Celiac Disease can be extremely isolating

I’ve lived with my diagnosis of celiac disease for over a year now and it seems like just yesterday when I could eat all my favorite gluten-filled treats at will, but it also seems like a hundred years ago. There are a few time a year, usually either events or gatherings I associate with food (especially cake, etc), when I miss gluten. Usually I only miss it when it’s flaunted in front of me. (The smell of fresh bread… yummm)

I’m not the type that insists that gluten never be around me because, face it, that’s not fair at all to the other people in my life. I feel that I owe them the courtesy of not being a prima donna about things that might cause an emotional twinge but don’t really harm me.  So I do have gluten around me fairly regularly.

When my relationship with food changed, it caused a ripple effect that also affected my friendships, my family relationships and my perceptions of anything dealing with food. Now, I’m not at all oblivious to the fact that my being gluten-free causes extra hassle and thought on the part of everyone. I get that, really I do. But it’s a medical necessity, not a whim. Trust me, NO ONE would be fanatically gluten-free by choice as it’s time-consuming, difficult and expensive. And isolating.

Going grocery shopping takes three times as long because I have to inspect every item every time and most items are completely off limits now. Going to meetings where food is served means I either need to make special arrangements, bring my own food or starve. Going to professional conferences is the same. Going out to eat means only eating at restaurants that can provide gluten-free options and reasonable assurances of caring about cross-contamination. Going to eat at a friend or family member’s house means either having someone willing to cook gluten-free or having to bring my own food.

I’ll be completely honest – many, if not most, people will not make any effort toward accommodation at all. All sorts of reasons are stated but, emotionally, it can hit me as a statement of  “you’re not worth extra effort.” It’s really painful, actually. I have a few good friends who understand and will often go out of their way to make dishes I can eat or check out restaurants ahead of time for me. I love those friends.

When it’s anyone else, including family, I am forced to point out that I still have to be gluten-free and offer suggestions or ask how they want to handle my food restrictions. It pushes all my “don’t be a demanding guest” buttons to even say something but it’s that or starve but I have to.

Sometimes I’m faced with a gathering (centered around food, as most seem to be), the response to my inquiry ends up being “bring something you can eat and we’ll all eat what I serve”. While this does solve the issue of my not starving, it emotionally feels like being sent to the corner to eat my gruel and told not to bother anyone else. I don’t feel like a part of the group, instead I feel like I’m there on sufferance and only barely tolerated. It’s not worth the effort to try to make something I can have on this one day, even when options are pretty easy to come by.

When this happens with family, it’s especially distressing.

Last year, I was really upset by a situation like this, centered around a family gathering. I was even more upset because it seemed very hard to get my point across to even my husband. He’s supportive of me, especially since he’s seen what gluten does to me, but since it’s his family, I felt like I was putting him in the middle. There were a lot of justifications put forth, many of which may be true, for my being forced to bring my own food but that doesn’t help the emotional backlash. I did not feel welcome and it didn’t improve with being there. I watched everyone else eat the multitude of other dishes. I watched them eat dessert and sweet treats. I ate my casserole and drank some water. It felt like being on the outside looking in and I felt alone.

I swore, in the aftermath of this event, that I wouldn’t do this again. No matter how much I want to be liked. No matter how much I want to feel part of the family, it wasn’t worth it. In fact, I told several friends to remind me that I wasn’t going down this path again.

Today the prelude to this event started for this year. Complete with an invitation stating the serving of cake or cupcakes (verbotin unless made gluten-free). When I inquired into the menu and pointed out the cakes could be made with the now widely-available gluten-free mixes, I was told that what was done last year worked well. I could just bring a small main dish and dessert for myself.

Being the pleaser I often am, I accepted this until I was relating the tale to one of the friends who I’d told about last year’s event. Thank heaven for good friends – she reminded me that I swore not to do this again. She’s right. I don’t need to feel this way when I have other choices. Because I truly can feel more alone in a crowd than when I’m actually alone, I’m better off excusing myself and finding something I can do where this isolation isn’t shoved in my face.

Having strict dietary restrictions is an extremely isolating thing. Today I’m feeling very alone.

12 comments to Celiac Disease can be extremely isolating

  • I’m so sorry you’re feeling alone today. You are anything but alone! It does get easier, I promise!
    It took awhile for a few people to realize I’m gluten free and what that means, but once they got used to it and understood it they’ve been incredibly accomodating. I’m lucky that my family and friends are so accomodating. They’ve made special dishes or asked what I can have. I often volunteer to bring something or make something if the offer, just to take the burden off of them.

