Jump to content

Celiac.com Sponsor (A1):

Celiac.com Sponsor (A1-m):

  • You've found your Celiac Tribe! Join our like-minded, private community and share your story, get encouragement and connect with others.


    • Sign In
    • Sign Up
  • Kit Kellison
    Kit Kellison

    The Most Dangerous Diagnosis

    Reviewed and edited by a celiac disease expert.

    Journal of Gluten Sensitivity Spring 2009 Issue. NOTE: This article is from a back issue of our popular subscription-only paper newsletter. Some content may be outdated.

    The Most Dangerous Diagnosis - Everman EMS Medic 219. Image: CC BY 2.0--bharer75
    Caption: Everman EMS Medic 219. Image: CC BY 2.0--bharer75

    Celiac.com 05/30/2020 - Recently, I posted a query to ICORS Listserv’s celiac email group listing the following symptoms of hypochondria as found on the Mayo Clinic website:

    1. Excessive fear or anxiety about having a particular disease or condition.
    2. Worry that minor symptoms mean you have a serious illness.
    3. Seeking repeated medical exams or consultations.
    4. “Doctor shopping,” or frequently switching doctors.
    5. Frustration with doctors or medical care.
    6. Strained social relationships.
    7. Obsessive medical research.
    8. Emotional distress.
    9. Frequent checking of your body for problems, such as lumps or sores.
    10. Frequent checking of vital signs, such as pulse or blood pressure.
    11. Inability to be reassured by medical exams.
    12. Thinking you have a disease after reading or hearing about it.
    13. Avoidance of situations that make you feel anxious, such as being in a hospital.

    The response from people on the Listserv was immediate and most of them reflected my own experience on the long road to diagnosis.  Some responded with gratitude and relief that they were not alone and named their “symptoms” by number.

    Celiac.com Sponsor (A12):

    Celiac.com Sponsor (A12-m):

    “I too am guilty of 1, 2, 3, 4 sort of, 5 still am, 6-even my friends thought I was a little over the top, 7-still to this day, 8 never goes away, 11 wondering if the doctors actually have the right diagnosis.  After all it took them this long to come up with it.”

    “As far as the hypochondria list—I’m guilty of:  3 4 5 6 11 & 13.” 

    “I have not been treated for hypochondria, but I know people who were beginning to say it was all in my head.  I suffered from 3, 5, 11 and 12.  It took me nearly 8-10 years before they finally diagnosed me with celiac disease.  My mother-in-law went through the same thing until they diagnosed her thyroid condition.  After awhile, you’re afraid the doctors are going to see and think, “Oh, no! Not her again! What does she think she might have now?” ”

    There were many others who listed numbers or told their story.  This is my story about the long road to a celiac disease diagnosis:

    I was 42 years old and had been incapacitated for thirteen years by the time I was diagnosed with celiac disease.  My husband’s jobs in retail moved us so often (eight cities in thirteen years) that I had seen nearly two dozen doctors including a gynecologist, a rheumatologist and at least one family doctor in each city.  At the time of my diagnosis, I’d suffered over a decade from pain, severe fatigue, and anxiety as well as cognitive trouble that made me unemployable.  The question of digestive irregularity was sometimes brought up and dismissed as a nervous reaction.  My biggest concern, though, by far, was the drastic loss of cognitive function.  After I’d seen about a dozen doctors, I became savvy enough to quit bringing up my fibromyalgia and chronic fatigue diagnoses (the mention of which garnered responses anywhere from lip-tightening to eye-rolling, followed by anti-depressant prescriptions).  I never admitted to my first diagnosis which was hypochondria.

    After the birth of my last child, I began my quest for relief.  I saw a neurologist first, with the following complaints: My short-term memory was non-existent; I had severe fatigue; I had a severely impaired sense of direction, and; my reading and comprehension had slowed markedly.  Attending art school had become difficult because my visual memory seemed to have gone missing.  I could no longer hold a picture in my head between viewing the object and turning back to the paper to draw it.  The bonus of a tremor made my line-quality suffer which was extremely disheartening.  I couldn’t control line-width by subtle variation of pressure of the chalk on paper.  

    At home, completing mundane tasks required an outsized effort and was extremely frustrating.  I couldn’t remember a phone number long enough to dial it without referring back to it two or three times.  More often than not, I became confused and had to start dialing all over.  I frequently got lost in my own town while driving, and I began stammering in stressful situations.  

    At the neurologist’s office, I was given an EEG which showed no indication of nerve impairment.  Although my quality of life was annihilated, my neurologist was not impressed with my symptoms.  I was a 27-year-old mother of two small children, he said, as he looked at his watch and suggested that I get some rest and a psychiatric evaluation.

