• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Member Statistics

    72,016
    Total Members
    3,093
    Most Online
    Blonde121057
    Newest Member
    Blonde121057
    Joined
  • Announcements

    • admin

      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
  • 0

    WHY HAVE I GOT A SORE TUMMY?


    Dr. Rodney Ford M.D.


    • Journal of Gluten Sensitivity Autumn 2015 Issue - Originally published October 19, 2015


    Celiac.com 01/20/2016 - I've got a sore tummy! So many children say they have tummy pain. I see them every day in my clinic. Is this attention seeking or actual pain?
 They often say: "I've got a sore tummy", or "My tummy's sore", or
 "Tummy hurt", or "I've an ache in my tummy" or "Why is my tummy sore?"


    Ads by Google:




    ARTICLE CONTINUES BELOW ADS
    Ads by Google:



    This is such a common complaint that mostly these symptoms are ignored or explained away as attention seeking. However, I have found that the majority of these children with so-called 'chronic abdominal pain' are affected by gluten sensitivity.

    I've got a sore tummy?
    Attention seeking or actual pain? In my experience, these children are in real pain. They need investigation and treatment. They need help for their tummy pains to go away. Yes, sometimes children do mix up the urge to do a poop with a pain (they feel uncomfortable before they do a poop), and it is gone when they poop. Some children mistake hunger as a pain. But most children with recurring "sore tummies" have a different pain. They are sore, in pain and really hurting. Can you imagine how they must feel when their pain is just ignored by their parents?

    Should children be expected to put up with tummy pains?
    Unfortunately, many health professionals and pediatricians are still living with teachings from the past. They refer to the writings of the 1960's. As 50 years ago it was believed that a child complaining about a tummy pain was being "bad" or "naughty". Their discomfort and pain was dismissed as "nothing serious" and told "they'll grow out of it" (the authors of these books were John Apsley "Child Development" and Professor Ronald Illingworth "The Development of the Infant and Young Child: Normal and Abnormal").

    I totally disagree with them. Long ago when they wrote their books, they did not have any blood tests available to diagnose gluten-related disorders; nor did they have any knowledge about gluten or celiac disease; nor was the role of food allergy understood. Consequently, most common symptoms, including chronic tummy pains, were simply attributed to "the state of being a child"!

    How many symptoms do you need to have? How severe do your symptoms have to be? How sick do you need to be? – before anyone will take your illness seriously? Why should we ignore a distressed child? Why should they be told "you will grow out of it"?

    These children have real pains. These children warrant serious attention. These children need help and understanding for their symptoms. Some of these children have unrecognized gastric reflux symptoms; some have celiac disease; some have Helicobacter pylori infection; some have chronic constipation; some have food intolerances; and many have gluten sensitivity/ intolerance.

    So what do I do in my clinic? Well I request gluten and celiac blood tests for ALL of these children who come and see me with tummy upset. To my surprise (I started this type of testing over 20 years ago), most of these sore-tummy-children have high levels of Anti-Gliadin-Antibody (AGA). When they strictly avoid gluten and go onto a gluten-zero diet—most get completely better. Their tummy pains go away, and often their parents report better mood and energy. Also better appetite and better eating.

    For instance:
    "Thanks for the blood results. A month ago, as soon as I got the first lot of blood results back, I took Mark off gluten all together (as you recommended). There has been a big improvement in him sleeping and he seems a lot happier. I haven't been giving him the reflux medication (Losec) for a good few weeks now: I had upped his dose to two pills a day but there was no improvement until I took him off gluten. So it must of been gluten upsetting his tummy. So at this stage we won't need a follow up appointment as with my family history we are pretty clued up with it all. Thanks for your help sorting Mark, it's greatly appreciated." Mum.

    Please don't just ignore them—please test and treat them! Please do not dismiss what your child is telling you: you may be able to help them. They might have a gluten-related disorder. They are not "attention seeking" they are in actual pain.

    See "The Gluten Syndrome" for more details. Also see Dr Rodney Ford's latest Kindle book: "Gluten-Related Disorder: Sick? Tired? Grumpy?" (www.GlutenrelatedDisorder.com).


    Image Caption: Image: CC--Cheryl Reed
    0


    User Feedback

    Recommended Comments

    I have had "tummy" pain since I was 4 or 5 years old...I am now 75 years old and I was diagnosed with celiac disease 7 years ago..Wish we knew then what we know now...Thank you for the enlightening article on tummy pain.

    Share this comment


    Link to comment
    Share on other sites


    Your content will need to be approved by a moderator

    Guest
    You are commenting as a guest. If you have an account, please sign in.
    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoticons maximum are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • Popular Contributors

  • Ads by Google:

  • Who's Online   5 Members, 0 Anonymous, 1,234 Guests (See full list)

  • Related Articles

    Dr. Ron Hoggan, Ed.D.

    This article appeared in the Spring 2005 edition of Celiac.coms Scott-Free Newsletter.
    Celiac.com 04/10/2005 - Celiac disease is, by definition, a condition in which the intestinal wall is damaged as a result of eating gluten. It is a chronic illness in which the symptoms wax and wane1 for reasons that are not yet understood. Celiac disease is the result of genetic and environmental factors. We now know two HLA markers (DQ2 and DQ8) for the predisposition for celiac disease2. One environmental factor is, of course, the consumption of gluten, but there may be other environmental contributors. Recent research reveals that about 1% of the population suffers from this condition3 although most remain undiagnosed.
    On the other hand, gluten sensitivity is characterized by antigliadin antibodies. This condition afflicts at least 12% of the general population4 and is found in patients with a wide variety of autoimmune diseases. In some studies of neurological diseases of unknown origin, a majority of patients show signs of gluten sensitivity4. These patients are mounting an immune response to the most common food in the western diet, yet many practitioners consider gluten sensitivity to be a non-specific finding, frequently counseling patients to ignore these test results. This is particularly unfortunate since a strict gluten-free diet has repeatedly proven helpful to patients who are fortunate enough to consult a practitioner who is versed in gluten sensitivity and its connection with autoimmunity.
    Untreated celiac disease carries an added risk for a wide variety of additional autoimmune diseases. The most likely cause of this predisposition to additional autoimmune disease is a condition sometimes referred to as leaky gut syndrome. We know that gluten causes intestinal damage. We also know that this damage allows large undigested and partly digested proteins to leak into the bloodstream through the damaged intestinal wall. This leakage results in immune system production of antibodies to attack these foreign proteins as if they were invading microbes. The result is the production of a huge variety of selective antibodies, and each type recognizes a particular short chain of amino acids located somewhere in the proteins structure. Unfortunately, our own tissues can contain very similar or identical sequences of amino acids. Hence, by a process called molecular mimicry, we are producing antibodies that attack both the foreign food proteins that are leaked into our blood through the damaged intestinal wall, and similar amino acid sequences in our own tissues, often resulting in an autoimmune disease5.
    The supposedly non-specific antigliadin antibodies in gluten sensitivity provide two important pieces of information: 1) That the intestinal wall has been damaged and is permitting leakage of food proteins into the bloodstream, and; 2) That the dynamic contributing to increased autoimmunity in celiac disease may well be an important contributing factor in gluten sensitivity5. The currently common view that celiac disease is a serious illness, while disregarding gluten sensitivity, is dangerous to gluten sensitive patients.
    This bias is also a divisive element in the gluten-sensitive/celiac community. Whether a person has "biopsy proven" damage to the intestinal wall, if this person gets sick from eating gluten, or mounts an immune response to gluten, we are all in the same leaky boat (please pardon the pun). We need to work together to get a better understanding of gluten sensitivity in all its forms (including celiac disease). As a community, we need to discourage any kind of dismissal of illnesses that are partly or wholly mediated by gluten.
    If we can stand together in our quest for widespread recognition of the damaging impact of gluten consumption, we can all enjoy a healthier life. Our descendants will also inherit a more gluten-savvy world.
    Ron Hoggan is an author, teacher and diagnosed celiac who lives in Canada. His book "Dangerous Grains" can be ordered at Celiac.com. Rons Web page is: www.DangerousGrains.com
    Sources:
    Cooke W, Holmes G. Coeliac Disease. Churchill Livingstone, New York, N.Y. 1984. Fasano A. Celiac disease--how to handle a clinical chameleon.
    N Engl J Med. 2003 Jun 19;348(25):2568-70. Fasano A, Berti I, Gerarduzzi T, Not T, Colletti RB, Drago S, Elitsur Y, Green PH, Guandalini S, Hill ID, Pietzak M, Ventura A, Thorpe M, Kryszak D, Fornaroli F, Wasserman SS, Murray JA, Horvath K. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study. Arch Intern Med. 2003 Feb 10;163(3):286-92. Hadjivassiliou M, Grunewald RA, Davies-Jones GA. Gluten sensitivity as a neurological illness. J Neurol Neurosurg Psychiatry. 2002 May;72(5):560-3. Braly J, Hoggan R.. Dangerous Grains, Penguin-Putnam-Avery, New York, N.Y., 2002.

