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

I went to eat at a normally safe place to eat and ordered my usual. I explained that I had celiac and needed the gluten-free bun and special care as to not contaminate my food. The waitress handed me my food and I noticed it looked different and brought it up. She said they had switched bread brands. I believed her and ate my sandwich. Come to find out, it was not gluten-free. I was sick not even 10 minutes after my first bite and it lasted for days. Come to find out, the waitress was trying to see if I was being serious or just another hipster. 

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.

 When I go to a restaurant I don't know, I let the hostess know that I have celiac disease and that I need  my food to be gluten-free for medical reasons and ask if they can accommodate that.  If there is any hesitation, I leave before I am seated.  If I am going out with others, I review menus on-line or call ahead of time to find out where I stand.  All along the way I tell wait staff up front that this is celiac disease and medical and ask them for their help in making choices.  If they are clueless, but well-meaning, I will ask them to run my questions by the chef and will take extra precautions to be safe.   If  it later becomes apparent that I have had a gluten exposure, I call them to let them know.   How will they learn without feedback?   Usually the places I go to do try and do want to be accommodating.  

My mom repeatedly poisoned me, so my husband and i started doing all the cooking when we visited; made a big deal of cooking special dishes.   My dad and brother were helpful, since moms cooking is terrible, and ours is, frankly, very good!   

I am very lucky my husband has a good 'school teacher' look, and used to work in the restaurant industry.  If a server balks, or my food comes wrong, he handles it.  I don't get why people do this; it defies logic.   We are blessed with wonderful friends.  

Unfortunately, Medical professionals often question me, but since i spent way too much of my childhood urping, i don't put up with much anymore; 62 years of perspective helps.

I go out to restaurants with my family, but do NOT eat.  I order an iced-tea.

I either eat a bite before going out or simply skip the meal all together.

In the past, repeated exposures to gluten resulted in 16 bowel movements a day.

Severe malnutrition generated other major health issues & ended in surgery.

Restaurants?  That's a big No Thank you! 

Sadly my problem is my own mother who absolutely refuses to believe some gluten is not okay. Every single holiday involving a meal turns into a fight that leaves me crying, frustrated, angry with myself and the disease and alone. I've tried to get around the fighting by inviting my mom and step dad to my place for dinner but she says no......step dad wants apple pie or she wants the turkey stuffed. We just got past Thanksgiving and I'm already dreading Christmas. It'll be another holiday where I sit at home by myself. What really sucks is that if my step father had Celiac disease or, if my father was still alive and had the disease, mom wouldn't insist they eat a turkey with stuffing made from bread containing gluten. What's really stupid is that this past holiday, I just about agreed to eat moms gluten-loaded turkey just so I could then vomit all over her dining room table to prove to her how wrong she is in her beliefs. The only thing that stopped me was that I couldn't afford the weight loss. I only have one restaurant I can trust should I want to eat out. I find it sad I can trust strangers in this restaurant more than I can my own mother.

One more thing. My mother doesn't take the disease seriously. In her opinion, she doesn't see why I Can't suck it up during the holidays since I'll just have at worst a stomach ache. She's talked to a couple of people (or so she says) that are maybe gluten sensitive and she relates what these people say to what Celiacs go through. I truly feel many people do not understand the difference between gluten sensitivity and Celiac disease and like my mother, refuse to educate themselves. I find it sad that Celiac disease is only taken seriously by those who suffer with it. 

1 hour ago, Karen P said:

One more thing. My mother doesn't take the disease seriously. In her opinion, she doesn't see why I Can't suck it up during the holidays since I'll just have at worst a stomach ache. She's talked to a couple of people (or so she says) that are maybe gluten sensitive and she relates what these people say to what Celiacs go through. I truly feel many people do not understand the difference between gluten sensitivity and Celiac disease and like my mother, refuse to educate themselves. I find it sad that Celiac disease is only taken seriously by those who suffer with it. 

Karen P 

I am sorry to hear the pain and isolation you feel at your mother's treatment of you. I wish for better. One of the people in life we should be able to count on to be in our corner is mom. It always hurts when we find when she is not regardless of reason. The kicker is this is genetic she denies you got it from her or biological dad. Ouch !

