Parting (with Gluten) is Such Sweet Sorrow…Or Is It?

Excuse me while I have a small rant.

(If you are new here, welcome!  You may have heard of my stomping grounds from the Advance for Physical Therapists patient handout on celiac disease, or the MediaPlanet insert on celiac disease in the Chicago Tribune.  Thanks for coming by, put up your feet and hang for a moment here.)

Humor me for a moment.
Imagine this…

You’re in the doctor’s office.  You’ve been through a battery of tests, you feel like doo-doo on a stick.  Your hair is falling out, your body aches, and you have no energy.  You’re scared to death, because so many of your friends and acquaintances have either been diagnosed with cancer lately, or know someone who has been diagnosed with cancer.  You sit, on the hard chair, and you wait for the doctor to enter the room.  It seems like an eternity that you are waiting (and depending on the doctor it might be.)  You really want to try to read your chart, but they’re slick and have it on the other side of the door.

So you wait.  And you wonder.

Am I sick?  Is this going to be bad?  I know I’m sick, but exactly how sick am I?

Photo credit Barky

And you wait some more, and the worst case scenario in your head keeps getting worse.

Finally the doctor enters the room and shakes your hand.  “How’re you feeling?”  Just dandy, doc, that’s why I spent 2 hours of my life in your waiting room, and my hair is falling out. But what you really say is “OK.  What did the tests say?”

He flips open your chart and rummages through the papers at the front.

“Let’s see here…negative, negative, normal, good, oh wait.”

An eternity passes.  Maybe 5 seconds.

“You tested positive for celiac disease.”

What the $%*& is celiac disease? (If you seriously would like more info on that, check out What the Heck is Gluten and What is Celiac Disease?)

If you have a good doctor, this is where they give you solid information, and maybe a referral to a dietitian.  If not so good, or just poorly educated, you might just be told to not eat gluten.

I have seen/heard people who are just furious that they are no longer supposed to eat gluten, and have to give up (gasp!) “regular” food.

Seriously?

No, really.  Seriously?!?!

Think back.  When you were scared spitless in the doctor’s office, and you thought you may be dying-is bread (insert glutinous favorite food of your choice here-pasta, cereal, bagels, etc) really that big of a deal?

No, really.  Think about it.

  • Do you have to go through chemo?
  • Take lots of toxic medications?
  • Be on medicine for the rest of your life?
  • Be separated from family and friends?
  • Do you have to have surgery?
  • Do you have to go through physical rehabilitation?
  • Are you sentenced to a life of chronic pain?

No?  Didn’t think so.

All we have to do is not eat gluten.  We have the choice, and the ability, to heal ourselves.  A diagnosis of celiac disease can be a blessing in disguise.

It’s all in how you choose to approach it.  And yes, it is a choice.

You choose.  In the immortal words of Bruce Springsteen, “you gotta learn to live with what you can’t rise above.”

Why just live with it when you can rise above, and let living gluten free enrich your health and your life.

It’s a beautiful “burden.”

You choose.  Your perspective on celiac will color every bite of food you take.

You choose.

Choose to see the huge, wonderful, varied world of naturally gluten free foods.  The bounty of meats, poultry, fish, eggs, veggies, fruits, nuts, seeds, oils, etc and so on and so on!  Look at what you CAN eat, not what you can’t.

For more reading about my philosophy on living gluten free:

The Easiest Gluten Free Diet

And if you want more, Gluten Free and Fit 101 has a lot more in store, including more ideas for dairy and gluten free protein powders.

If you STILL don’t have enough, get my free nutrition guide.

And that should give you enough reading for a while.

If you STILL want more, or you just want a step by step, simple, checklist  approach to cleaning up your diet, check out 7 Quick Start Tips to Living a Healthy Gluten Free Fit Life.

So what’s your choice?

Filed Under: celiac diseaseGluten Freemotivation

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  1. Oh, Erin, I love you for writing and sharing this post!! Beautifully written … the whole scenario and your sentiments. Almost everyone decides that being diagnosed as celiac or with non-celiac gluten intolerance/sensitivity is a gift in the long run. Why not embrace it from the beginning? Sure, one has to grieve just a bit, but grieve and then let it go. And, don’t look back!

