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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
  • 1 1

    CELIAC DISEASE HEAD TO TOE


    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…


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    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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    Guest Gloria Brown

    Posted

    Great overview of common responses to Celiac Disease! The hallmark of celiac disease is often seen in the inability of disease to respond from standard treatment and, for the astute Celiac, indicative gluten is still in their food and environs.

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    This is one of the best I've seen! It explains so much and helped me understand more. Thank you. I've forwarded this page to family and friends that I know will benefit from this information!

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    I thought you wrote this about me. There are so many symptoms you touched on that no one has been able to explain to me. I know now many of these symptoms are not a coincidence, but a fact that they do exist in a person of Celiac Disease. I thank you for all the information and education for our community.

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    I was diagnosed with Celiac Disease 2/13/09. After researching the disease, I am wondering how long I have been misdiagnosed! I have had a good number of symptoms for the last 30 yrs. My sister found out 5 yrs ago, that she had Celiac Disease, and she told me for at least 4 of those years to go in and be tested. She knew from the research that she had done, and knowing me so well, that I had it. She just had the leaky gut syndrome, but I have had at least a dozen symptoms, for 30 yrs! I feel better, but still have a long way to go. Gluten free is the only way I can keep my terrible headaches away. but I have yet to build up my strength and am always tired yet, but I'm sure it will take some time. I also haven't had one canker sore in my mouth since quitting gluten. My bones and joints still ache and get numb and tingle yet, but time will tell.

    I'm glad I know what has been wrong with me and doing whatever I can to feel better. It's taken its toll on me. My teeth are bad and are always rotting or breaking off. But thank you for all the information you can give me. Cindy

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    Guest Joan White

    Posted

    It is gratifying to continue learning how this disease affects our bodies. Staying informed may help identify problems early for better treatment and outcomes.

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    Guest Sheila A Stewart RN

    Posted

    As one nurse to another, Thank You so much! I too am glad to be gluten free! My son and one out of three granddaughters are also celiac. A very informative article.

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    Guest Kimberly

    Posted

    Thank you so much for this information. My son has been having symptoms of some kind of food intolerance since 4th grade. First we thought it was fatty food, most recently we switched him off milk. Now at 13 he still has occasional stomach cramping, gas and headaches like you listed above. I am very eager to find find the solution. Thanks again.

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    I have just been diagnosed with celiac and have read this article with amazement. For approximately 15 years I have suffered with some of the above and was just told I have IBS. I now have so much more of an understanding of this incredible disease which seems at the moment, to have turned my world up-side-down. Thank you.

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    Guest Confused in Iowa

    Posted

    I have had numerous health issues that are all signs of this illness and had finally narrowed it down to gluten. I had eliminated it from my diet for 2 weeks and had noticeable improvements in my back/side pain and my sinuses. So I asked my doctor for a blood test. It came back negative. His response was to try gluten again and see for sure and I had one piece of cake which triggered cramping, diarrhea, and the rash on my arms itched like crazy. Back pain returned. So I went to another doctor who did an endoscopy. In the recovery room he said it looked as though I had celiac (Yea finally a reason for the pain) Last week I got his results from the 10 biopsies and they all said negative.

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    Guest Tasia

    Posted

    Great article - thank you.

    Can you please comment on 'people of color' who have celiac disease. I am a women of color and I have found it very frustrating when doctors tell me that I can't have celiac disease because I am of African descent. I have now received a diagnosis through a biopsy, and I absolutely have celiac disease. But it is still a challenge explaining to doctors that I have a positive diagnosis of the disease.

     

    For years I was misdiagnosed for celiac disease because I didn't fit the typical profile. I am not fair skinned, with light eyes and light hair, and slim.

     

    I appreciate your response on this subject.

     

    Many thanks,

    Tasia

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    Guest Painful Chris

    Posted

    I have had numerous health issues that are all signs of this illness and had finally narrowed it down to gluten. I had eliminated it from my diet for 2 weeks and had noticeable improvements in my back/side pain and my sinuses. So I asked my doctor for a blood test. It came back negative. His response was to try gluten again and see for sure and I had one piece of cake which triggered cramping, diarrhea, and the rash on my arms itched like crazy. Back pain returned. So I went to another doctor who did an endoscopy. In the recovery room he said it looked as though I had celiac (Yea finally a reason for the pain) Last week I got his results from the 10 biopsies and they all said negative.

    I had terrible abdominal pains, very noisy digestion, wind and diarrhea. After many weeks I went to see a specialist, a thorough examination of stomach through the digestive tract to large intestine, including numerous blood tests revealed that I did not have Celiac disease. However, I kept an accurate food diary for five months. I made the decision to live the lifestyle of a Celiac, after around three weeks all unpleasant symptoms slowly disappeared. I felt superb and thought the problem would never reoccur. While on holiday I started eating bread and pasta, after two weeks all the symptoms returned. I am now suffering for my stupidity and swear that I will never eat wheat, cereal or any gluten product ever again.

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    Very informative, thank you.

