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    You're Not Crazy: Coping with Celiac Disease & Gluten Sensitivity

    Melody Stiles, MSW, LCSW, MAC, LCAC
    • Journal of Gluten Sensitivity Summer 2012 Issue

    You're Not Crazy: Coping with Celiac Disease & Gluten Sensitivity
    Caption: Image: CC--YJ Jeon

    Celiac.com 12/29/2017 - Do you remember the moment when you were diagnosed with celiac disease or gluten sensitivity? Most people I talk to have it etched in their memory. After all, the information is life transforming. Yet, I doubt if most of us understood the enormity of the information until time passed and we had the opportunity to actually fully understand what it meant besides the gluten free diet (GFD).

    Along with having to learn that gluten is everywhere, we also learn that having to eat differently is, to put it mildly, upsetting. In fact, the psychological impact of living with celiac disease or gluten sensitivity usually involves depression and anxiety. There are other emotional responses as well; these include grief and, for some, trauma (depending upon how long it took for a diagnosis and how sick the person became).

    Celiac disease or gluten sensitivity is such a difficult illness to live with because of the social and cultural fallout we are forced to deal with as a result of having to be on the gluten-free diet. We quickly learn how difficult it is to negotiate the world having to live on the gluten-free diet.

    Let's start with how much food is involved in normal social situations: a family gathering, a party, going out to eat for any meal, a wedding, and for kids of all ages, school, camp, etc. Until it happens to you, it is very difficult to comprehend the enormity of the change and its limiting impact. Change is something people do not like, even if that change is good. And we most certainly do not like to change the way we eat. Just talk to anyone who has ever been on a diet. Unfortunately for those of us with celiac disease or gluten sensitivity, the diet is not optional. And, it's hard; so hard in fact that some people cheat. And ultimately, they pay.

    Culturally, food is hugely important. Food is almost always involved in every occasion that involves spending time with people, dating, any rites of passage including bridal showers, baby showers, weddings, and birthday parties. And there are the holiday gatherings. Every single time you are invited to attend one of these events, you have to stop and think about whether it's worth it to attend. If you go you will either have to eat before you go, take your own food or ask the hostess to make special arrangements. You not only feel like a burden upon those in your social and family circles, but you find yourself stressed out by the mere prospect.

    And the social consequences are enormous. The very people life you have always relied upon for support, begin to drift. You find yourself shocked and saddened by the reactions and behavior of family and friends who you never suspected of being unable to handle change in you. It's hard not to take personally, but their reaction is not about you. They most likely react this way because your life is now too restrictive for them. Just like you, they want to be able to go wherever they want to eat, serve whatever they want to serve and not have to think about it twice. But unlike you, they still can. And this inevitably leads to conflict. Then your feelings get hurt and they are frustrated and you simply stop getting together as often because, in the end, it's just easier.

    I believe that is why people with this disease enjoy socializing with others who are also living on the gluten-free diet. We are trying to avoid the social isolation, loneliness, and shame. We want to forget our fear of the unknown, feeling like we no longer fit in, as if we are lost, or in denial and maybe needing more information. In a nutshell, we feel crazy. Because we cannot do something most people can do: eat normally. These feelings are only a portion of what I have learned about people who are forced to live on the gluten-free diet experience. Parents of children impacted with celiac disease or gluten sensitivity share these feelings as well.

    In the end, you need to give yourself time to fully understand the gluten-free diet, and in order to keep yourself safe, become vigilant to all of the hidden places gluten can hide. We do know that those who stay on the gluten-free diet and avoid gluten as much as possible feel better emotionally much more quickly than those who do not. I cannot underestimate the need to consult a good dietician. You need to find others living on the gluten-free diet; they can often be found through local support groups. Some of us might find it helpful to talk with a therapist who is familiar with celiac disease, gluten sensitivity or chronic illness in general.

    Lastly, you also need to remind yourself that you cannot change how your body reacts to gluten. And you cannot change other people. What you can change is your perception and attempt to understand that while we may require a different diet to stay safe and healthy, those who do not have our diagnoses do not. Our experience of life, then, is changed. We have had change forced upon us. Our friends and family have not. The only thing different to them is that we are telling them we can't eat the way we used to. I think the sooner we accept these facts, the sooner those around us will as well.

    You are not crazy. The way you have felt since the day all of this began for you is perfectly normal. Yes, some people have serious depression in addition to celiac disease and gluten sensitivity. This requires treatment in addition to the gluten free diet. For some, the depression and anxiety are alleviated over time because of the gluten-free diet and subsequent healing. In the end, this is a difficult but doable road and you are in good company.