    I was naïve.  I thought that by getting an evaluation I would prove that I was earnestly looking for an answer.  I made an appointment with a psychiatrist to give me the exam.  The test was exhausting; it went on for hours.  There was a long questionnaire that asked, several times in different ways, whether I ever heard voices or believed people were following me.  I was asked many times, each time in slightly different way, what my most fervent desire was.  My answer was always that I wanted to get well.  

    After the questionnaire, I was given a round of verbal tests, that involved word recall and some non verbal tests that involved drawing pictures and assembling puzzles.  I had a very hard time finding synonyms and naming objects, but my puzzles went together very quickly, I was told.  

    When I went back to the neurologist he said that because of the psychiatric report, diagnosing hypochondria, I wasn’t a suitable patient and he could do nothing for me.  

    I tried to believe in the possibility that I did, indeed, have hypochondria.  At least that was something I could be responsible for; something over which I could take control.  Raised with a belief in the ability of the mind to affect the body, I looked into the disease of hypochondriasis.  I was desperate to help myself so I researched our home medical encyclopedia (this was a while before the Internet) and bought a book on the subject of hypochondria.  I learned that it was then considered a fairly rare illness, and that real hypochondriacs drew some benefit from the sympathy they received due to the perception they are ill.  That was far from the case with me.

    On the verge of a divorce because my husband hadn’t yet come around to believing that I was actually ill, I was getting no sympathy from him or his family.  My siblings found it more convenient to believe I was either lazy or exaggerating my complaints than to do anything to help with my two small boys.  My parents, who believed me, were too elderly and ill to help much, but my mother would send over the occasional roast beef dinner which I received with tears of gratitude.  I rejected the concept of hypochondria when I saw that there was absolutely nothing in it for me, and wondered who in the world could possibly benefit from such a mindset.  

    When I received a bill from the psychiatrist, I wrote him to insist on a copy of my test results.  He was very reluctant, and told me I might not like what I found.  I told him he might not get paid if I didn’t have the access to my file.  His one-paragraph evaluation stated that although there was a big discrepancy between my verbal skills and sorting tests, and although I did seem to want to get well, since I still complained and nothing was found, I was a hypochondriac.  In other words, the results of the hours of expensive testing were discounted and he made a diagnosis based on the fact that I had no other diagnosis.  I, too, discounted the value of the test by refusing to pay for it.

    The weeks dragged into years.  Many days I was so weak that I could only lock myself and my toddlers in my bedroom with diapers, baby food and formula and lie on the floor with them.  Just trying to stay conscious to make sure they didn’t hurt themselves required a monumental effort.  Often, I was too ill to prepare even a sandwich for myself.  Periods lost in this type of exhaustion continued on and off for over a decade until my eighth gynecologist discovered the pain in my outer abdomen.  I admitted to having long bouts of diarrhea that I had sometimes been unable to control.  

    He insisted that before I leave the exam room that I get an appointment with a gastroenterologist whom he knew to be very competent.  Before I left, I had an appointment in hand, written on a prescription sheet.  I can’t express the warmth and gratitude I still feel toward this doctor who took my health so seriously when I’d come to feel so disposable.  

    A few weeks later, I was diagnosed with celiac disease and started the arduous journey toward a completely gluten-free diet, the only treatment yet available.  I saw a significant improvement just 12 hours into the diet, and thought my suffering was over.

    It wasn’t.  I had become ill with Graves’ disease which my family doctor was unwilling to diagnose.  After a few weeks with a heartbeat at 144 beats per minute, I asked to be referred to an endocrinologist who ordered new labs.  I put my arm out for another prick, tried to breathe slowly, and decided to stop at Barnes and Noble on the way home to buy a book so I could read up on diagnostic criteria.  By this time in my life, I’d become quite unwilling to trust my health to any one person.

    It may well be that I am here today because I took the initiative to do a little of my own research.  My first endocrinologist misread my lab results and declared that I was getting better and suggested a “wait and see” approach.  While I was on the phone, I tried to remain calm despite the hammering in my chest and the excruciating sense of urgency spreading across my throat.  I calmly, if haltingly, asked for the numbers of my new test results.  

    The man had read the results wrong.  He thought they were getting better, but because he compared results from two different labs, he hadn’t perceived that both sets of lab results showed a non-existent production of thyroid stimulating hormone, a sure sign that my thyroid was in overdrive.  