     

    I've been diagnosed for a few years and am on a gluten free diet. I live in the UK. In the cold months most of my body aches (my shoulders, back, legs and arms). Just wondering if you have any idea what is causing this?

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    Thank you very much for all this information especially the parts relating to Adrenal Fatigue and the blood sugar regulation (pancreas etc.). While I value and appreciate that most of this information comes from your experience I would like to see it supported with footnotes as to your sources so I can dig deeper. Thanks.

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    Regarding the connection between celiac disease and other inflammatory diseases such as Arthritis, is it only Rheumatoid Arthitis or have you seen Osteo Arthitis in Celiacs as well?

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    Guest Alexis

    Posted

    Great article - thank you.

    Can you please comment on 'people of color' who have celiac disease. I am a women of color and I have found it very frustrating when doctors tell me that I can't have celiac disease because I am of African descent. I have now received a diagnosis through a biopsy, and I absolutely have celiac disease. But it is still a challenge explaining to doctors that I have a positive diagnosis of the disease.

     

    For years I was misdiagnosed for celiac disease because I didn't fit the typical profile. I am not fair skinned, with light eyes and light hair, and slim.

     

    I appreciate your response on this subject.

     

    Many thanks,

    Tasia

    I am also African American and being tested for celiac

    and for DH as well. Can you tell me some of your symptoms??

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    Guest Barbara

    Posted

    Great article - thank you.

    Can you please comment on 'people of color' who have celiac disease. I am a women of color and I have found it very frustrating when doctors tell me that I can't have celiac disease because I am of African descent. I have now received a diagnosis through a biopsy, and I absolutely have celiac disease. But it is still a challenge explaining to doctors that I have a positive diagnosis of the disease.

     

    For years I was misdiagnosed for celiac disease because I didn't fit the typical profile. I am not fair skinned, with light eyes and light hair, and slim.

     

    I appreciate your response on this subject.

     

    Many thanks,

    Tasia

    Dear Tasia, I too am diagnosed with celiac and DH. It is true that many doctors are uneducated about celiac in people of color. But, there is hope. Keep blazing the trail by informing doctors of your illness in order that they will either do the necessary research or cause you to choose other doctors who are willing to do the research. I understand and am learning through my local support group that part of my journey is to inform and challenge my caretakers to take care of me.

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    Guest Barbara

    Posted

    I am also African American and being tested for celiac

    and for DH as well. Can you tell me some of your symptoms??

    The symptoms are pretty classic. I would suggest you check out the symptoms and compare them to yours. Mine included both DH, migraines, joint issues, tingling and numbing sensations and all of the typical stomach and bowel issues including lactose problems. It took over two years of misdiagnoses before I was diagnosed. I have been on a gluten free diet for 1.5 years and I feel great! I don;t wish it on anyone, but Celiacs was an answer to prayer for me!

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    Guest Barbara

    Posted

    Wow! It took more than ten years for me to get diagnosed and I too am happy to be gluten free. I had many of the symptoms you listed, At 46, I'd suffered with migraines since 13, joint problems since high school and in 1996 I developed neuro symptoms and DH, but it took ten years of seeing many, many, many doctors, including psychologists before I was diagnosed, I cried for the first six months because I thought I was crazy when every test I took came back negative. Thanks you for sharing this...you are saving someone's life! Celiacs diseae was my answer to prayer and I feel SO much better NOW...no more headaches!!!

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    I have had numerous health issues that are all signs of this illness and had finally narrowed it down to gluten. I had eliminated it from my diet for 2 weeks and had noticeable improvements in my back/side pain and my sinuses. So I asked my doctor for a blood test. It came back negative. His response was to try gluten again and see for sure and I had one piece of cake which triggered cramping, diarrhea, and the rash on my arms itched like crazy. Back pain returned. So I went to another doctor who did an endoscopy. In the recovery room he said it looked as though I had celiac (Yea finally a reason for the pain) Last week I got his results from the 10 biopsies and they all said negative.

    If you're reacting to the gluten, you're intolerant. Check out Enterolabs, they do stool testing (you'll have to go back on gluten for it) or gene testing. Stool testing is more accurate than blood tests, as the antibodies are almost always present in the digestive tract (where the initial reaction takes place) and not always in the blood (must have leaky gut for it to get into the blood). It was beneficial for me to get the gene testing, as I now know that I have 2 gluten intolerant genes (severe symptoms, many of them), and that every single one of my children will get at least one gene from me. You are probably gluten intolerant vs. celiac, and that's why the endoscopy was normal (though some w/ 2 GI genes can get celiac sprue). I wish you luck, remember average diagnosis is 7-10 years after onset of symptoms.

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    Thank you for posting about this. My daughter has been dealing with stomach issues since she was 9 and she is now 16. The best the local med. establishment could say was childhood IBS and it never felt like it fit. I will look further into it. Your head to toes descriptions help to realize how far reaching this thing is. I wish there was more info out there on gluten intolerance. I also desire to see footnotes so I could follow along and read some of the source material. But other than that keep writing, people need to hear what you have to say. Good luck and God bless.

