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Found 1,859 results

  1. Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things. To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat. They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD. The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. Source: Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023
  2. celieacresearch

    Celiac Research

    Do you or someone you know have Celiac Disease? Do you or someone you know have a Gluten Intolerance or Sensitivity? We Want to Hear Your Story! We are two cultural anthropology students from Linfield College conducting research on Celiac disease and how it affects the lives of those who have it. Cultural anthropologists aim to learn about human lives within their society and how different variables affect them. Celiac disease is one of those variables. Your story is what we’re looking for and everyone has something to tell. If you are interested in participating, email Rose or Carmen at celiacresearch24@gmail.com or reply to this post for more details or to set up an interview time and date.
  3. Sorry for the long post, I've been dealing with this forever and want to figure it out! Hi, I just got tested for celiac (blood test at a family practice (USA)) without knowing that I had to have been eating gluten regularly for it to show anything. I read forums here that said so, so I called the doctor's office before my test to ask if that was true, and they put me on with a nurse that said "I've never heard of that, but let me check the test we have....Oh, yep, it says to eat gluten. So just eat some bread before you come today." Seemed doubtful. I ended up NOT eating any gluten, and I've been actively avoiding wheat for at least 3 years (I noticed a gluten intolerance when I started college, my dad and uncle and 2 cousins can't eat it either). I was accidentally glutened with the tiniest bit of fajita seasoning from a restaurant 3 weeks prior to my blood test, but that's it. I didn't want to make myself sick with bread after reading that the blood test really only works if you've been eating it for weeks/months, so I went and got tested with basically non gluten in my system at all. The test itself said "negative." But I've attached a screenshot of my levels. After talking with the nurses on the phone twice, I'm convinced they know nothing about it. My antibodies were low/normal, probably because I haven't eaten gluten in years. (I sometimes drink beer made with barley instead of wheat because it doesn't give me horrible stomach cramps, but I hadn't had any in probably a month). The one thing that seemed "high" to me for someone who hasn't eaten wheat in years was the tTG IGA (I have no idea what that means). Mine said 7.2 U/mL (again, whatever that means). This family practice test says that a normal level is under 15 U/mL, but all my other levels are less than 1. After some research, I came across what "normal" levels should look like and Mayo Clinic suggested under 4.0 U/mL is negative for celiac (Source) [4.0-10 is a "weak positive"]. Like I said, I'm not very trusting that the practice I went to knows anything about celiac. I know if I want a diagnosis I should go to some specialist. But I really don't want to get put under just to be told "yep, do exactly what you've doing for years, avoiding gluten." So, I decided to sort of "self-diagnose" myself with celiac JUST to make myself be extra careful, you know, just in case my intestines are damaged whenever I get cross-contaminated food. My question is: does anyone else think it's possible I have celiac? Or am I being nuts? Recap & Symptoms: In 2014 I could barely eat anything in my house because I would be sick with horrible stomach cramps and constipation that would make me cry and have to stay home the next day. I lost weight then. Someone suggested going gluten-free, and I knew my dad was doing that because he had a couple passing-out episodes and similar gut pain. My uncle (dad's brother) also has a sever intolerance to gluten, like it gets him hospitalized because of malnutrition and cramping (I'm pretty sure he has celiac, but he's too stubborn to get tested). I tried avoiding gluten for a week and felt way better. Now I've been gluten free for years. Like I said before, though, I am not careful with barley and rye. Malt hurts me a lot, and when I take one bite of, say, a donut thinking it'll be worth it (I miss donuts..) it NEVER is. I'm out for two days after that. If I get glutened, I experience: fatigue, horrible cramps, gas (that won't pass), constipation (for days), foggy head, itchy skin, irritability, and my appetite fluctuates like crazy-- one minute I'm so full I can't think of food, another I'm starving.
  4. Hi all, This is my first post here. I'm a college student and I have to eat most meals on the go, I'm also a nanny and have no choice but to cook and eat in a mixed kitchen for work. I also live in a home with HEAVY gluten eaters. It is not financially viable at this point in my life for me to buy my own pots and pans, utensils, etc. I have two main parts to my problem: 1. It is so overwhelming to be gluten free when I eat most of my meals on a college campus where they don't pay any mind to if the food is being cross contaminated. I try to bring lunch and snacks, but I am out for 15-18 hours a day and forget or get hungry and need to buy additional food while I'm out. What are some meal prep tips y'all can give me? How can I ensure these meals stay gluten free when I'm stuck living in a home with a mixed kitchen? I don't have a dishwasher, so even washing the dishes makes me nervous. I'm trying to learn how to cook but my anxiety over gluten is at the point where I don't even want to be around the kitchen. 2. I've been gluten free for a year now, since my diagnosis with both celiac and hashimoto's disease. I'm VERY sensitive to cross contamination. I work at this so hard, I'm hyper vigilant, I annoy restaurant employees asking them to change utensils and wipe surfaces and change gloves, I annoy everyone in my home about cleaning up between prep, I obsessively read labels. I feel like being gluten free is a full time job, and I STILL get severely glutened regularly. It has happened twice just this week, and I get so sick every time. What else am I supposed to do? How much hidden gluten is there? On this one, I really could just use some support and maybe quick tips on how to keep this from feeling so difficult. Thank you so much in advance. This whole thing is so difficult. I'm young and want to be able to enjoy meals out with friends, cook for the kids I watch, eat on campus, enjoy my life, and just to not be sick half the time.
  5. Hi all, I'm new to the forum so I'm really hoping someone will be able to help. I've been having digestive issues for the past 2 years and have lost nearly 4 stone in weight. All of my symptoms suggest celiac disease, I not only have digestive issues, bloating ect but my upper arms are covered in a rash, obviously the weight loss and then I'm also constantly anaemia and I now have low vitamin D levels along with depresssion, anxiety, constant headaches, tiredness, stomach pain ect. I know these symptoms could suggest a number of issues but I have noticed once I've stopped eating gluten products my symptoms seem to at least lessen. I've asked the doctor what he suggests and he does think it is likely but i'm struggling to be put forward for further testing. I'va had countless generic blood tests but obviously this isn't enough to diagnose if I have it or not. I'm honestly losing my mind with not only feeling so ill but also not knowing what exactly is wrong with me. Should I just try a gluten free diet and see if my symptoms continue to improve or what?
