Celiac Disease and Your Social Life

A Recent Experience

For the first time ever, my husband and I left our kids home alone overnight.  Two nights to be exact.  We escaped to the beach where we shared a huge house with seven other couples.  We had a great time with our friends, and friends they truly are.  They understand celiac disease.  Many of them knew me when I was diagnosed and saw how weak and thin I was.  These are not people who say, “Oh come on, a little bit can’t hurt you.”  And yet, I got glutened. As understanding as they are, as kind as they were to prepare gluten-free food, they are simply not used to being as careful as I have to be to avoid contamination.

I’m pretty sure it happened during dinner Friday night.  I took a dessert for that meal which consisted of fixings for soft tacos.   I made a taco salad.  The meat was prepared with individual spices, and the lettuce, tomato, cheese, and chips were all gluten free.  I served myself first before the flour tortillas were opened.  I was quite confident that all was fine.  Maybe it was, but at some point I ingested gluten.

Saturday morning I was riding in the car with my husband.  We were headed into town to pick up a few groceries.  Suddenly, my stomach felt upset and I grew tired.  Very tired.  That’s always my signal that I’ve gotten glutened.  My husband picked up one thing then headed back to the house.  I dragged myself up to my bed where I  slept for four hours and dreamed that I was so tired I couldn’t stay awake.  My digestive symptoms weren’t too bad, thankfully, but I felt in a fog the rest of the day.  I prepared the main course that night, but still had to be careful because wheat bread and pasta were being served.  As you can imagine, I was extremely cautious, and everything seemed to go okay with that meal.

Going back a few months, I remember when we were asked to join this group at the beach.  My first response was, “No.  It will be too hard to eat.”  But who wants their social life to be controlled by celiac disease?  I didn’t, so we decided to go.  A few days before the trip I got really nervous.  “How will I manage with so many people sharing one kitchen?”  Then I told myself, “Just be careful, and it will be fine.” 

I was careful.  It wasn’t fine.  It’s not anyone’s fault.  My friends did all I could ask them to do.    When I was feeling well, I greatly enjoyed the time with my husband and friends, but always hanging in the back of my mind was the thought that I had to be careful.  I had to avoid any contamination.

Questions

The question is, if I’m given the opportunity to do something like that again, will I do it?  I’ll have to weigh the benefits versus the risk and that nagging concern.  Looking back on that weekend, was the enjoyment and refreshment worth the worry and the auto immune reaction?  Was it worth the intestinal damage that inevitably took place inside my body? 

I asked my husband what he thought.  He said we should do it again, but not in the same way.  If it was worth it to me, I would need to prepare my meals ahead of time and take a microwave or other countertop oven for reheating.  I think I could live with that.  It’s not the same as sharing the same meal with my friends, but it beats not being with them at all.

What Do You Think?

Food is a huge part of so many social activities.  It is inevitable that having celiac disease will affect one’s social life.  For many people, that’s the hardest part of dealing with the disease.  How does it affect you?  How do you handle social situations?  With the holidays approaching, your experience might help someone.




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Comments

  1. Anonymous says:

    Well you do have to weigh,how sick you can get. but many people do share their kitchens with gluten and seem to do fine.

    when my uncle goes on vacation, he makes meals on microwavable/freezable plates and put them in a foodsaver bag (vaccum seal bag) and freezes the meal. then we he gets to his destination he defrosts and microwaves meals for everyone. He swears that it tastes just as good as home cooked, and not like leftovers. I haven't had the same good luck as he does when I reheat inside those bags, but it might be worth a try for you.

    if you bring it in the bag, and cook it in the bag, then the only risk is if gluten gets in the air or something when it's on your plate.

  2. DMarie says:

    This is difficult. I am struggling with this right now. Our church has an annual Progressive Dinner. I love Progressive Dinners – but have not been in a church that does them since I went GF.