    After asking for a second opinion, I was diagnosed with Graves’ disease and finally, after four months of agony, put on anti-thyroid drugs which returned me to a state of relative normalcy.  Graves’ disease, before the invention of these drugs, by the way, had a 50% survival rate.  I could just as easily be dead today.

    Naturally, when I consider the years I lost when my boys were small, I still get angry.  I wonder if my physically talented son, Patrick, would have been a baseball star had I been able to cheer him on at his games.  I wonder whether more time with Stevie puttering in the garden and encouraging his extraordinary love of natural science would have invested him with more self-confidence.  Perhaps that would have made his middle school years less excruciating.  I would have loved to visit my older daughter in Manhattan and taken in a show once in a while, but was always too weak when it came time to live up to my plans.  I wish I had been able to finish my schooling and get a job to help take the load off my husband who has been the sole breadwinner for all of our marriage.  

    I carry all of these regrets in the pain in my back, I believe, and still look forward to the day I can lay them down.

    In the early stages, after the Graves’ diagnosis, a rage ran through me that burned like poison in my veins.  The tens of thousands of dollars that were wasted on tests, the snide comments and the derisive looks from medical professionals, friends, neighbors and family still boil in the back of my consciousness.  I started to write to every doctor that had failed me, then threw the letters away, knowing they’d just take me for a hysteric, and simply consider my case anecdotal.  I started goading my friends into questioning their doctors and getting second opinions.  I saw undiagnosed celiac disease or Graves’ disease in nearly everyone I met.

    Then something, something beyond will or intent, something deep within me broke.  I realized that my trials, my ill health, my burdenhood were really not my fault.  Yes, yes, all this time I’d been telling myself this truth, but now the clouds of recrimination and responsibility were actually parting.  Finally, after several years of righteous anger and indignation, for the first time, I allowed myself to grieve over my lost years of health.  I began to realize how, even though I fought tooth and nail against the idea that my illness was all in my head, that the very perception of me as weak-minded had the power to alter my perception of myself.  This was a true epiphany.  My mother had taught me that if I was doing the right thing, that the opinions of other people meant nothing, but after being told so many times that it was normal to be tired, or that I had occult depression, or lectured that I should not let myself get stressed out, I had begun to feel like someone who couldn’t be trusted no matter how trustworthy I was.  I had become the mythical Cassandra’s twin sister.

    My story is far from unique.  When the dozens of people who responded to my inquiry on the Listserv shared their stories, I began to see a pattern of systemic failure in our medical system.  Some of these stories can only be described as horrific.

    Kat Fury, who responded with a thoughtful email, told me how she suffered agony for years before she was finally diagnosed with celiac disease and Ehlers-Danlos Syndrome type 3.  She had this to say:

    By the time I was five I had learned to not complain about things hurting me or the dislocation of my limbs.  My parents didn’t believe in doctors, but having enough of my being “lazy, depressed, and bulimic” they had me hospitalized in a psychiatric ward for said symptoms.  This confirmed my worst fear, that I was crazy and that everyone felt this kind of daily pain.  Even though I couldn’t keep my food down sometimes, and the pain of both disorders was unbearable, I rarely complained.  During my stay in the psychiatric facility I met a girl with a diagnosis of Reynaud’s Syndrome, a circulatory disorder.  When I learned about it I discovered I also had all of her symptoms, usually worse.  I made the mistake of saying something and was punished by being put into solitary confinement for a week.

    Kat was eventually diagnosed with Ehlers-Danlos Syndrome, a rare genetic mutation that causes her to have inadequate collagen and be overly flexible.  Before her diagnosis she once got dismissed from work after being caught trying to put her shoulder back into its socket.  She was told not to come back without a doctor’s note.  Because of her intense guilt over not being able to handle her aches and pains, she misunderstood.  She thought she had been fired and she never returned to her job.  The incompetent treatment she received as a medical patient left her with psychological wounds so severe she couldn’t even take her own dislocated shoulder seriously.

    She went on to describe how her EDS diagnosis made doctors reluctant to treat her broken back after a car accident.  She is now permanently unable to walk unassisted.  Her mistreatment defies comprehension.  She related this insight “…my body has many things considered rare, but the more I investigate my genetic propensity for these diseases, the more I learn they are only rare because of a systemic failure to diagnose.” … If my doctors had stopped using the saying ‘When you hear hoof beats think horses not zebras’ I would’ve had a better childhood.”