  6. Celiac.com 05/28/2018 - Myasthenia gravis is a medical condition caused by a disturbance in the communication between nerves and muscles. Symptoms include weakness of arm or leg muscles, double vision, drooping eyelids, and difficulties with speech, chewing, swallowing and breathing. There is no cure for myasthenia gravis, but treatment can help symptoms to improve. Some case reports have indicated a connection between celiac disease and myasthenia gravis (MG). A team of researchers recently set out to determine if those reports are accurate, and, if so, what the connection might be between celiac disease and risk for myasthenia gravis. The research team included Sujata P. Thawani, Thomas H. Brannagan, Benjamin Lebwohl, Peter H. R. Green, and Jonas F. Ludvigsson. They are variously affiliated with the Department of Neurology, New York University School of Medicine, New York, NY USA; the Peripheral Neuropathy Center, Neurological Institute, Columbia University, College of Physicians and Surgeons, New York, NY USA; the Celiac Disease Center, Department of Medicine, Columbia University College of Physicians and Surgeons, New York, NY USA; the Department Medical Epidemiology and Biostatistics, Karolinska Institutet, 171 77 Stockholm, Sweden; the Department of Pediatrics, Örebro University Hospital, Örebro University, Örebro, Sweden; and with the Division of Epidemiology and Public Health, School of Medicine, University of Nottingham, Nottingham, UK. The team found 29,086 people who had celiac disease in Sweden between 1969 to 2008. The team then compared these individuals with 144,480 matched control subjects. They used Cox regression to estimate hazard ratios (HRs) for future MG, as identified through ICD codes. Their study period covered 326,376 person-years of follow-up in celiac patients. Over that period, they found 7 cases of MG, for a total of 21 cases per million person-years. In the control group, the team found 22 cases of MG over 1,642,273 years of follow-up, for a total of 14 cases per million person-years, which yielded an HR of 1.48 (95% CI = 0.64–3.41). The HRs did not change when stratifying for age, sex or calendar period. HRs were highest in the first year after follow-up, though insignificant. Individuals with celiac disease showed no increased MG risk for more than 5 years after celiac diagnosis (HR = 0.70; 95% CI = 0.16–3.09). Fortunately, this study showed no increased risk for myasthenia gravis in celiac disease patients. Source: BMC Neurol. 2018; 18: 28.Published online 2018 Mar 12. doi:  10.1186/s12883-018-1035-2
  7. I’m the parent of a nearly 15 year old daughter. 5 years ago we finally found something that made a difference in her pain. A natural doctor did a blood test showing her to be severely gluten intolerant. Regretfully, we did not know to test her for celiac before removing gluten from her diet. Without that diagnosis, many doctors have made us feel gluten intolerance isn’t that serious. Very long story. Anyway, after 5 years of strict gluten avoidance, we were on vacation and let our guard down. Served what we thought was rice, she ate a portion. It ended up being ORZO. Pasta that looks like rice. That night she was dizzy, faint, even developed a fever. She slept most of the next day not eating much at all thinking she was coming down with a cold. Then, severe stomach pain and headache. Then, she threw up everything she ate for a few days. Ready to take her to the ER, we realized it was gluten! Picked up some digestive enzymes, anti-nausea medications, ginger, peppermint, tea, you name it. Today was the first day she could eat proper in a week. Still having some discomfort. Joint pain starting now too. My main question is: Is this typical for just gluten intolerance or does it sound more like celiac? She has been severely vitamin d deficient taking as much as 10,000 iu a day in liquid D and never bringing her levels to normal and menstral cycle never regular although she started at 10. Goes for months without and then when it does come, crazy heavy lasting weeks. Doctor still wasn’t horribly concerned. Just exhausted trying to be our own doctor. Insurance constantly changing making us look for new doctors. I wish I was rich. So expensive and frustrating having to try to get enough bedside time with each new doctor to reexplain her whole journey. Any information appreciated. She was doing much better by strictly avoiding gluten all these years but this last episode has me researching again to do what I can. Again, what do you think? My gut says “Celiac” but I guess we might not ever know for sure.
  8. My entire life I've been dealing with what I now know is reactive hypoglycemia. I vividly remember eating a ton in the morning because I was scared of getting "woozy" and not having snacks prepared during elementary school. I also remember nearly passing out several times in P.E. class just two hours after lunch. Over the years I've managed it by having snacks and protein with each meal, but it's been getting more difficult as I've gotten older. My mom has the same thing and she gets woozy pretty often. She said her mother dealt with it, too. I thought this could be something related to diabetes, but after I posted on a diabetes forum, I had someone ask if I had been tested for gluten intolerance or thought about it. So, I'm bringing my symptoms here to see if any of this sounds like an intolerance. I am so tired of having digestive problems and I don't know what to do. Here are my other symptoms: *I have dealt with anorexia since I was 13 (currently 18), but I've been doing well for this past year, so new foods/normal amounts of food/eating out really shouldn't be bothering my stomach this much anymore. I've never experienced a regular period since I started starving myself soon after I first got it. When I was recovered the first time, before a relapse, I had a couple of irregular periods. Since my second recovery, I STILL have not regained my period. It has been over a year and my nutritionist seemed stumped. I have since stopped seeing her and am eating quite normally and freely as I used to and have gained weight recently just to see if that could help. Still nothing. In the mornings I'm usually very full, kind of nauseous, hot, and thirsty. I feel sick after eating a lot, or even "normal" amounts when I go out with friends. I have stomach cramps/sharp pains, extreme gas all day and everyday, suuuuuper bloated all the time, reflux, nausea, sometimes constipation, fatigue, my finger and toes often tingle, mouth ulcers, headaches...when I was younger I had "chicken skin" on the backs of my arms, which has since gone away. I also am diagnosed with anxiety. There's honestly more symptoms but I can't list them all. To sum it up, my stomach is upset all the time and I am always bloated no matter how long ago I ate/how nutritionally dense the food was. *forgot to mention, I'm also lactose intolerant, just like my mom. Any feedback is greatly appreciated.