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    admin

    This article appeared in the Spring 2007 edition of Celiac.coms Scott-Free Newsletter.
    Celiac.com 08/29/2007 - The XII International Celiac Disease Symposium, proudly hosted by the Celiac Disease Center at Columbia University, featured presentations from researchers from all over the globe. The last session of the scientific portion of the symposium, entitled “Non-Dietary Therapies”, was full of controversy and fireworks. Talks given by Drs. Khosla, Gray, Paterson, Anderson and Mitea all revealed that potential alternatives to the gluten free diet are now being aggressively pursued. Several groups have even spun off from pharmaceutical companies to raise funds to test these alternatives in patient trials. However, several questions remain. How close are we to a “pill” or “vaccine” to treat or prevent celiac disease? And do we even need, or more importantly, WANT them, given that the diet is safe and effective?
    Any alternative therapy for celiac disease must be at least as safe as the gluten-free diet, which, if done correctly, has NO side-effects. So the bar is raised very high. An alternative must offer great medical benefit to celiac patients without causing any medical harm. It is also unclear how, exactly, these new therapies will be implemented. Can they treat existing celiac disease? Will they prevent those at increased risk for the disease (such as siblings) from having symptoms? Will these medications allow celiac patients to ingest as much gluten as they want, or will they just take away the fear of contamination when eating questionable foods? What follows is a summary of several important points raised by some of these speakers in regard to the research that their center is doing in this area of “alternative therapies for celiac disease.
    Two groups discussed their research on what has commonly become known as “the celiac pill”. The idea behind the “pill” is somewhat similar to the idea of taking a lactase enzyme supplement to digest the milk sugar lactose (if you are lactose intolerant). However, digesting the proteins that trigger the immune reaction in celiac disease is much more complex than digesting the simple sugar found in dairy products. The small fragments of the gluten proteins from wheat, rye and barley, which stimulate the immune system in someone with celiac disease, contain a large quantity of an amino acid called proline. The stomach and pancreatic enzymes in humans have difficulty digesting the fractions where these prolines are located, making the gluten highly resistant to complete digestion. The idea behind the “celiac pill” is to provide enzymes to break down the gluten into smaller fragments which will not be recognized by a celiac patient’s immune system. Therefore, theoretically, gluten would not cause an immune reaction and could be safely eaten.
    Dr. Gary Gray, an adult gastroenterologist working at Stanford University in California, addressed this issue in his presentation “Oral Enzyme Therapy”. Their study looked at 20 biopsy-proven celiacs in remission (without symptoms) who received orange juice with either gluten or gluten pre-treated with a special enzyme (abbreviated PEP, for prolyl endopeptidase). Each patient consumed a low dose of gluten daily, 5 grams, which is equivalent to one slice of bread. The patients completed a daily symptom questionnaire, and had urine and stool tests of to measure intestinal damage. The researchers concluded that pretreatment of gluten with PEP avoided the development of fat or carbohydrate malabsorption in the majority of those patients who, after a 2-week gluten challenge, developed fat or carbohydrate malabsorption. The PEP enzyme needs to be investigated further in larger trials of celiac patients.
    Cristina Mitea, working with Dr. Fritz Koning at Leiden University in The Netherlands, also presented some data using similar technology, entitled “Enzymatic degradation of gluten in a GI-tract model”. This group published in 2006 that the above described PEP enzyme may not work optimally in the celiac patient, since it is not active at low stomach pH. The PEP enzyme may also be broken down by pepsin, a digestive enzyme in the stomach, before it reaches the small bowel where gluten causes the most damage. Given these facts, this group of researchers characterized a prolyl endoprotease enzyme, derived from the fungus Aspergillus niger, abbreviated AN-PEP. The AN-PEP enzyme, according to some publications, has been shown to work at stomach pH while resisting pepsin digestion. In the lab, the AN-PEP was able to degrade intact gluten as well as small fragments of gluten, including those that stimulate the immune system in patients with celiac disease. It also appeared to act within minutes, which is 60 times faster than PEP. This is particularly important, as ingested gluten will leave the stomach to enter the small bowel within 1 to 4 hours after being eaten. These researchers state that this enzyme is very stable, and could be produced at low cost at food-grade quality in an industrial setting. However, it has not yet been tested in human clinical studies.
    In summary, some of these future potential treatments include:
    The development of genetically detoxified grains Oral or intranasal celiac vaccines to induce tolerance Inhibitors to the effects of zonulin on intestinal permeability Detoxification of immunogenic gliadin peptides (or gluten proteolysis) via oral peptidase supplementation Inhibitors of tissue transglutaminase Dr. Michelle Pietzak, “The Gluten Free MD” is an Assistant Professor of Clinical Pediatrics at the University of Southern California Keck School of Medicine. She sees patients at Childrens Hospital Los Angeles and Los Angeles County Women’s and Children’s Hospital. With New Era Productions, she has recently released an audio celiac disease set as well as a 2 disc DVD set about celiac disease and the gluten free diet, available at www.glutenfreemd.com.

