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Celiac.com 02/01/2019 - When I was first diagnosed, I couldn’t believe the “rhetoric” about how sensitive a person with celiac disease is. It just didn’t resonate. I remember being told at a support group by a woman I deemed at the time to be histrionic, that a plastic strainer previously used to drain gluten-containing pasta could cross contaminate me, and that microscopic crumbs on the counter could be deadly. It just seemed to me at the time that she was “over reacting.” I thought: “Nobody could be that sensitive!” Back then I continued to bake gluten-containing goods for my husband. (That was torture by the way, to make my favorite brownies for him and not eat any of the batter.) I made him gluten-containing bread in my bread machine. I continued to have the terrible rashes. Noticing this, my husband suggested that he only buy store-bought bread, and promised to be very careful with the crumbs. We separated the condiments, labeling the ones I used as “gluten free” with a Sharpie and storing them on separate shelves. I continued to have the terrible rashes, becoming desperate for them to go away. Somehow, in spite of his carefulness, I was getting “glutened.” We decided together that we had to make the house gluten-free. Meanwhile, I developed recipes that replicated the foods we loved before – all gluten-free. I finally recovered my health because of living in a completely gluten-free home. I realized that the support group woman was right, and that a minute amount of gluten can cause me weeks of misery. Today, we do not allow gluten in our home at all, except in the bottled beer my husband occasionally drinks. Beer leaves no crumbs and is easy to contain, and it is a small concession for all that my husband does to accommodate me. Many of the people I interviewed in the survey (Relational Aspects of Food Sensitivities - Survey Half-Time Report) reported that they also have gluten-free homes, but some didn’t. Those who didn’t described being regularly cross-contaminated in their own homes. Those who lived with the ever-present threat of accidentally ingesting gluten reported relationship strife. Several participants told me that gluten was the “straw that broke the camel’s back” in breaking up their partnerships. Having to dodge gluten in the one place that all of us should feel the safest compels me to contrast other diseases such as diabetes, alcoholism, and coronary heart disease with the experiences I discovered with my research of those living with celiac disease. Diabetes is a life-threatening illness that requires vigilant management A study conducted by Rintala, Paavilainen and Kurki (2013) showed that families members living with an individual with diabetes often engage in compassionate behavior, such as urging glucose checks, offering appropriate foods and keeping a close watch for signs of hypoglycemia. The authors reported that family members consider the management of diabetes as an integral responsibility to ensure adherence. Another study conducted by Manoogian, Harter and Denham (2010) found that family members take on an attitude of solidarity to support members with diabetes. When a person declares they have diabetes, their dietary needs are typically respected. Contrastingly, when a person determines they are gluten sensitive, they are often subjected to scrutiny, suspicion, and doubt. Many participants that I interviewed expressed frustration in convincing family members of their gluten-free requirements. Whereas those with diabetes can sometimes indulge in sugar consumption, adjusting their insulin accordingly, for those with celiac disease, a little gluten is not an option. Presently, those with celiac disease do not have a reliable gluten-cancelling drug. Cohabitants living with a recovering alcoholic are urged to curtail alcohol in the home The prevailing advice for families with a recovering alcoholic is to maintain a ‘dry’ home (a home without alcohol) in order to reduce temptation and to make it less available to encourage long-term abstinence (Groh, Jason, Davis, Olson, & Ferrari, 2007). Further, to reduce feelings of isolation on the part of the recovering alcoholic, it is recommended that family social gatherings forego serving alcoholic beverages. In addition to removing all alcohol from the home, recovery centers (Addiction Center, 2018) also recommend finding ‘sober’ activities to do together, building a peer group of ‘sober’ friends and focusing on different elements of life, to help the recovering alcoholic maintain sobriety. Of course, all families handle this differently, ranging from full cooperation and support, to continuing to drink in front of the recovering alcoholic. A person with celiac disease living in a gluten-filled home is similar to a recovering alcoholic living among regular alcohol consumers. It just causes strife. Another disease that affects family diets includes coronary heart