jersey, where the kids were off from school for the second day in a row and I was getting some serious cabin fever. The roads were still a mess and too icy to go anywhere, but I needed company. “Cabin Fever Cocktails?” I texted my neighborhood girlfriends, all in walking distance of my front door. “OMG YES” they texted back, and at 5 p.m. on the dot, my winter emotional rescue team walked in. My grandmother used to have a cake in the kitchen for anyone who might stop by and share a cup of coffee. I, apparently, always have bubblies on hand, and we popped open a couple bottles and sat around with our feet tucked and caught up with life. Maybe it was the cozy fire, maybe it was too much self-reflection after 48 hours of being cooped up, maybe it was just the vibe of the room of supportive and caring people, but I finally confessed to my (skinny, fit and fabulous) friends how frustrated I was that I was having such a hard time losing weight, and feeling crummy in general. Weight has been an up and down thing for me my whole life. Puberty and middle school was an awesome time of growing sideways first, then sprouting taller and leaner. College freshman fifteen, up, down. Pregnancy did not make me a baby-bump glowing human – I gained just as much weight in my butt as I did in my belly. I used to say it was nature’s way of making sure I wouldn’t tip over. Baby weight on, baby weight off. Up. Down. By the time the pounds had started creeping on in my late thirties, I blamed age and a lack of time to exercise, and decided to make some lifestyle changes, really try and take care of myself once and for all. Then I tried some fun anti-anxiety meds, which packed on 50 pounds in six months. I wasn’t anxious - because I was a zombie. I stopped the meds but couldn’t get rid of the pounds. For the last two years I had been really trying, seriously trying, to little avail. “I just feel like I’m stuck – like if the answer really is that it’s just that hard to lose weight when you’re older I get it, but this is ridiculous,” I told the ladies. “What have you been doing?” they asked, wanting to listen, wanting to understand, the way good girlfriends do. I explained how I had joined a gym in the fall, and had been seeing a trainer three times a week for an hour at a time, and was on the Peloton bike one or two times in addition to that. I explained how I had joined a meal delivery service and was eating 1300 calories a day. How I read an article that said sleep was important for weight loss so I was maniacal about sleep health and sleep hygiene and was getting eight hours a night and had started using essential oils so I would have better sleep and despite all of this, I hadn’t seen a difference on the scale. “Something’s wrong.” “That’s not normal.” “You’re working too hard for there not to be success.” “WTF?” I’d never been so glad to have other people tell me there was something wrong with me. That’s how I’d been feeling too. A couple of years of raised eyebrows, and a serious six months of WTF? They asked me more questions. Was I seriously not sweating sitting so close to the fire? Nope. I was usually chilly. My feet were always cold. I wore socks to bed every night. I had rosacea that started in the fall as well – my whole life I’d always had great skin and now this was a new awful WTF thing. They asked about my poop, periods, pimples, all the good things that good girlfriends want to know. “That’s too many things. I think it’s auto-immune,” Marni said. Amy agreed. “Could be thyroid. You know that stuff runs in threes too, right? You could have a bunch of things going on at the same time.” Mandy nodded. “Your body is acting like it’s starving to death, it’s holding on to every ounce of fat it can.” “You’re working so hard, there should be results with all that work!” Chris exclaimed. “Go see my doctor,” said Kristen, “he’s a functional medicine doctor. He’s like a detective. He doesn’t take insurance but he’s worth it.” And then we drank some more champagne and complained about our kids and families and parents and spouses and dogs. And I felt so much better, because of all of it. I decided to go see my primary doctor again. She’s a general practioner, and I’ve always liked her. Plus, she takes insurance, so for $25 maybe I could get her to order me a blood test to check my thyroid and I could find out what was wrong and get a magic thyroid pill and be skinny. Right, skinny and healthy. But really what I was focused on was wanting to be skinny again instead of feeling like I was trapped in a fat suit. Dr. M saw me the next day. She came in and was friendly and curious why I was there. I’m either super healthy, or super not healthy. I won’t need to talk to a doctor for three years and then I’ll get bronchitis and cough and break a rib. Or get bitten by a neighbor’s