Search the Community

Showing results for tags 'undiagnosed'.



More search options

  • Search By Tags

    Type tags separated by commas.
  • Search By Author

Content Type


Forums

  • Celiac Disease: Diagnosis, Recovery, Related Disorders & Research
    • Gluten-Free and Celiac Disease Calendar of Events
    • Celiac Disease - Pre-Diagnosis, Testing & Symptoms
    • Celiac Disease - Post Diagnosis, Recovery/Treatment(s)
    • Celiac Disease - Related Disorders & Research
    • Dermatitis Herpetiformis
    • Gluten Intolerance and Behavior
  • Celiac Disease Support & Help
    • Celiac Disease - Coping With
    • Celiac Disease - Parents of Kids or Babies With Celiac Disease
    • Gab/Chat Room - To Discuss Anything BUT Celiac Disease / Gluten-Free Diet
    • Celiac Disease - Doctors
    • Celiac Disease - Teenagers & Young Adults Only
    • Celiac Disease - Pregnancy
    • Celiac Disease - Friends and Loved Ones of Celiacs
    • Celiac Meeting Room
    • Celiac Disease - Sleep
    • Celiac Disease - Support Groups
  • Gluten-Free Lifestyle
    • Gluten-Free Foods, Products, Shopping & Medications
    • Gluten-Free Recipes - Baking & Cooking Tips
    • Gluten-Free Restaurants
    • Gluten-Free Ingredients & Food Labeling Issues
    • Celiac Disease - Publications & Publicity
    • Gluten-Free Travel
    • Gluten-Free Diet & Weight Issues
    • Gluten-Free International Room (Outside USA)
    • Gluten-Free Sports and Fitness
  • When A Gluten-Free Diet Just Isn't Enough
    • Other Food Intolerance and Leaky Gut Issues
    • Super Sensitive Celiacs & Gluten Sensitive
    • Alternative Diets
  • Forum Technical Assistance
    • Board/Forum Technical Help
  • DFW/Central Texas Celiacs's Events
  • DFW/Central Texas Celiacs's Groups/Organizations in the DFW area

Blogs

There are no results to display.

There are no results to display.

Categories

  • Celiac.com Sponsors
  • Celiac Disease
  • Safe Gluten-Free Food List / Unsafe Foods & Ingredients
  • Gluten-Free Food Reviews
  • Gluten-Free Recipes
    • Gluten-Free Recipes: American & International Foods
    • Gluten-Free Recipes: Biscuits, Rolls & Buns
    • Gluten-Free Recipes: Noodles & Dumplings
    • Gluten-Free Dessert Recipes: Pastries, Cakes, Cookies, etc.
    • Gluten-Free Bread Recipes
    • Gluten-Free Flour Mixes
    • Gluten-Free Kids Recipes
    • Gluten-Free Recipes: Snacks & Appetizers
    • Gluten-Free Muffin Recipes
    • Gluten-Free Pancake Recipes
    • Gluten-Free Pizza Recipes
    • Gluten-Free Recipes: Soups, Sauces, Dressings & Chowders
    • Gluten-Free Recipes: Cooking Tips
    • Gluten-Free Scone Recipes
    • Gluten-Free Waffle Recipes
  • Celiac Disease Diagnosis, Testing & Treatment
  • Miscellaneous Information on Celiac Disease
    • Additional Celiac Disease Concerns
    • Celiac Disease Research Projects, Fundraising, Epidemiology, Etc.
    • Conferences, Publicity, Pregnancy, Church, Bread Machines, Distillation & Beer
    • Gluten-Free Diet, Celiac Disease & Codex Alimentarius Wheat Starch
    • Gluten-Free Food Ingredient Labeling Regulations
    • Celiac.com Podcast Edition
  • Celiac Disease & Gluten Intolerance Research
  • Celiac Disease & Related Diseases and Disorders
    • Lists of Diseases and Disorders Associated with Celiac Disease
    • Addison's Disease and Celiac Disease
    • Anemia and Celiac Disease
    • Anorexia Nervosa, Bulimia and Celiac Disease
    • Arthritis and Celiac Disease
    • Asthma and Celiac Disease
    • Ataxia, Nerve Disease, Neuropathy, Brain Damage and Celiac Disease
    • Attention Deficit Disorder and Celiac Disease
    • Autism and Celiac Disease
    • Bacterial Overgrowth and Celiac Disease
    • Cancer, Lymphoma and Celiac Disease
    • Candida Albicans and Celiac Disease
    • Canker Sores (Aphthous Stomatitis) & Celiac Disease
    • Casein / Cows Milk Intolerance and Celiac Disease
    • Chronic Fatigue Syndrome and Celiac Disease
    • Cognitive Impairment and Celiac Disease
    • Crohn's Disease and Celiac Disease
    • Depression and Celiac Disease
    • Dermatitis Herpetiformis: Skin Condition Associated with Celiac Disease
    • Diabetes and Celiac Disease
    • Down Syndrome and Celiac Disease
    • Dyspepsia, Acid Reflux and Celiac Disease
    • Epilepsy and Celiac Disease
    • Eye Problems, Cataract and Celiac Disease
    • Fertility, Pregnancy, Miscarriage and Celiac Disease
    • Fibromyalgia and Celiac Disease
    • Flatulence (Gas) and Celiac Disease
    • Gall Bladder Disease and Celiac Disease
    • Gastrointestinal Bleeding and Celiac Disease
    • Geographic Tongue (Glossitis) and Celiac Disease
    • Growth Hormone Deficiency and Celiac Disease
    • Heart Failure and Celiac Disease
    • Infertility, Impotency and Celiac Disease
    • Inflammatory Bowel Disease and Celiac Disease
    • Intestinal Permeability and Celiac Disease
    • Irritable Bowel Syndrome and Celiac Disease
    • Kidney Disease and Celiac Disease
    • Liver Disease and Celiac Disease
    • Lupus and Celiac Disease
    • Malnutrition, Body Mass Index and Celiac Disease
    • Migraine Headaches and Celiac Disease
    • Multiple Sclerosis and Celiac Disease
    • Myasthenia Gravis Celiac Disease
    • Obesity, Overweight & Celiac Disease
    • Osteoporosis, Osteomalacia, Bone Density and Celiac Disease
    • Psoriasis and Celiac Disease
    • Refractory Celiac Disease & Collagenous Sprue
    • Sarcoidosis and Celiac Disease
    • Scleroderma and Celiac Disease
    • Schizophrenia / Mental Problems and Celiac Disease
    • Sepsis and Celiac Disease
    • Sjogrens Syndrome and Celiac Disease
    • Skin Problems and Celiac Disease
    • Sleep Disorders and Celiac Disease
    • Thrombocytopenic Purpura and Celiac Disease
    • Thyroid & Pancreatic Disorders and Celiac Disease
    • Tuberculosis and Celiac Disease
  • The Origins of Celiac Disease
  • Gluten-Free Grains and Flours
  • Oats and Celiac Disease: Are They Gluten-Free?
  • Frequently Asked Questions
  • Journal of Gluten Sensitivity
    • Journal of Gluten Sensitivity Summer 2018 Issue
    • Journal of Gluten Sensitivity Spring 2018 Issue
    • Journal of Gluten Sensitivity Winter 2018 Issue
    • Journal of Gluten Sensitivity Autumn 2017 Issue
    • Journal of Gluten Sensitivity Summer 2017 Issue
    • Journal of Gluten Sensitivity Spring 2017 Issue
    • Journal of Gluten Sensitivity Winter 2017 Issue
    • Journal of Gluten Sensitivity Autumn 2016 Issue
    • Journal of Gluten Sensitivity Summer 2016 Issue
    • Journal of Gluten Sensitivity Spring 2016 Issue
    • Journal of Gluten Sensitivity Winter 2016 Issue
    • Journal of Gluten Sensitivity Autumn 2015 Issue
    • Journal of Gluten Sensitivity Summer 2015 Issue
    • Journal of Gluten Sensitivity Spring 2015 Issue
    • Journal of Gluten Sensitivity Winter 2015 Issue
    • Journal of Gluten Sensitivity Autumn 2014 Issue
    • Journal of Gluten Sensitivity Summer 2014 Issue
    • Journal of Gluten Sensitivity Spring 2014 Issue
    • Journal of Gluten Sensitivity Winter 2014 Issue
    • Journal of Gluten Sensitivity Autumn 2013 Issue
    • Journal of Gluten Sensitivity Summer 2013 Issue
    • Journal of Gluten Sensitivity Spring 2013 Issue
    • Journal of Gluten Sensitivity Winter 2013 Issue
    • Journal of Gluten Sensitivity Autumn 2012 Issue
    • Journal of Gluten Sensitivity Summer 2012 Issue
    • Journal of Gluten Sensitivity Spring 2012 Issue
    • Journal of Gluten Sensitivity Winter 2012 Issue
    • Journal of Gluten Sensitivity Autumn 2011 Issue
  • Celiac Disease Support Groups
    • United States of America: Celiac Disease Support Groups and Organizations
    • Outside the USA: Celiac Disease Support Groups and Contacts
  • Celiac Disease Doctor Listing
  • Kids and Celiac Disease
  • Gluten-Free Travel
  • Gluten-Free Cooking
  • Gluten-Free
  • Allergy vs. Intolerance
  • Tax Deductions for Gluten-Free Food
  • Gluten-Free Newsletters & Magazines
  • Gluten-Free & Celiac Disease Links
  • History of Celiac.com
    • History of Celiac.com Updates Through October 2007
    • Your E-mail in Support of Celiac.com 1996 to 2006

