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Found 9 results

  1. WHAT IS CELIAC DISEASE? Celiac disease is an autoimmune condition that affects around 1.4% of the population (91.2 million people worldwide, and 3.9 million in the U.S.A.). People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems. Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases. Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. CLASSIC CELIAC DISEASE SYMPTOMS Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others. LESS OBVIOUS SYMPTOMS Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important. NO SYMPTOMS Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. CELIAC DISEASE VS. GLUTEN INTOLERANCE Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS) Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there. There are four main differences between celiac disease and non-celiac gluten sensitivity: No Hereditary Link in NCGS Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)? IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS. To add more confusion, many cases of IBS are, in fact, celiac disease in disguise. That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. Crohn’s Disease and celiac disease share many common symptoms, though causes are different. In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis. Crohn’s treatment consists of changes to diet and possible surgery. Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection. Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS Diagnosis of celiac disease can be difficult. Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult. Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis. TESTING There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis. Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products. BIOPSY Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide. WHY A GLUTEN-FREE DIET? Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years. For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease. WHAT ABOUT ENZYMES, VACCINES, ETC.? There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease. There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes. Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement. ASSOCIATED DISEASES The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions: Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include: Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers: Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES: Global Prevalence of Celiac Disease: Systematic Review and Meta-analysis. Clinical Gastroenterology and Hepatology 2018;16:823–836 Celiac Disease Center, Columbia University Gluten Intolerance Group National Institutes of Health U.S. National Library of Medicine Mayo Clinic University of Chicago Celiac Disease Center
  2. Celiac.com 05/02/2018 - Celiac disease is an autoimmune disorder, not an allergy. Celiac disease affects abut 1 in 100 people, and requires professional diagnosis and treatment with a gluten-free diet. There is a good deal of confusion and inaccurate information about celiac disease and a gluten-free diet. Here are some important things to know about celiac disease: 1) Celiac Disease Doesn’t Always Have Obvious Symptoms People with celiac disease may have few or no symptoms. In fact, these days, most people diagnosed with celiac disease, report few or no symptoms. Classic gastrointestinal symptoms include bloating, diarrhea, gas, constipation, and gut pain after consuming wheat, barley or rye. Other prominent symptoms can include fatigue, headache, poor weight gain, and depression. Less classic, but still common celiac symptoms include one or more of the following: anemia, anxiety, skin rashes, infertility, irritability, joint pain, pale mouth sores, thin bones, tingling and/or numbness in hands and feet. 2) No Symptoms Doesn't Mean No Damage The level of celiac-related symptoms or complaints a person has does not equate to the level of gut damage. Few or no symptoms does not mean little or no gut damage. People can have severe celiac symptoms, yet relatively light gut damage on biopsy, or conversely, they can have light symptoms and still have serious gut damage on biopsy. 3) A Simple Antibody Test Can Point the Way If you suspect celiac disease, be sure to talk with your doctor. A simple antibody test or two is usually sufficient to rule celiac disease in or out. If the test is positive, then a doctor will likely recommend a biopsy for confirmation. Recent studies show that a combination of two antibody tests may be better than biopsy. Usually, patients need to be eating wheat when they are tested for celiac disease, but that is changing. There are also some promising new approaches to blood testing for celiac disease. 4) Early Diagnosis is Key The longer you go without treatment, the higher the risk of gut damage, and the greater the likelihood of developing associated conditions. Early diagnosis is especially important in the elderly, as they have a greater risk of developing associated conditions and complications from untreated celiac disease. Still diagnosing celiac disease can be tricky and can take time, partly because the symptoms can be vague, seem unrelated, and can mimic other conditions. 