dog that leaves teeth marks around my arm and requires a tetanus booster, just to be safe. You know, fun stuff like that. I explained why I was there. How frustrated I was that I wasn’t losing weight, and that I’d been anxious and depressed and exhausted and generally having a hard time. “What are you eating?” she asked. And I explained about the meal delivery plan and how I’d been following it for six months and wasn’t having success. “Are you really only eating 1300 calories a day?” Dr. M asked me. “Well, mostly,” I said. “If I get really hungry I might eat an apple or some almonds,” I confessed. Dr. M nodded. “Yup. That’s your problem. An apple is too much. You should never eat a whole apple. A THIRD of an apple. That’s a snack,” she told me. “Look at me,” she said, and I did. She might be four foot eleven and I doubt she weighs triple digits. She’s super cute and super little. “I eat nothing – that’s how I stay looking like this.” I bit my tongue. I think my skeleton (or left boob) might weigh more than her full corporal form. “Do you really think that a whole apple instead of a third of an apple is my problem though? My girlfriends suggested I might have a thyroid issue?” She started writing out a blood work form. “We can test you for thyroid. You only need Free T4, I don’t need to test you for T3.” I tried to remember what Amy had said about the full panel of thyroid testing, but I was feeling fat and badly about my existence and all of a sudden lost my ability to ask questions or advocate for myself. In the six minutes Dr. M had spent with me in the exam room I went from thinking about my written list of symptoms to wondering if I could survive on a third of a piece of fruit. She handed me the lab form. “If you want to talk to me about a gastric sleeve we can have that conversation. I’m not against that,” and she walked out of the room. Wait, What? A gastric sleeve? WTF?? OMG. Was everyone looking at me and thinking “Jesus, she needs to get her stomach stapled, what is her problem?” and I was thinking I was fat, but like in a just a little fat kind of way? I thought about my half-hearted joke that I needed fatter friends, like Chubby Checkers, how I went to Disney World and felt skinny and was so glad I wasn’t on a jazzy scooter. Was I one giant turkey leg and a big gulp away from needing electric transport to roll my fat ass through life? I had my blood drawn at the lime green lab of lost souls down the hall and walked outside. I called my sister from the car. “I need to ask you something and I need you to be completely honest with me. Because if you are lying to me you are not helping me and I need the truth from you right now,” I started out, not even saying hello. “Okay…..” she said. “I can do that.” “Do I need gastric bypass? Are you all looking at me and talking about how morbidly obese I am and not telling me? Because I just saw my doctor…” and I spilled my guts on the whole thing. My sister was furious. “If you tell me where she lives, I will egg her house,” she said. “She didn’t listen to you. She isn’t trying to help you. She’s blaming you. This is not what you need. Go to another doctor.” So I did. I called Kristen’s doctor who didn’t take insurance. I had my first test results from Dr. M by the time I went to see him. Thyroid T4 or whatever was normal. No further follow up requested. I wondered if there were giant GMO apples I could buy. I told Dr. Z “I was on the phone with my sister this morning on my way here and she was glad I was coming to talk to you. She said she didn’t want to sound mean but that I’m kind of a bit of a mess right now.” Dr. Z smiled. “What does your sister want me to know about you?” And I went through my story again. Dr. Z listened and asked questions. For an HOUR. We talked about how I’m tired ALL THE TIME. We talked about my weight gain and inability to lose pounds, my restrictive calories, working out with a trainer (who also said I should see a doctor and get my blood checked, because even SHE thought I should be more successful than was my reality), we talked about my depression, anxiety, rosacea skin, my tendency to complain and then make jokes, my blog, my kids, my dogs, my parents and my childhood, my vitamins, my husband and marriage, and how I love to travel. After an hour, Dr. Z asked if he could do an exam, and then we talked again. We did a fasting blood draw and he explained that the last test I had wasn’t “as complete” as what he would be ordering. “I can’t tell you much right now,” he said, “we’ll need to see what’s going on with the blood work, but I think something is definitely out of balance. We’ll get you back on that path where you want to be.” Dr. Z emailed me the blood work results a couple weeks later. The first test packet came from my typical lab of despair and had a bunch of the