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    An Open Letter to Skeptical Health Care Practitioners

    Dr. Ron Hoggan, Ed.D.

    • Journal of Gluten Sensitivity Winter 2013 Issue

    Image Caption: Image: CC--jonny goldstein

    Celiac.com 06/30/2017 - Dear attending physician:

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    If you are reading this it is because your patient either expects you to refuse or you have refused to test them for celiac disease. You may believe, in keeping with prior training, that this patient does not display the signs or symptoms associated with celiac disease. However, the symptom complex of celiac disease has recently undergone dramatic changes, beginning with the understanding that celiac disease is a systemic, rather than an intestinal ailment. World renowned researchers have weighed in on this issue, with peer reviewed reports that repeatedly establish the protean manifestations of celiac disease. They defy prior algorithms for symptom assessment toward diagnosing celiac disease. In the past, undiagnosed celiac patients were often identified as asymptomatic because their symptoms were simply not diarrhea, abdominal bloating, and muscle wasting. However, the Celiac Disease Center at the University of Chicago lists more than 300 presenting symptoms of celiac disease (1). The same group also offers a list of symptoms that demonstrate the wide range of apparently unrelated symptoms that can indicate celiac disease, only the first two of which represent these classical symptoms (2).

    • Recurring abdominal bloating and pain
    • Chronic or recurrent diarrhea
    • Constipation
    • Nausea or emesis
    • Liver and biliary tract disorders (increased serum transaminases, primary sclerosing cholangitis)
    • Weight loss
    • Pale, foul-smelling stool
    • Iron-deficiency anemia unresponsive to iron therapy
    • Fatigue
    • Failure to thrive or short stature
    • Delayed puberty
    • Arthralgia
    • Tingling numbness in the legs
    • Pale sores inside the mouth
    • Dermatitis herpetiformis
    • Abnormal dentition (tooth discoloration, loss of enamel)
    • Unexplained infertility or recurrent miscarriage
    • Osteopenia or osteoporosis
    • Peripheral neuropathy
    • Psychiatric disorders (anxiety or depression)

    Please remember that any one or more of the above symptoms and/or ailments may indicate untreated celiac disease, so testing for celiac disease is an important, inexpensive step toward assisting a patient to resolve these troubling, sometimes debilitating, symptoms.

    Overweight and obesity may also indicate underlying celiac disease. Today's affluence and accompanying food surpluses permit people who are not absorbing nutrients efficiently to eat enough to more than compensate for otherwise calorically deficient diets. Thus, only a minority of celiac disease cases present with classical symptoms in most of the first world. In fact, some reports indicate that overweight patients with celiac disease are as common as those who are underweight ( 3, 4, 5). This is why researchers have long employed the iceberg metaphor to describe the mass of people with celiac disease. The vast majority these people with celiac disease remain undiagnosed (6). Until sensitive and specific serological screening tools became available, very few cases were diagnosed and celiac disease was erroneously considered rare.

    In addition to alleviating quite a lot of human suffering, early detection offers some rather large economies for the health care system, as many of the more serious ailments that often befall those with untreated celiac disease may be averted through these inexpensive serological tests and subsequent prescription of a strict gluten free diet.

    Prior to the therapeutic use of a gluten free diet, mortality was reported at 36% among 73 children with celiac disease (7). Admittedly, it is likely that these were the more serious cases and perhaps some cases of misdiagnosis. However, even as recently as 1989, adult celiac patients experienced almost double the early mortality rate seen in the general population (8), so an early diagnosis and treatment of celiac disease is not just helpful in mitigating current symptoms, it is a powerful form of preventive medicine that is coincidental to the appropriate diagnosis and treatment of celiac disease.

    Let me expand on that last comment a little further. Chronic depression (9), ADHD (10), neurological (11) and neuromuscular disorders(12) treatment-resistant iron deficiency (13, 14), impaired lung function (15, 16) a variety of lymphomas including B cell and T cell (17, 18, 19) and adenocarcinomas (20, 21) dental enamel defects (22, 23) autoimmune thyroid disease (24, 25 ) autoimmunity in general (26) type 1 diabetes (27, 28) kidney disease (29) liver disease (30, 31) skin disease (32, 33) seizure disorders (34) gait disorders (35) obesity (36) fatigue (37) anxiety (38) infertility (39) osteoporosis (40) learning disorders (41, 42) aphasia (43) and many more such sequels to untreated celiac disease (44) impose an enormous economic burden on our health system and education system. This burden weighs on most levels of government, private insurance companies, families, and individuals. Much of this unnecessary cost is ultimately passed along to taxpayers and/or are incorporated into insurance premiums. We all pay.

    And the human costs are even greater. Attention deficits and learning disabilities impose life-long inhibitions on success and are corrosive to self esteem. Depression robs us of individual, economic and social achievements, as well as denying us the day-to-day pleasures of life. Similarly, anxiety and infertility are socially isolating and heartbreaking, each in their own ways. Neurological and seizure disorders, including gait disorders, can inhibit our mobility and/or our safe function in this increasingly complex and fast-paced society. Impaired lung function can prohibit or interfere with normal, desirable activities ranging from pleasant walks, sports, and even having sex. Lymphomas and adenocarcinomas can have rapidly fatal consequences. The individual and familial consequences are often devastating. Type 1 diabetes tethers us to insulin injections and requires that we maintain a careful balance between carbohydrate intake and insulin injections. The challenges of this diet dwarfs the inconvenience of a gluten free diet, and a late celiac diagnosis may require that some people comply with both sets of dietary constraints. Skin disease can also exact an enormous social toll, and this is ignores the discomfort and embarrassment of constant itching and scratching, as well as the pain associated with the most common skin diseases connected to celiac disease. Similarly, obesity is not only socially excluding, it poses its own sets of health hazards and life shortening penalties. As osteoporosis becomes more and more common, we can see that society's increasing nutritional dependence on gluten grains may well have set the stage for this degenerative condition, often requiring painful and expensive joint replacement surgeries as our bones gradually crumble and shrink. The dramatic loss of our ability to produce intelligible speech, called aphasia, is by no means the least of this list. The horrific nightmare of being unable to speak to others and have them understand us has been the lived experience of at least one individual. His speech slowly returned after his celiac diagnosis and some time on a gluten free diet. Too many of us are not so lucky.

    Many of us see ourselves, and our symptoms, in the many posts, blog comments, listservs and websites that discuss celiac disease. Yet outdated medial training can create barriers to patients seeking testing. However, given the above, peer reviewed data and expert opinions, it is difficult to imagine any reasonable argument for refusing to test a patient who requests serological testing for celiac disease. The cost is minimal and the potential benefits to those who are diagnosed, and our society, are enormous.

