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  • Kit Kellison
    Kit Kellison

    The Psychological Impact of Celiac Disease

    Reviewed and edited by a celiac disease expert.

      Journal of Gluten Sensitivity Autumn 2010 Issue. NOTE: This article is from a back issue of our popular subscription-only paper newsletter. Some content may be outdated.


    Caption: Image: CC--Hartwig HKD

    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.

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    I can totally relate to this article: Going through a list of physicians, problems with my husband ( whose line of work involved inviting clients to dinner  and I was expected to be present also), fatigue, balance problems, muscle cramps, developing other autoimmune diseases, etc. . I have experienced an ever declining  social life, derision, labeling as a hypochondriac, neurological problems such as problems with balance, osteoporosis (10 fractures in the last 3 years!), and a nasty syndrome known as Mount Reback syndrome ( a form of dyskinesia, whose gene overlaps that of celiac disease: a double threat). 

    I do not  care about the social  aspects because I have a few real friends who have been there for me, and that is what counts. The rest have proven exactly who they are. My husband finally understood this was a real problem and supported me until his death.. 

    My family has been accepting about their risks. They have all been tested: One son, one granddaughter and my brother  are all celiac. They have had the advantage of early diagnosis and are doing well. 

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    I have had one invitation to dinner in 10 years since my diagnosis. I have only one restaurant and one item on their menu that I can eat with confidence in our city. I had a doctor say, “Don’t you cheat every now and then on your diet?” I was horrified that he would say that! He has no idea what cheating entails!!! For me, it involves a migraine and a trip to the emergency room for help. I told him so. Part of my problem is that I also cannot eat rice or corn two of the main alternatives on a gluten free diet. I also can’t eat onions or garlic. Makes eating out impossible. Makes travel impossible unless I camp and can cook my own meals. So, international travel is out. Makes socializing difficult too. I also can’t drive at night. I have neuropathy and dizziness. All of this contributes to an isolated life. 

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    There's also the career impact on top of the social. 

    I have been an airline pilot since 25, diagnosed with Celiac Disease at 37, and now I am not bidding for the Captain position (once I bid for Captain my seniority goes to the bottom of the list based on position) due to being afraid of not having control of my monthly schedule.  Every month I have to bid for my schedule and my current seniority affords me the schedule that allows me to pack food safely for 1 and 2 days, all the while avoiding certain international destinations, and timing the arrivals so I can go back to my car to grab another cooler once I return back to the United States.  I have to pack 3 square meals a day with ice packs in order to do my job and make a living, because I too cannot eat out.  To be frank, there's NO options at airports or around airports on layovers, not to mention there's hardly enough time to venture out while on layovers.

    Not bidding for the Captain upgrade is a BIG financial impact and I have been taking to my union for relief from the company and some kind of a game plan.  But this has been going on since last November and there hasn't even been a meeting yet.  The last thing I want or need is anxiety every 30 days when I have to bid for my schedule.  And then once my schedule comes out having to worry about burning up sick time because I am unable to fly certain trips due to work length or international destinations.

    Right now, social impacts of Celiac Disease is the least of my concerns.  The impact Celiac has on my career is tenfold.

    Thanks for bringing more awareness to the public about the "just don't eat gluten" impact.

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    I have not eaten out in a year, few celiac safe places owned by celiacs in a huge city but that is a 100mile round trip. I for the most part meal prep 3-4 days in advance all the time, and take a cooler that can hold 3-6 meals in them on trips (fitness meal prep coolers). Longer trips involve loading a mini fridge on a wheelchair ramp on my car and a chef kit of a griddle, induction cook top, and nordicware microwave cookware.
    I most of my friends and family ran away when they learned I was sick with this issue even though it is genetic and I am adopted, I am isolated like a leper. Does not help that before my diagnosis the ataxia and brain issues caused me to get confused and lash out at everyone. It was as mentioned in the article like dementia. I had looping thoughts, I would try to think about something, get stuck and have it loop over and over like a broken record leaving me banging my head on a wall to make it stop. Losing my ability to do computer programing, good portion of my math skills, and a second language I was learning...It destroyed my life, dreams, and made the college classes I had taken pointless.

