Tuesday, July 14, 2009

#27 way to change the world

After taking a week off for the holiday, I had this all set and ready to go...and then I forgot to post it. oops!

I've been dealing with something relatively big lately and I'm ready to talk about it a little bit now.

Those of you who pay attention to my blogroll may have noticed I have added a bunch of "gluten free blogs." It's a not-too-interesting story how it all came about, but the gist is, I am now eating a gluten free diet because I think I may suffer from Celiac disease.

See...I've watched my mother struggle with "weird" symptoms all my life. It seems as though she's had one diagnosis after another, without any of them really "fitting."

And then things started to get weird for me. I started having strange symptoms just before I became pregnant with Myles that have continued to really bother me. My hair falls out by the handful...I can't concentrate on anything...I feel sick whenever I eat...I have pain in my joints...I am so anemic I couldn't give blood...I have repeatedly tested high white blood cell counts for no reason...I have this weird, non-spreading ITCHY rash on my right hand and inside my elbow on my left arm.

One day, I happened upon this post and I was compelled to read every word Shauna has written. She is an amazing writer and I <3 her blog. But more importantly as it relates to this story, her blog raised my curiosity about Celiac disease...gluten intolerance...heck...GLUTEN. I had some vague recollection of these words, but never really paid them any attention.

And then I read the list of symptoms. Pretty generalized list...could be just about any other illness. In fact, Celiac is often misdiagnosed as a host of other illnesses with similar symptoms. Something clicked into place when I read the symptom of "Skin disorders (dermatitis herpetiformis)." I Googled and...well...found myself staring back at me.

Yep...I initially thought it was poison ivy (I'm highly allergic and have pets that do go outdoors). Then when it didn't go away, I thought I was allergic to my crochet hooks and changed to "natural" hooks. But that still didn't seem to fix the problem. And the itch...I can not describe to you what this is like. I have never experienced an itch like this. Oh wait...yes, I have...and I have the blog entries to prove it (I won't bore you with the links). After reading through my archives, I noted that I've been getting the SAME rash in the SAME spot for the last THREE YEARS now...and I chalked it up to poison ivy each and every time. Three years running...SAME SPOT. I mean, really...do I need someone to club me upside the head with an obvious stick?

So now that I've self-diagnosed...maybe I should see a doctor, right? Well...not necessarily...

The current prevailing theory is that if you have DH, you have Celiac. Of course, the only way to definitively diagnose is with intestinal biopsy. You may be able to diagnose with skin biopsy near your rash area, but still...BIOPSY...a word I'm not such a big fan of in the theoretical sense (and I'm sure I would be even less of a fan of in actual practice). AND...the only way to treat Celiac is to eat gluten free. That's it. Something I could do on my own without having to be poked and prodded.

So...I tried it. And guess what? Yep. No more itchy. And I FEEL AMAZING!

I've now been mostly gluten free for about a month. The few times I've slipped (pizza is a big weakness for me), I have paid for it with an intensely itchy outbreak three days later. I've only recently sworn off even the occasional pizza after an encounter with Pizza Hut. Seriously thought I might have to cut my hand off in order to get some relief.

Here's the thing...it's not just that the itch is gone. My brain is clear and I can function again. Focus. Accomplish things I really want to accomplish. My whole life I have never had a good memory. People talk about memories they have from years back (at which I was reportedly present) and it was like I wasn't even there. There was a big blank. Heck, a lot of time, I couldn't even remember yesterday. Lately, I've blamed grief and/or possibly depression, but when I really think about it I have to admit that I've always been this way. Finding it could be due to something as simple as what I was eating...it was a relief and a serious blow all at the same time. You see...I love food. I love all types of food. How in the world was I going to do this forever if this was, in fact, my problem?

Thank goodness for the internet and a heightened awareness in our society of food induced reactions (autoimmune and allergic). It's actually been wonderful. Yes, it's somewhat difficult because I can't just absentmindedly grab something to eat anymore. But the results have been SOOOO worth it. And, like most things in life these days, there are blogs...and webpages...and people to talk to for support. This past weekend I found a support group for Erie, PA, and they told me that Boston's has a new gluten free pizza. So we took a little trip and it was pizza...REAL pizza...and it was good! And there is gluten free beer...and it's GOOD TOO!

I'm sure there will be commenters who question and/or criticize. Maybe it IS all in my head. But honestly, I don't care if it's all in my head because my itch is gone and I am so incredibly happy about it that I don't care that common sense seems to have left the building. Whatever. I'll take it.

So...my good cause for this week is The Celiac Disease Foundation. Why? Because their website has been an amazing source of information for me and I respect their work in raising awareness.

That's it. My current life "issue." Not the first...not the last (with any luck)...and not very exciting. My next entries will be crafty, I think...just for counterbalance on the 'interesting' meter.

8 comments:

Shinny said...

I was wondering about those links for Gluten free stuff. Glad that you are feeling better. My neighbor recently found out she had Celiac and I was talking to her yesterday and she said that she is amazed that she lived with such intense stomach pains for the past 30 years.
It is amazing what changing your diet can do for your body. Good luck finding gluten free foods, that is a challenge around these parts. ;)

jeannine said...

Hmmm, I was told by a gastroenterologist that there was a very simple blood test to test for Celiac, and they almost never do the intestinal biopsy...might want to check in with a gastro just in case! Some of them are very nice and not in a hurry to subject you to unpleasant tests.

Catherine said...

Thanks jeannine. I was told that you can do the blood test, but that will only show antibodies. If the ceratin levels of certain antibodies are present, they do the biopsy. Since the diet seems to be working, I think I'll pass on both.

Rosepetal said...

I am glad that you are feeling so much better.

What did we do before the internet? I honestly can't remember.

Hennifer said...

Interesting about the blood test, I was going to ask as well because my doctor just ran a blood test on me as well.

Regarding pizza, I don't know that their business is like but there is a place out west called Garlic Jim's that also has gluten free pizza that I hear is really good.

I'm glad you are feeling better.

Aurelia said...

Hey you, yes I have had strange intestinal symptoms as well in the past, and while I'm glad the diet is working, the blood test is no big whoop, I've had it. Mine was clear.

As for the biopsy, it's done during a colonscopy, and eventually you will have to have one of those done simply because we all do at some point for colon cancer screening.

Something to think about, but there are a lot of intestinal issues that happen that look like celiac and really are things like parasites that can be cured with a round of antibiotics. And yes, it may not matter, if it's just celiac, but parasites can be brought home by kids and given to parents and vice versa, so if your kids show any symptoms, go see a specialist. a quick stool sample or blood test and a round of drugs for all of you is a heck of a lot easier than a special diet for life, especially for a kid.

Just a thought, I'll support whatever you do.

Catherine said...

For a kid?

Aurelia said...

I referenced kids because if it's celiac it will only be you with symptoms, and perhaps no big deal to eat a special diet. Thing is you self-diagnosed, so you can't be sure.

But if it's a parasite, or another infection or virus, or whatever the kids could get it, and get sick. So down the road, if they get gastros, or something odd they can't shake, maybe you should not just leave it to special diets and self-diagnosis.

I've just heard of many many women who are misdiagnosed with IBS or celiac, and it turns out that they have a bug. One that the kids have as well, but they have very different symptoms, that come and go and look like a stomach virus. And it's curable.

Make any sense?