    Current data suggest a prevalence of celiac disease in the general population at somewhere around 1%, based on serological testing for selective antibodies. However, newly emerging data suggest that a portion of the population that is at least six or seven times the size of the group with celiac disease mounts an innate immune response to gluten grains. The careful characterization of one pathway for activating intestinal inflammation by non-gluten components of these grains, leaves open the possibility of "gliadin-dependent signaling pathways that still remain to be characterized" (45).

    Other forms of non-celiac gluten sensitivity, as signaled by IgG class antibodies against gliadin, are seen in 10% to 12% of the general population. Whether these segments of the population with non-celiac gluten sensitivity overlap or are distinct has yet to be determined, so it remains unclear whether they form 10% of our population, or as much as 19% of our culture. Finally, based on a new book by the world renowned pediatric gastroenterologist and allergist, Dr. Rodney Ford, titled Gluten: Zero Global, there is considerable evidence to suggest that, with their many other anti-nutrient, addictive, allergenic, and blood-glucose altering features, gluten grains are a questionable macronutrient food source for humans (46).

    Thus, testing for non-celiac gluten sensitivity, may offer many of the benefits that testing for celiac disease offers. Your patient and I are asking that you heed the above data from your professional literature and the first dictum of your profession, by 'first doing no harm', and ordering testing for celiac disease and non-celiac gluten sensitivity.

    Dr. Ron Hoggan, Ed. D.

    1. http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf
    2. http://www.cureceliacdisease.org/medical-professionals/guide/symptoms
    3. Dickey W, Kearney N. Overweight in celiac disease: prevalence, clinical characteristics, and effect of a gluten-free diet. Am J Gastroenterol. 2006 Oct;101(10):2356-9
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    5. Cheng J, Brar PS, Lee AR, Green PH. Body mass index in celiac disease: beneficial effect of a gluten-free diet. J Clin Gastroenterol. 2010 Apr;44(4):267-71.
    6. Katz KD, Rashtak S, Lahr BD, Melton LJ 3rd, Krause PK, Maggi K, Talley NJ, Murray JA. Screening for celiac disease in a North American population: sequential serology and gastrointestinal symptoms. Am J Gastroenterol. 2011 Jul;106(7):1333-9. doi: 10.1038/ajg.2011.21. Epub 2011 Mar 1.
    7. Hardwick C. 1989, as described in Holmes GKT. Non-malignant complications of coeliac disease. Acta Paediatr Suppl. 412: 68-75. 1996.
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    10. ADHD (10),Niederhofer H. Association of attention-deficit/hyperactivity disorder and celiac disease: a brief report. Prim Care Companion CNS Disord. 2011;13(3).
    11. neurological and neuromuscular disorders (11, 12,) Currie S, Hadjivassiliou M, Clark MJ, Sanders DS,
    12. Wilkinson ID, Griffiths PD, Hoggard N. Should we be 'nervous' about coeliac disease? Brain abnormalities in patients with coeliac disease referred for neurological opinion. J Neurol Neurosurg Psychiatry. 2012 Dec;83(12):1216-1221.
    13. Hadjivassiliou M, Chattopadhyay AK, Davies-Jones GA, Gibson A, Grünewald RA, Lobo AJ. Neuromuscular disorder as a presenting feature of coeliac disease. J Neurol Neurosurg Psychiatry. 1997 Dec;63(6):770-5.
    14. Fayed SB, Aref MI, Fathy HM, Abd El Dayem SM, Emara NA, Maklof A, Shafik A.
    Prevalence of celiac disease, Helicobacter pylori and gastroesophageal reflux in patients with refractory iron deficiency anemia. J Trop Pediatr. 2008 Feb;54(1):43-53.
    15. Cekın AH, Cekın Y, Sezer C. Celiac disease prevalence in patients with iron deficiency anemia. Turk J Gastroenterol. 2012 Oct;23(5):490-5.
    16. Robertson DA, Taylor N, Sidhu H, Britten A, Smith CL, Holdstock G. Pulmonary permeability in coeliac disease and inflammatory bowel disease. Digestion. 1989;42(2):98-103.
    17. Edwards C, Williams A, Asquith P. Bronchopulmonary disease in coeliac patients. J Clin Pathol. 1985 Apr;38(4):361-7.
    18. Bautista-Quach MA, Ake celiac disease, Chen M, Wang J. Gastrointestinal lymphomas: Morphology, immunophenotype and molecular features. J Gastrointest Oncol. 2012 Sep;3(3):209-25.
    19. Leslie LA, Lebwohl B, Neugut AI, Gregory Mears J, Bhagat G, Green PH. Incidence of lymphoproliferative disorders in patients with celiac disease. Am J Hematol. 2012 Aug;87(8):754-9.
    20. Elfström P, Granath F, Ekström Smedby K, Montgomery SM, Askling J, Ekbom A, Ludvigsson JF. Risk of lymphoproliferative malignancy in relation to small intestinal histopathology among patients with celiac disease. J Natl Cancer Inst.2011 Mar 2;103(5):436-44.
    21. Benhammane H, El M'rabet FZ, Idrissi Serhouchni K, El Yousfi M, Charif I, Toughray I, Mellas N, Riffi Amarti A, Maazaz K, Ibrahimi SA, El Mesbahi O. Small bowel adenocarcinoma complicating coeliac disease: a report of three cases and the literature review. Case Rep Oncol Med. 2012;2012:935183.
    22. Vecchio R, Marchese S, Gangemi P, Alongi G, Ferla F, Spataro C, Intagliata E. Laparoscopic treatment of mucinous adenocarcinoma of jejunum associated with celiac disease. Case report. G Chir. 2012 Apr;33(4):126-8.
    23. El-Hodhod MA, El-Agouza IA, Abdel-Al H, Kabil NS, Bayomi KA. Screening for celiac disease in children with dental enamel defects. ISRN Pediatr. 2012;2012:763783.
    24. Erriu M, Sanna S, Nucaro A, Orrù G, Garau V, Montaldo C. HLA-DQB1 Haplotypes and their Relation to Oral Signs Linked to Celiac Disease Diagnosis. Open Dent J. 2011;5:174-8.
    25. Cats EA, Bertens AS, Veldink JH, van den Berg LH, van der Pol WL. Associated autoimmune diseases in patients with multifocal motor neuropathy and their family members. J Neurol. 2012 Jun;259(6):1137-41.
    26. Bardella MT, Elli L, De Matteis S, Floriani I, Torri V, Piodi L. Autoimmune disorders in patients affected by celiac sprue and inflammatory bowel disease. Ann Med. 2009;41(2):139-43
    27. Nass FR, Kotze LM, Nisihara RM, de Messias-Reason IT, Utiyama SR. Autoantibodies in relatives of celiac disease patients: a follow-up of 6-10 years. Arq Gastroenterol. 2012 Jul-Sep;49(3):199-203.
    28. Saadah OI, Al-Agha AE, Al Nahdi HM, Bokhary RY, Bin Talib YY, Al-Mughales JA, Al Bokhari SM. Prevalence of celiac disease in children with type 1 diabetes mellitus screened by anti-tissue transglutaminase antibody from Western Saudi Arabia. Saudi Med J. 2012 May;33(5):541-6.
    29. Van den Driessche A, Eenkhoorn V, Van Gaal L, De Block C. Type 1 diabetes and autoimmune polyglandular syndrome: a clinical review. Neth J Med. 2009 Dec;67(11):376-87.
    30. Welander A, Prütz KG, Fored M, Ludvigsson JF. Increased risk of end-stage renal disease in individuals with coeliac disease. Gut. 2012 Jan;61(1):64-8.
    31. Drastich P, Honsová E, Lodererová A, Jarešová M, Pekáriková A, Hoffmanová I, TuÄková L, Tlaskalová-Hogenová H, SpiÄák J, Sánchez D. Celiac disease markers in patients with liver diseases: A single center large scale screening study. World J Gastroenterol. 2012 Nov 21;18(43):6255-62.
    32. Massironi S, Rossi RE, Fraquelli M, Bardella MT, Elli L, Maggioni M, Della Valle S, Spampatti MP, Colombo M, Conte D. Transient elastography in patients with celiac disease: a noninvasive method to detect liver involvement associated with celiac disease. Scand J Gastroenterol. 2012 Jun;47(6):640-8
    33. Caproni M, Bonciolini V, D'Errico A, Antiga E, Fabbri P. Celiac disease and dermatologic manifestations: many skin clue to unfold gluten-sensitive enteropathy. Gastroenterol Res Pract. 2012;2012:952753.
    34. Criado PR, Criado RF, Aoki V, Belda W Jr, Halpern I, Landman G, Vasconcellos C. Dermatitis herpetiformis: relevance of the physical examination to diagnosis suspicion. Can Fam Physician. 2012 Aug;58(8):843-7.
    35. Maniar VP, Yadav SS, Gokhale YA. Intractable seizures and metabolic bone disease secondary to celiac disease. J Assoc Physicians India. 2010 Aug;58:512-5.
    36. Hadjivassiliou M, Grünewald R, Sharrack B, Sanders D, Lobo A, Williamson C, Woodroofe N, Wood N, Davies-Jones A. Gluten ataxia in perspective: epidemiology, genetic susceptibility and clinical characteristics. Brain. 2003 Mar;126(Pt3):685-91.
    37. Balamtekin N, Demir H, Baysoy G, Uslu N, Yüce A. Obesity in adolescents with celiac disease: two adolescents and two different presentations. Turk J Pediatr. 2011 May-Jun;53(3):314-6.
    38. Greenfield JR, Samaras K. Evaluation of pituitary function in the fatigued patient: a review of 59 cases. Eur J Endocrinol. 2006 Jan;154(1):147-57
    39. Smith DF, Gerdes LU. Meta-analysis on anxiety and depression in adult celiac disease. Acta Psychiatr Scand. 2012 Mar;125(3):189-93.
    40. Choi JM, Lebwohl B, Wang J, Lee SK, Murray JA, Sauer MV, Green PH. Increased prevalence of celiac disease in patients with unexplained infertility in the United States. J Reprod Med. 2011 May-Jun;56(5-6):199-203.
    41. Rastogi A, Bhadada SK, Bhansali A, Kochhar R, Santosh R. Celiac disease: A missed cause of metabolic bone disease. Indian J Endocrinol Metab. 2012 Sep;16(5):780-5
    42. Knivsberg AM. Urine patterns, peptide levels and IgA/IgG antibodies to food proteins in children with dyslexia. Pediatr Rehabil. 1997 Jan-Mar;1(1):25-33.
    43. Zelnik N, Pacht A, Obeid R, Lerner A. Range of neurologic disorders in patients with celiac disease. Pediatrics. 2004 Jun;113(6):1672-6.
    44. Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48.
    45. Norström F, Sandström O, Lindholm L, Ivarsson A. A gluten-free diet effectively reduces symptoms and health care consumption in a Swedish celiac disease population. BMC Gastroenterol. 2012 Sep 17;12:125
    46. Junker Y, Zeissig S, Kim SJ, Barisani D, Wieser H, Leffler DA, Zevallos V, Libermann TA, Dillon S, Freitag TL, Kelly CP, Schuppan D. Wheat amylase trypsin inhibitors drive intestinal inflammation via activation of toll-like receptor 4. J Exp Med. 2012 Dec 17;209(13):2395-408
    47. Ford R. Gluten: Zero Global. YfoodX Ltd. Christchurch, New Zealand. 2012.