5) No Cure Currently, there is no cure for celiac disease. Several companies are working to develop a vaccine, or other immune therapy for celiac disease, but until we see a major scientific breakthrough, there is no cure for celiac disease. 6) Gluten-Free Diet is Mandatory A gluten-free diet is the only treatment for celiac disease. For people with celiac disease, a gluten-free diet is mandatory, not optional. If people with celiac disease consume wheat, rye or barley proteins they risk causing serious damage to their health, including gut damage and potential cancer, especially in the long term. 7) Full Gut Healing Can Take Time Recent studies show that most people with celiac disease begin to see gut healing in the first year or year and a half. The vast majority of celiacs on a gluten-free diet heal within two to three years. Gut healing usually corresponds to healing in other affected parts of the body, such as improvements in bone microarchitecture, neuropathy, and other areas of celiac-associated damage. 8) Gluten Sensitivity Can Increase The longer you go without gluten, the more sensitive you may become to accidental gluten ingestion. It’s not uncommon for people with celiac disease to see their sensitivity to gluten increase in the weeks and even years after they give up gluten. That can mean that accidental gluten ingestion can bring on symptoms that are more severe than their original complaints. For many people, this sensitivity may slowly taper off and decrease over time. For others, sensitivity remains high and requires extra vigilance about to make sure food is gluten-free. Remember, increased gluten sensitivity does not equal increased gut damage. For some, a fully healed gut may be more sensitive to gluten than a damaged one, and vice versa. Among people on a gluten-free diet due to celiac disease, sensitivity can vary. 9) Non-Celiac Gluten Sensitivity (NCGS) is a Thing You can be sensitive to gluten and not have celiac disease. Researchers have recently confirmed a condition called non-gluten sensitivity. People with this condition experience celiac-like symptoms when they consume gluten. However, they typically do not test positive for antibodies to gliadin, and they typically have a clean biopsy, so no gut damage. Some studies have cast doubt on the existence of non-gluten-celiac sensitivity. Other studies have shown that many people with NCGS react to gluten. Still other studies show that Fructan has emerged as one possible culprit. 10) You Can Still Live a Healthy Life and Eat Delicious Food Having celiac disease means making some important adjustments to your diet, but it’s still possible to live a healthy life and eat tasty food. Read more about the best gluten-free breads, burgers, pizzas, and all your favorite gluten-free treats. Here is a list of SAFE and UNSAFE foods for people with celiac disease. Here is a list of easy, list of easy, delicious gluten-free recipes. Here is a list of great gluten-free sandwich breads. Here is a list of great gluten-free Mexican Fast Food Chains. Here's a recipe for a delicious gluten-free No-Bake Cheesecake. Knowledge is Power Use Celiac.com, and the Celiac.com Forums to get important information and to share your experience with others like you. Other great celiac disease resources include: The Mayo Clinic Celiac Disease Center at Columbia University Gluten Intolerance Group of North America
  3. Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects. The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador. The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis. At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education. Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls. A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general. Source: J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.
  4. Celiac.com 03/21/2018 - Many people with celiac disease suffer from non-gastrointestinal symptoms. Here are 15 non-gastrointestinal symptoms that can make celiac disease difficult to diagnose. If the general public knows anything about celiac disease, it is likely that eating wheat can cause stomach problems in people with the condition. And that’s often true, classical celiac symptoms include abdominal bloating and pain, chronic diarrhea and/or constipation, and vomiting. Young children are more likely to show classic signs of celiac disease, including growth problems (failure to thrive, chronic diarrhea/constipation, recurring abdominal bloating and pain, fatigue, and irritability. Older children and adults tend to have symptoms that are not entirely gastrointestinal in nature. So, depending on age, and other factors, celiac disease affects different people differently. In fact, there are more than 200 signs and symptoms of celiac disease. Some patients have