    Dr. Rodney Ford M.D.
    Celiac.com 03/15/2016 - "Creating health comes down to the food we eat and how we choose to live our lives." – Dr. Terry Wahls
    Lots of people find it hard to believe that such a common food as wheat/gluten could possibly be implicated in causing skin diseases. They say something like this: "Everyone eats wheat, but not everyone gets skin troubles—so it can't be wheat!" This logic is flawed. I have written this book so that you can read all of the evidence about gluten-related skin disease in one place. "Cutaneous gluten sensitivity" is one of the new terms applied to the group of gluten-related skin diseases.
    Max belongs to this leg in the photo. He is very itchy and sore. He is 18-years old and not getting any better—in fact he has been getting worse. He came to me seeking help. Mum wrote,
    "Max has been suffering from debilitating dermatitis over his whole body for the last 3 years. He is withdrawn, self-conscious, covered with sores, and feels he will never get better. Unfortunately, the creams he is putting on just seem to irritate him."
    So, I am investigating him for gluten-related eczema. It will be a relief for him if the tests come out positive for gluten. What should be the strategy to get him better?
    I don't want him to go through the rest of his life like Elizabeth Whitesell, from the Gluten Zero Facebook page, who explains:
    "I was frantic with itching before my celiac diagnosis. The dermatologists never addressed the possibility of celiac, just gave me new treatments for my itching. I cannot name all of the creams, oils, pills and ointments I used, along with a blue-light treatment. Steroid shots, creams and pills were a major part of my treatment." "I received some temporary relief and never traveled without my creams. Itching on my hands was so fierce that I carried a frozen ice block (the kind used in coolers) in my purse. When we were at a public event, I gripped my hands around the ice to ward off a noisy itching attack. Ice was my godsend to keep the itching from following its neurological path. All of my blouses had blood dot stains from clawing my upper arms like I was an ape when into full-time mode." "My best treatment was freezing 2-liter bottles of water and holding them between my knees as I laid down to go to sleep. If I could fall asleep before the freaking stage began, I was on a roll. More frozen bottles were kept in a cooler by my bed for when the thaw came and I was too tired to walk downstairs to replace them." "What a saint of a husband I had. Once I went gluten-free, so many changes came for the better. I did not suddenly notice the absence of itching but, one day, looked back and realized I was not traveling and sleeping with frozen bottles anymore. I hope dermatologists are more informed now." Skin Diseases Associated with Celiac Disease
    Gluten is known to cause skin disease. Gluten can definitely cause itchy skin. Collectively, these skin-diseases provoked/triggered/caused by gluten can be called "cutaneous gluten sensitivity". This is an umbrella term which includes:
    Dermatitis Herpetiformis (DH); Celiac associated skin diseases; Non-celiac associated skin diseases. So what is the evidence?
    1) Dermatitis Herpetiformis: To summarise the previous chapter, the classic skin complaint is dermatitis herpetiformis. It usually affects the elbows, knees, buttocks, scalp, and back. It begins as little bumps that then change into little blisters. People say that they are driven mad by the itching. It is caused by an immune reaction to gluten in the skin. Microscopic clumps of immune-complexes get deposited just under the skin. This creates the very itchy rash. These tiny particles of immunoglobulins can take years to clear up once you start on a gluten-free diet. It is reported that it can take up to ten years before you make a full recovery.
    2) Celiac Associated Skin Diseases: Marzia Caproni and co-workers have detailed the skin diseases that have so far been associated with celiac disease (and perhaps by implication, with gluten).
    In their paper, "Celiac Disease and Dermatologic Manifestations: Many Skin Clues to Unfold Gluten-Sensitive Enteropathy" they include common skin complaints that most people do not associate with gluten-illness:
    Dermatitis Herpetiformis Psoriasis Alopecia Areata Chronic Urticaria Hereditary Angioneurotic Edema Cutaneous Vasculitis Atopic Dermatitis Eczema Vitiligo They also remind us that enamel defects, delayed eruption, recurrent aphthous ulcers, cheilitis, and atrophic glossitis are gluten-associate conditions and that "the diagnosis of celiac disease can sometimes be made from a smile!"
    Their important message is that anyone with any of these conditions should be investigated for celiac disease.
    3) Non-celiac Associated Skin Diseases
    The skin is a frequent target organ in gluten-sensitivity. The skin, hair and teeth can all be disturbed by gluten. However, eczema is a much more common manifestation of gluten-sensitivity.
    Humbert and his dermatology colleagues (Gluten intolerance and skin diseases, 2006) wrote this about gluten and skin disease:
    "Gluten sensitivity, with or without celiac disease symptoms and intestinal pathology, has been suggested as a potentially treatable cause of various diseases. There have been numerous reports linking celiac disease with several skin conditions. Dermatitis herpetiformis is actually a skin manifestation of celiac disease. Autoimmune diseases, allergic diseases, psoriasis and miscellaneous diseases have also been described with gluten intolerance." "Dermatologists should be familiar with the appraisal of gluten sensitive enteropathy and should be able to search for an underlying gluten intolerance. Serological screening by means of anti-gliadin, anti-endomysial and tissue-transglutaminase antibodies should be performed. Gluten intolerance gives rise to a variety of dermatological manifestations which may benefit from a gluten-free diet." This is an important statement.
    In 2010, Korossy reported a skin eruption that he called "gluten-sensitive dermatitis" which he says is clinically indistinguishable from dermatitis herpetiformis but lacks the IgA connection. (Non-dermatitis herpetiformis gluten-sensitive dermatitis: a personal account of an unrecognized entity, Korossy, 2010).
    Cutaneous Gluten Sensitivity
    Bonciolini et al (2015) have made a study of the skin manifestations of people with Non-Celiac Gluten Sensitivity (NCGS) Cutaneous Manifestations of Non-Celiac Gluten Sensitivity: Clinical Histological and Immuno-pathological Features, Bonciolini et al 2015
    They have adopted the term 'cutaneous gluten sensitivity'. They describe 17 consecutive patients affected by NCGS. They had excluded celiac disease and wheat allergy. They said:
    "The skin lesions observed were similar both to eczema and psoriasis and did not show a specific histological pattern. Furthermore, no serological marker was useful to identify these patients. The only data common to most of these patients affected by NCGS associated to non-specific skin manifestations are: the itching; the presence of C3 at the dermoepidermal junction; a rapid resolution of lesions when adopting the gluten free diet. Therefore, dermatologists must be familiar with the cutaneous manifestations and symptoms of gastrointestinal disorders. An appropriate understanding, work-up, consultation and management will help to identify the important cutaneous–gastrointestinal connection and ensuring that this important gastroenterological disease in patients with skin manifestations is not ignored.
    Finally, we suggest an accurate follow-up of all patients who report intense itching and gastrointestinal disorders, even when histology and morphology of the skin lesions do not identify a specific skin disease.
    We also suggest the adoption of gluten-free diet for at least three months assessing any positive effects."
    A Family Affected by Cutaneous Gluten Sensitivity
    Katrina Ojakaar writes this about the severe skin problems in her family that were eventually shown to be related to gluten-harm: "I had terrible eczema on my legs as a child. As an adult I had recurrent eczema on my eyelids and hands in addition to severe dry, itchy skin on my scalp, back, and legs. I also developed rosacea on my face that was treated unsuccessfully with antibiotics and topical ointments. At the age of 44, I had a lab test that showed gluten was making me sick. I immediately stopped eating food that contained gluten and within weeks watched my skin transform. I no longer have raw eczema patches or dry skin; and my rosacea has disappeared." "My daughter, Lila, had horrific diaper rash as an infant and nothing seemed to heal her sore bottom. Even as she grew out of diapers, her bottom was always irritated. Lila's skin was also very dry and irritated. Lotions and even plain bath water caused a sting. But when Lila stopped eating gluten, her skin simply healed. She now has smooth, soft, and moist skin without irritation and enjoys a relaxing bath." "My mother suffered from psoriasis on her legs and scalp until she stopped eating gluten at the age of 72. She is now 75, and the psoriasis has disappeared. Her skin is healthy, and she doesn't eat gluten, dairy, or oats." My father had rosacea on his face and was diagnosed with the autoimmune disease called lichen planus about 12 years ago. He had raw, bleeding sores on his scalp. And his fingernails and toenails disintegrated where he was left with only tender skin. Three years ago my dad stopped eating gluten, and two months later, his fingernails started to grow back. He now has a thin narrow layer of nail at the age of 80. The lesions related to his lichen planus disease on his scalp are gone. And, my father's rosacea, like mine, also healed when he stopped eating gluten." Keratosis Pilaris
    Keratosis pilaris, or sometimes called 'chicken skin' is blamed on gluten by many people. It is very common, occurring in about 10% of people, and there seems to be a hereditary nature to it. It tends to lessen with age, being prominent in toddlers. Any gluten connection remains speculative.
    Anne Luther writes:
    "One of the many pleasant surprises I had when I stopped eating gluten was the disappearance of three different skin rashes. There were non-itchy bumps on my back and arms, non-itchy red bumps on the soles of my feet and a very itchy rash on my legs behind my knees. None of these were ever diagnosed by a doctor but they all disappeared after I had totally eliminated gluten from my life." Keratosis pilaris is skin condition characterized by rough patches of skin caused by small, acne-like bumps. It is found mostly on the upper arms, upper thighs, and cheeks. It can feel a bit like sandpaper or goose-flesh. These little bumps are usually white, but can be red. They do not hurt. Sometimes they can feel a bit itchy.
    Keratosis pilaris seems to be caused by a build-up of keratin, the protein that helps create the protective skin barrier. Once keratin has formed into a hard plug at the opening of the hair follicle, this can block the oil and sweat glands. Consequently, these substances cannot escape out onto the skin, and results in these patches of rough, bumpy skin.
    I see a lot of keratosis pilaris in my Clinic. The gluten connection not clear, but many parents report its disappearance on a gluten-free diet.
    What happened to Max?
    Remember Max's legs at the beginning of this Chapter? Well it turned out that Max had two copies of the HLA gene DQ2 which gives him a 1-in-7 chance of developing celiac disease. It also increases his likelihood of having gluten sensitivity. However his blood tests for gluten (AGA) and celiac disease (tTG) were negative. But he did have evidence of a wheat allergy from his EAST tests. His total IgE levels were extremely high as well (over 4000), showing his heightened allergic status.
    So he has now embarked on a trial of a gluten-free diet. Mum says, "I feel that we are starting to get to the bottom of it now." It will be another 6 months before we know his results of his gluten-free diet. It can take a long time to heal.
    This was an excerpt from Dr Rodney Ford's latest eBook: "Dermatitis Eczema: Gluten Wheat – Solving the Eczema Puzzle." Available at: http://www.GlutenEczema.com