    But – I am also balancing my potential enjoyment with how much of a hassle it will be to prepare my own food and take it. I am fairly new at my church – and even if I were not – I just think it is too much for a non-GF person to have to figure out how to feed me – even if I gave them directions on what not to do. Bottom line – no one will be as careful as I will be.

    Right now I am planning on going – but I still have mixed feelings. I want to find out what is being served so I can make like food to take – because I don't want to feel so conspicuous with what I am eating.

    I have to say that I went to a dessert gathering last week. I took my own little cupcake. And I did feel a little conspicuous. I didn't know the people well (it was a newcomers thing at my pastor and his wife's house) – and I wonder if people are looking at me and thinking that I am just so picky that I pack my own food and how snobby is that!

    And I have to admit that when an invite came in the mail to a Christmas party for my husbands work – my heart just sank. That just seems way to diffult to handle – and I hate eating before and then having to bypass all food at functions. I would rather not go. Fortunately, it doesn't appear my husband is interested in attending – because for me that does seem too much of a hassle.

  3. The Chatty Housewife says:

    I go to tons of group functions and take my own food. One of the best ways to not feel left out is to figure out head of time what the exact menu is, and then make gluten free versions of those items to bring along for yourself.

  4. This is the first time I have heard what some of the reactions to gluten are. I have in the distant past eaten something and then slept for hours like I couldn't wake up. This was before people even heard of Celiac. I will check into it further. I've blamed my symptoms and allergies on candida. I feel the best avoiding gluten, sugar and dairy. And yes it is a social dilemna. Thank you for posting this.

  5. Just Call Me Zippy says:

    Wow! I'm glad that I'm not alone in dreading occasions that require shared food prep. My sweet neighbor offered to make me a "gluten free" oriental sauce. I'm not sure she understands how easily cross-contamination can occur (or all the places gluen hides in ingredients) so I declined. I don't want to be so paranoid, but I don't want to be sick because of someone's "bread-crumbed" cutting board either. It's nice to see I'm not the only one that dreads social situations with well-meaning friends.

  6. GF Gidget says:

    I am always the dork who brings her own meal in a lunch box. Even if a food is technically gluten free, if I don't prepare it or am not 100% comfortable with the prep space, I will not eat it. Some people may not understand, but I bet your friends will. You can't let Celiac rule your life. You are strong, capable, and one heck of a gluten free homemaker! Take charge and win!

  7. Gluten Free Gal says:

    I attend quite a few dinners and potlucks and I always just take my own food. It is easier when you are with people who just accept that this is what you do. I know it isn't ideal, but it keeps me safe.

  8. Dee/reddirtramblings says:

    This is one of the best posts I've read on the subject. Food does play a big part of our lives, and we don't want to be left out, but we don't want to be sick. I've gone to things where all was fine and to others where it wasn't. I still go, but I often take my own food and when dealing with friends, we treat the kitchen like it is kosher, only instead of separating meat and dairy, we keep the foods and utensils for wheat and GF separate. Thank you for your honest post.~~Dee

  9. I'm really glad you posted this. I'm still feeling my way through learning how to manage my celiac – and I'll be honest, the whole idea of just trusting someone else to cook for me kinda scares me. I have my husband's huge company party coming up soon, and you would think it would be fine – my father in law is the chef at the reception hall. But since I KNOW his view of dealing with allergies is "just shake it off, pick it off, or just one won't hurt" view I'm actually MORE worried. He wants to test out a few gluten free "ideas" he has – and expects a willing tester.

    Sigh.

    Are the holidays almost over?

  10. Elizabeth says:

    Thanks for your honest post. Although I am not the Celiac in my family, my husband and 3 daughters are. We deal with some food-related sensory issues as well.

    When we have family/friends over, everyone eats GF food or you go out to eat and don't bring it into the house. If I have a craving for a certain food that I can't make GF, I go out to eat with friends or on my own ("Mommy alone time," hee hee!)

