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Scheherazade in Blue Jeans
freelance alchemist
Oh, hey, that's not awesome. 
6th-Nov-2009 10:40 am
Boondock/can't believe
So my rheumatologist called with my test results... at 10pm last night. o.O Which was weird. And anyway, I was not home, and he didn't tell Adam anything, so I was going to call this morning.

I walk in the door with Mark at right about 9am o the dot, and the phone rings, and it's the doctor.

So it's Not Lupus - ANA, anti-Smith, anti-DSDNA all negative. Sjogren's negative.

Gliadin positive.

You may ask "What does that mean?" Which is a valid question, because I sure didn't know. This is what that means. Celiac is what that means.

On the one hand... yay that this is not a thing what kills people?

On the other hand. YOU GUYS. I live on pasta, on peanut butter sandwiches; so many of my favorite foods have gluten that this means a complete overhaul of my diet, and it means a huge pain in the ass at restaurants, et cetera. It is big sweeping lifestyle changes. I am not a fan of this.

On the gripping hand, if cutting out gluten takes away the joint pain, fatigue, and skin issues...

*sigh*

Reasons this actually makes sense:

* There's apparently a link to epilepsy.
* It would explain my rapid weight loss whenever I'm not on a medication that causes weight gain.
* Woke up last night with intense abdominal pain. Had pasta for dinner.

Anyway.

I was going to drop gluten starting today, but apparently the biopsy doesn't do any good if you're already off gluten, so I'll keep my diet normal for now. Calling my primary care doc right after I make this post to arrange for said biopsy/referral to gastroenterologist.

I mentioned this on Facebook first, so I've been getting lots of Gchat/AIMs; I feel that I must tell you that I'll be away from the computer most of today, so e-mail is better than chat.

And... yeah. That is that for now.
Comments 
6th-Nov-2009 04:00 pm (UTC)
What are you hoping to get out of the biopsy? I didn't get one, because I was debilitated and couldn't take another day of being sick.

Anyway, when you need the "OMG what products don't suck thing" let me know.
6th-Nov-2009 04:11 pm (UTC)
Oh, I do. You were on my list of people to contact!

Just hoping for confirmation; I'm hearing that the blood test can have false positives...
6th-Nov-2009 04:03 pm (UTC)
/comfort

It's a tough row to hoe, but it can be done.
6th-Nov-2009 04:03 pm (UTC)
There are a LOT of options out there now for gluten-free breads, pastas, etc. So you may not have to change your diet as much as you think - it's merely a matter of switching to the non-gluten ingredients!

Here's a great starting point for eliminating gluten:

http://www.livingwithout.com/

My sister just got diagnosed with Celiac's disease (and apparently, it's genetic so any of your relatives have something like a 15-20% chance of also having it - I'll probably get tested myself here at some point)

Edited at 2009-11-06 04:04 pm (UTC)
6th-Nov-2009 04:04 pm (UTC)
My mother in law has celiac disease. My sister in law does too. She gets ugly welts if some gluten gets in...

My wife tested positive for a gluten sensitivity gene from her dad and for the celiac gene from her mom, so we're TRYING to move away from gluten where possible.

I tested positive for the gluten sensitivity from both parents, but no celiac.

If you're like my sister-in-law, you'll find that many many symptoms disappear when you eliminate the gluten.

Good luck! Keep us posted (because we can use the info too!)
6th-Nov-2009 04:12 pm (UTC)
Wait what welts? Because I get hives.
6th-Nov-2009 04:08 pm (UTC)
There are so many gluten-free options nowadays that you can eat a pretty normal diet. I've even found conversion recipes for changing your favorite recipes into gluten-free recipes (like your famous cookies). I bet it feels nice having an answer to all those seemingly unrelated problems, though. Now you know what YOU can do and will be able to drop the extra drugs in time. I know I'd be all "Yay" over that.
6th-Nov-2009 04:17 pm (UTC)
There's even gluten-free beer now.

