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Found 174 results

  1. Hi all, new here and am hoping for some advice or to hear from people with a similar experience. In brief I have been having gradually worsening symptoms for about 6 months (but have been avoiding over eating wheat based products for about a year due to being suspicious after having minor problems). 1st noticed when I have certain foods, feel terrible the next day, tummy upset, gas, nausea, bloated feeling and general feeling of being unwell. Example being Veggie Sausages at the Café, Pasta, Digestive Biscuits. The latter gave me a tummy upset for 3 weeks before I realised what it was and stopped eating them. About ten days ago I had a wrap and a sandwich the same day and by the evening I had stomach pain + upset tummy, nausea and generally felt absolutely terrible. I then made a terrible mistake a few days later and had fish and chips and had the whole upset again but this time more tummy upset the next day. I don't think I had recovered from the previous incident as I have had fish and chips in the not to distant past with no problems. I went to a 'walk in doctor' as I work away from home during the week to have a chat and see if they can provide any advice. After explaining my situation the doctor focused on the change of bowel habit and my age and advised me to see my GP with a view of arranging an colonoscopy. Now I will not ignore this advice of course and am rather stressed over all this as I went in being down about the possibility of having Celiac and came out feeling even more stressed and worried I may have cancer. I am just wondering if anyone else has had such an experience with either Celiac or perhaps wheat intolerance. Why is it some foods, like the 'wrap' or 'digestive biscuits' that have such a terrible effect on me? Other's like a sandwich on it's own, maybe just a bit of bloating. A bit of history, I am a 52 year old male, medium height and build, not overweight. Hypothyroid and medicated for that for last 20 years with no issues. I also have some Vitiligo (only mentioned as it's also an auto immune 'thing'. I also have Barrett's esophagus and my last two scopes have been clear for any progression of any kind. I am due again at the end of the year (year 3) but will ask to go back early. One last point, I woke up the day after the 'wrap' incident with a dull pain/ache on my right side, lower belly. I can remember having this before on occasion on waking. Is this where something gets swollen from wheat intolerance by any chance? Regards to all, sm
  2. 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?
  3. I hope not to make this long but I am in dire need of advice. I have been having these episodic seizure and stroke like symptoms. It starts with my eyes fluttering. I typically slump over. My legs work but I can't lift my head. Sometimes the left side of my face goes numb. I am completely unable to think or speak. It's like my mouth won't move right. If I can move my hands/arms, then I can not write or text. I also have difficulty walking (the leg I broke in a car accident gets really tight) This happens when I wake up, at work, walking, in shower, and sometimes in mid conversation, and once while driving (don't drive anymore). I've been to many doctors. Some nerve in my neck is crooked or slightly blocked. Referred to neuro. He thinks its a seizure. Long story short after several EEGs, MRI's, an MRA, and blood test they find: white spots on brain (unusual for age), positive western blot for Lyme (IgG), negative EEG, negative MRA. No strokes. negative spinal fluid. negative for lupus. Later, negative for Lyme on a C6peptide test. took Topamax and that stops migraines I was having, but not the episodes. referred to psych. she says no mental health issues after examining me. continue to see her because I'm so stressed about not feeling well. My general diagnosis is complex migraines. At some point I had a seizure like episode and was diagnosed with a complex partial seizure, but that was changed after the EEG's. June 2013: Go alcohol and gluten free. Then just gluten free. Miraculously I had no episodes for a week. After 2 weeks my hands and feet aren't numb. Oct 2013: Celiac panel is negative. My red blood, iron, and hemoglobin are all very low Now: Despite being gluten free, I find that I constantly get "glutened" by little things (bun accidentally left on my burger, corn tortillas that aren't really gluten-free, medicines etc) . One glutening can result in multiple episodes. The longest I've gone is a week and a half without episodes. Before June I had them everyday multiple times and they were very severe. I can't find a doctor that will answer my questions to save my life. I live near NIH, so you would think there are plenty of intelligent docs here but I have been largely unsuccessful. I like to work hard and I am ashamed at my performance (work and school) because I have these uncontrollable episodes. Does anyone struggle with this? What doctor did you go to? Have you been able to get anything other than "don't eat gluten"? Are you able to get a diagnosis?
