Monday, December 5, 2011

Gluten Interlude

This is a warm loaf of poison to me.
This isn’t a gluten-free or celiac-focused blog, but occasionally the disease inserts itself into my life, so I guess it’s only fair it sometimes finds its way onto my blog, too. For a week now I’ve been dealing with symptoms, having accidentally glutened myself somehow last weekend. The best we can figure is that a product we’ve used safely in the past, that has no gluten-containing ingredients and is listed as gluten free on the brand website, was cross-contaminated in this batch enough to make me sick. The increase in people who are giving up wheat or gluten because they feel better off it—and my homeopath reckons just about everybody would feel better eating less wheat—helps in that there is a corresponding increase in the number of “gluten-free” products available, but not all of these are tested or certified or safe for someone with celiac, not just a dietary preference. (Really, I can’t wait for the FDA to get its act together and define “gluten free” in a meaningful way.)

So anyway, the week began with some stomach upset—not a usual symptom for me, actually, so I assumed I had a little bug or something had just disagreed with me. Then the mouth sores appeared—quite painful, as they are with a bad glutening, and they’ll stick around for a couple of weeks. Then the exhaustion, the kind of fatigue that sent me to bed two afternoons, trying to keep an ear on my three-year-old because I had no other choice but to lie down. It was like early pregnancy exhaustion; I couldn’t fight it in the least. Then the depression and irritability. I can’t explain how an invisible protein can affect my mood and stability and brain like it does, but I know I’m not the only one.

Even as one part of my brain was saying, You know this is just the gluten, it wasn’t making much headway against the part that felt—well, depressed. No need to go into details there. And although I can apologize to my kids for my Friday afternoon meltdown and tell them it was the gluten talking, that’s no excuse, no excuse at all. “Irritability” doesn’t even cover it. It makes me feel like a cross between a porcupine and a pit viper; it’s like there is no connection between my head and my tongue, for starters. I knew the best thing to do was hole up by myself until I felt better, but there’s no way to do that in my life, and my kids got the brunt of my gluten-altered mood.

The worst of it—besides the guilt for being a terrible mother for an afternoon—is worrying about what unknown damage this latest gluten poisoning has wrought. Celiac is an auto-immune disease; that means that my body attacks itself in response to gluten. The initial bloodwork tested my body’s antibody response to gluten and its antibody response to itself. All three numbers were sky high—double to triple the normal level. When the tests were run 15 months after I stopped eating gluten, the anti-self antibodies were still very high—heading downwards, but still high. I have three kids. The idea that my body is attacking itself scares me more than I can say, and every time I accidentally poison myself, I’m making it worse.

This happens periodically, no matter how careful I am. It all makes me a bit crazy. Invisible stuff that transfers easily and makes me sick, eating food that ought to be fine and getting sick anyway—of course it makes me crazy. I have (more or less) cheerfully altered my diet to keep myself healthy and whole, and it’s so frustrating to stumble this way.

I debated about posting this here. I've set the parameters--this is a craft-focused blog, a happy and (hopefully) fun place--and this topic doesn't fit. But I decided to go ahead and do it anyway because it sounds so crazy, that eating the wrong thing could not only affect me physically but mentally and emotionally too. It's hard to maintain happy and fun when my brain starts misfiring, and I don't think there's much (any?) awareness in general of how this disease can affect mood and stability, nor of how wide-ranging the symptoms can be. So here's my little interlude; happy, fun, crafty posting as usual will return with the next post.


Carolyn said...

I'm sorry you've been hit with the gluten reaction. Ellen had one too, which she traced to Peppermint Hershey Kisses. Although they have no gluten in them, apparently there's a huge cross contamination problem with all Hershey products. I hope you heal quickly and are back to your cheerful, happy self!

Michelle said...

So sorry. It throws everything out of whack. It's hard to explain to other people the fogginess and depression gluten reaction. I can tell people really don't believe it sometimes. And it's hard for me, because I don't usually get any other physical symptoms, so it's easy to mistakenly attribute those symptoms to something else (particularly, for me, hormones). It's real, and I know lots of people who have the same reaction. It's not just a "stomach thing."

Hope you're feeling better!

Jill said...

I think it's healthy to post this. She who follows all the rules misses all the fun. (Katharine Hepburn) And, it's a public service announcement. What if you have a regular or even occasional reader who recognizes symptoms and is provoked to ask health questions? I hope you improve quickly. Hey, good news! Almond macaroons are GF by nature. Woot. (almonds don't bother you, do they?)

MadMad said...

I second what Jill said, and hope you're feeling better soon!

Rose Red said...

Everyone has bad days. And not happy shiny crafting experiences (that was me yesterday when I realised I had to rip back a sock heel flap for a second time, because I am an idiot and apparently can't centre a cable pattern!). At least you have an excuse for your bad ones (even if you don't want to use it). I think it's valuable to share. I certainly had no idea that gluten could have such an emotional impact as well as a physical one.

Jennifer J said...

I've had mental health problems since I was 13yo; years of meds and counseling, but the damage was done long ago. There are things I react to (being called a liar, being told I don't know what I am talking about) that set me off - and I act, to quote my 2 youngest girls "like I am crazy". And they have learned to walk away. And I have learned to go back later and explain and apologize.
It is totally unfair, when you are trying so hard to be careful, that there are people out there who don't care what their carelessness might cost you.
Your children are not going to hold this against you. They know you love them, and you are teaching them that everyone has hard days, everyone says things they regret. So you apologize, you give hugs and kisses, you let them know you need extra to help you feel better. Then you lay down and rest when you have to, and you pray and ask God to protect them when you cannot.
I hope you get better faster than usual. I hope you drink lots of water or juice, to help flush the poisons out of your system.

Donna Lee said...

I didn't know about the emotional aspects. It explains some of the symptoms one of my clients was having. I wouldn't worry too much about the kids. You are a great mom and that's what they know and will remember. I hope you're feeling better by now. It's scary to think of your body attacking itself.

amy said...

Thanks, everyone, for your comments. I am finally feeling close to normal. Looking back on the last week-plus, though, I wonder how I ever managed to function when feeling like that *was* my "normal."

And thank you, Jennifer J, for sharing your experiences. The kids are very forgiving (which actually kind of makes me feel worse). I tell them, too, how wonderful it is now that I'm feeling more like myself. They're all three good kids. The oldest even eats gluten free at home without complaint, even though he can tolerate whatever he wants!

Donna Lee, I'm glad you got some insight into one of your clients here! Worth posting, just for that. :)

Victoria said...

Glad you're feeling better. You are a human and this is your blog, and I think you should post whatever you like. :-)

Bells said...

just feeling unwell in itself (as I have all week) can take its toll on your emotional state. Add in immunity issues and the kind of complications you have and it's a nasty thing.

I suspect I have some gluten issues too but with no real diagnosis yet it's hard to pin point. Even just the slight issues I have make me a nasty grump - so I sympathise.