  9. Celiac.com 11/23/2015 - A new study looks at the impacts of introducing gluten to infants and the development of celiac disease. A research team recently set out to assess the evidence regarding the effect of time of gluten introduction and breastfeeding on the risk of developing celiac disease. The research team included MI Pinto-Sánchez, EF Verdu, E Liu, P Bercik, PH Green, JA Murray, S Guandalini, and P Moayyedi. Their team conducted a comprehensive review of studies from the following electronic databases: Cochrane Central Register of Controlled Trials (CENTRAL); MEDLINE (Ovid); EMBASE (Ovid); and System for Information on Grey Literature in Europe (SIGLE). Two independent authors collected the data. Their analysis included randomized controlled trials and observational studies that assessed proper timing for introducing gluten to the infant diet, appropriate quantity of gluten consumption at weaning, and the effect of breastfeeding on celiac disease risk. Out of a total of 1982 studies they identified, 15 matched their criteria for data extraction. The team performed a meta-analysis on 2 randomized controlled trials, 10 cohort studies, and 1 case-control study. That analysis showed a 25% increase in celiac disease risk with gluten-introduction after 6 months, compared to the recommended 4 to 6 months (risk ratio [RR], 1.25; 95% CI, 1.08-1.45). There was no difference between breastfeeding vs no breastfeeding on celiac disease risk (OR, 0.55; 95% CI, 0.28-1.10), with substantial heterogeneity (I2 = 92%) among studies. There is currently no evidence to support that early introduction of gluten to the infant diet increases the risk of celiac disease. However, introduction of gluten after six months of age might promote an increased risk of celiac disease. More studies are needed that control for potential confounders and that evaluate environmental factors in low-risk families. Source: J Pediatr. 2015 Oct 20. pii: S0022-3476(15)01045-8. doi: 10.1016/j.jpeds.2015.09.032.
  10. 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?
  11. A week ago Johnny Rockets mistakenly served us regular gluten buns, not thinking of the miscoloring, I ate it. I had EXTREME gas pain, bowel movements and blood the night after and have been suffering through tons of blood when having a bowel movement ever since. Tonight though.. I had the weirdest looking poop like seperated in weird ways and I don’t know if it should be a concern? I’m sorry for any graphic images but I need to know asap!
  12. Celiac.com 06/01/2018 - Sharon Stone is gluten-free and glamorous. Even at 59, the veteran screen star manages to look great and keep landing new work. Stone is in the news recently, promoting her work in two new projects. Stone currently stars in Steven Soderbergh’s innovative murder mystery “Mosaic,” which began as an app and evolved into a full-blown HBO mini-series. She also stars in the romantic comedy “All I Wish,” which premiered at the end of March. A recent article in the New York Times details Stone’s picks for makeup, hair and beauty products, along with some tips on diet and fitness. Among her diet tips, the seasoned star shares the fact that she has celiac disease, so she eats gluten-free. She also avoids processed food, caffeine, and rarely drinks soda or alcohol. For more on Sharon Stone, including her beauty and health routines, check out other recent articles.
  13. Celiac.com 02/29/2016 - Previous studies have shown that oat proteins trigger an adverse anti-33-mer monoclonal antibody reaction that is proportional to the immune responses in terms of T-cell proliferation. Although there has been some research regarding the impact of these varieties on the adaptive response, researchers still don't know very much about the role of the dendritic cells. A research team recently set out to characterize different oat fractions and to study their effect on dendritic cells from celiac patients. The research team included Isabel Comino, David Bernardo, Emmanuelle Bancel, María de Lourdes Moreno, Borja Sánchez, Francisco Barro, Tanja Šuligoj, Paul J. Ciclitira, Ángel Cebolla, Stella C. Knight, Gérard Branlard and Carolina Sousa. They are variously affiliated with the Departamento de Microbiología y Parasitología, Facultad de Farmacia, Universidad de Sevilla, Sevilla, Spain; the Gastroenterology Unit, Antigen Presentation Research Group, Imperial College London & St Mark′s Hospital, Harrow, United Kingdom; the Hospital Universitario de La Princesa and Instituto de Investigación Sanitaria Princesa (IIS-IP), Centro de Investigación Biomédica en Red de Enfermedades Hepáticas y Digestivas (CIBEREHD), Madrid, Spain; the INRA UMR-1095, Clermont-Ferrand, France; the Nutrition and Bromatology Group, Department of Analytical and Food Chemistry, Food Science and Technology Faculty, University of Vigo-Ourense Campus, Ourense, Spain; the Instituto de Agricultura Sostenible (CSIC), Córdoba, Spain; the Division of Diabetes and Nutritional Sciences, King's College London, Gastroenterology, The Rayne Institute, St Thomas' Hospital, London, United Kingdom; and the Biomedal S.L., Sevilla, Spain. The team first isolated protein fragments from oat grains and then analyzed them using SDS–PAGE. They then characterized several proteins in the prolamin fraction using immunological and proteomic tools, as well as Nano-LC-MS/MS. These proteins were very similar to α- and γ-gliadin, and showed reactive sequences to anti-33-mer antibody, indicating their potential for causing adverse immune reactions. Furthermore, the team found that some of the newly identified oat peptides triggered a range of immune responses on circulating dendritic cells from celiac patients, as compared with healthy controls. This is the first study to show that newly identified oat peptides can trigger a range of stimulatory responses on circulating dendritic cells from celiac patients, which highlights the potential of these oat peptides to trigger adverse immune responses in people with celiac disease. Source: Food & Nutrition Research eISSN 1654-661X
  14. Celiac.com 04/29/2010 - May is designated as National Celiac Awareness Month. As such, I thought it would be a great opportunity to explore the history of celiac disease. Most people think of celiac disease as a modern day ailment, which predominantly affects those of European descent and in Westernized societies. However in my research, I found that the best place to start when referencing the history of celiac disease, is actually the beginning of humans. In the beginning of humans, known as the Neolithic Period, humans were hunters and gatherers and primarily survived on fruits, nuts, and meat when available. During the Neolithic Period, humans evolved and began cultivating plants which quickly led to the agricultural revolution. With the agricultural revolution came a myriad of food antigens, such as dairy, eggs and processed grains. It was during this time that celiac disease was born. Some 8,000 years after making its debut, celiac was identified and named by a Greek physician known as Aretaeus of Cappadocia. In the first century A.D., Aretaeus documented information about, “The Coeliac Affection.” He named celiac disease, “koiliakos” derived from the Greek word for “abdomen”. In his descriptions of celiac Aretaeus stated, “If the stomach be irretentive of food and if it pass through undigested and crude, and nothing ascends into the body, we call such persons coeliacs”. While a name had been given to the disease, people with celiac still had no idea how to heal from the condition, and were still vastly unaware of the cause for their ailments. It wasn't until the