    Dr. Rodney Ford M.D.
    Celiac.com 10/22/2008 - This article appeared in the Autumn 2007 edition of Celiac.com's Scott-Free Newsletter.
    The Gluten Syndrome refers to the cluster ofsymptoms that you experience if you react to gluten.  Gluten can affectyour gut, your skin, and your brain.  It applies to any reaction thatis caused by gluten.  It includes celiac disease, along with the myriadsymptoms that can be experienced throughout your gastro-intestinaltract in response to gluten.  It also includes many other symptoms thatdo not stem from your gut.  These include brain and behavior disorders,irritability and tiredness, skin problems, muscular aches and pains andjoint problems.
    The effects of gluten are wide ranging and arenow brought together under the term Gluten Syndrome.  In mostinstances, a simple blood test (the IgG-gliadin antibody test) canidentify those people who are affected.  
    10% Affected by Gluten
    TheGluten Syndrome affects about one in ten people.  However, most peoplewho are affected are unaware that their life is being hindered bygluten.  The gluten symptoms are most likely to be caused by damage tothe nerves and brain.  The earlier the problem is identified, thebetter the response to a gluten-free diet will be.
    Tummy Pains and not Growing
    Jontiis 3 years old.  His gluten story is typical.  His mother brought himto see me because she was concerned about his poor growth, and hisdistressing abdominal pains.  His blood tests showed a high gluten test(His IgG gliadin was 94 units.  This test result is usually less than15 at this age).  Other tests, including the gene test for celiacs,showed that he did not have celiac disease.
    I suggested that hego on a gluten-free diet.  Within days he began to eat better, and histummy pains went.  He is now growing again on a gluten-free diet.  Hismum wrote:
    “I really haven’t found the gluten-free diet thatdifficult.  I found people to be incredibly helpful actually, both inthe supermarket and in restaurants.  In the supermarket there is a lotof normal type food that is gluten-free and it is all clearly labeledthat it is gluten-free.  Even if you go to the delicatessen departmentthey will tell you which luncheon sausage is gluten-free.  There aregluten-free sausages all labeled and it’s normal food that tastes great.
    Forthe baking mixes and bread mixes, you don’t even have to go to thespecialist health food shops.  I go to no other shops other than thesupermarket to get food for him and I haven’t really found it thatdifficult.”
    Amazed how Jonti has Adapted
    Ihave been amazed, actually, by how easily Jonti has adapted to thegluten-free diet.  I tell him it is special food for him and that itwon’t hurt his tummy.  We have got nice biscuits from a bakery and heis allowed to choose which one he wants for morning tea.  He still hasnormal foods like chips and sweets.  He is not missing out and theother biscuits he hasn’t even really asked for.  The only thing is thebread!  I have yet to perfect the making of the bread.  Toast is aboutthe only thing he asked for.  You can get specialist cornflakes andcereals, porridge he loves, again, at the supermarket.  It has beensurprisingly easy actually
    I’m so pleased that he is now well again.  Gluten-free has made such a huge difference.”
    The Main Points:

    The Gluten Syndrome refers to the cluster of symptoms that youexperience if you react to gluten.  It can affect your gut, skin andnerves. Medical practitioners accept that gluten causes celiac disease(gut damage) but often resist the notion that gluten can cause a widerspectrum of illness. Celiac disease, gluten intolerance and gluten sensitivity are all part of The Gluten Syndrome. Rapidly accumulating medical evidence shows that gluten is nowcreating a massive health problem throughout the Western world. However, woefully few people are aware of the catalogue of harm thatgluten is causing.  About one in ten people—that is millions ofpeople—are affected by The Gluten Syndrome. Gluten could be responsible for one-third of all cases of chronicillness and fatigue.  People suffering from these conditions arecurrently just tolerating their symptoms, unaware that gluten is theculprit.  This is because the link to gluten is not yet recognized bythe medical community. Gluten-containing products are being added to our food chain inincreasing amounts.  Our wheat is being engineered to have even highergluten content.  This gluten overload is occurring without ourcommunities being unaware of the harm that this is causing. Gluten can cause malfunctions of the brain and neural networks ofsusceptible people.  The incidence of mental, neurological and braindisorders is on the rise.  However, the diagnosis of gluten-sensitivityis seldom made. The community is already embracing the notion ofgluten-sensitivity.  More and more people are opting for a gluten-freelifestyle.  These people are looking for a term to identify theirillness.  Their search is over.  They have been affected by The GlutenSyndrome. A strong gluten-free movement is developing globally in responseto the knowledge that going gluten-free can be so beneficial to so manypeople.  What has been missing up until now is a name that captures thegluten problem.  The missing name is The Gluten Syndrome.

