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Found 65 results

  1. Celiac.com 11/13/2018 - Ubiquitin is highly conserved across eukaryotes and is essential for normal eukaryotic cell function. The bacterium Bacteroides fragilis is part of the standard human gut microbiome, and the only bacterium known to encode a homologue of eukaryotic ubiquitin. The B. fragilis gene sequence points to a previous horizontal gene transfer from a eukaryotic source. The sequence encodes a protein (BfUbb) with 63% identity to human ubiquitin, which is exported from the bacterial cell. Is molecular mimicry of human ubiquitin by gut microbe linked to autoimmune diseases like celiac disease? A team of researchers recently set out to determine if there was antigenic cross‐reactivity between B. fragilis ubiquitin and human ubiquitin and also to determine if humans produced antibodies to BfUbb. The research team included L. Stewart, J. D. M. Edgar, G. Blakely and S. Patrick. They are variously affiliated with the School of Biological Sciences, University of Edinburgh, Edinburgh, UK; the School School of Biological Sciences, Queen’s University Belfast, Belfast, UK; the Regional Immunology Laboratory, Belfast Health and Social Care Trust, Belfast, UK; and the Wellcome‐Wolfson Institute for Experimental Medicine, Queen’s University Belfast, Belfast, UK. Molecular model comparisons of BfUbb and human ubiquitin predicted likely structural similarity with 99.8% confidence. The team used linear epitope mapping to identify cross-reacting epitopes in BfUbb and human ubiquitin. Also, at least one epitope of BfUbb does not cross‐react with human ubiquitin. The team used enzyme‐linked immunosorbent assay to compare the reaction of human serum to BfUbb and human ubiquitin from 474 subjects among four groups: (1) newly autoantibody‐positive patients, (2) allergen‐specific immunoglobulin (Ig)E‐negative patients, (3) ulcerative colitis patients and (4) healthy volunteers. The team’s data show that the exposure to BfUbb into the human immune system triggers the creation of IgG antibodies. Patients referred for first‐time autoimmune disease testing are more likely to have a high levels of antibodies to BfUbb than are healthy volunteer subjects. From this, the team concludes that molecular mimicry of human ubiquitin by BfUbb could be a trigger for autoimmune disease. Finding and understanding potential triggers for autoimmune conditions helps to take us one step further to understanding and potentially curing celiac disease. Stay tuned for further developments in their arena. First published: 04 August 2018 https://onlinelibrary.wiley.com/doi/full/10.1111/cei.13195
  2. Celiac.com 10/08/2018 - A new population based study reveals that celiac disease is associated with a wide range of medical conditions, including liver disease, glossitis, pancreatitis, Down syndrome, and autism, according to a database study of more than 35 million people. Moreover, people with autism have celiac disease at rates almost 20 times higher than in those without autism, reported lead investigator Daniel Karb, MD, a second-year resident at University Hospitals Case Medical Center in Cleveland. That raises the question of whether people with autism should be screened for celiac disease, and whether they might benefit form a gluten-free diet. "If you have a patient who is autistic and they have all these unusual symptoms, you might want to screen them for celiac disease," Dr. Karb told the World Congress of Gastroenterology last year. It is known that there are unusual symptoms of celiac disease, which include anything outside the classic symptoms of malabsorption, steatorrhea, malnutrition, abdominal pain, and cramping after eating, "but this is putting numbers to it," said Dr Karb. For their study, Karb and his fellow researchers used the Explorys database to pull health record data from 26 major integrated healthcare systems in the United States. Their search covered the period from 2012 to 2017. Of 35,854,260 people in the database, they found 83,090 with diagnosed celiac disease. Overall, the age-adjusted prevalence of celiac disease in that group was 0.22%, which is much lower than the 1% to 2% range previously estimated. Those numbers are not unusual, said Dr. Karb says that the researchers “don't think there are fewer people with celiac disease, just that it may be under-diagnosed.” The rates are, he says, “what you might expect when you screen asymptomatic people." Overall, the team found a significant connection between celiac disease and 13 other autoimmune disorders, such as type 1 diabetes, Crohn's disease, and ulcerative colitis. Moreover, celiac disease is associated with every autoimmune disease the team looked at, except for primary biliary cholangitis, Dr Karb says. This is some pretty startling study data. We knew that celiac disease was linked to other autoimmune conditions, and there has been some surprising data about gluten-free diets helping patients with autism, but these numbers are enlightening. It seems that people with autism should definitely be screened for celiac disease, and placed a gluten-free diet, if tests confirm celiac disease. Stay tuned for more information on this important celiac disease topic. Source: World Congress of Gastroenterology 2017
  3. Celiac.com 08/13/2018 - It’s not uncommon for people to have psychiatric reactions to stressful life events, and these reactions may trigger some immune dysfunction. Researchers don’t yet know whether such reactions increase overall risk of autoimmune disease. Are psychiatric reactions induced by trauma or other life stressors associated with subsequent risk of autoimmune disease? Are stress-related disorders significantly associated with risk of subsequent autoimmune disease? A team of researchers recently set out to determine whether there is an association between stress-related disorders and subsequent autoimmune disease. The research team included Huan Song, MD, PhD; Fang Fang, MD, PhD; Gunnar Tomasson, MD, PhD; Filip K. Arnberg, PhD; David Mataix-Cols, PhD; Lorena Fernández de la Cruz, PhD; Catarina Almqvist, MD, PhD; Katja Fall, MD, PhD; Unnur A. Valdimarsdóttir, PhD. They are variously affiliated with the Center of Public Health Sciences, Faculty of Medicine, University of Iceland, Reykjavík, Iceland; the Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden; the Department of Epidemiology and Biostatistics, Faculty of Medicine, University of Iceland, Reykjavík, Iceland; the Department of Rheumatology, University Hospital, Reykjavík, Iceland; the Centre for Rheumatology Research, University Hospital, Reykjavík, Iceland; the National Centre for Disaster Psychiatry, Department of Neuroscience, Psychiatry, Uppsala University, Uppsala, Sweden; the Stress Research Institute, Stockholm University, Stockholm, Sweden; the Centre for Psychiatry Research, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden; the Stockholm Health Care Services, Stockholm County Council, Stockholm, Sweden; the Astrid Lindgren Children’s Hospital, Karolinska University Hospital, Stockholm, Sweden; the Clinical Epidemiology and Biostatistics, School of Medical Sciences, Örebro University, Örebro, Sweden; the Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden; and the Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, Massachusetts. The team conducted a Swedish register-based retrospective cohort study that included 106, 464 patients with stress-related disorders, 1,064 ,640 matched unexposed individuals, and 126 ,652 full siblings to determine whether a clinical diagnosis of stress-related disorders was significantly associated with an increased risk of autoimmune disease. The team identified stress-related disorder and autoimmune diseases using the National Patient Register. They used Cox model to estimate hazard ratios (HRs) with 95% CIs of 41 autoimmune diseases beyond 1 year after the diagnosis of stress-related disorders, controlling for multiple risk factors. The data showed that being diagnosed with a stress-related disorder, such as post-traumatic stress disorder, acute stress reaction, adjustment disorder, and other stress reactions, was significantly associated with an increased risk of autoimmune disease, compared with matched unexposed individuals. The team is calling for further studies to better understand the associations and the underlying factors. Source: JAMA. 2018;319(23):2388-2400. doi:10.1001/jama.2018.7028
  4. 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.