    Curtiss Ann Matlock
    Celiac.com 03/30/2016 - The woman's voice, polite but firm came over the line: "We cannot accommodate your mother."
    "You can't accommodate her?" I wondered if I'd heard wrong.
    "No. We just had a team meeting and it was decided we cannot accommodate your mother because of her diet."
    "Oh." The line hummed as I took in both the news and the woman's frosty tone. The previous week the woman, the admissions coordinator of the nursing home, had been all warm and inviting, even eager to have my mother.
    Finally I came out with, "Well…thank you for letting me know," and the line clicked dead as the woman hung up.
    I had not seen this coming. I hadn't realized that a nursing home would, or could, turn down a patient based on the need for a therapeutic diet. I thought the reason for a nursing home was to care for ill people.
    When I toured the nursing home, the woman proudly proclaimed the facility as being on Newsweek's top recommended list, and gave the appearance of understanding my mother's gluten-free diet, saying, "My niece has told me of it. She's convinced me to eat more gluten-free." The woman went so far as to take notes on my mother's preferences, her love of sleeping in and drinking coffee, and then plopped in my arms a thick packet of Medicare forms. In all ways she had been exceedingly pleasant. Indeed everyone I met at the facility had been pleasant. Purring cats roamed the facility's hallways, birds sang from cages, and they even had a pot-bellied pig in the shade of a tree that could be seen through a window, all for the comfort of the patients. It struck me that they could do these many things for their patients, but feeding one small woman with celiac disease a gluten-free diet was beyond them.
    My mother is eighty-eight years old, a pixie with a contagious smile and genteel Southern manner. She was diagnosed with celiac disease at the age of seventy-five. At that time she was on daily use of a nebulizer, sleeping half days and could not leave home and the bathroom unless she took Imodium. The diagnosis and strict adherence to the gluten-free diet returned her to an active life. She took up painting and driving her aging neighbors out to enjoy shopping.
    A year ago, in rapid succession, a mass was found in one of her lungs, glaucoma took her sight and a stroke impaired her right hand and memory. For months, she required caregivers around the clock. Today she is mobile with the aid of a walker and can manage nights on her own. She can do one thing for herself, and that is get herself to and from the bathroom. Everything else must be done for her—bathing and dressing and maintaining clothes, medications, food preparation, working the television and her bedside radio. On occasion she will get confused and afraid, so I try not to leave her alone for more than an hour. With the aid of private caregivers and hospice assistance, I have been able to keep her in my home, where she has lived for the past six years. However, her funds are depleting for private care, and there is no one to help me care for her.
    After the disappointing phone call from the nursing home admissions coordinator, I sat thinking over all the above facts and allowing myself a sizable hissy fit. Then I gathered myself together and took another look at the nursing home facilities in my area.
    For the next two weeks, I sought more information and made lists. My plan was to be better prepared in knowledge and approach. Running on the theory that it is lack of knowledge that causes the fear of a situation, I put together information on my mother: a list of her conditions, needs and food preferences. Because of no longer having teeth, nor wearing dentures, and her advanced age, she needs soft foods, her favorites being eggs and Vienna sausage, puddings, bananas. At the time she would eat mashed chicken and some vegetables, all simple things. I wanted to reassure the admissions director and staff of the nursing facilities that my mother was easily cared for, and that I was willing to help with her food. I also had two brochures from Gluten Intolerance Group: a single sheet on celiac disease itself, and a color glossy brochure, put together in cooperation with the National Foundation for Celiac Awareness, entitled Celiac Disease in the Older Adult. I hoped to engage the interest of people whose primary aim and business is providing healthcare to the elderly.
    What I discovered is a general lack of any interest in the welfare of the elderly.
    The young woman admissions coordinator of my second choice of facilities, a modern, airy facility, answered my question about their kitchen and possible meeting with the dietary manager, with, more or less, "I've shown you around the building. I don't know what else you want to know." Then she added, "And right now we don't have any female beds available."
    At another facility, the admissions coordinator brushed aside any idea of speaking with the dietician. She did not know what celiac disease was, but assured me they could, "probably handle it."
    The best facility that I found had a waiting list of at least forty names. They stayed so full that they did not provide temporary respite care. Even so, the admissions coordinator showed me around the building, which was very old, and the sight of an elderly blind woman slumped uncomfortably in a wheelchair in the hallway haunted me. Yet their menu posted on the bulletin board seemed promising. "We do home-cooking," the coordinator said proudly. Then she glossed over my request to see their kitchen and meet the dietician. She admitted to never having heard of celiac disease, but said, "We've had many people with uncommon conditions," and put my mother's name on the waiting list. My eye followed her fingers working the pen far down the yellow legal pad. When I offered to leave the brochures about celiac disease with her, she did not even glance at them, but dismissed them with a sweeping wave, saying, "Oh, there's no need."
    Weeks passed. My mother's hospice social worker joined in on the search. She found a facility willing to give the respite stay a chance. "They've had a previous celiac patient," she said.
    By now I was quite skeptical, but also curious with this news. The facility she suggested was the closest near my home, and I could easily visit each day. I agreed to meet with the admissions coordinator.
    The woman said that, yes, the facility had had a previous patient with celiac disease. It was the experience with this patient, who had been uncooperative and would steal food off other patients' trays, that caused the hesitation on their part. "But we're told your mother wouldn't do that," she said.
    Upon studying the fact that my mother was quite incapable of snatching food anywhere, the admissions coordinator said they were willing to offer respite care. I was impressed (surprised is the better word) when the coordinator called the dietary manager to meet me. He read the diet listing I had made up for my mother and said they would have no trouble in providing for her. I volunteered to bring her favorites of chocolate pudding and canned peaches and Vienna sausage for times they might have things she could not eat, and of course any homemade gluten-free cakes.
    We packed my mother up, and she went for her week respite at the facility. Her long-time caregivers went as well to provide support in the strange environment, help her learn her way to the bathroom, and to circumvent the inevitable glitches.
    The first day for lunch in the dining room, my mother was brought Vienna sausages (which I had provided), nothing else. My mother's caregiver went to the kitchen and inquired of the cooks, surveyed the kitchen and the menu of baked chicken and broccoli and how it was cooked and said, "She can have that." We began to wonder how the previous patient had been fed. I also began to wonder if anyone even glanced at the diet I had printed for my mother.
    However, the glitches that week were small. My mother ate well, enjoying their broccoli and branching out to embrace canned spinach. We learned the main reason the facility could and did for that week, succeed in feeding my mother quite well was that they had a full working kitchen and did not rely on food service, where all the meals come prepackaged.
    The respite week also worked because of my mother's private caregivers. They monitored the food and educated the kitchen staff. The dietary manager went so far as to voice his gratitude to one of the caregivers for helping them learn what my mother and could not eat.
    While it appeared no one read any of the dietary information, over all the stay went well enough that a month later, I decided to try it for long term care. The plan was to have her private caregivers ease my mother through the transition for approximately a month, and then gradually reduce their hours, as the nursing home staff learned my mother's needs. We believed it possible to educate the staff.
    The first week went fairly smooth, with a few expected glitches. After that, things went downhill. A semi-soft diet had been requested; this never materialized. My mother's food would be placed on her tray in her room, and left, covered. Either my mother's private caregivers or I had to come in and help my mother eat. Mom's private caregivers continued to mash any meat and large chunks of vegetables, such as sweet potato served still in the skin. They continued to intercept sandwiches on bread and dishes of cake and snack cookies left on her tray. Throughout all of this, my mother's caregivers or I consulted with the dietary manager and the kitchen staff. We thanked them for the good food when it came. We explained again what she could and could not have. We formed the habit of checking each day's menu and writing out foods from that menu that my mother could eat. The kitchen staff accepted these menus and taped them near the stoves. When there was nothing on the menu that my mother could or would eat, we suggested easy canned substitutions. Sometimes she got these substitutions, sometimes not.
    Then came the day when I was told that for the evening meal my mother had been served a hotdog and fries of some sort, both too hard for her, or anyone, to eat. (Keep in mind we are paying for this food.) My mother's caregiver took her back to the room and served my mother her snack cakes and pudding I had provided. Her roommate shared in the cakes, because she had come in too late from her dialysis treatment to get dinner. Why her tray had not been saved for her, I have no idea. I had never seen this woman provided any sort of special diet, and she was both diabetic and had kidney disease.
    The following morning I also I learned one of the kitchen staff responsible for following the therapeutic diet said to my mother's caregiver: "Oh, she doesn't need that diet. That's all made up."
    I faced the fact that providing for my mother was too much trouble for the staff, and they were simply unwilling. My mother was never going to get the food nor the care in eating that she would require at this facility.
    As of this writing, my mother is back home. Private caregiver hours have been drastically reduced. I am able to do this, for now.
    Here are some chilling facts: Studies indicate that today in our country not only are the incidents of celiac on the rise in all age groups, but the median age for celiac diagnosis is just under 50 years of age, with one-third of newly diagnosed patients being over the age of 65.* (Celiac Disease in the Elderly, Shadi Rashtak, MD and Joseph A. Murray, MD)
    This is the age group who are the primary caregivers for themselves and their parents. This is the age group who more often must undergo surgeries and stays in rehabilitation nursing facilities.
    Couple the above figures with the fact that we are an aging population. At the current rate, the number of people age 65 and older is projected to double between now and 2050. The baby boomers, responsible for the great population growth, now average over the age of 65.* (An Aging Nation: The Older Population in the United States, by Jennifer M. Ortman, Victoria A. Velkoff, and Howard Hogan, U.S. Department of Commerce, Economics and Statistics Administration, U.S. Census Bureau.)
    These simple facts paint a picture of a growing challenge. We must be able to provide short and long term nursing home care for the many celiac patients around us today—my mother, myself, the number of over-60 celiacs I've talked to—as well as the tidal wave looming on the horizon.
    In addition, we have other food intolerances on the rise, and we have the needs of those with diabetes and kidney disease and other conditions requiring dietary restrictions. At present, all of these people, not only those with celiac, are being overlooked and discounted.
    I have no solid answers to this immense problem. I do have suggestions on things that can be started.
    The celiac community must recognize and begin to talk seriously about the problem of dietary care in nursing homes. Printing up a glossy brochure with the advice to have the doctor write an order for a therapeutic diet is a start. We have to step out more aggressively with ways to educate and implement therapeutic diets in a real way. We have programs in place educating restaurants and the food industry. Let's get aggressive with the health industry.
    Of course, my experience is that these facilities do not want to be educated. This is where legislation is required. We need to lobby for legislation that requires compliance in the nursing facility industry, in the same way that food labeling compliance was attained.
    Further, we need to support the push for legislation for a required number of CNAs per patient in nursing home facilities. At present, there are laws only governing the minimum number of RNs required per patient in nursing facilities. * (Minimum Nurse Staffing Ratios for Nursing Homes, Ning Jackie Zhang; Lynn Unruh; Rong Liu; Thomas T.H. Wan, Nurs Econ. 2006;24(2):78-85, 93.) There are no mandatory minimums for the number of CNAs, the people who actually do the bulk of the patient care—those who would monitor a person's diet and help that person to eat. At present the nursing home facility is allowed to choose for themselves the number of CNAs they need.
    I remarked to a friend that there were a number of camps for children with celiac disease, places the child could get away and enjoy and eat safely.
    "Well, what about for the elderly?" my friend said. "It seems if they can do it for kids, they could do it for the elderly."
    What about the elderly? This is our new challenge—to make certain those elderly people with food sensitivity needs are well cared for.