    Unfortunately, those who have celiac disease, thyroid disease and Ehlers Danlos syndrome are not alone.  Patients with difficult to diagnose autoimmune disease are all at terrible risk of permanent damage to their health because of delays in diagnosis and treatment.  There seems to be no standard of care in place to look beyond the horses to find the zebras.  Drug companies, who have made themselves the physicians’ source of new information and medical advancement, have no interest in talking about diseases for which there is no drug currently under patent.  The current practice of confining office visits to eight-minutes, along with insurance company pressure to limit testing, it is likely that anyone who doesn’t have a popular illness with textbook symptoms is going to get shunted aside and labeled “hypochondriac.”  

    This label serves many functions.  It aids in the loss of family support, replacing it with disgust, which makes it more difficult for the patient to believe in herself, or continue to bother her doctor with her concerns.  Labeling a complaining patient as a hypochondriac allows the doctor to feel antipathy instead of sympathy, which is efficient and cost-effective because it releases the doctor from any obligation to do the time-consuming research needed to follow up on her case.  In the big picture, creating a culture that makes this apocryphal diagnosis so very pervasive makes patients more likely to change doctors, which results in more first-visit charges, which are usually more than double the price of a regular office visit.  Hence, every doctor’s coffers are fortified.  

    We like to think that our doctors think like Dr. House on the TV series…that they won’t give up on us until they figure out what is really wrong, that when they rule out the common diseases, they will follow the trail to the less common sources of symptoms, but this is rarely the case.  Any time a patient is given a diagnosis of exclusion, that ends in the word “syndrome,” that means your doctor has given up.  Fibromyalgia syndrome is one of these.  No known etiology, a vague collection of symptoms, no further need to research once cancer and Crohn’s disease are ruled out.  The same goes for “irritable bowel syndrome.” Although there are plenty of expensive drugs to treat it, it isn’t an actual disease, it’s a medical stalemate.  Perhaps you actually have small intestinal bacterial overgrowth or an intestinal yeast infection, or God forbid, celiac disease.  Most patients will never know, because there are plenty of expensive new drugs on the market that treat and mask only the symptoms.

    Hypochondria may be a real psychiatric condition, but its diagnosis depends on the black and white determination that there really is nothing physically wrong with the patient.  Otherwise, it is perfectly understandable that a curious, pro-active person would try again and again to get help, and investigate her symptoms.  To tell a patient conclusively that there is nothing wrong with her requires a burden of proof that is insurmountable, since not every disease is immediately diagnosable and not every disease is well-known.  The fair thing to say would be something along the lines of: “I’m at the limits of my capability to help you,” or, more honestly, “Digging any deeper into the cause of your malaise is more than I care to do.”

    The cracks in the system are becoming more noticeable.  Because of patient awareness and activism, conditions once thought to be rare, such as celiac disease, are now known to be common.  When I was diagnosed with celiac disease in 2002, it was thought to have a prevalence of one in 4200 people in the general population.  It is now known to affect around one in a hundred.  Other recent examples are the greatly increased prevalence of thyroid disease, vitamin D and vitamin B12 deficiencies.  Any of these can cause an array of vague but debilitating symptoms, such as generalized pain and chronic fatigue.  Yet the suspicion of hypochondria is always at the forefront.  This should not be the case.  Such a diagnosis has a terrible impact on the patient’s mental and physical health.  It should be considered with the greatest of caution instead of flung, like monkey-product, in arrogance.  This egregious mistake violates both the spirit and the letter of the Hippocratic Oath, “First, do no harm.”

    If, as the Mayo site suggests, hypochondria diagnoses occur at a rate of between one and five percent of all patients, consider this: Celiac disease and thyroid diseases occur at rates of one percent and at least five percent respectively.  These two severely under-diagnosed conditions alone pretty much take care of the alleged prevalence of hypochondria in the general population.  Add to those patients anyone else with difficult-to-diagnose ailments such as lupus, multiple sclerosis or any of the dozens of other autoimmune diseases less familiar to the family practitioner, and we are easily past the full suspected five percent.  For these reasons, it is high time we sent the diagnosis of hypochondria to the dust-bin of history.  

    User Feedback

    Recommended Comments

    I was called a hypochondriac as a child. And again recently prior to my Celiac diagnosis. Despite all the doubts expressed by various doctors and family members, my body was telling me otherwise. The journey was one of the most horrid experiences. I dread going through the process again as I suspect a new autoimmune condition at hand. 

    I wish it were easier. 

    Link to comment
    Share on other sites

    Join the conversation

    You are posting as a guest. If you have an account, sign in now to post with your account.
    Note: Your post will require moderator approval before it will be visible.

    Add a comment...

    ×   Pasted as rich text.   Restore formatting

      Only 75 emoji are allowed.