usual stuff, some I recognized. Others I did not. I did recognize that my once-perfect cholesterol was no longer perfect. I sent my mom a text thanking her for our crummy family DNA. I am snarky that way. Thankfully my mom puts up with me. Then I read the second test packet, something called a “Custom NutriQuant Panel” and read the first item, Arsenic. It was high, like out of range high. I called my sister. Obviously I was being poisoned by my husband and someone needed to know, so when I wound up dead the police would be pointed in the right direction. “I don’t think that’s how he’d kill you,” my sister told me. “I think he’d find something more modern. Arsenic is so old-fashioned. Unless he’s a time traveler, I don’t think that’s it.” My sister can be so logical. She didn’t argue that my husband wouldn’t kill me. She just thought he would find a more efficient and modern way to do it. “What’s the rest of the test say?” she asked. “I don’t know.” I said. “There’s stuff all over the place. I’m supposed to call the doctor.” “And you called me instead?” my sister asked. “Cool. Go call the doctor.” So I called Dr. Z. “Which page do you have in front of you?” he asked. “Arsenic!” I declared. “I already told my sister my husband is trying to kill me,” I explained to him. “Mm, well that might be true, but, I wouldn’t worry too much about the arsenic. It could be that you eat a lot of rice or had some fish with some higher arsenic levels. It’s not worth worrying about that but we can retest it again just to check if that would make you feel better.” I sniffed. I was glad everyone was taking my husband potentially poisoning me seriously. We talked about my Vitamin B12 being low, my Vitamin D being low, even a weird level for Copper was low. I didn’t even know the body needed Copper. Was I going to turn green like the Statue of Liberty? “I’m so confused,” I said. “I take a multi vitamin every day with 1667% of Vitamin B12. And for Vitamin D I take 4000IU every morning. How on earth am I still so low?” And Dr. Z told me. “All of these things are probably testing low because your body isn’t able to absorb them. If you turn the page you’ll see you tested positive for Celiacs. You’re malnourished in several areas.” W.T.F. Celiacs? Malnourished? This was a cosmic joke. Why couldn’t I get skinny person Celiacs? How on earth did I get fat from being malnourished? I had been so fixated on my arsenic poisoning that I hadn’t bothered to look up most of the other stuff on the test. I had been tested for Celiacs ten years ago when my daughter was first diagnosed with it. I was negative then. I was positive now. Was the test ten years ago wrong? Apparently the negative tests are only correct 71% of the time. Or had the Celiacs just turned on at some point in the last few years? I have no way of knowing. Part of fun and funky thing about autoimmune diseases like Celiacs is that they can activate at any point in life. Katie and I had zero similarities in terms of symptoms. She was nearly two when she was diagnosed, and her pediatrician suggested that we test her because Katie had fallen off the growth chart. She was tiny, hovering near that “failure to thrive” mark. Within 6 months of a gluten-free diet, Katie was growing and thriving and her blood work was back to perfect. All the blood testing helped lay the foundation for her fear of needles, but that’s another story. My symptoms were different, but apparently not atypical at all. The unfortunate thing is that most doctors think of a “celiac look”, and test people who are really skinny and little. But, according to research, a full 39% of celiac patients are overweight, with 30% actually obese. Malnourished vitamin and mineral-deprived bodies become super efficient at holding on to excess fat. They can get a gastric sleeve, eat a third of an apple a day, and their body will still recognize malnourishment as starvation. I’m convinced that undiagnosed Celiacs is part of the obesity problem in America. Yes, there are some facts and studies that support that. Mostly I just think these things in my own head and have little actual medical knowledge, but I’m totally ok with that. At the end of the day, I will miss good New York / Northern New Jersey bagels, croissants and crusty bread in Paris, and Carvel ice cream crunchies. But I will not miss my body attacking itself, holding onto excess weight, and feeling exhausted all the time because I can’t maintain needed vitamin and mineral levels. I want my body back in balance, and I want to feel good again. Is a celiacs diagnosis going to cure all my life problems? Maybe. Maybe not. I still have that whole arsenic poisoning thing to obsess about. I’m really good at obsessing in general. Thankfully my girlfriends listened to my troubles and pushed me in the right direction. What we