    Get Your Blood TestsThe Gluten Tests
    Glutenis a protein that is found in wheat grains.  This protein has a numberof components, one of which is called gliadin.  People who get sickfrom gluten are usually reacting to the gliadin component.  
    You are a Long Tube
    Tounderstand what the blood tests mean, first you need to know a littlemore about your immune system.  It is the job of your immune system toprotect you from the outside world.  It protects you from the invasionof microbes (viruses and bacteria), and it also protects you from thetoxins and poisons in the food that passes through your gut.  Your gutis a long tube inside you that travels from your mouth to your anus. This is your gastrointestinal tract, also called your bowel.  Eventhough it is inside your body, the contents of this tube are still onthe ‘outside’ from your body’s point of view.  Lots of your immunecells coat the skin (called the mucosa) of this tube and work hard toprotect you from anything that might prove to be harmful.
    Gluten (Gliadin) can be Toxic
    Gliadin,the toxic component of the gluten protein, is one such harmfulsubstance.  Your immune system defends your body strongly againstgliadin using weapons called antibodies and the gliadin is repelled. The outcome of your immune system’s fight against gliadin is theproduction of antibodies that are specifically targeted towardsgliadin: these are called anti-gliadin antibodies.
    Gliadin Antibodies
    Anti-gliadinAntibodies (commonly called the IgG-gliadin antibody) are weapons thathave been made specifically to fight against gluten in the diet. Remember, gliadin is a component of the gluten protein.  This antibodyis very sensitive.  It is made very specifically by your immune systemto fight against gliadin.  However, a high level of this antibody doesnot necessarily mean that you have any gut damage, so it is not veryaccurate in assisting the identification of patients with celiac gutdamage.  On the other hand, tests for this antibody are nearly alwaysstrongly positive in people with celiac disease who are not on agluten-free diet.  Once people are placed on a strict diet, theseantibodies will fall to normal levels within a period ranging from fewmonths to a year or two.
    Gluten Tests Not Getting Done
    Thereis a problem.  Unfortunately, this gluten blood test (the IgG-gliadinantibody test) is no longer available from most communitylaboratories.  This year many laboratories have decided to discontinuethis test.  Their opinion is that it is worthless (for detecting celiacdisease).
    I disagree with their decision.  My latest data shows thathuge numbers of people remain undiagnosed with serious symptoms becauseof the misinterpretation of this gluten test result.  At the moment itis difficult to get the medical labs to do your gluten test.  They areunwilling to consider that gluten causes a wide spectrum of illnessthat has been written up in the international medical literature.  Theyhave turned a blind eye to the problem.  If you can’t test for glutenreactions, then you will not be able to make the diagnosis!
    A Diagnosis at Last!
    Mandywrote this letter to me: “Hi Dr Rodney Ford, for many, many, years Ihave been to doctors complaining of a bloated tummy, extreme crampingpains, and diarrhea (to the point I had no time to get to the toilet). I have recently had some blood test for celiacs done by my GP.  Myresults showed: the tTG was negative; and the IgG-Gliadin resultstrongly positive.  He could not explain it to me, but he said that Idid not have celiac disease.”
    “I have no idea what these testsmean.  Although I got no answers, I had to try something.  I was at theend of my nerves!  My bad health has always been upsetting my socialand working life.  I often have to rush home to the toilet.”
    Amazing on a Gluten-free Diet
    “SoI decided to try a gluten-free diet!  I have now been gluten-free for amonth.  It is amazing! Already I feel like a different person!  No morebloating, just the odd stomach cramp.  Also, all my headaches havegone.  But I still feel really tired and not sure how to overcomethis.  Can you help me please by explaining my blood test results—andshould I have anymore tests?  What else I can do to help myself?   Ihope you can help me Dr Ford.  Gluten, up to now, seems to have made mylife a misery.  Even though I feel so much better already, I want toget even better.  Kind regards, Mandy.”
    The Gluten Syndrome
    Ireplied: “Thanks.  I am glad that you are feeling a lot better offgluten.  From your story and your blood test results, you havegluten-sensitivity.  You do not have celiac disease (your low tTG levelshows that you do not have any gut damage from gluten).  But you arestill getting sick from gluten (your high IgG-gliadin level shows thatyour body reacts to gluten).  The good news is that it takes manymonths to get the full benefits of a gluten-free diet.  I expect thatyou will continue to feel better over the next few months.  You shouldbe taking some additional iron and a multivitamin supplements becauseyou will be relatively iron deficient—that will be making you tired.”
    The Time has Come
    Thehistory of science and medicine is littered with vehement argumentsagainst any new idea that runs contrary to traditional beliefs. Ironically however, it takes new ideas to make progress.  It was GeorgeBernard Shaw who said that “The reasonable man adapts himself to theworld: the unreasonable one persists in trying to adapt the world tohimself.  Therefore, all progress depends on the unreasonable man.”
    Thousands Convinced
    Manypeople are joining the ranks of the gluten-free.  There are thousandsof people like you who have read this information and who are concernedabout how gluten might be affecting them; there a millions of peoplewho are sick and tired of being ignored and who are looking for moreenergy and vitality; there are the practitioners in the field ofcomplementary medicine who are aware of the concept ofgluten-sensitivity; there are the laboratories who have developed thegliadin antibody test and know that their tests are specific for glutenreactions; there are the gluten-free food manufacturers who haverecognised that there is an ever-increasing demand for gluten-freeproducts; there are the networks of people in the health food industrywho appreciate the value of high-quality food and a gluten-free diet;and there are the supermarkets and grocery stores that are sensitive tothe demands of their customers.
    Who Might Oppose this Trend?
    Aspreviously discussed, medical practitioners are wary of overturningtradition.  They do not want to be seen as alternative and want toavoid acting outside of the recommended clinical guidelines.  Inaddition, there are the grain-growers and the bread-makers who maketheir living from gluten, and the pharmaceutical companies who maketheir living from the sick and unwell.  
    Bad Behavior on Gluten
    Kimberleyis 12 years old.  She has The Gluten Syndrome and her behavior getsdisturbed with gluten.  She does not have celiac disease but she doeshave a high gluten test.  (Her IgG-gliadin level was 55 units—It shouldbe less than 20.)
    Her mum said: “It is interesting about howbehavior troubles are linked to gluten!  Our youngest, Kimberley, isnow 12 years old.  She had her IgG-gliadin measured and it was high. She was clearly a lot better when she was off gluten.  However then shedecided to ‘try’ gluten again.  Rodney suggested a small amount but shewent for it—big time!”
    By the end of a week, two other parentshad asked what was wrong with her.  Another parent asked “what onearth’s the matter with her” she seemed so different and stroppy.  Sheadmitted she felt “absolutely awful” but really didn’t want to admit itas she knew it meant she’d have to completely give up gluten.”
    Anyway,after a lot of talking, she agreed it wasn’t in her best interests toeat gluten.  From that day she has been gluten-free ever since, withthe odd very long envious glance at French bread!  With our supportshe’s very compliant with being gluten-free now, which I think is remarkable forher age.  Clearly she now understands and gets the benefits of gluten-free.  ButI was really shocked at how affected her behavior was after areintroduction of gluten.”
    Could You Have The Gluten Syndrome?
    Onein every ten people is affected by gluten.  If you have chronic symptom(feeling sick, tired and grumpy) then you should get checked for TheGluten Syndrome. 