Find results in...

Find results that contain...


Date Created

  • Start

    End


Last Updated

  • Start

    End


Filter by number of...

Joined

  • Start

    End


Group


AIM


MSN


Website URL


ICQ


Yahoo


Jabber


Skype


Interests


Location

Found 25 results

  1. Celiac.com 07/02/2018 - We know from earlier studies that diagnosed celiac disease is more common in women than in men, but there isn’t much good data on sex-based differences in undiagnosed celiac disease. To address this discrepancy, Claire L. Jansson-Knodell, MD, and her colleagues at the Mayo Clinic, in Rochester, Minnesota, conducted a meta-analysis of studies that performed both a screening and confirmatory test that included either a second serological study or a small intestine biopsy, and that that provided clear and complete data regarding sex. According to data they presented at Digestive Disease Week 2018 in Washington, D.C., women are significantly more likely than men to have undiagnosed celiac disease, and the numbers are even higher for younger girls. In all, the researchers found 88 studies that met their inclusion criteria. These studies included data on nearly 300,000 patients. When they got done crunching the numbers, the research team demonstrated for the first time that women also had a higher rate of undetected celiac disease than men. When the team analyzed data from one subgroup focused on children, they found that rates of undiagnosed celiac disease were even higher in girls compared with boys. Timely diagnosis of celiac disease is important for preventing unnecessary suffering, and potential damage and disease associated with untreated celiac disease. In one recent case, a doctors found that a woman's psychotic delusions were caused by undiagnosed celiac disease and an adverse reaction to continued gluten exposure. Her condition improved quickly once she began a gluten-free diet. The research team says that their findings could change approaches to clinical screening, diagnosis and management of celiac disease. They also suggest that physicians might do well to increase their suspicion levels for celiac disease when evaluation women and girls. Source: Helio.com
  2. My entire life I've been dealing with what I now know is reactive hypoglycemia. I vividly remember eating a ton in the morning because I was scared of getting "woozy" and not having snacks prepared during elementary school. I also remember nearly passing out several times in P.E. class just two hours after lunch. Over the years I've managed it by having snacks and protein with each meal, but it's been getting more difficult as I've gotten older. My mom has the same thing and she gets woozy pretty often. She said her mother dealt with it, too. I thought this could be something related to diabetes, but after I posted on a diabetes forum, I had someone ask if I had been tested for gluten intolerance or thought about it. So, I'm bringing my symptoms here to see if any of this sounds like an intolerance. I am so tired of having digestive problems and I don't know what to do. Here are my other symptoms: *I have dealt with anorexia since I was 13 (currently 18), but I've been doing well for this past year, so new foods/normal amounts of food/eating out really shouldn't be bothering my stomach this much anymore. I've never experienced a regular period since I started starving myself soon after I first got it. When I was recovered the first time, before a relapse, I had a couple of irregular periods. Since my second recovery, I STILL have not regained my period. It has been over a year and my nutritionist seemed stumped. I have since stopped seeing her and am eating quite normally and freely as I used to and have gained weight recently just to see if that could help. Still nothing. In the mornings I'm usually very full, kind of nauseous, hot, and thirsty. I feel sick after eating a lot, or even "normal" amounts when I go out with friends. I have stomach cramps/sharp pains, extreme gas all day and everyday, suuuuuper bloated all the time, reflux, nausea, sometimes constipation, fatigue, my finger and toes often tingle, mouth ulcers, headaches...when I was younger I had "chicken skin" on the backs of my arms, which has since gone away. I also am diagnosed with anxiety. There's honestly more symptoms but I can't list them all. To sum it up, my stomach is upset all the time and I am always bloated no matter how long ago I ate/how nutritionally dense the food was. *forgot to mention, I'm also lactose intolerant, just like my mom. Any feedback is greatly appreciated.
  3. 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.
  4. Hi everyone, I've recently got more details on my first blood test for celiac and my ALT levels were slightly higher than the normal threshold, 25 vs between 8-22. I've just had my second blood test and am waiting on the results but along with all the other usual celiac symptoms I've been having is this a good sign that I do indeed have celiac disease?
  5. Hi everyone, I've had pale foul smelling stools for an extended period of time which can sometimes alternate between diarrhoea and constipation with very rarely some red/white spots in the stool along with lower abdominal pain and pain below my ribcage/lower sides which I'm terrified is to do with my lymph nodes. When I first went to my doctor he gave me some treatment for IBS and also got me in for a blood test. All my bloods came back normal apart from my liver which really freaked me out at the time and I have another blood test in a few days time. I have been gluten free for about 2 weeks, since my first blood test, and symptoms haven't stopped although gluten free food does seem to sit in my stomach easier and I have felt less fatigued upon going gluten free, though I did unknowingly eat some gluten last night and have had a very gassy stomach since. The symptoms can also be heavily exacerbated by alcohol however. I'm 18 years old having just started university in the UK and this things are getting to the point where I'm struggling to cope. My fears are also making me feel like I could have some kind of cancer or Crohn's disease and at 18 this is turning me into a complete wreck. Is it likely I have Coeliac or could it be something much worse? I'm starting to fear the worst!
  6. Celiac.com 10/20/2017 - Are doctors even getting close to diagnosing the actual number of cases of celiac disease? Or are they missing the vast majority? Researchers have said for some time that there are far more people with celiac disease than are being diagnosed, and that the vast majority of cases go undiagnosed. So, just how far are we from the actual number? Well, if a new study by Canadian nutrition researchers is any indication, doctors are very far from diagnosing most cases. The team studied the blood work of nearly 3,000 people, and their conclusions are stunning. They say that ninety percent of celiac cases go undiagnosed. How could this be? One reason is that even classic celiac disease symptom, such as abdominal pain, bloating, gas, diarrhea, anemia and weight loss can mimic other conditions. Less classic symptoms such as fatigue, low vitamin C, D and calcium levels can be misleading. Ahmed El-Sohemy, a professor of nutritional science at the University of Toronto, wanted to see whether celiac disease results in subpar nutrition because of poorer absorption of vitamins and minerals. But to find out, he needed Canadian data on the frequency of undiagnosed celiac disease. To that end, El-Sohemy and his colleagues checked blood samples from more than 2,800 individuals in Toronto. One group had an average age of 23, and the other 45. Among their findings is likely ~1%, with 87% of cases being undiagnosed. These findings suggest the need for better screening in high genetic risk groups. Source: BMJOPEN.com
