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.
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.
- 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