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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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    LIFE IN THE TRENCHES—RECOVERING FROM CELIAC DISEASE


    Jennifer Arrington

    I would hate to add up all the hundreds of dollars I have wasted trying to get healthy.  Now, however, I get healthy by focusing on one thing:  making my intestines healthy.  If my intestines are healthy, I can absorb food.  If I can absorb food, my body will be receiving the nutrition it needs to function, and thus I will be healthy.


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    Of course, rule number one for all of us is to stay gluten free.  But, focusing on avoidance alone, can get depressing.  Instead, I like to focus on what I can do to strengthen my digestive system.  That way, all the good gluten free food I am consuming can actually benefit my body.  What good is eating healthy if you are unable to absorb the nutrients?  Pouring healthy food into a compromised gut would be as wasteful as pouring dollar bills over an ATM machine and hoping in vain to strengthen your bank account balance.

    Research shows that those of us with celiac disease/gluten intolerance often have decreased absorption despite following a strict gluten free diet.  Scott Adams summarized one of these articles on the celiac.com website back in 2003.  The article by Lee SK, et al. entitled “Duodenal Histology in Patients with Celiac Disease after Treatment with a Gluten-free Diet” implied that even though patients may feel better on a gluten-free diet, there may still be damaged intestinal areas that are incapable of optimal nutrient absorption.  Since specific nutrients are absorbed along specific locations in the small intestine, this can have long-term ramifications.  For instance, the proximal portion of the intestine is the site for absorption of vitamin B6 (pyroxidine).  If that portion is damaged, there will be decreased absorption, and your body will be deficient in B6.  You may then experience a range of neurological symptoms such as nervousness, irritability, and shakiness.  And, as happened in my case, you may see a doctor, only to be told you are having anxiety attacks and be handed a prescription for a mild tranquilizer.  Thankfully, I discovered that a good B6 supplement (Solgar “Magnesium with B6”) was all I needed and threw away the offending prescription, but this serves as an excellent—albeit oversimplified—example as to why we have to focus on improving the health of our intestines.

    Before I go on, I do want to say that the products listed below do not benefit me financially in the least.  Additionally, these are the products that work best for my body.  You may find a different brand works better for you, but as long as our focus is on getting those intestines healthy, we are all heading in the right direction!

    So, read on about what I personally consider the top four intestinal healing supplements…

    The first and best all-round product I have found that truly aids in restoring the intestinal lining is a glutamine supplement put out by a company called Metagenics.  The supplement, called “Glutagenics”, contains glutamine, licorice root, and aloe vera.  While studying for my masters in nutrition at Texas A&M University, we learned that glutamine is a key amino acid that aids in restoring the intestinal lining in patients that are transitioning from being tube-fed to a normal diet.   So, when my own chiropractor suggested this supplement and mentioned it contained glutamine, I purchased it and have been taking it on and off for three years.  

    Glutagenics is available online through various websites that carry the Metagenics brand. The supplement is unfortunately a bit cost prohibitive, but you can shop around for other brands that contain a similar blend, or buy the three active ingredients separately. Unfortunately, this did not work for me (I have an expensive gut), but it may for you.

    The next product is a good omega-3 fatty acid. Omega-3 fatty acids have so many benefits that even if you weren’t working on building up your intestines, they would still be beneficial. During my graduate research, I was fortunate to be part of an ongoing study on the mechanism whereby omega-3 fatty acids reduce the inflammatory response. Obviously, when our intestines are damaged, there is plenty of inflammation. So, including omega-3 fatty acids in our diet is vital.

    Thankfully, omega-3 fatty acids are getting easier and easier to come by. My family eats the high omega-3 brand eggs and the Smart Balance peanut butter and butter spreads. You can also purchase wonderful oil blends by Nordic Naturals. My favorite is the lemon-flavored Omega-3 liquid. The lemon flavor truly masks the fishy taste and even my children swallow the oil with minimal grumbling. Nordic Naturals is quite expensive (around $20.00 for 8 oz) but if you compare the amount of DHA you are getting per serving, it is definitely the most DHA for your dollar!

    Another great healing nutrient is zinc. Zinc is wonderful for wound healing- you’ll see it in many topical creams, but it also helps restore the intestines. Metagenics puts out a great supplement and their products are great for sensitive individuals. I find that 10mg works best for me. I don’t take it every day – too much will give you a bad taste in your mouth. Once I get that bad taste, I know I need to go off it for awhile.