    Are you home now married lady? Or still in the beautiful Smokies? I hope you’re still relaxing and loving life. :-)

    Hugs,
    Shirley

  2. monica says:

    Kudos Erin. This really needs to be said…a lot. It does take time and a different mind set to become not just ok with eating gluten free (and maybe casein free or low lectin etc, etc, but the points you make about not needing chemo, surgery etc are huge and hopefully allow some to see this in a much better light.
    I have been gluten free for over 5 years now and when people find out, they nearly always tell me how sorry they are for me. I felt pretty sorry for myself too at first, but these days, I shrug it off and tell that feeling so much better makes it all worth it and it’s just plain true. Why would I miss eating something that makes me sick?
    I hope your words of wisdom help others. I wish I could have read this when I was first diagnosed!

  3. Erin says:

    Hi Shirley!
    We arrived home last night. It was amazing, we had perfect weather, and a perfect wedding. So incredibly happy :)
    We did do quite a bit of relaxing, hiking, and just enjoying life. Now we prepare for the big party on Saturday for our family and friends.
    Anyway-yes, I agree that a period pf mourning is certainly normal and acceptable. And then GET OVER IT! ;)
    Perspective shapes it all.

  4. Erin says:

    Hey Monica!
    Thanks.
    I’m sure some people won’t be happy with my opinion, but that’s okay. I felt as if it needed to be said.
    We have to make some changes of course, but nothing so life changing as having a life threatening illness.
    I also have been told how sorry people are, and it makes me giggle. Like you, I can’t imagine missing something that makes me so, so, sick.
    I hope others find solace and comfort in the article also, especially those first diagnosed.

  5. Erin,

    First off, beautiful wedding photos and congratulations! I love it that you had the doggies involved. And, your dress was over-the-top gorgeous — as were you! Thanks for sharing the love with all of us.

    Great post and I couldn’t agree more. But I’ll let you do the ranting, since you do such a feisty and humorous job with this stuff. =)

    It’s such a “no big deal” thing to me that I’m always surprised when people are ready to jump off a cliff because they can’t go to Dunkin’ Donuts anymore. I’ve been eating like this for a decade now and it’s a gift to be introduced to all this abundance we have available. Wonderful GF grains that I’d probably never know about. Things like teff and Montina. It’s wonderful.

    If you’re going to “get” an autoimmune disease, pick this one! We’re the lucky ones.

    Peace, love and happy marriages!
    Melissa

  6. Erin says:

    Melissa!
    Thank you so much. We had just an incredibly wonderful experience.
    And I couldn’t agree more on the “choose your own adventure” when it comes to an autoimmune disorder. I think all of us in healthcare probably have their most-feared autoimmune disorder. Mine is severe scleroderma. Scares the bejeezus out of me, and my heart goes out to those who deal with it every day, I think they are amazing.
    Today is our “wedding celebration” party. Since we couldn’t have the whole family/friends thing at the ceremony, we’re having a big bash here at the house.
    Full report and pics of the gluten free cake to come! :)

  7. Rogene says:

    Rant anytime you want Erin. This one is really needed. Those of us who believe this need to say it over and over and over again. There are so many celiac folks out there who seem to “enjoy poor health” as my mother used to say, but we have to keep saying it as well as living happy, healthy gluten free lives. Leading by example is so important. Keep up the good work!

    Best wishes on your marriage. You certainly chose a beautiful place to get married.

  8. Erin says:

    Thank you Rogene. That’s an excellent observation by your mom-it’s odd to me, but it almost seems like a badge of honor to some, almost as if “let’s see who can suffer the most!”
    Gluten free life, and now gluten free married life, is good.
    Thanks for the wedding wishes :)

  9. Thank you. I do agree. I spent years desperate to find out what was wrong with me. Allergists, Endocrinologists, Cardiologists, Pulmonologists, etc. And all it took was for me to not eat wheat/gluten? I’ll take it! My #1 symptom if I ingest gluten is that I am unable to breathe properly for 24+ hours so I sure know if I have been exposed.

    People ask me all the time how can I stand it. I just smile and say Easy! I can BREATHE!!

  10. Erin says:

    Welcome Debbie!
    I’m glad you pointed out that you have pulmonary problems when you ingest gluten. So frequently we forget about the other systems that are affected, and focus only on the potential for GI upset. It truly can affect all of our systems!
    Glad to hear that you are feeling better, even though it took a while and many doctors!

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