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

    ×   Your previous content has been restored.   Clear editor

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

  • About Me

    Kit Kellison

    Kit Kellison works for a web-based patient advocacy group called "ThyroidChange" which is making inroads toward getting the attention that this issue deserves, and they request your help. Please visit www.thyroidchange.com and sign the petition demanding better care. There is a page for clinical studies and research papers for those who would like to further explore this topic.

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):

    Celiac.com Sponsors (A17-m):

  • Related Articles

    Jefferson Adams
    Celiac.com 07/13/2010 - More and more, researchers are showing connections between inflammatory diseases, like celiac disease, and complex disorders, such as anxiety and depression. There's also a good amount of anecdotal evidence to suggest that people with celiac disease have higher rates of anxiety and depression than the general population.
    A study of the German population is the first to show that female adults following a gluten-free diet for celiac disease show higher levels of anxiety than do members of the general population.
    The researchers are recommending that female celiacs on a gluten-free diet be screened for anxiety. The researchers included W. Häuser, K. H. Janke, B. Klump, M. Gregor, and A. Hinz of the Department of Internal Medicine I of the Klinikum Saarbrücken, Winterberg in Saarbrücken, Germany.
    The team set out to examine levels of depression and anxiety between adults with celiac disease following a gluten-free diet (GFD), and in control subjects drawn from the general population.
    For their study, the team used the Hospital Anxiety and Depression Scale to measure levels of anxiety, depression, and likely anxiety or depressive disorder, in 441 adult patients with celiac disease recruited by the German Celiac Society. They then conducted the same assessments on 235 comparable patients with inflammatory bowel disease (IBD), either in remission or with slight disease activity. They did the same for the cross-sample control group of 441 adults from the general population.
    The team used regression analysis to test possible demographic and disease-related predictors of anxiety and depression in celiac disease. Demographic predictors included age, sex, social class, and family status. Disease-related predictors included latency to diagnosis, duration of GFD, compliance with GFD, thyroid disease.
    The team found that female gender (P = 0.01) was the main predictor (R(2) = 0.07) of anxiety levels in patients with celiac disease. Female patients had a higher risk for a probable anxiety disorder (OR = 3.6, 95% CI: 1.3-9.4, P = 0.01)  Patients who lived alone (OR = 0.5, 95% CI: 0.2-0.9, P = 0.05) enjoyed a lower risk of anxiety disorder. None of the demographic and medical variables for which the team screened predicted either depression levels or risk for a probable depressive disorders.
    Patients with celiac disease showed anxiety levels of 6.6 +/- 3.4, and those with IBD, anxiety levels of 6.9 +/- 3.7, both higher than the general population's level of 4.6 +/- 3.3 - (both P < 0.001). Depression levels were similar for people with celiac disease (4.2 +/- 3.4), IBD (4.6 +/- 3.4) and the general population (4.2 +/- 3.8) (P = 0.3). Rates of likely anxiety disorders in people with celiac disease were 16.8%, and 14.0% for IBD, both higher than the rates of 5.7% in the general population (P < 0.001). All three groups showed similar rates of probable depressive disorder (P = 0.1).
    Their results provide strong indications that adult women with celiac disease on a gluten-free diet suffer higher rates of anxiety than persons of the general population. They encourage clinicians to provide anxiety screens for adult women with celiac disease on a gluten-free diet.

    World J Gastroenterol. 2010 Jun 14;16(22):2780-7. PMID 20533598

    Jefferson Adams
    Celiac.com 01/13/2014 - Researchers have documented stress in patients with various immune-mediated diseases but little is known about stressful life events and the onset of celiac disease from a patient's perspective. 
    Using the standardized interview of Paykel, a team of researchers set out to examine the relationship of stressful events in patients diagnosed with celiac disease, and to compare them with a control group of gastroesophageal reflux patients.
    The research team included C. Ciacci, M. Siniscalchi, C. Bucci, F. Zingone, I. Morra, and P. Iovino, of the Department of Medicine and Surgery at the University of Salerno in Italy.
    They found that 186 adults (67.2%) with celiac disease reported more frequent and more severe life events in the years prior to the diagnosis, compared with 96 control patients (37.5%, p < 0.001, mean Paykel score 11.5 vs. 13.4, p = 0.001, respectively).
    Overall, the time lapse between the event and the diagnosis was about the same for celiac patients (5.5 months) as it was for control patients for (5.7 months).
    A total of 20.3% of celiac women considered pregnancy a negative event , but no control women defined pregnancy as a negative event..
    Repeat analyses subgroup of patients of both groups with diagnosis made within one year of onset of symptoms confirmed these findings.
    Data indicate that, before diagnosis, people with celiac disease faced stressful events that were more frequent, but less severe than in the control group suggesting that life events may impact the clinical appearance of celiac disease or accelerate its diagnosis.
    Nutrients. 2013 Aug 28;5(9):3388-98. doi: 10.3390/nu5093388.