all need is to make sure we are speaking up and pushing for ourselves too. Onwards. ******* Are you like me? Do you think you have every disease you read about? Here’s some info on Celiacs disease, the extensive blood work you might want to consider, and the link to a great card set called “Fifty Things that Might Kill You”. Because why not? Facts, Figures, and Fantastical Ideas: What the heck is gluten? A protein found in Wheat, Oats, Rye, Malt and Barley. Not the kind of good energy protein you find in eggs and meat and things. Just some weird science protein that makes everyone confused. Technically oats do not have gluten in them, but most farmers growing oats rotate the crop with wheat, and the gluten leaches out into the soil, and then when you plant the oats the gluten gets absorbed into the oats. You can find gluten-free oats in the store because those farmers are following gluten-free farming practices. Tuck that away for your trivia night evening. Celiacs Disease is not an allergy. It’s an auto-immune disease. Essentially it’s your body reacting to the presence of gluten in a way that creates an attack on your own self. Your intestines have these cute little villi that are like little fingers or tentacles reaching out to absorb nutrients. In Celiacs, the gluten makes the body think it’s under attack and the immune system kills off the villi. So no more nutrient absorption, and the body becomes malnourished. That’s what the blood test looks for – antibodies in your blood which indicates your immune system is in attack formation. There are three separate tests you need to diagnose celiac (and yes, you need all three, not just one) – Tissue Transglutam AB IGA, Gliadin Deamidated AB, IGA, and Gliadin Deamidated AB, IGG. You see why I didn’t notice I had Celiacs. None of those say Celiacs. Arsenic is way more fun to talk about. Celiacs can make people react in so many different ways that there isn’t really a “typical” symptoms list that would make you want to go get tested. I just think every human should be tested anyway. Like a CBC, cholesterol check. Just do it. A healthy gut is too important not to take care of. Did you know that 80% of your immune system is in your gut? So if your gut is sick then you’re just going to feel rotten. Maybe we’re not all sleep deprived because of long commutes and screen time. Maybe we all have celiacs. Maybe celiacs is the magic answer for everything. I wonder if Harry Potter has a spell for that? “Reparo My Gut!” In Italy, they simply test every child at age 5. That’s your baseline. And then you can get tested again later to see if you have a change. Or if you’re already Celiac as a kid you know to make changes (a strict gluten-free diet) and you get healthy early in life. I also think this Custom NutriQuant Panel was wicked important. We can all take vitamins, but how do we know if our body is absorbing them if we aren’t checking? Think about this. I was taking 1667% of Vitamin B12 thru my multivitamin EVERY DAY. And it was going right thru my body like it was water. While my body is repairing I’m taking B12 as a dissolvable tablet under my tongue so it goes directly into my blood stream instead of needing to be absorbed through my gut. Cuz apparently my gut isn’t working all that well. It can take six months for my body to heal while doing this whole gluten free diet thing. As little as one eighth of a teaspoon can be enough to set an immune system into attack mode. There’s no cheating. Or mistakes. Which makes this part really fun: Food companies do not need to indicate if their product has gluten in it. The allergy people are much better organized with the lobbyists on this front. The eight major allergens (fish, shellfish, peanuts, treenuts, eggs, milk, soy, wheat) are required to be listed on packaging. Gluten can be hidden in the ingredients – in things like “natural and artificial flavoring” - and when I have called company customer service hotlines (places like Dannon yogurt) to ask them if there is any hidden gluten I was told “the ingredients are proprietary information” (and I never bought a Dannon product again). Yes, there is a ton of gluten free options in the grocery store. Some of them actually taste good. Most are in the meh category. Gluten can hide in things like soy sauce, rice krispies (because malt flavoring is cheaper than sugar), toothpaste, medications, and envelope glue. Remember that episode of Seinfeld where Susan died from licking envelopes? Again, celiacs might be the answer to all the world’s problems. Celiacs is not something you grow out of. It’s a disease you have forever (until they find a cure). The only way to live a healthy life is to be completely 100% gluten free all the time. With all the choices of other things I could have, I’ll take this one, thank you very much.