    When we go places, we carry snacks/foods that can be easily made/reheated. Depending on the occasion, sometimes I find out what's being served and sometimes I don't.

    My kids are very forthcoming about what they can and can't eat, especially my 7 year old. Their friends know that they have to carry a cupcake to a birthday party, or extra snacks on a playdate, and most parents are sensitive to our situation.

    But even so, there are many well-meaning ppl out there who try to feed our kids. We ask that they not accomodate our food needs, but to allow us to treat them to some fabulous gluten-free food from our kitchen. Yes, it's more work for me, but then I know my family has safe food to eat.

    I hope you try again, Linda. You are a woman of many ideas, and I believe you can learn to balance friends and food — and then tell us all your secrets! ;)

  11. gfe--gluten free easily says:

    I will never stop socializing. I do a variety of things depending on the situation. I never feel guilty about it and never care about being conspicuous. I figure I'm educating as I go. I try to be assertive, yet kind in my education. There are a few instances where I just don't take part though. For example, if Mr. GFE's family is eating at a restaurant where the only gluten-free food is a salad of iceberg lettuce (in a gluten-filled kitchen at that), I say no thanks. But, I go to tea with my girlfriends. I order the chicken salad on salad and take my own sweet treat with me (last time, it was a large gingerbread cookie, which went great with tea). I've done this several times with no issues.

    I'm super sensitive though and I did just have an almost identical reaction to yours, Linda. I ate a product made from one of the new mainstream products that is supposed to be gf and within an hour I was very foggy and ended up taking a 3-hour nap. Then I was foggy and tired the rest of the weekend. I'm convinced the 20 ppm standard is NOT acceptable to some of us (which of course makes me question if it's okay for anyone).

    Back in September, we had a wonderful experience at a B&B on the way to hubby's college reunion until we left after breakfast. That was a different reaction … the classic one. With the help of Immodium I got throught that one with some disappearances and not eating anything for hours. I'm convinced that they put toast on my plate and then took it off. Nothing was visible, but they could have slid the eggs over or put the contaminated eggs on a new plate.

    The different reactions always interests me because other times I've had to excuse myself to vomit immediately and sometimes I have flu-type reactions. I believe I react differently to wheat and barley, and then some differences are due to how much gluten I've actually ingested.

    Thanks for sharing your story … I think it helps to talk to others and get ideas on what might work for you.

    Shirley

  12. Kathryn says:

    I'm behind on blog reading, so i'm just getting to this.

    I had a severe reaction at a recent potluck – ended up in ER, & so this kind of thing is a concern for me. It wasn't gluten that put me there.

    I'd gone to the potluck with food to share & food, separately that i could eat. I augmented carefully with salad (no croutons, etc). One item was a beautiful fruit salad & i was thankful (it appeared) that i had options.

    When we were packing up i complimented the lady who brought the fruit salad & she replied quite proudly, "Thank you. It's sugar-free!"

    "Of course it is," i thought, "Who puts sugar on a lovely salad like that?"

    "I used Splenda," she said. I must have had a strange look on my face because she defended it strongly. I got out of the situation gracefully, but i knew why i had such a terrible migraine & it got worse & worse as the afternoon wore on. It had been 6 years since i last had had an ER visit for migraine, but that was where i ended up that evening.

    So i'm really struggling with this issue. Our church has potlucks 4-5 times a year. I can't ask everyone to put a food label on it. I honestly thought a fruit salad would be safe, but i was wrong. Between being 1. gluten-free, 2. unable to tolerate fake sweeteners, & 3. vegetarian i just simply can't touch anything someone else has made (in potluck style). But this is going to get very difficult socially.

    I've had folks at restaurants tell me, "It doesn't have wheat in it, it's WHITE flour!" I'm wondering whether i can even trust a family meal on Thursday. I'm planning to take food i know i can trust because i've made it myself & not eat anything else.

  13. When reading your story, I kept thinking to myself that it sounded like you did everything right, and that your friends did everything right.