    Rivkah Roth D.O., D.N.M.
    Celiac.com 08/28/2012 - What's In A Name and When Does Celiac Predisposition Become A Disease?
    No doubt that global awareness about celiac disease and its possible involvement in a myriad of other (mostly autoimmune response related) conditions is growing. Growing, unfortunately, is confusion about terminologies and medical implications.


    The “Common” Understanding
    "Celiac disease" has become a generic blanket term not unlike how "Kleenex" today signifies no more than a box of tissue paper of any brand. So, in the public mind, "celiac disease" today stands for everything connected to a reaction to gluten.[1]
    Such an approach is highly imprecise and misses
    the need for distinction between non-celiac and/or celiac gluten sensitivity and the fact that a predisposition does not necessarily constitute disease.

    The 2012 Internationally Accepted Definition
    In an attempt to bring some clarity to the medical community, the world’s leading celiac minds earlier in 2012 met for an international convention in Oslo, Norway.[2]  During that convention, and after considering many of the most commonly used terms, they recognized

    …the presence of genetic, predisposing patterns…
    and called for a

    …distinction between "celiac disease" versus "gluten-related disorders"… [3]
    Let us be clear: This terminology refers solely to the underlying toxic effect of gluten rather than the possibly resulting disorders that may be based on other, additional triggers as well.


    Genotyping Tells Non-Celiac from Celiac Gluten Sensitivity
    Along with ever mounting genotype-related research, detailed HLA-DQ2/DQ8 human leukocyte antigen genotyping[4] today allows us to distinguish between predispositions to non-celiac and/or celiac gluten sensitivity (NCCGS) predisposition.
    Increasingly, research results link gluten issues to a considerable list of specific conditions and, therefore, allow for and promote a “natural” approach (i.e. gluten free diet and lifestyle) to resolve a complex panel of non-obvious signs and symptoms.
    Accordingly, "Celiac" is not (yet) a disease but a metabolic predisposition, i.e. the body’s inability to digest certain grain proteins, prolamines, etc.—much like a gasoline fueled car will sputter and eventually corrode on diesel fuel.


    Predisposition vs. Disease
    A genetic predisposition to celiac only becomes a disease (e.g. celiac disease or one of the non-celiac gluten sensitivity enabled conditions)[5] if the body’s inability to digest gluten and certain other grain proteins is ignored at the expense of the immune system.[6]
    In other words, an individual genetic predisposition to celiac only develops into full blown disease if that particular individual does not adhere to a gluten-free diet and lifestyle.
    An European Union et al commissioned research paper concluded:

    The environment clearly plays a crucial role in the development of celiac disease: No gluten, no disease!….
    …Because gluten is present in relatively large amounts in a variety of common food products, the daily gluten intake in a Western diet is high. In combination, we see that every HLA-DQ2– and/or -DQ8–positive individual is exposed to a large repertoire of immunogenic and abundant gluten peptides, and this may be an important factor determining disease development. There is, at present, no evidence linking additional environmental factors to celiac disease. [7]


    Big Business: Catering to a Gluten Free Diet
    The facts are everywhere and are illustrated further by these research abstract numbers posted on PubMed:
    18,565 on “celiac disease” (607 alone in 2012 – Jan. to Jly.) 9,689 on “gluten” (385 in 2012 – Jan. to Jly.) 3,447 on “glutenfree” (192 in 2012 – Jan. to Jly.) In addition, 38,878 abstracts deal with wheat research, whereof 1,862 in 2011, and 1,384 in 2012 to date (Jan. to Jly.).
    Clearly: $6.1bn spent 2011 on gluten-free foods in the USA—and a 30% growth from 2006 to 2010 in Canada to $2.64bn—indicate “Big Business” complete with the risk of missed, omitted, and mis-information for the goal of promoting greater consumption of gluten-free processed foods.
     