early 19th Century that Dr. Mathew Baillie published his observations on celiac disease which he sited as, 'chronic diarrheal disorder causing malnutrition and characterized by a gas-distended abdomen'. In his observations, Dr. Baillie documented that some of his patients appeared to benefit from eating only rice. However important Dr. Baillie's findings were, they still went largely unnoticed by the medical community until 75 years later when an English doctor known as Dr. Samuel Gee, came into the scene. In 1888 Dr. Gee was working for the Great Ormond Street Hospital for Children in the United Kingdom when he demonstrated a set of clinical trials performed on children and adults with celiac disease. Dr. Gee was quoted as saying, “To regulate the food is the main part of treatment. The allowance of farinaceous foods must be small, but if the patient can be cured at all, it must be by means of diet.” As an example he sited a very sick child that was fed the best Dutch mussels every day during mussel season. The child thrived during mussel season, but as soon as the season was over, the child regressed and died before the next mussel season. In the 1920's, Sidney Hass presented the “Banana diet”. Sydney successfully treated 8 out of 10 children suffering with celiac disease using the banana diet. He claimed to have cured the 8 children that were on the banana diet, but the other 2 children not on the banana diet, died. The banana diet included the elimination of all bread, crackers, potatoes and cereals and for several decades, the banana diet was the only cure for celiac disease. Another important marker in the history of celiac disease were the findings by Dutch pediatrician, Dr. Willem Karel Dicke. In 1953 Dr. Dicke wrote his doctoral thesis for the University of Utrecht based on his observations that the ingestion of wheat proteins specifically, and not carbohydrates in general, were the cause of celiac disease. He was able to exemplify his findings based on bread shortages in the Netherlands during World War II. During the bread shortages, he found that the health of children with celiac improved tremendously. However, when the allied planes began dropping bread to the Netherlands, the same children quickly deteriorated. In the 1960's, it became evident that the best method for testing for celiac disease was to perform a biopsy. However, doctors were urged not to diagnose people as having celiac disease until it was proven that gluten was the cause for the damage. To determine if a patient had celiac disease, a biopsy would be performed to evaluate the damage done to the intestines. The patient would then be put on a gluten-free diet. Another biopsy would then be preformed to determine improvement in the intestines. After improvement the patient would be put back on a gluten diet, and another (3rd) biopsy would be preformed to determine reoccurring damages to the intestine, and thus the presence of celiac disease. This method was used for over 20 years as the best method for testing for celiac disease. Then in the 1980's studies by Dr. Stefano Guandalini, showed that the presence of celiac could be found in 95% of celiac cases by performing a single biopsy. In 1990 these findings helped create the new guidelines for celiac testing which were approved by ESPGHAN (European Society for Pediatric Gastroenterology). Also during this time, professionals starting recognizing celiac as an autoimmune disease and also began recognizing the correlation between gluten sensitivity and other autoimmune diseases. Here we are now in the year 2010; thirty years after the medical profession has successfully established the causes, tests and treatments for celiac disease, and thousands of years since celiac first made it's debut. Yet, as far as early diagnosis is concerned, we are still living in the dark ages. In this day and age, knowing what we know about celiac disease, childhood screening for celiac should already be mandatory. It's almost as if, when doctors were told in the 1960's to hold off on celiac diagnosis until they knew undoubtably that gluten was the cause for damage to intestines, they were never told, 'okay, now it's safe to diagnose for celiac'. Unfortunately, many (if not most) doctors still don't know how to appropriately diagnose patients for celiac disease, and therefor they continue to 'hold off' making celiac diagnoses, or misdiagnose regularly. Enforcing mandatory celiac screening in school age children has potential to eliminate the unnecessary suffering of millions of children and adults worldwide. My dearest hope is that we all get to see mandatory celiac testing in this lifetime. If you would like more information on “Celiac Awareness Month,” please check out the links below. The following links are trusted sites that also provide suggestions on how you can get involved and contribute to celiac awareness in your community. Celiac Disease Foundation Celiac Sprue Association Celiac Disease Timeline: Agricultural Revolution - celiac disease is born 1st Century A.D.- Aretaeus named celiac, “ koiliakos” 1st Century A. D.- Aretaeus documented“The Coeliac Affection.” 19th Century- Dr. Mathew Baillie published his observations on celiac 1888- Dr. Gee established the correlation between celiac and diet 1920's - Sydney Hass successfully treated celiac patients with “the banana diet” 1953 - Dr. Willem Karel Dicke confirmed wheat protein to be the cause for celiac disease 1960's - Biopsy established as the most accurate test for celiac 1980's - Dr. Stefano Guandalini established a single biopsy test for celiac 1990 - ESPGHAN established new guidelines for celiac biopsy testing Sources: Impact America's Silent Epidemic
  15. Celiac.com 08/21/2015 - Here's every celiac disease treatment currently in development in a single list: ALV003, by Alvine Pharmaceuticals, is a combination of two enzymes that break down gluten before it can provoke an immune reaction. The drug is a powder to be dissolved in water and taken before meals. ALV003 most recently passed a phase 2 clinical trial, results of which appeared in the June 2014 issue of Gastroenterology. Post-trial biopsies showed that ALV003 prevented intestinal damage in 34 volunteers with celiac disease who ate 2 grams of gluten each day for six weeks and also took the drug. Phase 2b, a 12-week trial, is now underway. AN-PEP, by DSM Food Specialties, is another enzyme that degrades gluten. AN-PEP is believed to work best when taken while gluten is still in the stomach. Results from a small 2013 study showing AN-PEP to be safe, appeared in the World Journal of Gastroenterology. For the study, 16 people ate 7 grams of gluten every day for two weeks and half of them also ate AN-PEP, and half took a placebo. However, the placebo group did not get sick enough during the course of the study to show that the enzyme had any effect, so further study is under way. ActoBiotics by ActoGenX uses Lactococcus lactis as an expression system to locally secrete bio-therapeutics such as cytokines, antibodies, hormones, etc. Early pre-clinical work with a genetically altered L. lactis secreting a peptide derived from gliadin demonstrated an in vivo suppression of gluten sensitization. Specifically, Huigbregtse et al. engineered L. lactis to secrete a deamidated DQ8 gliadin epitope (LL-eDQ8d) and studied the induction of Ag-specific tolerance in NOD ABo DQ8 transgenic mice [34]. Although apparently not part of the ActoGenX development program, recent work by Galipeau et al. also deserves mention in this context. The group treated gluten-sensitive mice with elafin, a serine protease inhibitor, delivered by the L. lactis vector, and