My Story

I’m guessing some people won’t like my blog because of how I write. I write basically exactly how I would speak. I’m not the kind of blogger that goes back and edits and re-edits their posts before hitting that daunting “Publish” button. I find typos. I go back and read things and think “hey, that was one well-written post” and others I think “why in hell did I press go”.. who knows what I will look back on today’s post as given I’m still in a gluten-induced-fog.

So why I’m picking today to tell my story, I’m not sure. But, it seemed as good a day as any, and I think that the more stories out there, the better.

All my life, I was always what I would describe as “unwell”. I got sick often – bronchitis, colds, weird viruses. Through all of it, I consistently had stomach issues. I’d feel like I was going to throw up. Or have to run to the bathroom; or both. I never felt great. I always wondered if I’d make it to the fun events or would my “bad stomach” interfere and land me in bed. I slept a lot; I still do. I got brutal headaches, I suffered from undiagnosed depression and anxiety, I was constantly exhausted and no one knew why.

Most people thought I was a hypocondriac, or a wuss, or both. Mostly, no one believed me when I said that I just wasn’t right. My parents knew something was wrong, but doctor after doctor kept saying I was okay. I was tested for everything and diagnosed with random things. It honestly was a little bit hellish. It had a huge impact on my childhood and my teenage years.

In my years of seeing doctors, I also saw 2 gastrointerologists.. none diagnosed me.

And then one day, after the birth of my second child, I read a magazine article. I felt like this giant light bulb went off in my head. I showed it to my husband and asked him why someone wrote about me without interviewing me. I called my doctor and made an appointment.

I told my doctor that I wanted a blood test for celiac because I read an article and it sounded like me. He seemed skeptical at first, asking me my symptoms and why I would think I had celiac. He agreed that a blood test would at least rule it out so why not. Then I put off going for the test for 3 weeks. I was convinced it would come back positive, and I was scared.

I went for the test. A couple of weeks later I was called back into the office to discuss my results. My doctor said “So, your test came back and we definitely need to refer you to a specialist.” I said: “So signs point to celiac?” and he said “Well, normal levels are 7-10. Your are 1360.” I think if I was prone to fainting, I probably would have fainted then. But I didn’t, instead, I think I did an inner dance. It was like validation. Years of an inner fight that had finally been won. I had celiac disease. There was a NAME for my issues!

I went for a scope less than 2 weeks later and my disease was staged at 30 years along. I was 30 years old at the time of the scope. I had significant damage that would take a long time to heal. But I could heal. I could get better and finally lead a normal life. I could eat like a regular person (sort of..), and not worry about my “bad stomach”. (I should interject that I was so scared of not feeling well that at my own wedding I had rice for supper while everyone else dined).

I went gluten free right after and I’ve never looked back. I’ve had ups and I’ve had many many downs. I’ve gone through rather extensive learning curves. I’ve had some horrific failures in the kitchen that I would rather forget about. But I’ve also had some amazing successes, like the
Fudge puddles in the GF Cookie Swap on Facebook.

But best of all, I’m healthy. It’s something I always took for granted.. always feeling slightly off, and thinking that was normal. Don’t settle. Always strive for more.

Maybe tomorrow I’ll post about my daughter’s story. She’s celiac too, and at 4, she knows what gluten and wheat are, and how to tell others that she can’t have them. Pretty amazing.

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2 Comments (+add yours?)

  1. Nicole H.
    Jan 05, 2012 @ 02:00:38

    Wow. That's tremendous. As someone who was also one of those unhealthy kids, I can completely relate to how it changes things growing up. What relief you must have felt to finally be diagnosed! Has much of the damage been undone since discovering the cause?

    Reply

  2. celiacmama
    Jan 05, 2012 @ 18:20:20

    Hey Nicole!Other than my being glutened the other day, I'd say that the majority of the damage has been undone. I have another scope on Monday so I think I'll find out more then! I certainly feel like a different person!!

    Reply

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