    I have built my new life around my issues, I also got left with allergies to corn , whey, and intolerance to lactose, peanuts, soy, pancreas issues not allowing me to eat carbs or digest meat without pig pancreas enzymes. And Ulcerative Colitis to top it off.
    I started paleo diet with keto macros and from my last scopes am doing great.
    Job wise I enjoy cooking and have to for life, I hope to one day open a Paleo Based food truck free of gluten, corn ,dairy. Been running the menu at tent set ups at farmers markets for a few years for side income. Heck been doing gluten free baked goods for the last 6 years and sell about a order a week.

    Now days I do spend almost all my free time cooking, talking my only friends I have left online (long distance), and trying to get by while being isolated living alone.

     

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    Gluten free since diagnosis 2007. Militant about it and have not eaten out in 13 yrs. Clean pill camera and colonoscopy. Clear blood work for 12 yrs after first year gluten-free. Panic attacks have stopped by 2014 helped by clearing my body of benzodiazepines previously prescribed before and after diagnosis and balancing my hashimotos. My biggest issue is Neuritis in ligaments, tendons and muscles damage in a car accident 1994. It manifested as soon as I went gluten free. Found my folic acid had crashed and was not being treated. Because I am practically bedridden and cannot tolerate exercise I suffer isolation and depression. Lost all social activity relying on family for interaction. Also experience multiple food intolerances that have shown some healing over the years. Developed Trictophilia from anxiety as well. My centrimere blood marker is slightly elevated a 2 but not high enough for diagnosis of any specific autoimmune disease. Naproxyn and Gabapentin keep my pain tolerable but does not control it enough to function in the world. I remember how happy I was to get diagnosed. I had high hopes of getting my life back but actually I am more disabled now than ever in my life. I am concerned about my future especially with my senior years.

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    6 hours ago, Guest Jrm said:

    I have had one invitation to dinner in 10 years since my diagnosis. I have only one restaurant and one item on their menu that I can eat with confidence in our city. I had a doctor say, “Don’t you cheat every now and then on your diet?” I was horrified that he would say that! He has no idea what cheating entails!!! For me, it involves a migraine and a trip to the emergency room for help. I told him so. Part of my problem is that I also cannot eat rice or corn two of the main alternatives on a gluten free diet. I also can’t eat onions or garlic. Makes eating out impossible. Makes travel impossible unless I camp and can cook my own meals. So, international travel is out. Makes socializing difficult too. I also can’t drive at night. I have neuropathy and dizziness. All of this contributes to an isolated life. 

    I am sorry that your doctor is not celiac-savvy.  

    Glad to find another celiac who still (despite a healed small intestine) can not tolerate onion or garlic!  I am also grain free because I feel better avoiding all grains and it helps to constellations my blood sugar. 

    Socially, I have joined groups that do not require eating.  I picked up my old high school band instrument and joined a community band.  I meet friends for coffee or I dine with them and just order a drink.  I set up walking or biking dates.   We travel taking an ice chest or camp in an RV. Lots of planning, but it can be done.  

    I wish you the best!  

     

     

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    On 5/7/2019 at 10:41 AM, Ennis_TX said:

    I for the most part meal prep 3-4 days in advance all the time, and take a cooler that can hold 3-6 meals in them on trips (fitness meal prep coolers). Longer trips involve loading a mini fridge on a wheelchair ramp on my car and a chef kit of a griddle, induction cook top, and nordicware microwave cookware.

    Job wise I enjoy cooking and have to for life, I hope to one day open a Paleo Based food truck free of gluten, corn ,dairy.
     

    I can relate to a lot of what you said.  I cannot leave the house without planning out my meals.  No longer do I eat out, way too many times I've gotten sick at the hands of others.

    Best of luck with the "Food Truck" business, I wish there were more like you out there!  Funny thing, I really enjoy smoking meat and I often think about one day opening up a simple and safe gluten-free BBQ eatery for all to enjoy, and mostly make it safe place for those with our disease to enjoy life safely with friends and family.