Hello all, So, long story short, in 2011 I started getting really really sick, with no discernible cause. Violent vomiting daily, rapid weight gain (40 pounds in one month) unbelievable exhaustion, depression, social anxiety to the point of not being able to leave the house, hives, acne, rashes, brain fog, and my LEAST favorite, the all-over bruised body feeling you get when you have the flu (that horrible bone deep aching that makes it uncomfortable to move at all, and any clothing touching you hurts.) Oh, and monstrous swelling of my face and stomach. I wound up figuring out through elimination of certain things in my diet that what was doing it was gluten and dairy. So, over the years I've cut them out (at first, after I cut them out, I was still getting horrendously sick, just less often and it took me too long to realize CROSS CONTAMINATION WAS A THING) So fast forward to now, I'm able to function like a human again by being INCREDIBLY strict with my diet and making almost all of my food myself and NEVER taking any chances with anything that was "processed in the same facility with..." etc etc I've also recently started going back to school, which means I have to be EXTRA careful, or I won't be able to attend classes or study because my brain, and my body just don't function when I've been exposed. However, I've always been a do it yourself girl, so after having endoscopies and colonoscopies years ago, and having a doctor tell me I had "acid reflux" (way to diagnose the symptom, not the cause, ya jerk) and having no doctors know why I was getting so sick, and eventually figuring it out myself, I never was tested for Celiac's Disease. So obviously, I'm scarred for life, and terrified to death of gluten and I was wondering; does anyone know of some way that I could be tested for it WITHOUT exposing myself to it? Thank you so much in advance

Hello all - please forgive me if this has been discussed before, as I'm having trouble finding existing info in the forum. I am planning a trip to the Columbia University Celiac Disease Center ASAP, based on a recommendation from a family with a Celiac child in my area. I've been gluten/casein free for nearly 5 years now and I'm looking for a diagnosis, as well as some information and direction on other health risks and any risks to my new baby (8 months and currently eating gluten free because I am). I have at least one relative that's in the same boat - gluten-free for years but undiagnosed. Nobody in my area is knowledgeable about Celiac, and I'm not getting the information I need. https://celiacdiseasecenter.columbia.edu/about-the-center/celiac-disease-center-team My question, for those of you that have been there (adults) - Between Drs. Liebwohl, Krishnareddy, and Lewis, which doctor have you seen? What did you think? Who would you recommend, and why? Thanks everyone, Sarah

I was speaking with someone, and thinking this could be very helpful for newly diagnosed people. Especially if it's for your child. To figure out what is OK in your kitchen, how to read labels at the supermarket, how to eat at restaurants, kid's parties, schools, travel, etc. I hope the poll works - curious to see what people think. Thanks!!

I went gluten-free about ten years ago and was amazed by how my body improved almost immediately. There were things that had become so normal for me I didn't realise they were "symptoms" of anything at all until they disappeared including tingly/numb fingers and toes, fatigue, bouts of anaemia, elbow/groin/knee/hand rashes, constant coldsores, bloatedness, pale stools/mucus and a general unhealthy pallor which I assumed was smoking related (I've also long given up smoking by the way, just in case anyone's tempted to have a wee prod at that ). They're mostly cumulative symptoms, I seldom had an immediate wild gastrointestinal response to anything at all (except dairy), and pretty much all of them disappeared upon ditching gluten. Upon this miraculous discovery I went to my doctor and told him. His exact words were "So you're telling me you've stopped eating a particular food and now you feel much better. What do you imagine I'll tell you to do?" Implying that I should just keep on avoiding that food and not waste his time. I felt very very silly. So I just continued with gluten-free diet and all was fine. After about two years I wondered if I'd best check if it really is celiac disease, having become veeeery familiar with the the inconvenience (I hate the idea of being the awkward dinner guest or companion for no real medically substantiated reason.) So I had a blood test done and a biopsy done and both came back negative, although admittedly I had only eaten gluten for about two weeks before biopsy. So again I felt silly and stopped mentioning it, generally being gluten-free but not creating a fuss with sauces in restaurants or at friends houses. And maybe the odd beer at a party when the wine's run out at 1 am... And generally my health has been good, but I guess on hindsight never eating enough gluten to build up any cumulative reaction. And now again I find myself deep in the throes of my original symptoms (toilet stuff, mouth and cheeks and hand covered in coldsores, arm pit rashes, tiredness) and after a couple of bewildered weeks discover that oats are the most likely culprit. I've been going wild on porridge as part of a new regime of physical exercise and had no idea that this was a potential allergen. And it again brings me to the celiac door more convinced than ever. My question is, what is the use of me getting a diagnosis given that my symptoms are so textbook? I definitely cannot be bothered eating bread for 12 weeks, life's too short to feel terrible. Ugh, sorry this is so boring. I really want to file diet so much lower on my list of things to think about which I'm sure everyone here gets as much if not more than I!

