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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    POOR AND INCONSISTENT MEDICAL FOLLOW-UP COMMON IN CELIAC DISEASE


    Jefferson Adams

    Celiac.com 09/07/2012 - Many people with celiac disease will tell you that getting a proper diagnosis is just part of the battle. Maintaining a strict gluten-free diet, and getting adequate medical follow-up care can be nearly as challenging as getting a proper diagnosis.


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    Photo: CC--tjmwatsonA group of researchers, led by Joseph A. Murray, MD, AGAF, of Mayo Clinic, confirms that assessment in a new study. The study appears in Clinical Gastroenterology and Hepatology, and shows that follow-up care for patients with celiac disease is often poor and inconsistent.

    For their study, researchers collected data on 122 patients diagnosed with celiac disease between 1996 and 2006 in Olmsted County, MN. The patients were 70 percent women, and averaged 42 years of age.

    The researchers then calculated the rates at which patients were given follow-up exams from six months to five years after celiac disease diagnosis.

    Of the 113 patients the study followed for more than four years, only 35 percent received follow-up analyses that met AGA guidelines. The other patients did not receive medical follow-up that met "even the most lax interpretation of current guidelines,” said Dr. Murray.

    The researchers used the Kaplan-Meier method to estimate event rates at 1 and 5 years. They classified patients according to categories of follow-up procedures recommended by the American Gastroenterological Association (AGA).

    The study shows that even with widespread circulation of follow-up recommendations, plenty of patients are not getting proper follow-up for celiac disease.

    According to Dr. Murray, gastroenterologists with the expertise in celiac disease need to encourage active follow-up of celiac patients and improve their overall quality of medical care.

    Basically, says Dr. Murray, celiac disease "should not be different from other chronic conditions for which medical follow up is a given such as liver disease, inflammatory bowel disease or even gastroesophageal reflux disease."

    Anecdotally, many patients with celiac disease feel that they must manage celiac disease on their own,” Murray adds, pointing out that it is important for doctors and patients to understand the need for proper medical follow-up of celiac disease.

    The authors note that, since gastroenterologists are leading the way in the detection of celiac disease, and since it is a chronic condition, with possible long-term complications, improved communication between gastroenterologists and patients can help to ensure that patients get important follow-up care, and thus improve outcomes in celiac disease.

    What are your thoughts? Do you feel that you've gotten adequate follow-up care for your celiac disease? Share your comments below.

    Source:


    Image Caption: Photo: CC--tjmwatson
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    Guest Madonna

    Posted

    What follow up care? I once found an article that explained exactly what follow up was necessary and took it to my doctor. She asked if she could keep it and of course I let her thinking that finally someone would help. Next visit she said she didn't understand what I wanted her to do.

    My daughter asked the doctor at Madigan hospital to test her to see if she was getting hidden gluten. The doctor had no idea how to even order the blood test.

    Finally found a doctor who moniters my osteoperosis and checks my vitamin levels but doesn't think it's necessary to do a blood test to see if I'm getting hidden gluten.

    I really haven't found a doctor that knows much about how to diagnose let alone follow up.

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    I was diagnosed with celliac disease 7 years ago and have had one followup to see how things are going since then. My doctor seems to think no followup is needed if I follow a strict gluten-free diet. I told him that no matter how closely I watch my diet there can always be hidden gluten in products that I am totally unaware of. You are so right, we more often than not don't get any followup at all unless we stomp our angry feet and demand we get some care on this.

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    I never got any care for my celiac disease, and certainly no follow up care. I had a very hard time even getting doctors to test me for it, despite the fact that I had suffered with the classic symptoms for all or most of my life. I was always sickly, anemic, short and skinny.

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    Guest John R. Green

    Posted

    After being diagnosaed with celiac disease and being sent to a nutritionst, I was not made aware of any further followup or care being necessary. Other than following a gluten-free diet.

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    Guest Marge Ransom

    Posted

    I agree, what follow-up care? Since my initial diagnosis it hasn't even been mentioned. I'm wondering if it is something Medicare won't cover?

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    What follow-up care? Our PC agreed with the celiac diagnosis after I found what he had by research of his symptoms. He almost died, after a severe diverticulitis attack and the doctors didn't know what was wrong with him. "Just stay away from gluten" is the only treatment that we know about and was told to do. He was 76, is now 81, and is experiencing loose stools. The new PC is doing stool cutlures for parasites and C-Diff. He also has diabetes, PAD, hypertension, atherosclerosis. and diverticulosis. A dietary challenge for sure! I don't think most doctors know they are supposed to followup celiac disease.

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    I have had celiac disease for over 5 years. I get no follow up at all. If I ask a question, no answer. The doctor I started with was great, but moved out of area. My regular doctor did say she would check my blood once a year for vitamin levels. With my muscle spasms, I now know from experience what vitamins I need. My doctors are no help at all.

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    Guest Luann Brown

    Posted

    I agree with above. WHAT FOLLOW UP!? I was diagnosed 23 years ago. I was my doctor's FIRST celiac patient and he was THRILLED to have me. He was great and insisted on regular visits. 5 years later, my insurance changed. I have had several serious bouts and ALL the doctors have done VERY LITTLE for me. I really believe they have no idea how to handle someone with 23 years of gluten-free!

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    This is true of our experience, too. Primary care physicians don't know what to do to assure celiacs of optimal care and follow-up.