    Jefferson Adams
    Celiac.com 05/29/2014 - Many people with celiac disease report symptoms of depression, which usually subside upon treatment with a gluten-free diet. But a new study out of Australia suggests that gluten can cause depression in people with non-celiac gluten-sensitivity.
    Current evidence shows that many patients with self-reported non-celiac gluten sensitivity (NCGS) continue to have gastrointestinal symptoms on a gluten-free diet, but say that avoiding gluten makes them feel ‘better'. So, why do people with non-celiac gluten sensitivity seem to feel better on a gluten-free diet, even if they still have gastrointestinal symptoms? A team of researchers wanted to know if this might be due to gluten’s effects on the mental state of those with NCGS, and not necessarily because of gastrointestinal symptoms.
    The research team included S. L. Peters, J. R. Biesiekierski, G. W. Yelland, J. G. Muir, and P. R. Gibson. They are affiliated with the Department of Gastroenterology, Central Clinical School of Monash University at The Alfred Hospital in Melbourne, the Department of Gastroenterology at the Eastern Health Clinical School of Monash University in Box Hill, and the School of Health Sciences at RMIT University in Bundoora, Victoria, Australia.
    For their double-blind cross-over study, they looked at 17 women and five men, aged 24–62 years. All participants suffered from irritable bowel syndrome, but not from celiac disease, and their symptoms were controlled on a gluten-free diet. The team gave the participants one of three random dietary challenges over 3 days, followed by a minimum 3-day washout before moving to the next diet. All participants got all three diets over the course of the study.
    For each phase, the team supplemented the challenge gluten-free food with gluten, (16 g/day), whey (16 g/day) or nothing at all (placebo). The team assessed mental state as determined by the Spielberger State Trait Personality Inventory (STPI), cortisol secretion and gastrointestinal symptoms.
    They found that gluten ingestion was associated with higher overall STPI state depression scores compared to placebo [M = 2.03, 95% CI (0.55–3.51), P = 0.010], but not whey [M = 1.48, 95% CI (−0.14 to 3.10), P = 0.07]. They found no differences for other STPI state indices or for any STPI trait measures, and they saw no difference in cortisol secretion between challenges. Gastrointestinal symptoms were similar for each dietary challenge.
    Short-term exposure to gluten specifically induced current feelings of depression with no effect on other indices or on emotional disposition. Moreover, the team saw no gluten-specific trigger of gastrointestinal symptoms. Such findings might explain why patients with non-coeliac gluten sensitivity feel better on a gluten-free diet despite the continuation of gastrointestinal symptoms.
    Aliment Pharmacol Ther. 2014;39(10):1104-1112.