  7. Celiac.com 05/19/2017 - Did you know that now, according to Beyond Celiac 83% of those with celiac disease are misdiagnosed or undiagnosed? Did you know that the average time a person waits to be correctly diagnosed, according to Daniel Lefler, M.D., M.S, of the Celiac Center at Beth Israel Deaconness Medical Center is still six to 10 years? This has changed little in the past 10 years, even though celiac disease can lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases. Over a four year period, people with undiagnosed celiac disease cost an average of $3,964 more than the healthy individuals (Source: Long et al, 2010. Did you know that 5 - 22% of people with celiac disease have an immediate family member (first degree relative who also has celiac disease, and that there isn't yet a pharmaceutical treatment or cure for it? In 2009 WebMD reported that, in the USA, celiac disease has quadrupled over the last 50 years, yet many people who have the disease remain undiagnosed. Still Dr. Stefano Guandalini, N.D. Director of the Celiac Disease Center at the University of Chicago told WebMD, "Many of these people have no symptoms, but many do have symptoms that are not recognized for what they are. We believe that only five percent of people with celiac disease know they have it". Is there any wonder that a woman at the dietician's office at our local hospital where I sometimes volunteer did not know she had celiac disease? This is because she was only experiencing symptoms of joint and muscle pains, abdominal pain and laboratory tests only showed anemia. She was first referred to an orthopedic specialist, then an internist, and neither checked for celiac disease or questioned her further. "Hello!!" Are there still general practitioners out there who are not aware that there is a blood test for celiac disease? Some people experience symptoms found in celiac disease such as a "brain fog," depression, ADHD like behavior, abdominal pain, bloating, diarrhea, constipation, headaches, bone or joint pain, and chronic fatigue when they have gluten in their diet, yet do not test positive for celiac disease. The terms non-celiac gluten sensitivity (NCGS) and non-celiac wheat sensitivity (NCWS) are generally used to refer to this condition. When removing gluten from their diet it removes symptoms. At my first biopsy of the bowel the gastroenterologist failed to biopsy the jejunum. My blood test was positive, the biopsy of the dermatitis herpetiformis proved positive too, and it wasn't until I insisted on a second biopsy of my jejunum that I was diagnosed. If I had not been persistent, I would have given up after the first biopsy and continued itching and ingesting gluten. Persistence, or stubborn determination (i.e. knowing my own body) paid off, but it took a year for the dermatitis herpetiformis to totally rescind, most particularly the sores on my scalp. You know your own body better than anyone; you know when something is wrong. If your grocery store fails to give you good service you go elsewhere. The Celiac Disease Foundation, both in Canada and the United States, can help you find the right doctor to discuss your symptoms so you can get diagnosed and treated. Shop and find your own healthcare practitioner. Do not allow a doctor tell you that you are neurotic, perimenopausal, or their favorite: "stressed." Since there are more than 200 known celiac disease symptoms which may occur in the digestive system or other parts of the body, and some people develop celiac disease as a child, others as an adult, you owe it to yourself to keep checking and researching and reading magazines like Celiac.com's Journal of Gluten Sensitivity, because, according to the Mayo Clinic, there is no cure for celiac disease. The American Journal of Gastroenterology, at ScienceDirect.com, offers a nationwide view of celiac disease, and conducted two randomized trials that tested strategies of early or delayed gluten introduction in infants, and neither strategy appeared to influence the risk for celiac disease. They also indicated that breastfeeding did not protect against celiac disease. "While disappointing, these results should spur the study of wider environmental risk factors beyond infant feeding, such as intrauterine and perinatal exposure as well as environmental influences later in life, including drug exposure, microbial infections, and the mictobionme. Given that celiac disease can develop at any age, it is imperative to study these proposed triggers so as to elucidate the loss of tolerance to gluten and to develop future intervention strategies." At the start of the Gastroenterology study, between 2000 and 2001 - 11.1 out of every 100,000 people had celiac disease. Toward the end of the study - between 2008 and 2010 it was up to 17.3 out of every 100,000 people. However, researchers noted that the incidence of celiac disease plateaued after 2004. It is no big surprise that they believe, according to Dr. Stefano Guandalini, M.D. "that only about 5 percent of people with celiac disease know they have it." Web MD reported that "Celiac Disease had quadrupled." Many physicians I approached whilst completing this survey indicated it was physician knowledge of the signs and symptoms of celiac disease that has caused a greater increase in celiac testing and the use of a simple blood test (tTG-IgA). The Tissue Transglutaminase Antibodies test will be positive in about 98% of patients with celiac disease who are on a gluten-containing diet. The same test will come back negative in about 98% of healthy people without celiac disease. Although rare, patients with celiac disease could have a negative antibody test result. There is also a slight risk of a false positive test result, especially for people with associated autoimmune disorders like Type 1 Diabetes, autoimmune liver disease, Hashimoto's thyroiditis, psoriatic or rheumatoid arthritis, and heart failure. This test is not good for someone who has been following a gluten-fre diet on their own. A biopsy of the small intestine is still considered the only way to diagnose celiac disease by many doctors. Many parents are reluctant to submit their young child to a biopsy of the Jejeunum and have used only blood tests, including the IgA Endomysial antibody (EMA). This test has a specificity of almost 100% but it is not as sensitive as the tTG-IGA test, because about 10% of people with celiac disease do not have a positive EMA test. Also, it is VERY expensive in comparison to the tTG-IgA and it requires the use of primate esophagus or human umbilical cord, so it is usually reserved for difficult to diagnose patients. The Total Serum IgA is used to test for IgA deficiency, a condition associated with celiac disease that can cause a false negative tTC-IgA or EMA result. If you are IgA deficient, our doctor can order a DGP or tTg-IgC. The decimated gliadin peptide (DGP-IgA and IgG) is a test that can be used to further screen for celiac disease in individuals with IgA deficiency or people who test negative for tTg or EMA antibodies. Even though it is very rare, it is possible for someone with celiac disease to have negative antibody test results. So please do not become discouraged even with negative results, if you are still experiencing symptoms talk with your physician and undergo further medical evaluation. Keep in mind that some of these tests are not medically covered by insurance. Did you know that you can get genetic testing for celiac disease? People with celiac disease carry one or both of the HLA DQ2 and DQ8 genes. So do up to 25 - 30% of all people. Carrying HLA DQ2 and/or DQ8 is not a diagnosis of celiac disease, nor does it mean you will ever develop celiac disease. However, if you carry HLA DQ2 and/or DQ8 your risk of developing celiac disease is 3% instead of the general population risk of 1%. Since celiac disease is genetic this means it runs in families. First degree family members (parents, siblings, children) who have the same genotype as the family member with celiac disease, have up to a 40% risk of developing celiac disease. The overall risk of developing celiac diseases when the genotype is unknown is 7% to 20%, which is a big difference! We cannot blame ALL physicians for the lack of a correct diagnosis. It is one of the most puzzling, multi-faceted diseases, and a patient going into their family physician's office may have very vague symptoms. Thousands of dollars may be spent on blood tests, referrals to specialists, x-rays, and scans before a diagnosis is found. There is nothing more deflating or frustrating to someone who has a myriad of legitimate symptoms than to be told that they are either depressed, stressed or suffering from an overactive imagination. Sources: The American Journal of Gastroenterology https://celiac.org http://www.beyondceliac.org
  8. Celiac.com 07/21/2016 - Celiac disease is a condition that can sometimes have vague symptoms, including mental and neurological symptoms, and that can make it hard to diagnose. Sometimes, individual cases can help to shed light on the serious nature of celiac disease, as well as the importance of a gluten-free diet in treatment. Consider the case of a 37-year-old Ph.D. candidate began to suffer from mysterious delusions, details of which appear in The New England Journal of Medicine. The doctors who treated her wrote that the woman, who was otherwise healthy and seemingly normal, had begun to believe that friends, family members and even strangers were conspiring to act out scenes for her in a what the woman thought was some kind of "game." The delusions got so bad that the woman began making threats against her family, and was admitted to a psychiatric hospital and was diagnosed with a psychotic disorder, according to the report. The doctors prescribed anti-psychotic medications, which, they wrote, did not work very well. However, during her stay, they did notice that she had several vitamin and mineral deficiencies, had lost a lot of weight and also had thyroid problems, according to the report. Noting the symptoms, the doctors began to suspect celiac disease, said Dr. Alessio Fasano, director of the Center for Celiac Research and Treatment at Massachusetts General Hospital in Boston and one of the doctors who treated the woman. When the doctors confirmed celiac disease, the woman refused to go on a gluten-free diet, because she was still suffering delusions and believed the doctors to be actively deceiving her about having celiac disease. In this case, the woman lost her job, became homeless and even attempted suicide before she was finally re-hospitalized at a psychiatric facility, where she was successfully placed on a gluten-free diet, where she improved tremendously. She came to understand that a reaction to gluten had triggered her symptoms and caused her life to spin out of control, said Dr. Fasano, and she wanted people to understand that her strange behavior was due to the gluten reaction. The woman's case is not typical, to be sure, but it highlights the sometimes sneaky ways celiac disease can manifest, the serious health impacts celiac disease can have, and the importance of adopting a gluten-free diet. Source: Livescience.com.