  4. Hello all, So, long story short, in 2011 I started getting really really sick, with no discernible cause. Violent vomiting daily, rapid weight gain (40 pounds in one month) unbelievable exhaustion, depression, social anxiety to the point of not being able to leave the house, hives, acne, rashes, brain fog, and my LEAST favorite, the all-over bruised body feeling you get when you have the flu (that horrible bone deep aching that makes it uncomfortable to move at all, and any clothing touching you hurts.) Oh, and monstrous swelling of my face and stomach. I wound up figuring out through elimination of certain things in my diet that what was doing it was gluten and dairy. So, over the years I've cut them out (at first, after I cut them out, I was still getting horrendously sick, just less often and it took me too long to realize CROSS CONTAMINATION WAS A THING) So fast forward to now, I'm able to function like a human again by being INCREDIBLY strict with my diet and making almost all of my food myself and NEVER taking any chances with anything that was "processed in the same facility with..." etc etc I've also recently started going back to school, which means I have to be EXTRA careful, or I won't be able to attend classes or study because my brain, and my body just don't function when I've been exposed. However, I've always been a do it yourself girl, so after having endoscopies and colonoscopies years ago, and having a doctor tell me I had "acid reflux" (way to diagnose the symptom, not the cause, ya jerk) and having no doctors know why I was getting so sick, and eventually figuring it out myself, I never was tested for Celiac's Disease. So obviously, I'm scarred for life, and terrified to death of gluten and I was wondering; does anyone know of some way that I could be tested for it WITHOUT exposing myself to it? Thank you so much in advance
  5. Celiac.com 08/22/2014 - It is often hard to tell if isolated case reports have anything to contribute to the larger understanding of celiac disease. However, some case reports are enough in themselves to cause reflection, whatever their contribution to the larger scientific understanding may be. For most people with celiac disease, symptoms disappear and healing begins with the adoption of a gluten-free diet. For one 9-year-old girl, however, the battle to beat her symptoms and feel better did not end with a gluten-free diet. The girl had initially complained of non-specific abdominal discomfort, and showed positive blood tests for celiac disease. Duodenal biopsies revealed Marsh 3B histopathology. So, she definitely had celiac disease with corresponding symptoms. Despite following a strict gluten-free diet, the girl continued to have symptoms and show positive blood tests for active disease. Gluten is a common additive in plastics. After some detective work, the team discovered that the child was being exposed to gluten from her orthodontic retainer that contained a plasticized methacrylate polymer. She discontinued its use and her symptoms disappeared and her celiac blood tests returned to normal. This case illustrates that, even for patients on the strictest gluten-free diet, exposure to non-dietary sources of gluten, such as those used to make plastics, dental equipment, and cosmetics, can trigger or exacerbate celiac disease symptoms. This case also emphasizes the importance of ferreting out and removing all possible sources of gluten, including non-dietary, when managing celiac disease. Source: Clin Pediatr (Phila). 2013 Nov;52(11):1034-7. doi: 10.1177/0009922813506254.
  6. hi All, I had been getting so gradually sick that I don't know when it started, (but I am now assuming 1994). In 2008, I succumbed to pressure from my insurance rep to get more insurance, and they would even come to my house to test my blood. I was denied insurance and recommended to see my doctor, who told me I had the liver of a severe alcoholic. I very rarely drink. I went for tests and the doctor was baffled. He said I should lose weight. He said it was likely fatty liver disease. That was 2008. For the next few years I got tests, tried to eat healthy, and every so often I would see if it was helping my liver numbers. I got stomach aches when I ate toast or a sandwich, but didnt link it to the toast except later, in hindsight. How could toast give me a stomach ache? Anyway, on the advice of my doctor, I tried very hard to lose weight, so went lo-carb. One day, I had had no breakfast and at church 'goodie-time' was unable to resist all the carbs. Later that afternoon, I felt like someone had literally poisoned me. This was now 2011. I decided to not eat or drink anything but almonds and organic cold pressed apple juice in a glass jar, and ate only those things for the next 3-4 days while I looked for symptoms on the Internet. I narrowed it down to celiac disease and went to the doctor. I refused to eat gluten to get the test. I decided not to eat gluten and I got better. I then started a job in China. I learned how to say things like "no soy sauce" since it's made from wheat. I got so much better. I knew what my reactions were to gluten, especially the one that happened first: I would get a shakiness inside, like my blood system was micro-vibrating. i got the flu and was in bed for three days straight eating only mandarin oranges and water. After a couple of days, I got that shakiness, suddenly, lying in bed. I was astounded, cause I had only water and oranges. Then I remembered that I had taken two Advil, in the gel cap form. I looked on the Internet, and sure enough, the gel caps contained gluten. Wow. Even that small amount in two gel caps set it off. I was very vigilant. Then one day, back in Canada, I was making hot dogs for a four-year-old and I had fresh bakery buns. I couldn't resist. I guess I thought, well, it's been a couple of years gluten free, let's see what happens. I ate one and a half huge bakery hot dog buns on impulse. Big mistake. I got so, so sick. I was sick for 6 weeks with various symptoms. Spleen pain, liver pain, kidney pain, migraine headaches, stomach issues, constipation, dizziness, brain fog, irritability, etc. This was 2013. After one week of still being sick, I thought it's probably too late, but I should get that celiac test to see if there are detectable antibodies. I went to the doctor, who didn't think it was necessary and insisted it was fatty liver disease and not celiac. He humoured me and gave me the requisition anyway. It wasn't too late! One week later. i was