Browsing Category About Me

Celiac Disease and Inflammatory Bowel Disorders (crohns, colitis)

Talk about a hiatus.

it’s been awhile, gluten free friends.  Even in the last two years, so much has changed in the gluten free community and here.

last year, after the birth of my now toddler, I found myself sicker than ever.  Muscle pain, joint pain, fatigue – to the point that it was difficult to keep my eyes open, I could barely manage grocery trips and needed frequent tests between activities.  My stomach pain was worsening.  I had constant nausea. (Did I mention there was a baby running around now?)

Like with celiac disease, doctors see GI symptoms and like to just throw things at it.  We live in a health care world of symptom management and not prevention.  “It’s probably post partum reflux,” my PCP said.  “Take some omeprazole.”  Of course, that did nothing.

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When diagnosis becomes personality…

Food is inseparable from us.  We need it.  We could do without it for some time but our bodies know better; they stop functioning, they slow down processes, they limit their activity so they can survive minimally.  Our bodies do that without us.  It requires no cognition, no forethought, planning.  It just does.

With an over-abundance of accessible food in this country (poverty and homelessness excluded), we have grown to associate living with eating.  What’s thanksgiving without turkey and pie?  What’s a potluck at work without food?  What’s dinner without dessert?  We bond over meals.  We sit down at the dinner table and regroup about each others lives.  My husband and I chat about our days over dinner every night; we connect over food.  We’re having friends over for dinner tonight.

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Bonding Over Gluten – The Love Story of Two Celiacs

When my husband and I first met, we bonded over a long night of cheap whiskey and jello shots. He drank beer, I drank the whiskey. It was awkward – obviously, the alcohol helped. Even in my slightly tipsy state, I remember the 0330 conversation we were having with a friend of ours about her boyfriend situation. She was getting sleepy in front of my fire place and was frustrated with the type of guys she was dating; she felt like they never had their crap together. I remember giving her advice and I wish I remember what he said but I remember how what he said made me feel. He said something brilliant – adorable, intelligent, completely reasonable. He said something that I would have said. I looked at him and for the first real time that night, I remember my heart going pitter pat. Shortly after that moment, he kissed me for the first time…

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The Sacrifice of Nursing – The Things They Never Teach You in Nursing School.

No one wakes up one day and says to herself,

I feel like working 12 hour shifts. 12 hour shifts where I can neither have my own time to eat, pee, and where my coworkers take out their own version of ‘hangry’ and burned out on me.

No. We wake up one day and say,

I see you there. I see that you’re hurting and I see that this is hard and I want to find a way to make it better for you.

We enter the field with hopes and dreams. We can save the world and our intentions are well meant and sound. They even come with some perks; decent pay, 3 day a week work schedule and sometimes even schedule flexibility.

When you start into this field, you hear the quiet whispering — the hints, warnings, from other nurses. Be careful, they’ll say, they eat their young here. If you thought nursing school was hard, you’ll re-learn everything in your first year out of school. School was merely scratching the surface. There are so many things, though, that they fail to teach you in nursing school.

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Pregnancy Has Made Me Well-Adjusted?

Did you click on the article because you read the title?  The title reads like an oxymoron; a joke.  Who says pregnant women are well-adjusted?  Ha!  That’s sounds kind of crazy…  This woman must be mal-adjusted in her well-adjusted state!

My husband said this to me one day during my First Trimester tears.  “Pregnancy has made you well adjusted.”  We laughed about it and I had to ask what he meant… but now at 19 weeks, I think I understand.

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Flipping the Switch – Turning Celiac On

For many people, this has been their lives.  They’ve had symptoms from the beginning – and sometimes, they’ve never known they had symptoms.  Me?  My celiac story isn’t quite like that.  If you didn’t start off with celiac disease, the theory is that stressful events are the culprit.  It’s basically like turning on the lights in the house – Celiac walks in the door and opens all the lights.  Your HLA gene has turned on.

I got lucky.  My primary care doctor had, two weeks before I got SUPER sick, been to a conference on celiac.  He said, “your symptoms aren’t normal but let’s just check.”

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Will the Baby Explode? Concerns for the First Time Celiac Mom

I have celiac disease.  He has celiac disease.  We’ve made a baby.  It’s still growing inside but I’m already thinking about it.  What about the baby and celiac disease?!

So they say that you can be at risk for celiac disease when there is a first or second degree relative involved.  The rates are up to 5-10% (I believe my doctor said as much as 15%) if you have a relative with the autoimmune condition.  Celiac disease is common with two gene types: HLA-DQ2 and HLA-DQ8.  The numbers assume about 95% of celiacs have HLA-DQ2 and the last 5% have DQ8. Having the genes doesn’t guarantee celiac disease but it certainly makes it a more plausible scenario.  As it stands right now, I’m the only one in my family with this friendly auto-immune condition.  And so is he.  I am not, however, the only one in my family with auto-immune conditions.

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Hello, world… I’m here!

Well, how did that happen?  Do most people just wake up one day and say, it sounds like a good day to start writing a blog?  I’ve been thinking about this since I got diagnosed back in 2013.  It’s been there and had several iterations before you found me here.  This baby, though?  He, she, it, we don’t know yet — has changed everything.  It’s been one thing when the celiac impacts you — simply me.  It became another thing when my at-the-time boyfriend got diagnosed 2 months later.  But it was us.  It was us against gluten.

But now… I’ve been given 8 months to think about all the things out of my control with a little one on the way.  It’s our first and while I’m a nurse by trade — raising a baby is not on the list of things covered in nursing school.  Raising a baby that has a high propensity for celiac disease and not willing to bring gluten in the house to find out… is definitely not a course in nursing school.

Leave a comment.  Say hello and bear with me as we figure this out together.

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