  9. Hi Everyone, I've never really posted on an internet message board about my health before, so please forgive me for any TMI - I'm just at the end of my rope and thought I might turn to a community of others with similar problems to mine for help. I've been to more doctors than I count, and the majority are absolutely not helpful. I was diagnosed with Celiac Disease 3 years ago, and I'm gluten free, (though I've had the occasional "glutening" at restaurants, etc. from time to time) however, as of late I've been suffering from debilitating, sharp and stabbing abdominal pain. It's a sharp, stabbing pain on both sides and kind of a burning sensation in the middle around my belly button. At first the pain was worse on the right side, but now it seems to be worse on the left. It even goes into the tops of my thighs on both sides, and today it's moved into my back. It feels like this painful heavy pressure across my mid-upper back and then it also feels crampy/sharp around where my kidneys are. I also have this horrible taste in my mouth 24/7 and am excessively salivating like I'm about to vomit at all times, but I never do. I'm super nauseated every day and have a decreased appetite - I was barely able to eat at all this past weekend. I was also having terrible, frequent diarrhea, but the last doc gave me IBS medication which seems to be turning the diarrhea into constipation. I don't have a gallbladder anymore, though the pressure/pain in my back reminds me almost exactly of what the gall bladder attack felt like before I had it removed. I've been to the ER twice and about 5 doctors, and they didn't find anything in the CT scan, blood tests, ultra sounds, stool tests, etc. and basically just keep telling me they can't find anything wrong. That doesn't make sense to me because this has been going on for almost 2 months, and right before I came down with this - whatever this is - I was pretty much fine. In fact, for 2 weeks in Feb. I was traveling around for work, I was rock climbing in Phoenix and hiking, and doing outdoor activities feeling great, and then by the end of Feb. after I'm back home for about a week all of a sudden I'm debilitated and can't get out of bed. If anyone has any suggestions or has ever experienced anything like this, I'd be super grateful to hear your stories and suggestions. Thanks! Laura
  10. Hello everyone, I'm new to this website but I know that people have surely asked similar things on other pages but I couldn't find any forums with exactly the same thing. I am 21 and about 2 years ago now was when I self-diagnosed myself as celiac/gluten sensitivity. Before that I had been having EXTREME stomach pains in the upper left hand side of my abdomen, that came along with vomiting most of the time and it hurt every time I ate for days after that. I had two friends at the time with diagnosed celiac and they seemed to have had the same pains as me. I was going to do the elimination diet at the time but felt so much better after a month that I didn't try to eat gluten and haven't since. I have had the stomach pains a few times since then (3 time in 2 years, and before I was getting them at least every month or so). Each time I had these stomach pains there seems to be an explanation that included gluten. Well 4 days ago I had a reaction and I can't think of anything that I ate that could've possibly had gluten in it (I only ate at home). My question is, can people who have been through similar things give me some advice? What should I do? Should I try to go to the GI and get advice? I've been thinking that I should try to eat gluten for a day and see if I get that stomach pain? Does that stomach pain sound familiar? I guess I also hate the idea of having to always be a nuisance, I just picture myself on my honeymoon or a nice relaxing vacation having to ask for the staff to make me something gluten free and I guess I kind of hope that I misdiagnosed myself.. Is there anyone on here/anyone who knows someone that this has happened to?
  11. Hi all, Just as an FYI before I start, we are in the UK so getting to see paediatricians or specialists needs referrals from a GP. Biopsies will rarely be done on children and we also don't usually get a copy/to see blood results. My two year old son had severe reflux as a baby, then started having severe allergy symptoms, gut issues and rashes etc, when he was one. Removing milk and eventually soya from his diet helped a lot, especially with the rashes, but he still wasn't right and was eventually referred to see the paediatrician. There was a 6 month waiting list and in that time his gut issues got worse and worse, he would scream most of the night, be lethargic and pale through the day, unexplained fevers, bloating, diarrhoea etc. I suspected it was possibly wheat/gluten. In July we finally saw the paed who agreed with me and ran the antibody and genetic blood tests. We wouldn't get the results until our next appointment and by September we were at our wits end waiting. I decided to remove wheat and gluten from his diet and within a few weeks he started showing major signs of improvement. We finally got the results in November and although the genetic testing came back as positive the antibody tests were negative (I don't know anything more specific than that). Because he was so much better on a gluten-free diet she concluded that he wasn't coeliac, he must be gluten intolerant instead, told us to keep him dairy, soya and gluten free and come back in a year. After much internet searching it seems that false negatives are quite common in little ones and not uncommon in adults either and that even with a negative antibodies result it could still be causing damage internally. Is this right? I'm confused as to where to go next. Should I pursue an official coeliac diagnosis in a years time, even though that will mean putting him back on gluten? Just today he is suffering after eating a small cake at a party yesterday when I wasn't looking. I don't want to make him sick for weeks on end to possibly have another negative antibody test knowing they wouldn't even consider doing a biopsy. Sorry, that turned into a bit of an essay!
  12. I have been on the run for a diagnosis for the past three years and have reached nowhere as most doctors I have met so far have either said that I have psychosomatic symptoms arising from a depression I once had or irritable bowel syndrome ( I'm not depressed anymore, I will be again due to the lack of not knowing what's ruining my life). I have severe migraine headaches which increased progressively over the years and have chronic rhinitis since a small age ( I am currently 21 yrs old). Over the last three years, my health started deteriorating. In February 2013, I started suffering from depression ( bouts of uncontrollable crying, extremely low and worthless feeling, sensitive to small unreasonable things, lack of focus and generally like i was dropped into a pit and trapped). I have always been a very strong person who is not generally sensitive. But from that particular point things have just changed. Now I believe I'm not depressed anymore, though I have been diagnosed as having an anxiety problem. Since then I have had other symptoms recurring ( they come and go and there are days I feel slightly better) including joint pain (everywhere) , dull annoying aching pain on the entire right side of my body that gives me a numb, extremely weak feeling, muscle spams and tightness (mostly in the thighs), severe brain fog ( I am a very ambitious person and it kills that I cannot concentrate or remember anything that I am studying anymore), migraine headaches ( pain in the right eye during the attack), cycles where I have acid reflux like symptoms, constant vomiting after every meal, alternating constipation and diarrhea. I always have mild stomach ache after eating and then have to use the bathroom. During these cycles, I have gone to doctors who said it was IBS and put me on medication that never worked on me. I have gone up until three weeks where I could not eat anything but drink ORS. I also have cycles of excessive sleeping where I sleep almost 15 hrs a day ( increases or decreases from 15) and still wake up extremely tired. Throughout the sleep I am constantly dreaming and get very unrefreshed sleep. I