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    1 hour ago, Mr. Pep'r said:

    I can relate to a lot of what you said.  I cannot leave the house without planning out my meals.  No longer do I eat out, way too many times I've gotten sick at the hands of others.

    Best of luck with the "Food Truck" business, I wish there were more like you out there!  Funny thing, I really enjoy smoking meat and I often think about one day opening up a simple and safe gluten-free BBQ eatery for all to enjoy, and mostly make it safe place for those with our disease to enjoy life safely with friends and family.

    Funny thing, there is a place just outside my city, that is a small BBQ place. They are all gluten free and never even mention it anywhere. Their daughter who works there is Celiac so the family makes sure no gluten is in the building. >.< My issue is the BBQ sauce they use contains corn and it is in everything and I am allergic to that lol.
    I also considered BBQ, but my town has 5 BBQ places that do catering -_-  So I would be out of luck there so I went with the concept of a truck that does Paleo with Stir Fry and another menu for burgers with my own Gluten-Free Bun recipe and sweet potato fries, along with perhaps offering breakfast like my Omelet on a stick or breakfast bowls. Right now I am considering another option to start in to raise funds.
    Sort of funny how our bodies rebled on us due to an issue with food proteins yet ironically our life starts to revolve food to keep us safe and oddly enough in some becomes a passion.

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    On 5/8/2019 at 3:17 AM, pikakegirl said:

    Gluten free since diagnosis 2007. Militant about it and have not eaten out in 13 yrs. Clean pill camera and colonoscopy. Clear blood work for 12 yrs after first year gluten-free. Panic attacks have stopped by 2014 helped by clearing my body of benzodiazepines previously prescribed before and after diagnosis and balancing my hashimotos. My biggest issue is Neuritis in ligaments, tendons and muscles damage in a car accident 1994. It manifested as soon as I went gluten free. Found my folic acid had crashed and was not being treated. Because I am practically bedridden and cannot tolerate exercise I suffer isolation and depression. Lost all social activity relying on family for interaction. Also experience multiple food intolerances that have shown some healing over the years. Developed Trictophilia from anxiety as well. My centrimere blood marker is slightly elevated a 2 but not high enough for diagnosis of any specific autoimmune disease. Naproxyn and Gabapentin keep my pain tolerable but does not control it enough to function in the world. I remember how happy I was to get diagnosed. I had high hopes of getting my life back but actually I am more disabled now than ever in my life. I am concerned about my future especially with my senior years.

    I totally relate to your happiness at diagnosis but then instead become more and more disabled.  I've said this before, at least with cancer there's either remission or death. celiac disease is a life long sentence with umpteen co-problems.  I'm 59yo and my 87yo mum is better off physically and mentally than me.

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    Travel has been the hardest.  I have to pack so many snacks and depending on where we are going, full meal for my daughter.  She so desperately wants to travel, but we have found that many smaller cities or towns just can't accommodate a gluten-free diet.  Of course, those are the places my daughter wants to visit the most to experience the culture.  I often am so frustrated, concerned and stressed, I can just image how she feels (thought she won't show her emotions on this issue.)

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    Oh yes, the travel issues.  It breaks my heart to think how my life virtually screamed to a halt when diagnosed 5yrs ago.  My best friend and had I vowed to travel to a different country each year.  Of course I couldn't go, but she does still.  I miss everything, milestone parties, weddings, visiting new family babies, even coffee dates.  I'm virtually a hermit with my little dog.  I stupidly go online shopping for lovely clothes/shoes and makeup, I adore new makeup. But it all gets put away in cupboards and drawers, never used.  I think deep down I believe my dire situation may one day improve and I hold onto that hope.  If not, I have lots of lovely things to wear to my doctors appointment,  my only outing now.  Yet to the layman, being celiac means, "oh, you can't eat bread, yeh?".  If only it were that easy hey?  

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  • About Me

    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.

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