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    So true! Eight years ago, I went gluten-free after suffering, losing 20 pounds, having my gall bladder removed, and having my gastrointestinal doctor tell me nothing was wrong with me and maybe I would benefit from hyphosis. After doing my own research, I went on a gluten-free diet, and was miraculously better within 2 days. When I went to make an appointment with a supposed celiac specialist in the area, I was told I had to wait 2 months. When I finally saw him, he said I had to go back on gluten to give me an official diagnosis. I told him that I would dig a grave and jump in before I would eat gluten. So, he just told me to stay on the diet and released me - no concern for a followup. I think most doctors just don't know where to go with it.

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    Take a previous copy of the lab test for diagnosis of celiac disease; the tissue transglutaminase IgA antibody test. Take it to your health care provider and "tell" them you want this lab test. Call the lab testing company and ask for the test code. Give this to the doctor and tell them this is what you want. It works for me.

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    Guest George Stewart

    Posted

    I was self diagnosed with celiac disease at after 40, after 35 years of symptoms. Many general practitioners and specialists did not diagnose the problem over the years.

     

    I have very little follow up care at this point from my gastrointestinal doctor. My PCP checks into my complaints, but related problems such as neuropathy, abdominal pain, and other issues are addressed individually without any coordinated care.

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    Ha! Follow up? I was diagnosed in 2007 and a new doctor I just got about six months ago mentioned that I should be monitored, but that was the first I heard of it. 5 years ago, the gastroenterologist basically handed me my diagnosis and wished me the best of luck. Suggested I go look at a couple of websites. That's it. I think my doctor now actually is going to do something but I didn't even know there was SUPPOSED to be follow up until recently.

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    I echo the "what follow up care?" sentiment. Two doctors have said to me that as long as I'm not eating gluten I'm fine. All three of my doctors act like I'm a hypochondriac when I try to discuss what tests I should have and what supplements I should be taking.

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    Guest Christine

    Posted

    I couldn't agree more. If a patient presented with diagnosed heart problems or diabetes, there is immediately recognised attention and follow up. But "'coeliac disease?' It's only a fad." Or "If you go gluten-free you'll open yoursef up to celiac disease," both of which are total rubbish. It's like saying if you cut out sugar you're up for diabetes! However, in the remote West Coast of New Zealand where we moved for my husband's job we discovered a highly competent South African general practitioner who immediately improved my quality of life with his interest and expertise in celiac disease. I am indebted to him and all physicians whose knowledge and empathy allows us to lead a normal life. Thank you!

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    Guest Libby Sykes

    Posted

    What follow up care? I once found an article that explained exactly what follow up was necessary and took it to my doctor. She asked if she could keep it and of course I let her thinking that finally someone would help. Next visit she said she didn't understand what I wanted her to do.

    My daughter asked the doctor at Madigan hospital to test her to see if she was getting hidden gluten. The doctor had no idea how to even order the blood test.

    Finally found a doctor who moniters my osteoperosis and checks my vitamin levels but doesn't think it's necessary to do a blood test to see if I'm getting hidden gluten.

    I really haven't found a doctor that knows much about how to diagnose let alone follow up.

    As far as I know, the only way to know you have celiac disease is to have a biopsy of your small intestine. Mine was not found by multiple blood tests. It was found in trying to determine a reason I was losing my iron and being very anemic. That resulted in having a paraesophageal hernia repair. However, since I was diagnosed with celiac disease, I have followed a gluten-free diet but NO follow ups have ever been ordered by the doctor. I plan to contact him.

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    I believe that most gastrointestinal doctors don't understand the need for follow up. I agree with the author "what follow up?". Plus not many Internists even understand the scope of the disease. You are on your on and you must be proactive with your own care.

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    Guest Barbara Ross

    Posted

    Follow up? Ha ha. I was diagnosed over 3 years ago and my doctor still doesn't really believe I have anything to worry about. This, after a positive biopsy and almost complete recovery from all symptoms I had been having. I do all my own research and then tell them what to do. It's pathetic.

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    "Anecdotally, many patients with celiac disease feel that they must manage celiac disease on their own,†- This certainly matches my experience thus far.

     

    Where can one find the latest follow-up procedures recommended by the American Gastroenterological Association (AGA)?

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    I was "diagnosed" by my endocrinologist after he observed that my hyperparathyroidism stopped once I went on a gluten-free diet and vitamin D therapy, and that my osteopenia improved. The blood tests he had given me were inconclusive, but the other evidence persuaded him that gluten was the problem. I see him every six months, and he does blood tests to make sure all is well.

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    Guest Nancy Mac Mullen

    Posted

    I certainly agree. I really feel most patients have to learn on their own with little guidance. Follow up may be a long year ahead. Hopefully you are following the diet carefully. Thank goodness for sites like this.

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    Guest Bluerauderfan

    Posted

    My daughter had problems. The nurse called to tell her she had celiac disease. NO follow up, NO scheduling with nutritionist... nothing. As a mother, it makes me upset to see how this is treated. Most auto-immune diseases cause outlaying problems. This is the way she found out about it: vitamin deprivation, hair falling out, etc.

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    Guest Katie Campbell

    Posted

    The reason I said this article is so good is because of what it doesn't say. Even if you are testing positive, (and really what sort of tests are there, what medicine is there to take?) will elimination be the only cure? At this point of having this disease for 10 years, I have found the only way to stay safe is to watch what you eat and read as much as possible so that you can be educated about the topic.

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    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.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764