Got Celiac? Stop Living in Fear

afraid-of-gluten

For those of you a little scared by the above picture or for those who still have nightmares about Cape Fear (not saying I do…maybe), let’s start with a joke:

What’s the difference between a dirty bus stop and a lobster with breast implants?
One’s a crusty bus station and the other is a busy crustacean.

Feel better? Good. Now we can talk about having celiac disease and unnecessarily living in fear.

I received an email recently from a fellow celiac who has let the fear of getting sick prevent her from living her life. I’m not sharing this to make anyone feel bad. I know she is not alone in this and I just want to convince the community there is absolutely no reason to live your life in fear.

Here is the email:

Dear Gluten Dude,

I need some advice. I’m a 3rd grade teacher with celiac disease in a 100% free breakfast and lunch school. I don’t know about you, but I’m absolutely terrified of gluten. I don’t like it anywhere near me or my house. However, I encounter it on a daily basis at work. My students have breakfast every morning at their desks in my classroom. If you’ve ever met a 6 or 7 year old, you know they are inherently messy. By the end of breakfast last year there was always gluten all over desks and occasionally on the floor due to a spill. I trained the kids how to clean up their messes with disinfectant wipes as I don’t like to touch gluten ever.

Additionally, every day after breakfast my class would take a trip to the bathroom and everyone washed their hands well with soap. I absolutely hated breakfast every morning last year because it took so long to clean up and I still felt like gluten was somehow multiplying in my classroom. I am dreading the start of the new school year for obvious reasons. I would love to have my kids eat in the cafeteria, but I don’t want them, or me, to feel isolated as only kindergartners eat in the cafeteria. I’m also terrified of bringing up the issue with my principal because I’m afraid she will think I’m being ridiculous.

What should I do?

Three words: Stop. Being. Afraid.

Gluten in your classroom is not going to hurt you. How many of us live in households with gluten? I know I do. If you suspect you got some gluten on your hands…simply wash your hands. Sometimes the answer is that easy.

If I could give one piece of advice to those newly diagnosed with celiac or gluten sensitivity, it would be this: Live your life. Do not let celiac hold you back. It’s a bump in the road, but it’s a bump that is manageable. I promise.

Yes, you’ve got some serious adjustments to make. Yes, your body will take some time to heal. Yes, you will lose a little bit of freedom and spontaneity in your life.

But you know what? You’re getting your health back and that’s what matters.

There is an unbelievable amount of fear-mongering online. “You can’t have this” and “you should stay away from that”. Some of it is accurate. Some of it is complete BS. Stick with the facts.

Do not live your life afraid to do things simply because of GLUTEN. No matter what people say, it’s NOT everywhere and you CAN lead a normal life (with a few adjustments).

Take precautions. Educate yourself. Use common sense. And if in doubt, do without. And if you have any questions about something, just ping me. I’ll set you straight.

Don’t be like the people below. You got this.

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22 thoughts on “Got Celiac? Stop Living in Fear”

  1. I wish gluten was easy to see. I wish lots of things about this disease I have. But I always reminds myself that 1. At least I know the cause of some of my issues, and 2. It could be worse. A lot worse.
    Thank you Gluten Dude, for being a voice for Celiacs.

      1. I must agree to a certain point. I’m not in fear, but I do have Celiac Disease severely that coming in contact with gluten products attacks my system. Not that day of contact, but wks months. I worked as a Nanny in glutened environments and was always sick somehow. I now work for a grocery store & finally am in a Dept that I’m not touching or breathing flours, breads etc. That have made me sick. Oh & Dr diagnosed to the severity of how my body reacts to gluten. I don’t live in fear, I just am aware of what can & does happen to my body when exposed. 6 yrs GF & I’ve come a long way to a healthy lifestyle, my pets are even GF. Very healthy & no allergies or health issues. Dog- Shiba Inu 9 yrs old, calico kitty almost a yr old. I truly enjoy my GF lifestyle 🙂

    1. Definitely could be a lot worse. A year or so after I got diagnosed, my brother-in-law took a short flight off a horse and landed on his head, nearly breaking his neck. He’s now a quadriplegic. I was the lucky one. Things like that put stuff in perspective. Sure, celiac is a continuing PITA, but it’s not fatal (if treated, that is, if gluten is avoided), and lots of fun things are still fun and lots of good food is still good.

  2. Kimberlee Fitzgerald

    Great advice! Thank you! I’ve noticed a rise in anxiety, since being diagnosed. I still go out, enjoy life, abd jeep a full cooler in the car, along with wipes. It’s been a lifestyle modification, and inconvenient, but I am alive abd getting my health back.