disease In a longitudinal study of nearly 200 families, McKenzie (1982) found that family compliance to the heart-friendly diet ensured success for the family member with heart disease. In fact, family compliance and adherence achieved the highest levels of success (p. 104). Many of the participants in my study reported that their families, especially extended families, did not adhere to the gluten-free diet. Celiac Disease is a life-altering illness that requires vigilant, lifelong adherence to the gluten free diet Living in a house where gluten is present poses serious health risks for those with celiac disease or non-celiac gluten sensitivities (NCGS). Gluten crumbs and flour dust in the air affect those who are most sensitive. The risk of cross-contamination through the slip of a knife on bread makes it risky once the jar is open. Airborne gluten inhaled from cutting a gluten-containing sandwich, according to Hendricks (2013) and flour dust from baking is enough to “trigger the inflammatory cascade” for those with celiac disease (p. 52). Those with celiac disease who live in homes where gluten is the fare risk cross-contamination. Research by Catassi et al. (2007) indicates that 200 ppm, the amount of gluten permitted in European “gluten-free” products that are made using Codex wheat starch, “is not a safe threshold because the harmful gluten intake of 50 mg/d could be reached even with a moderate consumption (less than or equal to 250 g/d) of nominally gluten-free products” (p. 165). Further, Laurin, Wolving and Fälth-Magnusson (2002) report that gluten in small quantities can trigger relapses for those with celiac disease. Therefore, a person with celiac disease living in a home where gluten is present may present an ongoing health hazard. In the interviews I conducted last year for my dissertation, many participants reported that their homes were not gluten-free. Some said they have suffered regular cross-contamination as a result become sickened on a regular basis. In a quality of life study, Peniamina, Bremer, Conner and Mirosa (2014) found that those with celiac disease reported, “Other people don’t understand about my food allergy and are uncooperative or unkind toward me” (p. 935). Is it unkind for other family members to continue to consume gluten containing foods in the home of a person with celiac disease? What do you think? Here are some conversation-starter questions: Is it reasonable for those with celiac disease or NCGS to request a gluten-free home – similar to the homes described above for those with coronary heart disease, or recovering from alcoholism, or living with diabetes? Someone I know recently told me that he was going to keep eating gluten in spite of the consequences because he was afraid his soon-to-be-wife would not marry him if he had such drastic dietary restrictions. Is the diagnosis of celiac disease or food allergies potentially a relationship breaker? How do you manage to stay gluten-free and un-cross-contaminated in your home? How do you assert your gluten-free needs in your household? Please share your experiences below and how you manage your gluten-free requirements in your home. References: Addiction Center (2018). Retrieved from https://www.addictioncenter.com/rehab-questions/how-do-i-help-a-recovering-addict-or-alcoholic/ Catassi, C. Am JClinNutr 2007; 85:160–6. A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease. Fasano, A. & Catassi, C. (2012). Celiac Disease. The New England Journal of Medicine, 367(25), 2419-2426. Groh, D., Leonard, J., Davis, M., Olson, B., & Ferrari, J. (2007). Friends, Family, and Alcohol abuse: An examination of general and alcohol-specific social support. The American Journal on Addictions 16, 49-55. doi: 10.1080/10550490601080084 Hendricks, J. (2013). Understanding inflammation. Alternative Medicine 12, 50-53. Laurin, P., Wolving, M., & Fälth-Magnusson, K. (2002). Even small amounts of gluten cause relapse in children with celiac disease. Journal of Pediatric Gastroenterology and Nutrition. 34, 26-30. Manoogian, M. M., Harter, L. M., & Denham, S. A. (2013). Storied Nature of Health Legacies in the Familial Experience of Type 2 Diabetes. In J. Koenig Kellas (Ed.) Family storytelling: Negotiating identities, teaching lessons, and making meaning (pp. 79-96). New York, NY: Routledge. McKenzie, J. (1982). Long term cholesterol response and compliance with modified fat eating styles among families at increased risk of coronary heart disease. (Doctoral Dissertation). Retrieved from ProQuest Peniamina, R. L., Bremer, P., Conner, T. S., & Mirosa, M. (2014). Understanding the needs of food-allergic adults. Qualitative Health Research, 24(7), 933-945. doi: 10.1177/1049732314539733 Rintala, T. M., Paavilainen, E., & Astedt-Kurki, P. (2013). Everyday living with diabetes described by family members of adult people with Type 1 Diabetes. International Journal of Family Medicine. doi: 10.1155/2013/967872