    This is how it is, so often, when you are eating different things from different places. Trying to solve the mystery of what accidentally had gluten in it.

    I wonder what kind of corn chips you used in the taco salad. I have had, on occasion, reactions to corn chips that do not contain gluten, but somehow must have been cross-contaminated in the chip factory. There is no guarantee on products that are not manufactured in an exclusive gluten-free facility.

    I wouldn't refuse to spend time with friends because of food. Life is about making and enjoying friendships, isn't it? If you don't want to eat the food others are making, I happen to know that it is very easy to pack a cooler on road trips and always have things for yourself at meals.

    Real friends will understand and be supportive of you, because they want you to be alright.

  14. Anonymous says:

    I either pack my own food or volunteer to be in charge of food.

    I led a group of 20 on Boy Scout trip out of state this spring. We had me (Celiac), one other adult who was wheat-allergic, and one kid who was dairy-allergic.

    The boys did the cooking, but I was in charge of the actual shopping — so I had control over what ingredients were used. We had meals that were naturally gluten-free (assuming proper ingredient selection) like Tacos and chili. Sandwiches were served for lunch but were done buffet style OUTSIDE the kitchen so that the crumbs wouldn't get into the kitchen and those of us with wheat & gluten problems could fix our own lunches separately.

    Sometimes it just takes a little thinking outside the box, and willingness to do things yourself rather than rely on others… of course that can't always be done, and in those cases I just bring my own food. I just tell people I have "lots of food allergies," and it's simpler and safer to just bring my own.

  15. Anonymous says:

    NO doubt it does affect your social life. Sharing bread or breaking bread isn't something we do often unless that occasion is planned. Mostly, we celiacs, lose spontaneity in our social life. If you don't mind loosing weight… just bring apples or GF energy bars… We won't starve to death in a few days. Still, a HUGE part of life IS eating. So, we all realize this. Unless your spouse is GF.. I bet you lose some romantic spontaneity also. As a single young GF adult I deal with even more social angst. I met a friends on GlutenFreeFaces.com. It's cool to hang out with someone new and not have to give them the run down on things. There is also GlutenFreeDate.com if you want to hang out with gluten free singles. Both sites are small though. I think we celiacs and cake dodgers are either unaware of the allergy or just in denial. A lot of people are out there just living horrible lives not even realizing they'd feel so much better gluten free. Anyway, I'm all about public awareness. The more people know about the disease the less i have to explain myself. It's as serious as cancer to some but less well known than basic geography in this country..ha ha. To pick on the U.S. again, Doctors in the U.S. ( in general are retarded ) European doctors spotted celiac after the war. I guess that's why they actually train to look for it. Sorry.. another passionate subject.

  16. Thanks for pointing me to this thread, Linda. It is nice to know there are people out there that are dealing w/the exact same thing. Work is especially hard – my coworkers will order pizza and say "oh yeah, you can't have any"…I feel really excluded but don't expect them not to eat gluten stuff just cuz I can't. I've tried educating – one girl swears that I can treat the celiac by just introducing small amounts until my body can "handle" it. We had chicken at a Christmas party today but it was store-prepared and no one knew what the seasonings were. I was told to just "wash mine off". I just ate a baked potato and salad. I guess I'm healthier for it (calories etc) but I'm basically looked upon like a sort of freak. :(

  17. The Chatty Housewife says:

    Jill- I get the same thing all the time. With pizza it's "just eat the toppings" and with almost anything else it's either "just scrape/wash it off" or "there's no flour in it!"

    We can't blame non-celiacs for not understanding, and although my first reaction is to pull on my hair and scream "aaauuugh!" I actually try every time to explain how wheat sneaks in here and there and that I am not a lunatic and that one tiny grain of wheat flour would be enough to make me sick.