  3. I wish it were that simple. I had to live for a few weeks with friends who bake. “Just” was my hands? There was flour dust saturating absolutely everything. You could see it on every surface, in every drawer. Ie, it was surely on the taps themselves, and in the drawer where the kitchen linens were kept, with which you dry your hands. No matter how much they wiped the counters, it was everywhere. Sure you could wash your hands, but the very next thing you touched …. It was a minefield.

  4. Thank you for writing this. I hope the person who wrote in takes your advice. There is fear and anxiety in everything, even a medical condition. I hope we can all rise above!

  5. Surely getting her class to eat away from the classroom would make everything easier – a bulk trip for handwashing on the way back from the canteen to the classroom and then no risk of a casual contamination.

    I go to classes like yoga and jujitsu (stay with me, there is a point to this random comment). These classes are held in community centres that are multiuse buildings and prone to grubby floors. We’re down on the floor for bits of the class. I used to frequently feel “off” the day after a class, and sometimes had a full on glutening. Then I started hand and arm washing straight after the class, followed by a shower once I was home. I’m now absolutely fine after training in the different venues. I suspect that I kept picking up low levels of gluten from mushed up crumbs on the floor. Yes this sounds paranoid. Did acting paranoid make me healthier, yes. Can I now enjoy the activities safely, absolutely yes.

    Like so many gluten risk situations, it just depends on how sensitive you are.

    Good luck with getting this sorted!
    cheers

  6. Great advice, GD. I think when we’re newly-diagnosed we’re still learning how much slight exposures in the environment are OK for us. An example that I learned was: after diagnosis, I still continued to play with playdough with Sunday School children. It took me a while to figure out why I’d have a painful itchy rash on both hands all day Sun and into Mon. (I’ve had the problem just about all my life while playing with playdough, but honestly didn’t make the connection, even after diagnosis.) It finally dawned on me one itchy Sun evening: regular PlayDough has gluten. (There are gluten free playdoughs as well as gf recipes to make your own.) So, yes, there is gluten around me. My son bakes (regular) bread every few days for the rest of the family to eat. He takes great precautions and I’m fine. We take precautions for dishwashing here, too, washing gluteny stuff at the end of the session, with a special sponge just for that. I am indeed careful when around people eating stuff I can’t eat, but I remind myself that it’ll truly only hurt me if I eat it (or, apparently, if I started rolling snakes out of it………) I have every confidence the writer of this note will keep strong and also get more used to living this way, and learn what she does and doesn’t have to worry about.

  7. ((Sigh)) Gluten is NOT the ebola virus! One does NOT need a hazmat suit, double-gloving on your hands when it is present. Touching gluten will not make me sick. Eating it will! I decided to live a gluten free without being paranoid, maniacal or hysterical. I have done just fine- my antibody levels are always in the negative/normal range when retested. I live in the real world, not a perfect world and am doing just fine.

    1. Yes, thankfully gluten is not the Ebola virus! But for some of us the hazmat suit would be very helpful; I have Celiac full-blown and am hyper sensitive to gluten, on an intense struck the-tox diet while re-building my gut biome, entire face, neck, arms, hands, fingers covered with dermatitis herpetiformis, and boy does the gluten get inside me easily! Just saying… 🙂

  8. My husband was just diagnosed with Tophi Gout. It’s rheumatoid arthritis which can disfigure not only joints but ears etc. He can’t have beer (not even gluten free) shell fish or red meat.
    Not only does he get sick physically, you can also see his illness. So all these years he has dealt with my celiac and been my cheerleader it’s my turn. A burger and a beer are 2 of his favorite things. (okay and tequila and shell fish ) So this has been a big adjustment for him. Right now he is going through the stages I went through when I was diagnosed with Celiac. Denial, Anger, Depression, Then Hey, I feel better I can do this. He is at Anger right now. I know it will get better and he won’t fear red meat as he is now. I became a better cook after being diagnosed. Now I’ll get better with veggies because of him. In a few months after his body readjusts he can have red meat 1 or 2x a month. I told him that is better than celiac, I can’t have gluten 1 or 2x a month. That made him laugh and say, “I’m being a baby aren’t I?”
    It all takes time, gluten be damned. But fear we just don’t need. You don’t have to live like that. Enjoy life.

  9. Ok… I can agree (somewhat), but for me, most every time I try to eat at a restaurant (gluten free they say), I get cross-contaminated. I go to friends houses — relatives — and I finally decided it’s important that I bring my own food. They try so hard, believe me, to give me something “gluten free.” Is it? No. Again, cross contamination. Within about two hours of trying their GF food, I have a rash on my face, neck, ears, chest — you would swear, I have been slapped, beaten.. then comes the vision problem, joint pain, dizziness, heart palpitations, nausea, headache, bloat… and the worse — brain fog. This can last for weeks. I have a sister (God bless her !) who is my biggest advocate. Believe me, I have a voice, I’m not shy, but I don’t want to hurt the feelings of my friends/family who really do try to prepare gluten free something or other for me… but quite honestly, they do not understand. I get that… I do. So ask me again, do I fear getting glutenized? Heck yes !!!!! (Got some on mother’s day… here it is August… my vision problems, bloat, etc… almost gone (for now).