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    Guest Michael Porembski


    I am a retired neonatologist/pediatrician with enough imagination to consider the diagnosis of celiac disease in a patient with any of the problems mentioned in the article. Unfortunately I know many physicians who lack the necessary knowledge and imagination to provide appropriate medical care to patients who have troubling problems. Many years ago it occurred to me that the term "classical" really meant "so easy even a doctor could make the diagnosis." How about considering a diagnosis when it's appropriate to do so....before it gets "classical."

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    Guest Gillian


    Exceptionally well written, I wish I had had this letter years ago, I had a lot of these symptoms but wasn't diagnosed till I was over 60!

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    That was a great article! Although I've been diagnosed with celiac disease for many years, a few years ago I started going to a new young GP (just a little older then my daughter) - and although a highly respected Mayo Clinic Endocrinologist had made my celiac diagnosis (without a intestinal biopsy) she reluctantly accepted it - because you guessed it, I don't have the classic diarrhea and tummy ache. So I've generally accepted that I have to be my own doctor, the majority of docs in the industry WILL NOT accept celiac, although I specifically went to this lady because she claimed she knew about celiac. I don't know what's up with that but it is damn frustrating. She's an okay lady and I like her – perhaps it's my place to be her teacher.

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    Guest AWOL cast iron stomach


    Thanks for giving us a voice especially those of us who drop out of care because we are missed, dismissed, minimized, or just plain unfortunate. May it be the change a long time coming for those in need and enlighten medical professionals of every field/specialty of what to look for. Better yet perhaps a quick test from a primary care would quickly and efficiently get the patient on the right path.

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  • About Me

    As co-author of "Dangerous Grains" and "Cereal Killers", the study of the impact of gluten continues to be a driving passion in my life. I am fascinated by the way that gluten induces illness and impedes learning while it alters mood, behavior, and a host of other facets of our existence. Sure, the impact of gluten on health is an important issue, but that is only the most obvious area of impact. Mood disturbances, learning disabilities, and the loss of quality of life due to psychiatric and neurological illness are even more tragic than the plethora of physical ailments that are caused or worsened by gluten. The further I go down this rabbit hole, the more I realize that grains are a good food for ruminants - not people. I am a retired school teacher. Over the last decade, I have done some college and university level teaching, but the bulk of my teaching career was spent working with high school students. My Web page is: www.DangerousGrains.com

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    Scott Adams
    Celiac disease is an autoimmune condition that affects around 1.4% of the population (91.2 million people worldwide, and 3.9 million in the U.S.A.). 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. 
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    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.
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    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? 
    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.
    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.