It's not bad.
6th-Nov-2009 04:08 pm (UTC)
Good luck! It's a nuisance to deal with, but the difference can be huge! (I don't have it myself but someone close to me has something similar. All we've figured out so far is that he doesn't actually have celiac disease--ruled out by multiple tests--but gluten causes enormous pain anyway.)
8th-Nov-2009 03:25 pm (UTC)
it could be a normal wheat allergy in that case (which is actually a different beastie)..though I'm sure you thought of that already.
6th-Nov-2009 04:10 pm (UTC)
I know gluten-free stuff has improved a LOT in the past few years, and I have several friends who've gone off gluten and seen a big improvement in their health.

If you decide you want to go off this weekend, or start reducing it, I've spent years learning to cook around allergies and restrictions. Never this particular one, but I'm inventive and we have the internets. I can keep you fed. :)
6th-Nov-2009 04:13 pm (UTC)
Yeesss...there is a link to epilepsy, but not technically the epilepsy you have. If I remember correctly, you have an epilepsy that stems from the hippocampal region. The epilepsy linked to celiac stems from malabsorption and vitamin B deficiency which leaves (ungh - going from memory here...) plaques if I remember correctly in the occipital region? There were a number of articles I read a few years ago when I saw the link between celiac and epilepsy.

My primary doctor at the time was less inclined to pay attention to specific regions of the brain, but there may be some validity to region specificity.

The more important thing right now is to relax, not worry so much about specific symptoms and blood test results and what they may or may not mean until you find out about the biopsy, then you'll have more data to work with.
6th-Nov-2009 04:33 pm (UTC)
I'm kind of with this.

Although, as mentioned above, you might see results quickly with gluten elimination. Find out when your biopsy is and how long you have to have been eating a normal diet for the results to matter. If the biopsy is in 4 weeks and you need a week of normal diet, trying gluten-free for a week or so and seeing if it helps might at least feel like getting some handle on the situation.
6th-Nov-2009 04:26 pm (UTC)
Oh, damn. I'm so sorry.
(Deleted comment)
6th-Nov-2009 04:33 pm (UTC) - It could be worse...
There are a lot of options out there now and I find that I notice stores selling gluten-free products more and more lately.

I went gluten-free for a while as a test against whether it was causing my joint pain but no such luck (final diagnosis for me was early-onset arthritis). But I find myself more aware of it now. A few of my friends have Celiac so I am much more aware of things now.
6th-Nov-2009 04:33 pm (UTC) - <b>hugs</b> all around
First, a ray of light for you: pizza is not off the menu. I've had the GF pizza at Stone Hearth and it's truly tasty and tastes *right.*

Secondly, I strongly recommend chatting with doeeyedbunny when you're ready. She's a po' grad student who's been living with a Celiac diagnosis for more than five years now and she can give you all the good local tips for restaurants, shopping and general cope.

Third, know that whenever you come to our house, you will be fed. nods
6th-Nov-2009 11:33 pm (UTC) - Re: <b>hugs</b> all around
1. Oooh, and they have a location in Belmont!

2. She's definitely on my list. :)

3. *hugs* Thank you.
6th-Nov-2009 04:38 pm (UTC)
*sigh* If it's not one thing....

cissa can hook you up with gluten-free recipes, I believe.
6th-Nov-2009 04:38 pm (UTC) - alternative but awesome groceries source
Can you get to here: HMart, MA?

I finally made it up to the H-Mart (Chain of Korean Grocery Stores) in Duluth this past w/e (on way home from CamCon ICC in Atlanta) Lots of yummies w/o wheat. I am not guaranteeing your local will have the fresh ricepuff maker, also noodles made from rice, potato, so you would not have to give up pasta just change the kind of pasta.

Just the produce department and fresh fish departments alone (both of which were HUGE at the location we went to) are worth going in the door, not to mention the full side that is all little cafes with traditional and streetvendor Korean foods. I now want to move to GA or anywhere there is one of these stores. I can't wait until we show Oma the gem we found.
edited typo

Edited at 2009-11-06 04:44 pm (UTC)
(Deleted comment)
6th-Nov-2009 04:41 pm (UTC)
I'm sorry to hear you have "something" but in a way it is a LOT better than no diagnosis, so I do hope this turns out to be something that, while requiring a significant adjustment, can improve your quality of life quite a bit. Love you bunches sweetie!