several, some just a few. Many report non-gastrointestinal symptoms. And many people with celiac disease never show any symptoms at all. Yet, both people with vague symptoms and those with no symptoms still face a higher risk of developing complications associated with celiac disease, as well as for celiac-associated conditions. Recent research has demonstrated that only a third of adult patients diagnosed with celiac disease experience diarrhea. Weight loss is also not a common sign. In fact, far more patients diagnosed these days are over weight. We’ve covered the most common physical complaints of people with celiac disease, but here is a list of fifteen common non-gastrointestinal symptoms that can make celiac disease hard to diagnose: 1) ANEMIA—The most common non-gastrointestinal problem faced by people with celiac disease is anemia. About one in three celiacs (34%) suffer from anemia. Anemia and Celiac Disease Is Celiac Disease Worse In People With Anemia? Celiac Disease and Iron Deficiency Linked in Caucasians, But Not Non-Caucasians 2) BLOATING—20% of celiacs complained of bloating prior to diagnosis. 3) DERMATITIS HERPETIFORMIS, PSORIASIS & other skin conditions—Many people with celiac disease suffer from dermatitis herpetiformis, psoriasis, or other skin conditions. Dermatitis Herpetiformis: Skin Condition Associated with Celiac DiseaseSkin Problems and Celiac Disease Five Common Skin Conditions Associated With Celiac Disease Psoriasis and Celiac Disease 4) ATAXIA, NERVE DISEASE, NEUROPATHY—Many people with celiac disease suffer from ataxia, nerve disease, or neuropathy, especially peripheral neuropathy. Peripheral Neuropathy 5) CRYPTOGENIC HYPERTRANSAMINASEMIA—nearly one-third (29%) of people with celiac disease, have what is called cryptogenic hypertransaminasemia, also known as celiac hepatitis. 6) THYROID DISEASE—Thyroid disorders are common in people with celiac disease. Thyroid & Pancreatic Disorders and Celiac Disease Should Patients with Autoimmune Thyroid Disease Be Screened for Celiac Disease? 7) JOINT PAIN—Joint pain is a common complaint of many people with celiac disease, possibly due to associated inflammation. ? DENTAL ENAMEL DEFECTS—Researchers have recently linked dental enamel defects with celiac disease. In the future, dentists may play an important role in helping to diagnose celiac disease, especially in patients with non-classical or vague symptoms, by noting dental enamel defects common in people with celiac disease. Dental Enamel Defects Indicate Adult Celiac Disease Distinct Tooth Enamel Defects Can Help Reveal Celiac Disease 9) UNEXPLAINED INFERTILITY, RECURRENT MISCARRIAGE—Women who suffer from unexplained infertility an/or recurrent miscarriage have a much higher risk of celiac disease. 10) OSTEOPENIA/OSTEOPOROSIS—A full 52% of patients with celiac disease suffer from osteopenia/osteoporosis. Osteoporosis is a more serious bone density problem. Many people with celiac disease suffer from low bone density. Osteoporosis, Osteomalacia, Bone Density and Celiac Disease 11) PSORIASIS—Many people with celiac disease also have psoriasis. It’s also true that many people with psoriasis claim to find that a gluten-free diet can help their symptoms to improve. 12) PSYCHIATRIC DISORDERS—Many people with celiac disease suffer from psychiatric disorders such as anxiety and depression. In some cases, especially in those without classic symptoms, these psychiatric disorders can be among the few symptoms, and can make celiac disease difficult to diagnose. 13) CANKER SORES (Aphthous Stomatitis)—People with celiac disease have much higher rates of canker sores. In fact, nearly 20% of people with symptomatic celiac disease had canker sores as one of their symptoms. In many cases, these canker sores are recurrent, and can be one of the few or only signs of celiac disease. 14) FATIGUE—Many people with celiac disease report recurrent fatigue as one of their symptoms. Sometimes, fatigue can be one of the few or only symptoms, making celiac disease difficult to diagnose. 15) WEIGHT GAIN—Classic celiac disease patients commonly suffered weight loss or low body weight. That has changed. These days, it is much more common for people with celiac disease to be overweight. Screening Versus Symptoms: Does Detection Method Affect Body Mass For Celiacs on a Gluten-Free Diet? How can I be overweight with Celiac ? Sources: Celiac.com Cureceliacdisease.org