    Dr. Tom O'Bryan
    Celiac.com 04/18/2016 - In the last 3 years, there has been an evolving spectrum around celiac disease and gluten sensitivity. The acceptance of Non-Celiac Gluten Sensitivity (NCGS) in the medical community as a distinct clinical entity has gone from that of being an orphaned child crying in the world for recognition, to an accepted, unique component of the triad of gluten-related disorders.(i) Differentiating among gluten-related disorders, guides clinicians in making an accurate diagnosis and recommending specific dietary, nutritional and other medical advice; however, clinical and laboratory diagnosis is complex and evolving.(ii)
    Gluten sensitivity is a state of heightened immunological responsiveness to ingested gluten in genetically susceptible people. It represents a spectrum of diverse manifestations, of which, the gluten sensitive enteropathy known as celiac disease is one of many. Adverse reactions to the toxic family of gluten proteins found in wheat, barley, rye, and their derivatives may trigger a heterogeneous set of conditions, including wheat allergy (IgE), NCGS, and celiac disease, that, combined, affect between 10–35% of the population.(iv,v,vi,vii)
    TRUE or FALSE
    1. Even in the presence of negative small bowel biopsy, positive Endomysial antibody (EMA) IgA predicts development of celiac disease.
    2. The prevalence of celiac disease varies by race/ethnicity, with a marked predominance among non-Hispanic whites.
    3. With more sophisticated diagnostic markers now available, the majority of celiac disease cases are being recognized.
    4. Complete histological normalization of the small-intestinal mucosa occurs in the majority of adult patients after commencing a gluten-free diet.
    5. An American College of Gastroenterology Task force recommends that patients presenting with diarrhea-predominant IBS type symptoms should be serologically tested for celiac disease.
    6. What percent of individuals with NCGS suspect they may have a problem with wheat?
    A. 32%
    B. 76%
    C. 50%
    D. 12%
    7. Of the following three scenarios, which is the most dangerous for increased mortality in celiac disease?
    A. Total villous atrophy
    B. Positive celiac serology with negative villous atrophy
    C. Increased intraepithelial lymphocytes (IEL) with negative serology and negative villous atrophy
    8. In differentiating wheat sensitivity from IBS, which one of the following features is significantly more frequent in wheat sensitive patients compared to IBS patients?
    A. Anemia
    B. Self-reported fructose intolerance
    C. Weight gain
    D. Self-reported lactose intolerance
    9. Compared to patients with celiac disease, what are the characteristic features, other than self-reported wheat intolerance, of patients with wheat sensitivity?
    A. Anemia and family history of celiac disease
    B. Weight loss and increased IEL count
    C. Coexistent atopy and food allergy in infancy
    D. Increased serum C reactive protein and erythrocyte sedimentation rate
    Current therapeutic protocols for celiac disease, NCGS and wheat allergy include dietary counseling from a trained professional, nutritional therapy addressing biomarkers of malabsorption and creating a more balanced intestinal environment.(ix) Currently, there are no approved pharmaceutical treatments for this silent epidemic, however a number of Phase 3 trials are underway. Promising gluten-based research is currently being done including wheat alternatives and wheat selection, enzymatic alteration of wheat, oral enzyme supplements and polymeric binders as exciting new therapies for treatment of celiac disease.
    There appears to be at least two distinct groups of NCGS individuals. There are those who are sensitive to wheat and those who have multiple food sensitivities. Furthermore, the multiple food sensitivity group had a higher prevalence of coexisting atopy or food allergy in infancy.(xi) It is critically important to identify whether a NCGS individual has multiple food sensitivities or exclusively has NCGS.(xii) This suggests the world of NCGS is greater than just one mechanism and invites the clinician to explore its pathophysiology.
    ANSWERS
    1. True
    2. True
    3. False
    4. False
    5. True
    6. C
    7. C
    8. A
    9. C
    Request the complete article, complete answers and references by sending a request to info@theDr.com.
    References
    (i) Ludvigsson JF, Leffler DA, Bai JC, Biagi F, et.al., The Oslo definitions for coeliac disease and related terms, Gut. 2013 Jan;62(1):43-52
    (ii) O'Bryan T, Ford R, Kupper C, Celiac Disease and Non-Celiac Gluten Sensitivity-An Evolving Spectrum, in Advancing Medicine with Diet and Nutrients, Johns Hopkins, CRC Press, December 2012
    (iii) Carroccio A, Mansueto P, Iacono G, Soresi M, et.al., Non-celiac wheat sensitivity diagnosed by double-blind placebo-controlled challenge: exploring a new clinical entity, Am J Gastroenterol. 2012 Dec;107(12):1898-1906
    (iv) Catassi, C. and Fasano, A. 2008. Celiac disease. Curr Opin Gastroenterol 24: 687-91.
    (v) Anderson, L.A., McMillan, S.A., Watson, R.G., et al. 2007. Malignancy and mortality in a population based cohort of patients with coeliac disease or 'gluten sensitivity'. World J Gastroenterol 13: 146-51.
    (vi) Ferguson, A., Gillett, H., Humphreys, K., and Kingstone, K. 1998. Heterogeneity of celiac disease: clinical, pathological, immunological, and genetic. Intestinal Plasticity in Health and Disease. 859: 112-20.
    (vii) Constantin, C., Huber, W.D., Granditsch, G., Weghofer, M. and Valenta, R. 2005. Different profiles of wheat antigens are recognised by patient suffering from coeliac disease and IgE–mediated food allergy. Int Arch Allergy Immunol 138:257-66.
    (viii) Vermeersch P, Geboes K, Mariën G, Hoffman I, Hiele M, Bossuyt X. Diagnostic performance of IgG anti-deamidated gliadin peptide antibody assays is comparable to IgA anti-tTG in celiac disease. Clin Chim Acta. 2010 Jul 4;411(13-14):931-935.
    (ix) Ibid, reference 2
    (x) Stoven S, Murray JA, Marietta E., Celiac disease: advances in treatment via gluten modification, Clin Gastroenterol Hepatol. 2012 Aug;10(8):859-62
    (xi) ibid reference 3
    (xii) Bondsa, R., Midoro-Horiutib, T. and Goldblum, R. 2008. A structural basis for food allergy: the role of cross-reactivity. Current Opinion in Allergy and Clinical Immunology 8: 82-86.
    (xiii) Kurppa K, Ashorn M, Iltanen S et al. Celiac disease without villous atrophy in children: a prospective study. J Pediatr 2010;157:373–380
    (xiv) Kurppa K, Collin P, Viljamaa M et al. Diagnosing mild enteropathy celiac disease: a randomized, controlled clinical study. Gastroenterology 2009;136:816–823
    (xv) Mayo Clinic, news release, July 31, 2012
    (xvi) Rubio-Tapia A, Ludvigsson JF, Brantner TL, Murray JA, Everhart JE., The prevalence of celiac disease in the United States. Am J Gastroenterol. 2012 Oct;107(10):1538-44
    (xvii) Tuire I, Marja-Leena L, Teea S, Katri H, et.al. Persistent duodenal intraepithelial lymphocytosis despite a long-term strict gluten-free diet in celiac disease, Am J Gastroenterol. 2012 Oct;107(10):1563-9
    (xviii) Sanders DS, Aziz I. Editorial: non-celiac wheat sensitivity: separating the wheat from the chat! Am J Gastroenterol. 2012 Dec;107(12):1908-12
    (xix) Ludvigsson JF, Montgomery SM, Ekbom A, Brandt L, Granath F., Small-intestinal histopathology and mortality risk in celiac disease, JAMA. 2009 Sep 16;302(11):1171-8
    (xx) Carroccio A, Mansueto P, Iacono G, Soresi M, et.al., Non-celiac wheat sensitivity diagnosed by double-blind placebo-controlled challenge: exploring a new clinical entity, Am J Gastroenterol. 2012 Dec;107(12):1898-906

