Jennifer Slack

Overcoming Gluten Free Social Isolation: Part I Communication

by Jennifer Slack on February 25th, 2011


Jennifer Leeson Gluten Free Works

gluten free cooking friendsThe phone rings…it’s my friend calling to see if I would like to come over to dinner.  Little does she know that I have just been diagnosed with Celiac disease and I’m now nervous about eating at other people’s homes... 

I’m still learning what to eat and how to read labels.  I feel my heart beat increase, and my palms start to sweat.  “What is this weird feeling,” I ask myself.  I feel like I’m going to panic…and all over a social invitation.  “What’s wrong with me, this shouldn’t be a big deal.  It never was before, I’ve always just done what I wanted.”  Oh yeah, I remind myself, it’s because I don’t know if I will be able to eat if I go over.  Maybe I just shouldn’t go.  Maybe I should just stay home and eat the few foods I know are “safe.”  But, I miss my friends.  They are important to me.  I really want to go.  So, now what do I do? 

Does this situation seem familiar to you?  It does to me because I had this happen on numerous occassions, especially when newly diagnosed.  Every once-in-a-while, it still happens, but I’m no longer afraid of it. 

Let’s take the above scenario and layout an example conversation of what to say and do to overcome the social anxiety that has arisen. 

First, take a deep breath.  Maybe, take three…and try to clear your mind.  Remember, a good friend will generally do their best to understand and help you out…as you would likely do the same for them.

Next, thank your friend for the invitation.  Ask, if they have a moment, for you to explain your current situation.  Then you can say something like this, “Remember when I told you I was having some tests done due to digestive issues.” Response, “Yes.” You, “Well, I got my results back and I found out that I have an autoimmune disease called  Celiac.  I had no idea what this was until my Dr. explained that it means my body cannot tolerate the protein gluten, which is found in wheat, rye and barley.  There are significant health consequences that can occur if I continue to eat these foods, so I am having to change my entire diet and can’t eat the same foods I always have.  So, while I would love to accept your invitation, I would need to have a bit more involvement in the dinner plan, or at least need to know if you are preparing something that I can’t eat, so that I can bring something with me and still come.  Can we talk about what you will be serving for dinner? ”

Friend, “Sure…” possibly with some other questions and curiosity.  “We were planning on having spaghetti.  This is the sauce we are using and the spices we have.” 

You, “Spaghetti will be fine.  I can prepare my own noodles and bring them with me.  I looked up the sauce you are using, and it will be fine, however the garlic seasoning that you have is not okay. Would it be okay if I brought over a substitute garlic salt that is on my safe list?” 

Friend, “Sure, that will be great.”

You, “Also, since I am still learning myself, would it be okay with you if I helped out in the kitchen that day, just to help make sure that we keep gluten containing foods seperate from gluten free foods.  It will be fun to cook together and you will be helping me learn how to eat.  I can also bring over a couple of gluten free items so you can taste them too.  It would be fun for me to share my new experiences with you.”

Friend, “Sounds good!  I look forward to having dinner together.”

You, “Great! See you on  Friday!”

Of course there may be more conversation about other parts of the dinner and the disease, but you get the gist.  Once you start talking about it openly, you will be amazed at how receptive most people are.  Don’t expect them to know or understand unless you tell them.  Also, be patient with them, as they will have to learn just as you are having to learn.  But, the most important thing to remember is, if you don’t face it and get out there. it will never get easier. Practice and communication are the keys to empowering yourself and others to help you on your journey to a healthier, happier you.

-------------------------- Author Information: Jennifer Leeson, Denver, CO Denver Gluten-free Examiner at Examiner.com Jennifer is a Licensed Clinical Social Worker and an expert on changing negative emotions, thoughts, and behaviors. After being diagnosed with Celiac Disease last October, she learned there was more to transforming her life around food beyond knowing what to eat and what not to eat. There were unexpected social, emotional, and behavioral challenges that arose. Since learning how to cope with these obstacles herself, she has begun teaching others how to cope effectively with the barriers that interfere with successfully changing one’s entire lifestyle around food. You can reach Jennifer at her e-mail address.