  5. I honestly don't know what's going on with me. I've had health issues going on around 7 years now. I am 21 years old and it has ruined my life so far. My dad is celiac so i thought it was autoimmune i could have. I got the blood test done for that and it came back negative. I've been doing intermittent fasting for the last two weeks and it seems to have been helping but earlier i hit rock bottom. I hadn't eaten anything from around 8pm last night and i broke the fast at around 1:30pm with a big bowl of brown rice and carrot and ever since then i've been feeling really bad. I got fatigued, irritable, sinus issues, face got puffy, eyes puffy, redness on skin. I don't know why this happens to me it's happened many times before too after i eat stuff. Anyways here's a list of my symptoms: My symptoms aren't all there at the same time, they fluctuate. My symptom list is as follows: stingy eyes puffy eyes dark circles under eyes anxiety heart palpitations bloating belly fat (slight) (i'm skinny for my height but i have excess fat in certain places) breast fat (slight) Sometimes when my health gets really bad my face starts getting rosacea-like symptoms puffy face sinus issues brain fog bad short term memory paleness (especially in hands) cold hands and feet loss of collagen in skin oily skin/hair bloodshot eyes flaky skin between eyebrows fatigue irritability lack of sex drive insomnia i think my vision is worse when my health is down too, i have bad eyesight anyways so it's hard to tell flatulence blackheads/whiteheads on nose stiff joints
  6. Okay. Long story short - I've had itching blisters coming and going for at least 10 years, I'm 27 now. When I was 23 I got diagnosed with an autoimmune kidney disease. Ever since then I've been very careful with my diet and avoiding, but not completely cutting out gluten. I've had stomach problems since I was a kid. Had acne since I was 14. Diagnosed with PCO. Always feeling tired. Can eat tons of food and never gaining any weight. Recently I found out I am anemic, Ferritin was 7 (range is 10-70 I think) I was also deficient in D-vitamin. They took transglutaminas tests but it was negative. I started eating gluten again in February, and my blisters and ezcema like rashes came back quite quickly. I know a gastroenterologist and told him about my low iron, my blisters etc. And he immediately said that it sounds like celiac disease. He scheduled a gastroscopy (they go in with a camera through the mouth and take biopsies from the small intestine) that I did today. The doctor took 3 biopsies and said that it looked like the villi was flattened. He also said that I could start a gluten free diet if I wanted to before the test results comes back. I'm just confused right now... shouldn't they do a skin biopsy on my blisters as well? I read about ppl having DH who do that and get diagnosed that way. how can the blood tests be negative and the biopsy not? if i go on a non gluten diet now, my blisters and rashes will go away which is good ofc, but then if the biopsy come back negative, they can't do a skin biopsy? It would make so much sense to me if I'm celiac. Therefore I'm scared the biopsy wont show anything since I've been going on and off gluten for years. Although the doctor said it looked like I am celiac? And the blisters can't be anything else than DH!! And the low iron and everything. Ugh. I just want the results now... And know for sure.
  7. Well, for starters I think I am most likely like most people here. I have been struggling with a variety of symptoms, and trying to figure out what is bothering me has been a total guessing nightmare, with very little help from doctors. Even though I’ve gone to see them so many times. I recently found this biotech company that helps people find out if they really have a gluten celiac problem, or if it is something else. Using dna through hair or saliva, it was pain free, which was awesome! They tested me for a combination of intolerances/allergies/etc. My dietician referred me to them. It’s a place called Lab 600, they have a dot com and I got some testing done with them direct to their lab service and found out it is the same lab company that the allergist uses that I was going to go see next month. He wanted 1,100 for the testing at his office! The lab fee from the lab company itself was only $99 direct. So I went direct to them. They gave me Physician accepted results for my family doctor to keep on file and it cost me way less to get real answers without paying big prices. I wanted to let everyone else know because dealing with doctors who inflate prices is ridiculous, and I think it should be regulated or illegal to increase rates tgat high! Anyhow, I thought gluten was what was bothering me and my test came back it let me know that it was actually lactose. I had no idea, I really thought that it was a celiac issue. I got my daughters checked as well. One of them was scott-free no issues, the other one did come back with gluten intolerant results, with a wheat allergy and they also found out she was vitamin D deficient. So we have started to give her vitamin D supplements, and she has been starting to feel way better. So if this experience can possibly help someone else here I wanted to post, as I have been using the forum here and many other sites trying to get advice through all the symptoms and chaos of trying to figure out what was going on with myself, and I know how stressful it can be. Good luck to everyone!
  8. Great news! I have have joined the “Peter club”! My villi are healed! The gluten free diet is working! I was diagnosed around 4/2013 with only a positive DGP IgA and a Marsh Stage IIIB (moderate to severe villi damage). My main symptom was anemia which I recovered from in just a few months with iron supplements. Minor symptoms persisted the first year as I discovered food intolerances (e.g. Xanthan Gum) and worked with known intolerances (lactose, garlic, mushrooms, eggs, etc). Many intolerances resolved (and some did not) as I healed. A year later, I was diagnosed with diabetes and further modified my diet (fewer carbs, more fats, less sugar, even from grains). I did well. I did not return to my GI and instead worked with my PCP. I never had my antibodies tested after my initial diagnosis to see if they were coming down (bad move). I did get a bone scan after I experienced some fractures and was checked for nutritional deficiencies. I stupidly assumed that my antibodies would always be elevated like my thyroid antibodies have been for 20 years. I strongly recommend annual check ups for celiacs. Over the years, My DGP IgA levels were off the chart tested after hidden gluten exposures. My symptoms were severe and were not consistent which prompted my visits to my new GI. I would recover, though it took months....like 6. In January 2017, I think I was glutened again (I had not eaten eaten out for a year except at 100% gluten-free restaurants ), and I ate mostly unprocessed foods. I had a tooth infection, tooth extraction, flu and a cold all in a span of one month. I developed chronic hives that last for six months. So, I went back to my GI (off the charts DGP IgA). My allergist blamed my Hashimoto’s or an undiagnosed autoimmune issue, my PCP just mentioned how I am always chronically inflamed. My GI offered an endoscopy, but I declined. Instead, I opted for a slightly modified Fasano diet. I did not give up coffee! Finally, I was still having abdominal issues, so I requested the endoscopy for the first week in January. Why is my DGP IgA always elevated? Where was I getting gluten? Heck, my hubby has been gluten-free for 17 years, so I know the diet. He was okay though there are some things he never eats and I do. Am I super sensitive or am I developing another AI issue? Maybe since I have other antibodies (thyroid) floating around, I should discard this test result (not much research for post diagnosis testing issues). I was driving myself crazy. So, I needed to know for sure what was going on. This time, my new GI had a newer scope. I was shown the results (photos) while in recovery. You could could see the villi as the magnification was that strong). I did have a stomach polyp which was removed and biopsied. The pathologist reported no damaged in my duodenum, and that the polyp was not cancer and no H. Pylori. He noted chronic gastritis (this explains my stomach pinching sensation and indigestion, etc.) I was advised to continue my gluten free diet. I assume my stomach is still healing as my antibodies are no doubt still elevated (off charts in 4/2017 and 80 in 11/2017) though hopefully lower than 80. I am now considering giving up coffee for a while and looking into foods that will help heal the gastritis since I react to so many different medications (anaphylactic) and each medication must be carefully monitored. Oddly, did not have gastritis when I was initially diagnosed. I am happy to be a part of the Peter club! I plan on staying on the modified Fasano diet until my stomach has healed (though I did eat some homemade (Xanthan Free) cookies over the holidays). I am also happy to report that my HA1c (diabetes test) was in the normal range! Yes, normal, not even prediabetic! So, it is possible to mange Type II diabetes without drugs. I typed this on an iPad, so expect errors. I probably made a few mistakes regarding times too, so expect a few tweaks here and there by the end of the day.
