Why Does Celiac Disease Turn Some People Into Heartless Jerks?

family doesn't believe in celiac

Compassion: a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering.

Jerk: a contemptibly naive, fatuous, foolish, or inconsequential person.

Given the two options above, would you rather be considered a) a passionate person or b) a jerk? The answer is simple, right?

Yet we see it everyday…in all walks of life…people who choose to be total turds. We see it in politics. We see it in the news. We see it in sports. And boy oh boy, do we see it in the celiac community. I’ve gotten more emails than I care to remember over the years from my fellow celiacs whose friends or even worse, family members, treat them like sh*t, simply because they have a disease that is caused and controlled by food.

Case in point is the following email, which I received this week.

Dear Glutendude,

My family doesn’t understand and doesn’t want to be educated about celiac disease. People die young in my family and wonder why…I don’t want to ostracize myself but I’m hurt at their ignorance. Intestinal cancer, diabetes, high blood pressure and many other diseases run in my family. I am recently diagnosed with celiac and I’m relieved to have an answer after so much pain, but celiac disease is staring me in the eye and people I love won’t even think about getting tested.

My grandpa always had a big hard belly and died at 57. His sister died in her late thirties from small intestine cancer.

I love my family but they have actually gone as far as to tell me something was GF that actually wasn’t just “to see if I could tell”. And that is just the half of it. I just don’t know what to do. I don’t know how to forgive them and I don’t know if I can ever trust them again.

Have you ever heard about family reacting like this? Any tips on getting them to listen?

Thanks in advance,
The Sad Celiac

Sadly yes…I’ve heard of this far too often. Why would someone poison you “just to see” if you get sick? I wish I had an answer. I cannot fathom your own family doing this to you and I hurt for you. To make matters worse, people who lack compassion also lack the desire to change their ways. They never see that the problem may be them. So you are in for a struggle unless you can somehow get through to them.

I don’t know how old you are…but if you’re over 18, I’d suggest getting away. If you’re under 18, I’d suggest some kind of family counseling. In the meantime, perhaps you can connect with some fellow celiacs in your area and/or age group on my forums.

And heck…send them this blog post. Maybe they’ll get it through their thick skulls that not only do you have a lifelong disease, but perhaps they to do.

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27 thoughts on “Why Does Celiac Disease Turn Some People Into Heartless Jerks?”

  1. I feel your pain. Oh how I feel it. My Grandfather died at 65 from pancreatic cancer. My great grandmother died of breast cancer. My father has many of the same symptoms I do – plus he is diabetic and had cancer. Will he get tested? NOPE. Won’t even consider it. It INFURIATES me. All we can do is focus on ourselves and our own healing. We can lead the horse to water…..

  2. My family has gotten better, but I’ve had several fights with a few of them over the last couple years. Those fights have left me angry, emotionally spent, and deeply sad that they won’t even make the effort to try to learn – or at the bare minimum – try to understand what I go through. And even worse, that my son has been subjected to it as well, just in the form of being fed things he’s not supposed to have. My dad is probably the most compassionate, but during a phone conversation recently, he asked me if I was ever going to try eating gluten again to see if my tolerance has built back up. I’ve explained how celiac works time and time again. Sigh….

    Hang in there Sad Celiac. Just try to remember that it’s a foreign concept to most people and it may take some time for them to wrap their heads around it. Education (frequently repeated) goes a long way. That said, do NOT tolerate people trying to poison you on purpose. Do whatever you have to to protect your health. Find celiac forums online like Gluten Dude’s or a local support group. Things will never be perfect and there will probably always be a few that doubt celiac is real, but it will get better.

      1. Christine Dalesandro

        From another perspective. I have had a friend for 25 years. She has always had ” stomach issues” but then 3 years ago was diagnosed with celiacs. We have things in common, like enjoying walking and hiking and recently grandbabies!
        My issue is that the conversation is always about celiac and her food issues. I have empathy for her and I am a nurse so I realize it’s not made up or in her head- but I am not sure what she wants me to say. Basically, when she talks about it , I don’t say anything .
        I seriously have thought about just asking what she is wanting me to do or say- but feel like that might upset her.
        I am up for suggestions.
        Thanks

  3. Seems commonplace that family members don’t want to know or don’t care.

    In my case, my dad and mom both have symptoms, yet refuse to get tested. My sister finally got tested after years of persuasion and was positive.