found normalization of inflammation, improved permeability, and maintained ZO-1 expression. There is speculation that this is due to reduced deamidation of gliadin peptide. AVX176 by Avaxia Biologics, is an investigational oral antibody drug patented to provide "Antibody Therapy for Treatment of Diseases Associated with Gluten Intolerance." The patent, which expires on May 27 2029, provides broad coverage for treating celiac disease using orally administered antibodies produced by Avaxia's proprietary platform technology. BL-7010, by BioLineRx, is a novel co-polymer for the treatment of celiac disease, which significantly reduces the immune response triggered by gluten. This drug has been shown in mice to reduce the immune system response that leads to intestinal damage and villous atrophy in celiac disease. BL-7010 actually binds to the gluten protein, reducing the protein's toxicity.The drug, with the gluten molecule attached, then passes harmlessly through the digestive system to be expelled as stool. BL-7010 has undergone safety testing in humans and was found to be well tolerated. According to BioLineRx, testing will begin in mid-2015 to see if the drug works as expected to diminish gluten's effects on the body. However, BL-7010 is designed to protect only against gluten cross-contamination; it won't allow people with celiac disease to eat large amounts of gluten. CCR9, by Chemocentryx, is a drug called vercirnon, which is also known as Traficet-EN, or CCX282B), and was originally intended for patients with moderate-to-severe Crohn's disease. CCR9 has completed one Phase 2 trial in 67 patients with celiac disease. However, despite the completion of the trial several years ago, no results relating to celiac disease have been made public or published. Egg Yolk Enzyme. Little is known about efforts to develop a celiac treatment that uses egg yolk to coat gluten and allow it to pass through the body undetected, thus preventing an adverse gluten reaction in sensitive individuals. Like most other drugs being developed, this treatment would work to prevent reactions to small amounts of gluten, rather than as a cure. Larazotide Acetate by Alba Therapeutics. How it works: Larazotide acetate blocks a protein that carries pieces of gluten across the gut, where immune cells can see them. Fasano and his colleagues found that this carrier protein, called zonulin, is overproduced by celiac patients after they eat gluten. Results of the most recent phase 2 trial of larazotide acetate, published in February 2015 in Gastroenterology. The volunteers who took the drug experienced fewer days with disease symptoms during the 12 week-long study. Nexvax2, by ImmusanT, works much like an allergy shot. Nexvax2 exposes the immune system to gluten in a controlled way so that immune cells that are usually activated get turned off or eliminated. So far, Nexvax2 has completed a phase 1 trial showing it to be safe. More research is being done to test whether it is effective. Designed to work as a vaccine, Nexvax2 combines three proprietary peptides that elicit an immune response in celiac disease patients who carry the immune recognition gene HLA-DQ2. Similar to allergy shots, the vaccine is designed to reprogram gluten-specific T cells triggered by the patient's immune response to the protein. ZED1227 by Dr. Falk Pharma and Zedira recently announced the start of phase I clinical trials for the drug candidate ZED1227, a direct acting inhibitor of tissue transglutaminase. The small molecule targets the dysregulated transglutaminase within the small intestine in order to dampen the immune response to gluten which drives the disease process. Stay tuned for updates and progress reports as these drugs work their way through their various trial phases. Finally, share your thoughts on all these celiac drugs in the development pipeline. Are you excited, wary, both? Let us know by commenting below. Source: Gastroenterology Report
  16. Celiac.com 05/25/2018 - People with celiac disease need to follow a lifelong gluten-free diet. However, once their guts have healed, they can still be sensitive to gluten. Sometimes even more sensitive than they were before they went gluten-free. Accidental ingestion of gluten can trigger symptoms in celiac patients, such as pain in the gut and diarrhea, and can also cause intestinal damage. A new drug being developed by a company called Amgen eases the effects of people with celiac disease on a gluten-free diet. Researchers working on the drug have announced that their proof-of-concept study shows AMG 714, an anti-IL-15 monoclonal antibody, potentially protects celiac patients from inadvertent gluten exposure by blocking interleukin 15, an important mediator of celiac disease, and leads to fewer symptoms following gluten exposure. The drug is intended for people with celiac disease who are following a gluten-free diet, and is designed to protect against modest gluten contamination, not to permit consumption of large amounts of gluten, like bread or pasta. AMG 714 is not designed for celiac patients to eat gluten at will, but for small, incidental contamination. Francisco Leon, MD, PhD, study director and consultant for Amgen, says that their team is looking at AMG 714 “for its potential to protect against modest contamination, not deliberately eating large amounts of gluten, like bread or pasta.” Amgen hopes that AMG 714 will help celiac patients on a gluten-free diet to experience fewer or less sever gluten-triggered events. Findings of the team’s first phase 2 study of a biologic immune modulator in celiac disease will be presented at the upcoming Digestive Disease Week 2018. Read more at ScienceDaily.com
  17. Hello... New to the board, first post :). Glad I found you... History.... I had been suffering with loose soft frequent stools and gas/bloating and lethargy for a while... About 15 months ago I brought it up to my PCP, and she suggested running a test for celiac. It came back negative. Iron levels were a bit low so started on a supplement. The last year the above symptoms have worsened.. OBGYN attributed it to hormonal changes (im 46). Two months ago I went back to see my PCP again (her nurse this time) for an annual physical and blood work. Talked to her about my symptoms again... So we ran a full panel blood work (no celiac test). Results came back with dangerously low iron, low vitamin D. Based on my symptoms she immediately thought there was something blocking the absorption of iron in my body and brought up gluten. We didn't test this time but rather, she wanted me to completely give up gluten for 3 to 4 weeks, double up on iron supplements and see how I felt after a month. I should add that I'm also vegan so consume plenty of greens along with iron supplements so I should not be deficient in iron. It's now been 8 weeks gluten free (with the possible screw up, as im still learning what to avoid)... And while my bowel issues have gotten 90% better (solid stools, far less flatulence), I'm Still extremely fatigued. I can get 8 full hours of sleep, yet feel I still cannot function with such low energy levels. I have to nap every day. I was getting dizzy spells during my workouts. I feel after 8 weeks gluten-free my iron levels should have improved but I still feel Lethargic as all hell and I just want my life back. Doc says it could take 6 months for iron levels to restore. Is this the case with any of you? I should add that I'm a very active mom of two. I workout every day and am in very good physical condition, I eat very well.. So this should all be supplying my body with a lot of energy. I feel at a loss... I want my life back. Any words of wisdom?