  9. Celiac.com 01/03/2018 - A recent study indicates that symptoms for some autoimmune disease can vary depending on the time of day. A substance called transcription factor BMAL1 plays a crucial role in the human molecular clock, regulating biological pathways that drive 24 hour circadian rhythms in behavior and physiology. The molecular clock has a major influence on innate immune function, and disturbances in circadian rhythms are associated with increases in multiple sclerosis (MS), for example. But, researchers just don't have much good information on the factors that influence this association. A team of researchers recently set out to better understand the factors that influence this association. The research team included Caroline E. Sutton, Conor M. Finlay, Mathilde Raverdeau, James O. Early, Joseph DeCourcey, Zbigniew Zaslona, Luke A. J. O'Neill, Kingston H. G. Mills, and Annie M. Curtis. They are variously affiliated with the Immune Regulation Research Group, Trinity Biomedical Sciences Institute, Trinity College Dublin, Dublin, Ireland; the Inflammatory Research Group, School of Biochemistry and Immunology, Trinity Biomedical Sciences Institute, Trinity College Dublin, Dublin, Ireland; and with the Department of Molecular and Cellular Therapeutics, Royal College of Surgeons in Ireland (RCSI), Dublin, Ireland. In a recent study, the research team found that BMAL1 and time-of-day regulate the accumulation and activation of various immune cells in a CNS autoimmune disease model, experimental autoimmune encephalomyelitis (EAE). In myeloid cells, BMAL1 maintains anti-inflammatory responses and reduces T cell polarization. Loss of myeloid BMAL1 or midday immunizations to induce EAE create an inflammatory environment in the CNS through expansion and infiltration of IL-1β-secreting CD11b+Ly6Chi monocytes, resulting in increased pathogenic IL-17+/IFN-γ+ T cells. These findings show the important role played by the molecular clock in processing innate and adaptive immune crosstalk under autoimmune conditions. Understanding the exact ways in which the human molecular clock influences innate immune function, and by extension, autoimmune diseases, will help doctors to better understand these disease, and to develop better approaches to treatment, among other things. Source: Nature.com
  10. Hi to any & all who read my post, and an advanced thank you to those who reply, My post may be kind of robust & lengthily, but please read until the end if you are able. To give a sort of "back story" here, I'll explain my situation in a nutshell. In November of 2014 I was diagnosed with a gluten intolerance by my allergist after recurrent, severe mouth ulcers and a bodily rash. I had a blood allergy panel, but NOT a Celiac specific panel, which ruled out other food allergies completely - corn, pea, chickpea, chicken, tomato, egg, milk, etc. My allergist suggested a gluten-free diet, which I adopted & have been adhering to since then. Recently, I've been acutely sick since August of 2016, so we're talking a year plus now. My symptoms began with a burning abdominal sensation, pain after eating, premature and uncomfortable full feeling, bloating, etc. My internist referred me to my current GI doctor where I was diagnosed with GERD (chronic acid reflux) , and prescribed Omeprazole, which I still take daily. My next appointment in February had me still feeling awful & my GI doctor decided to perform an upper endoscopy, which I did in March. He was looking for ulcers, evidence of bleeding or infectious disease, and Celiac. Mind you, I had informed him that I've been eating strictly gluten free for almost three years now. He claimed this really didn't matter? This has left me wondering. Anyway, the results came up empty, but I was found to have evidence of gastritis. Then came the rest of my symptoms - frequent diarrhea, bloody diarrhea, extremely greasy stools, stools that float, mucus in stools, unable to "wait" to use the bathroom (I.e. Urgency), alternations of diarrhea and constipation, weight loss, low grade fever, EXTREME fatigue, poor concentration, memory loss, cognitive decline, and my mouth sores have reared their ugly head once again. After I first went gluten-free, the ulcers probably cleared up for a good year at least, which was heaven on earth for me. Now, they're back with a ruthless vengeance. As we speak, I've barely recovered from one for a day or so, and I'm down with two more. You can't even make this stuff up. After I addressed these new symptoms with my GI, he was concerned I may have had Crohn's Disease or Colitis, so he performed a colonoscopy, which ruled out both conditions through gross observation & biopsy samples. Since colonoscopies can only read so much of your colon & terminal small intestine, I then had a PillCam to see the rest. The only results he could suggest was that I have a "slow bowel transit," so I was diagnosed with Irritable Bowel Syndrome. The umbrella term for all intestinal and abdominal suffering with no definitive cause. Summary of my bible here is that I'm still suffering greatly. The intestinal issues are really giving me poor quality of life, and these pervasive mouth ulcers are more than I can bare anymore with the pain, inability to eat, weight loss, etc. it's all a sick and harrowing cycle that I am caught in the middle of. In saying this, I'm almost curious that I could have Celiac disease that was horribly missed. If I had already been gluten free & a biopsy was taken it would appear as though I'm a healthy individual, no? I was informed you had to be eating a strict gluten FILLED diet prior to ANY testing. ALL of my testing was performed after I already went gluten free, which could have altered results horribly. I'm almost crazy enough to think that if this is the case, I'm going to eat gluten just so I can be re-tested because I can't go on like this anymore. Can anyone please clarify and/or suggest something?
  11. I recently read a on a Celiac research site, that when a non Celiac gluten sensitive person is blood tested for evidence of an autoimmune disease, they will never test positive for that disease and therefore continue to go without a correct diagonises. I am looking for a copy of that research document because I have to change my rheumatologist because he retired and I have met others who continue to live without the correct diagnoses all because we are gluten sensitive! He headed the Rhumatology department of a large teaching hospital and knew just by looking at me that I have Scleroderma and Raynaud's. I went on to be seen for Sjogren's by a cornea specialist and there was a great debate as to whether I qualified because of my ANA test. (I have the most severe dry eye with cornea damage, dry mouth and dry vagina and the DNA that indicates I could be a candidate for Sjogren's.). This would be an important find for the community of us that continue on our search for health. I am 100% gluten free for 5 years; research gluten and its impact on our life; coach people that have gluten issues on how to build their life without gluten and embrace a new way to live; my 21 year old grandson is gluten sensitive and has several autoimmune diseases and my sisters and cousins have both also.