Hi everyone, Back story: I was diagnosed with a borderline wheat allergy as a toddler, but the same allergist told my mother that spelt and Kamut (types of wheat) were ok to feed me. So, I have no idea how reputable that doctor was, and I’ve been eating wheat most of my life. I’ve got tons of issues because of it, and recently went to a gastroenterologist familiar with celiac to see if I needed to worry about complications developing or anything like that. He said I needed to do the gluten challenge and serology testing to find out whether I have Celiac, or gluten sensitivity with some other condition, before he could move forward. After much deliberation, I decided to do the gluten challenge, and I am currently two weeks in. I am miserable, worried it’s affecting my job stability, and struggling to get through my days. The doctor told me I could do the gluten challenge for a minimum of two weeks, but that I should really do it for a month if I can. I can’t. I’m going to try and get through a third week and then give up. Question: The doctor’s nurse told me to go in for the blood test 4 weeks after I stop the gluten challenge. I can’t find anything about waiting any length of time between the challenge and the serology. Does anyone have experience with this or know anything about that waiting period? Thanks for your time, Cassandra

I’ve been having gastro issues from almost 15 years now, initially I was referred to a psychologist because my gp at the time thought I was making it up and that it was all in my head. I was around 10/11 then. Was given aspirin to take every morning before school.. that was my GPS solution back then. Then I was hospitalised for a recurring infection numerous times (not related .. maybe it was) and was given IV antibiotic therapy on all those occasions. That’s when the problems really began to get more worse than they had been prior to this. Had stool and bloods checked for infections with everything negative. Even had a celiac blood panel done then and a colonoscopy back in 2011- they couldn’t carry the full procedure out because it was too painful for me (I was kept awake) so they never got the opportunity to properly take a look. Fast forward to around 2014 and I had only what I can describe as a flare up- chronically so! In 2014 was when things got REALLY bad, I came down with unexplained Loose stools, intense stomach pain (like knives being twisted) it was so bad that I was in bed for a week, doctor ran stool tests and they detected microscopic traces of blood.. he then tested for h. Pylori (3 times) and they all came back negative, so he just put it down to gastritis. Since then i have these types of flare ups most months. He offered no more help and so I decided to cut out gluten for the second time since 2011.. it was successful, my bloating pretty much vanished, I started having normal bowel movements my skin was immaculate and cramping was non existent- I also lost about a stone just by cutting out the gluten. Then I went to my GP and my local nurse and both told me to start eating gluten foods again - because I wasn’t celiac so I had no good reason to cut it out and could cause deficiency. However prior to me cutting gluten out, I had tested shockingly low in b12, vitamin D and was close to becoming anemic. As soon as I cut the gluten out all those blood levels started to gradually restore themselves months after cutting gluten out.. Anyway since then I’ve been on and off of gluten consumption just because I still feel further investigation and ruling out of celiac would be beneficial. But now the situation is far worse than I ever imagined. The pain is almost unbearable, I also have suspected ulcers, (but have began to notice a pattern- the pain and heartburn is at its worst when i've ingested gluten containing foods) and I have also started to have pale and floating stools in the past 6-9 months which is a new development for me. i have previously been diagnosed with ibs ( imho ibs is a blanket term for symptoms that can’t be explained properly) In the past five years i’ve Also started to develop a blistering kind of rash, that has flared up on my knee caps, thighs, arms and I think now on my scalp. The abdominal bloating has me mistaken for someone who is 5 months pregnant which is depressing to say the least. My skin is drier than the Sahara desert- which is odd because I’ve never had problems with dry skin. Chronic migraines are something which affect me every other week at this point, and I have been suffering with PCOS (I have heard infertility can sometimes be linked to celiac) since I can remember. Might I add the only time my menstrual cycle has ever resembled something normal is when I cut out gluten for a long amount of time… I’m writing this history because I imagine there are loads of people who are fed up and frustrated with being passed from doctor to specialist with no real solution, but remaining pain! Pain which is affecting how you live your life. I want to know if anyone out there has gotten to the point where they can no longer carry on eating gluten to wait for more damage to be done - even though specialists require that you do gluten challenges to do things like bloods and biopsies…? How important is the biopsy in 2018, as I have heard biopsies only reach so far down into the small intestine to look for villi atrophy… so what if it’s missed and they tell you it isn’t actually celiac when it is…? Sorry for the essay… just waiting for an appointment in June to see yet another gastro and I know they’ll make me eat gluten so they can do a biopsy. Whether or not they find anything i don’t know. And quite frankly the idea of a biopsy terrifies me because of failed and traumatic past attempts. ( I have ASD so medical procedures and environments scare me to the core) Even at the time of writing this I feel like its probably all in my head because i've had so many GP's tell me it's nothing and Im probably imagining it. But the pain and inability to live a normal life now seems very real to me. I almost feel like a fraud for sharing my story with you all. I’m so desperate now that I’m trying to fund 6k to see a private doctor in the hope she’ll be able to speed up this process. It would be nice to just feel healthy again. Would appreciate it if anyone out there could share their long frustrating journey to diagnosis official or not!

