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  • Lindsay Cochrane
    Lindsay Cochrane

    A New Neurosis: Gluten-phobia

    Reviewed and edited by a celiac disease expert.

    Journal of Gluten Sensitivity Winter 2007 Issue. NOTE: This article is from a back issue of our popular subscription-only paper newsletter. Some content may be outdated.

    A New Neurosis: Gluten-phobia - Image: CC BY 2.0--zahn-i
    Caption: Image: CC BY 2.0--zahn-i

    Celiac.com 08/27/2021 - Like most celiacs, my social life was eclipsed by strict new rules following diagnosis.  At the age of 22, I could be seen, as often as not, with one hand over a pint glass and the other in a communal snack bowl.  Shortly after my 23rd birthday, however, I was informed by my specialist that I had celiac disease.  This meant a lifelong diet without wheat, rye, or barley.  “So, like, you mean no beer, bread, or pasta, right doc?” It seemed like a small freedom to sacrifice for protection from the intense discomfort I’d been experiencing.  It wasn’t until I visited a dietitian that my life was violently overtaken by one word: cross-contamination.  This new despot threatened my public and private life.

    For the following year, no door handle, remote control, or receipt was touched without a slight rise of panic.  I understand that gluten cannot be absorbed through the skin but once something is on your hands, it’s not too long until it has a chance to be ingested, be it through a brush of your nose, grabbing a snack on-the-go, or, as is a nervous behavior of mine, picking at dry bits of skin on my lips (disgusting, I know).  

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    The kitchen I shared with my non-celiac roommate soon became a center of stress and anxiety.  Each time I entered, I visualized those mischievous little protein molecules crawling on everything.  Preparing any meal involved washing my hands about five times:  1)  Opened the fridge to get out vegetables, contaminated fridge door, must wash hands; 2)  opened the drawer to get out knife to cut vegetables, contaminated drawer handle, must wash hands; etc.  My knuckles became as red and cracked as a sailor’s.  

    Nearly every day I envisioned a new way in which my food might become contaminated.  This added mile seemed to push recovery and good health further away.  The check-out counter at the grocery store; assignments from my students—zealous consumers of powder-flavored, prepackaged snacks; and who’s to say that some sandwich-loving employee at the coffee plant would always wash her or his hands after each bagel break?

    I even had anxiety attacks when my most conscientious friends and relatives cooked for me.  In retrospect, I’m grateful amicable relations survived my leery stares over the shoulders of unfortunate hosts.  My own kitchen was also turned into a tightly-controlled operation, where I made my roommate and houseguests quake at the mere thought of straying from the line.  The anxiety about people touching my food and dishes with their contaminated hands caused me to bark rules at house guests before they’d so much as taken off their shoes.

    My party-girl personality was eradicated by the new prudish and intolerant ideology.  For one thing, I could no longer consume in ignorance.  I had to know exactly what I was putting in my body (“What’s in this shot?” “Uh….I dunno…vodka and some other stuff” “Sounds good.”).  My inability to be laid back about alcohol crossed over into an inability to be laid back and fun-loving in general.  A watchful eye was forever darkening my thoughts.  I’d order a gin and soda, thinking it was safe, and my spirit would become crushed like the lime the bartender, hands covered in beer suds, squeezed onto the rim of the glass.  I began to favour staying within the regulated confines of my own home.  

    Whispers of “neurotic,” “controlling,” and “lunatic” threatened a rebellion against my methods of control.  Although my particular neurosis has yet to be categorized and defined, the obvious parallel is germaphobia.  I did some elementary research into this disorder and gained a little insight through the help of my good friend, Wikipedia,  ( It is by no means definitive but a great starting point). It lists the following characteristics of germaphobes: 

    • Obsessive washing, such as repeated hand washing.
    • Avoidance of activities that involve uncleanliness.
    • Makes well-known their unwillingness to share food, utensils, and other personal items, even when unasked.

    Any of this sound familiar?  I had to admit it.  I was gluten-phobic.  There are still times I’d like to crawl inside a gluten-proof bubble.  The benefits of being isolated from gluten seem to far outweigh the benefits of being integrated into society.  As yet, however, there is no such option for us Howard Hughes’ of the celiac world.

    The unfortunate thing for celiacs is that, to a certain extent, we have to be gluten-phobic.  Unlike ingesting germs, which may or may not make a person ill, ingesting gluten will almost definitely cause us harm.  Furthermore, many people argue that exposure to common germs and viruses is necessary to build a strong immune system, whereas the prevalent medical argument of today is that celiacs should not try to build up even a small amount of gluten tolerance.  