  12. Celiac.com 09/19/2017 - Hookworms. Intestinal parasites. They sound gross. The thought of having one's gut infected with a parasitic worm generally makes people's skin crawl. Indeed, intestinal worms, like hookworm, have a bad reputation among health experts, and have been the subject of fierce public health campaigns seeking their eradication. However, researchers have also documented the gut healing abilities of parasites like hookworm. In fact, part of how hookworms seem to work in nature is to promote an optimal gut environment in which they can thrive. In nature, the guts of people infected with hookworm are generally healthy. Could hookworms and other intestinal parasites prove key to treating and possibly eliminating diseases like celiac, and asthma? A number of clinicians and researchers feel that if they can just get the right strain of hookworm, at the right levels, they can basically eradicate celiac disease, and possibly asthma and other inflammatory diseases. When hookworms are introduced into the gut of people with celiac disease in the right amount, and kept at therapeutic levels, patients see their celiac symptoms disappear and their guts return to a healthy, normal condition. In fact, hookworms do not reproduce once inside the human gut, so if doctors put , say, 10 hookworms into a gut to treat celiac disease, there will be 10 there later, not more. In nature, the way humans build up dangerous levels of hookworm is via unsanitary environmental conditions and repeated exposure to more hookworms. Done clinically, the hookworm would present little or no danger to the human who was hosting it. While still very much in the experimental phase, researchers hope to investigate a number of strains to determine the best therapeutic levels for such disease treatments. For that, they will need FDA approval. Remember, the fecal transplant was first described in the 1950s, but took decades to catch on as a conventional treatment for gut disorders, such as c-dif bacteria, partly because it was seen as crude and somehow objectionable. But it proved to work. Really well. So much so that it's now a fairly conventional treatment. Could the hookworm follow a similar path from crude and weird to cool and effective? Could hookworms be used to cure celiac disease? Only close study will tell us for sure, and that's why the move to get FDA approval is an important one. For that, special strains of hookworm must be approved. "One of the big roadblocks is having the parasites that the FDA will allow you to infect people with," says John Hawdon, vice president of the American Society of Parasitologists and a researcher at the George Washington University. He and his colleagues are applying for permission to grow hookworm larvae to standards fit for testing in humans, which is not currently permitted in the United States. Hawdon says he anticipates a lengthy application process. Stay tuned for news on efforts to develop hookworm as a potential cure to celiac disease, asthma, and more. Sources: popsci.com iflscience.com
  13. Celiac.com 10/12/2015 - There's been a good deal of attention devoted to gluten sensitivity in people without celiac disease, but researchers still don't know much about potential risks associated with the condition. A research team recently looked at the prevalence of autoimmune diseases among patients with non-celiac wheat sensitivity (NCWS), and investigated whether they carry antinuclear antibodies (ANA). The research team included A. Carroccio, A. D'Alcamo, F. Cavataio, M. Soresi, A. Seidita, C. Sciumè, G. Geraci, G. Iacono, and P. Mansueto. They are variously affiliated with the DiBiMIS University of Palermo, Palermo, Italy; the department of Internal Medicine at Giovanni Paolo II Hospital in Sciacca, Italy; the DiBiMIS University of Palermo, in Palermo, Italy; the department of Pediatric Gastroenterology in ARNAS Di Cristina Hospital, Palermo, Italy; and the Surgery Department at the University of Palermo in Palermo, Italy. The research team conducted a retrospective study of 131 patients diagnosed with NCWS, 121 of whom were female. The average patient age was 29.1 years, and the study was conducted at 2 hospitals in Italy from January 2001 through June 2011. The team also collected data from 151 patients with celiac disease or irritable bowel syndrome, who served as control subjects. They reviewed patient medical records to identify those with autoimmune diseases. They then conducted a prospective study of 42 patients, 38 of whom were female, with an average age of 34 years, who had been diagnosed with NCWS from July 2011 through March 2014 at 3 hospitals in Italy. For the prospective study, one hundred age- and sex-matched subjects with celiac disease or IBS served as control subjects. The team collected serum samples from all subjects and measured ANA levels using immunofluorescence analysis. Participants completed a questionnaire and the team reviewed patient medical records to identify those with autoimmune diseases. In the retrospective analysis, about 30% of patients with either NCWS or celiac disease developed autoimmune diseases; mainly Hashimoto's thyroiditis, of which there were 29 cases. Compare this with about 4% of IBS who developed an autoimmune disease (P < .001). In the prospective study, 24% of patients with NCWS, 20% of patients with celiac disease, and 2% of patients with IBS developed autoimmune diseases (P < .001). In the retrospective study, serum samples tested positive for ANA in 46% of subjects with NCWS (median titer, 1:80), 24% of subjects with celiac disease (P < .001), and just 2% of subjects IBS (P < .001). In the prospective study, serum samples were positive for ANA in 28% of subjects with NCWS, 7.5% of subjects with celiac disease (P = .02), and 6% of subjects with IBS (P = .005 vs patients with NCWS). From these results, they conclude that positive ANA results are associated with the presence of the HLA DQ2/DQ8 haplotypes (P < .001). Source: Gastroenterology. 2015 Sep;149(3):596-603.e1. doi: 10.1053/j.gastro.2015.05.040.
  14. Celiac.com 08/01/2017 - Although autoimmune disorders are not widely associated with Parkinson disease, there is increasing evidence for a link between immunity and neurodegenerative disorders. Indeed, both innate and adaptive immunity have been implicated in neurodegenerative disorders. A team of researchers recently set out to examine the connection between immunity and neurodegenerative disorders. The research team included Nikolaus R. McFarland, MD, PhD; Karen N. McFarland, PhD; and Todd E. Golde, MD, PhD. They are variously associated with the Center for Movement Disorders and Neurorestoration, Department of Neurology, College of Medicine, University of Florida, Gainesville, the Center for Translational Research in Neurodegenerative Disease, College of Medicine, University of Florida, Gainesville, the McKnight Brain Institute, University of Florida, Gainesville, and the Department of Neuroscience, College of Medicine, University of Florida, Gainesville. One of the more interesting examples the researchers examined is TREM2, a member of the immunoglobulin receptor superfamily that expresses itself in microglia and tissue macrophages, and which has gene variants associated increased Alzheimer ’s risk. They also took a look at other TREM2 variants that are linked to the development of polycystic lipomembranous osteodysplasia with sclerosing leukoencephalopathy, a dementia associated with bone cystic lesions. Another example with less clear biological significance is the reproducible genetic association between a single-nucleotide polymorphism (SNP) in the locus and type 1 diabetes. We are at the very beginning of a research effort to better understand the connection between immunity and neurodegenerative disorders. It may take a while, but the results of these efforts will likely help researchers design better diagnostic and treatment regimes. Source: JAMA Neurol. Published online June 5, 2017. doi:10.1001/jamaneurol.2017.0843