    Finally (for now), find a great probiotic. The one that everyone recommends, by Garden of Life, contains wheat grass, so we have to avoid it. I do extremely well, however, on a product called Lacidophil by Xymogen. My energy levels actually improve on this brand. Xymogen has their own website where you can purchase products directly. Taking a good probiotic restores a healthy balance to your gut flora, which aids in overall health and digestion. I have just recently ordered one from Emerson Ecologics through a natural doctor and it’s supposed to be even better. It has many more strains of the good bacteria so I’m going to try it as soon as it comes in.

    Of the four products listed above, the two that I take daily are the probiotic and omega-3 oil. The other two I take on an ‘as-I-need-it’ basis.

    Unfortunately, our bodies don’t tolerate a lot of extra supplements, so go slowly and only add one at a time. Keep track of how you feel. You may never tolerate the mass quantities that some companies will try to sell you. But, since you are your own best manager, work with yourself slowly and patiently and you will find your health improves over time.

    May God bless you with the wisdom and discernment you need to live a healthy and vibrant life!



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    Guest Helen  Hanson

    Posted

    Enjoyed your article and agree with needing to repair the intestines...after colonoscopy and an endoscopy...having been clear of gluten for over 6 months, my doctor said I wasn't gluten intolerant....that I had lymphatic colitis! (I wasn't going to eat gluten again just to prove him wrong! I used Nature's Sunshine's Intestinal Soothe & Build, Food Enzymes and Protease H P and Anti-Gas Formula. I also take Omega 3 along with B-vitamins which seem to be helping heart arrhythmia and my frame of mind.

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    Guest reneé heising

    Posted

    Very helpful and informative! Thanks for taking the time to put this info into an article!

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    Good information for the most part, but individuals might want to check whether or not they can have the wheat grass, according to most sources, it does not contain gluten.

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    Guest Jennifer

    Posted

    Good information for the most part, but individuals might want to check whether or not they can have the wheat grass, according to most sources, it does not contain gluten.

    Thanks for the info on wheat grass - like most of us, I see "wheat" and I put the product back on the shelf. I appreciate the correction.

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    Very helpful and it makes sense to focus on healing the poor little small intestine after the damage it suffers when gluten is ingested. I had heard of glutamine and did not know about the healing properties for the small intestine. I will definitely look into this further. I feel wheat grass that is freshly juiced is fine for me. I did my research and felt that it would be safe and tried it for 6 days with a friend who owns a juicer. I felt no ill effects and I am one of the people who does experience symptoms when gluten is unfortunately ingested.

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    Enjoyed your article and agree with needing to repair the intestines...after colonoscopy and an endoscopy...having been clear of gluten for over 6 months, my doctor said I wasn't gluten intolerant....that I had lymphatic colitis! (I wasn't going to eat gluten again just to prove him wrong! I used Nature's Sunshine's Intestinal Soothe & Build, Food Enzymes and Protease H P and Anti-Gas Formula. I also take Omega 3 along with B-vitamins which seem to be helping heart arrhythmia and my frame of mind.

    Thanks. I have the anti-gas formula and am debating on whether to try it.

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    Guest johnty Hickman

    Posted

    I agree with the posts above about wheat grass. I am extremely gluten intolerant, yet I consume wheat grass with out a reaction. I was told below 4" of growth there is no gluten.

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    Guest Alicia khuong

    Posted

    I found the article interesting and a first stepping stone to more information about diet.

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    Guest C Brown

    Posted

    This was an ok article... I was diagnosed with celiac a few months ago, even though I've probably had this for years! I was just ignore the signs and symptoms. I really didn't get much from this article with all the research I've been doing, I don't think she really gave the best information. Does anyone reading this know why you can't tolerate gluten? NOT BECAUSE YOUR ALLERGIC. It's because bacteria/microbes take over your intestinal flora causing hydrogen, a few different kinds of acids, mucus, and eliminating enzymes! One specifically is lactase! It's the first to go, in celiac and the last to be regained after the intestinal disease has subsided. How do you get it to subside you are wondering? Diet! It's called the Specific Carbohydrate Diet! look it up! Read reviews! It can be cured if your patient and disciplined... might take a year but you'll get your life back to normal.