    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.

    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.
    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.

    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:
    Global Prevalence of Celiac Disease: Systematic Review and Meta-analysis. Clinical Gastroenterology and Hepatology 2018;16:823–836 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

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

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

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

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

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

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

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

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

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

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

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

    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.

    Dr. Rodney Ford M.D.
    Celiac.com 04/08/2017 - "Do not fear to be eccentric in opinion, for every opinion now accepted was once eccentric" – Bertrand Russell.
    I would like to introduce the term "zero" when we talk about eliminating gluten. Precise language leads to precise action. Zero means none, not some.
    Yes, my recommendation is to change the gluten-language that we have been using. The meaning of the phrase 'gluten-free' has been diluted, so it almost has the connotation of 'not-much-gluten'. It suggests that 'a-little-gluten-does-not-matter' or 'you-are-free-to-give-up-gluten-if-you-want-to'.
    A much stronger expression is needed. I am changing the term 'gluten-free diet' to 'gluten-zero-diet'. This should change how people think about gluten.
    I am a paediatrician, so I see lots of sick children, and many of them are gluten-affected. Happily, they get better much more quickly, after going off gluten, than gluten-affected adults.
    I am a strong believer in putting these children on a gluten-free diet well before they end up with substantial gluten-related harm, and to spare them from years or even decades of gluten- induced symptoms. This means making an early diagnosis. It also means putting them on a gluten-zero-diet before they get the severe gut damage of celiac disease.
    The big question for the children, their parents, and me is "how gluten-free does he need to be?" and "for how long does he have to be gluten-free?" If you read my early books, I talk about eating gluten to tolerance. But I have completely changed my mind about that. My stance now is firmly zero-gluten.
    This might seem a radical position to take in the face of the FDA and other groups talking about 20 ppm as the okay level of gluten contamination. So, how can I justify my gluten-zero-diet opinion? I'll explain a little background information first.
    Do I have to go gluten-free?
    I am often asked if a gluten-free diet is the only way to manage celiac disease. Many of my families are initially resistant to the idea. This is no surprise because gluten-foods are all they know about. Actually, all they know about gluten is that they are just living like everyone else, mostly on wheat-derived foods. They have a food habit. They do not think much about what they are eating. They just eat what is cheap and convenient - that means wheat.
    But the simplistic answer to this question is "Yes! a zero-gluten diet is the answer." However, this is a complex question. So to broaden the question I have included all gluten-related disorders. I repeat, "Yes! A gluten-free diet is the central management strategy for celiac disease and gluten-related disorders."
    But what does a 'gluten-free diet' mean? How free-of-gluten do you have to be? To me, a gluten-free diet means zero-gluten for life – with no exemptions. Certainly there are many who suggest that people can eat gluten to tolerance. (I used to say this as well.) But now I strongly disagree. Any gluten has the potential to cause you harm.
    Get your gluten antibodies down
    Going on a gluten-free diet is more than just the eradication of gluten from your diet. Surprisingly, it is also about reducing the gluten antibodies that your immune system is churning out. Gluten can harm you in more ways than by a direct, or an immune effect, in your gut. Did you know that gluten can also cause you harm through the gluten antibodies that your body produces? (See the chapter on neurological harm.)
    There is growing evidence that the gluten antibodies (AGA – anti-gluten-antibody) are damaging to us, particularly to our neurological system. The research work done by Hadjivassiliou (2012) needs to be heeded.
    Think about why you get vaccinated. Vaccination is to keep you protected from bacteria and virus throughout your life. For this purpose, once you have stimulated antibody production by your immune system, whenever your body comes in contact with the identical stimulant again, your immune system begins to produce much more of this same antibody again.
    Most people get vaccinated against illnesses. For instance, most people have had their tetanus shot. This comprises a tiny amount of tetanus protein (the allergen), which stimulates your body to produce antibodies against the tetanus bacteria. This then protects you from tetanus infection for years to come. The vaccine is intended to stimulate your body to produce the anti-tetanus-antibodies, lifelong. To ensure this happens you will need to get a couple of booster shots during your lifetime.
    This also happens in gluten sensitization. So when you think about gluten, and the antibodies against gluten that your body is continually making, you can now understand that every time you eat gluten, by error or design, this will stimulate more gluten antibody production. And that is a very bad thing for you.
    It is crucial to reduce gluten antibody levels. Even a tiny amount of gluten is enough to stimulate ongoing antibody production, which is potentially harmful for your nerves and brain. The goal should be to get and keep your gluten antibodies down.
    Antibody reduction rather than just the elimination of gluten
    Hadjivassiliou, in his 1998, paper says, "These results strengthen our contention that eliminating these antibodies through strict adherence to a gluten-free diet may have important therapeutic implications for patients with gluten ataxia." Here the focus is on antibody reduction rather than just the elimination of gluten. Surely there is a strong case for investigating for gluten-sensitivity in all people with the likelihood of gluten-related disorders.
    Is 20 ppm really okay?
    Does a gluten-zero-diet literally mean no-gluten-at-all? Definitely, "Yes!"
    But the question everyone is asking is, "what does a gluten-zero-diet mean in terms of every-day practicality?"
    There is ongoing debate about how many parts per million (ppm) of gluten is acceptable in food. Pragmatically, because it is so difficult to get rid of cross-contamination in food production and processing, the number of 20 ppm is now surfacing as a 'reasonable' level of gluten to be consumed (some countries have 200 ppm, and the FDA is recommending 20 ppm). When you first hear about this number, it seems to be a negligible amount. However, there are still concerns for some people who seem to be exquisitely sensitive to gluten.
    For me, a gluten-zero-diet means 'no-gluten-at-all'. This can be achieved if you eat fresh fruits and vegetables, unprocessed meat and fish, uncontaminated rice, corn and other alternate grains, eggs, nuts and unprocessed dairy foods. This means no packet or processed foods – I have called this the no-packet-food-diet.
    Gluten-free is more than removing gluten
    It is a lot more than 'just' going gluten-free. Yes, there are many more things to do when healing someone with celiac disease/ gluten-related disorders. The longer you have had gluten-symptoms, the worse your body will be. More healing will be required. You may need additional minerals, vitamins and probiotics. There are many routine health checks to take. You should also ensure that your gut has healed (via blood test and, maybe, a repeat endoscopy).