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    Guest Barbara

    Posted

    I have had celiac disease for 20 years. Most of the time, things are ok. If I have a problem, it is dealing with the "foodies" in my family. One in particular always talks about the "delicious" food he has eaten, at home or in a restaurant, has made or is/ was making. This is recipe level detail. I have asked others to please explain that this is hurtful. Guy can't help himself. I can deal with everything but this. I can eat the same menu in restaurants, my limited menu at home ( am on FODMAP diet too). When he is around we always eat out. Oh, yes a plug for Legal Seafood which has true gluten free items on its menu. These are adaptations of regular items. Restaurant chain on East Coast. Love going there. Therefore , insights in this article are very helpful. It's the only article of its type I have seen. Thanks for writing it. Even now, I do have some of feelings described.

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    Guest Lori

    Posted

    The article is great. My feeling exactly. The picture heading the article is disturbing.

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    Guest Laura

    Posted

    It is a truly devastating disease both emotionally and physically. First came severe malnutrition with its associated diseases and near death event with resulting surgery. These too are factors to consider.

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    Guest Cindy

    Posted

    What a totally depressing article. Living with celiac is difficult and yes, one has to make continuous investigated decisions when dining out, traveling and attending many social functions. I can understand that it can be depressing, however knowledge and education is the key as well as speaking up for yourself. I have had celiac nearly 8 years and have traveled the world without seriously getting ill. Do I get upset when I have to send my meal back because someone has messed up and everyone else is done eating? Heck yes! But it doesn't ruin my outing as I have learned to be specific but to expect error. If your friends have dropped you because of celiac, then they truly were not friends. Friends are supportive and make adaptations. Yes, I still have some who think a bite won't hurt me, I just keep educating. All of my friends ask about restaurants suitable to me and dishes I can have. And if I choose to take my own food to make it easier, then so what? Maybe I am just fortunate, but the article would have been more helpful in stressing adaptability and acceptance.

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    Guest Thomme

    Posted

    This is one of the more important articles I have read on coping with a diagnosis requiring a GFD. Thank you.

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    Guest Paul

    Posted

    Well written article, I felt much better after reading this.

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    Guest Julie Mackay

    Posted

    Hi, wow I've just today been to my GP explaining my overwhelming anxiety and panic attacks. I'm just on 4 years diagnosed coeliac but at 57 year old I lived on oxys antidepressants tri monthly B12 injections for severe vitamin B12 deficiency, etc. for 10 years before changing GP's and instantly diagnosed. Sadly though the permanent damage, severe chronic peripheral neuropathy, IBS, oesophageal infections, liver damage severely damaged tooth enamel, tinnitus, aged a gazillion years lol and unable to work, have all left me a physical and mental train wreck. I can totally relate to your story, I've lost all friends and half my family.. nobody even bothers to invite me now and I don't even care. I'm to see a psychologist (3rd try) next week to try to sort through my issues. But my question is how can I sort through or resolve an issue /problem that's never ever going to go away. My go asked if I have suicidal thoughts and no I don't but I'm dammed sure I don't want to live like this.

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    Guest Elisabeth Gerritsen

    Posted

    Thanks for this article. I will print it out to show if needed, because people find me weird and I am avoiding going out and gatherings because I am not only a celiac but I also have a lactose intolerance. I shop on internet at a gluten free web shop and most of the time all goes well. But this time I bought fresh made pastries for the 31st of December (Dutch treat) who should be gluten- and lactose free. Poor me, I spent all night and the half of next day in the bathroom! So not a happy New Year for me. This didn't happen for the first time. So now I am afraid to buy anything home made. I live like a hermit now and that is no fun. I am really depressed. What to do? My dietitian call me when she has a new celiac patient, for advice. And she is supposed to be the expert!

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    Guest Cynthia Savitt

    Posted

    Thank you so much for writing this article. I've had celiac disease for 10 years and it never gets any easier because of the social/cultural/ethnic traditions associated with food. Food is the ultimate social experience. I never cheated, except on occasion with french fries, but I'd ask the restaurant when they last changed the oil in the fryer. Occasionally I would end up on the toilet, but no serious reaction until this past year when I mistakenly ate several cookies that I thought were gluten-free and weren't. I became violently ill within a few hours and never felt so sick in my entire life. I almost called an ambulance to take me to the emergency dept., but I didn't think I could withstand the trip to the hospital, since I was wretching every 15 minutes. Since then, I'm completely paranoid about eating out, whether it's a restaurant or a friend's house. I find myself reading labels on the food I buy 2 and 3 times, even though I know it's gluten-free. I never want to feel that sick again.

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