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    This was an ok article... I was diagnosed with celiac a few months ago, even though I've probably had this for years! I was just ignore the signs and symptoms. I really didn't get much from this article with all the research I've been doing, I don't think she really gave the best information. Does anyone reading this know why you can't tolerate gluten? NOT BECAUSE YOUR ALLERGIC. It's because bacteria/microbes take over your intestinal flora causing hydrogen, a few different kinds of acids, mucus, and eliminating enzymes! One specifically is lactase! It's the first to go, in celiac and the last to be regained after the intestinal disease has subsided. How do you get it to subside you are wondering? Diet! It's called the Specific Carbohydrate Diet! look it up! Read reviews! It can be cured if your patient and disciplined... might take a year but you'll get your life back to normal.

    I've done the specific carbohydrate diet, and it really does help. However, as a celiac I have an autoimmune reaction to gluten, which will not go away no matter what I do. Remission, sure. But specific carbohydrate diet won't suddenly make you not celiac anymore.

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    Good information for the most part, but individuals might want to check whether or not they can have the wheat grass, according to most sources, it does not contain gluten.

    yes I agree, even the official celiac website in Australia says wheat grass as a juice is fine, the only problem being in the powdered form there may be additives which can contain gluten.

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    Celiac.com 02/26/2007 - Celiac disease is an inherited autoimmune disorder. Even though celiac disease is genetic, and generally runs in families, it can sometimes be triggered by, or become active for the first time after, surgery, pregnancy, childbirth, viral infection, or severe emotional stress. People with untreated celiac disease typically have abnormally high levels of associated antibodies including anti-gliadin, anti-endomysium and anti-tissue transglutaminase. The presence of these antibodies is caused by an immune system reaction to the presence of gluten in the body.
    When people with celiac disease eat foods or use products containing gluten, the response from their immune system damages the tiny, fingerlike protrusions lining the small intestine, called villi. Properly working villi allow nutrients from food to be absorbed into the bloodstream. When villi are damaged, vital nutrients go unabsorbed. In addition to vitamin deficiencies and their associated maladies, left untreated, villi damage can result in full-blown malabsorption, accompanied by nerve damage, wasting, and organ distress and failure.
    Until fairly recently doctors believed celiac disease was quite rare, and only affected about 1 in 5,000 people. It was also thought of a disease that mostly affected babies and very young children. Recent studies, however, put the estimate of celiac sufferers at 1 in 133 people in the United States. Most people with celiac disease still dont know that they have it.
    More alarmingly, many experts believe that Non-Celiac gluten intolerance could be upwards of 15 times more prevalent than full-blown celiac disease. According to some experts up to 15% of people worldwide—a full 1 in 7—are gluten-sensitive or gluten-intolerant. These people often test negative or inconclusive for Celiac Disease, but can still suffer the same symptoms and long-term problems when they ingest gluten.
    Signs and Symptoms of Celiac Disease
    Its very important to diagnose both celiac disease and Non-Celiac gluten intolerance early before any serious damage to the intestine occurs. However, both can be difficult to diagnose because their symptoms are easily confused with other intestinal disorders, such as irritable bowel syndrome or lactose intolerance, thus many people may never discover that they have some level of gluten sensitivity.
    Some common general symptoms of celiac disease are diarrhea, abdominal pain and bloating, and weight loss. People with the disease may feel overly tired, and they may also be irritable or depressed. Some have skin rashes and mouth sores. Teens with undiagnosed celiac disease may go through puberty late.
    Symptoms of Celiac Disease can vary greatly from individual to individual, and even among family members. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed. In fact, irritability is one of the most common symptoms in children.
    Obviously, since so much growth and development crucial to human well being takes place in infancy and childhood, and since so much of that development hinges on proper nutritional absorption, any condition which hinders absorption is especially important diagnose and treat in the earliest possible stages.
    More specific symptoms of celiac disease may include one or more of the following:


    • behavioral changes
    • bone or joint pain
    • chronic diarrhea
    • delayed growth
    • failure to thrive in infants
    • fatigue
    • gas
    • infertility, recurrent miscarriage
    • itchy skin rash called dermatitis herpetiformis
    • missed menstrual periods (often because of excessive weight loss)
    • muscle cramps
    • osteoporosis, osteopenia
    • pale, foul-smelling, or fatty stool
    • pale sores inside the mouth, called aphthous
    • recurring abdominal bloating and pain
    • seizures
    • tingling numbness in the legs (from nerve damage)
    • tooth discoloration or loss of enamel
    • unexplained anemia (a low count of red blood cells causing fatigue)
    • weight loss / weight gain
    Screening for Celiac Disease
    A simple blood test can reveal high levels of anti-gliadin, anti-endomysium and anti-tissue transglutaminase antibodies, and is often used for initial detection among people who are most likely to have the disease, and who may need further testing.
    For anyone with a family history of celiac disease or of disorders such as thyroid disease, anemia of unknown cause, type I diabetes or other immune disorders or Downs syndrome, doctors may suggest routine screening. Otherwise, patients are generally screened on a case-by-case basis according to individual symptoms.
    If a blood test for gluten antibodies is positive, your doctor will likely order a biopsy to confirm a diagnosis of celiac disease. A biopsy is where your doctor microscopically examines a small sample of intestinal tissue, looking for celiac associated damage to the small intestine.
    To get the sample, your doctor inserts an endoscope (a thin, flexible tube) into your mouth, down your esophagus and into your stomach and small intestine to take a small sample of intestinal tissue to look for damage to the villi (the tiny, hair-like projections in the walls the small intestine that absorb vitamins, minerals and other nutrients).
    Non-Celiac Gluten Intolerance
    Many people with celiac disease are still screened using antiquated methods. After a positive serology test a patient might be given a biopsy (or not—depending on how high their antibody levels are—again elevated antibodies may mean gluten sensitivity), however, the pathologist who interprets the samples may not use the latest Marsh classification system to make the diagnosis, or they may use it but classify the samples incorrectly, any of which can lead to a missed diagnosis. Most people with gluten intolerance will never get tested at all, and if they do their results often end up in the "inconclusive" or grey area for the reasons discussed above. Consequently this undiagnosed or inconclusive group of people may miss out on discovering the simple and drug-free remedy of a gluten-free diet which will lead to a dramatic recovery for those with symptoms (many people with celiac disease or Non Celiac gluten sensitivity do not have any symptoms).
    For those who end up in the grey area of inconclusive test results, an elimination diet may be the only method to determine their problem. Many people discover that they have gluten intolerance only after they eliminate it from their diet. The more symptomatic the patient, the more obvious it will be when they eliminate gluten. For those with little or no symptoms this method may not work. Most elimination diets also exclude other common food allergens for several weeks such as soy, cows milk, corn, nuts, etc., and then the items are slowly added back to the diet while the patient pays close attention to any symptoms.

    Treatments for Celiac Disease
    There is presently no cure for celiac disease or Non Celiac gluten sensitivity, however, totally eliminating gluten from the diet leads to a full recovery in most cases, thus a 100% gluten-free diet is the standard treatment for celiac disease.
    To manage the disease and prevent complications, its essential to avoid all foods that contain gluten. People with celiac disease must avoid all foods made with wheat, rye, or barley. Including types of wheat like durum, farina, graham flour, and semolina. Also, bulgur, kamut, kasha, matzo meal, spelt and triticale. Examples of products that commonly contain these include breads, breading, batter, cereals, cooking and baking mixes, pasta, crackers, cookies, cakes, pies and gravies, among others.
    It is also important to avoid oats, at least during initial treatment stages of a gluten-free diet, this is because the effects of oats on celiac patients are not fully understood, and wheat contamination in processing is common. Thus, its safe to eliminate oats at least until symptoms subside and their reintroduction into the diet can be fairly monitored and evaluated. Avoid processed foods that may contain hidden gluten. Wheat flour is commonly used in many processed foods as a thickener or a binder.
    The good news is that by avoiding gluten your small intestine can and will begin to heal. Fortunately, the gut can and usually does heal. The majority of celiac disease and gluten intolerant patients who go on a gluten free diet experience a significant reversal of all symptoms and intestinal damage within year, and most begin to feel better within in a few days. In patients with severe damage the healing process may take years, and may require eliminating other offending foods from their diets in addition to gluten.
    Because the genetic makeup that leads to gluten intolerance cant be altered, a persons immune system will continue to react to gluten whenever it is ingested and the symptoms and problems will return if a person with celiac disease starts eating gluten again.
    health writer who lives in San Francisco and is a frequent author of articles for Celiac.com. 