  10. So I usually appreciate the extent to which you are able to be a voice of reason for folks with celiac.

    But this doesn’t make any sense. This is tantamount to someone saying that cross contamination doesn’t Really matter as long as they have menu items marked GF.

    Especially in a place like a school, where children are constantly handling gluten or items coated in it [and, by extension, so are teachers], it’s really quite dangerous I would think to tell a person with Celiac disease to not worry about it.

    Assume he eats lunch in the classroom between free periods. Washing his hands before meals is all well and good, but odds are there isn’t a sink in the classroom. So already in the process of getting back there you’re touching at least 2 or 3 doorknobs and other items that have DEFINITELY been gluteny. Let’s assume you consider that, and bring paper towels and prevent your hands from coming into contact with anything. Once you start eating [presumably at your desk], you’ll come into contact again with other items of yours that you invariably made gluteny throughout the day – cell phone, chair, drawer handles, computer mouse, etc. The same would be true in the teacher’s lounge or wherever a teacher would need to go to reheat their lunch. And it would be CRITICAL that if they did ANY of these things in between bites (especially if it was food you eat by hand – GF pizza, sandwhich, etc) that you wash your hands AGAIN to avoid CC.

    I get why the message is don’t live in fear, but it’s downright irresponsible to tell a person in the situation the writer described to ‘simply wash your hands’. I have also had to work in extremely gluteny atmospheres and would get sick constantly despite best practices. It took pretty militant adherence to finally fill all the cracks.

    1. I tend to agree with Casey. Of course it’s not good to live in fear, but that still leaves the practical aspects of dealing with cross contamination.

      It’s one thing to say if you come into contact with gluten, then simply wash your hands, but how often can a teacher leave a room of 6 year olds to do so? And how effective will that be if they then come back to that same room for the rest of the day?

      What about those with DH?

      I think also it’s not always about fear, but rather, it can be draining to be in an environment where you must be always vigilant and do not necessarily have the understanding of others. That gets tricky very quickly.

      I think OP should talk to their boss and see what sort of system can be worked out.

  11. I hate that im terrified of food. I can never be 100% sure there wont be any gluten or lactose in the food, cause they can be hidden in any product. Candy, chips, sauces many things that arent obvious that they contain gluten. Eating outside, whether its at work a restaurant, a friends house or my parents. Im always scared and try to avoid it. Also because people dont understand how serious it is.

  12. I know this is an old post but I read it and it gave me huge reassurance. Gluten scares me. I worry being sat next to someone eating a sandwich, I hold my breath going past a bakery and I NEVER eat anywhere other than home. But then I read the comments, people getting ill from being near bread or flour or touching a floor that has gluten on it, touching play dough and the dangers of cross contamination with door handles!!! I’m confused 🤷‍♀️ can you get glutened from mearly being in its presence???

  13. I don’t know if this will help with his new lifestyle, which is tip number 1: I do not refer to eating gf as a diet, but my lifestyle. Mainly, because being gf is not just about food and I have never liked the word diet ever, because I think it encompasses to many other words, like “choice, cheating, failure.” My other tip is, I made a physical list of all the foods I could eat, that were naturally gf. Anytime, I “missed” a particular food, I just got out my list! That was in Dec 2009 and now, I don’t even think about what I can’t have. I am sooooo much better now and discovered the love of fresh, pure food! Hope things get better for him and you.

  14. Sometimes you just can’t win my friend. Your article is very reasonable. I lost my paranoia over gluten many years ago. I’m not saying I’m careless. I just couldn’t live with that high level of anxiety anymore. It wears on you and everyone around you as well. The last thing I want is to have people cringe when they see me because they’re tired of my controlling attitude. Believe it or not, other people have health problems too. Some of them are far more problematic than my sprue. I stopped feeling sorry for myself a long time ago. Open your eyes, while you’re so busy controlling your little world you’re forgetting to enjoy just being alive. No one feels 100% wonderful everyday. Yes even non celiacs can feel like crap sometimes. I have a friend with mutiple sclerosis, another with type 1 diabetes, one is dying from advanced colon cancer…he’s already had 2 liver transplants. One dropped dead from a sudden heart attack. Another has a colostomy bag from a bad case of Crohn’s colitis. None of them have celiac/sprue. Yes, I am getting older. I’m 63. All we have is right now. Enjoy it!

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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