Celiac.com 03/08/2018 - A team of researchers recently set out to study delays in diagnosing patients who have biopsy-proven celiac disease with gastrointestinal complaints, compared to those without non-gastrointestinal complaints. The research team included Marco A. Paez, MD, Anna Maria Gramelspacher, MD, James Sinacore, PhD, Laura Winterfield, MD, and Mukund Venu, MD. They are variously affiliated with the Division of Gastroenterology, Department of Medicine, Howard College of Medicine, Washington, DC; the Department of Medicine, the Department of Public Health Sciences, the Division of Gastroenterology, and the Department of Medicine at Loyola University Medical Center in Maywood, Illinois. The research team first conducted a medical chart review of 687 adult patients diagnosed with celiac disease. All patients they studied had biopsy-proven celiac disease and were grouped according to presence or absence of gastrointestinal symptoms before diagnosis. The team found 101 biopsy-proven celiac patients that met their study criteria. The groups were roughly equal in size, with 52 patients showing gastrointestinal symptoms before diagnosis, and 49 with no gastrointestinal symptoms. The results for the groups were starkly different. Statistical analysis revealed an average diagnosis delay of 2.3 months for the group with gastrointestinal symptoms, while the group that showed no symptoms showed an average delay of 42 months. That’s a difference of nearly 3½ years. Nearly half of the patients with non-gastrointestinal symptoms had abnormal thyroid-stimulating hormone, as opposed to 15.5% in the gastrointestinal symptom group (P = .004). Nearly 70% of patients without gastrointestinal symptoms had anemia, compared with just 11.5% of the group with gastrointestinal symptoms. Also, nearly 70% of patients in the non-gastrointestinal symptom group showed abnormal bone density scans, compared with 41% in the gastrointestinal symptom group. The team saw no sex differences on chi-squared analysis between the 2 groups. Although there is growing awareness of celiac disease, the delay in diagnosis for patients without gastrointestinal symptoms remains prolonged, with an average delay of 3.5 years for celiac diagnosis, compared with just over two months for those with symptoms. Clearly, more needs to be done with regard to diagnosing celiac disease in patients who show no symptoms. On the upside, researchers are currently working on ways to better diagnose celiac disease via faster, more accurate tests, even in patients who have already gone gluten-free. Source: PlumX Metrics

Hey guys!!! I am in NYC and have had drs tell me “Oh you don’t have celiac. It’s really hard to maintain a gluten free diet.” Oh, well. OK then I’ll decide not have it! WTF! I’ve been gluten-free for 11-12 years. For financial reasons, I kinda wanted to have a diagnosis, but I was freaked out about going back on gluten. In the past yr, I’ve had SEVERE stomach pain unlike anything I had before I went gluten-free. A doctor scoped me and I had a buncha stomach ulcers. They cleared up a little but my stomach is constantly affected by gastritis which won’t go away. So I’m on Omeprazole, Rantitidine (or whatever) and Sucralfate pretty much all the time now. This whole situation may be exacerbated by my bipolar medications. I finally did the 23andme genetic test and the markers were there indicating increased risk for celiac including some pretty seious ones. It’s the DQ8 plus some other weirder ones. Anyway, I thought it said no there was no chance when I looked at it but I was still really freaked out to go back “on” gluten again. Then I found out one of the pastas I got at this super amazing store hereafter referred to as the Gluten Free Promised Land was not gluten free. They had so many gluten-free pastas I just didn’t look as closely as I might - it was Sfoglini “Hemp Radiators”. I was wondering why it was so good! And I wasn’t getting sick. Then I looked at the ingredients and saw wheat and looked at the box and realised it didn’t say gluten-free anywhere on it - I just was tricked by it being Hemp. So, freaked out totally, I tried a sandwich and got no reaction. So then I just started eating whatever I wanted which was amazing! But then I looked at my 23andme result again and saw that it wasn’t negative but that the markers