    Now that my sister is positive, do you think she has any interest in going glutten free? Nope!

    Also have gotten sick at several family dinners as I still got gluttened from glutten free items. They don’t know enough to care about cross contamination.

    I really wonder if it is the glutten free fad that makes the whole thing a joke and not treated seriously like peanut allergies are.

    1. if only peanut allergies were treated seriously…. We face the same kind of reactions and lack of compassion about our peanut/ dairy/egg/etc allergies as we do with our gluten intolerance.

  4. I was diagnosed at 57, 8 years ago. My parents about 20 years older than I am refused to be tested. “Their doctor said they were too old”! Now my dad has colon cancer…my mother’s mother always had GI problems. My father’s side various cancers including stomach and colon. My brother and sister are GF, but I doubt celiac GF. My daughter and granddaughter refuse to be tested and act like it’s my fault if they have a problem.
    I have both genes.
    I guess people would rather suffer the consequences than prevent serious illness.
    It took me over 20 years to finally get a diagnosis! I have osteoporosis, fibromyalgia, chronic fatigue, multiple food sensitivities, a history of migraines, joint problems and my gut has never normalized. I weigh 85 lbs at 5’3″ and am always worried about losing even more weight if I have another weeks long GI episode. Not to mention the isolation and not vacationing because I am terrified of being exposed to gluten.
    It infuriates me that people take this disease so lightly.

  5. I feel your pain…I associate with most of my family from afar now because of crap like that. I’m no longer welcome at my mother’s house because she “doesn’t want to be liable if you get sick eating something at my house”. Yes those were her exact words and they’re burned into my memory now. I get envious whenever I read about how some families embrace it and go out of their way to accommodate someone so they can be a part of holidays and family celebrations…I’ll never know what that’s like. I make my own holiday celebrations now, but it will never be like it was when I was a kid and I mourn that every time a holiday rolls around.

  6. I am new here, my first comment, wanna say thanks GF Dude and Mrs Dude. I’ve learned much so far and has helped me feel less alone. That comment from Nancy made me cry, about not being welcome for holidays and such. I never had a relationship with my own family and I know how hard the holidays can be alone. I used to gather other friends who were alone to celebrate, I always cooked everything which is safe, but exhausting. Now I’m engaged and visiting his family for holidays. They are not the most welcoming, considerate people. Last year his mother jumped on the GF fad and started sharing ideas with me and products she had found. I took it as a possible bonding experience and was excited to get to know her. By the time the holidays came, all that was out the door. She had GF flour in her pantry but choose to use all wheat. When I asked what was safe for me she laughed about how she should have used the GF flour but forgot about it. No apologies, nothing. She has 4 kids with spouses and grandchildren and no one else in the family is GF. There was nothing safe for me besides the raw veggie plate. My fiance, bless him, is rather protective of my digestion having seen me get very sick from exposure and was upset, but what could we do…the only thing said to me during dinner was a couple of mentions about how sorry they all felt that I couldn’t eat anything. Both times in a condescending tone. It would have been nice to at least move past that and talk about current life events but, nope. I held back tears all night. Why is it that when you have a food allergy all of a sudden that’s all most people talk about with you? Besides having to ask about ingredients, my allergy is the last thing I want to talk about. I am more than just my food allergy!

  7. I feel fortunate to have a more supportive family but sympathize with many of the above comments and the sentiments of the author of the letter. I don’t make a big deal about my need to be gluten free – I can miss a meal and deal with being hungry if it means I get to be with family and friends. I’m easy – it’s only food. I can do without food that makes me ill and wait until I get home to eat something I know won’t hurt me. But the comments of others can, and do, often hurt as much as the gluten containing food. I think the comments are born of FEAR. My guess is the family members have seen the difference going GF made for you and they are scared to death that they should do it too. I think people are really, really attached to eating the things they want to eat. It’s really hard for me to understand, especially with my “it’s only food” mindset. But I do think that there are people for whom giving up the comfort of bread, pizza, cake etc is so terrifying. They’d rather stay sick than change what they eat. I think it’s nuts, but also think that the fear keeping them from considering gluten is making them sick is what causes them to lash out and to try to prove you wrong. All those positive changes in you? If that’s what going gluten free could so for them, it’s a no-brainer, right? But not if they’re that scared of making changes to what they eat. Stay away from them, protect yourself, but maybe feel a little sorry for them too.