shocked to see that my antibody level was 99. ( If you have less than 20 you don't have Celiac. It is called tTg test). If you have 100, they say you don't really need a biopsy and it's pretty much confirmed celiac. The doctor was a little bit embarrassed and said, "looks like you've diagnosed yourself". So finally he shut up about fatty liver disease. I got so much better living in China. I occasionally slipped. I then went back to canada for a year. I developed DH, as I got these lesions starting on my thumb and then on my fingers and palms. Finally after 6 months I cut out dairy. I had heard it was also somehow bad for Celiacs from the Internet but I really didn't want to cut out dairy as it was bad enough without gluten. I finally did and the DH cleared up. Then back to China. I would go back to Canada twice a year for the time off from spring and summer holidays. It was really hard to be around western food temptations and I would get "glutened" even though I tried hard. I began to get a strange pain in my leg and the doctor in canada said it was likely arthritis in my hip. i went for an xray but it didnt show anything. it really killed me to get that pain in my leg and then in my hip. i would cry out and have to sit down. i started riding my bike to work in china cause it was painful to walk very far. I had started to reintroduce dairy while in China and found that I could eat yogurt, which I love. I had heard that people blamed their gluten reactions on Roundup, or glyphosate, because they could eat flour products in other countries but not North America. One day about six months ago I made cookies for my students. I wore gloves and was very careful. Before this, I wouldn't even be in the same room with flour. But nothing happened. Then I tasted a cookie. Nothing happened!! The next day, I ate a whole cookie. Nothing happened!! I began to think there was something to the theory of North America and roundup. I still avoided flour in general cause I didn't want to push it, but I started eating soy sauce and relaxed a bit - started going to restaurants in china, etc. instead of micromanaging food in my kitchen, cause I was evidently not reacting to gluten in China. I then realized that the only episodes of pain I had had were when I was in Canada the previous summer and spring. Very strange. So. I got back to Canada, last spring, had my usual gluten free meal on the airplane, and then visited my mother. I ate only organic yogurt. Nothing else, and a few hours later I was attacked by almost every gluten related pain I had ever had. My hip was suddenly shooting pain and I cried out and limped to the couch. My mother asked, what did you eat? I said, nothing! Only organic yogurt! Of course after any glutening, it takes weeks for these pains to subside, and I endured pain stabs in my spleen for a while. Then back to China, where I was able to eat normally. No pains, nothing. I ate yogurt, made myself with uht milk imported from Germany or Australia, and I was fine. Until the day when I ate one of the chocolate bars I had brought from Canada as prizes for my students. Instant reaction! Spleen pain! I had heard that sugar cane was as bad as flour for being drenched in roundup. Now I was convinced. It was definitely stuff from Canada that was the culprit. Only farm products. Yes, they say the yogurt is organic, but I'm sure they feed the milk cows hay that has been exposed to roundup. Now I know exactly what I can eat and where. I love the food here, and it's safe. There are exceptions. They use pesticides on fruit, cause I get a stomach ache when I eat certain fruits, but it's a different reaction that the gluten reaction, I can eat flour products without a huge reaction, but I still have celiac, because I do get reactions even from Chinese flour, just not as bad as I did before. A mild sick feeling, like something is off, kind of unbalanced, and of course the inevitable shakiness. I react much worse to Canadian chocolate. But there is a huge difference between food here and food there. A very painful difference. Hard to figure out, but I think I have. so here's my theory, roundup actually causes the celiac disease, or whatever disease you might happen to be genetically susceptible to. (My uncle has arthritis in his hip). If you keep ingesting it, you will get gradually sicker and sicker and get some kind of disease. If you stop eating roundup completely, you will heal with a healthy diet. If you already have a disease like celiac or DH you can manage it and stay healthy if you are totally roundup free. My dad died of nonHodgkins lymphoma and he insisted it was the roundup the neighbor had been spraying on his farm, right next to my dads organic hobby farm. Now I believe him. I wish I'd been able to piece this together a bit earlier. Since 1994, many diseases have hugely increased. That's when they started with the roundup and there is a one on one correspondence on the graphs with roundup use and many diseases. sorry for the novel but I just can't keep this all to myself, I'm like the canary in the mine. But roundup is everywhere so I don't know if you can really avoid it in North America, sadly. My advice is to move elsewhere and figure it out like I did. i saw a youtube video by an MIT researcher that they are now figuring out that glyphosate actually takes up the place of the essential amino acid glycine in your body. Because they are molecularly similar, glyphosate gets in there and stops glycine from being able to do it's job in your body. So it causes all sorts of problems in a gradual way and eventually you will have trouble. i hope this helps! Stay away from farm products! I hope it's not true what the conspiracy theorists say (that they are spraying chemicals, chemtrails etc. I don't know if they are spraying roundup) but if it is, that's the end of the world as we know it. I don't really want to go there, I just know what I know and I'm sharing it. this is just the short version but I've tried to include important info. Anyone else have a similar story in any way?
  7. I tend to get bruising frequently on my upper legs/hips. I've always assumed it was because I'm pretty clumsy but they're in a spot that doesn't match door knobs or my desk even. The most recent bruise has popped up in the last day and I know that I've been especially careful so I'm not sure where it's coming from. They are on the same spot on both my left and right legs. Does anyone else have a problem with frequent bruising? Especially in the same spot?