were there. I mean, I still have stomach problems beyond the gluten thing so it’s hard to say what my current upset stomach is all about. But then I thought well I can do this for a month or two and then go get the biopsy again. One of my celiac friends who’s a total celiac nerd and I were talking and we thought maybe it was possible that maybe my villii was so far healed up after 11 yrs that I wasn’t getting sick. Yet. This is my 8th day of eating gluten (and kinda a lot of it cause let’s face it, tat s&*t is yummy! Looking online, I was unable to find anyone who had gone back on gluten after such a long period of time. I saw a few ppl who were on gluten-free diet for like 2 years and got totally sick right way after eating gluten. But nothing in excess of 2 years about. I’d ask the guy I went to for the ulcers who is supposedly some sort of “celiac expert” according to Zocdoc, but the dude told me if I had like a donut a couple days before an endoscopy then that would be sufficient to see the results in the biopsy. After I refused to go back on gluten for the test, he scoped me and said I “definitely don’t have celiac” based on a stomach lining that’s been 11yrs on a gluten free diet. So.....I’m not feeling the trust here. Hopefully there are ppl on this list who are totally nerding out on the current research and can offer up an opinion - seeing as how the drs are 100% toally and thoroughly useless, even in NYC - is it possible that my villi just aren’t damaged enough to be sick yet and as we go along it’ll get bad? Cause I’m not sure I want to destroy my health just to get a diagnosis when I might be able to keep looking and find a dr that can diagnose based on the genetic tests and the fact that a gluten-free diet helped. And do you guys think it’s reasonable to maybe be able to find a doctor that will be willing to do that? Thanks, guys. Love this site.

Hi, im just wondering how long you all waited for your results for endoscopy biopsy? I rang the lab today and apparently they have already been sent to my gp! That seems really quick to me! Also what were your symptoms? i went gluten free about 10 years ago. Was having stomach issues. Did every test but the endoscopy (I chickened out). Fast forward stomach issues returned. So return for a bunch of tests. Got diagnosed with Hashimotos. So Doc recommended confirming celiac. Gluten challenged. Omg that really sucked! Crippling pain, tired all the time. Toilet drama, I looked pregnant, so much so that people actually asked! So bloated! Gong to Gp tomorrow...

I've recently been to my GP 3 times in the last 2 weeks. It started with a rash on my side that was diagnosed as shingles. About 5 days later, a different extremely itchy rash developed on my thighs, buttocks, lower back and biceps. Small red and raised, but would become hive like once inflamed. I went back to the GP one more time where they prescribed prednisone until I could see the dermatologist (tomorrow). I've never even considered this being celiac as I don't have any digestive issues outside of diarrhea after lunch which I've always attributed to coffee consumption. Just trying to gauge the possibility for celiac going into tomorrow's tests. Thanks

Hey there, I'm new! I've spent quite some time on this site reading up and thought I'd ask the experts. In end of November I started experiencing symptoms (toilet and gas focus) which in January really started escalating enough to send me to the doctor. I explained my symptoms and got a blood test and results about 10 days ago. My 'Deamidated Gliadin IgA was high at 31 U/mL (normal being <15) while the other results were all normal. Doc told me to go to GI for endoscopy, although stated this isn't a 'huge' increase. Meanwhile my symptoms started escalating to the occasional vomit, massive fatigue and feeling like I would collapse while walking to work. I'm reading a lot about this now (though still don't feel knowledgeable at all), and I'm wondering 1) does this number give any indication of celiac as a stand alone? No family history. 2) Is it possible that if it could be celiac, that it can happen so quickly? It just seems to be so sudden so I'm quite confused. I'm seeing the GI next week for next steps. It's just been a tough couple of weeks and I don't seem to get much help from the GP. Any tips would be appreciated!