  15. I am new here and looking for help and answers. Thanks in advance for any help you can give. Despite frequent testing I've not been diagnosed with celiac yet but I do wonder if it's the cause of all my issues. I have myriad life altering symptoms and I'm desperately trying to get to my root cause. I’ve been really quite sick since I was a child, when I had extensive gastric issues, followed by chronic fatigue , a rash and depression as a teenager. I am 41 now and have a number of illnesses, most of them autoimmune: Hashimoto's hypothyroidism Psoriasis Likely autoimmune atrophic gastritis (under investigation) Pernicious anaemia (low B12) Rapid cycling type 1 bipolar disorder with psychosis that hasn't responded to treatment with over 20 different psychiatric drugs Migraine (three a week) Chronic fatigue syndrome Hypertension Fatty liver Metabolic syndrome Familial hypercholesterolemia Obesity Investigated for celiac 3 times but not detected however my gastro did observe that my gut was hugely distended and that my stomach sat forward. I have many other symptoms as yet unattributed: Rash on eyebrows and cheeks, although it is mostly down the sides of my nose and not under my eyes Circular rash on chest Flaky rash on scalp Poor balance Poor positional awareness Clumsiness Weakness and muscle loss Foggy thinking Very poor memory Confusion (sometimes debilitating) Occasional panting / shortness of breath Anxiety and paranoia Persecution complex Restless legs Tachycardia and palpitations Sleep disturbances Debilitating intermittent ankle pain Aches in every joint and muscle Muscle stiffness Mouth ulcers Dry eyes Cold extremities Poor circulation Pins and needles Pain in calf muscles when walking more than 200 yards Total hair loss on lower legs Constipation / diarrhoea Blood in stools Pale complexion Moon face While there are a lot of conditions and symptoms it's the neuropsychiatric issues that have become completely debilitating, to the extent that I've been admitted to a psychiatric hospital 5 times and have not responded to any of the 20 different psychiatric drugs that I've been prescribed. I had to work part time for 4 years until a year ago when I was forced to stop work entirely. I've always been sick since childhood but in the last 5 years it has become unbearable and has cost me everything. The strange thing is there were periods when every symptom has gone into complete remission simultaneously. Looking back this coincides completely with when I go on a low carb diet to lose weight, which I've done five times (the first for weight loss the next 4 to feel well). The same happened again when I went on FODMAP diagnostic diet to try and work out what was causing my gut issues after being told I didn't have coeliac following a negative gut biopsy. In January I started the Autoimmune Protocol diet to try and control the antibodies that had caused Hashimoto's and yet again every symptom disappeared within ten days! I'm currently in complete remission and feeling better than I have in 10 years - I've even gone back to work and my psychiatrist has said she will soon reverse my bipolar diagnosis. The only genuine commonality between the periods on a weight loss diet, FODMAP and the Autoimmune Protocol diet is that all of them are 100% gluten free. I am well enough to actually start researching what's wrong with me (when sick I can't read) and I am trying to establish if the above symptoms could be attributable to coeliac disease. I've read through a number of medical research papers that show that there is a link but these are rare so I would welcome some insight if anyone has experienced similar. I'd love to hear from you. Are there any tests I can ask for (DNA profiling for example)? I had a positive ANA screen (speckled pattern) but this tested negative a week ago since starting the diet and the FODMAP diet result indicated 'wheat sensitivity' diagnosis but nothing more. Due to the severity of my symptoms I will never again eat gluten so any blood test or biopsy will be negative. My doctors are sadly quite clueless.
  16. Celiac.com 04/13/2017 - A team of researchers recently set out to determine whether hospital admission for autoimmune disease is associated with an elevated risk of future admission for dementia. The research team included Clare J Wotton, and Michael J Goldacre, both affiliated with the Unit of Health-Care Epidemiology, Nuffield Department of Population Health, University of Oxford, Oxford, UK. The pair set up their retrospective, record-linkage cohort study using national hospital care and mortality administrative data from 1999–2012. From that patient data, they assembled a study group of people admitted to hospital with a range of autoimmune diseases, along with a control group, and followed forward in time to see if how many patients eventually developed dementia. Data revealed a total of 1,833,827 people admitted to hospital with an autoimmune disease. The number of patients for each autoimmune disease group ranged from 1,019 patients in the Goodpasture's syndrome group, to 316,043 people in the rheumatoid arthritis group. The researchers found that the rate ratio for dementia after admission for an autoimmune disease, compared with the control cohort, was 1.20 (95% CI 1.19 to 1.21). For patients whose dementia type was specified, the rate ratio ranged from 1.04 to 1.08 for Alzheimer's disease, and 1.26 to 1.31 for vascular dementia. Of the 25 autoimmune diseases studied, 18 showed significant positive associations with dementia, 14 of which were statistically significant. Significant associations include Addison's disease (1.48, 1.34 to 1.64), multiple sclerosis (1.97, 1.88 to 2.07), psoriasis (1.29, 1.25 to 1.34) and systemic lupus erythematosus (1.46, 1.32 to 1.61). The connections with vascular dementia may be one aspect of a wider connection between autoimmune diseases and vascular damage. Though findings were significant, effect sizes were small. Researchers advise clinicians to note the possibility of dementia in patients with autoimmune disease. The researchers are calling for further studies to assess their findings and to explore possible ways to reduce any increased risk. Source: BMJ
  17. Celiac.com 03/16/2017 - When screening arthritis patients for celiac disease, should HLA be done before serology? During the past decades, an accumulating evidence shows a dramatic rise in the frequency of autoimmune diseases, including rheumatoid arthritis and gastrointestinal conditions, such as celiac disease. HLA genes have been shown to be strongly associated with numerous autoimmune diseases, including rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA) and celiac disease. A team of researchers recently set out to assess the performance of celiac disease associated serology in face of a rheumatologic patient, when gluten enteropaty is suspected. The research team included Hakim Rahmoune, Nada Boutrid, Mounira Amrane, and Belkacem Bioud. They are variously affiliated with the Pediatrics Department and the Biochemistry Department of Setif University Hospital at Setif-1 University in Algeria. The main question they sought to answer was: Should HLA be done prior to the serology? Could unnecessary serial serological celiac disease screening in such rheumatology patient be avoided by performing an HLA typing, as a long-life marker of genetically celiac disease-susceptible patients? Serogenetic screening without the requirement for follow-up small bowel biopsies provides a flexible, cost-effective methodology that could be widely applied to obtain accurate estimates of the prevalence of celiac disease in large group studies. Source: International Journal of Celiac Disease, 2017, Vol. 5, No. 1, xx. DOI:10.12691/ijceliac disease-5-1-2
  18. Celiac.com 03/18/2017 - Do you have an autoimmune disease? Does someone you know? Did you know that the numbers regarding autoimmune rates are all over the place, and that incomplete or wrong information can result in delayed or missed diagnoses? Want to help researchers create a database that will help them understand exactly how many people are living with autoimmune conditions? Then behold the latest project from ARI, a 501c(3) nonprofit, with a mission "to create a hub for research, statistics, and patient data on all autoimmune illnesses." The project seeks to provide data that will help researchers nail down some basic answers about the numbers of people who live with one or more autoimmune conditions. The ARI website says that the company "operate a national database for patients who suffer from any autoimmune disease." ARI's mission is to "reduce the time of diagnosis, support research, compute prevalence statistics, and establish autoimmune disease as a major class of disease so that it receives the awareness of the public, the attention of healthcare providers, and the appropriate funding needed to improve upon existing treatment protocols and disease management strategies." This is one reason why Aaron Abend, the founder and president of ARI, decided to create the Autoimmune Registry after his mother was misdiagnosed for 10 years because, based on incorrect statistical data, "doctors thought Sjogren's syndrome was a rare disease with only 37,000 cases in the U.S." Today, researchers agree there are probably 3 million cases in the U.S., so not so rare at all. Researchers currently estimate that anywhere from 9 million to 50 million people in the United States have an autoimmune disease. That's quite a wide range. Pinpointing the actual prevalence is part of what ARI will try to do. So, they are reaching out directly to patients to information about diseases like rheumatoid arthritis (RA), lupus, psoriasis, diabetes, Crohn's, celiac disease, Sjogren's syndrome, multiple sclerosis (MS), and many others fall under the autoimmune umbrella. The registry is easy to join. It is free to sign up and consists of a simple survey that people with autoimmune diseases answer. The information that people provide to ARI remains secure. The data may be used to compile statistics and qualify them for research opportunities, but no identifying information will be shared without permission. The hope is that the registry can help researchers connect with people and the data. You can view the registry here.