  8. I'm a 30 year old female. All of my life I've had extreme bloating after eating. About 4 years ago I started having upper stomach pain. It's dead center below my rib cage where the diaphragm is located. As the years have passed the pain became more intense and more frequent until it was daily and affecting my ability to function. I had 2 drs say it was gastritis but prilosec did nothing to help. My head got to where it always hurt and I was exhausted constantly. If the pain and head fog wasn't already enough my joints started to hurt and swell making it hard to get out of bed. I'm 4ft 11 inches and was 130 pounds and my blood pressure was staying 160/105. I've always suffered with spells of constipation then episodes of D. I was getting mouth sores and had random rashes and itching mostly on my legs. I've also suffered anemia. When my stomach pain is at its worst I have foul smelling stools. All my liver and pancreas testing have come back normal. I tested negative for h pylori but am currently on carafate for ulcers. I'm going for another gallbladder ultrasound in 3 days as 9 years ago the ultrasound showed sludge so the dr is wanting to recheck. I've done research for a while now on gluten and have cut it out for over a month. I have noticed a significant improvement since stopping it and only have flare ups if I accidently consume gluten. So my question is does this sound like anything you've experienced and been positive for celiac? I also have numbness and tingling in my feet and hands
  9. I'll try to give a brief history before I ask my question to give some context. About two and a half years ago I noticed myself feeling "unusual" after eating meals, particularly lunch. I would nearly faint or my vision quickly black out over a second or two after standing in particular that sent me to my primary care, thinking I had developed orthostatic hypotension at only 29 years old. Ran MRI and CT of my brain, and MRA of my carotids, did some labs, and all was well so he pretty much wrote me off. A few months later and the left side of my body from face to toes would feel weak and burn (but without actual weakness) in sudden bouts lasting a couple hours. Naturally I freaked out and went to the ER thinking in having a TIA, again at an unusually young age. Well everything was normal. This got worse and lasted longer, and when my foot began to get "floppy", I sought out a neurologist. He did some basic labs which were normal and an EMG that was borderline and thought I had CIDP. I sought a second opinion with a university neurology department, had a lumbar puncture and MS protocol MRI including down my spine, all normal, told I had idiopathic small fiber naturopathy. Sought a third opinion (now just over two years have elapsed since seeing my PCP due to long follow-up intervals) from a neurologist that's double board certified in this area, did a thorough lab workup, and DGP IgG was very high (otherwise the celiac panel was normal), and everything else under the sun was normal. He said "looks like you got celiac disease. Better clean out your pantry." By this time I thought I was losing my mind, my whole body would feel like hellfire for hours a day and my feet flopped and my hands dropped things randomly. After about a week of a gluten free diet the burning was 75% better. I accidentally ate a chik-fil-a sandwich driving home late 3 weeks into it, not thinking until after I ate it. My gut felt like something was ripping it open and my body burned for 5 straight days. Never forgot again. Also pretty much confirmed the diagnosis since I'm still waiting on my upper endoscopy. So the question is this: do those of you with celiac neuropathy tend to have random sudden onset of numb or weak sensation on the whole of one side of your body, that switches sides, even on the same day? Lately my cheek around my left side of the lip and my left side of my tongue got numb too. I ask my neurologist these things whenever I follow-up and his answer is always "small fiber neuropathy causes all kinds of weird symptoms". I know what peripheral neuropathy is supposed to present as, but these autoimmune neuropathies don't seem to follow any rules. By the way, the burning and orthostatic hypotension are pretty much gone now on a gluten free diet for 5 months. The feet ate still floppy though.
  10. I was diagnosed 2 yrs ago. I have been gluten-free since, through these 2 yrs I have had minor issues with gluten through what I believe has been cross contamination. 2 days ago I had one chicken wing and the after it was hit wrenching stomach cramps, shaky, cold and clamy, lot's of bathroom trips and throwing up. What I wasn't expecting was the joint pain and body aches. The foggy brain is awful, I am not sure what is normal because this is my first serious gluten poisoning experince. It is day 3 and I still have diarrhea and feel like throwing up, and feel shaky and felt like I was going to faint at one point, also I haven't eaten other 1 apple and some water. The worst part of this is that I have 2 kids and my husband is not supportive he thinks I need to force my self to eat get out of bed and get over it like you would a cold or a flu. I am so tired and I am not craving food, is this normal? And does anyone else deal with non supportive family members who don't get how huge and serious this is????
  11. Hello everyone! I am new here. I went to urgent care for nerve pain last week (hands and feet going numb, tingling, burning etc) My doctor did not want to see me and told me to go to urgent care. I thought the pain was caused from my back because I have a ton of back problems. Anyway, at urgent care the doctor asked if I have celiac disease. I said "No but my grandma does." she straight up said "you have it." no tests nothing, but she has it and said my symptoms reflect the disease. Anyways it makes sense to me and I think I might have it. I have a lot of symptoms and I would like others input. Here is a list: I am a 24 year old female. I am average weight and height. Migranes every day since I was 14. I had to get a cat scan after I fainted in class. They found nothing and put me on meds that didn't work. When I was 15 I had anemia. At 16 I was vitamin D deficient. I got blood work done a few months ago and no longer have anemia After that I had terrible anxiety and depression. Put me on meds that didn't work. Back problems for no reason (started when I was 18) herniated disk, multiple bulging disks, my disks are loosing fluid, scoliosis, Stomach problems, 2 years ago I started to feel nauseous every day, worse in the morning, I'd dry heave every morning or puke. Some days I'd puke up bile. This is still going on. They ran tests on my liver (high liver enzymes and fatty liver) and a gallbladder test, came back normal. I go poop 5-10 times a day. The stool is always loose. Once in awhile it is solid. Sometimes I go so much, when I wipe I start to bleed and it is painful. I have 3 breaks at work, I go before my break and right before it ends. Its embarrassing. So some days I go number two at work 6 times in one day! I always feel like I am on my period, I have skinny days where I can wear a size 9 but somedays for no reason I swell up and my size 11 pants are tight and hurt because my pelvic area is tender. I had an ultrasound, they found one cyst. A few months back I lost 15 pounds in two weeks, I could barely eat I felt so sick all the time. Then a few months later I gained 20 pounds in two weeks. I till wasn't eating. I went up multiple sizes and it just hurt. I never have an appetite. I started to get a random rash, my scalp itched, my knees and my elbows. It went away it was just weird. It lasted about a month and my doc said it was ecsema. Now I can't loose the weight. I am vegetarian, tried working out but can't loose anything. (by working out I mean walking. I literally don't have energy to do anything else) I get puffy eyes. Bad allergies, and sinus pressure every day of my life. On allergy meds that kinda help. I noticed a lot of these symptoms get worse after I eat gluten. I just started keeping track after the doctor mentioned this. I also have just been getting nerve pain, my arms and legs cramp up, my feet cramp up and get stuck, my hands and feet go numb, tingle, and BURN. I am tired all day every day even if I sleep 10 plus hours. Everyday I feel like I lifted weights and did full body work outs and everyday I feel hungover even though I did not drink any alcohol. I get tired from folding laundry and can barely function. All I want to do is lay in bed. Some days I drink 5 cups of coffee and an energy drink and I'm still tired. I also have brain fog and bad memory problems lately. I am messing up at work with the way I feel. I literally feel like my body is telling me something wrong. Sometimes my body aches so much I think I have fibro or (cancer) thats really how bad I feel. One day after my legs were cramping all day I had weird red patches all over my legs. I was freaked out. Any input would be great. Of course having celiac would suck but I feel so bad every day an answer to my problems would be amazing. I can't keep living like this. I noticed after I eat gluten, about an hour after, I feel depressed for no reason. Sometimes I cramp up and my stomach is tender. I don't know what to do.