  18. Celiac.com 05/29/2017 - Currently, a gluten-free diet is the only way to manage celiac disease. Can a celiac vaccine change that? One company thinks so. ImmusanT corporation has developed a therapeutic vaccine, Nexvax2, that is specifically designed to treat celiac disease. The vaccine is an adjuvant-free mix of three peptides that include immunodominant epitopes for gluten-specific CD4-positive T cells. The vaccine is designed to neutralize gluten-specific CD4-positive T cells to further antigenic stimulation. As part of their efforts to evaluate the vaccine, a team of researchers recently set out to investigate the efficacy of epitope-specific immunotherapy targeting CD4-positive T cells in celiac disease. Specifically, they assessed the safety and pharmacodynamics of the Nexvax2 vaccine in patients with celiac disease on a gluten-free diet. An article detailing the findings of their most recent effort, titled Epitope-specific immunotherapy targeting CD4-positive T cells in celiac disease: two randomized, double-blind, placebo-controlled phase 1 studies, appeared in the Lancet. The research team included Gautam Goel, PhD, Tim King, MBBChir, A James Daveson, MBBS, Jane M Andrews, MBBS, Janakan Krishnarajah, MBBS, Richard Krause, MD, Gregor J E Brown, MBBS, Ronald Fogel, MDCM, Charles F Barish, MD, Roger Epstein, MD, Timothy P Kinney, MD, Philip B Miner Jr, MD, Jason A Tye-Din, MBBS, Adam Girardin, BS, Juha Taavela, MD, Alina Popp, MD, John Sidney, BS, Prof Markku Mäki, MD, Kaela E Goldstein, BS, Patrick H Griffin, MD, Suyue Wang, PhD, John L Dzuris, PhD, Leslie J Williams, MBA, Prof Alessandro Sette, DrBiolSc, Prof Ramnik J Xavier, MD, Prof Ludvig M Sollid, MD, Prof Bana Jabri, MD, and Dr Robert P Anderson, MBChB. To assess the safety and pharmacodynamics of the vaccine in patients with celiac disease on a gluten-free diet, ImmusanT recently conducted two randomized, double-blind, placebo-controlled, phase 1 studies at 12 community sites in Australia, New Zealand, and the USA, in HLA-DQ2·5-positive patients aged 18–70 years who had celiac disease and were following a gluten-free diet. The goal of the study was to document the number and percentage of adverse events in the treatment period in an intention-to-treat analysis. The study enrolled a total of 108 participants from Nov 28, 2012, to Aug 14, 2014, in the three-dose study, and from Aug 3, 2012, to Sept 10, 2013, in the 16-dose study. Overall, 62 (57%) of 108 participants were randomly assigned after oral gluten challenge and 20 (71%) of 28 participants were randomly assigned after endoscopy. None of the study participants, investigators, or staff knew which patients received a given treatment; these details were known only by the study’s lead pharmacist. In the three-dose study, participants received either Nexvax2 60 μg, 90 μg, or 150 μg weekly, or placebo over 15 days; in a fourth biopsy cohort, patients received either Nexvax2 at the maximum tolerated dose (MTD) or a placebo. In the 16-dose study, participants received Nexvax2 150 μg or 300 μg or placebo twice weekly over 53 days; in a third biopsy cohort, patients also received either Nexvax2 at the MTD or a placebo. In both studies, about 5% of the participants reported were vomiting, nausea, and headache. Among participants given the MTD, four of eight subjects in the third cohort experienced adverse gastrointestinal treatment-emergent events; zero of three participants had adverse events in the biopsy cohort in the three-dose study, while five events occurred in five (63%) of eight participants in the first cohort, and three events in two (29%) of seven participants in the biopsy cohort of the 16-dose study. Those who received the vaccine at the MTD on either schedule showed no significant difference between average villous height to crypt depth ratio in distal duodenal biopsies, as compared with those who received placebo. In the 4-week post-treatment period, ascending dose cohorts underwent a further double-blind crossover, placebo-controlled oral gluten challenge, which had a fixed sequence. Meanwhile, biopsy cohorts received a gastroscopy with duodenal biopsies and quantitative histology within 2 weeks without oral gluten challenge. Of the participants who completed the post-treatment oral gluten challenge per protocol, interferon γ release assay to Nexvax2 peptides was negative in two (22%) of nine placebo-treated participants in the three-dose study. Compared with two (33%) of six who received Nexvax2 60 μg, five (63%) of eight who received Nexvax2 90 μg, and six (100%) of six who received Nexvax2 150 μg (p=0·007); in the 16-dose study, none (0%) of five placebo-treated participants had a negative assay versus six (75%) of eight who received Nexvax2 150 μg (p=0·021). The MTD of Nexvax2 was 150 μg for twice weekly intradermal administration over 8 weeks, which modified immune responsiveness to Nexvax2 peptides with no adverse impact on duodenal histology. Patients who received the intradermal administration of the vaccine reported