  19. Dr. Ron Hoggan, Ed.D.

    It's Not Just Me

    Celiac.com 02/14/2017 - In 1999, Loren Cordain, the renowned professor of Exercise Physiology at Colorado State University who has since popularized the Paleodiet, published an extensive exploration of why our cultivation and consumption of cereal grains has been disastrous for the human race, resulting in many autoimmune, nutrient deficiency, and other modern diseases (1). Previously, in 1987, the famous physiologist, Jared Diamond characterized humanity's shift to agriculture as "The Worst Mistake in the History of the Human Race" (2). A year later, medical doctor and professor of Anthropology, S. Boyd Eaton and colleagues suggested a mismatch between the human genome and our current agricultural diet/lifestyle (3). And more than a decade prior to that, gastroenterologist, Walter L. Voegtlin, M.D., self published a book apparently asserting, based on his treatments and observations of patients, that dietary avoidance of cereal grains and sugars, offset by increased consumption of meats and animal fats, is an effective treatment regimen for a variety of intestinal ailments including Crohn's disease, colitis, irritable bowel syndrome, and indigestion (4). Each of these perspectives was informed by a different but solidly scientific approach to human health. The academic field of each of these authors varied from Exercise Physiology to Physiology, to Gastroenterology, to Anthropology. Yet each of these specialist researchers arrived at the very similar conclusion that cereal grains are not healthful foods for humans. Their strident declarations to that effect leave little room for doubt. Dr. Cordain acknowledges that the roots of some of his thinking lie with Dr. Eaton and his colleagues. Nonetheless, there is a convergence here, of ideas and insights drawn from separate bodies of data and investigative approaches. While there is some overlap between these scientific disciplines, they all lead to a clear indictment of cereal grains as little more than a starvation food for humans. These scientists point to myriad signs of illness that arise more commonly when populations make the transition to eating diets dominated by grains, especially when the grains are refined and when they are combined with sugar. One critic of this paradigm is the evolutionary biologist, Dr. Marlene Zuk of the University of California at Riverside. According to Alison George at New Scientist, Zuk asserts that the 10,000 years that humans have been cultivating and consuming cereal grains is an adequate time period for humans to evolve an adaptation to these foods (5). But surely this is a Eurocentric view. Simply because some Europeans have been cultivating and consuming cereal grains for ten or more thousands of years does not mean that the entire world's population, or even all Europeans, would or could have adapted to consuming these foods. Let's look back to see what we currently know about our human roots and how those early humans spread all over the world. A group thought to number about 200 humans left Africa sometime between 85,000 and 70,000 years ago, during a glacial maximum that lowered worldwide sea levels by about 300 feet below current levels. The enormous glaciers of the time so depleted the oceanic barriers we see today, that these bodies of water were made navigable even with very primitive flotation devices. The progeny of this relatively small group of early modern people multiplied and went on to parent almost all of today's non-African people of the world with some 1% to 4% of today's human, non-African genes having been derived from the Neanderthal branch of the hominid tree (6). This predominantly early modern human group's progeny would quickly find its way to Australia, the South Pacific, across Asia, to China, east to the Americas and west across India, finally arriving in Europe, where they would supplant the long-time Neanderthal residents who had survived some of Europe's harsh and inhospitable glaciations but apparently could not survive having our forebears as neighbors. While specific paths and dates for exiting Africa, and worldwide patterns and timing of human distribution remain controversial, most experts now accept that indigenous Australians had arrived there at least 60,000 years ago (6). A similarly recent finding places people in the Americas by at least 55,000 years ago, long prior to the date at which the Bering Land Bridge was thought to be available for human movement from Siberia into the Americas (8). This newer, admittedly controversial date raises the likely possibility that people arrived in the Americas, from Asia, by boats or rafts on which they followed the shoreline east to what is now Alaska, then south of the glaciated wastelands of much of what is now Canada. (Or perhaps they arrived by some other means that we have not yet imagined.) But only a small portion of these early Americans would eat wheat, rye, oats, or barley before the last 200 years or so, especially those living on the Great American Plains, or in the frigid north, the dense jungles or places that were otherwise isolated from the encroaching wave of "immigrants" from Europe and beyond. And none of those aboriginal peoples of the Americas were eating these grains prior to 1492. The epidemics of autoimmunity and obesity that may be seen among indigenous Americans are clear reflections of their recent shift to the gastronomic wonders of foods derived from these European grains. Further, even among Europeans, grain cultivation and consumption had not uniformly spread across most of Europe until, at most, less than half of the 10,000 years that Zuk says would be sufficient for human adaptation. In Britain, for instance, grain farming was only getting under way about 4,000 years ago, and availability of grains varied according to local geographies and economies. Also, in parts of Scandanavia, wheat bread was a rare treat until after World War II. Some Europeans are thought to have been cultivating grains for even longer than the 10,000 years ago suggested by Cordain, but the evidence is contradictory and accompanied by a range of expert opinions. Further, the health consequences of this nutritional path are consistently seen in the skeletal remains of those early farmers, many of which can now be seen reflected among indigenous peoples of the Americas, as they assimilate our grain and sugar dominated diet. Adaptation to eating grains is not a gentle, joyful process. Early farmers may have produced many more children than their hunting and gathering neighbors, but their lives were shorter, their bodies were less robust, with substantial reductions in stature, and they experienced widespread infectious diseases and ailments driven by nutritional deficiencies. By the time grains became a cash crop for many European farmers, cereals were disproportionately consumed by affluent urbanites. Those who were large consumers of cereal grains did not include all Europeans, even where yields were prodigious. In more remote, northerly, or mountainous areas, cereal grains, or foods made from them, were likely a rare treat rather than a daily staple. Jared Diamond points out, that in addition to "..... malnutrition, starvation, and epidemic diseases, farming helped bring another curse upon humanity: deep class divisions." He goes on to argue that only with farming and the storage and accumulation of food can Kings "and other social parasites grow fat on food seized from others". He also presents evidence that farming led to inequality between men and women. Conversely, contemporary hunter-gatherers have repeatedly been shown to be quite egalitarian, both regarding gender and political leadership (9). Roger Lewin is another critic of the health impact of European grain cultivation on humans. He points out that even in the very heart of the Fertile Crescent, where agriculture got its start, there was not a uniform adoption of farming. One agricultural center at Abu Hureyra, experienced two cycles of abandonment, one at 8,100 B.C.E., lasting about 500 years, and another at 5,000 B.C.E. These periods when agriculture at this locale was abandoned are "thought to be related to climatic change that became less and less conducive to agriculture" (10). Lewin also harkens to Mark Nathan Cohen's collation of "physical anthropological data that appear to show increasingly poor nutritional status coincident with the beginnings of agriculture.... " (10) suggesting, again, that grains were a starvation food. Eaton