Dude Note: The following article, written by yours truly, appears in the latest issue of Simply Gluten-Free magazine. It’s a good publication run by good people. You can subscribe here.
Since you are reading this magazine, you most likely have celiac disease or gluten intolerance. So you know all about cutting the toxic foods out of your system. Not only gluten, but any foods that cause your body duress. I’ve learned over the years that dairy, soy and corn are totally not my friends. So I waved a sad goodbye to them and then moved on.
But this article is not about toxic foods and removing them from your life. This is about toxic people and waving goodbye to them as well.
I’m not going to lie to you. I’m blessed. I’m more than blessed. The people I surround myself with are friggin’ awesome.
Mrs. Dude and the Dudettes? Simply the best.
My brothers? Very cool.
My friends? So much fun.
My in-laws? Amazing.
And it goes on and on. I have an amazing support system and I would not have it any other way.
But sadly I hear story after story of people who are surrounded by total turds and it just saddens me to my core. Here’s an email I received recently:
I was diagnosed 7 years ago with celiac disease, so it’s not anything new to them. We usually bring the entire meal, so they don’t have to worry about accommodating my diet, not that they would anyway. At least I know I’ll be able to eat/celebrate with them.
I was very sad when I opened my gift this year to find a giant tin of gluten-filled store-bought cookies!!! I was so taken aback. I said, “Thanks, I’m sure my husband will enjoy eating these.” I know it’s the thought that counts, but then WHAT was she thinking? Giving gluten cookies to a celiac is like giving a basketball to a blind man or a work-out video to someone in a wheelchair.
I felt very sad. On the way home, in the dark, I shed silent tears.
Or how about this one:
But wait…there’s more:
And how about one last one for good measure:
Hi Gluten Dude. I just recently came across your page. I have a question for you about gluten etiquette I guess lol. For the past two years I have not eaten gluten; every time we go to my mother-in-law’s house, whether it be for Christmas, Thanksgiving, etc., she has absolutely nothing to offer me for food.
I have to sit there and watch my husband eat. My sister has gone gluten-free in the past year and she deals with it with her husband’s family also.
Are we expecting too much that our family members would have at least one thing to offer us? From our standpoint we would never have somebody come to our house and not have something for them to eat. It just seems that they obviously don’t care enough to try to have something.
What is your whole take on that situation?
My take? Who does this?? Who treats people so callously because they have an autoimmune disease? Does how we eat affect you in any way, shape or form??
But I think it goes deeper than just the food. If someone is mistreating you because of your celiac disease, it speaks volume about them as a person. If it wasn’t celiac, they would find some other reason to make you feel bad about yourself.
When you first get the dreaded celiac diagnosis, it is absolutely overwhelming. You feel like your entire life has been overturned. And in a way, it has. Nothing will be like it once was. I still remember going grocery shopping the day after my diagnosis and all I kept thinking as I was going up and down the aisles was “I can’t have that. I can’t have that. I can’t have that. I can’t have that.” It really sux.
But if I had to do it without Mrs. Dude’s support? I cannot even imagine. Immediately, she immersed herself in education about the disease. She went out and bought separate utensils and pots and pans. She made part of the kitchen off limits to everyone but me. She labeled all of the drawers, counters, etc. “gluten free” to remind the kids and our guests. But more than anything else, she just made me feel like I was not in this alone. And because of this, it’s seven years later, I’m (somewhat) healthy, I’ve never cheated and living gluten free just feels “normal” now.
We all deserve this type of support. If your family and friends are not behind you 100%, dig deep and figure out why. It is a tough journey having celiac disease and it’s one nobody should go through alone. And at the end of the day, if they cannot support you, you need to find another support system. The celiac community is indeed a wonderful group of people. Immerse yourself with them and all of the sudden, you won’t feel so alone.
Join Twitter and hashtag gluten and celiac.
Follow some of your fellow celiacs on Facebook and Instagram.
Find a celiac support group in your area.
And by all means, feel free to ping me whenever you want.
I’m 50 years old (350 in dog years) and I’ve come to a basic acceptance of our society: the world is an ugly place and it’s getting uglier by the minute. We’re losing our way as a civilization. We’ve been given this amazing planet to live on and instead of sharing our resources peacefully, we argue and we fight and we kill. Over land. Over religion. Over politics. Over money. What a waste.
My point? Life is short. You deserve to be happy. We all deserve to be happy. Celiac or no celiac.
If you are surrounded by people like those above, get them out of your life. Now. Family or no family. It’s inexcusable for anyone EVER to make someone feel bad about a condition they have no control over.
Get the toxins out of your life and find yourself some peace.
Unfortunately, this may be much more common than we care to admit. My immediate family and in-law family do not accommodate my needs — I have to bring my own food to functions. My immediate family gets irritated that I can’t go to just any restaurant to eat and that we can only go to 1 or 2 when they want to eat out. I have said I will go with them to another restaurant, but that I won’t be able to eat, but sitting there not eating makes them uncomfortable. Ironically, I have one parent with Type 2 diabetes who expects the world to make accommodations for that, yet for some reason, having an autoimmune disease is not the same.