gastrointestinal symptoms were not subtantially different to those seen with oral gluten challenge. While the commercial release of a viable vaccine is likely still some time away, early-phase trials have shown promise. Based on these results, ImmusanT will continue clinical development of this potentially therapeutic vaccine for celiac disease. Both trials were completed and closed before data analysis. Trials were registered with the Australian New Zealand Clinical Trials Registry, numbers ACTRN12612000355875 and ACTRN12613001331729. Source: The Lancet Affiliations: The researchers are variously affiliated with the Division of Gastroenterology and Center for Computational and Integrative Biology, Massachusetts General Hospital, Boston, MA, USA, the Broad Institute of Harvard and Massachusetts Institute of Technology, Cambridge, MA, USA; the Department of Gastroenterology, Auckland City Hospital, Auckland, New Zealand; the School of Medicine, University of Queensland, Brisbane, QLD, Australia; the Department of Gastroenterology & Hepatology, Royal Adelaide Hospital, Adelaide, SA, Australia; the Linear Clinical Research, Nedlands, WA, Australia; the Department of Gastroenterology, Alfred Hospital, Prahran, VIC, Australia; the Clinical Research Institute of Michigan, Chesterfield, MI, USA; the University of North Carolina School of Medicine, Chapel Hill, NC, USA; Wake Gastroenterology and Wake Research Associates, Raleigh, NC, USA; Atlantic Digestive Specialists, Portsmouth, NH, USA; Ridgeview Medical Center, Waconia, MN, USA; Oklahoma Foundation for Digestive Research, Oklahoma City, OK, USA; ClinSearch, Chattanooga, TN, USA; the Immunology Division, Walter and Eliza Hall Institute of Medical Research, Department of Medical Biology, University of Melbourne, Parkville, VIC, Australia; the Murdoch Children's Research Institute and Department of Gastroenterology, Royal Melbourne Hospital, Parkville, VIC, Australia; the Immunology Division, Walter and Eliza Hall Institute of Medical Research, Department of Medical Biology, University of Melbourne, Parkville, VIC, Australia; the Tampere Center for Child Health Research and Department of Pediatrics, University of Tampere Faculty of Medicine and Life Sciences and Tampere University Hospital, Tampere, Finland; the Tampere Center for Child Health Research and Department of Pediatrics, University of Tampere Faculty of Medicine and Life Sciences and Tampere University Hospital, Tampere, Finland; the Alfred Rusescu Institute for Mother and Child Care and Carol Davila University of Medicine and Pharmacy, Bucharest, Romania; Division of Vaccine Discovery, La Jolla Institute for Allergy and Immunology, La Jolla, CA, USA; the Tampere Center for Child Health Research and Department of Pediatrics, University of Tampere Faculty of Medicine and Life Sciences and Tampere University Hospital, Tampere, Finland; the Centre for Immune Regulation, KG Jebsen celiac Disease Research Centre, and Department of Immunology, University of Oslo, Oslo, Norway; the Oslo University Hospital-Rikshospitalet, Oslo, Norway; Department of Pediatrics, Department of Medicine, University of Chicago, Chicago, IL, USA; and ImmusanT in Cambridge, MA, USA.
  19. 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.
  20. So my 7 month daughter is having issues with corn. I have Celiac and am nursing so she has never even been in contact with gluten. I read today during some research that corn can sometimes cause the same symptoms as gluten in a Celiac patient. If you have experienced with this please leave a comment with your symptoms. Diarrhea, upset stomach, rashes, vomiting? I want to see if there could be a possible correlation as I feel like my daughter is immunosuppressed but the allergist claims it is not an immune response to the corn. Anyone that has experience with their own children I would love to hear from you.
  21. Hello, I've just made my account today, but i've read lots of posts in the past that helped me throw the bad days. I've been diagnosed with celiac 3 months ago (after 6 months of pain, gas, bloating, constipation, brain fog and fatigue) and i tried to be strictly gluten, corn, diary, soy (only 1 month) free. I also cut most of sugars, and other grains besides rice. I eat mostly veggies, fruits, fish, chicken, rice and quinoa. Sins then i've been back and forth with my symptoms as i had good and bad (more often) days . I learned that i need to be patient and give my gut time to heal, but for some time i have a continuously pain in lower right side of my abdomen, a pain that feels like i have a knife inside my gut. It gets worse after i eat and food arrives where small intestine meets the colon. I'm pretty sure i am gluten free and that i'm not experience any CC cause i have a food journal, the pain is a little different and i don't get fatigue, brain fog and depression symptoms. Does anyone of you have this kind of pain? Is this a part of healing process? I should give my gut more time to heal or i should go to take some tests?
