As I’ve mentioned before, May is Celiac Awareness Month.
The link lists some fast facts that tell you a little bit about the disease.
It’s so important to make these Celiac conversations happen.
I’m sure you are ALL tired of hearing about it so this is my post of the month. I also have a bad memory so if there was another one, I’m really sorry.
Unfortunately it is in my face every moment of my life and every single thing I do is Celiac. I’ve made it just so much a part of me that I don’t stress or sweat about it so much anymore but making people aware still needs to be done. And sooner rather than later. Otherwise people will continue to offer us croutons on our gluten free salad.
Why is that so important?
Are they just being nice? Yes of course.
But if they’re doing that, then what else are they doing?
Are they just taking the croutons off if they forget?
Are they cooking on the same pan?
Bringing things out on a shared plate?
Mixing up the pasta?
Forgetting to mark “Celiac” on the order so the chef doesn’t take me seriously when cooking my meal?
I make a really big deal about ordering. I over order. I make sure to explain I’m Celiac, I’m not on a fad diet, and I really really appreciate the extra care you take with my meal.
And I don’t care if you have to charge me a few dollars more for my gluten free dinner. It takes more work to prepare and it costs more. If you’re going to do it right, it’s worth the cost to me. I’m talking to you, P.F. Changs.
Even when people grumble and growl and make us uncomfortable and make us feel like we’re imposing on their lives we need to find a way to let them know…the test is worth it. This is true in my world. I feel like because I’M Celiac I want everyone ELSE to be Celiac. On the contrary, I want to make SURE you aren’t, so everyone’s life is better. Educating family about this disease so they are more aware of their own health is the most important thing to me. The longer a diagnosis is put off the higher the instance of added issues and symptoms. When you have Celiac disease you have a higher chance of having other autoimmune diseases.
- An estimated 1 in 133 Americans, or about 1% of the population, has celiac disease.~source
- Celiac disease is hereditary, meaning that it runs in families. People with a first-degree relative with celiac disease (parent, child, sibling) have a 1 in 10 risk of developing celiac disease.~source
There are four tests for Celiac.
Yes, that’s right. Four. They REALLY want to be sure.
- Blood test
- biopsy (they consider this the gold standard)
- genetic test
- going truly gluten free for a certain length of time to see if you feel better
The blood test unfortunately can show up negative when in fact, you are positive. And vice versa though that is not quite as common.
Doesn’t that sound SUPER helpful to the cause?
Alex Michael got tested because he had enough symptoms it was raising flags for both of us. Frankly he just wanted to take the nagging thoughts out of his head. He’ll say he wanted to take the nagging mom out of his head but I don’t nag. I usually will just say something to him and plant a suggestion. LOL.
He tested negative (yay) but of course…that just made me question the whole process…
Yesterday I called him to say I had this weird symptom and I know he has it too. Yup. My friends, Mo and Ria both said they have it. Raynaud’s Syndrome. Alex has it pretty bad and has had it for years. We didn’t know what it was until Mo told me when I showed symptoms. When it showed up for me I thought what the hell this has to be Celiac. So I did a little research. This is when your fingers (or toes, apparently) go numb and white with cold (or stress..random). Check this out…Alex’s totally do this. So weird…
Raynaud’s is commonly attached to an autoimmune (hello celiac) but also will pop on due to other causes. If you smoked, if you have Carpal Tunnel, etc. But this one jumped out at us. If you broke your wrist. Whoa hello did he. Alex Michael broke his wrist but good when he was in high school. So he could easily have developed this little gift from that. The gift that keeps on giving.
Or…he could have Celiac. LIFE ON THE EDGE.
Lesson of the day:
If you have a family member with Celiac…get tested.
There. I am off my soapbox.
Thanks for listening!
Twenty nine years…he still makes me laugh SO hard. He is my favorite person. That’s not such a little thing.
But it is the little things…