    Advocating ZERO gluten
    Yes! I am a zero-gluten man. I advocate a gluten-zero-diet. This is based on the concern that tiny amounts of gluten in your food are enough to stimulate your immune system. Even if you are not feeling unwell from this apparently trivial exposure, your body could be getting sick. What seems trivial to you may not be trivial to your highly tuned and sensitized immune system.
    By definition, 'zero gluten' means ZERO! In other words – it is undetectable gluten (say less than 1 ppm – gluten detection is now getting down to these very low levels). Consequently, any food in which gluten can be detected (between 5–20 ppm should not be labeled gluten-free. This is because it is NOT gluten-free. It does contain (an apparently) trivial amount of gluten. These foods that contain 5–20 ppm need to be labelled 'contains gluten at levels 5–20 ppm'. We need to know exactly what is in our food. We need this information to make informed, healthy food choices.
    The main opposition to zero-gluten labeling comes from the food manufacturing and processing industries – not from the gluten-free community. Food companies say it is not practical or economic to make zero-gluten products. They claim that a 20 ppm is a realistic compromise. They say that 20 ppm is close enough.
    But this is not what the gluten-free community want: we demand "no-gluten-at-all". That is zero-gluten. The gluten-contaminated food chain needs to be entirely cleaned up. The zero-gluten market is growing. The gluten-free community does not want any gluten traces in their food.
    Gluten labeling: a two-tier approach
    In New Zealand, "Coeliac New Zealand" runs a gluten-logo program to give "consumers a quick reference point when shopping and faced with uncertainty about the genuine gluten-free status of a product." They have, very sensibly, adopted a two-tier system of certification (http://www.coeliac.org.nz/crossed_grain).
    Products carrying the 'Crossed-Grain-symbol' in addition to the words 'GLUTEN-FREE' adhere to the FSANZ standard of "No detectable gluten".
    Products carrying the Crossed-Grain-symbol without any other words (that is, not displaying the wording 'GLUTEN-FREE') adhere to the international Codex standard for 'gluten-free tested' and they have gluten levels of less than 20 ppm ( which is considered suitable as per the Codex standard for gluten content).
    This two-tier system: undetectable-gluten; and less-that-20-ppm-gluten, is simple. We know just what we are getting. How hard is this? Everyone is satisfied. So why does the FDA just want a single definition?
    If we, the gluten-free consumers, refuse to buy gluten-contaminated products, then food makers will have to change – or some may decide not to chase the gluten-free market.
    Refractory celiacs still gluten contaminated
    Another argument for zero-gluten is that not all celiac sufferers heal on an apparently gluten-free diet. Celiac disease does not heal when you are constantly exposed to gluten.
    Dewar and co-workers investigated 100 patients who had non-responsive celiac disease. They found the following: 45 (45%) of these patients were not adequately adhering to a strict gluten-free diet, of whom 24 (53%) were inadvertently ingesting gluten, and the remaining 21 (47%) admitted non-compliance. http://www.ncbi.nlm.nih.gov/pubmed/22493548.
    I suggest that you look at the "Gluten-Free Certification Organization (GFCO)" website for detailed information on testing for gluten and gluten cross-contamination. http://gfco.org
    The GFCO is a program of The "Gluten Intolerance Group" (GIG). GFCO inspects products specifically for gluten.
    They say "Unless food is grown in your own garden in an airtight bubble, it is impossible to guarantee a 100% pure product."
    Measuring gluten contamination is difficult as there are so many factors to consider. For example: the raw materials and the possibility they were cross-contaminated; the process used in production (such as the movement of raw materials and equipment) that could increase cross contamination; cleaning and packaging processes.
    Also their testing procedures need to be robust but affordable. They have to take into account: what is being tested (raw materials, equipment or finished products); the type of laboratory technology that is appropriate; the appropriate frequency for testing samples.
    Companies rely on "their Good Manufacturing Practices (GMP), Hazard Analysis Critical Control Point (HACCP) programs, and standard operating processes and procedures to determine a corrective action plan."
    Living with cross contamination
    Terri says about cross contamination at school, "We have to be so careful. So we go with home lunches, because food preparation can be an issue. Just one spoon in the wrong dish, and then back again, contaminates everything … and have you ever seen the cloud of flour that emits when you turn on a food mixer? We deal with celiac disease for my girls and for me. It is just not worth the risk of cross contamination. We prepare homemade gluten-free pasta salads, make homemade gluten-free "Lunchables" with far healthier ingredients, homemade minestrone, gluten-free sandwiches, chili, and a thousand other foods. We make gluten-free granola and trail mix for snacks. It gets easier. The best thing you can do is to find some awesome recipes and make sure whoever has celiac disease learns how to cook! My daughters are 7 and 9, and both know how to read labels and search for hidden gluten. They can prepare several easy foods and snacks, and do not feel like they are missing out. It really does get better!"
    How much easier it would be if there was no gluten in the food chain!
    Yes, cross contamination is the big on-going issue that few gluten-outsiders understand. At a recent hotel breakfast, I asked if they offered gluten-free options. She said, "yes, we have gluten-free bread". This was sitting among the ordinary gluten-breads, and shared the same toaster – covered in crumbs. The staff had no understanding of the concept of cross contamination.
    Should the whole family go gluten-free?
    Yes, there is a huge benefit for the entire household when all adopt a gluten-free lifestyle. But there is always resistance due to the cost and the "inconvenience" – and dads who do not want not give up their beer. However, if there is gluten in the house, there will be cross-contamination. Also, it is poor role modelling when the parents eat gluten (a forbidden food for the child) but their child is denied foods that (from their child's perspective) might seem like a punishment or an arbitrary rule. (Children often do not understand the reason they were put onto a gluten-free diet.) Having said that, at least having their child on a gluten-free diet is a great start, and many children seem to manage with low levels of cross-contamination. By the way, the parents can eat gluten outside the house if they are prepared to play gluten-roulette. However, for their own health they should adopt the gluten-zero policy.
    If gluten is in the house, there is cross-contamination.
    A Day in the Life: Living in a Mixed House
    If you want to know how to avoid cross contamination on a day-to day basis, I recommend that you read this article by Al Klapperich (GIG, East Central WI).
    Al says "This document draws upon my knowledge and experience I have acquired since going gluten-free in 2003. I have given you, the reader, a glimpse into how I personally carry out a gluten-free diet in a mixed house. I am not suggesting this is the only way or the best way; it's simply my way. My only intent is to help others that may be struggling with the gluten-free lifestyle. Not only do we have to be concerned about gluten ingredients that make up our food – we also have to be concerned about any gluten that may come into contact with our gluten-free food."