    Jefferson Adams
    Celiac.com 12/19/2017 - The Canadian Celiac Association (CCA) finds itself facing questions of rumor-mongering and inaccuracy in the face of its ongoing comments about General Mills and Gluten Free Cheerios.
    The CCA recently retracted a controversial October 20 press release in the face of questions about the accuracy and validity of its statements. The retraction reads as follows: "The CCA retracts its statement of October 20, 2017 and replaces it with this statement due to errors in the original statement." They retracted every claim made in the first press release. 
    In addition to its erroneous, and now retracted press release, the CCA has made numerous public statements casting doubt on the process General Mills uses to create their Gluten-Free Cheerios, and other oat-based cereal products. The CCA has spread fear and confusion about the gluten-free status of Cheerios, and implied widespread gluten contamination in Cheerios. For example, the following statement attributed to the CCA was published on October 26, 2017 by Globalnews.ca: "[CCA] expressed doubt in the company's mechanical sorting system and claim of 100 per cent removal of cross-contaminants."
    Additionaly, Canadiangrocer.com reported in August 2016 that the CCA was, to paraphrase, "awaiting evidence showing the new line [of Gluten Free Cheerios] is 100% free of gluten." The article quotes Sue Newell, the CCA Manager, Education and Special Projects, as saying: "Our fear is that there are hot spots in their oats. Any given box may be fine, but every third or fifth box may not."
    Canadiangrocer.com has quoted the CCA's Manager making a very specific claim about the gluten-free status of Cheerios. If her claim is correct it would mean that 20% to 30% of all Cheerios boxes are contaminated with gluten above 20 ppm, and General Mills is producing millions of boxes of tainted cereal per month which are fraudulently labeled "gluten-free." When Celiac.com invited Sue Newell to further clarify her position she would neither confirm nor deny making the quotes, but instead said that her quotes were simply "media impressions." Although Celiac.com requested more clarification, Ms. Newell would not respond to further written questions (re-printed below) about her "media impressions." 
    Celiac.com also requested that the CCA produce any evidence to back up their claims, but so far the CCA hasn't produced anything. In response to our questions (re-printed below), which mostly remain unanswered, the CCA demurred with vague claims about general levels of gluten contamination in raw oats, and even more vague claims about the unreliability of optical sorting systems in removing gluten. They referred to studies that, after further review, appear to be unrelated to General Mills' proprietary sorting and production processes.
    CBC reported on August 31 2016, that the "Canadian Celiac Association is warning against gluten-free Cheerios products over concerns the cereal is not 100 per cent safe for people with celiac disease." What does the CCA mean by "100 percent safe for people with celiac disease?" To our knowledge General Mills has never made the claim that their sorting process results in "100 percent removal" of gluten from the oats used in their Cheerios. It is our understanding that General Mills has only ever claimed that their process results in gluten levels under 20 ppm, which allows them to be labeled "gluten-free" in both the USA and Canada, and as such they are considered safe to consume for those with celiac disease. When Celiac.com asked the CCA to provide a source for the "100% free of gluten" General Mills claim, or for clarification of her "100 per cent safe for people with celiac disease" statement, no response was provided. 
    Is the CCA hinting that the labeling standard for gluten-free products should be 0 ppm allowable gluten? Again, they would not answer this question.  It seems that the CCA made this recommendation and their associated statements based not on independent product testing, or on any confirmed accounts of gluten-exposure in people with celiac disease who had consumed Cheerios, but instead on anecdotal evidence and innuendo. 
    For their part, General Mills has at least publicly described their optical sorting process, and have gone on the record as saying that their raw unsorted oats contain anywhere from 200 ppm to 1,000 ppm gluten. They describe exactly how their sorting process reduces the gluten content in their oats to below 20 ppm, and how they then pulverize, process, and mix their sorted oats to make Cheerios (from Celiac.com's perspective it is this milling/pulverizing and mixing process that should eliminate any chance of "hot spots"). They have even applied for a patent on their optical sorting technology, and in order to receive this patent their process needs to function as described. Ultimately General Mills stands by their product every day by putting a "Gluten Free" label on every box right next to their trade mark. 
    Remember Paul Seelig? Back in 2011, before we even had gluten-free labeling laws in the USA, he sold regular bread that was labeled as "gluten-free." He was tried and convicted of fraud and was sentenced to 11 years in prison. The idea that people can just slap a gluten-free label on a product that contains gluten above 20 ppm and somehow escape our judicial system, whether it be private attorneys who sue them or criminal prosecutors, is highly unlikely.
    Ultimately the CCA is calling General Mills, Health Canada and the FDA into question when they make unfounded claims based solely on fear and innuendo. The CCA is also casting doubt on U.S. and Canadian gluten-free standards. If 20% to 30% of Cheerios contain "hot spots" of gluten contamination, then why can't the CCA, or anyone else, produce a single box that is tainted? Where are the trial lawyers who ought to be lining up to sue them?
    Cheerios are are subject to regular, random testing by both Health Canada and the FDA. The FDA recently tested major American gluten-free brands for gluten-free labeling compliance and found that 99.5% of products tested are compliant with current gluten-free standards. The FDA found just one non-compliant product out of the hundreds they tested. They worked with the manufacturer to recall the tainted product and correct the manufacturing process. There is no indication that the non-compliant product was Cheerios or any other General Mills product.
