Tuesday, November 07, 2006

Look, I'm a lead balloon!

As some of you know, I have three blogs: a work blog, a food blog, and a cello lesson blog.  I usually keep these three separate, because foodies don't usually care so much about the problems of academia, academics tend to eat what they want, and my three-year-old's music has little to do with what I am baking or working on at school.  This post is going on both my work blog and my food blog because it deals with both, plus some of my academic friends might have this problem.  What the heck, I guess I'll put it on the cello blog too, just for kicks.
I feel like crap.
I don't have celiac disease.  I don't have celiac disease, officially.  I don't have celiac disease the way so many of you have it.  I thought.  Perhaps I am wrong.
My son, the Maestro, has sensory-integration disfunction, sensory-processing disorder, or a bunch of other names for something that means he is really touchy about a number of things.  Sound is an easy example to explain.  He can't handle noise, but he loves music.  He would be the kid upstairs drumming and singing into the karaoke machine.  Anyone else's noise drives him up the wall, or at least makes him want to slam himself against the wall.  I think music is an ordered form of controlled noise like auditory methadone.  He doesn't like dissonance, perhaps because it feels disordered to him, and "hurts his feelings".
Earlier this year, we found some literature on the link between autism and certain proteins, including gluten.  Sensory Integration Disfunction is present it a lot of autism cases, so after consultation with SciFinder, we decided to give it a try.  We took the Maestro off gluten and casein, and it has made a huge difference in his ability to control his reactions to sensory input.
I live pretty far from the rest of my family, and have missed most of them going off wheat.  My Mom doesn't eat wheat, and all of my siblings either don't eat it, or have kids who don't or shouldn't.  My Mom had told me several times that I should give it a try, but how do you "try" going off wheat?  It is everywhere, in everything.
So, suddenly I have a kid who needs to eat something else.  Sorghum, or Jowar, flour is a good substitute, if you can learn how to handle it, hence the Gluten-free blog.  So I gave it a try myself, and felt a lot better.  I hadn't really felt sick, but I was tired a lot.  I fell asleep in a lot of group meetings and seminars.  I went off wheat, and I stopped being tired all the time.  That was good enough for me, I was going wheat-free for good.
We're pretty strict with the Maestro's diet.  We watch out for modified food starch and barley malt and dextrose for him.  I have always had a problem with oats, and now wheat.  I haven't been concerned about traces of gluten in what I ate, however.  The rest of my family claims that they feel OK eating spelt, oats and rye, so it must just be a wheat issue with us.
I have always had an iron stomach.  I throw up every 10 years or so.  If Riley or the kids get the stomach flu and are turning themselves inside out all over the house, I tend to feel a little queasy, but no more than that.  I can't be a celiac.  The Maestro and my little sister Rai both had the blood tests, which came out negative.  It's not celiac disease in my family.
Yesterday, I didn't bring enough lunch to work, and got hungry in the afternoon.  So I went to the store on the corner and bought a snack.  Hmmm.  Nestle's Crunch (with Caramel).  Tasty.
About ten minutes later, I was sitting at my computer when my brain did a little flip-flop in my skull.  My head hurts.  My back hurts.  I feel weak and trembly.  My head, where it doesn't hurt, feels kind of like a lead balloon --heavy and hollow at the same time.
Crunch contains crisped rice (rice flour, sugar, barley malt, traces of wheat gluten).  All the celiac bloggers are saying "Why did you eat that?!!  That's so stupid!  Of course you are going to feel like crap!"  Um, I don't have celiac disease, I am just wheat sensitive?  Um, I guess not.  If I don't have celiac disease, officially, I guess I need to eat like I do.  And no, I am not about to start eating in order to do the gluten challenge sufficient for an endoscopy, so don't even suggest it.  The blood test would come out negative, just like for the rest of my family, so that isn't likely to be any more helpful.
I had hoped I would feel better when I woke up this morning, but I don't.  Oh, and my iron stomach feels a little queasy this morning.
Did you know that one in between 100 and 133 people have celiac disease, depending on where you get your statistics.  This ranks it up with hyper-tension with numbers.  That is the statistic for people who don't know they have it.   You may be that one person who has celiac disease and doesn't know it.  Head-aches?  Tired or sick a lot?  Digestive problems that no one can explain?  Weird persistent rashes?  Joint problems?  Some subset of those?  It's worth looking into.  A whole generation of doctors didn't study anything about it in medical school, so you basically have to tell them about it.  If you think you have it, you should get tested for it before going off gluten, if you care about an official diagnosis.  Gee, this would have been a good post for celiac awareness month, wouldn't it?
It may be you.  Because it sure isn't me.  I don't have celiac disease.  I'm just wheat sensitive, right?
Oh, I feel like crap.

1 comment:

  1. Lots of people are gluten intolerant and don't have CD - Or aren't willing to hurt themselves with massive gluten ingestion in order to get the biopsy. I don't think this is so unusual - For instance, the forums on www.glutenfreeforum.com are full of people who haven't been tested or had inconclusive tests or tested negative... or who only tested using the Enterolab test which is less medically accepted but believed by many to be a legitimate way to diagnose gluten intolerance.

    I think it's a blessing to be gluten intolerant but not have celiac disease, because it means it's less likely you're being permanently damaged by accidental ingestion of it. But it certainly doesn't mean you should start eating gluten again, if it is in fact gluten that's making you sick (which it may or may not be - It's worth doing an elimination diet to see).

    Gluten avoidance is recommended by some people for a lot of conditions, such as IBS or fibromyalgia or autism. It's not like only people with CD are allowed or have an excuse to be GF.

    I personally tested positive for gluten intolerance and for celiac genes by Enterolab, but that's not enough for me to say conclusively I have CD. So I got the blood test, but I'd already been GF for months so of course it was negative. I tried to go on a gluten challenge and became extremely ill - Thus, it's unlikely I'll be able to get an endoscopy. So it's still possible I have CD, but I have not tested positive so I can't say conflusively. All I DO know is I have to eat a celiac diet, which means strictly gluten-free with no cross-contamination, in order to be healthy. And right now, that is enough for me.