November 19, 2009
Celiac Disease and Your Social Life
A Recent ExperienceFor 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.
QuestionsThe 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.
Labels: celiac disease
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.
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.
Are the holidays almost over?
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! ;)
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.
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.
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.
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.
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.
It's all good.
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