    Instead of feeling isolated, try to think that you’re special (because you are!). I ate a different dinner tonight on a work trip than anyone else, but I didn’t feel isolated – I felt special. I got a great tasting dish that I loved that was gluten free. With time, I’ve become more comfortable asking and planning for gluten free meal options for me. Hopefully you will too and it will get easier for you.

    • Maura

      Thanks, Lauren.

      I do hope it gets better. Maybe it’s sort of like an ex-smoker who misses the social aspects of things far more than the actual item. I may also be suffering from echoes of my family views on the rules of being a good hostess and have expectations I need to let go of.

      I just think I’m going to do what I can to not be more miserable, which is to not put myself in a situation where I will feel so isolated.

      I have some great friends and nice co-workers that try hard for me. Including ones who see me playing martyr and call me on it!

  • Maura,

    I completely feel your pain. I’ve been there and still doing it. In fact I have to prepare an entire dinner for my family, in addition to bringing a dish, to the church tomorrow night. There will be plenty of comments about why I’m bringing extra food and not sharing with everyone, forget the fact that there will be plenty there for others to eat. It is extremely isolating at times. I can’t say it gets better as I’ve yet to see that. However, this is way we HAVE to eat. If family and friends don’t like it, well…*shrugs*

    Keep standing up for yourself. This is a necessity for you and you are WORTH the time and effort it takes to prepare a meal. Just keep reminding yourself of that; I do and most days it helps. 🙂

    • Maura

      Thanks, Sharyn.

      I’m glad to know it’s not just me. There’s always that little voice of doubt in the back of my head (oddly enough, it sounds a whole lot like my grandmother) that questions whether I’m just being “high maintenance” or something. But you’re right – I need to stand up for myself. There’s just not a lot of choice unless I want to be miserable and that’s not a way to gather with family either.

      I hope it gets better for you, too.

  • Maura, I think all of your feelings are valid. I have had celiac almost 20 years and I still feel that way sometimes. Yes it is problematic at restaurants (I still don’t eat out much) but our families and close friends should understand. I do think your husband’s family has a very cold attitude…they just don’t get it and it is hurtful. I dealt with things like that at first but when my child was diagnosed we started staying home for holidays; I didn’t want her to feel what I did. I remember one of my closest friends inviting us over for New Years eve and only having Subway sandwiches. I had only been talking about gluten-free for a year and she forgot??? It hurts when peopletreat us this way. Sometimes we feel like lepers. (Celiac colony anyone…I’ll bring the margueritas)
    For me being diagnosed with celiac was similar to the time I had my house destroyed in a flood. You find out who your friends are. Some are kind and compassionate. Some are only concerned with not disrupting their enjoyment and daily lives. You cannot pick your family.
    We still spend all of our holidays alone, with our adult children only. We love it. No drama, no problems, no gluten.
    If you are anywhere near central Illinois at Easter we are having a Mexican Fiesta..gluten free.
    hugs, Gloria

    • Maura

      Thanks for the sympathy, Gloria!

      I like for my youngest son (he’s ten) to be able to see his cousins and such but I’ve decided it’s not a requirement that I be there if I feel unwelcome. My husband is very supportive and (I think) annoyed on my behalf as well as sad that I don’t feel welcome but I think he also struggles with what to do and why his family members are doing this. I feel badly if I put him in the middle. It’s all a big muddle!

      Of course, that’s why I decided the easiest thing was to just excuse myself. Thank you so much for the invitation to your lovely Easter Fiesta! If I was anywhere nearby, I might take you up on that but I’m in the Seattle area. Maybe I’ll have some lovely (GF) Mexican food and salute you from afar!

      Hey – Midnight Margueritas at the Celiac Colony — I’m IN!

      Hugs – thank you again for the support. It’s nice to know that others have these feelings, too.

  • Maura,
    Every dish at your husbands family party does not have to suddenly cecome GF, but they could make an effort to have a few of them be GF. Send them my blog haha, I specialize in naturally gf food from the grocery store.We know it is not rocket science anymore.
    I just don’t think your husband and son should go without you and you have a holiday alone. Talk about isolation!!! Don’t be a martyr, start your own traditions. When my kids got older they knew that some of the relatives did not treat mom so well…and I’m not just talking food here. As adults they have chosen not to be around that part of the family.
    My daughter was not diagnosed until she was 14. You never know about your son in the future…what is he learning from all this? How sad. Gloria

    • Maura

      They’re actually going to have this gathering on Saturday instead which works okay because I have a First Aid class most of the day Saturday. I’m not available anyway. Sunday we’ll do something of our own as a family and not worry about it. So I’ll still have the actual holiday with the menfolk. I’ll have to see what happens with future gatherings and play it by ear.