also have shortness of breath,nausea, chronic fatigue and exhaustion and can not do anything mentally or physically stimulating. There have been points where my hands were weak enough that opening bottles became a challenge. Also have a history of incessant hair pulling since I was a child and vitamin D deficiency ( from a blood test done in December 2014). My thyroid tests came back all normal. This summer I started NAET treatment and according to the muscle testing response I have been shown to be "allergic" to almost all food items and also deficient in vitamins and minerals. The treatment so far hasn't helped me and I came across Celiac disease and asked for me to be tested during the period while I was undergoing NAET. I suspected celiac due to the fact that including all these symptoms, I also have tooth discoloration and brown stains on my teeth that I get cleaned every 3-4 months. Dentists do not really know what causes them so far and the last one i spoke to said it may be due to enamel hypoplasia which occurs in gluten intolerant cases. I did a ttg-IgA and total IgA test but came back negative/normal. I have done IgE test in the past and have results that are sky-rocketing high ( as i have chronic rhinitis). But this time my IgE too came back normal as well despite having allergies. Again, this blood was drawn for testing in the middle of my NAET treatment. Should I trust this result? I hope to find some answer or diagnosis to what is going on with me. I cannot function properly and I am extremely exhausted with no energy all day. Life is crumbling at a very important age. If it may be helpful, my family has a history severe joint pain, spondylosis, migraines and couple of symptoms similar to mine. They all just deal with it. My sister who is 14 have been showing weakness on one side, tooth problems and keeps fracturing herself along with very irregular menstrual cycles. I too have noticed that my menstrual period has reduced to less than 3 days from the normal 5 over the past two years, and they are light. Is anyone facing similar health problems or am I a hypochondriac who is not "thinking positively enough" to get better? Sorry for the extremely long post.
  13. The reality is, I don't feel well, and I need some suggestions as to what sort of doctor I should see next// any other suggestions. Here is the list of symptoms I have: (I am twenty years old and I am female) -Panic attacks -Fatigue -depression/anxiety INCREASED -difficulty walking up stairs (recently I also fell while going up the stairs, but typically it's just heart palpitations and out of breath when doing stairs) -body goes numb when jogging even if I only jog for thirty seconds -no appetite (have lost fifteen pounds and I wasn't overweight before) -pain in my legs when walking around occasionally (it shoots down the entire leg, sometimes both legs) -two instances in the past month of a new rash showing up on my thighs and then disappearing Diagnosis I already have: (and because of celiac disease I am gluten free dairy free) Celiac disease Autism Tests I have already had within the last year which ALL came back NORMAL: Nuclear stress test Echocardiagram of my heart thyroid levels vitamin levels CBC (complete blood count) Amylase/ lipase levels Please help me get to the root of these issues. I'm happy to answer any questions if additional information would be helpful.
  14. Celiac.com 12/12/2008 - The tales of diagnois for celiac disease are almost alwaysdramatic: Some people go for years dealing with aches and pains and thinkingthat this is just the way their body was built. I remember feeling that way when my one-year-old was so crabby—walkingaround with her big old “Buddha” belly. Recently, I requested the top threesymptoms from adult and child celiacs to put together a survey of the topsymptoms on my blog. I didn’t ask forthe diagnosis stories, but people offered some insight into the trials andtribulations of getting diagnosed with celiac disease—and eventually leadinga new and healthier life! It took a major virus, three doctors, x-rays, blood tests toget to Emma’s diagnosis.One doctor toldme “kids throw up” (once every nine days? Really?), a second opinionrecommended Milicon for her “gassy” tummy. Luckily, it all ended the way it should have, with a diagnosis of celiacdisease that only took about 5 months—which is relatively little compared tosome of the stories you’re about to hear. One woman wrote me describing her daughter’s symptoms whenshe was diagnosed at age 15, but then she wrote back about the subsequentdiagnoses of her sister and mother.Jeanwas diagnosed at age 70 but she and her family tell me her severe scoliosis atage 12 was a symptom! Can you believebeing misdiagnosed for 58 years?Jean evenhad to be put in a back cast for a time. Jean’s daughter, Vicky was diagnosed with Crohn’s disease atthe age of 12—which included 3 major surgeries! Her celiac disease diagnosis didn’t comeuntil the age of 51. By then major damagehad been done to her body with the onsets of several health issues:rheumatoid and osteo arthritis, thyroiddisease, severe osteoporosis (both hips have been replaced ...one twice)and severe scoliosis. It turns out: three generations of women in the samefamily all started showing their symptoms in those early teen years. Kim wrote me and said she was diagnosedat 39 years old when she was hospitalized with stomach pain, vomiting anddiarrhea.But she added at the end ofher note, “ probably shouldhave gotten tested at [age] 11 when I had the same severe cramping that put mein the hospital.” The bright spot inthis story is that her eventual celiac diagnosis, led to the quicker diagnosisof her 5-year-old daughter who was just beginning her symptoms of low weightand anemia. Another contributorsaid her 14-year-old son was diagnosed with celiac two years ago, but has alsohad a kidney issue for the last 9 years.But since he has been eating gluten free…his kidneys have also gottenbetter, last report was the best since before he was brought in at age 5!! Now I wonder which really came first?”It does make you wonder. But there are somesuccess stories: One mom mentionedher son’s quick diagnosis. “[it] started with diarrhea. Thought it was a stomach bug.” Then it moved to constipation and two weekslater things still weren’t right.Thentheir doctor put two and two together, “[An]amazing pediatrician said ‘This sounds like Celiac’ and ran the bloodtests. Andrew was only ‘sick’ about 1 month before diagnosis,” shesaid. However looking back on it all, hehad a big belly and slow to grow. Others talked about having celiac disease and not even feeling sick. “I onlyfound out about the anemia through a blood test done as part of a completephysical; my general health to that point was excellent, including runningmarathons,” Danny wrote. “The only reason [my 3-year-old daughter]was diagnosed was her yearly blood draw came back positive so we had thebiopsy,” said Monica, a mom of two celiac children. Anna’s dad, Tom, was diagnosed in his 40s aftera family-round of blood testing. He isasymptomatic. The last two pointsshow how important it is to take part in preventative measures, by gettingregular blood testing done for first-degree family members. The National Institute of Diabetes, Digestiveand Kidney Diseases says, “…because celiac disease is hereditary, familymembers of a person with the disease may wish to be tested. Four to 12 percentof an affected person’s first-degree relatives will also have the disease.” The stories ofdiagnosing celiac disease may leave many of us angry, frustrated, and possiblygrateful—all at the same time. The missed diagnoses and misdiagnoses of those who have thisdisease presents a roller-coasterride of emotions. I hope this articlehelps you in knowing many others have gone through it and are likely goingthrough it as we speak.We just need tomake sure we’re spreading the word and getting as much awareness out there aspossible to help others in similar situations.