    Yet, if we are to continue to live in a gluten-consuming society, we must not let fear dictate our lives.  Family, friends, co-workers, and roommates must adapt to the rules we have no choice about.  Some individuals are frustratingly slow to catch on.  A few are inevitably condemned to exile.  Fortunately, there are others who can adapt to our way of life here in celiac country.  My problem was that I needed to trust these allies, to help them learn our customs by being positive, patient, and encouraging rather than through paranoia.  

    My new roommate and I are hosting a New Year’s party.  We are hoping to squeeze at least fifty inebriated friends into our cozy apartment.  When the subject of snacks was discussed with our friends, people began offering their cooking services.  One woman was titillated at the prospect of making her favorite guilty-pleasure snack: cheese whiz on toast with bacon bits.  I’d already begun fretting over errant drippings of beer foam.  Now, I pictured jovial, uninhibited, crumb-covered hands searching through cupboards, contaminating dishes and food products, leaving gluten-y traces on bottles of lotion and lipstick in the bathroom.  I became so filled with worry that I eventually broached the subject with my roommate.  

    It was difficult to voice my concerns, because I hate feeling like an inflexible militia-leader.  For the sake of my roommate, family, and friends, I don’t want to implement a regime of fear-induced adherence to strict anti-gluten measures.  I want my home to feel relaxed rather than tense.  A compromise was reached: our invitations read, “B.Y.O.B.  Snacks provided.” Yes, more than one sudsy bottle will likely overflow.  I console myself with the fact that, just as black must live with white, Christian with Hindu with Buddhist with Muslim with Jew, heterosexual with homosexual, so must we gluten-intolerant live side by side with beer-guzzling bread eaters.  When I think of my wonderful friends and relatives, I wouldn’t have it any other way.  


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    Eugenia Carvalho

    During 40 years I had all those things, I was neurotic, to slow, I was an human mistake that was born...that was what my mother made me feel. 

    When I was 7,8 years old I went to birthday party's, eat cakes like other kids. After at home, what I have eaten came out through my mouth and I felt so sick....My mother said I was a glutton, I have eated to mutch....

    With 9 years old my hair started to fall, my face hair got thicker. 

    At 46 I started gluten free before testing, so the results aren't accurate but I got better....of my legs, my hair, my anxiety, my blader, my head confusion. My genetic test says that I have three celiac genes, my daughter that has now as 2 celiac genes. 

    I'am giving up to eat on others houses or even at restaurants. It the safest option because nowone understand the consequences of the contamination...I'm going to get better the others persons have to accept that I can't eat their food...Sorry I choose to be healthy.....

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    Guest Compassion not gaslighting

    Posted

    I find it really troubling to read an article, written by someone who HAS celiac disease, that encourages people to judge AND gaslight those who may actually be at more risk of serious reaction than other people.

    If someone is allergic to peanuts, we don't accuse them of neurosis for wanting avoid the risk of hives, vomiting, or even anaphylactic shock.   Why on earth would we treat people with celiac disease/severe gluten sensitivity as though their valid concerns are figments of their imagination?   All of us have experienced well-meaning friends or family who, believing "just a tiny bit won't hurt," used a roux, breadcrumbs, or a can of Campbell's cream of mushroom soup in a dish they told us was gluten-free.  Some of us had days of diarrhea, or stomach cramps, or the horribly itchy dermatitis herpetiformis rash.  One of my celiac friends ended up in the ER.  And yes, some of us can handle a bit of cross-contamination with no noticeable symptoms -- but is that any excuse for dismissing someone else's pain?  

    Just as we non-smokers would prohibit our friends from lighting up in OUR homes, it's perfectly reasonable to declare that we don't want a food in our homes that triggers serious reactions.   

    Friends and family who actually care about us might be delighted to pre-extend the party by spending an afternoon at our homes, learning how to prepare their favorite party dishes using gluten-free ingredients.  I would happily do that for any friend with food allergies, in a heartbeat. Wouldn't you?  

    Who is really balanced here, the person who prioritizes avoidance of a painful autoimmune reaction, or the person who gaslights her?
     

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    Eugenia Carvalho

    Good night 

    I'm starting to speak about celiac now, I finally have answers afters 30 years looking for answers literally....

    Here were I live, not in E.U.A. my doctor is teaching me how to handle with the cross contamination problem, she is also celiac and even for her was dificult the diagnose, even between their pairs...

    Non celiac person aren't really aware of the nasty consequencies that DC without treatment can have, it seems a imaginary disease...not real, a simple change of diet to get healthier...

    I'm tryng to explain even to my direct family, the cares at home, the labelling, the rules to avoid contamination when everyone eat bread, the cleaning, and it as been difficult, because what they always say is:  '...that's to extreme...a bread crumb doesn't kill you...'. 

    That's my reality here. 

    In restaurants is the same issue, they are not aware, of what gluten-free meals demands....

    To all a good week...

