We are the 1%!

one-percent celiac disease

No…it’s not what you think. There will be no OCS (occupy celiac street???).

But with celiac disease affecting just a little less than 1% of the population, I think it’s time to give a little love and attention to our plight. We are not asking for pity…just a bit of an understanding of what us celiacs go thru on a daily basis.

We are the 1% who…

  • Will never taste the joy of a true NY bagel.
  • Will never savor another Chicago-style pizza.
  • Will never get that warm and fuzzy feeling from a Brooklyn Lager.

We are the 1% who…

  • Must look up ingredients online to see if a product is gluten-free each and every time we are offered something new to eat.
  • Spend about three times as much money on gluten free groceries.
  • Have to give a speech to the server every time we go out to eat (and still worry the entire meal).

We are the 1% who…

  • Sing Happy Birthday, but don’t celebrate with a piece of cake.
  • Order the same thing at our favorite restaurant every time we go, because we know it’s “safe”.
  • Must eat our gluten-free pasta in one day, because the next day it’s as hard as a rock.

We are the 1% who…

  • Don’t feel well and wonder “Did I get glutened or am I just sick?”
  • Begin to forget words, names and dates and realize “Yep, I was glutened.”
  • Must go back to our previous 9 meals and figure out how we got glutened.

We are the 1% who…

  • Usually give up dairy as well.
  • Usually give up soy as well.
  • Wonder “What the hell can I eat?”

We are the 1% who…

  • Go to an “all-you-can-eat” buffet, which quickly turns into a “I’ll-watch-everyone-else-eat” buffet.
  • Miss our occasional Sunday brunch of french toast or pancakes.
  • Long for the day of spontaneous living.

We are the 1% who…

  • See a bread crumb in our gluten-soy-dairy free butter (yum!) and wonder “Is that an Udi’s crumb or did one of my kids just contaminate it?”
  • Watch our daughter put her hand in the ice cube tray while eating a bagel.
  • Observe a helpful guest wash our gluten free pots with the wrong-colored sponge.

We are the 1% who…

  • Just don’t feel “right” a lot of the time.
  • Hate complaining about it.
  • Wish there were a cure for celiac disease.

Now get on out there a hug a celiac today!

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25 thoughts on “We are the 1%!”

  1. My “affliction” isn’t in the 1% range, but so much of this could also apply to diabetics. There is a lot I won’t eat again, unless I want to give myself neuropathy. But cake…oh there is lots of gluten free cake! I make mine with almond and/or coconut flour, with are both low carb and gluten free. No reason to miss out on cake!
    Bagels and pizza…now that’s a little tougher!

  2. Hi Gluten Dude,

    I completely understand how you feel from this post! I’m not diagnosed as Celiac, but I’m gluten intolerant, as well as having allergies to dairy and eggs as well. I can remember the first time that I went grocery shopping after my diagnoses, full of hope after finding a reason for feeling so crappy, and then almost stating to cry in the cookie aisle when I realized that I would never have my Mom’s homemade chocolate chip cookies ever again.

    I was searching for some inspiration for my latest blog post, and I got it from this post! This post is the reason that I do what I do, and thank you for telling the truth, no matter how painful it can be. I’m adding you to to my regular blog reading, and I hope that you check out my website as well. Your comment section isn’t seeing my website as a “valid URL”, so here it is


    All the best,

  3. Thanks for the kind words Ashley. Having these types of issues is indeed a journey, isn’t it?

    You’ve got a great website and I love your story of how you got started. It never ceases to amaze me how accurate the term “you are what you eat” is.

    By the way, what is “ringette”??

    1. Haha, ringette! Ringette is a sport that is played in Canada, Finland, and Denmark. It’s usually a woman’s sport (although I know some boys who have played) and it’s similar to hockey. We wear ice hockey skates, and play with what looks like hockey sticks with the end cut off, and use rings instead of a puck. Check out this youTube video


      You obviously read my story in detail if you picked up on ringette!!!