et al also approach grain cultivation from an anthropological perspective, suggesting that increased dietary protein and fats from animal/meat sources likely gave rise to increased stature of earlier humans, along with providing the necessary fatty acids for building larger brains, and allowing smaller gut sizes over the past 2.5 million years. It seems reasonable to assume that if it took our pre-historic ancestors that long to adapt to eating meats and animal fats, the very irregular adaptation period of between less than one hundred years and about 10,000 years that various world populations have been cultivating and consuming wheat, rye, barley and oats would be insufficient to allow full adaptation to eating these immune sensitizing cereal grains. Dr. Zuk's perspective might be tempered a bit if she considers that Europeans and their descendants do not comprise the entirety of the world's populations. There are several Asian populations that are not insignificant when compared with European populations and their progeny, including the residents of China, India, Pakistan, and South-East Asia. Even among those of us who appear quite European, there may be a mixture of genes derived from peoples of any of the other five populated continents. The approximately 10,000 year maximum period since humans began to cultivate cereal grains would have little adaptive impact on populations that have only been exposed to these grains for a period of somewhere between four or five centuries and seven or eight decades, as is the case among the indigenous people of the Americas, Australia, New Zealand, and much of Asia (6). Even if all humans had been cultivating and consuming cereal grains for the 10,000 years since this practice was first begun in the Middle East, the high frequency of intestinal, autoimmune, and other diseases that can be mitigated by a gluten free diet, even among descendants of Europeans, leaves little room to doubt that Dr. Zuk's projected adaptation simply has not occurred. The current prevalence of celiac disease and non-celiac gluten sensitivity identifies, at a bare minimum, between 7% and 12% of the American population that has not adapted to cereal grain consumption. While a few research projects suggest that molecular mimicry and the opioids from cereal grains contribute to autoimmunity, obesity, type 2 diabetes and cardio-vascular disease, current research does not provide any clear sense of how many cases or to what degree these health conditions are driven by gluten consumption. We know that foods derived from cereal grains are often laced with refined sugar, but the insulin stimulating properties of gluten alone are such that their role in these conditions cannot, reasonably, be denied. I feel vindicated by these many experts who decry the folly in humanity's embrace of the European grains. I wonder how long it will take for this information to filter into, and be acknowledged by, those who claim that science has led them to advocate cereal grain consumption for everyone without celiac disease and, more recently, non celiac gluten sensitivity? Sources: Cordain, Loren. Simopoulos AP (ed): Evolutionary Aspects of Nutrition and Health. Diet, Exercise, Genetics and Chronic Disease. World Rev Nutr Diet. Basel, Karger, 1999, vol 84, pp 19–73 http://thepaleodiet.com/wp-content/uploads/2012/08/Cerealgrainhumanitydoublesword.pdf Jared Diamond, "The Worst Mistake in the History of the Human Race," Discover Magazine, May 1987, pp. 64-66. http://www.ditext.com/diamond/mistake.html Eaton SB, Konner M, Shostak M. Stone agers in the fast lane: chronic degenerative diseases in evolutionary perspective. Am J Med. 1988 Apr;84(4):739-49. Voegtlin, Walter L. (1975). The stone age diet: Based on in-depth studies of human ecology and the diet of man. Vantage Press. ISBN 0-533-01314-3 George, A. " The Paleo Diet Is a Paleo Fantasy" New Scientist. April 7, 2013. http://www.slate.com/articles/health_and_science/new_scientist/2013/04/marlene_zuk_s_paleofantasy_book_diets_and_exercise_based_on_ancient_humans.single.html Oppenheimer, Stephen. The Real Eve: Modern Man's Journey Out of Africa. Basic Books, NY, NY. 2004 Fagan, Brian. Cro-Magnon: How the Ice Age Gave Birth to the First Modern Humans. Bloomsbury Press, New York. 2011 http://www.utep.edu/leb/Pleistnm/sites/pendejocave.htm Brody, Hugh. The Other Side of Eden: Hunters, Farmers and the Shaping of the World. Douglas 7 McIntyre Ltd., Vancouver, B.C., Canada. 2000 Lewin, Roger. A Revolution of Ideas in Agricultural Origins. Science. vol 240, May 20, 1988
  20. Celiac.com 02/13/2017 - Researchers have noted a strong clinical association between autoimmune thyroid disease and adult celiac disease. In part, at least, this appears to be related to common genetically-based determinants as well as a common embryonic origin since the fetal thyroid is derived from the pharyngeal gut. Dr. Hugh J Freeman of the Department of Medicine, Gastroenterology, at the University of British Columbia in Vancouver, BC, Canada recently set out to review evidence from earlier prevalence studies and recent population-based studies. Specific phenotypic features have been described if both disorders are defined, including dermatitis herpetiformis, and a greater risk for a malignant complication, including lymphoma, especially if celiac disease is initially diagnosed at a late age. Some phenotypic characteristics of autoimmune thyroid disease, such as orbitopathy, may be an important clue to occult celiac disease. Similarly, patients requiring a high thyroxine dose to treat their autoimmune thyroid disease may reflect another aspect of undetected celiac disease. In some studies, the relationship has also been extended to other phenotypic features, such as dermatitis herpetiformis, and a greater risk of malignant complication, especially if celiac disease is detected in late or elderly age groups. In addition, some phenotypic characteristics of thyroid disease, such as orbitopathy and a high dose requirement for replacement may be added clinical clues to occult or undetected celiac disease. Dr. Freeman recommends that doctors consider serological screening for adult celiac disease in patients with autoimmune thyroid disease. Source: International Journal of Celiac Disease. Vol. 4, No. 4, 2016, pp 121-123. doi: 10.12691/ijcd-4-4-6
  21. Celiac.com 01/31/2017 - In my practice, I have had the pleasure and honor of helping hundreds of people reverse their diabetes and put their autoimmune diseases into remission. One of the many things that we test for is gluten reactivity. The research, much of which has been cited in our book on gluten, Lose the Gluten, Lose your Gut. Ditch the Grain, Save your Brain, clearly demonstrates the connection between gluten reactivity and most autoimmune diseases, including but not limited to: Hashimoto's thyroiditis, rheumatoid arthritis and psoriasis. I intentionally didn't mention celiac disease, because, although it is very well established and accepted that gluten triggers celiac disease, what most don't realize is that those with celiac disease represent only a small percentage of people with autoimmunity that are impacted by gluten reactivity. What's alarming and disappointing to me is how many doctors 'pooh pooh' the concept of gluten reactivity, especially among their chronically ill patients. Because of this disconnect, patients continue to suffer needlessly with chronic diseases that, with the removal of gluten from the diet, would in many cases, clear up or go into remission. Hundreds of my patients tell me that when they told their health practitioner they had eliminated gluten from their diet, the health care worker didn't believe gluten would make a difference, or that since they didn't have celiac disease, eliminating gluten wouldn't help them. All this was said in the face of autoimmune diseases going into remission, or diabetes reversing right before their eyes, following the elimination of gluten from their diet. The issue is that many health care practitioners are just not keeping current with the research. As such, they are inadvertently preventing their patients from truly getting healthy. The additional travesty with this is that so many people look to their health care practitioners as 'experts'. When these providers, who are not 'experts' in a particular subject, (in fact, many are completely ignorant of how dietary changes and supplement therapy can help people thrive) advise a patient against something that the research shows would likely help them, it