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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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 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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    YOU'RE NOT CRAZY: COPING WITH CELIAC DISEASE & GLUTEN SENSITIVITY


    Melody Stiles, MSW, LCSW, MAC, LCAC


    • Journal of Gluten Sensitivity Summer 2012 Issue


    Celiac.com 12/29/2017 - Do you remember the moment when you were diagnosed with celiac disease or gluten sensitivity? Most people I talk to have it etched in their memory. After all, the information is life transforming. Yet, I doubt if most of us understood the enormity of the information until time passed and we had the opportunity to actually fully understand what it meant besides the gluten free diet (GFD).


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    Along with having to learn that gluten is everywhere, we also learn that having to eat differently is, to put it mildly, upsetting. In fact, the psychological impact of living with celiac disease or gluten sensitivity usually involves depression and anxiety. There are other emotional responses as well; these include grief and, for some, trauma (depending upon how long it took for a diagnosis and how sick the person became).

    Celiac disease or gluten sensitivity is such a difficult illness to live with because of the social and cultural fallout we are forced to deal with as a result of having to be on the gluten-free diet. We quickly learn how difficult it is to negotiate the world having to live on the gluten-free diet.

    Let's start with how much food is involved in normal social situations: a family gathering, a party, going out to eat for any meal, a wedding, and for kids of all ages, school, camp, etc. Until it happens to you, it is very difficult to comprehend the enormity of the change and its limiting impact. Change is something people do not like, even if that change is good. And we most certainly do not like to change the way we eat. Just talk to anyone who has ever been on a diet. Unfortunately for those of us with celiac disease or gluten sensitivity, the diet is not optional. And, it's hard; so hard in fact that some people cheat. And ultimately, they pay.

    Culturally, food is hugely important. Food is almost always involved in every occasion that involves spending time with people, dating, any rites of passage including bridal showers, baby showers, weddings, and birthday parties. And there are the holiday gatherings. Every single time you are invited to attend one of these events, you have to stop and think about whether it's worth it to attend. If you go you will either have to eat before you go, take your own food or ask the hostess to make special arrangements. You not only feel like a burden upon those in your social and family circles, but you find yourself stressed out by the mere prospect.

    And the social consequences are enormous. The very people life you have always relied upon for support, begin to drift. You find yourself shocked and saddened by the reactions and behavior of family and friends who you never suspected of being unable to handle change in you. It's hard not to take personally, but their reaction is not about you. They most likely react this way because your life is now too restrictive for them. Just like you, they want to be able to go wherever they want to eat, serve whatever they want to serve and not have to think about it twice. But unlike you, they still can. And this inevitably leads to conflict. Then your feelings get hurt and they are frustrated and you simply stop getting together as often because, in the end, it's just easier.

    I believe that is why people with this disease enjoy socializing with others who are also living on the gluten-free diet. We are trying to avoid the social isolation, loneliness, and shame. We want to forget our fear of the unknown, feeling like we no longer fit in, as if we are lost, or in denial and maybe needing more information. In a nutshell, we feel crazy. Because we cannot do something most people can do: eat normally. These feelings are only a portion of what I have learned about people who are forced to live on the gluten-free diet experience. Parents of children impacted with celiac disease or gluten sensitivity share these feelings as well.

    In the end, you need to give yourself time to fully understand the gluten-free diet, and in order to keep yourself safe, become vigilant to all of the hidden places gluten can hide. We do know that those who stay on the gluten-free diet and avoid gluten as much as possible feel better emotionally much more quickly than those who do not. I cannot underestimate the need to consult a good dietician. You need to find others living on the gluten-free diet; they can often be found through local support groups. Some of us might find it helpful to talk with a therapist who is familiar with celiac disease, gluten sensitivity or chronic illness in general.

    Lastly, you also need to remind yourself that you cannot change how your body reacts to gluten. And you cannot change other people. What you can change is your perception and attempt to understand that while we may require a different diet to stay safe and healthy, those who do not have our diagnoses do not. Our experience of life, then, is changed. We have had change forced upon us. Our friends and family have not. The only thing different to them is that we are telling them we can't eat the way we used to. I think the sooner we accept these facts, the sooner those around us will as well.

    You are not crazy. The way you have felt since the day all of this began for you is perfectly normal. Yes, some people have serious depression in addition to celiac disease and gluten sensitivity. This requires treatment in addition to the gluten free diet. For some, the depression and anxiety are alleviated over time because of the gluten-free diet and subsequent healing. In the end, this is a difficult but doable road and you are in good company.