Celiac.com 07/12/2019 - "I think you might be reacting to gluten." How many times do you want to say that to loved ones who are suffering with familiar symptoms? Many of the people I interviewed in my "Social Aspects of Celiac Disease Survey" on Celiac.com shared that they observe signs of celiac disease or gluten sensitivity in family members, but are met with a wide range of (often negative) responses when suggesting symptoms may be gluten-related. Those of us who live with the disease, and who are well informed about the many manifestations of gluten intolerance "just know" that other family members may be reacting to gluten. We hear our family complain of indications ranging from joint pain, migraines, swelling, brain-fog, gas, bloating, back pain, leg numbness, and gastro-intestinal issues (Fasano & Flaherty, 2014), to name a few. There are actually over 200 symptoms of gluten intolerance according to Wangen (2009, p. 37). We also know how positively the body responds to a gluten-free diet and often want to share our knowledge and secret to thriving health with our family members. What kind of kinfolk would we be if we didn't? On the other hand, we don't want to become "that person" who attributes every malady to gluten (though scientific studies exist to support that premise such as work done by Fine (2003) who estimates that roughly 95 million Americans react negatively to gluten, and Fasano et al. (2015) who estimates that one third of Americans have gluten sensitivities not detectable from serological testing. Let's be clear—we're not trying to give medical advice. We are just offering our hard-earned knowledge to urge symptomatic family members to get tested. Though that, as we know may send them down a difficult path. Many respondents reported being misdiagnosed with a plethora of illnesses ranging from stomach cancer, pancreatitis, brain cancer, and IBS only to learn years later that they actually had celiac disease. In fact, it takes an average of twelve years for a person to be properly diagnosed with celiac disease (Green & Jabri, 2003) likely because doctors are not inclined to initially screen for it (Fasano & Flaherty, 2014), and because the symptoms are often similar to other diseases. We mean well when we suggest it may be gluten causing the problems for our loved ones. After all, celiac disease is a genetic disease, so it makes sense that relatives are tested once one family member is diagnosed. However, there is a phenomenon I have observed about celiac disease. The phenomenon is called "othering" referring to the tendency for family members to treat celiac disease as "your" disease, not "mine." Exploring studies that associate disease contextualizes the practice of "othering." Rohleder (2015) reports that those with HIV (even those infected with blood transfusions) are irrationally stigmatized, or "othered" because the disease is associated with "bad or immoral" behavior (p. 65). Similarly those with celiac disease cannot participate in social rituals involving gluten and are "othered" in the process. For example, a survey respondent said after being diagnosed with celiac disease: "That gluten-free diet is not for me… I don't want to be like you" and went on to explain it was because she did not want to be subjugated from rituals such as birthday cake on birthdays, pizza on movie night, or to exercise the hyper-vigilance required to avoid gluten cross-contamination. Foods are integral to sociocultural familial rituals and non-participation in established rituals (Fiese, Hammons, & Grigsby-Toussaint, 2012) causes the non-participant to be "othered." In a recent Asian study on leprosy, a skin disease, Schug (2016) reports that sufferers are required to isolate themselves in specific communities to thwart off spreading the infection to the public, and because they believe those who have it are "spiritual[ly] pollut[ed]" (p. 1). While celiac disease is not spread by infection (it is genetic) one must question whether the tendency to "other" those with celiac disease is a form of social adaptation. Schug (2016) describes the "othering" phenomena "whereby difference is recognized, constituted, and signified as negative and potentially harmful" (p. 1). Dermatitis herpetiformus the manifestation of celiac disease, on the skin causes those who have it to report wearing long sleeves and pants to cover their bodies when going out in public to prevent anyone from seeing it. I personally had to wear gloves, even in the summer because my hands were so disfigured with bad outbreaks. Though I didn't have terminology or understanding of the concept of "othering" at the time, I knew not to let anyone see the extent of my ailment, fearing being shunned, and actually hid in my home during the worst of the outbreaks, often for weeks until they subsided. I can certainly understand how family members who witnessed my suffering would "other" me, not claiming that for themselves, no matter what symptoms they