    Wendy Cohan
    Celiac.com 10/19/2009 - Gluten intolerance in the form of celiac disease (a hereditary autoimmune disorder) or non-celiac gluten sensitivity, may affect virtually any part of the body. In it’s involvement in multiple health disorders, gluten intolerance is a major driver of health care delivery and associated costs.  While this may seem to be an outrageous claim to make, a discussion of the many ways in which gluten intolerance can negatively affect the body can illustrate this point. So, let’s work our way down from the top…
    Normal, healthy hair is usually glossy and thick.  An autoimmune disorder known as alopecia areata results in abnormal loss of hair, either in patches, or total body hair-loss, and is one of many autoimmune disorders associated with celiac disease. Malabsorption severe enough to cause malnutrition can also result in thin, sparse, fragile hair. One of the outward signs of hypothyroidism is thinning hair and a loss of the outer third of the eyebrow; hypothyroidism is strongly associated with celiac disease.
    Now let’s look at the brain.  There are, unfortunately, a large number of neurological disorders associated with gluten intolerance and celiac disease, including narcolepsy, depression, ADD/ADHD, Autism Spectrum Disorders, and schizophrenia. There are also movement and balance disorders associated with gluten intolerance, including ataxia - the inability to coordinate movements and balance (gluten ataxia, celiac ataxia, some cases of sporadic idiopathic ataxia). In some cases, when symptoms are severe, this disorder mimics other disorders such as Parkinson’s, Normal Pressure Hydrocephalus, and even Alzheimer’s disease.
    Headaches are a very common symptom of wheat allergy, as well as gluten intolerance.  Migraines are common in those with celiac disease and gluten intolerance, as are sinus headaches.  These symptoms often decline dramatically after excluding gluten grains from the diet. Sinus problems are common in those with celiac disease, gluten intolerance, and sensitivity to dairy products as well, and are often reversible by making dietary changes. Some people with celiac disease seem to have an altered, highly acute sense of smell – for unknown reasons.
    Night blindness associated with vitamin A deficiency is reversible when malabsorption is resolved and with the addition of a vitamin A supplement. Xeropthalmia, or chronic, often severe, dry eyes, is also related to severe vitamin A deficiency.  It is rare in developed countries, but can be found in some people with malnutrition due to celiac disease.
    Apthous stomatitis is the name for the mouth ulcers associated with food allergies and intolerances, and is strongly associated with celiac disease and gluten intolerance. Even people who do not have gluten sensitivity get these once in a while but in those with gluten intolerance they are more frequent and especially long-lasting.  Dental enamel defects are strongly associated with celiac disease.  While they are usually identified in childhood, they can continue to cause problems throughout life, because they often lead to more frequent dental cavities.  Halitosis, or bad breath, is a reflection of our internal environment and gastrointestinal health, and is often present in those with untreated celiac disease, gluten sensitivity, or gut dysbiosis – an upset in the balance of our internal microorganisms caused by poor diet and other factors. And, one of the autoimmune disorders strongly associated with celiac disease, and one of the most prevalent is Sjogren’s syndrome, which impairs the normal production of body fluids like tears, saliva, and vaginal secretions
    Following the path our food takes to the stomach, we can look for effects in the esophagus too.  Eosinophilic esophagitis is a rarely encountered inflammation in the tissue of the esophagus which makes swallowing painful and difficult and can result in bleeding ulcerations.  When doctors do see it, they sometimes test for celiac disease, since there is a strong correlation.  Fortunately, in cases where this condition is caused by gluten intolerance, this painful chronic disorder clears up on a gluten free diet, too.
    Now we’re getting to the area most people associate with gluten intolerance – the gastro-intestinal system. In the past, celiac disease was usually described as causing gas, diarrhea, bloating, discomfort, cramping, and malabsorption.  But as you’ve already seen above, there is a whole lot more to this disorder, and we’re only halfway to the toes.
    In addition to the above symptoms, the body’s reaction to gluten can cause inflammation anywhere, but a common location is in the illeo-cecal junction and the cecum. This can sometimes be confused with appendicitis, or ovarian pain or an ovarian cyst in women experiencing right-sided lower abdominal discomfort.  Irritable bowel syndrome is suspected to affect at least 10-15% of adults (estimates vary). It is differentiated from IBD, or inflammatory bowel disorders (which include Crohn’s disease and ulcerative colitis). But, taken together, there are an awful lot of people out there with uncomfortable gut issues.  One fact to consider is that many of those with celiac disease were previously, and wrongly, misdiagnosed with IBS before discovering they actually had celiac disease.
    Let’s take a look at the urological system.  Even though gluten from the food we eat isn’t directly processed here, can it still be affected?  The answer is yes. Kidney problems in association with celiac disease are well documented, including oxalate kidney stones. Bladder problems are increasingly shown to be responsive to a gluten-free diet. This is kind of my specialty and I would estimate that about a quarter of those with interstitial cystitis, and many people with recurrent urinary tract infections, have a sensitivity to gluten. Even prostate inflammation in some men can be triggered by eating gluten grains.
    Sitting just atop the kidneys are our adrenal glands.  They have a difficult job, helping to direct our stress response system, our immune system, and our hormone output, and controlling inflammation in the body. Every time we experience a reaction to gluten, and our adrenals respond by sending out a surge of cortisol to help control inflammation, we are depleting our adrenal reserve.  When this happens chronically, over time, our adrenal system cannot keep up and becomes fatigued.  Symptoms of adrenal fatigue have far-reaching consequences throughout the body, including, of course, feeling fatigued and run down. But, adrenal fatigue can also affect our hormones, our blood sugar regulation, our mental acuity, our temperature regulation, and our ability to cope with food allergies, environmental allergies, and infections.
    Can the liver, the body’s largest internal organ, be affected by gluten intolerance too?  One example is autoimmune hepatitis, in which can be untreated celiac disease can be found in large numbers. Early screening testing for celiac disease is now strongly recommended for patients diagnosed with autoimmune hepatitis.
    The pancreas, which is key in blood sugar regulation, is highly affected by gluten intolerance.  Autoimmune disease triggers the development of Type I DM, and is becoming more closely associated with celiac disease.  Testing for celiac disease is now becoming a routine part of examination when a child develops Type I DM, and now that physicians are looking for celiac disease in juvenile diabetes, they’re finding it with greater frequency. Blood sugar regulation problems are also associated with non-diabetes hypoglycemia in those affected by gluten intolerance and appear to resolve with a low-glycemic gluten free diet.
    So, we’ve covered most of the body’s major internal systems. Now, let’s look at the extremities, our upper and lower limbs, where gluten-associated problems are also found. Ehlers-Danlos Syndrome, a collagen disorder resulting in shoulder, elbow, and wrist joints that dislocate easily (and other characteristics) is a genetic disorder that may also be associated with celiac disease.  I had mild symptoms of this disorder as a child, but never knew it had a name until I ran across it recently.  With a child who has this disorder, a simple game of swinging a child by the arms, or swinging a child between two sets of their parent’s arms, can result in a trip to the emergency to put their joints back into proper alignment. This is not to say that a reaction to gluten causes this genetic disorder, but that if you have a personal or family history of Ehlers-Danlos Syndrome, and symptoms that may be related to celiac disease, you should consider being tested.
    Rheumatoid arthritis is another of the autoimmune disorders associated with celiac disease, and often affects the fingers with crippling joint deformation. Other joints in the body can also be affected. Scleroderma is another terribly disfiguring and sometimes fatal autoimmune disorder affecting every part of the body. It is often first identified in the extremities, particularly the fingers. In scleroderma, normal tissue loses it’s flexibility as the body’s autoimmune response produces inflammation and an overproduction of collagen.  Collagen is the tough fibrous protein that helps form connective tissues including tendons, bones, and ligaments. Excess collagen is deposited in the skin and body organs, eventually causing loss of function.  Scleroderma can be associated with celiac disease.
    The arms and legs are also common spots for yet another autoimmune disorder, psoriasis, to develop.  Some patients with psoriasis are responsive to a gluten-free diet, but unfortunately, not everyone. Another skin condition that often shows up on the arms is dermatitis herpetiformis (DH), although this itchy blistering skin rash can occur in other places as well.  Common sites are the backs of the elbows and the backs of the knees, or on the lower legs.
    Peripheral neuropathy is a disorder that results in numbness, tingling, and sometimes severe nerve pain in the extremities.  Finger, hands, toes, feet, and lower legs may all be affected. Although usually associated with diabetes, peripheral neuropathy shows up fairly frequently in those with celiac disease, and is fortunately reversible on a gluten free diet supplemented by B-vitamins and some specific amino acids.  Peripheral neuropathy is usually associated with older people, but some of the cases I’ve observed recently have been in very young children who had severe malabsorption issues.  Fortunately they healed quickly and their neuropathy symptoms resolved completely.
    There a few last symptoms related to malabsorption that tend to show up in those with celiac disease or gluten intolerance.  Easy bruising and bleeding, either due to a deficiency of Vitamin K, or to an autoimmune platelet disorder, is one. Rickets, or osteomalacia – a softening of the bones in the legs related to vitamin D deficiency – is another. As we said before, inflammation goes along with celiac disease and gluten intolerance, and a common site for inflammation is the lower extremities.  Sometimes this can be profound, and trigger doctors to think heart disease, but it’s often unresponsive to Lasix and other diuretics. This condition, too, may also clear up on a gluten-free diet.
    As for me, I’ll be happy to be gluten-free, from head to toe.