  12. Celiac.com 03/08/2018 - A team of researchers recently set out to study delays in diagnosing patients who have biopsy-proven celiac disease with gastrointestinal complaints, compared to those without non-gastrointestinal complaints. The research team included Marco A. Paez, MD, Anna Maria Gramelspacher, MD, James Sinacore, PhD, Laura Winterfield, MD, and Mukund Venu, MD. They are variously affiliated with the Division of Gastroenterology, Department of Medicine, Howard College of Medicine, Washington, DC; the Department of Medicine, the Department of Public Health Sciences, the Division of Gastroenterology, and the Department of Medicine at Loyola University Medical Center in Maywood, Illinois. The research team first conducted a medical chart review of 687 adult patients diagnosed with celiac disease. All patients they studied had biopsy-proven celiac disease and were grouped according to presence or absence of gastrointestinal symptoms before diagnosis. The team found 101 biopsy-proven celiac patients that met their study criteria. The groups were roughly equal in size, with 52 patients showing gastrointestinal symptoms before diagnosis, and 49 with no gastrointestinal symptoms. The results for the groups were starkly different. Statistical analysis revealed an average diagnosis delay of 2.3 months for the group with gastrointestinal symptoms, while the group that showed no symptoms showed an average delay of 42 months. That’s a difference of nearly 3½ years. Nearly half of the patients with non-gastrointestinal symptoms had abnormal thyroid-stimulating hormone, as opposed to 15.5% in the gastrointestinal symptom group (P = .004). Nearly 70% of patients without gastrointestinal symptoms had anemia, compared with just 11.5% of the group with gastrointestinal symptoms. Also, nearly 70% of patients in the non-gastrointestinal symptom group showed abnormal bone density scans, compared with 41% in the gastrointestinal symptom group. The team saw no sex differences on chi-squared analysis between the 2 groups. Although there is growing awareness of celiac disease, the delay in diagnosis for patients without gastrointestinal symptoms remains prolonged, with an average delay of 3.5 years for celiac diagnosis, compared with just over two months for those with symptoms. Clearly, more needs to be done with regard to diagnosing celiac disease in patients who show no symptoms. On the upside, researchers are currently working on ways to better diagnose celiac disease via faster, more accurate tests, even in patients who have already gone gluten-free. Source: PlumX Metrics
  13. Beginning a few months ago, I thought I was just gluten intolerant. Then I started to really question what was wrong with me. Since I was a baby, I had intolerance to dairy. They would make us drink milk at school, and they (the government, basically) told us it was essential to our health. Yet, I was always in the health room after lunch in pain. Everyone thought I was faking it because I didn't like being at school. It wasn't until I entered high school that I diagnosed myself as lactose intolerant. I never had those stomach aches, gas, etc. again as long as I didn't consume dairy. Since I was 20, I lost a lot of weight. My BMI is 19.0, but it was 18.2 when it first happened. To maintain my weight, I don't exercise, and I overeat. This is not how things are supposed to be! I miss working out! I don't like worrying about eating when I don't want to. I'm pale, I'm cold, I can't sleep because I get a pins-and-needles feeling all over my body, sometimes I'll lose feeling in a toe, I've been told I look unhealthy, or like a ghost, I have no energy anymore, my anxiety, anger, and other mood issues are through the roof. I developed borderline personality disorder (ironically, probably, and partially stems from the emotional neglect of my parents about my physical and mental health for all those years. Saying it's all in my head, etc. I actually cried 3 times today, first time in months. My mom doesn't believe anythings wrong with me. I stayed up all night interpreting my DNA results to try getting her to believe me. We've been fighting all day. She always tries to minimize my problems and calls me a bypochondriac). My hair is becoming finer and possibly even thinning. I was diagnosed with ADD, bipolar, and psychosis. At about 17, I developed acid reflux - lots of throat-related issues like clearing it a lot, and post-nasal drop. All of this happened at the same time, basically. About 1 year ago. I had a genetic test done. There are two haplogroups related to celiac, I have the HLA DQA1 version (the most common). There are 13 (I believe) SNPs related to celiac disease. I have 12. My cousin had a similar issue and did NRT. And she's never felt better. They didn't give her diagnoses but told her to watch her dairy intake. What are your thoughts? Is it safe to assume I have the disease? I want to be myself again, but I don't know how to do that unless I know what's causing the problem. And please please please don't tell me to see a doctor, because some of us can't afford it, nor can we afford putting another medical issue on our profile. Thank you!