    The Challenge
    Our present naming confusion, therefore, may end up fuelling potential manipulation and mismanagement of the patient and consumer from the part of medical, pharmaceutical, supplement, and food industries.
    Even the above mentioned latest attempt at coordinating nomenclature and distinction between non-celiac and/or celiac gluten sensitivity brings with it several major flaws and challenges:
    It may take years for new naming conventions to become accepted throughout the international medical and dietary community. Recognizing a term such as "gluten-related disorders" or “non-celiac gluten sensitivity” calls for a total revamping of our medical and diagnostic systems in order for the large number (so far about 160) of autoimmune and other disorders to be recognized as gluten-related.   In addition, future questions will arise as research identifies and confirms more genetic links:
    Already, clinic practice shows that some of the "celiac" patients, previously diagnosed by positive intestinal biopsy[8] and serological findings now, on genotyping[9], turn out to carry "non-celiac" and not “celiac” gluten sensitivity alleles. Where does this leave such individuals on the traditionally used "celiac disease" versus "gluten-related disorder" specter?
    Clearly, despite good intention for a more precise naming distinction, it appears that additional work is needed in order to entrench new medical terminology and disease pictures.
     
    Conclusion
    Until then, whenever one of my patients receives a positive HLA gene test, I will adhere for clarity’s sake to the terms of “non-celiac” and/or “celiac gluten sensitivity” (NCCGS).
    This terminology refers solely to the underlying toxic effect of gluten and prevents a wrong implication of predisposition=disease diagnosis. Instead, “non-celiac and/or celiac gluten sensitivity” will simply point to the inherited underlying predisposition to specific additional triggers and complications if exposed to gluten.
    Most importantly, I will make sure to instill in my patients that disease is not the inevitable outcome of their genetic predisposition, and that a 100% gluten-free diet and lifestyle allows for avoidance, control, and perhaps even reversal of a complex web of interrelated autoimmune-based conditions and disorders, both for non-celiac and for celiac gluten sensitivity related disorders.

    [1] http://www.ncbi.nlm.nih.gov/pubmed/22351716  Ann Intern Med. 2012 Feb 21;156(4):309-11. Nonceliac gluten sensitivity: sense or sensibility?
    [2] http://www.ncbi.nlm.nih.gov/pubmed/22345659  Gut. 2012 Feb 16. [Epub ahead of print] The Oslo definitions for coeliac disease and related terms.
    [3] http://www.ncbi.nlm.nih.gov/pubmed/19940509  Int Arch Allergy Immunol. 2010;152(1):75-80. Epub 2009 Nov 24. Differential mucosal IL-17 expression in two gliadin-induced disorders: gluten sensitivity and the autoimmune enteropathy celiac disease.
    [4] http://www.ncbi.nlm.nih.gov/pubmed/22123644  Curr Opin Gastroenterol. 2012 Mar;28(2):104-12.  Advances in coeliac disease.
    [5] See future articles posted in these pages...  
    [6] http://www.ncbi.nlm.nih.gov/pubmed/21787225  Int Rev Immunol. 2011 Aug;30(4):197-206.  Important lessons derived from animal models of celiac disease.
    [7] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC209453/?tool=pmcentrez  J Clin Invest. 2001 November 1; 108(9): 1261–1266. doi:  10.1172/JCI14344  PMCID: PMC209453  Interplay between genetics and the environment in the development of celiac disease: perspectives for a healthy life.
    [8] http://www.ncbi.nlm.nih.gov/pubmed/22742547  Arch Pathol Lab Med. 2012 Jul;136(7):735-45.  An update on celiac disease histopathology and the road ahead.
    [9] http://www.ncbi.nlm.nih.gov/pubmed/21593645  J Pediatr Gastroenterol Nutr. 2011 Jun;52(6):729-33.  HLA-DQ genotyping combined with serological markers for the diagnosis of celiac disease: is intestinal biopsy still mandatory?