    Do you put gluten on your skin?
    Cosmetics, should they be gluten-free? Nancy asks: "Doctors in the USA state there is no need to avoid gluten-containing cosmetics & topical medications for those with celiac. What is your viewpoint on this?"
    This is a great question. I tell my patients to avoid any gluten on their skin. However, the answer depends upon where your focus is. If your focus is only on gut damage (that is, celiac disease), then the tiny amounts of gluten in these skin products is trivial and not enough to cause intestinal damage.
    But, if your focus is on the person and symptoms, then gluten on the skin often causes itch and irritability. For example, people complain of itchy hair if using a gluten-containing shampoo. Children using play-dough can develop a contact rash and become irritable. Swallowing gluten in lipstick causes some people a sore tummy.
    I recommend gluten-free cosmetics and topical medications.
    Gluten-free food not always healthy
    There is a not-so-subtle message promoted by many food-manufacturers, that gluten-free foods are, as of by right, healthy foods. This is definitely not true. Have you seen all those advertisements for gluten-free cookies and sweet treats? They are empty calories, full of fat and sugar, and lacking micronutrients.
    I was recently sent a message that was advertising the gluten-free benefits of a "Natural alternative healthy energy drink". This was misleading and dishonest. This drink was just a sugar (sucrose) water, with a few added vitamins. It is a terrible product. It cannot even be called a food. It would be much healthier to eat fruit and vegetables than drink this. It would be much better value to buy and eat healthy whole foods and drink water.
    Carrying the label "gluten-free" does not automatically mean that the product is either healthy or good for you. Often it is not. For example, Coca-Cola is both gluten-free and fat-free, however, few health professionals would recommend it.
    Lots of specialized gluten-free products are full of sugar and fat. They might taste great, and they are okay for a treat, but should not be eaten as a regular every-day food.
    When first confronted with the need to go on a gluten-free diet, most people feel overwhelmed. They also want to reject the whole notion of being gluten-free. They might be angry. They feel as though they are giving up a cherished food, and they certainly are. They have been used to eating gluten-foods for their whole lives. Suddenly, they have to start paying attention to what they are eating. This is very difficult. No wonder there is resistance to a gluten-free diet from so many people.
    Is gluten-free food safe to eat for everyone?
    Anna asks me by email: "Hi Dr Ford, I would like to know if people who are not gluten-free should eat gluten-free food? Can you provide any information of this topic please for me as to the pro's and con's of this? Many thanks."
    This is an interesting question, as it insinuates that gluten-free foods could be unhealthy for some people. Except for the gluten-grains of wheat rye and barley, all foods are naturally gluten-free. Gluten free foods are naturally healthy.
    It is only over the last 100 years that wheat has been added to more and more of our foods.
    There is nothing harmful about eating gluten-free foods.
    Can you live without gluten?
    Arthur wrote: "Your article about gluten causing nerve problems has touched a nerve, as you could see from the general round of applause and approval it received. Bravo! I have consulted dozens of doctors over 30 years (in USA and France) but not one had ever suggested gluten could be the culprit for my problems. Now, I wonder if more education is needed in the medical community on this problem. I've been gluten-free for nearly three months now, and all my symptoms have disappeared and I feel great."
    My question is 'Can humans get along without gluten?' and what role does gluten play in nutrition. Thanks. Best wishes, Art."
    Who needs gluten?
    Here is the dilemma. The world still needs gluten grains to feed the population. But this is creating ill health in at least 10% of the population. If so many people are getting ill from the foods that they are eating, then surely it would be better to shift to other food types to improve the health of the population.
    It turns out that gluten is not a necessary protein. The gluten grains are convenient and demanded - but they are not biologically essential. In fact, for perhaps a third of the population, gluten is biologically undesirable. (This is a controversial statement and needs a lot more research to back it up.)
    Are there risks when going gluten-free?
    It is my experience that for most families who go gluten-free, the quality of their diet actually improves. As they no longer rely on the easy-filling cheap breads, they are forced to branch out into vegetables, fruits, meats and other non-gluten grains. This greatly enhances their food variety, which, in turn, improves their health. Gluten is unnecessary for a well-rounded diet.
    Is the gluten habit easy to kick?
    Unfortunately, gluten has an addictive quality because one of its breakdown products has a morphine-like activity. As you know, foods crammed with gluten such as cakes, dumplings, steamed puddings and big hunks of bread are often referred to as "comfort foods". For some, this comfort is derived from this morphine-like sedation of gluten on the brain. Consequently, when gluten is suddenly removed from the diet, some people experience a withdrawal effect.
    This is one of the reasons a gluten-free diet is viewed as a horror story by so many people. Indeed, withdrawal effects from gluten during the first week of a gluten-free diet are not uncommon. Although this usually passes after a week or so, it can be difficult for children during the first few days. It is sensible to gradually go gluten-free over a week or so to avoid this reaction.
    To sum up, yes! You can you live a healthy life without gluten! Absolutely! Overall, your diet without gluten is a much more healthy, wholesome and packed with goodness. This will be good news to people who have embarked on their gluten-free journey.
    High-fat high-sugar. When deprived of gluten, people often feel that they deserve something to replace it. This yearning for some sort of compensation for being on a strict gluten-free diet leads to people over-indulging in these high-fat, high-sugar gluten-free specialty products. Although these foods are gluten-free, they are not disease-free. They have a high glycemic index, and you can eat too much. They are unhealthy. Weight gain, obesity and insulin resistance may catch up to you.
    Many people are also addicted to gluten. Therefore, as they go through the withdrawal phase, the pleasure of eating sweet-food can provide some compensation to them for being denied gluten. Going gluten-free is not an easy thing for most people.
    Gluten-free reluctance
    You would think that being diagnosed with celiac disease would be a big motivation factor to go onto a gluten-zero-diet. But a study in England (2011) found that over 40% of patients with celiac disease were dissatisfied with a gluten-free diet (http://www.jgld.ro/2011/1/6.pdf).
    They said that they were keen to go back onto gluten if they could get some sort of vaccine or pill to change the way their gut processes gluten. They were willing to make unknown changes to their immune system just so that they could go on eating a toxic food.
    To me this shows:
    the massive ignorance of these people about the seriously harmful nature of gluten. the low level of family and community support for these people. Going gluten-free should be easy, healthy and enjoyable. Gluten-free does need assistance initially. the lack of knowledge about the neurological and autoimmune harm caused by gluten. This is a chapter from Dr Rodney Ford's new book "Gluten: ZERO Global" which is available as an ebook at http://www.glutenZEROglobal.com