  15. Celiac.com 03/09/2015 - When you hear estimates saying that celiac disease has a prevalence of about 1% of then general population of a given place, it is important to remember that there are still significant variations in rates of certain subgroups within those general populations. That is illustrated by a a recent UK study that shows that poor UK children with celiac disease are far more likely to remain undiagnosed, compared their non-poor counterparts. In fact, rich and middle-class children are 80% more likely to receive proper medical diagnosis for celiac disease, compared to poor children, according to results from a recent UK study. So even though serological studies indicate that celiac disease affects about 1% of all UK children, current estimates of diagnostic patterns among children do not indicate how disease rates might vary by socioeconomic group. A research team in the UK recently looked into socioeconomic variation in the incidence of childhood celiac disease. The research team included Fabiana Zingone, Joe West, Colin J. Crooks, Kate M. Fleming, Timothy R. Card, Carolina Ciacci, Laila J. Tata. They are variously affiliated with the Division of Epidemiology and Public Health, City Hospital Campus of University of Nottingham in Nottingham, UK, and the Department of Medicine and Surgery at the University of Salerno in Salerno, Italy. For their study, the team identified all children aged 0–18 years between 1993 and 2012 treated by general practices nationwide that are part of a large population-based patient health database. They assessed the incidence of celiac disease in each quintile of the Townsend index of deprivation and stratified by age, sex, country and calendar year. From information on 2,063,421 children, they found 1,247 celiac disease diagnoses, for an overall celiac rate of 11.9 per 100 000 person-years, which was similar across the UK countries, and higher in girls than in boys. Interestingly, they found a range of celiac diagnosis across socioeconomic groups, with the rate of diagnosis being 80% higher in children from the least-deprived areas than in those from the most-deprived areas (incident rate ratio 1.80, 95% CI 1.45 to 2.22). This pattern held for both boys and girls and across all ages. Across all four countries of the UK, they found similar associations between celiac disease and socioeconomic status. While celiac incidence up to age 2 remained stable over the study period, diagnoses at older ages have almost tripled over the past 20 years. Children living in less socioeconomically deprived areas in the UK are more likely to be diagnosed with celiac disease. Increased implementation of diagnostic guidelines could result in better case identification in more-deprived areas. Source: Arch Dis Child. doi:10.1136/archdischild-2014-30710
  16. Celiac.com 01/19/2015 - A team of researchers set out to determine what factors might influence dissemination of a new and validated commercial Point-of-Care Test (POCT) for celiac disease, in the Mediterranean area, when used in settings where it was designed to be administered, especially in countries with poor resources. The research team included S. Costa, L. Astarita, M. Ben-Hariz, G. Currò, J. Dolinsek, A. Kansu, G. Magazzu, S. Marvaso, D. Micetic-Turku, S. Pellegrino, G. Primavera, P. Rossi, A. Smarrazzo, F. Tucci, C. Arcidiaco, and L. Greco. For their study, the team relied on family pediatricians in Italy, and nurses and pediatricians in Slovenia and Turkey, to look for celiac disease in 3,559 children aged 1-14 years, 1,480 (ages 14-23 years) and 771 (1-18 years) asymptomatic subjects, respectively. This was done at pediatrician offices, schools and university primary care centers The team used a new POCT that detects IgA-tissue antitransglutaminase antibodies and IgA deficiency in a finger-tip blood drop. Subjects with positive screens and those suspected of having celiac disease were referred to a Celiac Centre to confirm the diagnosis. The team then estimated POCT Positive Predictive Value (PPV) at tertiary care (with Negative Predictive Value) and in primary care settings, and POCT and celiac disease rates per thousand in primary care. At tertiary care setting, PPV of the POCT and 95% CI were 89.5 (81.3-94.3) and 90 (56-98.5) with Negative Predictive Value 98.5 (94.2-99.6) and 98.7% (92-99.8) in children and adults, respectively. In primary care settings of different countries where POCT was performed by a different number of personnel, PPV ranged from 16 to 33%, and the celiac disease rates per thousand ranged from 4.77 to 1.3, while and POCT rates ranged from 31.18 to 2.59, respectively. This study shows that interpretation of POCT results by different personnel may influence the performance of POC, but that use of POCT is an urgent priority for diagnosing celiac disease among people of countries with limited resources, such as rural populations and school children. Source: BMC Gastroenterol. 2014 Dec 18;14(1):219.
  17. Celiac.com 03/28/2014 - Did John F. Kennedy suffer from symptoms of undiagnosed celiac disease? Celiac disease expert Dr. Peter H. R. Green says Kennedy's known symptoms and family history make it likely that America's 35th president did in fact have celiac disease, which remained undetected in his lifetime. Dr. Green is the director of the Celiac Disease Center at Columbia University, professor of clinical medicine at the College of Physicians and Surgeons, Columbia University and attending physician at the Columbia University Medical Center. He writes that: “John F. Kennedy’s long-standing medical problems started in childhood. In Kennedy’s adolescence, gastrointestinal symptoms, weight and growth problems as well as fatigue were described. Later in life, he suffered from abdominal pain, diarrhea, weight loss, osteoporosis, migraine and Addison’s disease. Chronic back problems, due to osteoporosis, resulted in several operations and required medications for chronic pain." Greene adds that Kennedy’s Irish heritage, history of gastrointestinal complaints since childhood, diagnosis of irritable bowel syndrome and migraine, presence of severe osteoporosis, and the development of Addison’s disease all point to celiac disease. Kennedy was given steroids for his problems. Steroid use is associated with the development of osteoporosis and Addison’s disease. The occurrence of Addison’s disease in his sister, however, argues for a familial [genetic] cause of his Addison’s disease, rather than an iatrogenic one. Source: Irishcentral.com.
  18. Hi, everyone. My blood work was negative for Celiac last year, and I also had a biopsy done on my hand (palms) where I have an undiagnosed pustular psoriasis-like rash (and on the soles of my feet) and that was inconclusive for psoriasis AND DH. So I am still no further to finding out these health problems I have. I had an upper endoscopy but I don't think they took biopsies of my stomach or my duodenum. If they did, I never received a call with any results. Anyway, I'm going through a phase again of diarrhea (fluffy, weird cloud-like stools) of yellowish or light brown color most of the time, bloating, nausea and the newest issue is heart burn that is not relieved by Pepcid or Prevacid which is WEIRD for me. I have an old-ish prescription of Phenergan (from last year due to the severe nausea I had) and it's working well for my heartburn and bloating pain. I am starting to journal my food intake and I am noticing that whenever I eat something with obvious gluten I end up with this heart burn and bloating. My stomach was happy and fine when I woke up, I was up for about an hour then had breakfast. Mom made biscuits and eggs and I had an egg sandwich with one biscuit as the bread, and had a slice of American cheese on it. Within a half hour I noticed the bloating and burning way down low in my intestines, then less than 5 minutes after that I felt the heart burn appear. So I took a Phenergan. I'm feeling much better though right now it's not fully kicked in, so I still have a little bloating pain but it seems the heart burn is gone. Now here is some background: Feb 5, 2014 I quit drinking diet soda altogether. I had 3 that day by noon and around 1pm I refused to drink any more soda. I have only had water, orange juice, soy milk and 2 regular Cokes since then. I am drinking water all day with the occasional OJ for breakfast (4-8oz). About a week or so ago I noticed my PMLE (sun allergy) was horrible. It is now affecting my face first and foremost, my EYES, my arms which is typical for me but even indoors Incandescent bulbs are causing the rash on my face, and arms. That is not normal at all for me. I've been waking up with a rash all over my face, it's not super red or anything but it tends to itch. I am not noticing any swelling in my throat or anything like that. I do have rosacea and it's flared up big time on my left cheek, on the apple. Huge red blotch. So I put sunscreen (SPF 50) on my face today not long after I woke up. I have to wear my over-my-glasses sunglasses all day and until I go to sleep due to the brightness of the sun in our house, lightbulbs, TV, laptop screen cause me to have a migraine and my eyes sting and burn. I'm also having eye allergies so I've been using Zaditor which doenst work for the light sensitivity (which also causes stinging and burning) and I switched to Visine A.C. and it works better for now for the regular seasonal eye allergies. But the stinging/burning from light started prior to the eye allergies. So that is where I am at right now. I have to wear sunscreen whenever I go outside or am near a window. And even then the sunscreen doesn't seem to protect my face at all from developing the rash and the rosacea. The sunscreen is finally protecting my arms like it should but for some unknown reason it is not helping my face. So basically I am a hermit in my own home now. I am thinking I might go ahead and do the colonoscopy. But when I had the upper GI scope they didn't sedate me enough and wow it was a horrible experience to say the least. So I will tell the colonoscopy doctor and nurse that I was not sedated enough for the endoscopy I had in August (which was in Ohio, we moved to Nevada since then) so I hope they can seriously sedate me this time. I am lactose intolerant but do not have any issues with sliced cheese or sour cream that I have noticed. I can't eat cottage cheese, frozen yogurt, yogurt, milk, etc. Though I seem to be able to handle milk or cream in amounts I use for coffee every morning without having any issues. I have no known food allergies other than Kiwi and fresh pineapple. That causes burning on my lips and tongue but no systemic reactions as of last time I had those foods. If you can give any advice or anything please feel free to reply. I have a dermatologist appointment tomorrow to address the skin rash. I'm seriously thinking of going gluten-free but I live with my parents and they do not have gluten intolerances. Our kitchen would be full of gluten and skillets, pans, oven, toaster, pantry, etc would all be contaminated all the time. Thank you.