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    Jefferson Adams
    Celiac.com 04/26/2018 - Emily Dickson is one of Canada’s top athletes. As a world-class competitor in the biathlon, the event that combines cross-country skiing with shooting marksmanship, Emily Dickson was familiar with a demanding routine of training and competition. After discovering she had celiac disease, Dickson is using her diagnosis and gluten-free diet a fuel to help her get her mojo back.
    Just a few years ago, Dickson dominated her peers nationally and won a gold medal at Canada Games for both pursuit and team relay. She also won silver in the sprint and bronze in the individual race. But just as she was set to reach her peak, Dickson found herself in an agonizing battle. She was suffering a mysterious loss of strength and endurance, which itself caused huge anxiety for Dickson. As a result of these physical and mental pressures, Dickson slipped from her perch as one of Canada's most promising young biathletes.
    Eventually, in September 2016, she was diagnosed with celiac disease. Before the diagnosis, Dickson said, she had “a lot of fatigue, I just felt tired in training all the time and I wasn't responding to my training and I wasn't recovering well and I had a few things going on, but nothing that pointed to celiac.”
    It took a little over a year for Dickson to eliminate gluten, and begin to heal her body. She still hasn’t fully recovered, which makes competing more of a challenge, but, she says improving steadily, and expects to be fully recovered in the next few months. Dickson’s diagnosis was prompted when her older sister Kate tested positive for celiac, which carries a hereditary component. "Once we figured out it was celiac and we looked at all the symptoms it all made sense,” said Dickson.
    Dickson’s own positive test proved to be both a revelation and a catalyst for her own goals as an athlete. Armed with there new diagnosis, a gluten-free diet, and a body that is steadily healing, Dickson is looking to reap the benefits of improved strength, recovery and endurance to ramp up her training and competition results.
    Keep your eyes open for the 20-year-old native of Burns Lake, British Columbia. Next season, she will be competing internationally, making a big jump to the senior ranks, and hopefully a regular next on the IBU Cup tour.
    Read more at princegeorgecitizen.com