    Yvonne (Vonnie) Mostat
    Celiac.com 07/22/2017 - In 1978 Virginia Slims' magazine advertising spouted "You've Come A Long Way Baby". Well, in 2011 "WE" celiac/DH people can express those same words when talking about how far we have travelled since I was diagnosed as a brittle celiac/DH person 16 years ago. If the people with peanut allergies can become well known, so can celiac people!
    DID YOU KNOW: That 16 years ago gluten free foods were difficult to find, and upon finding the small frost-bitten white-gummy loaf of bread, which was even more expensive than it is today, one had to scrape it off the roof of your mouth with your tongue and chew!
    I also remember trying to make a gluten free loaf of bread in our bread maker and having it turn out smaller than when it went in. My husband had to get it out of the container with a screw driver! Now we buy a bread mix which is gluten free, good, and when sliced thin tastes like the real thing!
    You are the consumer. You have a right to ask questions. Don't go back to a restaurant or store that has "claimed" to have gluten free food or baking if you have suffered with an outbreak of dermatitis herpetiformis or abdominal pain after eating their food. I find that, with dermatitis herpetiformis, I know within the first 24 hours if I have ingested gluten. I was unaware, as a new celiac, that "Wheat Free" and "Gluten Free" do not mean the same thing. I now watch for the logo on boxes; the picture of wheat with a line crossing it out, meaning there is definitely no gluten in that product.
    I wanted to have my very first '"DID YOU KNOW" Column to be centered around my favorite subject - food! I am hoping that readers will feel free to write to me at the 'Journal of Gluten Sensitivity' and offer your suggestions with regard to products you have come across in your search for "yummy" gluten free foods. I would also welcome hearing about restaurants and chain grocery stores that you want to recommend to fellow celiac people. Networking is the best way to glean information.
    I also appreciate being corrected. When you provide me with information we all benefit. I want to hear from you, care of the magazine, about titles you would like to see covered. I have files on "The FDA'S Labeling Proposal", " current statistics", "cross-contamination" and web sites that won't grab you and suck you under}. I also have files on "dermatitis herpetiformis - helpful information I learned the hard way", " information about connective tissue disease", "dental care", "myths and facts"," current news/current events"," vitamins and minerals for the celiac", "other diseases that can affect the person with celiac disease", and my favorite, "names of gluten free products that taste like the real thing". They are out there. { And I don't get a kick-back" on products I tell you are too good to pass up!}
    DID YOU KNOW? That Domino's Pizza were not the first Pizza Chain to advertise that they have a gluten free pizza crust? As far back as March 12, 2008, according to the Pizza Pizza www.pizzapizza.ca web site, they were the first Canadian pizza chain that advertised that their 50 Greater Toronto area restaurant locations offered a gluten free crust and numerous gluten free toppings as a pilot project. Big problem! As of November 6, 2012 they opened their 13th location in Montreal. Too far away for dine-in, and too far for their take-out service!
    Domino's Pizza's based in Ann Arbor, Michigan, indicated it was the first national delivery chain to provide the choice of gluten free crusts with its pizzas. According to the PMQ Pizza Magazine, Pizza Hut, part of Yum! Brands (YUM) was the largest pizza seller in the U.S., followed by Domino's and Papa John's (PZA) at number three. All told, the magazine says pizza in 2010 was a 35 billion business in the 50 states. BUT, "Did You Know" that Domino's indicate that "Gluten avoiders should be aware that the crust will be prepared in the same kitchen as the regular gluten-containing crusts, so some risk of gluten exposure will remain."
    Even so, the NFCA said it was happy to have Domino's "on board". As of Friday, May 12, 2012 Domino's pizza was still waiting for the U.S. Food and Drug Administration to resolve the issue of safe threshold levels of gluten for food labeling.
    "Happy Joe's Pizza", chain-store pizza restaurants have a small size gluten-free pizza crust that is very good according to my U.S. relatives who are also gluten intolerant.
    The ACDA (American Celiac Disease Alliance) firmly believes that the standard adopted by the FDA must be substantiated by evidence-based research, with limits established through double-blind, randomized trials. Research conducted in 2007 supports setting the gluten-free standard at the proposed level. There are few studies assessing toxicity and safety of gluten exposure and none published thus far which demonstrate safe levels for individuals with celiac disease. [ACDA comments on FDA's labeling proposal.]
    Does this make sense to you? We should be aware if the crust will be prepared in the same kitchen as the regular gluten-containing crusts, so some risk of gluten exposure will remain. This reminds me of ordering a Caesar salad, minus the croutons, in a well-known restaurant chain. After considerable questioning I found out that the waiter just took the croutons out of the Caesar salad! I am extremely sensitive to just a few crumbs of gluten. What is the use of our family buying two toasters to avoid cross-contamination only to have a waiter scoop out the croutons before serving me?
    "Oats serve as a prime example in support of the FDA position in the U.S.A." {ACDA comments on the FDA's labeling proposal}. "Oats does not contain the gliadin protein and should be safe for celiac consumers. However, grain standards for the United States allow a set percentage of foreign grains to be present in packages of single name grains. By definition, then, oats may contain up to 25 percent of wild oats and other grains for which standards have been established under the United States Grain Standards Act. Research has shown, and the FDA acknowledges, that regular oats pose a risk to celiac consumers due to cross-contamination."
    I was blown away when I read on the American Celiac Disease Alliance site that given the manner in which grain crops are rotated in the U.S., it is likely that similar contamination issues will arise with regard to other inherently gluten free grains. In fact, a recent study found that among 22 samples of inherently gluten-free grains, seeds and flour, seven (22%) exceeded the proposed FDA standard of
    Additionally, the FDA itself has found that "qualifying language is confusing to consumers". {You can say that again!} "This approach eliminates the need for consumers to differentiate among products that are inherently gluten-free foods and those which are not. It will also eliminate the use of other statements on products such as 'made with gluten-free ingredients,' which can be misleading. Finally, it will, in our view, simplify the education process for patients and the public at large." (ACDA comments on FDA labeling proposal)
    Cross-Contamination will be attacked in a later column.
    The ACDA implored the FDA to consider the following: "It takes an individual, on average, six years of being ill, of bouncing from doctor to doctor before being properly diagnosed with celiac disease. Gluten-free foods do not undergo years of safety testing before going on the market like medications. Each and every day, celiac consumers are placed at risk when trying to determine if the foods intended to maintain their health are safe. They have only the clarity and accuracy of the labeling on which to rely. It is a heavy burden, but one that will be eased dramatically with the completion of this rule making."
    An excellent web site entitled 'The Celiac Scene, Guides for the Gluten Free' has a seemingly limitless number of chain restaurants throughout Canada and the United States that have a gluten free menu. Some of their gluten free menus are small, but growing. The site even has maps that are updated regularly. You can press on the MAP Icon to find out where to locate the celiac endorsed restaurants and chains throughout North America. I was really happy to find the "Celiac Scene" web site! It is owned, operated and maintained by people with celiac disease themselves. Still, it states: "Consider them a guide, not a guarantee." This seems reasonable given the number of restaurant chains that are listed and the recalls that happen regularly.
    In December 2011 there was a recall of the Metro Grocers' irresistible gluten free Honey-Nut O's cereal and Apple Cinnamon O's cereal because of gluten.
    On a happier note Loblaws and President's choice have produced a new "Recipes to Riches" cookie product. The product labeling indicates that the product is gluten free. To assure this claim, the product has been made under strict processing conditions. Every precaution has been taken to ensure that no gluten containing ingredients are included and all possible cross contamination is eliminated. Another great boxed mix is King Arthur Scones and cookie Mix, available in the United States and Canada. Follow the directions and they will be gone the first day! King Arthur also has a box flour, sold in the U.S.A. and Canada. You can substitute this flour in your regular recipes, use smaller pans, reduce your cooking time and you won't be digging them out of your muffin tins!
    DID YOU KNOW? That Betty Crocker now has a gluten free Bisquick? You can make pancakes, waffles, pizza base, meat pie topping, scones, and I even tried some muffins!
    Fast-food restaurants began to offer gluten-free foods as part of their regular menus as early as 2006. Each restaurant offers gluten free food based on their own criteria as there is no universal standard. {"What Fast Foods Are Gluten Free? Ehow.com }
    NOTE: "based on their own criteria as there is no universal standard". McDonald's provides food-allergy information on its website (see link in Resources) as do many other fast-food restaurants. The In-N-Out chain is the most gluten-free friendly fast-food restaurant, while McDonald's has the least number of choices that are gluten-free. Other fast food restaurants also vary in the number of gluten-free foods they offer. The Olive Garden has a separate menu for the celiac but it is slim pickings. The majority of foods offered at fast-food restaurants that are gluten-free consist of salads, ice cream products and some of the "side" dishes such as those made from potatoes. Keep in mind the "Buyer Beware" rule still applies. French fries are often coated with flour, like the wonderful Costco and McDonald's French fries, some ice creams even contain flour. If you don't ask, they won't tell you!
    Even gluten free food can vary by fast food restaurant; for example, while french fries at Sonic are gluten-free, those from McDonald's are not. You are the checker. Many of them have a black book or a binder with lists of ingredients for the products they provide. To be safe, check the allergy information first.
    THE CELIAC SCENE also has a sheet on " How to start a conversation on celiac friendly dining". It is really good, though I cannot imagine myself asking my waiter or server "Did you wash your hands/change gloves/change aprons before or in between preparing regular food?" We should, you know, and we have every right to question our server and the kitchen staff. Remember, gluten is poison to us and we can become very ill ingesting it. Questions like "Could the finished product become contaminated with gluten while waiting to be served?" and "How do servers confirm with the kitchen that the order they are collecting from them is gluten-free?" and "How do servers confirm with the customer that the order they are providing is gluten free?" and "Will my food be prepared in an area separate from the regular flow of the kitchen?" and "How do you ensure that all utensils used in preparing my food are free from traces of gluten?" There are a lot more questions on The Celiac Scene Guide for the Gluten Free, and if I can find it on the world wide web anyone can!
    DID YOU KNOW?: With regard to Domino's gluten free pizza, Yahoo Finance has a web site where you get the real story. The crust is appropriate for those with MILD gluten sensitivity, "But it is not recommended for people who have celiac disease." The NFCA says that one out of every 133 Americans has celiac disease or about 3 million Americans in all. Another 18 million have a less serious "sensitivity" to gluten, the organization says. Gluten is found in wheat, barley and rye. Celiac disease is a condition in which the immune system responds to gluten intake by damaging the small intestine. That can inhibit the absorption of various nutrients.
    GLUTEN AVOIDERS should be aware that the crust will be prepared in the same kitchen as the regular gluten-containing crusts, so some risk of gluten exposure will remain, the company said. Even so, the NFCA said it was happy to have Domino's on board. They may be "on board" but according to me they are going to sink if they do not make some rapid changes. I don't want to write any more about Domino's Pizza, and I'm sure you don't want to hear any more about it unless some big changes are made.
    Next time I'll write about excellent recipe books for the celiac. My cupboard is full! And a reminder from me, those lovely gluten free cakes on the glass covered bakery shelves - I urge you to ask how long they have been there. Some of those cakes, in certain bakeries, have been sitting in that case for a month, and the server is just using a piece of wax coated paper to box up bakery products, while passing them over the celiac baking. How do I know? My husband and I did a little checking during the summer and the lovely little banana sponge bomb was on that bakery shelf for a month.. Ick!
    Cheers! Until next time.