    Image Caption: Image: CC--YJ Jeon
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    Guest Barbara

    Posted

    I have had celiac disease for 20 years. Most of the time, things are ok. If I have a problem, it is dealing with the "foodies" in my family. One in particular always talks about the "delicious" food he has eaten, at home or in a restaurant, has made or is/ was making. This is recipe level detail. I have asked others to please explain that this is hurtful. Guy can't help himself. I can deal with everything but this. I can eat the same menu in restaurants, my limited menu at home ( am on FODMAP diet too). When he is around we always eat out. Oh, yes a plug for Legal Seafood which has true gluten free items on its menu. These are adaptations of regular items. Restaurant chain on East Coast. Love going there. Therefore , insights in this article are very helpful. It's the only article of its type I have seen. Thanks for writing it. Even now, I do have some of feelings described.

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    Guest Lori

    Posted

    The article is great. My feeling exactly. The picture heading the article is disturbing.

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    Guest Laura

    Posted

    It is a truly devastating disease both emotionally and physically. First came severe malnutrition with its associated diseases and near death event with resulting surgery. These too are factors to consider.

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    Guest Cindy

    Posted

    What a totally depressing article. Living with celiac is difficult and yes, one has to make continuous investigated decisions when dining out, traveling and attending many social functions. I can understand that it can be depressing, however knowledge and education is the key as well as speaking up for yourself. I have had celiac nearly 8 years and have traveled the world without seriously getting ill. Do I get upset when I have to send my meal back because someone has messed up and everyone else is done eating? Heck yes! But it doesn't ruin my outing as I have learned to be specific but to expect error. If your friends have dropped you because of celiac, then they truly were not friends. Friends are supportive and make adaptations. Yes, I still have some who think a bite won't hurt me, I just keep educating. All of my friends ask about restaurants suitable to me and dishes I can have. And if I choose to take my own food to make it easier, then so what? Maybe I am just fortunate, but the article would have been more helpful in stressing adaptability and acceptance.

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    Guest Thomme

    Posted

    This is one of the more important articles I have read on coping with a diagnosis requiring a GFD. Thank you.

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    Guest Julie Mackay

    Posted

    Hi, wow I've just today been to my GP explaining my overwhelming anxiety and panic attacks. I'm just on 4 years diagnosed coeliac but at 57 year old I lived on oxys antidepressants tri monthly B12 injections for severe vitamin B12 deficiency, etc. for 10 years before changing GP's and instantly diagnosed. Sadly though the permanent damage, severe chronic peripheral neuropathy, IBS, oesophageal infections, liver damage severely damaged tooth enamel, tinnitus, aged a gazillion years lol and unable to work, have all left me a physical and mental train wreck. I can totally relate to your story, I've lost all friends and half my family.. nobody even bothers to invite me now and I don't even care. I'm to see a psychologist (3rd try) next week to try to sort through my issues. But my question is how can I sort through or resolve an issue /problem that's never ever going to go away. My go asked if I have suicidal thoughts and no I don't but I'm dammed sure I don't want to live like this.

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    Guest Elisabeth Gerritsen

    Posted

    Thanks for this article. I will print it out to show if needed, because people find me weird and I am avoiding going out and gatherings because I am not only a celiac but I also have a lactose intolerance. I shop on internet at a gluten free web shop and most of the time all goes well. But this time I bought fresh made pastries for the 31st of December (Dutch treat) who should be gluten- and lactose free. Poor me, I spent all night and the half of next day in the bathroom! So not a happy New Year for me. This didn't happen for the first time. So now I am afraid to buy anything home made. I live like a hermit now and that is no fun. I am really depressed. What to do? My dietitian call me when she has a new celiac patient, for advice. And she is supposed to be the expert!

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    Guest Cynthia Savitt

    Posted

    Thank you so much for writing this article. I've had celiac disease for 10 years and it never gets any easier because of the social/cultural/ethnic traditions associated with food. Food is the ultimate social experience. I never cheated, except on occasion with french fries, but I'd ask the restaurant when they last changed the oil in the fryer. Occasionally I would end up on the toilet, but no serious reaction until this past year when I mistakenly ate several cookies that I thought were gluten-free and weren't. I became violently ill within a few hours and never felt so sick in my entire life. I almost called an ambulance to take me to the emergency dept., but I didn't think I could withstand the trip to the hospital, since I was wretching every 15 minutes. Since then, I'm completely paranoid about eating out, whether it's a restaurant or a friend's house. I find myself reading labels on the food I buy 2 and 3 times, even though I know it's gluten-free. I never want to feel that sick again.

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    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    CLASSIC CELIAC DISEASE SYMPTOMS
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

    To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

    That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 
    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center