    Dr. Rodney Ford M.D.
    Celiac.com 04/20/2016 - I am likely to be accused of gluten heresy. That is because I propose that celiac disease and gluten sensitivity usually coexist. By this I mean that they are not mutually exclusive entities.
    In other words, most people who have celiac disease are also gluten-sensitive. Many people who are gluten-sensitive are likely to develop celiac disease with continued gluten exposure (depending on their genetic markers).
    My observations show that the distinction between celiac disease and gluten-sensitivity (the gluten syndrome) is blurred. The purpose of published algorithms and decision trees are designed to separate out celiac disease from other gluten-illnesses. I suggest that this thinking is flawed.
    For example, most flow charts go something like this: (See Flow Chart 1 at left).
    People are selected for celiac-blood-tests for a number of reasons. If your blood tests are positive (and usually if you carry a DQ2/8 gene), then you get an endoscopy to confirm/deny the diagnosis. This allows you to be categorized either Yes-celiac disease or Not-celiac disease. There is no overlap. This is an "us-and-them" scenario.
    However, isolating YES-celiac disease from every other gluten problem does not take into account that people who have gluten-gut-damage may well have other manifestations of gluten-related disorders.
    Such simplistic algorithms (decision trees) strike problems at every decision point. Such as: Who should be tested? Who should be re-tested? When should these tests be done? At what age? On how much gluten? What tests should be done? What are the cut-off levels? How important is carrying the DQ2/8 genes? What about sero-negative celiac disease? How accurate are endoscopic biopsies? Who interprets the Marsh scale? How long should a gluten challenge be?
    Such simplistic algorithms (decision trees) also do not give satisfactory answers to the following questions:
    Why do 10% of people with celiac disease have little or no symptoms, despite having severe small bowel damage (villous atrophy)? This group is called "asymptomatic" celiac disease. Villous atrophy alone cannot account for the majority of gluten-related symptoms. Why do half of the people with celiac disease have autonomic nervous system dysfunction? This is the disturbance of the automatic nerve activity of your internal organs. This cannot be directly attributed to villous atrophy. Why do most people with celiac disease have some brain/mental upset, including the pervasive brain-fog? Many people have neurological disease from gluten but do not have established celiac disease. How can so many "extra-intestinal manifestations" of celiac disease be attributed to intestinal gut damage alone? I am sure that you will have witnessed strong feelings from the defenders of 'celiac-disease-is-a-stand-alone illness'. For instance, read these two opposing comments from Facebook:
    A. "I find it hard to believe that gluten intolerant people (or gluten avoiders) are as strict as us who have celiac disease." B. "I am gluten intolerant (suspected Celiac but I refuse to eat gluten in order to be tested properly) … I am incredibly strict on what I eat." The world of gluten is not black and white! But there remains a tension between those who have "biopsy-proven" celiac disease, and those people who are "gluten-intolerant". However, there is a cross-over between gluten-sensitivity/intolerance and celiac disease. There is no sharp dividing line – there is lots of grey!
    I would like to see the support groups of both celiac disease and gluten sensitivity work together with a focus on their common ground. This is already happening in some countries. Both groups promote an accurate diagnosis and a strict gluten-free diet. But I call into question the accuracy of current diagnostic methodology.
    Another comment from Facebook is a good example of these blurred lines:
    "I had an endoscopy and I have some small intestine damage: increased intraepithelial lymphocytes, shortened villi and duodenitis. The gastroenterologist said I had gluten-sensitivity but because I was not celiac (wasn't Marsh stage 3a), he said that I didn't need to be quite as careful with gluten. But I know I am super sensitive - even a small piece of chocolate with gluten in it makes me sick for a few weeks. I suspect that I either didn't have enough gluten before the endoscopy, or I am in the early stages of developing it."
    This is what I conclude:
    Both groups (people with celiac disease, and people with gluten sensitivity/intolerance) come under the umbrella category of gluten-related disorders. The term non-celiac gluten-sensitivity (NCGS) excludes those with evidence of intestinal damage from gluten. But with time and continued gluten ingestion, some of these people will develop celiac disease. NCGS is part of the gluten-related disorders spectrum (see my book: www.glutenrelateddisorder.com). Both groups have an identical list of possible symptoms. They are both equally harmed by gluten. They are indistinguishable from each other without blood tests and/or endoscopy. For both groups, my recommendation is to be zero gluten. Avoidance of cross-contamination is crucial for everyone. Both groups can be exquisitely sensitive to gluten. Some celiacs experience no symptoms from gluten, making it more of a challenge for them to remain gluten-zero. Some gluten-sensitive people do not yet have overt symptoms but are developing an inflammatory state. Many people who are gluten-sensitive produce antibodies to gluten, AGA (anti-gliadin-antibodies). There is a large literature on this. AGA-positive people are more likely to develop gluten-illnesses. AGA tests are recommended in the Fasano paper the "spectrum of gluten related disorders", for the celiac and gluten sensitivity work-up (particularly for neurological disorders). I use them on a day-to-day basis in my Clinic, and so do many other practitioners. More wheat/gluten harmful proteins have yet to be identified. Early in the development of celiac disease, the person can have significant symptoms, and they may have elevated AGA antibodies, but they may have no evidence yet of intestinal damage. At this stage these two conditions are indistinguishable. How early can you diagnose celiac disease? Do you have to wait until there is substantial intestinal damage so that you can make the classic diagnosis with villous atrophy? Or do you keep on eating gluten until the damage has occurred? Or do you go strictly gluten zero and not know if you are gluten sensitive or have early celiac disease? The HLA gene (DQ2/DQ8) cannot be used as a casting vote. It is my recommendation to abandon gluten as early as possible and not wait until you have substantial intestinal damage, which may never heal. Not only is the gluten intolerant community (this includes celiac disease) confused about gluten-illness. Also, the medical fraternity is confused. The science and clinical issues are rapidly developing whilst most medical practitioners are still looking for the classic celiac with weight loss, malabsorption, and a bloated tummy (and are using an out-of-date simplistic algorithm). Many people request celiac tests of their GPs but are denied the test. The community is much more aware of gluten related disorder than medical practitioners. Yes, there are a lot of issues to think about. These gluten-illnesses are complicated to diagnose. My prediction is that increasing numbers of people will adopt a gluten zero diet. However, almost certainly it is much more than the substance gluten that is making us sick. It will take a long time to unravel all of these strings. Most people are after an easy answer, or a drug, or a vaccine. But I'm sure that it is going to become even more complicated as we learn more. These complexities do not show up in a simplistic algorithm.
    The way for an individual to solve this is to adopt a gluten-zero diet, lifelong.