becomes an issue of negligence and, quite frankly, laziness. One patient in particular comes to mind when I think of this disconnect. I had the pleasure of working with a retired nurse who, in her seventies, had come to me with several medical issues. For purposes of this article, I will refer to her as Mary. Mary suffered with hypothyroidism, which we quickly discovered through additional testing, was caused by an autoimmune disease called Hashimoto's thyroiditis. Interestingly, it is estimated that roughly 90% of the 26 million people in the U.S. that have hypothyroidism actually have Hashimoto's. This is an autoimmune disease in which your immune system attacks and destroys the thyroid gland. The research, and our clinical experience, has demonstrated that gluten will cause your immune system to flare-up and attack the thyroid. In addition to Hashimoto's, Mary also suffered with cardiac arrhythmia and she had a history of blood clots and strokes. She also had a long-standing issue with another autoimmune disease, called pleva, whereby her skin would rash up, itch and scab. Mary was very overweight, and exhausted all of the time. Mary had a full functional work-up in our office and she was confirmed, with testing, to be very gluten-reactive. After working with her for several months, with one very important instruction to go completely gluten-free, she easily lost over 40 lbs (with no additional exercise), her energy increased to the point where she stated she hadn't felt that good in decades, and her arrhythmia and pleva cleared up completely. Her cardiologist was ecstatic and her general practitioner told her to keep up whatever she was doing because she was so healthy now. I hadn't seen Mary for almost 6 months when she emailed me one day to update me on something that had happened with her. She went to a food class taught by a vegan. At the class the guests were told very directly that eating gluten-free was a 'billion dollar hoax' and that eating gluten-free could be dangerous and bad for your health. Mary, even after all of her success, in part from going gluten-free, was suddenly doubtful of her diet. She tested it, and for 3 days brought back gluten-containing foods. She told me she reacted very badly and felt horrible. For Mary, the point was driven home that gluten-reactivity was a very real issue regarding her health. The difference in how she felt was like night and day. Lucky for her, she observed this first hand and immediately went back on her gluten-free diet before her skin disease and arrhythmia flared-up. Whether one is a doctor, a nutritionist, or a regular Joe, making statements about any subject without having researched that subject in earnest, is unethical, and may even be harmful. We have done the research and have seen first-hand, with thousands of patients reversing everything from psoriasis to diabetes, that eating gluten-free, while very 'trendy' right now, is a trend that is solidly backed up by the evidence.
  22. Celiac.com 02/06/2017 - People with celiac disease have higher rates of autoimmune thyroiditis, and vice versa. Both of these common autoimmune diseases share multiple aspects lodging at the two ends of the gut-thyroid axis where the cross-talks' pathways are still unrivaled. A team of researchers recently set out to better understand the parameters for effectively screening patients with either disease for the presence of the other. The research team included Aaron Lerner, and Torsten Matthias of the Rappaport School of Medicine, Technion-Israel Institute of Technology, Haifa, Israel, and with AESKU.KIPP Institute, Wendelsheim, Germany. Many clinicians recommend screening patients with thyroid autoimmunity for celiac disease associated antibodies. However, the wisdom of routinely screening of celiac patients for anti-thyroid antibodies is less certain. Despite the fact that the latter screening fulfills most of the criteria for screening a disease, the timing and cost-effectiveness remains undetermined. For now, in face of celiac disease, the researchers are recommending that clinicians and practitioners keep in mind the higher rates of autoimmune thyroid disease in the interests of making timely and accurate diagnosis. Read their full report. Source: International Journal of Celiac Disease. Vol. 4, No. 4, 2016, pp 124-126. doi: 10.12691/ijcd-4-4-10
  23. I recently tested positive for Yersinia Enterocolitica. My doctor mentioned there is a correlation between this and the onset of autoimmune diseases. Has anyone had this? And if so, how did you treat?
  24. I am currently searching for a Doctor that can help me monitor multiple health issues. I have Celiac Disease, Hashimoto Thyroid, Vitiligo, and Pernicious Anemia. I am looking for Tri Cities, WA, Walla Walla WA, or Spokane, WA. I need someone who understands the complications each of the diseases can have themselves as well as the potential combination of issues. Someone who will monitor my bloodworm etc. but can think in gray, not just black and white. I take Levothyroxine and have had monthly B12 injections for about 16. I take Vitamin D supplements to keep the level up. I take numerous other supplements and have been on a strict gluten-free diet for 41/2 years. I do have other food allergies too. I do not absorb Iron well at all and have had a Hematologist monitor my Ferritin etc. It began about 6 years ago. I was having trouble with a constant dry cough and was sent to a Pulmonologist, who determined I was not getting enough oxygen to my lungs. My PCP did a lot of blood work and found I had a Ferritin level of basically 0 and Hemoglobin of 5.5. Tried mega Iron supplements with no change in level. The doctor told me to throw them away and had me begin Iron Infusions She helped me get it leveled out after a few years and now I don't need them as often. The Hematologist was the one who suspected Celiac Disease and sent me to be tested. (Please note I had been scoped up and down numerous times, swallowed a camera and still the Gastro could not find anything wrong. Never did a biopsy. He attributed my issues to IBS....) About a year ago my most excellent Hematologist left the practice and moved far away. She was very intelligent, keen, and thought outside the box in many ways. I could count on her to test, evaluate and analyze my bloodwork. She was an excellent communicator and would research for additional information. It is difficult to explain how comfortable I was with her managing my care. I no longer feel that way and for the last year my Ferritin has been between 8 and 10.8 and the Saturation has been hovering around or below the low level. And I have not had any infusions. Thank you!
  25. Celiac.com 10/13/2016 - Researchers don't currently know much about rates of celiac disease autoimmunity or tissue transglutaminase autoantibodies (TGA) in patients with type 1 diabetes (T1D) and autoimmune thyroid disease (AITD) in the Chinese population. A team of researchers recently set out to assess rate of celiac disease autoimmunity amongst patients with T1D and AITD in the Chinese population. The research team included Zhiyuan Zhao, Jing Zou, Lingling Zhao, Yan Cheng, Hanqing Cai, Mo Li, Edwin Liu, Liping Yu, and Yu Liu. The study included 178 patients with type 1 diabetes, along with 119 with AITD where 36 had both T1D and AITD, classified as autoimmune polyglandular syndrome type 3 variant (APS3v). The study also included 145 patients with type 2 diabetes (T2D), 97 patients with non-autoimmune thyroid disease (NAITD), and 102 healthy control subjects. The team used radioimmunoassay to measure serum islet autoantibodies, thyroid autoantibodies and TGA. They found TGA positivity in 22% of patients with either type 1 diabetes or AITD, much higher than the 3.4% seen in T2D patients (p< 0.0001) the 3.1% seen in NAITD patients (P < 0.0001) or the 1% seen in healthy controls (1%; p<0.0001). Thirty-six percent of patients with APS3v who had both T1D and AITD positive for TGA, significantly higher than patients with T1D alone (p = 0.040) or with AITD alone (p = 0.017). At diagnosis, T1D and AITD showed overlap frequencies of 20% and 30%, respectively. Chinese population with existing T1D and/or AITD shows high rates of TGA positivity, which are even higher in people with both diseases. The study team recommends routine TGA screening in patients with T1D or AITD will help to identify celiac disease autoimmunity early on, and will yield better clinical patient care. Source: Plos.org
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