  8. As for the poor person who is the subject of the article, I’ll say maybe forgive them for their ignorance…but NEVER trust them again. Either they will begin to understand when you bring your own foods and refuse to eat anything of theirs, or they will not; either way you will be safer. As for the rest of us, I feel bad for all of us who have gone to a doctor and been diagnosed with an illness, not just an illness, but an incurable illness which has the ability to cause so many of our other illnesses, whose family and friends couldn’t care less about it all. I’ve always kept my friends circle kind of small, but all but my best friend have disappeared, I guess because they don’t want to be bothered. Bothered with what? I don’t know, because it is my responsibility to pick what I ingest, not theirs. As for family, the only reaction I got from the few I am close to was, “oh, wow, ok” and in the case of my father, my remaining living parent, complete indifference. Equally as annoying is when you are out someplace and the stupid runs deep-I am starting to believe nobody trains employees any more, they just throw them out there and they sink or swim; it really makes me terrified of eating out at most places for fear of contamination. I asked for the brownie off the gluten free menu at outback; I’d had it before, it came still wrapped in its plastic, accompanied by the ice cream and fudge sauce. This time I asked, and the waitress said she would go check to see if they had it (she had NO IDEA what I was talking about). She comes back, and the cook (I refuse to call him a chef) told her to let me know THEY DON’T HAVE GLUTEN FREE, BUT THEY HAVE LOW CALORIE. Now, what the hell good is that to me? I just said no thanks and cancelled my order. But everyone, please watch out, because apparently even those who SHOULD know are clueless and could make us sick!

  9. I definitely have empathy for the writer of the email. Only because I know how hard it is to get family members to understand the true seriousness of the disease. I am very fortunate in that my family really does try to accommodate my food requirements, but they just really don’t have a clue how hard it is to prepare gluten free when others are eating gluten containing foods. And, they don’t understand that one tiny crumb is all it takes. But, they try, and they would never try to gluten me for the heck of it, so I can only imagine how that would make a person feel. All I can say is forgive their ignorance, and bring your own foods to any gatherings. Don’t trust others who don’t know, or care, how to prepare truly gluten free food. This kind of attitude is another reason for anyone with Celiac to be a little bit angry when anyone tries to make a joke about eating gluten free. It just makes it so the world will not take our illness seriously. I have had so many people say to me they just couldn’t give up bread. I did not choose to give up bread. I just chose to live.

  10. Because they were that way before they knew about Celiac Disease, having no empathy to begin with and limited acceptance of new ideas.

  11. Don’t take it so seriously. My friends don’t treat me with kid gloves. They’ll make fun of the disease if i’m not having a beer but it’s all good. Family isn’t keen on learning too much. My dad bought some of the bread once and just said it tasted like shit. Ha ha. It’s only food everyone. It’s a fairly tame disease relative to what a lot of people go through.

    1. Having a light heart and being willing to laugh at yourself are great traits, and I’m glad that so far that celiac “fairly tame” for you- really I am. But it’s simply not that way for the majority of people and for some- like my husband- it has been life altering and nearly lethal. Before diagnosis he was so sick he was hospitalized and on life support. Even with great care his health since has been a roller coaster ride. The comments above and many more throughout this blog are filled with stories of cancers, miscarriages, heart disease, and early deaths, so we’re far from the only ones with serious problems. Celiac is a significant disease with lifelong consequences and potential for severe effects. Should folks with celiac live their lives in terror? No. But taking it seriously and living carefully are both necessary and wise. Telling people not to do so is at best unkind, and at worst irresponsible.