    Jefferson Adams
    Celiac.com 04/25/2018 - A team of Yale University researchers discovered that bacteria in the small intestine can travel to other organs and trigger an autoimmune response. In this case, they looked at Enterococcus gallinarum, which can travel beyond the gut to the spleen, lymph nodes, and liver. The research could be helpful for treating type 1 diabetes, lupus, and celiac disease.
    In autoimmune diseases, such as type 1 diabetes, lupus, and celiac disease, the body’s immune system mistakenly attacks healthy cells and tissues. Autoimmune disease affects nearly 24 million people in the United States. 
    In their study, a team of Yale University researchers discovered that bacteria in the small intestine can travel to other organs and trigger an autoimmune response. In this case, they looked at Enterococcus gallinarum, which can travel beyond the gut to the spleen, lymph nodes, and liver. They found that E. gallinarum triggered an autoimmune response in the mice when it traveled beyond the gut.
    They also found that the response can be countered by using antibiotics or vaccines to suppress the autoimmune reaction and prevent the bacterium from growing. The researchers were able to duplicate this mechanism using cultured human liver cells, and they also found the bacteria E. gallinarum in the livers of people with autoimmune disease.
    The team found that administering an antibiotic or vaccine to target E. gallinarum suppressed the autoimmune reaction in the mice and prevented the bacterium from growing. "When we blocked the pathway leading to inflammation," says senior study author Martin Kriegel, "we could reverse the effect of this bug on autoimmunity."
    Team research team plans to further investigate the biological mechanisms that are associated with E. gallinarum, along with the potential implications for systemic lupus and autoimmune liver disease.
    This study indicates that gut bacteria may be the key to treating chronic autoimmune conditions such as systemic lupus and autoimmune liver disease. Numerous autoimmune conditions have been linked to gut bacteria.
    Read the full study in Science.