may be experiencing! If our family members witness the multitude of symptoms gluten can cause, it is no wonder they want to think of it as "our" disease and not "theirs" taking strides to separate themselves and to avoid a similar diagnosis. In another study Rohrbaugh et al. (2008) found that people suffering heart problems tended to survive longer when spouses referred to the problem as "ours" versus "yours" (p. 781). Communal cooperation (Lyons et al., 1998) occurs when families discuss new circumstances required by a member with a disease by describing it as inclusive "we" talk versus exclusive "me" talk (Rohrbaugh et al., 2008). People with a disease who live in families who accept the disease as "we" or "ours" are much more likely to succeed. Successfully "coping with stressful life circumstances is a social process" (Lyons, et al., 1998, p. 582). However, the phenomenon of "othering" seems to be an initial response while inclusiveness evolves over time with familial acceptance. Though some in my study report cooperative family situations where everyone "embraced" the gluten-free diet and worked together to help the member with celiac disease, many describe how they are "othered" by immediate and extended family members, causing them personal strife, as well as a reluctance to recommend to symptomatic family members to get tested. Therefore, the social situation for this edition addresses the question, "How do we help our family members who have symptoms we attribute to gluten consumption? The first step is to understand the tendency toward "othering." When people first hear of something they fear, one coping mechanism is to protect themselves by separating from the situation (Ellis, 2018). It is human nature and a primal survival tactic. Understanding that "othering" is a normal knee-jerk reaction helps us to comprehend why people react the way they do when we are trying to be helpful. For example, one respondent in my study said she observed symptoms of gout in her uncle and inflammation in her nephews. While at a family dinner, she reminded them "her celiac disease" is a genetic disorder, and was met with the response, "What? Aren't you just being dramatic? Maybe you are following the diet to get attention?" She said, "I think you should be tested because I don't want you to develop lymphoma." Another respondent daughter diagnosed with celiac disease said her dad refuses to eat a gluten-free diet, and that her mother is sick all the time—to the point of being hospitalized, but her mother's endoscopy was inconclusive. The daughter strongly feels her mother is reacting to gluten, but since her father won't cooperate the mother/wife continues to prepare gluten-containing foods for their meals, sacrificing her health to comply with her husband's wishes. Other respondents said family members object to eliminating wheat from the diet for religious purposes, citing the Bible sanctifying wheat for human consumption (see Psalms 81:16; Psalms 147:14; Ezekiel 4:9; Joel 2:24). One person told me her friend's pediatrician told her that her son should avoid eating gluten. The mother said, "No, that's just not for him. It is too much trouble and he'll be rejected by his friends." By "othering," the disease, these scenarios illustrate how people erect a shield to protect themselves or loved ones from facing the inconveniences associated with celiac disease. There are a lot of mixed feelings about celiac disease and gluten sensitivities, especially for those who know us and witness the inconveniences it causes. For example, consider a participant in my study who reports how "accidents" make her late for everything. She said, "[I'm] on vacation with my daughter and whoops, had an accident, and then have to turn around and go back." She attempted to explain her plight to her daughter, to help her understand why she had to stop at bathrooms while driving to and from various destinations. Though the daughter exhibits symptoms of celiac disease, she refuses to be tested because she (erroneously) believes it "skips a generation." This is a convenient "othering belief" that keeps the mother's disease "hers" and not "ours." Assuming family members eventually "come around," to want to understand the cause of their symptoms, what do we say? For those members who recognize their symptoms may be associated with gluten and who earnestly want to seek a proper diagnosis, there are several tests that are emerging beyond the endoscopy and serological testing. One of particular interest is a stool test developed by Dr. Kenneth Fine. Dr. Fine is a gastroenterologist who started the Intestinal Health Institute and Enterolab to develop screening that reveals earlier stage immune responses by focusing on stool analysis rather than blood or skin tests to diagnose immune reactions to food sensitivities (Fine, 2018). Fine's (2018) new early-detection procedure identifies antibodies in the stool, before they progress to