  19. Hi there, I have just been offered a celiac test by my gp for my 3 year old but I'm sceptical she that she is suffering from this as she seems to not have the main symptoms - anyway here goes... Since infancy she has had trouble pooping - more recently up to a week or longer without going and extreme pain when she does - sometimes taking another week to get it out (crying and lying on the couch for a week) She has a raised bumpy rash on her upper arms and cheeks but it is not too visible as it has only a little redness - it is not sore or itchy at all for her. She has been moody and cries a lot which is not her normal character. She has started to lose weight but is still withing the 50% percentile (was just above, now a little under). anyway after watching her get worse over the last 12 months I finally put her on a 10 day elimination diet (sugar, eggs, dairy & gluten) not 100% but 99% or enough to see if it was food causing the issue, she had instant improvement and has been the dear wee girl we used to know. She poops every 2nd day now (unformed but not fatty). I reintroduced everything and only got a reaction from wholegrain bread - within 1 hour she was crying and had an allergy ring on her backside. - Took her to DR to get advice on how to figure out if it was wheat, additives etc and she suggested Celiac. Her cousin has the gene but no one actually has it in the family (although there are a few sensitives) Does this sound like Celiac to anyone - she suggested I let her eat whatever for the next two weeks including gluten every day until we get a blood test - started today and her rash is back and she has been very easily upset for about 90 minutes after each meal - then fine again part 2 is that I am breastfeeding a 7 month old right now who is showing the same poop every 10 days, gassy symptoms his sister did at that age (although not as bad) - should I go gluten free as well - I have heard of developmental problems occurring and I'd rather not take a wait and see approach. I doubt very much I would show positive to celiac disease as I have zero tummy trouble although... I do have ADD and endometriosis which I understand is linked.
  20. Celiac.com 08/18/2010 - The importance of an accurate celiac disease diagnosis is becoming increasinglymore evident to health practitioners and the general public worldwide. While the outcomes of undiagnosed celiac disease are still unclear,current studies are attempting to find an answer. Between 1995 and 2001, serum samples were obtained from 16,886 Olmsted County, Minnesota citizens 50 years of age or older with unknown celiac status. Out of 16,847 adults studied, 129 cases were discovered to have undiagnosed celiac disease. 127 undiagnosed celiacs and 254 unmatched controls were then submitted for a systematic evaluation in search of over 100 possibly coexisting ailments. The scientists found that while celiac disease has been associated with an elevated risk for cancer, this study found no significant risk increase for cancer in undiagnosed celiacs compared to the control group. Researchers also found that those patients with undiagnosed celiac disease displayed an increased rate of osteoporosis and hypothyroidism. Furthermore, undiagnosed celiacs were also found to typically have a lower body mass index, and lower levels of ferritin and cholesterol, and to be less prone to arthritis and have a reduced rate of glucose intolerance. The correlation between lower arthritis and glucose intolerance in undiagnosed celiacs is speculated to be a result of a lower body mass index. In conclusion, researchers were not able to determine a connection between undiagnosed celiac in older adults and comorbidity. In fact, except for impaired bone health, most undiagnosed celiacs in this study displayed little comorbidity and they did not have increased mortality rates when compared to the control group. Researchers of this study therefore concluded that there may be advantages and disadvantages to being an older undiagnosed celiac. Source: Gastroentrology doi:10.1053/j.gastro.2010.05.041
  21. Hello to all. I am new to this forum and to celiac disease. I have not been diagnosed ,but been tested for everything under the sun. I have been having issues for years with my gut stomach..etc. First it was IBS, gasteroperisis and my biggest symtoms was the severe nausea, bloating, some vomitting amd stomach spasms.Now I am lactose intolerant. Just discovered peanuts really do a bad number on me and coffee (favorite) chocolate, breads and some medications all cause nausea oh and vitamins. My life have been upside down until i came to this site. I believe that this is it. my GI doc never mentioned this possibiliy..however my primary care did so i started watching my foods closely she has reassigned me to another gi for testing. After several hospital stays, job loss,depression etc... I am ready to take my life back! Glad to know im not alone, Looking forward to my gluten free peanut free dairy free lifestyles! Relieved and hopeful!:
  22. Lancet 2001; 358: 356-61 Celiac.com 08/10/2001 - In line with past studies on the mortality rate of people with celiac disease, the results of a new study conducted by Dr. Giovanni Corrao (Cattedra di Statistica Medica, Università di Milano-Bicocca, 20126 Milano, Italy), et. al., indicate that the death rate among people with celiac disease is double that of the normal population. The prospective cohort study examined 1,072 adults who were diagnosed with celiac disease between 1962 and 1994, and their 3,384 first-degree relatives. The mortality rates by 1998 among both groups were compared to that of the normal population. Their findings show that 53 people in the celiac disease group died compared with the 25.9 deaths that were expected (Standardized Mortality Ratio - SMR). Unlike past studies, however, this one also looked for different patterns of clinical presentation of the disease. For example, the results indicate that within three years of diagnosis there was a significant increase in the mortality rate for those who presented symptoms of malabsorption. This same increase was not seen in those who were originally diagnosed because of minor symptoms, or via an antibody screening. The SMR also increased when there was a delay in diagnosis, and when a gluten-free diet was not followed. Non-Hodgkin lymphoma was the main cause of death, and no excess in mortality rate was seen in the groups first-degree relatives. Conclusion: Prompt diagnosis and dietary treatment will decrease the mortality rate of people with celiac disease. More studies are needed regarding asymptomatic people with celiac disease and their risk of intestinal lymphoma.
  23. By Peter H.R. Green, MD Dr. Green is Professor of Clinical Medicine, Director of the Celiac Disease Center at Columbia University College of Physicians and Surgeons. This article originally appeared at http://hnn.us/articles/1125.html and is reprinted here by permission of Richard Shenkman. Celiac.com 11/27/2002 - New revelations that have appeared in the New York Times and the Atlantic Monthly, about John F. Kennedys health have raised questions about his physical condition during his presidency. Robert Dallek, in the December Atlantic Monthly, described in The Medical Ordeals of JFK long standing medical problems that started in childhood. In Kennedys adolescence, gastrointestinal symptoms, weight and growth problems as well as fatigue were described. Later in life, he suffered from abdominal pain, diarrhea, weight loss, osteoporosis, migraine and Addisons disease. Chronic back problems, due to osteoporosis resulted in several operations and required medications for chronic pain. He was extensively evaluated in major medical centers including the Mayo Clinic and hospitals in Boston, New Haven and New York. Among the multiple diagnoses were ulcers, colitis, spastic colitis, irritable bowel syndrome, and food allergies. His medications included corticosteroids, antispasmodics, Metamucil and Lomotil. However it is not clear that his physicians obtained a definitive diagnosis. Review of this medical history raises the possibility that JFK had celiac disease. Celiac disease is caused by ingestion of gluten, which is the main protein