The sad reality is, many people don’t care unless it affects them personally, and since it’s not their cross to bear, it’s a nuisance to them. I simply don’t expect anything from them anymore.
Thanks for sharing these stories. To those who have families who don’t supply food they can eat at family gatherings, I want to say that it’s a complicated issue and every family is different. Some reasons a family might not prepare anything a celiac can eat:
**they don’t understand
**they’re afraid to cook for you, that they won’t do it right
**they think you’re a hypochondriac
**they’re just plain mean
Here’s the thing. We’re each responsible for ourselves, and when you have an autoimmune disease that dictates what you can/can’t eat, that’s even clearer. Five years into diagnosis, here’s my M.O.: I bring my own food. Flying far from home: I bring my own food (more food than clothes in the suitcase). Going to a family dinner 60 miles away: I bring my own food (like, cook a mini thanksgiving dinner a couple days in advance so I can bring my own leftovers and happily eat them while everyone else eats the stuff I can’t). Church potluck: I bring my own. Friend’s house: I bring my own.
This is freeing. Frees you from getting sick, frees them from the burden of cooking for you. You can bring enough for yourself or enough to share, doesn’t matter. But I think you’ll be glad you started doing it this way.
Yes, I agree. This is what I do as well. I can’t expect anyone to cook for me with my sensitivity level (actually due to allergy). Like you said, it takes the stress off of you and others also.
I’m newly diagnosed 4 or 5 months ago, and so far I’ve done it this way, too. It actually stresses me out to have other people cook for me! I also still struggle with having to explain all the rules and safe/unsafe foods. Occasionally it might feel worth it to go through the effort to explain. But I agree that it’s SO freeing to just bring your own food, focus on hanging out, and not have to worry! Sometimes I bring something to share, so that I still feel connected to the meal in some way.
On the other hand . . . if you bring your own food, there can be a whole different set of challenges. Being pressured to try “just a little bit” or something, or having to defend your choice, or offending people. Some people can even be abusive about this. (But that just shows you who the “toxic” people are.)
What about the step father who declines my suggestions to go somewhere I know I can eat, and insists on going to his choice “because it’s a treat for Kate”.
It’s such a treat to sip a glass of water and watch him eat steak (because there’s nothing gluten free on the menu).
This is the same person who moaned about giving up alcohol for 6 weeks (no-one else in the world has ever had to give up an entire category of food or drink….)
My husband and son, however, are very supportive. And a big shout out to my friend Sally. I’m keeping them!
I feel a bit differently about this as I never expect someone to accommodate me, I always have something packed when go to someone’s home. If someone has taken the time and effort to make something gluten free, then I have to “grill” them about how it was prepared, if they made sure everything in the process was gluten free, they kept it away from other gluten sources, etc. And if they made an effort, but missed a step, and I still can’t eat it, then I feel HORRIBLE, because they made a good faith effort, but I still can’t eat it. To me that is much worse. When I go to a potluck, I always bring something that is safe for me to eat, and if that’s all I can eat, so be it. If friends/family want to go to a restaurant, I call ahead, if I can’t eat anything there, I eat before I go, and take a snack in my purse. If i’m headed to a dinner at church or at a friends house, I find out what they are eating so I can take something that looks similar. The gift giving of gluten filled treats – that is just horrible…. not making a place in your own kitchen that is safe/gluten free, unacceptable. But to expect others to cook for me, that is more stressful for me, I’d rather take my own food or snacks with me, then have the stress of consuming something that I can’t be totally sure of, and having that person feel bad because they tried and failed, spent the time and effort, and I can’t eat it. I only have people in my life that respect my gluten free needs, but I respect them enough not to force them to accommodate me in every situation. Its a lot to ask of people. I learn something new every day about eating safely, to put that responsibility or expectation on some one else… I can’t do that. But if they don’t respect my need to stay safe, that is entirely different.
I am in the habit of bringing my own food to weddings, parties, work meetings, in laws house, etc. Most people don’t understand the cross contamination or have cookware that is gluten free. I figure it took me quite awhile in trial and error to cook safe gf meals so why should I expect gluten eating people to get it right away too. My mom cooks gluten free food me and I’m truly grateful for that. It’s not always about the food, I’m just happy to be invited to parties and outings. When I first was diagnosed I was excluded by some even by my own BF. It was very hurtful that just because I couldn’t eat somewhere I was excluded?? You learn who is supportive and there for you. The gift of gluten cookies I too would of been heartbroken and would be offended. Having to live your life a certain way definitely defines who you are and who are the non-toxic peeps in your life.
For my own sanity and health i bring my own food no matter where i go (accept my mom’s shes truly amazing). As a forty year old woman i have decided that im sorry if i offend someone by not eating the GF treats or dishes they attempted to make for me but i cannot risk the cross contamination. No one will ever take my illness as serious as I do and thats ok. Being comfortable , physically and emotionally during a family or friend event is the only way to be. Like ive shared with so many when they say, ” no gluten i would die” i smile and say yes at first i was taken back but so happy that i have a chance of my hair to stop falling out, my nails to grow back and to not be in the hospital. No gluten? Sure an adjustment but well worth it.