the bloodstream. Using this technique, he tested a random sampling of nearly 8,000 Americans and determined that approximately 29 percent show signs of autoimmune response to gluten. He states that customary tests of blood and skin show only later-stage disease manifestation, and that his tests can reveal early-stage immune responses (Fine, 2018). This is significant because many who have the traditional "celiac panel" blood tests, test negative for the disease (Celiac.org), possibly because the disease has not progressed enough to appear as antibodies in the blood. Consider that many doctors still believe celiac disease is rare. This may be attributed to the fact that celiac disease was not in the US Department of Health and Human Services and the National Institutes of Health's National Institute of Diabetes and Digestive and Kidney diseases before 1994 (Fasano & Flaherty, 2014, Loc 237). US doctors trained before 1994 are likely unaware of celiac disease. Therefore, accurate outcomes rely on what doctor is chosen, and what tests the doctor chooses to prescribe to obtain a diagnosis. Inconsistencies in the diagnosis process contributes to the "othering" effect because family members may undergo what they think is comprehensive testing, but may not have been properly assessed. Fine's early testing method is an exciting new development for family members who may have tested negative to customary tests, but who still exhibit symptoms. Medical diagnostic inconsistencies contribute to the "othering" phenomenon. If we felt our family members were correctly tested, we would be more at ease with a negative diagnosis, but unfortunately because of testing inconsistencies, there is often doubt about whether a family member was properly tested, even after seeking medical input. Another test is a fingertip blood test that has been developed to screen first-degree relatives for celiac disease as a first pass, according to Popp et al. (2013). It tests for IgA class and EMA antibodies, but does not test for other indicators of celiac disease such as IgA and IgG. Both, the Fine and the Jinga et al. tests are steps toward earlier detection. Research using these new testing procedures may provide the public with early-warning indicators of autoimmune responses to gluten and other food-allergens that previous serological and skin tests did not indicate (Fine, 2018). The HLA-DQ gene marker test (a cheek swab) can determine with 90% accuracy whether someone has a pre-disposition to develop celiac disease (Tollefsen, et al., 2006). Surprisingly, a study conducted by Megiorni, et al. (2008) found that 90% of European white patients carry the genetic markers for celiac disease, meaning they may develop it sometime in their lifetime. They also found that females are twice as likely to develop it than males (p. 997). We sometimes encounter resistance from family members who just don't want to have anything to do with "our" disease. This "othering" response presents some problematic social scenarios we deal with in our daily lives. With a compassionate understanding that "othering" is often an initial survival tactic, let's share ideas about how to gracefully manage these social scenarios. Together, we may be able to come up with ways to avoid being "othered" by our loved ones, and to urge them to get tests that may ultimately save their lives. Here's the scenario: You are at an extended family dinner and Aunt Martha complains about her brain fog and aching joints. You have been diagnosed for several years and know this could be a symptom of celiac disease or gluten sensitivity and since she is a blood relative, you wonder if she may have it too. What do you say to her? Your religious (symptomatic) brother cites the Bible and suggests to you that not eating wheat is sacrilegious. Your sister tells you that she doesn't want to honor the doctor's recommendations that her son (your nephew) follows a gluten-free diet because it is "too much trouble" and it will make him "socially isolated." Your mother went to her doctor to be screened for celiac disease and her tests were negative. When you asked which tests she had and you realize that your personal doctor must have been more informed, because you had a more comprehensive screening. You suspect that her doctor came to the wrong conclusion. How do you handle this? A personal note: Thank you to the Celiac.com readers who participated in my survey and interviews on the Social Aspects of Food Sensitivities. That study formed the centerpiece for my dissertation, which will become a book in the coming months (stay tuned). I am pleased to report that I finished my PhD in social science from the University of Denver. I couldn't have done it without your deep insight into the social aspects of living with this disease. Hopefully the awareness from this study and these articles will change some of the stigma associated with gluten sensitivity. Thank you! Jean References: Ellis, E. (2018). Fear and Othering (Masters thesis). Retrieved from ProQuest, LLC. (10817526). Fasano, A., & Flaherty. S. (2014). Gluten freedom. Hoboken, NJ: Wiley & Sons Inc. Fiese, B. H., Hammons, A., Grigsby-Toussaint, D. G. (2012), Family mealtimes: A contextual approach to understand childhood obesity. Economics and Human Biology, 10, 365-374. doi: 10.1016/j.ehb.2012.04.004 Fine, K. (2018). About Enterolab. Retrieved from https://www.enterolab.com Fine, K. (2003). Early diagnosis of gluten sensitivity: Before the villi are gone. Transcript of talk given to the Greater Louisville Celiac Sprue Support Group. Retrieved November 10, 2018 from https://www.enterolab.com/StaticPages/EarlyDiagnosis.aspx Green, P. H. R., & Jabri, B. (2003). Coeliac disease. The Lancet 362, 383-391. doi: 10.1016/S0140-6736(03)14027-5 Popp, A., Jinga, M., Jurcut, C., Balaban, V., Bardas, C., Laurila, K., Vasilescu, F., Ene, A., Anca, I., & Mäki, M. (2013). Fingertip rapid point-of-care test in adult case-finding in coeliac disease. Gastroenterology, 13(115), 2-5. doi: 1471-230X/12/115 Rai, T., Bruton, J., Day, S., Rowland, J., Higgs, C., & Ward, H. (2017). On becoming normalized: How are patients coping with the transformation of HIV into a chronic disease like any other? Sex Transm Infect, 93(1) A1-103. doi: 10.1136/sextrans-2017-053232.40 Rohleder, P. (2015). Othering, blame and shame when working with people living with HIV. Psychoanalytical Psychotherapy, 30(1), 62-78. doi: 10.1080/02668734.2015.1107125 Shug, G. W. (2016). Begotten of Corruption? Bioarchaeology and "othering" of leprosy in South Asia. International Journal of Paleopathylogy, 15, 1-9. doi: 10.1016/j_ijpp.2016.09.002 Tollefsen, S., Arentz-Hansen, H., Fleckenstein, B., Molberg, Ø., Ráki, M., Kwok, W., Jung, G., Lundin, K. & Sollid, L. (2006). HLA-DQ2 and DQ8 signatures of gluten T cell epitopes in celiac disease. Journal of Clinical Investigation, 116, (8), 2226-2236. doi: 10.1172/JCI27620 Wangen, S. (2009). Healthier without wheat. Seattle, WA: Innate Health Publishing.

Celiac.com 05/03/2019 (Originally published 10/08/2010) - Through some intriguing recent studies, we are learning that celiac patients share some worrisome emotional experiences that will impact their quality of life. When I queried the ICOR Celiac listserv about how people there coped with celiac disease, I got reflections of many of my own experiences in navigating the illness before and after diagnosis. From the answers sent and the research I’ve done on the topic, I’ve found that the celiac patient must contend with three major types of challenges. The first issue is directly relevant to more than a third of the celiac population. According to a 2009 study published in the journal Movement Disorders, 35% of celiac patients report a history of depression, personality changes or even psychosis. Many members mentioned having difficulty getting doctors and family to take them seriously and the aggravation and demoralization after years of searching in vain for a correct diagnosis. These are particularly problematic for those of us who have gotten a dose of emotional dysfunction along with our somatic symptoms. Maggie C. of Portland, Maine eloquently spoke of the frustration she felt because of the long delay in her own diagnosis: “I went through a succession of doctors, all of whom had me pegged as a hypochondriac. So I got to thinking of all my symptoms as just symptoms of anxiety, anger, and depression. It didn’t help that I was ALSO truly anxious and depressed. Anyway, when I went GF, the anxiety, anger, and depression went away (I like to say: “Buddha ate rice!”). So did the physical symptoms. Now I still have people thinking (and saying) that I’m a hypochondriac because I’m “so picky” about foods, but I care less about what they think.” I’m glad that Maggie (I’m not using real names here) was able to triumph over so many obstacles in getting a diagnosis; she is almost heroic in summoning the pluck to pull herself together over and over again to face the possibility of yet another self-esteem battering in the examination room. Finally she was able to get the help she had been paying for all along. I worry about the more average patients in this situation who simply don’t have the tools and make-up to do the same. And although she has a valiantly healthy perspective on people in her life who aren’t supportive, it can be taxing to anyone to put up defenses against thoughtless behavior. I can imagine that it is difficult for the doctor ignorant of advances in celiac disease diagnostic protocol to discern a difference between a very sick patient searching frantically for help and a hypochondriac who searches for reasons to be perceived as ill. Indeed, I doubt there is any difference in how those two types of patients behave. I wish this issue could be addressed by the National Institutes of Health or the Center for Disease Control since although we don’t know how many people give