    Tammy Rhodes
    Celiac.com 04/24/2018 - Did you know in 2017 alone, the United States had OVER TENS OF THOUSANDS of people evacuate their homes due to natural disasters such as fires, floods, hurricanes, tornadoes and tsunamis? Most evacuation sites are not equipped to feed your family the safe gluten free foods that are required to stay healthy.  Are you prepared in case of an emergency? Do you have your Gluten Free Emergency Food Bag ready to grab and go?  
    I have already lived through two natural disasters. Neither of which I ever want to experience again, but they taught me a very valuable lesson, which is why I created a Gluten Free Emergency Food Bag (see link below). Here’s my story. If you’ve ever lived in or visited the Los Angeles area, you’re probably familiar with the Santa Ana winds and how bitter sweet they are. Sweet for cleaning the air and leaving the skies a brilliant crystal blue, and bitter for the power outages and potential brush fires that might ensue.  It was one of those bitter nights where the Santa Ana winds were howling, and we had subsequently lost our power. We had to drive over an hour just to find a restaurant so we could eat dinner. I remember vividly seeing the glow of a brush fire on the upper hillside of the San Gabriel Mountains, a good distance from our neighborhood. I really didn’t think much of it, given that it seemed so far from where we lived, and I was hungry! After we ate, we headed back home to a very dark house and called it a night. 
    That’s where the story takes a dangerous turn….about 3:15am. I awoke to the TV blaring loudly, along with the lights shining brightly. Our power was back on! I proceeded to walk throughout the house turning everything off at exactly the same time our neighbor, who was told to evacuate our street, saw me through our window, assuming I knew that our hillside was ablaze with flames. Flames that were shooting 50 feet into the air. I went back to bed and fell fast asleep. The fire department was assured we had left because our house was dark and quiet again. Two hours had passed.  I suddenly awoke to screams coming from a family member yelling, “fire, fire, fire”! Flames were shooting straight up into the sky, just blocks from our house. We lived on a private drive with only one way in and one way out.  The entrance to our street was full of smoke and the fire fighters were doing their best to save our neighbors homes. We literally had enough time to grab our dogs, pile into the car, and speed to safety. As we were coming down our street, fire trucks passed us with sirens blaring, and I wondered if I would ever see my house and our possessions ever again. Where do we go? Who do we turn to? Are shelters a safe option? 
    When our daughter was almost three years old, we left the West Coast and relocated to Northern Illinois. A place where severe weather is a common occurrence. Since the age of two, I noticed that my daughter appeared gaunt, had an incredibly distended belly, along with gas, stomach pain, low weight, slow growth, unusual looking stool, and a dislike for pizza, hotdog buns, crackers, Toast, etc. The phone call from our doctor overwhelmed me.  She was diagnosed with Celiac Disease. I broke down into tears sobbing. What am I going to feed my child? Gluten is everywhere.
    After being scoped at Children's Hospital of Chicago, and my daughters Celiac Disease officially confirmed, I worried about her getting all the nutrients her under nourished body so desperately needed. I already knew she had a peanut allergy from blood tests, but just assumed she would be safe with other nuts. I was so horribly wrong. After feeding her a small bite of a pistachio, which she immediately spit out, nuts would become her enemy. Her anaphylactic reaction came within minutes of taking a bite of that pistachio. She was complaining of horrible stomach cramps when the vomiting set in. She then went limp and starting welting. We called 911.
    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    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.