    In this case the burden of proof for such extraordinary claims lies with the CCA, and not with General Mills. Someone can claim that the Earth is flat, or that humans never walked on the moon, however, the burden of disproving such claims doesn't lie with scientists who spent their entire lives creating a massive body of evidence which support what are now generally accepted facts, but with those making the extraordinary claims. Accordingly, it is only fair that the CCA must back up their claims with more than the equivalent of a vague conspiracy theory, which to disprove, would require General Mills to literally test every piece of cereal in every box of Cheerios (i.e., billions of boxes).
    General Mills returned our telephone calls and freely answered our questions. They provided a reasonable description of their sorting process and answered our questions about it. The CCA has been coy and evasive when questioned about their past statements, their claims about Cheerios, and their stance on the 20 ppm gluten-free standard, or any other standard for gluten-free labeling. Until such time as the CCA stands by their statements, and until they provide actual evidence to back up their claims, their claims should be regarded with skepticism.
    In their reply to our questions, the CCA included three links to articles they feel support their position on oats:
    https://www.ncbi.nlm.nih.gov/pubmed/21623493  Koerner et al 2011 http://www.sciencedirect.com/science/article/pii/S0308814616312614  Fritz et. al 2016 http://onlinelibrary.wiley.com/doi/10.1111/ijfs.13288/full Fritz et al 2016 Celiac.com addresses those studies in a separate article, entitled: Why Do Quaker and General Mills Approach Gluten-Free Oats Differently?
    Questions Emailed to the CCA by Celiac.com, followed by their response:
    QUESTIONS FOR THE CCA REGARDING CHEERIOS GLUTEN-FREE LABELING AND RELATED ISSUES: The standard for under 20 ppm allowable gluten in gluten-free foods remains unchanged. in Canada, the US, and the EU. The standard is supported by Health Canada, which says that gluten levels under 20 ppm are safe for the vast majority of people with celiac disease. The 20 ppm standard is also supported by the CFIA, the FDA, the EU, by scientific and medical data, and by all major celiac disease researchers. QUESTIONS: 1) Health Canada says that 20 ppm gluten is safe for celiacs. Does the CCA believe and support that standard?  
    ANSWER: No Response. If not, what standard is safe, according the CCA?  
    ANSWER: No Response. 2) Health Canada allows up to 5 ppm gluten in "Marketing Authorization" oats. Obviously, gluten content above 0 but under 5 ppm is not "100% gluten-free. Does the CCA have any problem with such "gluten-free" oats?  
    ANSWER: No Response. 3) With respect to the gluten-free Cheerios products in Canada, Candiangrocer.com reported in August 2016 that the CCA was, to paraphrase, "awaiting evidence showing the new line is 100% free of gluten." Is that still the position of the CCA?  
    ANSWER: No Response. 4) The Candiangrocer.com article also states: "Our fear is that there are hot spots in their oats," said Newell. "Any given box may be fine, but every third or fifth box may not." Is the CCA asserting that 20% to 30% of Cheerios boxes are contaminated with gluten? What is the basis for this claim? Is the CCA forming policy based actual official test results?  
    ANSWER: No Response. 5) Similarly, the CBC reported on August 31 2016, that the "Canadian Celiac Association is warning against gluten-free Cheerios products over concerns the cereal is not 100 per cent safe for people with celiac disease." Can you clarify what you mean by "100% gluten-free" and "100 percent safe for people with celiac disease?"  
    ANSWER: No Response. 6) In a recent article published in October 26, 2017, Globalnews.ca writes "[CCA] expressed doubt in the company's" mechanical sorting system and claim of 100 per cent removal of cross-contaminants. https://globalnews.ca/news/3826328/celiac-association-applauds-general-mills-decision-to-pull-gluten-free-label-from-cheerios/    
    ANSWER: No Response. 7) Again, can CCA clarify what it means by "100 percent removal" of gluten?  
    ANSWER: No Response. 😎 Also, we are unaware of General Mills ever making a claim that their sorting process results in a "100 percent removal" of gluten from the oats used to makes Cheerios, only that their process results in gluten levels under 20 ppm, and within the range for labeling product as gluten-free. Can CCA provide any source for General Mills ever making a claim that their sorting process for oats results in a 100 percent removal of all gluten? [ http://www.foodbusinessnews.net/articles/news_home/Research/2017/10/General_Mills_details_gluten-d.aspx?ID=%7BD74CACED-0224-49C3-951A-4E62E87AA243%7D&cck=1 ]  
    ANSWER: No Response. 9) Is it the position of the CCA that the standard for gluten-free labeling should be 0 ppm allowable gluten? If so, how would that be measured? What products would be able to makes such a claim?  
    ANSWER: No Response. 10) Does the CCA have any scientific data that shows that gluten levels under 20 ppm are dangerous or harmful for people with celiac disease?  
    ANSWER: No Response. 11) Does the CCA have any scientific data or medical testing to show that Cheerios do not meet the 20 ppm standard for gluten?  
    ANSWER: No Response. 12) If Cheerios meet US FDA standards for gluten-free products, and routinely test at below 20 ppm gluten, does the CCA feel removing the gluten-free label in Canada makes people with celiac disease any safer? If yes, how?  
    ANSWER: No Response. 13) Regarding CCA claims of member complaints about Cheerios: Is it not possible that people who claim an adverse reaction to Cheerios are actually having a reaction to the avenin protein in oats, or to higher fiber in oats?  
    ANSWER: No Response.

  • Popular Now

  • Create New...