  18. We shared a beach house with folks this summer…and I got glutened. I ate tortilla chips that were in my bag–but weren't my chips. (Someone got overly-helpful when cleaning up.) SO…next summer…no multi-grain chips in the house. And I'm bringing my own toaster oven. And I'm hoping the owners of the house will give me the combination to the "spare" refrigerator…so I can have my own refrigerator. (Ended up buying new butter because someone used mine…even though it was marked.)

    It's all good.

  19. I am so glad I came across this site. I was sick for many years. I believed it was gluten that made me sick, but my doctor did not agree. I finally went gluten free on my own. I have had many struggles but have had amazing results. I can so relate to your story and also all the other comments on here. But because I have not been officially diagnosed, many family members and friends do not take it serious. I really struggle with eating somewhere else, but I will never go back to my old way of life.

  20. Victoria Graves says:

    Recently our congregation had a large going away party for a well-loved couple. There are 8 of us who have varying degrees of gluten/dairy issues. They are all single and mostly do not cook because of roommates with no issues. They were willing to do “potluck” just for our little group, but I am the most sensitive of all of us and I envisioned getting glutened by contamination. The theme for the gathering was Hawaiian, so for my own piece of mind I told the others I would make all the food. I made teriyaki chicken (homemade sauce without soy sauce) over broccoli, chicken long rice, Hawaiian macaroni salad, steamed rice, and Kahlua chocolate cupcakes with Kahlua frosting. All 8 of us enjoyed the food, mingled with the whole congregation, felt maybe a tad smug when we had to fight off a few people who didn’t have food allergy issues, smile. The we all decided the best part was we didn’t have to worry about what we were eating, the food and our allergies didn’t have to be center stage on our minds…we felt SAFE. It was time consuming and tiring, but was soooo well worth it.

    • Victoria, that sounds like a great solution. It was extra work for you, but it’s so nice that you all could enjoy the party without food concerns. How kind of you do the cooking!

  21. This was our first gluten free Thanksgiving since 3 of our children were diagnosed. We went to my Mom and Dad’s house and they were very open to us bringing our own food. We made GF stuffing and gravy and my Mom even cooked separate turkey thighs for the kids because she wasn’t sure what was on the store bought turkey. The only hitch was that one relative had their son cook GF macaroni and cheese for himself and my kids. I let the kids eat it, but next year I will make it clear to everyone ahead of time that my GF children will be eating only the food we bring. My kiddos don’t have severe GI reactions, but my girlie with DH had her rash flare up by the time we got home.

    My Mom and Dad didn’t get their feelings hurt if we passed on items, which I really appreciated. It’s the other family members I need to explain cross contamination to. I wish people didn’t take it so personally. It’s hard enough saying no to your kids as it is.

    • It’s a learning process, and it sounds like things went well in many ways for your first year. It is difficult getting people to understand cross contamination, but hopefully they will. I’m sorry your girl had a DH flare up. Thanks for sharing your experience.

  22. I was diagnosed several years ago. At the time there was no gluten free products,so I just ate meat,fruit and vegetables. After a short time I gave it up and ate whatever I liked. I didn’t seem to have any problems. Then I started reading all the information about Celiacs and decided maybe there was something to it and went GF. Know if I get even a little I have gastric issues and get fog brain.Your article about social eating hit home. I have been very depressed about the loss of socializing. Everything social has food involved in it. I try to eat things that shouldn’t have gluten,but because I don’t feel good ever I am afraid I am getting contamination. I prepare GF and regular meals trying to be sure I use separate cooking and preparing stations,Does anyone think I would feel better if I prepare my stuff in a separate place?

    • Anytime you think you might be getting cross contamination, it’s a good idea to try whatever might eliminate the problem. Using a shared kitchen can certainly do it, especially if others use wheat flour for baking. It can get in the air and settle on everything. Also, just because a product is labeled gluten free doesn’t mean you won’t react to it. The 20 ppm standard causes problems for some people. You could try going with companies who only produce gluten-free products.

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