  14. Hi, im just wondering how long you all waited for your results for endoscopy biopsy? I rang the lab today and apparently they have already been sent to my gp! That seems really quick to me! Also what were your symptoms? i went gluten free about 10 years ago. Was having stomach issues. Did every test but the endoscopy (I chickened out). Fast forward stomach issues returned. So return for a bunch of tests. Got diagnosed with Hashimotos. So Doc recommended confirming celiac. Gluten challenged. Omg that really sucked! Crippling pain, tired all the time. Toilet drama, I looked pregnant, so much so that people actually asked! So bloated! Gong to Gp tomorrow...
  15. I've recently been to my GP 3 times in the last 2 weeks. It started with a rash on my side that was diagnosed as shingles. About 5 days later, a different extremely itchy rash developed on my thighs, buttocks, lower back and biceps. Small red and raised, but would become hive like once inflamed. I went back to the GP one more time where they prescribed prednisone until I could see the dermatologist (tomorrow). I've never even considered this being celiac as I don't have any digestive issues outside of diarrhea after lunch which I've always attributed to coffee consumption. Just trying to gauge the possibility for celiac going into tomorrow's tests. Thanks
  16. Hey there, I'm new! I've spent quite some time on this site reading up and thought I'd ask the experts. In end of November I started experiencing symptoms (toilet and gas focus) which in January really started escalating enough to send me to the doctor. I explained my symptoms and got a blood test and results about 10 days ago. My 'Deamidated Gliadin IgA was high at 31 U/mL (normal being <15) while the other results were all normal. Doc told me to go to GI for endoscopy, although stated this isn't a 'huge' increase. Meanwhile my symptoms started escalating to the occasional vomit, massive fatigue and feeling like I would collapse while walking to work. I'm reading a lot about this now (though still don't feel knowledgeable at all), and I'm wondering 1) does this number give any indication of celiac as a stand alone? No family history. 2) Is it possible that if it could be celiac, that it can happen so quickly? It just seems to be so sudden so I'm quite confused. I'm seeing the GI next week for next steps. It's just been a tough couple of weeks and I don't seem to get much help from the GP. Any tips would be appreciated!
  17. 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
  18. Hi everyone. I'm 24 and have had digestive issues for years. After a endoscopy/colonoscopy with still no results, I decided to try and eliminate some foods myself to see if I could solve the problem. I tried dairy in September, but after not seeing much of a difference I reintroduced dairy (without any issues) and took out Gluten, starting October 31. I read the recommended test period is 3 weeks, so after 3 weeks with little results, I reintroduced gluten back in on Wednesday, Nov 22 (it the 26th now). I didn't have any reaction Wednesday, Thursday, or Friday, but on Saturday I didn't have much of an appetite and started to have D later in the afternoon that's still going into this morning. I guess I'm trying to determine whether I ate something that didn't agree with me or if this is a late reaction to eating gluten. From your experience, is it normal to not have any sort of reaction until a few days later? Keep in mind, I don't have celiacs, I was seeing if I have an intolerance. Thanks!
  19. Celiac.com 11/25/2017 - We have long known that gluten intolerance, both celiac disease and gluten sensitivity, are highly associated with neurological symptoms. Migraines, ataxia (unstable gait), seizures, schizophrenia – the list is long. But a recent research study just published last month sheds some new light on exactly what the mechanism may be. Understanding why these debilitating symptoms occur as a result of a gluten intolerance will, hopefully, go a long way toward increased awareness among the lay public and clinicians alike. It is certainly true that too many millions of Americans suffer the effects of a gluten intolerance unknowingly. They only know that they feel unhealthy but have no idea that gluten is the culprit. The digestive tract is sometimes called the second brain. Some say that is because it is second in importance to the brain. After all, if the food that is consumed doesn't turn into fuel that can effectively feed the 10 trillion cells in the body, those cells will be unable to perform their job and keep the body healthy. In fact, poor digestion is absolutely linked to poor health and increased onset of degenerative disease. This article in Current Pain and Headache Reports looks at another possibility for naming the digestive tract the second brain, and it simply stems from anatomy. The digestive tract actually has a ‘mind of its own'; more correctly, it has a nervous system of its own, called the enteric nervous system. ‘Enteric' simply means having to do with the intestine. This nervous system, according to research, is very similar to the brain housed in the head in that it is bathed in similar chemicals (called neurotransmitters – which, interestingly enough, are mostly produced in the gut!). It sends and receives impulses and records experiences and is influenced by emotions. Some proof of the latter: Have you ever been nervous and had diarrhea? This particular study stated that experiencing ‘adverse events' created a state of hypervigilance (a state of being overly responsive - not a good thing) in the nervous system which was associated with migraines and IBS. Such ‘hypervigilance' was previously only associated with the central nervous system – the one attached to the brain in the head. This group of researchers suggests that the initiation of hypervigilance may very likely lie in the enteric nervous system also. What this means is that if the small intestine is genetically sensitive to gluten and gluten is ingested, it could set off a nervous system response that could create disabling diseases, such as migraines and IBS, but likely others as well. The take-away message is that it is truly critical to diagnose gluten intolerance as soon as possible. Once that hurdle is surmounted it then needs to be followed with a program of nutrition, lifestyle and diet that will ensure healing of the small intestine and a ‘calming' of the hypervigilant nervous system. You may sometimes hear this referred to as healing a leaky gut. Here at HealthNOW we often see this clinically in patients who seem intolerant to many different foods and can't seem to enjoy stable improvement of their symptoms, even after they eliminate gluten from their diet. The reason for this insufficient improvement is that a comprehensive follow-up program is missing – a program that addresses what we call the Secondary Effects of Gluten. This entails evaluating for any other food sensitivities, cross reactive foods, a tendency towards autoimmune disease, the presence of any infectious organisms, healing the leaky gut, balancing the probiotic population, and more. While increasing awareness of the presence of gluten intolerance is absolutely critical, neglecting the secondary effects, as mentioned above, can result in long-term ill health that is truly preventable. Have you experienced such symptoms? Have you removed gluten but are only partially healthier? I'd love to hear from you. To your good health.