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/23/2018 - If you’re looking for a great gluten-free Mexican-style favorite that is sure to be a big hit at dinner or at your next potluck, try these green chili enchiladas with roasted cauliflower. The recipe calls for chicken, but they are just as delicious when made vegetarian using just the roasted cauliflower. Either way, these enchiladas will disappear fast. Roasted cauliflower gives these green chili chicken enchiladas a deep, smokey flavor that diners are sure to love.
    2 cans gluten-free green chili enchilada sauce (I use Hatch brand) 1 small head cauliflower, roasted and chopped 6 ounces chicken meat, browned ½ cup cotija cheese, crumbled ½ cup queso fresco, diced 1 medium onion, diced ⅓ cup green onions, minced ¼ cup radishes, sliced 1 tablespoon cooking oil 1 cup chopped cabbage, for serving ½ cup sliced cherry or grape tomatoes, for serving ¼ cup cilantro, chopped 1 dozen fresh corn tortillas  ⅔ cup oil, for softening tortillas 1 large avocado, cut into small chunks Note: For a tasty vegetarian version, just omit the chicken, double the roasted cauliflower, and prepare according to directions.
    Heat 1 tablespoon oil in a cast iron or ovenproof pan until hot.
    Add chicken and brown lightly on both sides. 
    Remove chicken to paper towels to cool.
    Cut cauliflower into small pieces and place in the oiled pan.
    Roast in oven at 350F until browned on both sides.
    Remove from the oven when tender. 
    Allow roasted cauliflower to cool.
    Chop cauliflower, or break into small pieces and set aside.
    Chop cooled chicken and set aside.
    Heat 1 inch of cooking oil in a small frying pan.
    When oil is hot, use a spatula to submerge a tortilla in the oil and leave only long enough to soften, about 10 seconds or so. 
    Remove soft tortilla to a paper towel and repeat with remaining tortillas.
    Pour enough enchilada sauce to coat the bottom of a large casserole pan.
    Dunk a tortilla into the sauce and cover both sides. Add more sauce as needed.
    Fill each tortilla with bits of chicken, cauliflower, onion, and queso fresco, and roll into shape.
    When pan is full of rolled enchiladas, top with remaining sauce.
    Cook at 350F until sauce bubbles.
    Remove and top with fresh cotija cheese and scallions.
    Serve with rice, beans, and cabbage, and garnish with avocado, cilantro, and sliced grape tomatoes.


    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

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    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.