Hi folks. Just want to clarify. This is not about depending on others to make sure we are kept safe. It is TOTALLY our responsibility. This is about empathy and compassion.
Hey dude, i completely got your message through the article. What i was trying to get across in my reply was that ultimately we are the ones that need to be in control. Some people show compassion but then get highly offended when their good deed goes ” uneaten”. You have made a great point..toxins. I cant imagine doing this with out the love and support of my husband and children. This is why this is such an important platform.
Totally agreed.
Thanks, gluten-dude! I logged on for support and this was the perfect post to see. Since my diagnosis over a year ago I’ve kept a positive attitude. I know I’m lucky to be able to control celiac disease through diet and my husband is very supportive. When I attend a family (or friend) event I bring my own meal (after checking with the host first, of course) and a gluten-free desert, side or appetizer to share. (usually more than one, sometimes all 3). I never complain about what I can’t eat, or that going a to restaurant is a mine field, or that travel is a huge pain in the a**, or that taking prescription meds is like playing Russian roullete. But my family has some crazy ideas “You can eat gluten once in a while, it’s not going to kill you” “My neighbor has celiac disease and he goes out to eat all the time” “Oh, I would eat gluten anyway and just be sick.” Right now, I am being pressured to go out to eat. I spent the last hour trying to find a restaurant where I’ll feel confident of not getting glutened. We’ll see how this plays out. I just want them to take my diagnosis seriously. As an extra bonus I would like some credit for taking control and not eating gluten on purpose since the day I was diagnosed. And as an extra, extra bonus it would be nice to hear “Wow, ceiac disease sucks. I never hear you complain. Good for you for having a positive attitude and focussing on what you can eat instead of what you can’t.” End of rant. I feel better Thanks.
Sorry! Didn’t mean to post this twice.
Thanks, gluten-dude! I logged on for support and this was the perfect post to see. Since my diagnosis over a year ago I’ve kept a positive attitude. I know I’m lucky to be able to control celiac disease through diet and my husband is very supportive. When I attend a family or friend event I bring my own meal after checking with the host first, of course, and a gluten-free desert, side or appetizer to share. (usually more than one, sometimes all 3). I never complain about what I can’t eat, or that going a to restaurant is a mine field, or that travel is a huge pain in the a**, or that taking prescription meds is like playing Russian roullete. But my family has some crazy ideas “You can eat gluten once in a while, it’s not going to kill you” “My neighbor has celiac disease and he goes out to eat all the time” “Oh, I would eat gluten anyway and just be sick.” Right now, I am being pressured to go out to eat. I spent the last hour trying to find a restaurant where I’ll feel confident of not getting glutened. We’ll see how this plays out. I just want them to take my diagnosis seriously. An extra bonus would be acknowledgement for taking control and not eating gluten on purpose since the day I was diagnosed. As an extra, extra bonus it would be nice to hear “Wow, celiac disease sucks. I never hear you complain. Good for you for having a positive attitude and focussing on what you can eat instead of what you can’t.” End of rant. I feel better Thanks.
It is so tricky to navigate family functions and holidays and outings… I used to not bring anything and then I would feel so odd because I could not eat without being contaminated. About six months into my disease I decided I would just do most of the cooking. So, i make a ton of stuff I want to eat. Like spinach artichoke dip, a dessert if I crave sweets, veggie tray, fruit platter, fruit bowl, something in my crock pot. You just have to take a huge serving amount when you first set it out in case someone sets their bread bowl next to your veggie platter. If this is too expensive or too time invasive then just make yourself a plate to take for yourself. You can also fill up before so you leave so you won’t feel weak or pressured to eat because you are famished. (I don’t want someone to cook for me- I just can’t afford to take the chance on my health at this point)
I found the people in my life with the most objections to MY DISEASE- are those who have the most work to do on themselves. Don’t allow them to make you feel guilty for your disease. You may be able to educate them. It’s just a hard disease for most people to wrap their mind around. An auto-immune disease that can be controlled by food. People get/understand allergies. Most people don’t get auto-immune.
(My Aunt screamed at me once because she was making my dad a burger and put the bun down on my plate to put ketchup on it. I took my plate right to the trash and made a new one. She told me I was being dramatic, ridiculous and wasteful. I informed her I have a disease in which one crumb could put me down for the next day, week or two. I asked her if she enjoyed the flu- because those are usually the best of what happens when i get contaminated. (She has IBS and controls it by Immodium AD- isn’t open to GF diet because her Dr said she didn’t need to do that). You can’t save them all. Maybe she will get so sick one day that she will want to revisit this. I told her my door is always open if she wants to talk. It reminds me of people who smoke through a stoma (Trach hole) but not cigarettes- food.)
In the end- this is about your disease. One that is controlled with food in a fickle body. Don’t stress the holidays & the family events. Consider bringing your own stuff and enjoy the ride and the company.
For the person making food in your room- At least you know your food is safe in your room. I hope you can get your own place with a safe kitchen. Best of luck to you.