Quick and Dirty Guide to Gluten Allergies

I have a friend who was recently diagnosed with a gluten allergy, and he asked for some pointers on living with it.  I get this question a lot, and decided to memorialize an answer here.  I’ll try to update this post periodically as I have more thoughts.  This is quick and dirty at the outset.

  1. Never just order something as gluten free.  Always tell your host that you have a gluten allergy.  If they look at you skeptically, explain that if they serve you gluten you will get very sick.  In their restaurant.  Places that prepare gluten free food as a lifestyle thing do not always pay attention to cross contamination.  When you explain the allergy issue, it makes people be a little more careful.
  2. Don’t be embarrassed to speak up.  It is painful having to repeat the same spiel everywhere you go, explaining the allergy.  You have to commit to doing this, if you want to commit to being healthy.  Avoiding the explanation is not worth the subsequent pain of begin glutened.  You’re not being an ass–you’re explaining a medical condition.  This medical condition is not your fault, and is not something to be ashamed or embarrassed of.  It is a disability.  Get used to explaining it.  (Also, get used to smiling and nodding politely when people tell you about their fantastic gluten free fad diet).
  3. For me, oats are just as bad as gluten.  The proteins are similar, and this is not an uncommon reaction.
  4. Many chain restaurants have nothing that you can eat.  There’s nothing I can eat at McDonalds; even a plain hamburger has wheat in it (as a binder).
  5. Some restaurants are fantastic.  Chipotle saves my life on a regular basis.  It is reliably good, gluten free, and safe to eat.  Do watch when they prepare your bowl though…sometimes the cheese will migrate into the salsas.  If I see a piece of cheese in the salsa, I ask for fresh salsa.  See #2.
  6. Panera also has some good options.
  7. Noodles has gluten free noodles (two kinds) that they will make any dish with.
  8. Most “mom and pop” breakfast places/diners can accommodate you if you order carefully.  Explain the issue.  They’ll listen.
  9. Don’t be afraid to explain the issue.  I’m allergic to dairy too, and you have no idea how often I say that I have a dairy allergy, then follow up with, “please cook the eggs in oil, not butter,” and have the server say something like, “oh—butter is dairy.”  Butter is dairy.  So are sour cream, cheese, and a myriad of other things.  Talk about common things that you need removed or kept away from your food.  People associate dairy with milk–not necessarily everything else.
  10. On that note, don’t just order gluten free.  Make sure you place the order with clear indications.  If I’m ordering breakfast, I’ll order it gluten free, and then ask for it with no toast.  If I’m ordering a salad, I’ll order it gluten free, and ask for no croutons.  Don’t worry about repeating yourself.  A surprising amount of the time, restaurants will prepare a “gluten free” food, and then serve it with a healthy dose of gluten…unless you give clear indications to the contrary.
  11. If you get food that isn’t how you ordered it, send it back.  When I order a salad and it gets served with a slice of bread on it, I send it back.  See #2.
  12. Learn to find gluten in weird places.  Soy sauce almost universally has wheat in it.  Look for gluten free soy (Tamari).
  13. If you go to Bea’s Wok and Roll and tell Bea that you have an allergy, she will remember it forever, and will never let you order again.  She will always say, “Oh, Mr. ________, I’ll make something special for you.”  This is fantastic, and highly encouraged.
  14. Surround yourself with people who are supportive.  Friends that are willing to accommodate your disability are friends.  People who are not willing to do so are indicating their true feelings.  It’s a life lesson.
  15. Pay attention, and have others pay attention.  You have no idea how often someone will make something “gluten free”, and then inadvertently add gluten to it.  Just because you used a gluten free cookie mix doesn’t mean that you can use flour to roll out the dough.  There are some places I can’t eat, because I know that well-intentioned people just don’t pay enough attention.
  16. Learn to read ingredients before eating foods.  This is actually a good life lesson, regardless of food allergies.
  17. Learn to ask questions about your foods.  This is also a good life lesson.
  18. Try to marry someone who is an amazing, fantastic person, who is much, much too good for you.  It is also helpful if this person is an inspired chef, capable of researching and preparing amazing GF meals for/with you.  Even if they aren’t a chef, the balance of this remains good advice.
  19. Get and read gluten-free cookbooks.  They will give you ideas on what to cook, ideas on what to look for regarding foods to avoid, and will give you thoughts on how to order food when you go out.
  20. Plan your calories.  Life is different.  You cannot go hammer on the bike and then stop at a Casey’s for a piece of pizza to refuel.  Often, this means that you have to pack your food with you.
  21. If you’re caught without food, are hungry, and are in a location where all available food has gluten in it, unless you are truly starving and dying of malnutrition, it is better to just go hungry than it is to eat something with gluten in it.  The calories you take in will be more than offset by the calories that you lose through the resulting poisoning.
  22. Poisoning is not an exaggeration.  Accept the seriousness of your condition.  See #3 above.
  23. Realize that someone has it worse.  I’m allergic to gluten, dairy and oats.  But hey, I can eat eggs.
  24. Blood tests are your friend.  When you have a restricted diet, you may start having weird deficiencies.  You will start feeling crappy over time, and you may not immediately appreciate it.  Doing regular blood tests will help detect these issues and allow you to get treatment before it’s too bad.  I take a myriad of vitamins to try to keep my various levels in check.
  25. If you’re not comfortable with a given food or meal, don’t eat it.
  26. People are surprisingly helpful when you share your problem with them.  But even helpful people, in conscientious restaurants, make mistakes.  It happens.  When it happens, tell them.  Don’t be rude, but tell them–and make sure they understand exactly what happens to you as a result.
  27. Be patient.  Be elegant.  But see #2, above.

6 thoughts on “Quick and Dirty Guide to Gluten Allergies

  1. This is great, thanks for posting. I was diagnosed with a wheat, rye, barley, and dairy allergy 6 months ago, and have been struggling to make the dietary changes. I fall off the wagon several times a week. It’s reassuring to see others go through the same struggles.

    Also, I’ve been a reader for awhile, but literally JUST figured out the significance of your blog title. Nice.

    • You thought I was just a rebel, eh?

      I can totally see that.

      You’re lucky that you can fall off the wagon. Falling off the wagon means real illness for me. Good luck with the allergy!

  2. For those of you who like their oatmeal but like me can’t eat it, there is buckwheat cereal. Bob’s Red Mill is one brand.

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