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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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    HOW MEDICAL MARIJUANA HELPED TREAT MY ONGOING CELIAC DISEASE SYMPTOMS


    Molly Hallström

    Celiac.com 01/04/2017 - Ever since I was a young girl I have always had a bad stomach. Last year, when I was 16, I decided to move to London. Circumstances became difficult, and I ended up becoming physically and mentally ill, which included anorexia nervosa and then onset depression and trauma, as well as almost crippling anxiety. Things led to me getting so ill that I went to a doctor who noticed that I had serious mouth ulcers—and this is what finally led them to diagnose me with celiac disease, after what seemed to be months of suffering.


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    At the time my diagnosis seemed to make a lot of sense because of the stomach pains I had, especially after eating certain foods. My symptoms included much confusion, dire pains, and resulted in my having a phobia of food. As most celiacs know, currently there is no medicine available to treat celiac disease, and the only treatment is a strict gluten-free diet.

    I got diagnosed in late January 2016, and have been on a strict gluten-free diet ever since, and although I believe this has helped me a lot, more than nine months later, I still often have the same symptoms. They vary in levels and are sometimes uncomfortable and very painful. Sometimes I have migraines, stomach bloating, churning, etc., all of which are not very nice.

    Let me explain a little about what celiac is. It is an autoimmune disease where the immune system kills off tissue in the small intestine in response to ingesting gluten. This can make eating more difficult, and a lot of the time I am left in pain with nothing to do but sit in agony and wait for it to stop.

    But what if there was something else out there that could help with ongoing symptoms? I recently discovered that thousands are being helped by using cannabis to treat their celiac disease symptoms. Marijuana is gluten-free and for some, can ease the painful symptoms. Special note: This approach is NOT meant as a substitution for a guten-free diet, but for some people, like myself, it can offer additional symptom relief for those who need it.

    Reset.me has this posted:
    "Marijuana 'cools the gut,' in which it slows down the muscle contractions that move food through the stomach and intestines and reduces the secretion of liquid into the intestines associated with diarrhea (one of the most severe symptoms of the disease)," Deno writes. "Marijuana also controls the muscle spasms associated with diarrhea. It also increases appetite and can offset the inefficiency in the Celiac's ability to absorb nutrients from the food you eat."

    "People with celiac in some states in America are able to get access to to medical marijuana if they have chronic pain. The rest of us [celiacs] are left with buying illegally or simply avoiding this one plant that may be the most effective celiac treatment of all!"

    HelloMD.com states:
    "Inflammation can be suppressed by activating the cannabinoid receptors, CB2, on immune cells. Though there have not yet been clinical human trials, this study opens up new avenues to investigate as possible treatment options for autoimmune diseases. Though this study only looked at THC, CBD is also known to help the immune system. CBD helps repair the bodies [sic] ability to recognize the difference between normal internal body functions and foreign entities, keeping the body from attacking itself."

    Remember, Marijuana is not a cure, but is a natural anti-convulsant and can suppress seizure activity. It is also anti-inflammatory, and has helped people with other autoimmune diseases such as rheumatoid arthritis, psoriasis, Type 1 diabetes, multiple sclerosis, and many others.

    I smoked cannabis even before I was diagnosed, and I always found that it settled my stomach. I have since spoken to many other people with celiac disease online and face to face, and I've done a fair amount of research to find out if there are other celiacs who experience the same relief from their symptoms.

    While doing my research, I came across an interesting post on Medhelp.org by Betherie Mommi about a girl with celiac who also suffers with IBS and has a history of chronic pain, nausea and, just like me, eating disorders. With such a weak stomach it's always hard to eat things without discomfort. She goes on to say that she uses medical marijuana becuase the meds that the doctors gave her have not helped with the pain and side effects of the medications, and the marijuana has also helped her appetite. She goes on to give one of the best descriptions of stomach pains, which I also get, but had difficulty explaining: "like velcro made out of razor blades being pulled apart in certain parts of your belly." She goes on to say that it also gave a sense of community back to her life, as you do sometimes feel excluded as a celiac, because there's a lot you have to miss out on. Betherie Mommi was a medical marijuana patient.

    I really notice the effects it has on me, and how it relieves my stomach pains, including providing relief from the confusion and anxiety that I've experienced. I feel that other people shouldn't have to go through what I've had to experience, and I really do believe that this is an exceptional way forward for some people.

    You can find CBD only "vapes", liquids, and waxes, which are also supposed to help, but in my case the THC, even if it is a low dosage, was essential to get rid of the pain.

