Surmounting Social Situations: Sabotage and Scrutiny Surrounding the Gluten-Free Diet

I've always been treated like I don't have a disease. What is hardest for people to believe it's that celiac is a disease. People don't see your symptoms. They aren't in the bathroom or don't feel good for days. It seems like it's not an acceptable disease. If you had diabetes no one would give you sugar. They'd be worried that they might kill you. People don't realize that gluten will shorten your life. What really bothers me is when people in my family are eating all these desserts and other things I used to eat. It's like they're making fun of me saying ha ha you can't have this and I can. Even if people say it's gluten free I don't eat it. I don't eat corn or rice either. My own husband will go try a little of this, it won't hurt you. That just really makes me mad. I do all the cooking at our house. Everything is gluten free and mostly Paleo. I do eat potatoes even though they're not Paleo. I try all sorts of recipes to vary my diet. Lots of vegetables and fruits. No processed food. I can and dry different things. I make my own fruit leather, dried apples etc. When I go to family dinners, I make sure I always bring something I make and can eat. I clean all the time. Before I was diagnosed with celiac, I was so tired I could barely function. I had severe anemia and thyroid problems. I never want to go back to that kind of life. If in doubt I don't eat it. Keep up the fight.

I was diagnosed with Celiac 16 years ago, am 100% gluten-free, and frequently eat in restaurants as we travel often. Upon arrival, I always ask if they have a gluten-free menu, and try to check the menu online or call beforehand. When ordering, I question the server, and chef if needed, to assure that the meal will be gluten-free, stating that it is for Celiac, medical, or allergy, whichever works, even in a foreign language.  I usually stick to a salad, meat and vegetables, bunless burger, or Mexican or Asian food (I am very sensitive but have found that soy sauce is fine; one brand actually says on the label that the fermentation process alters the gluten molecule, making it naturally gluten-free.)

Yes, I have been glutened - I carry charcoal capsules at all times. I take 1-2 with the meal if I suspect there is gluten present, or 2 an hour later when I'm sick.  That being said, I've only been sick a couple of times in the past year.  And you can't take charcoal frequently as it also binds with the good guys, nutrients, and medications in your digestive system.

I am annoyed at conferences when coworkers order fad-inspired gluten-free and then eat the non-gluten-free food served, minimizing the issue for the rest of us.  Or when others eat the limited gluten-free food at a potluck because they "want to try it" or "it doesn't matter".

I have the most difficult time when I'm a guest at someone's home when they *think* they made this great gluten-free meal for me but didn't bother to read that the chicken broth they used has wheat.  I've been known to rummage through the trash to read labels, and am very cautious when eating what someone else prepares, unless they, too, are Celiac.

So, yes, I prefer to prepare my own food, always bring something to eat, and help out in the kitchen.  That being said, we had genetic testing done - 12 of our family members have Celiac so family events are always gluten-free!

On the positive side, I just returned from Disneyworld.  While labeled "gluten-friendly", the chefs do a commendable job of providing safe, gluten-free meal and snack options. They store, prepare and serve "allergy foods" separately. Kudos!  Another success was a week-long "UnCruise" - gluten-free meals and snacks were prepared specially for me and were excellent.

In any case, you have to be knowledgeable, food-savvy, and your own advocate.

On 10/22/2018 at 3:51 PM, barbarahoerner said:

I assume most places are not safe. Order carefully and usually eat the same things. Broiled fish, broccoli and rice.  So far so good. I can at least be with friends. Eat out very little. Generally 1 meal a week. Only restaurant in my area that is accommodating is Legal Seafoods, a chain on the East Coast. The Japanese restaurant I go to is ok if I stick to Vegetable Maki or Yaki Soba. On a couple of occasions I have tried to explain about my need for a GFD. Successful with only one restaurant.

I was diagnosed about 15 years ago and at least once a year I have an episode from a restaurant where the employees aren’t properly trained to respect gluten-free. Mainly because it’s a fad now. I consider myself lucky though- I bring my own chips and bread with me if going to certain restaurants and rarely trust the staff unless that are really knowledgeable :oh does that mean no flour? ☹️  as opposed to: we will cook in a separate area with separate utensils.  If my friends want to go to a place packed with non celiac items, I call ahead and warn them I’m bringing food. Lol. I think as celiacs we need to compromise and make the best of a situation rather than complain and avoid. AND, my celiac is severe. I get from a tiny teaspoon full force vomiting , diarrhea, eyesight issues, and this goes on for at least one day.