  5. Celiac.com 03/19/2018 - Celiac disease can sometimes have vague or atypical symptoms, which can delay or prevent proper diagnosis. For elderly celiac patients, such delays may prevent them from adopting a gluten free diet that can dramatically improve their quality of life. A team of researchers recently set out to review the occurrence, clinical features, diagnosis and management in celiac patients detected later in life. The research team included P Collin, A Vilppula, L Luostarinen, GKT Holmes, and K Kaukinen. They are variously affiliated with the Department of Gastroenterology and Alimentary Tract Surgery, Tampere University Hospital, Tampere, Finland; the University of Tampere, Tampere, Finland; the Department of Clinical Neurophysiology, Neuroscience, HUS Medical Imaging Centre, University of Helsinki, Helsinki University Hospital, Helsinki, Finland; the Päijät-Häme Central Hospital, Lahti, Finland; the Department of Gastroenterology, the Royal Derby Hospital, Derby, UK; and with the Department of Medicine, Faculty of Medicine and Life-Sciences, Tampere University Hospital, University of Tampere, Tampere, Finland. The research team conducted a review of manuscripts concerning celiac disease in the elderly, and derived subgroups of elderly patients from celiac disease articles. The team found that one in four patients diagnosed with celiac disease are aged 60 years or over, and one if five patients are 65 years or over. About 4% of celiac patients are diagnosed at 80 years or above. Around 60% of cases in the elderly remain undetected, mainly due to an non-gastrointestinal symptoms, or the absence of classical symptoms. Common symptoms in these people include: tiredness, indigestion, reduced appetite. The sooner elderly patients are diagnosed, the sooner they can begin to follow a gluten free diet, which leads to the resolution of symptoms and improvement in quality of life in over 90% of patients. It is not uncommon for elderly people to suffer from celiac disease, and to be diagnosed with later in life. It is also not uncommon for diagnosis to take years. This study shows that it is important do diagnose elderly people quickly and accurately, so they may begin to enjoy the full benefits of a gluten-free diet. Source: Aliment Pharmacol Ther. 2018 Mar;47(5):563-572. doi: 10.1111/apt.14490. Epub 2018 Jan 11.
  6. I’ve been having gastro issues from almost 15 years now, initially I was referred to a psychologist because my gp at the time thought I was making it up and that it was all in my head. I was around 10/11 then. Was given aspirin to take every morning before school.. that was my GPS solution back then. Then I was hospitalised for a recurring infection numerous times (not related .. maybe it was) and was given IV antibiotic therapy on all those occasions. That’s when the problems really began to get more worse than they had been prior to this. Had stool and bloods checked for infections with everything negative. Even had a celiac blood panel done then and a colonoscopy back in 2011- they couldn’t carry the full procedure out because it was too painful for me (I was kept awake) so they never got the opportunity to properly take a look. Fast forward to around 2014 and I had only what I can describe as a flare up- chronically so! In 2014 was when things got REALLY bad, I came down with unexplained Loose stools, intense stomach pain (like knives being twisted) it was so bad that I was in bed for a week, doctor ran stool tests and they detected microscopic traces of blood.. he then tested for h. Pylori (3 times) and they all came back negative, so he just put it down to gastritis. Since then i have these types of flare ups most months. He offered no more help and so I decided to cut out gluten for the second time since 2011.. it was successful, my bloating pretty much vanished, I started having normal bowel movements my skin was immaculate and cramping was non existent- I also lost about a stone just by cutting out the gluten. Then I went to my GP and my local nurse and both told me to start eating gluten foods again - because I wasn’t celiac so I had no good reason to cut it out and could cause deficiency. However prior to me cutting gluten out, I had tested shockingly low in b12, vitamin D and was close to becoming anemic. As soon as I cut the gluten out all those blood levels started to gradually restore themselves months after cutting gluten out.. Anyway since then I’ve been on and off of gluten consumption just because I still feel further investigation and ruling out of celiac would be beneficial. But now the situation is far worse than I ever imagined. The pain is almost unbearable, I also have suspected ulcers, (but have began to notice a pattern- the pain and heartburn is at its worst when i've ingested gluten containing foods) and I have also started to have pale and floating stools in the past 6-9 months which is a new development for me. i have previously been diagnosed with ibs ( imho ibs is a blanket term for symptoms that can’t be explained properly) In the past five years i’ve Also started to develop a blistering kind of rash, that has flared up on my knee caps, thighs, arms and I think now on my scalp. The abdominal bloating has me mistaken for someone who is 5 months pregnant which is depressing to say the least. My skin is drier than the Sahara desert- which is odd because I’ve never had problems with dry skin. Chronic migraines are something which affect me every other week at this point, and I have been suffering with PCOS (I have heard infertility can sometimes be linked to celiac) since I can remember. Might I add