Tuesday, February 11, 2014

What celiac looks like, without photos. You're welcome.

When I started this blog years and years ago I named it because we were just learning to deal with my sons dairy allergy. But still eating cake. And living a wonderfully blessed life.

Fast forward just a few years and I removed all my old post and became more selective about what I posted.

Add a few more years and you end up where we are now. A family with bigger kiddos, a husband diagnosed as diet controlled diabetic, a wife with gluten issues, a son with dairy sensitivity and a daughter who is not interested in any sort of testing and will just deal with her issues because she likes "normal" food. But still blessed. Still living the cake walk.

When I tell people, "No, hubs doesn't want you to order a birthday cake for him because of his diabetes" people stop and take note. They're quiet. I don't go into detail to explain that he has worked for years to get to a place without constant finger pricking and recording or that he's off all his medications due to self generated diet and exercise plans. I don't have to. No one bothers to ask.

With my son when I tell them he has issues with dairy they might ask if he really has issues with dairy or if he's lactose intolerant. (For the record, it's all cow based dairy.)

When I say I'm on a strict gluten free diet I get more than just a few sideways glances. I totally understand. If you could rewind my internal tape you might find me giving people some sideways glances.

The problem is, no one sees me sick. Or hardly any other celiac sick. It's an illness behind closed doors.

The irony is I'm very sick today as I type this. And I thought earlier, maybe I'm doing this all wrong. Maybe I should explain what this is like so people can understand what loved ones are going through? It's worth trying.

Sometime in the last 24 - 72 hours I've had gluten. I've been mostly at home but I've been out a lot too. I had a busy weekend. I remember hearing my belly roll and looking at my husband like, "What on earth? I haven't heard that in a long while!" before the channel in my brain changed and I went onto the next thing.

I woke up in the middle of the night with a strange heavy sensation in my stomach. Like someone had put a heavy block on top of my abdomen. This morning I woke feeling full which I knew was misplaced because I was so busy last night all I ate was apples and peanut butter. The lack of appetite should have warned me but I missed it.

So this morning I sit up. The room spins slightly. I'm dehydrated. Like I've been out on a bender. My stomach lurches and I sit very still waiting for the shifting to stop.

For the next three hours I spend time in and out of the bathroom. Randomly the room with shift with vertigo and then it passes. Again and again. My head feels dull and heavy.

Finally I'm through the first part of it. I curl up in bed with the electric blanket on. I get so cold when this happens.

Now I'm looking at my schedule, trying to figure out what we can reschedule. It'll take me at least 2 days if not more to feel like myself again. I'm good at hiding... a little extra blush will hide how pale I become. I'll nibble on higher sugar foods to try to keep myself moving. I'll take mega doses of B12 and a few other vitamins to try to quickly repair what was just removed from my system.

I read some where that a blogger was calling this, "gluten poisoning" and it really fits. The closest thing I've even been able to relate it too is food poisoning.

So please understand. Yes there are those fad dieters who have decided to cut gluten (but eat lots of gluten free products which are SKY HIGH in sugar and cost) to try to lose weight but then there are those who have an illness. Who will read the backs of everything, or kindly refuse food at your house just because no food is worth feeling so terrible.

It isn't you. It's me.

1 comment:

Cheri said...

First of all, I am so sorry you deal with this. Several people I love do.

Thank you for being open and honest. And for not posting pictures. Hope you are feeling better soon!