up looking before they find out why they are sick, the lack of awareness among physicians still appears to be a significant barrier to diagnosis. Kathy, from California, who was lucky enough to be diagnosed after only 6 months, had this to say: “My pre-diagnosis symptoms were primarily emotional. Of course, I had some gut problems, and some breathing problems too, but they were nothing compared to how emotionally disturbed I felt—all rather suddenly. It was ten years ago (!), and my normally upbeat self began experiencing black depressions and bouts of uncontrolled weeping. I just couldn’t perk up, and was feeling awful, as though a dark cloud was hovering over me. Because I had no idea what was wrong, I assumed the worst, and my doctor suggested I try an SSRI for mood. Instinctively, I felt that that was not the solution, and that medication would not help. I was afraid to eat, and lost 15 pounds. This really scared me, and emotionally it compounded the weird experiences I was having…” The second situation I’d like to talk about begins at diagnosis. Once a patient had been lucky enough to find the answer to their deteriorating health, they are told that they must inform their families that each of them may also be vulnerable to developing celiac disease. I can’t count the number of people I’ve spoken to over my eight years as a celiac patient who have related very tense encounters with immediate family members who have reacted with everything from derision to hostility in response to this important news. And these encounters occur at a time when sympathy and support is needed most. Not only do they have a very difficult diet to follow and a sick and damaged body to heal, they have often been emotionally scarred just going down an often psychically brutal road to diagnosis. Colleen of Connecticut wrote: “Communicating the possibility of inherited celiac to my siblings and children was very painful. None of them wanted to hear about it. Denial is real. The best I could do was to give them the information and know that they were in charge of their own lives. Most painful of all was my Crohn’s diagnosed daughter being unwilling to do a gluten-free trial. After years, she did, and the diet has improved her flares greatly. I don’t know whether to be glad she is finally on the wagon, or sad that it took so long, putting her in greater long term danger.” Students of mythology will remember Cassandra who was given a gift by Apollo who was quite taken with her beauty. He gave her the ability to see the future. But when she didn’t return his affections, he added the curse that nobody would believe her predictions. When she foretold a great impending tragedy, everyone ignored her tearful pleading. Just like Cassandra, we celiac patients often feel an enormous responsibility to convince our immediate family of the importance of this disease. We are told to convey the information to our children, siblings and parents so that they will know what to look out for. We then feel badly on many levels when our good intentions are rejected. Not only do we feel unsupported and abandoned in the face of our efforts to treat an often devastating illness, we are thwarted in our quest to prevent our loved ones from facing the same fate. In addition, we are hurt when our character or credibility is called into question by the people we love. And sometimes the resulting rifts in the family are never healed, which brings me to the third aspect—the social complications that arise because of the diet. I heard from one woman that separation from some family members actually raised her quality of life. Indeed, one respondent who related that although the men who would date her in spite of her difficult diet belonged to a shrinking pool, she felt that it was a good litmus test for mate suitability. Unfortunately, the social pressures put on the celiac patient can decrease the commitment to dietary compliance. A celiac disease patient who consumes gluten has a much higher risk for certain cancers, heart disease, and of course, psychological illness, letting alone the potential devastation to her/his intestinal tract and the many other autoimmune consequences. A study done of 70 Indian school children showed that 18% were non-compliant with the gluten-free diet. From the study: “Dietary restrictions have impact on child’s social activities and thus psychosocial parameters (PSC score) are better in the dietary compliant group.” In other words, kids who have better support for their diet are more compliant than those who are lacking in social support. It’s easy to see how this might apply to adults as well, especially those in care facilities where they have little to say about their food choices. Maggie, who is able to dine out, offered an excellent strategy for dealing with restaurant staff: “The key in restaurants to maintain control of the Q and A. That requires a pro-active state of mind. My shorthand: ‘X and X are probably absolutely fine, but anything, anything at all, that comes in a bottle, can or packet is suspect.’ Any half-way decent chef is happy to cooperate. When the server comes back and recites said list, I am very positive and cheerful as we check off each okay item. If something’s not okay, I just say “oops! oh well. Thanks so much for checking.” and on to the next possibility. The goal is to convey a sense that this gf stuff is really, really easy given just the littlest bit of help. Freak ‘em out with worry, and you’ll wind up with nothing but a plate of steamed vegetables.” Maggie also sets a great example when invited to a friend’s home: “When people invite me to dinner, I accept with pleasure then say they may want to rethink it when they hear how much trouble I am. This gives me a chance to assess their kitchen expertise and make my own decision about whether to push hard for meeting in a restaurant or to insist (ever so nicely) upon bringing my own food.” Others, including me, feel they are too sensitive to risk restaurant food and just order a drink or bring bottled water. Invariably, tension arises when people who are eating express discomfort when you can’t dine with them. Often, invitations decrease over time and the entire burden of social interaction must fall on the patient. Either the patient entertains, or invites others to outside events, or becomes more and more excluded. Answering my question about social invitations, one woman noted that when she wants company, it is necessary for her to do all the entertaining, and that invitations are rarely reciprocated. There is real a need to address issues of social support for celiac disease patients. We know that celiac disease is an autoimmune disorder that, because of its psychological manifestations, leaves patients especially vulnerable to social stress. And stress, of course, has a very negative impact on autoimmune patients in general. One last issue I’d like to touch on before putting this article to bed is some recent findings concerning cognitive decline in celiac patients. A study in October of 2006 published in the Archives of Neurology shows a link between dementia onset and celiac disease. Says Joseph Murray, M.D., a Mayo Clinic gastroenterologist investigator of the study, “There has been a fair amount written before about celiac disease and neurological issues like peripheral neuropathy (nerve problems causing numbness or pain) or balance problems, but this degree of brain problem—the cognitive decline we’ve found here—has not been recognized before. I was not expecting there would be so many celiac disease patients with cognitive decline.” Again, the unsinkable Maggie relates a story that is much like my own: “I was quite sick, though I didn’t know it, when I was diagnosed (biopsy, 1996). The cognitive changes were the most consequential and scary. I simply could not hold thoughts together, couldn’t reason my way through work-related problems. Had I forgotten how to do what I do? It couldn’t be...but it seemed to be. In a matter of months I went from being a model of success, in the office where I was working then, to being a failure. Having no idea why I simply couldn’t pull it together, I figured my problem was psychological: I had no respect for the executive. I stalled and covered and tried to buy time. No luck. I spent more time in the bathroom than normal, but not so much that I thought anything serious was going on. In fact I was pretty happy to have a few moments to myself and away from the pressure to do something I seemed unable to do. Ultimately and justifiably, they fired me. That was the last big project, in a free-lance business, for which I was hired…but (a big) consequence was the damage to my reputation.” Those of us who have experienced dementia in our parents and other close relatives know that the slow destruction of the brain can create paranoia, severe anxiety, depression and aggressive behavior. Dr. Murray suspects that in CD, a direct antibody attack on the brain is responsible for the dementia and other neurological manifestations of celiac patients, although it is likely a complex etiology. If the disease can cause numbness, balance disorders, migraines and problems walking, it shouldn’t surprise anyone that cognition could be similarly impacted. Kit Kellison and her husband own a rock venue in St. Louis, Missouri. She enjoys playing guitar, photographic portraiture, designing show posters and is working on her first novel. Sources: ICOR Listserv Celiac Disease Increases Risk of Neurological and Psychiatric Disorders: .  Mov Disord.  2009;24:2358-2362. Assessment of dietary compliance to Gluten Free Diet and psychosocial problems in Indian children with celiac disease Indian - Journal of Pediatrics Volume 77, Number 6, 649-654, DOI: 10.1007/s12098-010-0092-3 Cognitive impairment and celiac disease. Hu WT, Murray JA, Greenaway MC, Parisi JE, Josephs KA. Arch Neurol. 2006 Oct;63(10):1440-6