the only time my menstrual cycle has ever resembled something normal is when I cut out gluten for a long amount of time… I’m writing this history because I imagine there are loads of people who are fed up and frustrated with being passed from doctor to specialist with no real solution, but remaining pain! Pain which is affecting how you live your life. I want to know if anyone out there has gotten to the point where they can no longer carry on eating gluten to wait for more damage to be done - even though specialists require that you do gluten challenges to do things like bloods and biopsies…? How important is the biopsy in 2018, as I have heard biopsies only reach so far down into the small intestine to look for villi atrophy… so what if it’s missed and they tell you it isn’t actually celiac when it is…? Sorry for the essay… just waiting for an appointment in June to see yet another gastro and I know they’ll make me eat gluten so they can do a biopsy. Whether or not they find anything i don’t know. And quite frankly the idea of a biopsy terrifies me because of failed and traumatic past attempts. ( I have ASD so medical procedures and environments scare me to the core) Even at the time of writing this I feel like its probably all in my head because i've had so many GP's tell me it's nothing and Im probably imagining it. But the pain and inability to live a normal life now seems very real to me. I almost feel like a fraud for sharing my story with you all. I’m so desperate now that I’m trying to fund 6k to see a private doctor in the hope she’ll be able to speed up this process. It would be nice to just feel healthy again. Would appreciate it if anyone out there could share their long frustrating journey to diagnosis official or not!
  7. Hi all, I'd really appreciate any advice members could offer. I've realised only recently that a lot of different symptoms that I've experienced over 20 years or more may be connected. In January, following a period of ill health I changed my diet, conforming to a large extent to the 'paleo' lifestyle, with no processed foods or grains. Although I wouldn't have classed my previous diet as unhealthy, within days this change had a remarkable affect on my mood and physical well being. I didn't fully join the dots until March. By that point I had my first beer and noticed a reaction over the next couple of days. I started to wonder if gluten may be an issue after finding this site and several others. I appear to have many of the symptoms of celiac disease including: Seborrheic dermatitis, depression, joint pain, chest pain, abdominal cramps, swollen lymph nodes, malaise, psoriasis, urinary tract infection and some signs of malabsorbtion. I also have asthma (from 12) hayfever and allergic reaction to animals. I've had various medication or tests concerning each of them and have moreobver for a long time had a feeling of unease as if something wasn't right. At no time however as a doctor made any connection between them. In February of this year I started to put the pieces together. I went to my doctor and he arranged a blood test. I'd been gluten free for 2 months and started eating gluten immediately. I reacted within about a day and a half, gradually feeling worse, wit my skin issues the first visible signs. I was only back on gluten for 6 days before taking the test. By then I felt dreadful. I returned to the doctor and found the test was negative. I asked him if 6 days would've been long enough for the test to take effect. He said he thought so, given that I reacted so strongly, however I've since read that this isnt the case and I may have had a false negative. The Doctor admitted he didn't know much about celiac and offered to write me a referral if I could find a specialist who may be better placed to help. Today I'm gluten free and feeling better every day. I've had two instances where I think I've eaten gluten. Once in a soup, which I found had included a gluten containing seasoning. That brought the dermatitis back on scalp and chest. I appear to have reacted again since then, but have not nailed down the food. My problem is whether I should pursue the diagnostic route or simply get on with enjoying my life gluten free. I've read stories here and elsewhere of how long and hard others have strove for a diagnosis. I reacted very badly in just those 6 days back on gluten and the thought of doing this for months to get a diagnosis is not a pleasant one. I'm also worried about the damage I may have inadvertently done to myself with many years of eating gluten as I've had some or all of these symptoms for over 20 years (I'm 41 now). My life is so much better since I made this change and there's no treatment at the end other than eating the way I do now. On the other hand I have no objective proof and for all I know this improvement could just be a placebo effect. I just don't know whether to go down the medical route or just get on with life as a non diagnosed celiac? Thank you for reading this and any advice you can offer.