My 2cents don't try to rationalize your mother's minimization of celiac or NCGS it doesn't matter if someone is a silent asymptomatic celiac, a full blown all 300 symptoms, or a 60 symptoms NCGS person. She would minimize them all.

What she can choose to do, but fails to do for reasons that only pertain to her her alone is to make an effort to accept her daughter and support her. Period. She fails!

There is not much more I can say to change this for you. 

Someone wise I know would simply say your mom is weak. 

With that Karen P be strong !

knowing you are strong despite your moms treatment of you. It is her weakness and fear . in time maybe my words will help you reframe this .

best wishes 

I found the Jimmy Kimmel video very telling.  It exemplifies what happens to society's point of view when something becomes 'trendy' whether there is a genuine problem some people face or not.  It can be bad enough when popularity of a diet/fad/idea/opinion causes harm to businesses and industry, but it's even worse when it gets down to an individual's health and what amounts to casual poisoning.  The saddest part?  I get the outlook of some of the public when you see videos like Kimmels.  These people have jumped on a bandwagon without any idea of what the wagon is, where it's going, or what its purpose is.  Of course, it's not okay to lie to someone about the ingredients of their food - don't misunderstand me - but I can understand the irritation.  Wait staff, kitchen staff, etc, go to a lot of trouble for some of us and special requests can really disrupt a kitchen and restaurants flow.  I imagine they hear a lot of bad information and bad or ignorant opinion and thoughts. 

I try to make a point of letting them know, like some others here have said, that I have a medical issue.  A disease.  Sometimes I can tell that saying 'autoimmune' or 'allergy' is the ticket to get serious attention.  I don't like that, though.  At times, it seems I sound self-important when I go that route.  If it keeps me from getting glutened I'll do it.  What a shame we have to deal with that sort of jaded disbelief.

I too have problems with sister about Celiac Disease Last year for Christmas I brought my gluten free turkey and Sweet potatoes to my family's Christmas dinner and while we were eating my sister asked a lot of questions about the disease but when I explained about the disease she said how come now I can't have gluten when I was younger I didn't have this and if she had this disease she still eat gluten because of all restrictions being on gluten free diet I told her even if I eat a small amount of gluten I become very ill and it takes me about a week to recover As restaurants go the wait staff and cooks have been very accommodating to my requests where I live The other day at my church we had Potluck dinner and town hall meeting The other church members would tell if there dish was gluten free or not For dinner I had chicken salad and cheesy potatoes and orange salad and two little candy bars But was first diagnosed K bad a problem eating food that wasn't gluten free but I haven't had a episode of gluten since 05/18 which I'm very happy about

I don't consider any of the people mentioned in this article "esteemed".  more like self-important "celebrities" that feel the need to comment on everything out there to keep themselves relevant-  including the politicians who will say anything to get a vote.  Having said that, sadly there are a lot of people that pay attention to all that hoopla and hyperbole and believe what they are told and jump on the bandwagon- whether it is a diet bandwagon or an "anti-diet" bandwagon.  And in the end, if a restaurant claims they offer gluten free or a person says they need to be gluten free, the reason doesn't matter.  You either offer it or don't and if you feel like the person is being inconsiderate or demanding, then you should not be in business or you should state up front you dont offer gluten free.   It is no one's business and in a world where people claim to be tolerant and understanding, they are only tolerant or understanding of those with the same beliefs.  

I have dealt with all of the above! We have come to the conclusion that eating at home is the best. I know it is not fair to my husband but, I like the others have been sick for days after eating a "so called" gluten free meal. I have also been asked if this is a medical issue or just a dietary choice? I grew up on a farm and we grew wheat, corn, soy beans and other crops. Why in the world would I not want to eat what my family grew? Even though the restaurant says it serves gluten free, if their kitchen is not gluten free, then your meal is NOT going to be gluten free, period. There is one very notable restaurant that advertises a gluten-free menu. They even say their pasta is cooked in non-gluten free pasta water, meaning, they throw the gluten-free pasta in an already used pot of water! If you don't bother to read the SMALL print then you are in trouble. I don't know if others are as sensitive as I am, but I have to use gluten-free soap, shampoo, toilet tissue(that one is a bit more tricky), even hair color.