the facts: In the general population, 1 out of every 133 people have celiac disease (aka. gluten intolerance). Caroline's bloodwork showed that she has a genetic predisposition of a 1 in 10 chance that she will have celiac in her lifetime, even if she WASN'T having any symptoms. (very high risk category) Her form of alopecia (alopecia totalis- loss of all body hair from the shoulder up) and eczema on her skin are both BIG signs that she is facing an autoimmune problem of some sort. (which we already knew) So this could be alopecia caused by celiac, or it could just be alopecia on its own. The rest of the bloodwork was not conclusive to celiac, so the doctor gave us two options on how to continue. Okay, real quick:
Option #1: Put Caroline on a gluten-free diet for 3 months, do a blood test again, then see what the numbers do. (see below for what a gluten-free diet is) If she DOES have celiac, perhaps her hair would begin some regrowth. We'll see. At the end of the 3 months, then we'd do a "gluten challenge," where you re-introduce a little gluten into her diet, and then see what the numbers do on bloodwork.
Option #2: Have Caroline undergo a short endoscopy surgery (under sedation) where they would biopsy tissue from 3 places (her esophagus, her stomach, and her intestine) and hopefully they would be able to "find" the celiac, if it is there. (Celiac is a patchy disease, so even with doing a biopsy in 3 places, it still might not show up, even if it is there.) Anyways, if it DID show up, we'd know it was definitely celiac & they'd say "go on a gluten-free diet for the rest of your life." If it didn't show up, my guess is that Marc & I would probably still wonder what would happen with a gluten-free diet. And we would go on the diet anyway.
So can you guess which option we chose? Yep, after writing out a pro & con's list on the ride home, we chose option #1, the gluten-free diet. Let's skip the unnecessary cutting on our 2 year old and get started on a healthy plan right away!! My thought is that even if it's NOT celiac, this has to help her little immune system calm down somewhat, right?
Well, after such a big day and a big decision like this, we couldn't jump in quite yet, so we had an official "last supper" filled with GLORIOUS GLUTEN together. :)
You got it. A big ol' pizza and a salad with lots of CROUTONS. :)
Tomorrow morning we begin gluten-free.
Here's a few things that I quickly pulled together to give you guys an idea of what you can eat that's gluten-free: any fresh fruits. any fresh vegetables. any fresh meats. (not shown) any rice or rice product or potato or potato product. Just no breads or wheat/oat/barley/rye products. (but now you can buy "GF" pizza crust mixes, GF pastas, GF brownies and cookies, GF bread, and just about anything else you can think of!)
It's definitely a do-able diet, but much more expensive and much, MUCH more inconvenient. You have to use separate cooking utensils. You have to use separate toasters, peanut butter jars, butter dishes, etc. Eating out is almost impossible, because you have to know exactly what seasonings are being used, whether a utensil has touched an ingredient with gluten in it, etc. Even a ketchup bottle has probably touched someone else's bread before. You can't cheat ONE BIT.
But as expensive and inconvenient as it all is and will be, I love my daughter. And I'm willing to do anything and everything in my power to give her little body every opportunity to get better. Right now, we feel relieved to be doing something and to have a plan, yet exhausted and overwhelmed at the major changes we face. (anyone with EASY GF recipes & ideas, please send 'em this way!)
So thank you for all of your prayers. We are gonna NEED them now! SO many overwhelming thoughts go through my mind:
- what am i going to feed her?
- can she have this? can she have that?
- i have SO much to learn & figure out right NOW!
- how will we handle certain social situations with food?
- how will we eat out? (if you know us, you know we LOVE to eat out) :)
- how will SHE handle the small changes?
- how are WE gonna DO this? (i refuse to cook 2 separate meals each mealtime)
I realize this post is getting way too long, so perhaps I'll stop here and say "to be continued..."
Starting tomorrow, we're gluten-free.