      1. I’m so glad that you responded with this Eileen. I was starting to think that maybe there was some misunderstandings here. This seems to be a safe place for people with Celiac to communicate their experiences with others in a similar boat. In my first post I talked about my soon-to-be mother-in-law and family holidays. I don’t go to events expecting to be fed, and I have no problem missing a meal as someone had written, but the holiday I had mentioned was a surprise because there had been GF food before that holiday so I wasn’t as prepared as I could have been. I didn’t question her or anything. I simply said that was okay, I understand, and made a mental note to bring my own food next time. But not being considered during food preparation is hurtful. I completely forgive her and I don’t expect her to go out of her way for me, but I would do so for her, and my feelings are a little hurt, and I thought people sharing these stories makes those who have experienced this feel less alone. I’m happy for the people who have caring family members or who don’t suffer severe side effects from contamination, but some of us do not have it so lucky. It is a big deal when family members forget or purposefully give you something they know you are allergic to. That shows a lack of caring and consideration. It is hurtful. It doesn’t mean that the people sharing their experience doesn’t forgive and move on. It just means they feel hurt and need a safe place to let it off their chest. I’m thankful for this forum.

    2. I lie here reading this comment while being administered morphine in hospital because of a mistake at a restaurant…Yeah it’s tame.

      I have a joke with my friends as well. But they know it’s serious

  12. My mother-in-law kept lying to me about what was in the food, because she didn’t believe I was a celiac with a whole host of food allergies. Once she fed me soup with a chicken broth base and noodles. She very carefully dipped out my portion so I didn’t get any noodles. Within an hour not only was my stomach in bad shape my muscles were screaming at me from being fed chicken. That was the last time I ate her food. I brought my own food frozen and nuked it, causing her to act like a martyr because i wouldn’t eat her food. And that was the last time I went to her house.

    One expects strangers and maybe even friends to act like food allergies are all about them, but when it’s family, the cut is deep.

  13. As a mother of a small child who was recently at a birthday party (with his own cake for the birthday boy etc) and told … “here just have some of this your mother will never know”. As a family who opened our home up to a friend in need for months on end with the only request being ” please no gluten in our home”… to discover that while we were at work, he was kicking back in our home enjoying a veritable feast of gluten and contaminating everything. As a health professional who has worked in the same hospital for years and my fellows laugh at me because they have never once seen me eat at work – as there is nothing, not in canteen, not a social events etc etc. I hear ya’ll. I am glad you found a safe place to vent. I found GD was the most sane and wonderful vent receiver in the world. This doesn’t make me bitter or sad.. or joyless or unforgiving. It just means that on one of ‘those’ days it is great to scream WTF at a man who has heard it all before. It does hurt. It is frightening (when you have taken years to claw back your health) We will get over it. I feel I am a much more mindful person about everything now… I am also really good at reading the scene regarding people’s attitudes. So here’s to us… to becoming empowered; to tupperware and all those other awesome and cool options we now have. And to the worlds best ever rant receiver…Thank you GD

  14. I think it boils down to one simple concept: respect.

    If you have respect for someone, you don’t mock them. You don’t tease them about something that physically or mentally harms them.

    When you have family/friends do that, it’s not so much that the words hurt (although they do), but their thoughtlessness that burns into your brain.

    Would this be the same treatment you give an alocholic? A diabetic?
    If not, what contempt have I merited for amusement.
    If so, it speaks more of your deficit of character than my inability to consume gluten.

  15. Hi,
    To DL34 you must not have complications like enamel off teeth, gingivitis, severe arthritis, CFS, skin so dry that no one will ever see again, IBS, loss of memory……..I sound whiny but for many it goes way beyond food. Yes it’s only food and life revolves around food.
    Ok, things will be rough at first, I agree with dude, if u can get away, do so.
    Not one person in my family wants to learn about celiac and it’s been 7 years. I had many friends, I now have 1 who I don’t see? My sister in law and I were best of friends. We are still friends but the love is gone.you are not alone. I think of this more than anything.
    I say to my husband I need someone to talk to, send info, find recipes. He is gluten free but only wants info on a need to know basis saying it stresses him out. I stopped talking about celiac with him about 2 months ago. My mother becomes to upset and everything I have she says she had or had had(NOT). Now in the beginning my father studied everything about celiac he could, down to cellular level. We never talk about it.
    If u need a friend e mail me.
    You will have so many questions but slowly it just gets to the new normal. My friend says she wants her old Kim back?????
    I should say my family are loving, wonderful people. I really think it’s fear. The friends I don’t understand.
    Again feel free to contact me. You can let me know through this forum.
    IT GETS BETTER, IT DOES!

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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