  20. Celiac.com 10/23/2017 - What's the relationship between celiac disease and liver histology, serology and treatment response? Celiac disease is diagnosed on the basis of ESPGHAN criteria, and clinical response to gluten-free diet. Researchers have noted histological abnormalities on liver biopsies in patients with celiac disease, but have rarely described the abnormalities in detail. A team of researchers recently set out to assess the histological spectrum of 'celiac hepatitis' and to see if a gluten-free diet can reduce such features. The research team included K Majumdar, P Sakhuja, AS Puri, K Gaur, A Haider, and R Gondal. They are variously affiliated with the Department of Pathology, and the Department of Gastroenterology at the G B Pant Institute of Postgraduate Medical Education and Research, New Delhi, India. Their team analyzed twenty-five patients with concomitant celiac disease and hepatic derangement for clinical profile, laboratory investigations and duodenal and liver biopsy. They then made a histological comparison of pre- and post-GFD duodenal and liver biopsies, where possible. They found that fifteen patients with celiac disease later developed abnormal liver function tests. They also found that 7 out of 10 patients with liver disease showed tissue positive transglutaminase, while 6 of the 10 had antigliadin antibodies. Eight patients showed serological markers for autoimmune liver disease (AILD). Liver histology ranged from mild reactive hepatitis, chronic hepatitis, and steatosis to cirrhosis. They found six patients with liver biopsies made after a gluten-free diet. Five of these patients showed a decrease in steatosis, portal and lobular inflammation and fibrosis score. From these results, they concluded that celiac hepatitis could be a distinct condition, and that patients may present with either celiac disease, or with secondary hepatic derangement. They recommend celiac evaluations for patients with AILD, unexplained transaminasaemia or anemia. This is one of the few studies to show the range of histological changes to the liver in patients with 'celiac hepatitis'. They note that the adoption of a gluten-free diet in such patients may help to improve symptoms of 'celiac hepatitis'. Source: J Clin Pathol. 2017 Sep 29. pii: jclinpath-2017-204647. doi: 10.1136/jclinpath-2017-204647.
  21. Please help, I am 30.All my life from childhood I had upset stomach pain and cramps.As a child was frequently treated for giardia and still had cramps.As a child so strange I had bumps with water on skin.Not redness nothing else.Just bumps filled with water all over my body.Later I never had these.But in my early teens I started with fatigue anxiety.Then extreme fatigue.Hair fallen.Eyebrow loss over a few years to nonexistent eyebrow.Always low iron even with supplementing.Low vitamin D3.Low calcium and magnesium.Gastrointestinal for a few months now I have cramps daily.Diarheea almost daily.Treated for parasites and giradia.nothing changed. OTHER symptoms. Bone pain.Spinal pain.Headache.Eye floaters.Done MRI and eye exams nothing all clear Low iron again at blood work. Low exercise tolerance. So bloated I seem like pregnant in 9 months even !!!if i lost weight the last three months Itchiness all over body but no bumps just redness Itchiness extreme on the scalp. Petechiae small red spots all over my body this is for years now. Tried gluten free even though in my country very hard to keep up with this. Only for few days then gave up and tried again and so on. Did some blood work but only 2 antobodies and not IGa and Igg judt one of them.Negative.this was two years ago. I don't know what to do. Oh and mouth ulcers. And have gas i am afraid because i can hardly control because i am extremely bloated. I am desperate. Thanks.
  22. Celiac.com 10/18/2017 - Celiac disease is a chronic inflammatory disease of the small intestine mucosa due to permanent intolerance to dietary gluten. A team of researchers recently set out to clarify the role of small intestinal epithelial cells in the immunopathology of celiac disease, especially the influence of celiac disease-associated bacteria. The research team included G Pietz, R De, M Hedberg, V Sjöberg, O Sandström, O Hernell, S Hammarström, and ML Hammarström. They are variously affiliated with the Department of Clinical Microbiology, Immunology, and the Department of Clinical Sciences and Pediatrics at Umeå University, in Umeå, Sweden. The team collected duodenal biopsies from children with active celiac disease, treated celiac disease, and a group of clinical control subjects. They then purified intestinal epithelial cells, and analyzed them for gene expression changes at the mRNA and protein levels. To assess how interferon-γ, interleukin-17A, celiac disease-associated bacteria and gluten influence intestinal epithelial cells, they used two in vitro models for human intestinal epithelium, small intestinal enteroids and polarized tight monolayers. In patients with active celiac disease, intestinal epithelial cells significantly upregulated more than 25 defense-related genes, including IRF1, SPINK4, ITLN1, OAS2, CIITA, HLA-DMB, HLA-DOB, PSMB9, TAP1, BTN3A1, and CX3CL1. Of these genes, 70 percent were upregulated by interferon-γ via the IRF1 pathway. Notably, IRF1 was also upregulated by bacteria associated with celiac disease. Intestinal epithelial cells also expressed the NLRP6/8 inflammasome yielding CASP1 and biologically active interleukin-18, which induces interferon-γ in intraepithelial lymphocytes. Over-expression of IRF1 appears to be a key factor in the epithelial reaction in celiac disease. This may be inherent, but may also be due to presence of undesirable microbes that trigger or influence IRF1. From this study, the researchers conclude that activation of IRF1 and IRF1-regulated genes together, both directly and via the interleukin-18 dependent inflammasome, would greatly increase the severity of the inflammatory response, and trigger the pathological gut response that is common in active celiac disease. Could this provide a key to unlocking the mysteries of celiac disease and its associated symptoms? Source: PLoS One. 2017 Sep 21;12(9):e0185025. doi: 10.1371/journal.pone.0185025.
