Free the Gluten!

[shadesofmauve]

This morning mom and I went in for blood draws (together. Yay mother/daughter bonding :P). Yesterday, my brother was officially diagnosed with Celiac. We'd been fairly certain he had it -- he'd had the blood work and the endoscopy in November or December, but he couldn't go in to get the official diagnosis and doctor's interpretation of the numbers until January because of *waves hands vaguely and mumbles something about insurance*. Apparently his antibody numbers were off the charts.

So, my brother has celiac -- and looking back, probably has had it all his life*. A lot of the things he's dealt with -- seizures, anxiety, depression, irritability, learning issues, anemia -- may either be caused or exacerbated by this disease no one ever thought to look for, because there were so many other, obvious things to worry about and/or blame. As an infant who'd survived massive open heart surgery, everyone was just glad he was alive. When various issues seemed to get worse rather than better with time, he had MRIs done, which showed stroke-like brain damage that probably occurred in infancy, pre-open-heart-surgery. The ADHD meds to deal with learning issues can cause irritability and stunt growth. Mom and I both have depression and it clearly runs strongly in her family. There were already loads of causes to blame -- you can see why one might never think to look for anything else.

The diagnosis of Celiac is kind of exciting, because it's something that you can actually improve. Not that I assume the diet will improve everything, or be some kind of magic fix, but any thread to pull in this mess is a Good Thing.

...we'll just try not to dwell too much on how different he might be if he hadn't been effectively malnourished for 26 years.

So, that's the news with my little brother, and the reason my mother is vigorously de-glutinating her kichen -- which is highly entertaining to watch**. The reason we had blood drawn is that it's a genetic condition, and can be a apparently symptomless while still causing long-term damage. If a first-degree family member has it, getting screened yourself is wise.

Mom wasn't going to get screened, since she's going gluten free anyway to help bro, but when she demanded I get screened I said "Okay, if you will."

And that's how we ended up carpooling to the doc's office today to have a mother/daughter blood draw that managed to amuse the phlebotomist so much she ended up in stitches.

Now we have a few days to get results back, and then we can see if either of us has to go for step B (invasive diagnostic procedure). If that's positive... well, mom's going GF anyway, and I'm not too worried. I have A Plan.

It is a good plan. It's almost like I've coped with major medical surprises before. :P

---

*This is not a given. You can have the genetic predisposition for celiac without it ever being triggered.

**She has a big tub full of glutiny things from her capacious kitchen drawers (my mom loves to bake, and loves to cook, and loves to buy ingredients because she doesn't know what they are).

Dad: "This is the perfect chance to get rid of things I don't like! 'This has gluten in it! Into the bucket!'"
Mom: "No, that pile of weird stuff is the stuff WITHOUT gluten!"
Dad: "But I don't like ANY of this stuff."
Mom: *sobs* "We're only going to have the weird stuff left."

also, as E and were getting ready to leave:

Mom: "Hey guys, do you want this acorn flour?"
E: "Acorn flour has gluten?"
Mom: "No, it's just really nasty."

Comments

[lilchickadee.livejournal.com]

If your mom wants or needs any gluten-free baking resources, let me know! My sister has gluten sensitivity (that was misdiagnosed as Celiac years ago), and my sister's fiance actually is Celiac, so we've built up a pretty good bunch of recipes and resources over the years and can probably tell you/her which gluten-free flours are best, etc.

Just let me know if you guys need any sort of emotional support. I'm more than happy to do what I can. ♥

[shadesofmauve]

That's really sweet! I'd love to send mom baking resources (I'm not a big baker anyway).

I don't know about my brother, but mom and I are actually very cheerful about the whole thing, since it means a small ray of hope for him. In other circumstances I could see how it would be really emotionally difficult, but we're... honestly, we're almost giddy.

And, like I said, if *I* get diagnosed, I have a plan. The plan is to have an Extinction Burst/Binge week in which I eat all my favorite gluteny foods and cry. After that I'll be good to go!

...I'm actually absurdly cheerful about my plan.

EDIT to add: Oh, and dad has decided that his diet plan is "Gluten Free at Home Except For Beer," and flat out refuses to get tested.

[stasia]

I like your plan. It's exactly the sort of plan I'd make. Then there'd be a long and involved Testing Of Flours, because I must be able to bake. MUST.

Oh, does your family like peanut butter cookies?

1C Peanut butter (I prefer chunky)
1C sugar
1T vanilla
1 egg

Mix all ingredients well. Make into smallish balls, and bake at 350F until done - about 10-16 minutes, depending. Longer baking time is crisper cookies.

I like these for gluten free folks, and also, I have successfully used Splenda Baking Sugar for the sugar, for my diabetic friends.

I guess, if one uses non-animal egg replacer of some sort, they could even be made vegan. Golly.

I'm VERY glad your brother's been diagnosed with something that one can do something about. It's a great feeling, isn't it?

Stasia

[shadesofmauve]

Thanks for the recipe!

Mom is definitely going to do a serious testing of flours. She loves to bake. Me... not so much. :P

[padparadscha.livejournal.com]

Are you ALL gonna go gluten-free, then? (Just curious.)

[shadesofmauve]

I'm going to keep eating like I always have unless the screening test comes back positive *and* I'm shown to have a problem in later tests. Mom is going to go gluten free -- partially because my brother lives with my parents and eats what they cook, partly because people with celiac aren't supposed to wink at anything that's touched flour and it's easier if the whole kitchen is 'clean', and partly out of a sense of... it's not quite solidarity, but feeling that she can't get on his case about sticking to a difficult diet if she doesn't do it with him. (The last bit doesn't make a ton of sense, but not much between them does). Dad is looking at all of this askance and has created his own diet, which he calls Gluten Free At Home Except For Beer. We're trying to come up with a better acronym.

If my test comes back clean I suspect I'll be sneaking my dad out to go have bread. :P

[westrider.livejournal.com]

Best of luck with that, all 'round. I hope it helps, your bro could really use a break of some kind.

[sinvraal.livejournal.com]

The friend I mentioned whose sister has celiac is a vegetarian, so she jokes that when the two of them go out to a restaurant, there's a lot of negotiations about what to order so they can trade various bits. Hehe.