Celebrating Celiac

 

 

Me and Peggy G

I have been gluten-free for over a year now.  It means so much to have my energy back, my brain function back (well, most of it), and migraines that are few and far between.  After living with migraines my entire life, I just came to grips with the fact that I’d have them forever and I learned to push through them for the most part and do what I needed to do rather than hole up in a dark room like I wanted to do.  Oh yeah, that pesky IBS I developed after moving to Kentucky…gone.  The spells of vertigo and heart palpitations I experienced off and on since college…gone for the most part.

 

While I haven’t been diagnosed with Celiac, I have a strong suspicion that when I finally get gene testing done, it will be positive.  Unlike many people diagnosed with Celiac, I went a bit backwards and by the time I realized gluten was my problem, I didn’t want to start eating it again to go through all the blood tests and biopsy.

It’s funny that before I discovered gluten was my underlying health problem, I made several friends who are diagnosed with Celiac.  I remember, Peggy G’s battle with her health and how much better she felt after getting rid of it in her diet.  I also remember a phone conversation with her about it when she was trying to navigate eating gluten-free.  “It’s in everything!” she told me.  She came to visit us once after the diagnosis.  I can’t even remember what preparations I took to make sure we had what she could have.  Other than coffee.  Take away her coffee and watch out.  Better yet, hide!   Oh I know why my memory is so fuzzy about that now.  She came just weeks after I had my gall bladder removed and I was still in quite a bit of pain.  I still had a fun time with her!

 

Mr. Deem and The Most Interesting Man In The World

 

Another friend, I’ll call him Mr. Deem, explained to me that he was “allergic to flour” when I first met him.  I think that was just an easy explanation to make sure he didn’t have anything with flour in it.  I felt bad for him, so during a gathering, I felt it wasn’t fair for him to miss out on dessert.  So, I made bibingka, a Filipino mochi-like dessert. He loved it and I made sure he kept some of the leftovers.  I guess you could call him one of my inspirations for being an adventurous eater.  He would go out to ethnic restaurants and try things most Americans won’t touch.  Around the time I stopped eating gluten, he was adding it back in.  It makes him grouchy though.  Or at least that’s what I’m told.  Regardless, he’s a fun guy.  Every time I hear “Girls Just Wanna Have Fun” I think of him singing it at karaoke and I smile.  This picture of him was taken the weekend before Chaz and I moved to Cincinnati.  Can’t wait to see him and the rest of our friends again.

 

Me and Caity

 

Caity was diagnosed with Celiac about 6 months before I went gluten-free.  She suffered her entire life and went through repeated testing for what ailed her since she was a toddler.  Despite being under the care of some great medical institutions, like Johns Hopkins, every doctor missed the diagnosis.  Finally, she went to an appointment with a nutritionist (which required a lot of coaxing for her to actually go) and the nutritionist caught it.  Much like my naturopath caught that the Synthroid was making me worse and none of the doctors I was seeing could figure it out.  I have to brag on Caity a little.  She’s finishing up her pre-med degree this semester and will be starting medical school in the Fall.  She an amazing young resilient woman who doesn’t always see how strong she is.

Caity came to visit last Summer for 4th of July weekend.  Even though it was a short trip, I planned a lot of kitchen time for us because she doesn’t like to cook.  No wait, as she says, she’s too lazy to cook.  You can see one of the recipes I taught her while she was visiting here.  She was supposed to visit Thanksgiving week, but she changed jobs which would only let her come for the weekend.  Then Chaz and I moved and I started a new job which wouldn’t give me time for that weekend.  Hopefully, she’ll be coming to visit this Summer before she starts med school.  I have more kitchen time planned for her!

May is Celiac Awareness month.  Keep that in mind.  On May 4th, there will be a gluten-free labeling summit in Washington D.C.   After four years, the FDA still has not finalized standards for adding barley and rye to food labeling, which would help those of us with Celiac and gluten intolerance immensely when buying items that are not naturally gluten-free.  Wheat is already part of the food labeling requirements, but barley and rye are not.  Because of this, we have to know what each ingredient is on the list and if we aren’t sure, we have to call the manufacturer and hope we get a rep that knows what they are talking about.  Can you imagine how much time we spend on this alone?  And it’s not just food.  It’s medications, supplements, and personal care products, too.  Please visit the 1 in 133 website and sign the petition.  You can also make a donation on the site.  Shirley Braden at gluten-free easily recently did a post on this event after a conversation with Jules Shepard, one of the co-founders).  This is very important to all of us in the gluten-free community.  Chances are you know someone or more than 1 someone (like me) who can’t have gluten.  If you don’t, chances are they haven’t been diagnosed yet.  I’m sure you know more than 133 people.  I sure do.

 

 

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3 comments

  1. Outstanding post, Debi! Thanks so much for sharing your story and so many others to inspire folks to take action. Celiac, gluten intolerant, gluten sensitive or not, we can all sign that petition, contact our folks in Congress, and even make a donation if we can. You just showed how important this cause is–thank you so much!

    Shirley

  2. Pingback: Java Chunk Ice Cream «


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