  23. Brand new here. I'm searching for all the help I can get, and, well... I figure you all are "experts" I have suspected for Years that my daughter is Gluten sensitive or allergic (and my husband as well, and my MIL because my daughter is SO much like her). The doctor I approached on the subject said to put her on a gluten free diet and if she does better, then I'll know. I want to have her tested before we go gluten-free, but I don't know how to ask for that (we've moved to a whole new state, so new drs) Her symptoms that make me suspicious are: Eczema that appeared at 2m old (but went away) and Dermatitis herperiformis that is very mild, toddler tummy that never went away, and off and on complaints of pain in her legs and feet; pain so bad she doesn't want to walk. She has been complaining for a couple days, so that is what has led me here. Granted, she is my fastest growing child... she's 7 and is now taller than her petite 9yr old sister (my mother in law was a tall woman, and so is my father so genes are at play), but the extra fat she carries (born with) I suspect has to do with gluten. My husband I suspect as well because he has (for as long as I've known him) body wide acne, became lactose intolerant (gas, cramps, diarrhea), and occasionally other foods will set off the irritated bowel type symptoms as well. He also gets psoriasis rash on his face and scalp. I wonder at times if gluten is the culprit for his mental health and sleep issues as well. Need to get him tested as well. We are on an extremely tight budget, and all the work needed to provide gluten free meals seems like a very daunting task. I'm quite overwhelmed by it, and it Really doesn't help that my family, Especially my husband, is stuck on the processed foods that taste "better". So with all that... Any advice would be helpful.... am I on the right track with these symptoms? Questions welcome. p.s. My mother was diagnosed by small intestinal biopsy, to have "the start of celiac damage" so she has been eating gluten-free since July. She pays for it dearly every time she consumes G now, with major gas, and cramps, etc. Unfortunately she is allergic to soy and has found that Quinoa makes her lips burn and swell so that's out the window. I too have begun reacting to soy with blisters and throat tightness, so changes are in store for me too.
  24. Celiac.com 09/25/2017 - There are currently several efforts underway to develop successful commercial enzyme treatments for celiac disease. Efforts include looking at the digestive enzymes in plants, such as the papaya and star fruits, including such predatory plants, such as the pitcher plant. One focus has been on developing enzymes that can break down gluten before it can trigger an immune reaction. This could prove helpful to many people with celiac disease. One such enzyme under development is Latiglutenase, formerly known as ALV003. Latiglutenase is a new name for an enzyme therapy designed to be taken with meals. The idea is that a person with celiac disease would take an enzyme tablet with a meal. If the meal had mild gluten contamination, the enzyme’s two recombinant proteins would break gluten into fragments that are not toxic to the immune system, thereby preventing exposure, and symptoms. But the stomach is a notoriously difficult environment to work in, so what seems like a simple idea quite a challenge from a science and biology perspective. Seeking to explore the ability of Latiglutinase to improve symptoms, a team of researchers recently set out to test latiglutenase on celiac patients who are seropositive despite following a gluten-free diet. The research team included Jack A. Syage, Joseph A. Murray, Peter H. R. Green and Chaitan Khosla. They are variously affiliated with the Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester USA, the Celiac Disease Center at Columbia University, New York, USA, the Departments of Chemical Engineering and Chemistry, Stanford University, USA, and with ImmunogenX, Newport Beach, USA. "Though the ALV003-1221 trial was inconclusive regarding histologic improvement from latiglutenase, the evidence for symptom benefit, which is more quickly achieved, is quite convincing and clinically relevant," Joseph Murray, MD, of the Mayo Clinic in Rochester, Minn., said in a press release. In these trials, patients with celiac disease who were seropositive despite following a gluten-free diet saw major improvement in symptoms when taking latiglutenase with meals, according to a post hoc analysis of the CeliAction study. The team was really hoping to see histological improvement, but they feel satisfied that this trial shows, says Dr. Murray, that a "therapy to help patients struggling with symptoms due to celiac disease is now within reach." Stay tuned for more on efforts to develop effective enzyme treatments for celiac disease. Read more: Dig Dis Sci. 2017 Doi:10.1007/s10620-017-4687-7.
  25. I was wondering if anyone else has had a reaction to Udi's gluten-free Pizza or other Udi's products. I tried their pizza twice, this one: http://www.glutenfreemall.com/catalog/udis-glutenfree-three-cheese-pizza-frozen-unit-p-2489.html And I've had a particular reaction I have to gluten- racing heart/heart beating too hard/general feelings of anxiety- right after eating it that lasts for about two hours. I don't see anything else on the ingredient list I've had a problem with so I am wondering if the <20 ppm testing simply doesn't cut it for me? I'm a relatively new diagnosed person, about 6 months. I do cook most of my food from scratch and haven't had much trouble. Have avoided eating out for the most part. And this is the only food I have had a reaction to lately. Kind of stinks because it tasted great! Just curious if anyone else noticed anything after eating this pizza. Oh, and I cooked it in my oven, which I use for cooking all my food so I don't think it's that. I use a cookie sheet and parchment paper just to be on the safe side.