  4. I LOVE your blog! I was diagnosed with Celiac, 2 days ago. Have been eating gluten free for 19 days…previously had will power issues with food, but being diagnosed has changed my brain. I can honestly say I never want to eat gluten again. Almost cried in the McDonalds drive through with the fam, other than my emotional outbursts, I have surprised myself knowing that I can do this! Your blog is my fav so far! Thanks for being so human:)

    1. No one has ever called me human before. Thank you for that ๐Ÿ™‚

      Glad to hear your willpower is so strong this early on. Usually isn’t the case.

      Keep it up and good luck to you!

  5. I was recently invited to go the Brooklyn Brewery with some friends so I decided to do a little research about whether or not I could participate. According to the Brooklyn Brewery website, “None of our beers are 100% gluten free. We are only able to quantify up to 5 ppm of gluten and confirmed that Brooklyn Lager has less than 5 ppm of gluten.” Interestingly enough, the Celiac Sprue Association only awards products their seal of gluten free approval is there are less than 5 ppm of gluten. Using this wonderful logic, can one assume that Brooklyn Lager is safe for celiacs? What do you think?

    1. That’s insane Emily. There is no way in hell their beers could pass the gluten sniff-test. But a celiac can dream, can’t he?

      I do find your logic quite interesting though!!

  6. Ah the joys of Celiac! I absolutely love your blogs gluten dude! I can so relate being diagnosed in July 2011. I have 2 boys and a husband who are not celiac and it gets crazy here with trying to keep everything from being crosscontaminated with lil fingers. Oh and not to forget our dog which has now got a new name “lil gluten dog”. My sons came up with that one. I get called Silly Yak quite a bit after ordering at a restaurant and making sure the staff understands my needs. My son always says, ” Geez mom, do you really have to be a silly yak when ordering? My 4yr old just bursts out laughing because he is thinking of a yak making a silly face. Then people stare at us all crazy because we are rollin. Oh the joys of surrounding yourself with lil jokesters. Too funny!

  7. What a nice, factual (but no crying in your beer) post in regard to what hurdles people with celiac experience day-to-day! Thank you for that! Nice Job! ๐Ÿ™‚

  8. I really appreciate the fact that you mention the memory issues! I have such a hard time coming up with words sometimes and its so frustrating. Even when I haven’t been glutened I feel like I’m still struggling to recover my memory skills.

      1. I too, was unaware of the memory issues associated with Celiac disease. Could it be the days that I feel completely spacey and barely able to do my job are days I got glutened?

  9. Kimberly Atherton

    This says everything! Thank you, thank you, thank you! I posted it on my FB for our friends and family to read. I’m tired of explaining it.
    The Athertons~

  10. I very much appreciate this blog! Newly diagnosed it has been a LONG road, I have been gluten free for only 4 months. I am still struggeling with cross comtamination, and getting glutened. The humor expressed here is comforting. I have yet to hear anyone talking about DH symptoms. Any one?

  11. I always feel better after reading your blog and the comments. Haven’t eaten out since I got sick after dining at my most trusted restaurant two months ago. Going on vacation soon though, so I guess I’ll have to try harder to be a good “Silly Yak.” At least I can think of that and smile to myself!

  12. Your points are well taken and understood by all of us! Re SOY, I wish someone would explain to me what the problem is with soy? Butter: I have been told by nutritionists that many people who can’t tolerate dairy can handle butter in baked goods as it changes chemically (?) – You can certainly enjoy pancakes and chocolate cake using other ingredients like almond flour, coconut flour, oatmeal flour etc. Does it take research? Check out Jules Shephard or Gluten free on a shoestring. Plenty of vegan/gf bakeries do a land-office business without using dairy or eggs. Earth Balance (same product as Smart Balance but more expensive) is a great substitute for butter. Blue Diamond Almond Milk works fine, but don’t use Coconut Milk for baking- the canned stuff is fine for curry. If you really want to try other dishes at your favorite restaurant, talk to the chef some afternoon when they have time and find out what he can do for you. Many are more than willing to accommodate regular customers and will work with you.

  13. So much yes! Diagnosed back in October 2017 and wow what a different world Celiac is. Have been ever thankful finding others so this world doesnโ€™t have me feel so โ€œalienโ€.

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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 didnโ€™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, Iโ€™ve done my job.

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