OH! YOU HAVE TO TRY CHESTNUT FLOUR AND MAKE BREAD TYPE PRODUCTS WITH IT!!!!! *dies of yum*
6th-Nov-2009 11:36 pm (UTC)
So noted! :)
6th-Nov-2009 04:54 pm (UTC)
My friend dodging_fate was nearly killed by her un-diagnosed celiac before she managed to do enough research to figure it out herself. Both her daughters are celiac as well, and she's made a pretty amazing job of recovery. You might want to friend her, because she's an amazing source of information, experience, and support regarding how to actually, and practically LIVE with that condition.

Also? She's awesome.
8th-Nov-2009 03:28 pm (UTC)
i will second that dodging_fate is awesome. And her posts about medical types stuff have been truly helpful.
6th-Nov-2009 05:06 pm (UTC) - You get to live!!!!!!
cutting out gluten out ofones diet is getting to be a common thing. Yeah it's a pain and I'm sorry you have to go through it, but you get to live.

We get to enjoy for that much longer. ou have to take your win when you get them.
6th-Nov-2009 05:11 pm (UTC)
this sucks, but there are pastas that are gluten free. and bread as well but it does suck my hubby has sensitivity(not celiac thank gods) to wheat so wh try and do gluten free as much as possible
6th-Nov-2009 05:18 pm (UTC)
WELCOME TO THE FABULOUS WORLD OF NOT BEING ABLE TO EAT ANYTHING ANYWHERE!

Srsly, though, I some of the gluten stuff crosses over to corn allergy, so I see a lot of celiacs on the 'net. It is manageable, after an adjustment period.
But it is an adjustment; you have my sympathy. And empathy.
6th-Nov-2009 11:37 pm (UTC)
Dude, with the soy allergy, I was already there!
6th-Nov-2009 05:18 pm (UTC)
Urk. Don't have any advice to offer that other people haven't already gotten to. All I can say is, as someone else with chronic stomach-related health issues, you have my sympathies.

Adjusting to this sort of thing is hard, no doubt about it, but it can be done.
6th-Nov-2009 05:23 pm (UTC)
sounds like you're already surrounded with folks who have the info hookup, love. So here are some hugs and some cuddles and some virtual tea. Love you so much.
6th-Nov-2009 05:32 pm (UTC)
Hubby has celiac and there are sooooo many great options out there now. It is truly not as bad as it used to be. If you want some links to websites with recipes, etc, I'll happily oblige, and also links to food products that we buy in our household. Just let me know!!! (Yes, it is a pain in the ass, and I feel your pain about it. I haven't given up gluten myself, but I really should. I think it would help me a lot, actually, to do so.) Anyway, just let know if you'd like my input. :)
6th-Nov-2009 05:37 pm (UTC)
I highly recommend Gluten-Free Girl -- I find her blog very inspiring even though I'm not gluten-free myself, and she has a book about living happily with celiac, though I haven't gotten a chance to read that myself just yet.
6th-Nov-2009 05:39 pm (UTC)
Condolences. I've got friends with it - it makes life more interesting, but certainly not impossible.

Some of them can take small amounts of wheat occasionally - this can make conventions and other special events more bearable.

I just did a quick search - there are several LJ communities you could check out. Here are the ones that look active:

  • celiac - Celiac Related Information (Updated 21 hours ago)

  • glutenfreevegan - Gluten free, vegan cooking (Updated 1 day ago)

  • food_allergies - Against the grain (Updated 1 day ago)
    Support and information about food allergies.

  • allergy_recipes - We like to eat, too! (Updated 2 days ago)
    Recipes and info for those with food allergies and sensitivities

  • veryglutenfree - Yet another Gluten-Free community (Updated 1 week ago)
    Yet Another Gluten-Free Community
6th-Nov-2009 06:13 pm (UTC)
It's something. Yuck.
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