    Yvonne Vissing Ph.D.
    Celiac.com 05/03/2016 - How do you know when your child has gluten sensitivity, gluten intolerance, or celiac disease? If gluten issues run in your family and you know there is a predisposition to having problems with gluten in foods, then you may be alert to signs that it has been passed on to your child. But if you and your biological family members never had problems with it, then you're not expecting gluten to be an issue. Children arrive with a complicated genetic past that we may not always have the details about. We may not know the health history of the families of our child's other parent, or even sometimes our own. We may not know if anyone had reactions to gluten. Because celiac and gluten sensitivities can appear as chameleons, genes for it may be masked as other health issues. Parents may be a carrier and have no identifiable symptoms at all. People may have celiac disease without ever knowing it.
    It's complicated to raise a child. When they don't feel well, it's hard to figure out when their health problems are physical, emotional, social, or psychosomatic. When it comes to kids, having a belly ache is a common occurrence. So are a variety of symptoms that are linked to celiac disease or gluten intolerance or sensitivity, like headaches, fatigue, skin issues, depression, or GI track problems. When are signs pointing at the normal wear-and-tear of growing up—and when they are related to a syndrome like celiac disease? It takes a significant period of observation to figure this out.
    Celiac disease is regarded to be an immune-mediated enteropathy caused by a permanent sensitivity to gluten in genetically susceptible individuals. The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) found that the prevalence of celiac disease in children between age two-and-a-half and age fifteen ranges from 1 in 80 to 1 in 300 children. This means that in a pediatric practice of 1,500 children there are probably between 5 and 20 children with diagnosed or undiagnosed celiac disease—and potentially a lot more if one adds in gluten intolerance or sensitivities. According to the National Foundation for Celiac Awareness, celiac disease is genetically based, so reactions to gluten are more commonly found in those who have a family history of this autoimmune condition. They collaborated on a multi-phase research project with people diagnosed with celiac disease and at-risk family members who remained untested. Celiac disease was found in 5 to 10 percent of the family members of persons who had been diagnosed with celiac disease. But people may have reactions to gluten yet not have celiac disease. Some may have gluten intolerance or be sensitive to it without being diagnosed with celiac disease, so the actual relationship of health problems potentially associated with gluten may be considerably higher. First and second-degree relatives have more of a risk of developing celiac disease than are more distant relatives. For instance, their research found that celiac disease can occur in about 1 in 22 among children and their parents or siblings. But in analyzing the child's relationship to aunts, uncles, nephews, nieces, cousins, grandparents, half-siblings who may have celiac, the number decreases to 1 in 39. Detailed results of their research can be found from the NFCA's Seriously, Celiac Disease campaign.
    In our family, Chris never knew he was predisposed to celiac disease until he hit his twenties. Celiac is sneaky—while it can occur within people at any age, sometimes it doesn't show up until people get a bit older. As a child, he grew up on sandwiches, cookies, macaroni and cheese, and Grandma's home-made bread. When he had a tummy upset, as good mom I'd bring him chicken noodle soup and saltines. I never knew about celiac disease. My family came from a long line of gluten aficionados. As he hit adolescence and his teen years, signs of gluten intolerance emerged, only we didn't know that's what they were. Few parents link together migraines, skin problems with belly upsets and food "allergies." Chris's doctor dismissed his symptoms as independent, routine growing-up conditions without putting all the pieces of the puzzle together to realize that they were actually all a part of a larger celiac syndrome. It was only when he took a road trip and visited his father's sister and his cousins that he learned about the family's predisposition to celiac. His grandma always had stomach problems, I recall. She lived at a time and place where regular folks living in small towns were simply unaware of conditions such as celiac. As the old saw goes, you can't know what you don't know. In hindsight, she clearly had gluten issues. The gene seems to have been latent in her children, but passed on to take more active forms into the next generation of Chris and his cousin. It's confusing, because one child in the family can have a severe case of celiac while a full-blood sibling may have no sign of it at all! If he hadn't taken that road trip and stopped to visit his aunt, he may never have known that he had celiac. Upon that realization, suddenly everything made sense. All of his erratic symptoms were actually a picture-perfect portrayal of someone with celiac disease!
    We learned a bit about the disease, went to the store looking for gluten-free foods and quickly began modifying his diet. Since his MD couldn't figure out what was making him feel so bad, and if cutting out gluten could make him feel better, we decided that was a course worth pursuing. He felt better immediately. He has never been officially tested for celiac disease, although that would probably have been a better course of action. At that point in time, we simply didn't know about the testing options.
    Testing options have improved significantly over the last decade. The diagnosis of celiac disease can be done with a biopsy of the small intestine mucosa. Blood or serological tests are also helpful but less definitive. The University of Chicago Celiac Disease Center finds that the serum anti-tissue transglutaminase (tTG-IgA) is a widely used antibody blood test for screening for celiac disease, as is a total serum IgA test. The total serum test bolsters the reliability of the tTG test. A newer version of an old anti-gliadin antibody test has been developed called DPG or deamidated gliadin peptides test. Tissue transglutaminase (TTG) measures, endomysial antibody (IgA antibody to endomysium EMA) are recommended by many experts, while formerly used antigliadin antibody tests (AGA) are not as widely used.
    About 95% of people with celiac disease have the HLA-DQ2 gene and most of the remaining 5% have the HLA-DQ8 gene. Genetic testing can determine if someone has one or both of these genes. If someone has the gene it means they are at risk of developing celiac disease, but it does not mean that you necessarily have it. A positive genetic test should be followed up with a celiac blood panel to determine if someone has celiac disease. Celiac disease experts recommend family member testing as a proactive approach to diagnosis and then follow up with tests every 2-3 years or if potential symptoms start to emerge. They note that it is possible for someone to initially have a negative test result, but then test positive years later. This is worthwhile to know when trying to figure out if a child has celiac disease or not. It also means that re-testing may be a necessary process, since both the child's body and the disease propensity may change over time.
    What are warning signs that a child may have celiac disease? According to the North American Society of Pediatric Gastroenterology, Hepatology and Nutrition and other celiac experts, there are both gastrointestinal and other symptoms to look for—symptoms that one may not logically associate with gluten. But remember that many of these symptoms may exist independently in children and have no relationship to having celiac disease at all! This is what makes trying to figure out whether or not a child has it extremely challenging.
    Once a determination is made that a child has celiac disease or is highly predisposed to be gluten intolerant or sensitive, changing the child's exposure to gluten in foods becomes of utmost importance. The problem is, most people aren't aware of gluten issues in general, and they particularly aren't thinking of it occurring in children. As Kay Chick (2014) describes in her article, there are many things that parents and teachers can do to proactively prevent problems in routine situations. She points out that many school cafeterias aren't equipped to safely serve children who have to go gluten-free. Most parents don't realize that making accommodations for children with celiac disease are assured under Section 504 of the Rehabilitation Act of 1973 and the Individuals with Disabilities Education Act; seventy-four percent of parents who participated in her study reported their children did not have a 504 plan or written into an Individualized Education Program (IEP) to help everyone make accommodations for their celiac disease. Children with celiac may also be eligible for services under the Individuals Disabilities Education Act (IDEA) if it has an impact on their ability to learn.
    Social events like birthday parties, camps, and field trips may expose children to gluten in foods and provide no alternatives for those who can't eat them. Sharing food is a common childhood occurrence, but an experience that leaves celiac kids out unless they are sure the food is safe. Going to another child's house to play or for a sleep-over may be an extra-big deal for a celiac kid. When the team goes out for a pizza party or ice cream cones after a game, the child with celiac has to be extremely careful. It helps enormously when adults and people in supervisory roles understand that when children need to avoid gluten, it is not because it is a choice—it is a health necessity. While a public awareness campaign to help people understand that there are children (and adults) who have to avoid gluten is underway, there's still a long way to go. Children need to learn self-advocacy skills to keep themselves healthy. This is sometimes hard to do when interacting with parents, teachers, and other adults who think that they understand the complications associated with needing to be gluten-free—and they actually don't.
    Going gluten-free doesn't have to be hard, but when it comes to children and youth, often it is. From identifying that celiac disease could be a problem, to diagnosing it, to addressing it in one's daily lifestyle, children are a special interest population. In order to help celiac children to live long and healthy lives, it begins with educating adults, most of whom will never have to personally go gluten-free. Speaking out on behalf of a celiac kid is an important thing to do. Adults in all professions need to learn what celiac is and how to institute celiac-safe strategies into their organizations. Even if they aren't affected, adults need to realize how their decisions and behavior may adversely impact children.
    Our youngest citizens count on adults to always be looking out for their best interests. Speak with your local schools, recreation groups, and youth-oriented civic organizations to make sure the leaders understand that the chances are high that they are serving children with celiac disease. Help them to understand that they should learn more about what it is, that they should make sure eating arrangements always take into consideration children with special dietary needs, and have food alternatives readily available. Every parent would expect the same concern and attentive care if their child had celiac. And as a community, aren't all children "our" children?
    For more information, see our book, Going Gluten Free (Norlights Press 2015). Yvonne Vissing has been appointed by the United Nations to be a Policy Chair for Child Rights, under the UN Convention on the Rights of the Child.
    Resources:
    Chick, Kay. The Educational, Social, and Family Challenges of Children with Celiac Disease: What Parents Should Know. 3/19/2014. Celiac.com Children's Digestive Health and Nutrition Foundation (CDHNF). www.cdhnf.org Diagnosis and Treatment of Celiac Disease in Children. Journal of Pediatric Gastroenterology and Nutrition. 2005; Volume 40, Number 1 (Jan): 1-19. National Foundation for Celiac Awareness. http://www.celiaccentral.org/ North American Society of Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) http://www.naspghan.org//files/documents/pdfs/medical-resources/celiac/CeliacGuidelineSummary.pdf Raising Our Celiac Kids (ROCK). https://www.celiac.com/articles/563/1/ROCK-Raising-Our- celiac-Kids---National- celiac-Disease-Support-Group/Page1.html University of Maryland School of Medicine Center for Celiac Research http://glutendude.com/celiac/celiac-disease-symptoms/