  • Recent Articles

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

    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.
    If you’ve flown anywhere lately, you may have seen them. People flying with their designated “emotional support” animals. We’re not talking genuine service animals, like seeing eye dogs, or hearing ear dogs, or even the Belgian Malinois that alerts its owner when there is gluten in food that may trigger her celiac disease.
    Now, to be honest, some of those animals in question do perform a genuine service for those who need emotional support dogs, like veterans with PTSD.
    However, many of these animals are not service animals at all. Many of these animals perform no actual service to their owners, and are nothing more than thinly disguised pets. Many lack proper training, and some have caused serious problems for the airlines and for other passengers.
    Now the major airlines are taking note and introducing stringent requirements for service animals.
    Delta was the first to strike. As reported by the New York Times on January 19: “Effective March 1, Delta, the second largest US airline by passenger traffic, said it will require passengers seeking to fly with pets to present additional documents outlining the passenger’s need for the animal and proof of its training and vaccinations, 48 hours prior to the flight.… This comes in response to what the carrier said was a 150 percent increase in service and support animals — pets, often dogs, that accompany people with disabilities — carried onboard since 2015.… Delta said that it flies some 700 service animals a day. Among them, customers have attempted to fly with comfort turkeys, gliding possums, snakes, spiders, and other unusual pets.”
    Fresh from an unsavory incident with an “emotional support” peacock incident, United Airlines has followed Delta’s lead and set stricter rules for emotional support animals. United’s rules also took effect March 1, 2018.
    So, 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 and emotional support animals.
    Source:
    cnbc.com

    admin
    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

    Jefferson Adams
    Celiac.com 04/17/2018 - Could the holy grail of gluten-free food lie in special strains of wheat that lack “bad glutens” that trigger the celiac disease, but include the “good glutens” that make bread and other products chewy, spongey and delicious? Such products would include all of the good things about wheat, but none of the bad things that might trigger celiac disease.
    A team of researchers in Spain is creating strains of wheat that lack the “bad glutens” that trigger the autoimmune disorder celiac disease. The team, based at the Institute for Sustainable Agriculture in Cordoba, Spain, is making use of the new and highly effective CRISPR gene editing to eliminate the majority of the gliadins in wheat.
    Gliadins are the gluten proteins that trigger the majority of symptoms for people with celiac disease.
    As part of their efforts, the team has conducted a small study on 20 people with “gluten sensitivity.” That study showed that test subjects can tolerate bread made with this special wheat, says team member Francisco Barro. However, the team has yet to publish the results.
    Clearly, more comprehensive testing would be needed to determine if such a product is safely tolerated by people with celiac disease. Still, with these efforts, along with efforts to develop vaccines, enzymes, and other treatments making steady progress, we are living in exciting times for people with celiac disease.
    It is entirely conceivable that in the not-so-distant future we will see safe, viable treatments for celiac disease that do not require a strict gluten-free diet.
    Read more at Digitaltrends.com , and at Newscientist.com

    Jefferson Adams
    Celiac.com 04/16/2018 - A team of researchers recently set out to investigate whether alterations in the developing intestinal microbiota and immune markers precede celiac disease onset in infants with family risk for the disease.
    The research team included Marta Olivares, Alan W. Walker, Amalia Capilla, Alfonso Benítez-Páez, Francesc Palau, Julian Parkhill, Gemma Castillejo, and Yolanda Sanz. They are variously affiliated with the Microbial Ecology, Nutrition and Health Research Unit, Institute of Agrochemistry and Food Technology, National Research Council (IATA-CSIC), C/Catedrático Agustín Escardin, Paterna, Valencia, Spain; the Gut Health Group, The Rowett Institute, University of Aberdeen, Aberdeen, UK; the Genetics and Molecular Medicine Unit, Institute of Biomedicine of Valencia, National Research Council (IBV-CSIC), Valencia, Spain; the Wellcome Trust Sanger Institute, Hinxton, Cambridgeshire UK; the Hospital Universitari de Sant Joan de Reus, IISPV, URV, Tarragona, Spain; the Center for regenerative medicine, Boston university school of medicine, Boston, USA; and the Institut de Recerca Sant Joan de Déu and CIBERER, Hospital Sant Joan de Déu, Barcelona, Spain
    The team conducted a nested case-control study out as part of a larger prospective cohort study, which included healthy full-term newborns (> 200) with at least one first relative with biopsy-verified celiac disease. The present study includes 10 cases of celiac disease, along with 10 best-matched controls who did not develop the disease after 5-year follow-up.
    The team profiled fecal microbiota, as assessed by high-throughput 16S rRNA gene amplicon sequencing, along with immune parameters, at 4 and 6 months of age and related to celiac disease onset. The microbiota of infants who remained healthy showed an increase in bacterial diversity over time, especially by increases in microbiota from the Firmicutes families, those who with no increase in bacterial diversity developed celiac disease.
    Infants who subsequently developed celiac disease showed a significant reduction in sIgA levels over time, while those who remained healthy showed increases in TNF-α correlated to Bifidobacterium spp.
    Healthy children in the control group showed a greater relative abundance of Bifidobacterium longum, while children who developed celiac disease showed increased levels of Bifidobacterium breve and Enterococcus spp.
    The data from this study suggest that early changes in gut microbiota in infants with celiac disease risk could influence immune development, and thus increase risk levels for celiac disease. The team is calling for larger studies to confirm their hypothesis.
    Source:
    Microbiome. 2018; 6: 36. Published online 2018 Feb 20. doi: 10.1186/s40168-018-0415-6