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6 Responses to “Overcoming Gluten Free Social Isolation: Part I Communication”

  1. Michelle says:

    Luckily I had (and still have) a steady boyfriend when I was diagnosed. He tries to understand and reads all the ingredients but we still have little mishaps.
    It totally killed my social life (being in college everyone wants pizza) and if there’s any free food it seems to be donuts and cookies around here. And there are subways on campus and dunkin donuts and I feel like i can’t even go to the dining hall (the only gluten free option they have is this gross gf pizza that’s usually a few days old) and it’s frustrating when you see they have such a huge selection of brownies and cakes but then for gf people they don’t have ANY dessert. It feels so limiting. I try to explain and they just give me a blank stare and when i try to clarify they say things like “You can’t eat ANYTHING?!” and it just makes it that much more frustrating. It’s like, you don’t need to tell me that, I know how hard it is. But kids eat in class and I worry about their crumbs, people don’t think. Especially when it comes to eating by computers.
    Home wasn’t much better, my mom totally bent backwards to make it work (she’s used to reading labels, my father had a heart problem so she’s used to that) but my step-father makes sandwiches and leaves the crumbs EVERYWHERE all over the counter so it feels like nothing is safe and he totally didn’t get the whole sharing utensils and he’d accidentally eat my gf food instead of the food with gluten in it leaving me without food. He’d say things like “what’s a crumb gonna do?” people just don’t get it. They think I’m being obsessive and worry too much, but I don’t want to lose a whole day to the bathroom because someone or me was careless.
    Sorry, I’ve been diagnosed for less than a year. It’s tough and frustrating especially as a newbie at this.

  2. Lila says:

    I have to agree with both of you. I have had a lot of problems getting my significant other to “get it”- my friends typically come here to eat and we have a great GF restaurant here but it is a bit pricey – I understand why – the ingredients can be expensive as well as the fact it’s a specialty restaurant. Dewey it is socially isolating when you can’t be one of the gang but you have to protect yourself and I have found who my truly good friends are as John mentioned. This is a great website and if you cook at all you will find there are easy recipes to try. I am not trying to plug my blog but I follow a blog that’s listed on it regarding GF tips and she has step by step guides on her recipes – the chicken parmesan is awesome. http://sjogrensdisease-ihavewhat.blogspot.com/

  3. Catherine says:

    Hi there. First of all, asking to go and cook dinner with the host sounds a bit crazy if you have a really busy life – kind of defeats the purpose to be invited over – or maybe that’s good only for the 1st time if it’s a really good friend. I have just explained how no utensils or pots and pans can be shared or crumbs can even touch my food and trust they’ll respect it. I also know that going out might cause cross-contamination but that’s a risk I’m willing to take or else I won’t have a life. Over time, my friends learn all the grueling details and are ok following them when they’re with me. I also take a really light attitude when I have to ask a million questions at a restaurant. Those not familiar with going out to me find it amazing and more amusing than anything. A lot has to do with attitude. I know it’s really hard – I have in-laws and a gigantic extended family in the town where I live and it took 4 years of them saying ‘you’re too much – just have a small piece of cake – nothing will happen.’ Finally, when I almost flipped out on the one sister-in-law who wouldn’t let it drop, I sent her a full Q&A about Celiac and how I didn’t want to die of the cancers my parents did because they never got their celiac diagnosed. Her response was, ‘thanks for the information, but I just don’t know what to do because you can’t eat ANYTHING’. Since then, I realized honestly who I can spend time with and who I can’t. I just make sure I eat before I go to family events or random parties. It’s true, real friends get it but we, as celiacs, also have to be patient with them if they forget sometimes.

  4. John Libonati John Libonati says:

    Hi Dewey,

    My friends joked at first. I think it’s natural when people encounter something different. Some of them still razz me, but I joke a lot too, so I guess it’s to be expected. What I did find is my good friends keep me safe and even make sure they have gf food for me at parties. My dating experiences actually improved after I went gluten free, probably because I lost 25 lbs, became stronger and just looked and felt healthier. I look younger now than I did 10 years ago. Now, I don’t know how old you are, but hang in there. The healthier you get, the more everything will improve, people will want to be around you…and you’ll find you can be choosier about who you date! ;)

    -John

  5. Dewey says:

    This story depicts ONE possible scenario of how someone MIGHT respond. Celiac Disease for me has been a defining test of who my friends really are. Most of them treated me like it was something contagious – some thought it was a funny and used it as an opportunity to serve up jokes about it at my expense. Fortunately, a few were mature enough and cared enough to understand and be supportive. The worst part by far, has been dating experiences. While I almost always got second and third dates before being diagnosed, it NEVER happened after the diagnosis. I finally gave up dating all together. While I feel much better being gluten free, I have found it to be EXTREMELY socially limiting.

  6. Marcy says:

    In our group of friends… 3 couples are gluten free and this has become a bone of contention with some of the other friends. Until recently most of our socializing has been in each others homes (potluck) or at restaurants. The 3 of us (couples) have taken on the burden of hosting because we know what’s in our food. The other couples seem to be really put out that they’re no longer asked to host or we bring our own food if they do host. We’ve been labeled “the Gluten-ites” and been called obsessive due to our diligence in cooking/eating GF. Not everyone “gets it”!

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