    Dr. Rodney Ford M.D.
    Celiac.com 07/15/2016 - This week I have noticed many blogs/articles claiming that the only illness that can be caused by gluten is celiac disease. Yes, they state that celiac disease alone needs a gluten-free diet. I totally disagree with this distorted out-of-date viewpoint. There are tens of millions of non-celiac people who testify that gluten causes them significant harm. It is my suspicion that the wheat lobby is cranking up these anti-gluten-free messages as a way of stopping wheat sales from slumping. Why else promote such a barrage of misinformation?
    As if to counter such negative press, I got this email last week:
    "Dear Dr Ford, since we had our appointment I have taken George off gluten and have noticed a huge difference in his behaviour. George is now a much more sociable and loveable little boy. He has manners, he shares and he will say sorry if he has done something wrong. Obviously he is still a 4 year old boy so I have to expect some behaviour issues and sibling rivalry. Thank you so much for giving me my little boy back." By way of explanation, George was aggressive and having difficulty learning, he was easily distractible and he was always fighting with his sister. His parents saw him as being a naughty boy, however he was displaying severe ADHD behaviours. They wondered if he might need some medication and were exploring psychological help for their family.
    However, as I have seen a lot of behaviour-disturbed children get completely better off gluten. So I tested him for celiac disease (this was negative), I then recommended a strict gluten-free trial for three months. As you have read, his parents say that there has been a dramatic change, and now see him as a "sociable and loveable little boy" – in just a few weeks!
    To me this is clear evidence that gluten can cause significant inflammatory damage to our nerves and brains. George was displaying ADHD behaviours, triggered by gluten. It is a pity that those who are ridiculing the gluten-free diet movement are attempting to deny children like George the knowledge of healing on a gluten free diet.
    Evidence points to the nervous system as the prime site of gluten damage. This theory is attractive because it gives a unifying answer that explains the following conundrums:
    a mechanism of the non-gut symptoms of celiac disease; the behaviour disturbances caused by gluten reactions; the psychiatric and personality disorders provoked by gluten; the multitude of neurological symptoms; the autonomic nervous system disturbances (often seen in people with celiac disease); why such small amounts of gluten can cause such major reactions by the amplification effect of the nervous system (not dependent on any gut damage); why gluten can create such a diverse range of symptoms. Because any agent that causes widespread neurological harm (think of multiple sclerosis and Syphilis) can generate almost any array of symptoms. Nerve and brain damage from gluten can also explain why celiac patients with extensive gut damage can be asymptomatic. The histological gut damage in celiac disease is not mediated through this neurologic system: it is caused by local toxicity to the bowel in susceptible people. If these people are not highly sensitized to gluten, then they may not experience any symptoms mediated through neural networks.
    I got mad and grumpy
    I would also like to tell you about Nick. When he was 8 years old he wrote his story down for me:
    "My name is Nick and I am eight and a half years old. I had a problem when I had gluten, so my mum found Doctor Ford to help me. He helped me get off gluten. When I tasted the first chocolate biscuit it tasted weird but now I'm getting used to it. I had troubles when I was on gluten. Every day I got mad with myself and sometimes with others. I didn't want to be mad. I was grumpy." I had dizzy spells
    I also had dizzy spells every day and I didn't feel well. They thought that I had a heart problem when I was 8. I went to the doctor and to the hospital lots and lots as they were trying to figure out what was wrong with me. I wasn't very well. When I was on gluten I had sore tummies at least twice a week.
    I am off gluten and I have more energy
    Now I am on a gluten-free diet. When I'm off gluten, I still sometimes have dizzy spells – but not usually. You might lose weight when you first start go gluten-free because you are getting used to it.
    At school I found I had to get off gluten, as I couldn't sit still on the mat. I now have got more energy to run. I can sprint now. I can sleep better too. I used to not have enough energy but now I have enough energy to sprint around the cross-country. I've achieved in my spelling now and I'm much better at school. My Doctor Ford is a nice man because he talks nicely. Tons of people need to go and see him.
    Gluten-free helps your attitude
    Please come to our diet because it helps you breath better, it helps your attitude change. It makes you be stronger. Me and my brother used to fight a lot when I was on gluten but we like one another now. I liked gluten foods but I can't have it as it's not good for me.
    In my family we have got a dog and four humans – Jordan, Dad, Mum and me. We are all gluten-free but my dad doesn't have to be gluten-free. It's unfair when my dad eats gluten and it makes me feel hungry.
    The food can be nice
    Our gingerbread bakery bakes us nice food. When I found out I was allowed to have a gluten-free birthday cake I was very happy. We go to Gingerbreads once a week. I buy chocolate chip biscuits they taste delicious. World come and be gluten-free as it makes me delighted! I love people that make yummy gluten-free foods.
    My brother says that being on a gluten-free diet is like being in China with no noodles. He finds it hard and says he just wants to be normal. I say he will get used to it.
    Nick
    Nick's mum adds:
    Prior to going gluten-free Nick had the following list of symptoms:
    Rashes Sore tummy and runny poos Very irritable Very tired – slept more than 12 hours Poor memory and learning hard work Behaviour problems – got very angry with others Bad hay fever and asthma Intolerant to dairy Dizzy spells for 6 months and not feeling well Very fussy eater. The good news is that of today (six months later), he is not having a lot of these symptoms and he is a much nicer person all around. He can now have dairy products again."
    Mum
    The implication of gluten causing neurologic network damage is immense. With estimates that at least one in 10 people are affected by gluten, the health impact in enormous. Understanding the components of the gluten syndrome is important for the health of the global community.
    Written in the spirit of cooperation and knowledge sharing. You can read many more patient stories in my book "Gluten-Related Disorder: Sick? Tired? Grumpy?" http://www.GlutenRelatedDisorder.com 