     

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    Distressed

    First of all, I met a woman who develops "Dermatitis herpetiformis" if she so much as touches gluten.  She is vigilant with her make-up products to assure that they are not gluten containing.  I read a research paper on a new hybridization process to reduce the number of celiac disease epitomes in the plant.  The statement is that celiac disease is becoming "rampant" and something must be done to reduce its incidence.

    I have "high-anxiety" when eating out.  After 11 years of , my husband has decided to bring pizza into the house once a weak.  He is appreciative of my tolerance. You would not believe the "new protocol" that has been instituted.  The regimen must be followed in order to stave off my "gluten psychoses".  I rarely drank alcohol before this time.  Now, there is no other way to reduce the "extreme" anxiety without becoming "slightly" intoxicated.

    I do not know what to do. 🤔

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    Eugenia Carvalho

    Most of the times family doesn't help...they simply don't listen...

    the doctor can help and make a statement about the disease.....

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    Guest Bren

    I think folks are going a little hard on the writer. She just gave her own experience as she saw it, and what solutions she was willing to go through to manage her celiac disease. These are all difficult things because food, culture, family and socializing are so intertwined. We all have to decide for ourselves how we balance the need to avoid gluten with the other needs we have as people. And while I understand the comparison someone made to allergies, and while I definitely understand the difficulty imposed when you get glutened (for me the problem lingers for like two weeks and impacts my health a lot), it isn't the same as a peanut allergy (where the person can go into anaphylaxis and die). 

    My view is this, I don't think anything described in the article is a real phobia. Phobias are irrational fears and all the things you express fear around concerning gluten, are entirely rational. All of the concerns are around cross contamination, which is real and is how most celiacs end up getting glutened (its pretty easy for me to avoid accidentally eating something that contains gluten ingredients, but avoiding cross contamination has proved the major challenge). But as the writer points out: the measures to counter cross contamination are difficult things in themselves. I certainly do the hand washing. I chose to make my kitchen and household products gluten free so I don't have to worry, but the world isn't my kitchen. If I go to someone's house, or even to a store that say has a bakery in it, there is risk. 

    There is also a quality of life issue. All the measures I take to reduce the chances of gluten cross contamination also affect my quality of life. I find weeks when I am able to relax about gluten (for example a week where I know I don't have to go to work, or speak publicly: two things getting glutened impacts powerfully for me), I am so much more at ease. Those are the times I often risk going to a restaurant that has a gluten free menu (I find about 20 percent of the time at such places, something will trigger my celiac). Sometimes I end up glutened and it affects me for sure, but I am also enjoying myself, socializing and participating in culture in ways I just don't when my guard is up. 

    I think articles like this one are good. We should be hearing from more perspectives on being a celiac. And we should be open minded and compassionate when we see a person struggling to deal with celiac disease, even if they land in a different place than we do with it. This is a life long illness that warps your life in unexpected ways. It isn't reasonable to expect everyone to take the same attitude or vigilance to it. 

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    fllstuart77

    I deliver gluten food every single day...  meaning I touch bags that contain nothing but gluten in them constantly..  and i'm pretty sure the bags I'm touching must have at times gluten on them from the hands of the people that prepared the food..

    During the one year since I was diagnosed I was delivering these foods every single day..  during that 1 year my antibody levels dropped from over 100 to 10...  and only 7 points now away from normal..   

    so if my antibody levels dropped to almost normal range already while constantly being around gluten daily...  then you people are just going nuts over nothing

     

     

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    fllstuart77
    On 9/7/2021 at 11:49 PM, Guest Bren said:

    Those are the times I often risk going to a restaurant that has a gluten free menu

     

    you can't eat at restaurants from gluten free menus....

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    Scott Adams
    24 minutes ago, fllstuart77 said:

    so if my antibody levels dropped to almost normal range already while constantly being around gluten daily...  then you people are just going nuts over nothing

    It's important to keep in mind that not every person with celiac disease has the same level of sensitivity, or the same reaction to the same level of gluten. Some people are super sensitive and may have dermatitis herpetiformis (very itchy skin blisters) that can last for weeks and be triggered by tiny amount of gluten, while others may not notice anything even if they ate a wheat bagel. So your comment here applies to yourself, but does not apply to everyone with celiac disease or gluten sensitivity.

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    fllstuart77

    alright

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  • About Me

    Lindsay Cochrane

    Lindsay Cochrane is an ESL teacher currently re-residing in Toronto after a 1.2 year hiatus in Asia as a teacher at ECY Kid’s Land Foreign Language School, in Anyang City, Kyeonggi do, South Korea. She enjoys teaching, reading, writing, keeping abreast of current events, studying French, volunteering, spending time with family and friends, dancing (badly), singing karaoke (even worse), and putting on her pajamas as early as possible.


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