component of wheat and related cereals, rye and barley. The small intestine develops villous atrophy that results in difficulties in the absorption of nutrients. Diarrhea and abdominal pain are common symptoms. Elimination of gluten from the diet results in resolution of the inflammatory condition in the intestine and the associated symptoms and prevention of the complications of the disease. A life-long gluten free diet is then required. People with celiac disease, providing they adhere to the diet have normal longevity. Celiac disease can present at any age. In infancy and childhood it may cause chronic diarrhea, abdominal pain, and growth, behavioral and development problems. In older individuals the presentation of celiac disease is frequently due to the development of complications of the disease. These include anemia, osteoporosis, skin rashes or neurological problems. The neurological problems include neuropathy, epilepsy, ataxia (balance disorders) and migraine. While the disease is more common in females, men are affected as well. Osteoporosis is common in patients with celiac disease, men often are more severely affected than women. Gastrointestinal symptoms in celiac disease persist for many years prior to diagnosis and are often attributed to an irritable bowel syndrome or spastic colitis. Patients typically see many physicians prior to the diagnosis of celiac disease. Autoimmune disorders occur more frequently in patients with celiac disease than the general population by a factor of ten. Frequently the autoimmune disorder assumes greater clinical significance than the celiac disease and as a result is diagnosed first. The associated autoimmune disorders include thyroid dysfunction, psoriasis, dermatitis herpetiformis (an intensely itchy skin rash), Sjogrens syndrome, and Addisons disease. Relatives of patients with celiac disease have a greater risk, not only of celiac disease, but also of other autoimmune diseases. THE IRISH CONNECTION Celiac disease was formally considered a rare disease of childhood. It is now recognized as being very common in those of European descent, one of the most common genetically determined conditions physicians will encounter. Recent studies have demonstrated the country with the greatest prevalence to be Ireland. In Belfast one in one hundred and twenty two have the illness. The prominent familial association of the disease indicated by the occurrence in one of ten first degree relatives and in 80 percent of identical twins points to a genetic component of the disease. However the actual genes responsible for the disease have not been discovered though there are many groups working on the problem. It is known that there is a strong association with specific HLA genes that are required for the disease to occur, but are themselves not sufficient for the disease to be manifested. Kennedys Irish heritage, long duration of gastrointestinal complaints (since childhood), diagnosis of irritable bowel syndrome and migraine, presence of severe osteoporosis, and the development of Addisons disease all lead to a presumptive diagnosis of celiac disease. Kennedy was given steroids for his problems. Steroid use is associated with the development of osteoporosis and Addisons disease. However steroids were initially used in clinical practice in the 1930s and 1940s for many indications, not considered appropriate now. In the case of Kennedy, if he did in fact have celiac disease, the steroids would have suppressed the inflammation in the intestine and reduced his symptoms, making diagnosis of celiac disease less likely to be established. The occurrence of Addisons disease in his sister, however, argues for a familial cause of his Addisons disease, rather than an iatrogenic one. Could celiac disease have been diagnosed in Kennedy during his lifetime? Possibly. The disease was first recognized in 1887 as well as its treatment with an elimination diet. It was recognized to occur at all ages. However, it was not until the 1950s that the shortage of bread during the Second World War and its subsequent reintroduction in Holland prompted recognition of the role of wheat as a cause of this malabsorption syndrome. While it was in the 1970s that physicians became aware of the more subtle presentations of the disease. The diagnosis of celiac disease initially requires consideration that it may be present in an individual patient, even now many physicians do not consider the diagnosis. It would however be possible to diagnose celiac disease in JFK now, if biopsies taken during his life, or autopsy material of the small intestine had been archived and was now made available. Frozen blood samples could also provide diagnostic material for there are serologic tests now available that are sensitive and specific for the condition.. A diagnosis of celiac disease, if it had been made could have been treated by diet alone. This would have prevented all the manifestations of the disease and its complications. Because of the strong genetic component of celiac disease, Kennedys family may well be interested in obtaining the diagnosis as well.
  24. Celiac.com 04/22/2009 - Not many studies have looked at prevalence and long-term outcome of undiagnosed celiac disease, and so not much is known about this aspect of the disease. Recently, a team of Mayo Clinic researchers conducted an assessment of the long-term outcome of undiagnosed celiac disease, and whether the prevalence of undiagnosed celiac disease has changed during the past 50 years. The research team was made up of Alberto Rubio-Tapia, MD; Robert A. Kyle, MD; Edward L. Kaplan, MD; Dwight R. Johnson, MD; William Page, PhD; Frederick Erdtmann, MD, MPH; Tricia L. Brantner, MD; W. Ray Kim, MD, Tara K. Phelps, MS; Brian D. Lahr, MS; Alan R. Zinsmeister, PhD; L. Joseph Melton III, MD; and Joseph A. Murray, MD. For the study the team looked at blood samples taken from 9,133 healthy young adults at Warren Air Force Base between 1948 and 1954, along with samples from 12,768 sex-matched subjects from 2 recent cohorts from Olmsted County, Minnesota. Subjects from the Minnesota cohorts were matched for date of birth (n=5,558) or age at sampling (n=7,210) with the Air Force study. The research team tested the blood samples for tissue transglutaminase and, if abnormally high, for endomysial antibodies. They charted survival rates in a 45 year follow-up period in the Air Force and compared rates of undiagnosed celiac between the Air Force data and the recent cohorts. Of 9,133 Air Force subjects, 14 had undiagnosed celiac disease--a rate of 0.2%. In that cohort, persons with undiagnosed celiac disease had higher mortality rates across the board than those who had tested negative (hazard ratio=3.9; 95% CI, 2.0-7.5; P <.001). In the case of the Minnesota cohorts, the team found undiagnosed celiac disease in 68 persons with similar age at sampling (0.9%), and 46 persons with similar years of birth (0.8%). These recent cohorts showed rates of undiagnosed celiac disease that were 4.5-times and 4-times greater than the Air Force cohort (both P=.0001). The research team found that data from the 45 year of follow-up of Air Force subjects showed that people with undiagnosed celiac disease have a 400% higher risk of death than seronegative subjects ("non-celiacs"). They also concluded that rates of undiagnosed celiac disease seem have increased dramatically in the United States over the last 50 years. Gastroenterology - 13 April 2009 (10.1053/j.gastro.2009.03.059).
  25. Gastroenterology, Volume 129, Issue 2, Pages 454-463 (August 2005) Celiac.com 08/11/2005 - A large study by Swedish and American researchers has determined that untreated celiac disease is associated with an increased risk of adverse fetal outcome. In contrast to several small studies that have been done in the past that produced conflicting results, this study looked at 2,078 births to women who were diagnosed with celiac disease—1,149 were diagnosed prior to their child’s birth, while 929 were diagnosed after. The researches employed a national register-based cohort study (1964-2001) that was restricted to women between 15-44 years old who had a single live birth. The researchers measured intrauterine growth retardation, low birth weight, very low birth weight, preterm birth, very preterm birth and birth by caesarean section for each child in the study. The results of the study indicate that undiagnosed celiac disease is associated with an increased risk of intrauterine growth retardation (OR = 1.62; 95% CI: 1.22-2.15), low birth weight (OR = 2.13; 95% CI: 1.66-2.75), very low birth weight (OR =2.45; 95% CI: 1.35-4.43), preterm birth (OR = 1.71; 95% CI: 1.35-2.17), and caesarean section (OR = 1.82; 95% CI: 1.27-2.60). In contrast, those diagnosed with celiac disease before their births were not at increased risk for these adverse fetal outcomes. The researchers conclude that undiagnosed celiac disease increases the risk of unfavorable fetal outcomes—a risk that is reduced in those with diagnosed celiac disease, presumably because they have been treated with a gluten-free diet.