    Dr. Rodney Ford M.D.
    Celiac.com 10/12/2016 - How early can you diagnose celiac disease? This is a most challenging question for everyone: children, parents, pediatricians, gastroenterologists and many other health professionals. This is because, like so many other diseases, celiac disease is a progressive condition that slowly creeps up on you. In addition, there is disagreement about what constitutes a definitive diagnosis of celiac disease. What if the small bowel biopsy result is at odds to the blood test results?
    It is my opinion that the fundamental diagnostic requirements for celiac disease remain unresolved. This makes early diagnosis problematic!
    Do you keep waiting (whilst suffering from symptoms) for classic gut damage to be visible in a bowel biopsy before adopting a gluten-free diet? Or do you recognize the early onset of celiac disease and go gluten-free prior to this gut damage occurring? Will you be accused of "masking" celiac disease if you are an early gluten-free adopter?
    Currently, most guideline protocols require a definitive diagnosis of celiac disease by demonstrating small bowel tissue damage. This is achieved by performing and upper gastrointestinal endoscopy, taking a tissue biopsy of the mucous lining of the small bowel, and then showing specific tissue damage (villus atrophy) under the microscope: this is the small bowel biopsy procedure.
    However there is significant controversy about the accuracy and necessity of a small bowel biopsy test. We will have a close look at the difficulties and shortcomings of these tests. But first, let's look at these diagnostic problems in relation to Francesca.
    Meet Francesca who is highly at risk of celiac disease
    So how early could we diagnose Francesca's celiac disease? She has just turned 3-years-old. Her mother has celiac disease, diagnosed over 10 years ago. So mum bought Francesca for my opinion because she had started to have some loose bowel motions (runny poops), although sometimes she did have hard bowel motions, which were difficult to pass. She also had a big distended tummy, was getting more cranky, and a bit more tired. Because of mother's celiac disease, Francesca was already consuming a smaller amount of gluten, although she was eating at least one slice of normal wheat gluten bread each day. Her mother's question was: "Has Francesca now developed celiac disease?" This problem confronts me most days in the Clinic.
    How should I investigate and manage her illness?
    What blood tests should I request? How do I interpret her results? Should I organize a small bowel biopsy? Do we look for early evidence of gluten problems, or do we wait for end stage celiac damage? Should she go on a gluten-free diet now? Should we be concerned about "masking" celiac disease? Francesca's blood tests show:
    She does carry the HLA gene DQ2: this makes her a likely candidate for developing celiac disease. The tissue-damage antibodies were normal: the tTG (tissue Trans-Glutaminase) levels were low normal, but the IgG-DGP (Diamidated Gliadin Peptide) levels were borderline (18 units, with a normal range 0-20). Her EMA (Endomesial Antibody) was negative: the borderline DGP is very suspicious and evidence of early celiac disease. IgG-AGA (Anti-Gliadin-Antibody) level was moderately raised: showing that she has developed an immune response to gluten. She has not had an endoscopy: with her tissue damage antibodies at low levels, the likelihood of abnormal tissue histology is very low. My opinion
    In my opinion, this child is at extreme risk of developing celiac disease. I would like to see her on a strict gluten zero. However, it is now up to her parents to decide whether they will wait until she actually develops gut damage, or do something now to prevent her getting a serious disease.
    What would you do if she were your child? Well her parents decided to place her gluten-free and they saw a big change for the better in just a few weeks. Her bowels become normal, her energy levels improved and she is now a happy girl.
    So what is her diagnosis? I call her early celiac disease. Others would say she has non-celiac gluten-sensitivity. Some would claim that I am unwarranted to suggest a gluten-free diet until she has a positive biopsy and they accuse me of "masking" celiac disease by treating her symptoms.
    Why let Francesca unnecessarily suffer whilst waiting for her to get progressively sicker until we can get a tissue diagnosis?
    Written in the spirit of cooperation and knowledge sharing. You can read many more patient stories in my book "Gluten-Related Disorder: Sick? Tired? Grumpy?" (www.GlutenRelatedDisorder.com).

  • Recent Articles

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

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

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

    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