    What I have described in this article is only what has helped me, after much suffering, and I urge all celiacs to do their own research and speak to their doctors before making a decision. I really believe that this approach could be helpful to so many others, but I also realize that it may not be for everyone.

    Sources:



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    Guest Sandra Alexander

    Posted

    My diagnosis says, MS and Addison's disease secondary to celiac disease. MS has been benign for 10 years due to cannabis and a gluten free diet.

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    Guest Eileen Dueck

    Posted

    A suggestion for Molly. People that have celiac will also most likely have intolerance to any and all dairy products. After realizing I have celiac I also continued with problems. My doctor told me about the dairy problem. I tried it and it was amazing how much it helped.

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    To all above. As a celiac recommend you check out "gelatin". Suffering "leaky gut" effects, the use of gelatin repaired the gut in about three weeks. It acts like an elastic bandage that glues to the gut. An organic food that is readily available.

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  • Related Articles

    Kim Hopkins
    Celiac.com 06/24/2009 - If you are like the majority of people diagnosed with celiac disease, it probably took you many years of experiencing debilitating symptoms, talking to multiple doctors who gave you varied theories and diagnoses, thinking that you would never feel better…before you finally got it figured out.  Whether you had a positive experience with your health care professionals or not, hearing the diagnosis can lead to feeling lost and unsure of what to do next.  It can be quite overwhelming.  After all, food plays an important part in our culture – it’s how we share special moments together, celebrate, and nurture one another.  A big sense of loss can overcome someone when they hear that they can no longer eat wheat, barley, rye, and contaminated oats.  Some people say they go through the roller coaster of emotions similar to the grieving process.
    Can you make the necessary lifestyle adjustments to feel better and regain your health?  Absolutely!  Everyone’s pace is different and you need to give yourself time.  Is there a way that may help you to adjust a bit more quickly and with less frustration?  Yes:  consider hiring a personal coach that specializes in food challenges.
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    Coaching is a powerful, ongoing relationship which focuses on clients making important changes in their lives.  Coaching uses a process of inquiry and personal discovery to build a client’s level of awareness and responsibility, and provides the client with structure, support, and feedback.  The coaching process helps clients to both define and achieve personal and professional goals faster and with more ease than would be possible otherwise.   In coaching, the focus is on designing the future, not getting over the past.
    The field of coaching is booming and there are many coaching niche areas.  Business coaching for executives and teams has become quite popular.  Coaching children and teens to help them excel with academics is on the rise, as is parenting coaching.  Many small business owners higher coaches to help them increase revenue.
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    Dr. Vikki Petersen D.C, C.C.N
    This article originally appeared in the Spring 2010 edition of Celiac.com's Journal of Gluten-Sensitivity.
    Celiac.com 10/22/2010 - More and more we’re hearing from frustrated patients who, despite being vigilant about their gluten-free diet, continue to suffer health problems.
    I have been involved in the field of celiac and gluten sensitivity for over 15 years and am delighted by much of the recent increased awareness and attention given to the area.  But I’m also concerned about the lack of assistance given to many patients who have been definitively diagnosed with either celiac disease or gluten sensitivity.  While being correctly given the advice to not eat gluten, they are not provided with a follow-up program to address and treat the secondary effects of gluten sensitivity.  This oversight condemns many to ongoing ill health.
    The focus of this article is on the types of conditions we see clinically with our patients, some of the recent research that corroborates our findings, and steps you can take to address the underlying root cause of these problems.

    Leaky Gut
    Also known as increased intestinal permeability, a leaky gut refers to a loss of integrity of the lining of the small intestine.  Recall that the small intestine is approximately 23 feet in length and has the surface area of a tennis court.Gluten, in the sensitive individual, is a known cause of leaky gut, but in a perfect world the elimination of gluten would allow healing to occur resulting in an intact, healthy intestinal lining.
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    Let’s take a look at each of these individually:

    Infections
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    This segues nicely into the next area I want to discuss – dysbiosis or imbalance of the friendly bacteria in the small intestine.

    Dysbiosis
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    Dairy Sensitivity
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    Nutritional Deficiencies
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    Discovering that you’re gluten sensitive and following the diet should be rewarded with dramatically improved health.  If that is not the result, other problematic factors need to be isolated and treated.  Such a program is not difficult and is well worth the effort.
    Please let me know if I can answer any further questions.
    To your good health!


    Jefferson Adams
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    Jefferson Adams
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    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
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    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
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    Source:
    cnbc.com

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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