      I love your blog, by the way 🙂

      I’m good – much happier now that I made the choice to not participate. Family gatherings should be a pleasure, not an onerous duty, after all.

  • Hi Maura;
    Just now reading your post and wanted to let you know that I think most of us who have to live gluten free feel exactly as you do at times. Most days it doesn’t matter how others feel, but there are times when it is isolating! My kids, husband, and BFF are the most supportive which helps during those isolating times, but I too avoid some situations that just aren’t worth it. I once attended a birthday party with close friends where one of the husbands sat eating a piece of beautiful fondant birthday cake and with each bite he looked at me and said, “mmmmm, gluten…see me eat gluten” seriously, he really did that. I brushed it off as ignorance, and it was very uncomfortable…for everyone actually. After the party I had calls from a few friends who apologized for him. And I really believe he thought it a choice of mine not to enjoy his wife’s birthday cake…and it’s not a choice, it’s my life.

    Great post…just know you are validated in that many others feel the same way and keep pushing through, because in the end, it’s our health that matters.

    Cheers to you and the upcoming holiday’s…enjoy as you feel most comfortable.
    And I love the idea of Margarita’s…a personal favorite. : >


    • Maura

      Hi Mary,

      Thanks for stopping by and making me feel less alone. I’m pretty happy most of the time but there are just some times that get to me. The story of your friend’s husband is bad – I would have been uncomfortable, too.

      I had a nice get-together with my MIL and FIL yesterday and it was lovely. We tried an recipe that’s one of my husband’s favorites with gf flour and it was delicious. I think my FIL ate more of the gf cupcakes than the regular cake! Hopefully there will be little “fallout” from next weekend but I guess we’ll see…

      Yummm – margaritas!!!

      I really appreciate the support!

      – Maura

  • Dru

    Yes, you are being high maintenance. I don’t even have to know you to understand this, because your blog post makes it very obvious. However, I’m giving you some leeway because you are still in the early stage after your diagnosis. You’re still in denial; but it’s time you moved on to the next stage – acceptance. I have never asked anyone to cook special for me. I have always taken a dish to family or friend gatherings – including dessert dishes. Then I set about enjoying every minute of it. I don’t go pout in a corner about “poor little me,” and think that life is unfair. I nearly always get compliments for the dishes I bring, which are free to share with everyone, with a smiling admonishment not to use a different serving utensil other than the one I brought. After many years of being GF, my friends now attempt to make a dish for me, but I still always bring “my share” for the gathering. If friends ask why I’m bringing a special dish (they usually don’t – why would they, unless I bring it up for some reason, and I usually don’t), I gladly tell them, but not in a self-pitying way, instead with a short simple answer, then moving on to something else. This usually results in genuine curiousity about the condition, which I am more than willing to provide answers for. I eat at restaurants, and if I don’t see anything which I would consider safe, I order a simple salad with lemons to squeeze for dressing. There are now plenty of places that try to accomodate being GF (I hope that’s the case for you, since I don’t know where you live), and usually if I suggest a place that I know I can eat that will do GF, my friends don’t resent it, they encourage it, because they’d rather do that than see me being cheerful with a lettuce and tomato salad. My friends don’t resent me, but perhaps they would have if I had taken your attitude. There are always jerks like the guy who taunted you, but life is full of jerks. You don’t have cancer, or some other form of bad disease, which would most assuredly isolate you and put you center stage, as you seem to wish. Instead you have been given a condition (not a disease, despite what it’s called) that allows you to avoid getting dreadful diseases and conditions, simply by not eating gluten. So don’t isolate yourself even more by staying home from gatherings. All this will do is put a punctuation mark on your “look at me, cater to me” attitude. So throw off your shroud, try to see things from your friends’ point of view, and perhaps they will eventually also try to see things from your point of view.

    • Maura

      Interesting point of view, Dru. I’ll certainly consider your points.

      I think, though, in many ways it smacks of the other extreme (at least to me) which a different sort of martyrdom and that doesn’t sit well with me either. I don’t think I would be long term happy to live my life under the assumption that no one needs to take anyone’s needs but their own into account.

      I’m glad you’ve found an attitude and methodology that works for you but I don’t think it’s one that would sit well with me. I’m also sorry that, from one blog post, you’re deciding I’m basically a selfish, high-maintenance person because I’d appreciate some consideration from those closest to me.

      Thank you for offering another point of view, though.