  22. Celiac.com 02/08/2017 - "What if the kid you bullied at school, grew up, and turned out to be the only surgeon who could save your life?" --Lynette Mather If you ask any high school senior what in their life has changed the most since kindergarten, statistics show that many would answer moving from one school to another. However, the more drastic of changes are seen such as illnesses diagnosed during these critical school ages. In 2009 I was diagnosed with celiac disease, and that diagnosis has impacted my life in both positive and negative ways for my past, present, and future time at Indiana Area High School and beyond. Personally I have had to deal with bullying because of my disabilities. Bullying by definition is the use of force or coercion to abuse or intimidate others. I along with 20% of my peers nationwide in grades 9-12 (The Youth Risk Behavior Surveillance System) experience bullying in many different forms. Bullying can be teasing, hitting, leaving someone out, whispering behind backs, online harassment, shoving, remarks about race, sexuality, and disabilities. Before my diagnosis I was considered "normal" but as a result of my illness and "strange" dietary needs therefore I have been bullied. However, looking back on my experience I am happy to have dealt with the resistance because it has made me a better, more confident individual. I, like three million fellow Americans nationwide (National Celiac Disease), must deal with the stress of having celiac disease. I was diagnosed in 2009 after having lost my eyesight to a migraine. Celiac Disease is an often under-diagnosed autoimmune disease wherein the person cannot eat wheat, rye, barley, or oats, otherwise known as gluten, because their antibodies will attack their own system leading to other serious health issues such as cancer. Celiac Disease is spread through genes; my entire family, including my father, mother, and sister, has this disease. However, even with the growing awareness of celiac disease, there is also a growing skepticism. "Critics" of my disease claim that the gluten free diet is a fad. Many celebrities have tried to lose weight and failed to stay on this difficult diet. Restaurant chains are coming out with new gluten free menus every day to raise prices and profits, though they refuse to educate their servers about what someone with a gluten "allergy" cannot eat. While some people are sympathetic and know the outstanding facts about celiac disease, most of the population stays in the dark about this ailment. This causes frustration for people with celiac disease, like me, to have to deal with the resulting brick wall of resistance. In my small community it is very rare for someone to have such a disease that the public knows little about. This can cause doubt and disbelief, especially at a high school where everyone is just trying to "fit in". When I was diagnosed in 2009, I had just started ninth grade and I had also started playing two high school sports, softball and tennis. For the softball team it was a well-known fact that after every away game the softball boosters would buy each girl a twelve inch sub from a local deli to eat on the way home. Whenever my parents and I contacted the booster president to explain the situation with my disability and that I simply would like to have a salad, we were met with backlash. I did not understand at the time why a parent would refuse to supply another child with food after a physical activity when everyone else was getting a meal. This quickly made me an outcast on the softball team as the "strange girl with the made up disease", causing me to feel stressed and awful about myself over something that I could not control. I would have loved to have been able to "fit in" and eat the subs like my teammates rather than being different, especially after growing up able to eat gluten! It was a hard transition to make. I went from being able to eat the subs, donuts, pizza, and any other fast-food product to a strict dietary regime. After my long process through the education system, I finally got the meal I had a right to have. Unfortunately, the boosters' actions, forced us to go through the school system to "prove" I had a legitimate excuse not to eat the subs. I was distanced from other members of the team and, in subsequent years, had to deal with backlash from my teammates. They do not understand that it is not a personal choice to avoid gluten. I have a disability. I simply cannot eat it. Instead, they go back to the first year when I was eating the same foods they ate, and I get blamed for wanting to be "special" and get the more expensive food. I know that I am not alone in my struggle and that people with celiac disease around the world deal with what I deal with everyday - just like others who are bullied for being different. The after effects from my being bullied have shown themselves even in everyday situations. I have learned a great deal about myself and respect for other individuals' differences. I believe that if I had not been bullied I would not have the self-confidence, integrity, sense of right and wrong, or leadership skills that I have now. It has allowed me to go above and beyond in tough situations, knowing that I can overcome them. I know that even though the times are tough with my disability, and that while others may never understand mine, I can certainly understand and respect theirs. I respect and do not judge others simply based on what they can or cannot eat. I also know that just because someone does not "look" ill on the outside does not mean they are not dealing with something awful on the inside. This allows me to make friends easily and to understand others more effectively. Being bullied has also allowed me to learn new leadership skills that I use in my volunteer work. I am confident in myself that I can go forward into the world of higher education and succeed because of the values I now hold dear. The most drastic change I have encountered in my high school career is the diagnosis of celiac disease in 2009. This diagnosis has impacted my life in both positive and negative ways, in the past, present, and future at Indiana Area High School and beyond. I have had to deal with bullying because of my disabilities. Bullying, by definition. is the use of force or coercion to abuse or intimidate others. I along with 20% of my peers nationwide in grades 9-12 (The Youth Risk Behavior Surveillance System) experience bullying in many different forms. After dealing with the effects of my being bullied, I know that it has made me a better person. I can travel the world and make lasting relationships based on acknowledging and respecting differences in every person I encounter.
  23. Hi, it's me again. A quick question for you guys! Im waiting to see a gastro in June, but as symptoms have been almost unbearable, i decided to do a DNA test in the interim to see if I had the hladq2 or hladq8 markers. Got the results back a couple days ago, and i have neither of those markers, and have been told i have a low risk of developing the disease. What I would like to know is this, can you test negative for the dq2/dq8 markers and still go on to develop celiac disease? Any thoughts, opinions etc would be very appreciated! Thank you
  24. I went gluten-free over nine years ago. I was always thin - 5'9" and roughly a size eight. After years of chronic pain and mood issues and insomnia a doc caught the celiac. Soon after quitting gluten all symptoms subsided but I quickly gained A LOT of weight. It's been many years, many docs and MANY different diets. I can't lose the weight. I've tried every variation of diets and it doesn't budge. I exercise regularly and eat a fraction of what others eat. I'm so tired of people telling me "calorie in calorie out." It's BS! I've seen tons of docs, most of which don't believe my diet log. I did crossfit for five years. The more paleo I ate and the harder I exercised the more with I gained. Doc told me I blew my adrenals so I stopped and stuck to walking for eight months. I recently took up yoga and I'm gaining again. I like to about about 90% paleo, organic with minimal red meat. I also don't eat soy and I never drink coffee. My thyroid tests are normal and I've tried all the thyroid meds and they don't do anything. I'm about 40 lbs over weight and SOOOOO tired of it. I'm covered in a very fatty layer and look full of cellulite. I do supplements, cleanses, you name it. If I eat fruit, it's low glycemic. I only eat minimal nuts to avoid calories. It just doesn't add up. I'm pretty sure, whatever anyone suggests, I've tried it. I've seen the best docs in the area and they are baffled. I have high insulin but I'm not prediabetc. I have gorgeous blood work - It appears I'm very healthy. I've monitored my blood glucose and... normal. My A1C is 4.6! I have a team of naturopaths and no one can figure it out! Anyone else have this problem!?!? I'm fat as hell and I shouldn't be. If anyone wants to tell me I don't eat enough... I tried that route too (more food, more frequently to boost metabolism - nothing). IDEAS!?!?!?!?!?!?
  25. Hey guys so I have had this rash going on for a few months and my doctor just looked at it and said she didn't know what it was and to just use a steroid cream. The cream only works sometimes and generally just stops itching and the blisters from getting bad but never clears it up. I have questioned gluten sensitivity in the past because every time I eat it I immediately get hiccups. Anyhow my rash is on the sides of my ring and middle finger about 2 inches long. It starts as little clear water pockets under the skin and is incredibly itchy. Then it turns to red scaly and peeling and the blisters become raised. Does this sound like something anyone is experienced? Any suggestions for how to get my dr. To look into it more? I'm just nervous because last visit she charged me 800$ to tell me she didn't know what it was and send my home with a prescription that doesn't even work really. Thanks so much in advance!
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