  8. Hello, I am 25 years old and I never considered Celiac as the cause of my stomach issues. I self diagnosed myself with IBS but I always just thought that I has sensitive intestines but never thought of Celiac. My Celiac journey started about a week before this last Christmas. I broke out in this weird rash while on vacation. I didn't think much of it until it wouldn't go away. I have sensitive skin so I just thought it was nothing. Then I notices I was eating more after eating so I saw my doctor and he did some blood test for food allergies. He also screening me for Celiac. All the allergy tests were negative but my tTG was slightly high at a 10. I was so shocked. I hadn't had any gluten for about a week prior to the test because I was on a diet so they said that it could have been even higher if I had eaten gluten prior to the test. So I was gluten free for 3 weeks and I felt amazing. No stomach pain, no diarrhea, constipation, or nauseousness. I had more energy and my emotional state was better. OK, So I thought I would make it official and see a GI doc for more testing. They told me to go back to a normal diet and scheduled me for a consult and a upper GI scope for the following month (2/28/14). They also had me do more blood work last week and I got those results today. They said my tTG was higher, from 10 to 74, and my Gliadin went from 8 to 19. Has anyone else seen results like this?? They told me that it is positive for Celiac Disease, but they still needed to do the scope for confirmation. They told me that there is no other conditions that cause blood results like this, has anyone had these tests be high and no have Celiac? I noticed that my symptoms were much worse after restarting a normal diet after being off for 3 weeks, is this normal? I need to suffer for another week until my scope then I will go back to Gluten Free. Any advise would be great.... Thanks
  9. Hello all, I used to suffer from daily severe stomach aches and nausea (for ~10 years), and through an elimination diet, I found that gluten was a big part of my issue -- it was like a light switch, no more gluten, no more stomach aches. I don't know if I am Celiac or not, but I treat it as though I am, because I react so badly to it. I don't intend on eating gluten for the rest of my life. Although my stomach aches went away, I am still suffering from severe, chronic nausea. I never throw up, but feel as though I will many times a day. I have been trying different solutions with my naturopath (dairy elimination, heartburn/acid reflux treatments) with no luck so far, so I have just scheduled an endoscopy as a next step. When I met my GI for my consultation, he pretty strongly pushed for me to go back on gluten for a few weeks before the endoscopy, and I pretty strongly pushed back that I didn't want to. I have been off of gluten for 1.5 years and I don't really care if I get a Celiac diagnosis or not, but I am in doubt as to whether or not I did the right thing. I don't want to go through the endoscopy process, refuse to eat wheat, and then miss something that might help deal with my nausea. Will a positive or negative diagnosis of Celiac change anything for a person who is already 100% gluten free? Are there Celiac-related issues that could be causing my nausea, and do I have to have the diagnosis to try to treat those issues? I'm really torn. I felt like I was doing the right thing by telling him 'no,' but I also don't want my stubbornness to get in the way of diagnosing and treating the cause of my nausea. Can anyone offer suggestions or advise?
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