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Found 177 results

  1. Celiac.com 06/13/2012 - In general, doctors and researchers know a good deal about how celiac disease works, and they are finding out more all the time. However, they know very little about non-celiac gluten sensitivity (NCGS). In an effort to learn more about non-celiac gluten sensitivity, a team of researchers recently carried out a study to measure the presence of somatization, personality traits, anxiety, depression, and health-related quality of life in NCGS individuals, and to compare the results with celiac disease patients and healthy control subjects. They also compared the response to gluten challenge between patients with non-celiac gluten sensitivity and those with celiac disease. The research team included M. Brottveit, P.O. Vandvik, S. Wojniusz, A. Løvik, K.E. Lundin, and B. Boye, of the Department of Gastroenterology at Oslo University Hospital, Ullevål in Oslo, Norway. In all, the team looked at 22 patients with celiac disease and 31 HLA-DQ2+ NCGS patients without celiac disease. All patients were following a gluten-free diet. Over a three day period, the team challenged 17 of the celiac disease patients with orally ingested gluten. They then recorded the symptoms reported by those patients. They did the same with a group of 40 healthy control subjects. The team then had both patients and healthy control subjects complete questionnaires regarding anxiety, depression, neuroticism and lie, hostility and aggression, alexithymia and health locus of control, physical complaints, and health-related quality of life. Interestingly, patients with non-celiac gluten sensitivity reported more abdominal (p = 0.01) and non-abdominal (p < 0.01) symptoms after the gluten challenge than patients with celiac disease. The increase in symptoms in non-celiac gluten sensitivity patients was not related to personality. However, the two groups both reported similar responses regarding personality traits, level of somatization, quality of life, anxiety, and depressive symptoms. Responses for both groups were about the same as for healthy controls. The results showed that patients with non-celiac gluten sensitivity did not show any tendencies toward general somatization, as both celiac disease patients and those with non-celiac gluten sensitivity showed low somatization levels. Source: Scand J Gastroenterol. 2012 Apr 23.
  2. 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
  3. Hi, I have some questions that I hope to get some answers to. First of all, I am not diagnosed and have not been tested for celiac. Only bloodtest I have taken that's relevant is Ferritin and Iron. I'm not anemic, but both my levels are on the lower range of normal (Ferritin 20-25 and Iron 9 and Iron binding capacity a bit over the normal range). My first question is if this is normal in celiacs, or would the Ferritin and Iron be lower if I was celiac? I eat meat and vegetables and my periods are normal. Second Question is related to abdominal pain. I have these IBS related pains (cramping before going to the bathroom) sometimes and also some bloating and stuff. But sometimes I get this lower abdominal pain that is different, it's much much worse when I press my stomach in or touch it. It almost feel normal when I sit still in one position, but when i lean forward, touch it or press it in, it's really bad. Does anyone else with celiac relate to this kind of abdominal pain? The reason I'm asking these questions is because I'm wondering if I should get tested for celiac. I've had symptoms for a while now, and I want to suggest different blood tests to my doctor. I have a feeling I should get tested for something autoimmune. There are already three different Autoimmune diseases in my mother's family (grandmother with psoriasis, cousin with diabetes, mother with ulcerus colitis), and I've been having diffuse symptoms for a while now, like abdominal pain, diarrhea, muscle/bone pain, some joint pain, muscles falling asleep, some tingling, anxiety, neck pain, fever feeling without fever, chills, fatigue (especially after lunch), bad hangovers etc etc. The list is long. So I'm just trying to get some answers so I can be more clear with my doc. Thanks!
  4. Hello I made this account tonight because I am need of help by those with more experience than me. Basically since June I've been feeling horrible every morning throughout the entire day. My main symptoms were extreme nausea (no vomiting), stomach pain, constipation, and diarrhea. I was in and out of the doctors doing blood work and taking medicines for other things like ibs and gastritis until we started to think about a month and a half later that it could be celiac or a gluten insensitivity. My typical day was wake up around 9 am, feel nauseous, eat little while drinking water, and feel okay enough to fall asleep around 3 pm for a few hours and wake up feeling better with almost no nausea at all. After seeing a Gastroenterologist and having extensive blood work done, everything came back looking normal (beginning of august). We kept up with gluten free diet while taking protonix and eventually things started to turn around. I was waking up less nauseous and it would only last a few hours or a couple compared to all day. It ended up getting better to the point where i woke up later than 8 or 9 am with finally no nausea or hunger pains and i would be able to eat a fair amount throughout the day and not have any symptoms besides occasional bloating. Something happened last thursday where I woke up with nausea and it lasted a couple hours. It has been the same thing since then and even today was one of my worst days with eating little and nausea being present after eating any meal no matter how small. I never use to get nausea at night and for the past two days i have had it for a couple hours before bed. I canceled my endoscopy that was scheduled for the 27th this monday about a week prior to that date because i had felt so much better but now i regret it. We think ive been glutened but i keep a food journal and i havent been eating anything different than before i had made great progress. Does anyone else have this problem? Does this sound like ive been glutened? Something feels different and although i havent been officially diagnosed celiacs I just dont understand why id be feeling this way after making such great progress. This all comes when im starting up school and an internship and is very inconvenient and depressing. I have my own utensils and cookware that I use and I am extra paranoid and safe about making sure my areas in the kitchen are gluten free and clean. Does anyone have any tips or knowledge about this? Should I call up my doctor again? The nausea was so bad this summer i couldnt work and couldnt do anything besides pace around the house while sipping water with the air conditioner running. Im really hoping i can go back to feeling the way i felt just a week ago so that i can start up my internship and make it to school everyday. I appreciate any and all feedback!
  5. Celiac.com 07/03/2018 - The vast majority of celiac disease remain undiagnosed, and clinical testing is usually done on a case by case basis. Factor in vague or atypical symptoms, and you have a recipe for delayed diagnosis and unnecessary suffering. What determines who gets tested, and are current screening methods working? A team of researchers recently set out to assess the factors that determine diagnostic testing, along with the frequency of clinical testing in patients with undiagnosed celiac disease. The research team included I. A. Hujoel, C. T. Van Dyke, T. Brantner, J. Larson, K. S. King, A. Sharma J. A. Murray, and A. Rubio‐Tapia. They are variously affiliated with the Division of Biomedical Statistics and Informatics, the Division of Internal Medicine, at the Division of Gastroenterology and Hepatology at the Mayo Clinic in Rochester, Minnesota. For their case‐control study the team identified 408 cases of undiagnosed celiac disease from a group of 47,557 adults with no prior diagnosis of celiac disease. Their team identified undiagnosed cases through sequential serology, and selected unaffected age‐ and gender‐matched controls. They made a comprehensive review of medical records for indications for and evidence of clinical testing. Over time, people with undiagnosed celiac disease were more likely than control subjects to present with symptoms or conditions that invite testing. This study makes a strong case that current clinical methods are ineffective in detecting undiagnosed celiac disease. Accordingly, the researchers urge the development and adoption of more effective methods for detecting celiac disease. Source: Alimentary Pharmacology & Therapeutics.
  6. 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?
  7. 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?
  8. 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
  9. 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.
  10. 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?
  11. 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?
  12. 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
  13. 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.
  14. 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????
  15. 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.
  16. 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
  17. 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!
  18. 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...
  19. 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
  20. 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!
  21. 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
  22. 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!
  23. 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.
  24. 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.
  25. 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.
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