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Scheherazade in Blue Jeans
freelance alchemist
State of the gut 
2nd-Dec-2009 04:06 pm
Everything hurts/Doesn't work
Biopsy December 29.

Which means going back on gluten from now til then, for maximum gut damage.

No, really, this is what they want. Because if I'm gluten-free, my gut is healing, and the biopsy will show healthy or less-damaged tissue, which doesn't prove a thing.

I have mixed feelings about this. I feel better sans gluten. On the other hand, I want to know for certain - because if this is just a gluten insensitivity and not celiac, I may not always have to be so rigidly non-glutened, plus yay less risk of cancer. On the gripping hand, tortellini.

...I miss tortellini.

But yeah. Yay bread! but boo making myself sick.


Related: will need a ride home from the hospital that morning, as I will be loopy from twilight sedation.

EDIT: The timing is pretty perfect, as it means I won't have to starve myself over the holidays - Christmas gets spent in a tiny town in North Florida, and the nearest GF resources I can find are about an hour away.
2nd-Dec-2009 09:08 pm (UTC)
I've had excellent gluten-free tortellini, ravioli and gnocchi. All is not lost.
2nd-Dec-2009 09:10 pm (UTC)
I will look forward to that in the new year. :)

I'm a bit resentful about the biopsy; I feel better, and don't want to go back to low energy and Teh Itchening! But knowing exactly what's wrong is also important.
2nd-Dec-2009 09:55 pm (UTC)
ooooh...May I ask where you have found gf tortellini?
2nd-Dec-2009 09:56 pm (UTC)
Whole Foods freezer case from a local company. I find the ravioli and gnocchi way more regularly though.
2nd-Dec-2009 10:00 pm (UTC)
Thank you!
2nd-Dec-2009 09:11 pm (UTC)
I'm so glad my dr didn't make me go through that. But with your health I gues it makes sense to have that "Gold Standard." I'm glad they're not making you be on it for longer!!
2nd-Dec-2009 09:11 pm (UTC)
Here's hoping it's a gluten intolerance (that is what I have) and not Celiac! Good luck miss. :)
2nd-Dec-2009 09:23 pm (UTC)
I'm confused re this comment: celiac and gluten intolerance are the same thing. One is the name of the disease, the other is the explanation of it.

2nd-Dec-2009 09:53 pm (UTC)
Not so. If you have Celiac Disease, you are certainly gluten intolerant, but the opposite is not true. You can be gluten intolerant, but not have the gut damage that is the hallmark of Celiac Disease. Ie., Celiac Disease is one specific form of gluten intolerance.
2nd-Dec-2009 10:11 pm (UTC)
But not all people have the gut reaction. I didn't for at least a decade.

I wonder if this is a US/UK difference in understanding of the disease? I've been gf for 11 years and I've never come across this distinction.

Must go talk to doctor.... Always something new to learn :-)
2nd-Dec-2009 11:11 pm (UTC)
Exactly. I have some other autoimmune issues (Hashimoto's thyroiditis & endometriosis) and my doc wanted to do allergy testing and such on me to see what we could eliminate from my diet that was dragging my immune system down. I tested negative for Celiac disease, but wheat/rye/barley all came up on my food allergy testing as big red positives. I don't have the villi tummy issue like a Celiac would - I get itchy and hivey and my rosacea freaks out and I feel crummier than the normal level of crummy with the thyroid woes. When I eat clean I feel tons better...so I do my best to do so.

Interesting that the UK and the US have different definitions on gluten intolerance.
2nd-Dec-2009 09:18 pm (UTC)
I think it's important that you know for sure. You may just be feeling better because you think you should be, you know?
2nd-Dec-2009 09:28 pm (UTC)
The skin that's been inflamed for over a year cleared up!
3rd-Dec-2009 10:20 pm (UTC)
You're probably right. The anecdotal evidence is difficult to argue with. But it is all anecdotal for now, and I want you to be sure. Cause I want it to be something you can manage, not an ongoing mystery. I want you to get better, and Science! will help.
2nd-Dec-2009 09:21 pm (UTC)
Because we *knew* the biopsy would be positive, I made a list of everything I would never get to taste again, stocked up on Tagamet to kill the pain, and went on a pizza, cream cake and digestive biscuit binge.
2nd-Dec-2009 09:28 pm (UTC)
Yep. That's my plan. :)
2nd-Dec-2009 10:49 pm (UTC)
If it's gonna hurt no matter what, may as well have as much fun with it as humanly possible! :)
2nd-Dec-2009 09:21 pm (UTC)
I wish you the best of luck, for however far that will take you.
2nd-Dec-2009 09:33 pm (UTC)
There's a wonderful selection of gluten-free foods in my local health store, Harvest House. It's the best I've ever seen anywhere (although I'm not usually looking for such things). I think you can order from them online.

You can see what gluten-free products they have here.

Sounds like you have great local resources. I was going to suggest shipping to FL, but then I re-read and realized you'll be having gluten in that timeframe. Good luck!
6th-Dec-2009 01:00 am (UTC)
2nd-Dec-2009 09:51 pm (UTC)
You know, as I've watched you go through this, and I've been thinking, and you know my thoughts via email.

So here are more thoughts.

Every time they test me for anti-gliadin it comes back *very* positive. anti-transglutaminase and the other one have always come back negative. The biopsy I had done was negative. I only recently learned that once negative does not always mean negative...that was a surprise because my gastroenterologist at the time indicated to me that once negative would always mean negative even with the positive titer.

Anyway - with all of my other symptoms and diagnoses I have learned over the past while that wow...yeah..squarely in the gluten sensitive, so in a couple of months I'll be going back to a very gluten free life. Do I eat gluten now? Yes. Am I feeling better now with all of my other disease management techniques? Hell yes! Could I stand to feel even better? Yes! And I'm looking forward to seeing what gluten-free can do *now* that it couldn't do the last time I did this.

Am I celiac? No - at least not when I had the biopsy done. I was eating gluten and didn't have damage. Do I even want to consider having the biopsy done again? Not a chance. If GF works this next time around? I don't care if there's damage with gluten or not and which specific type of gluten sensitivity it is. Doesn't matter to me :)

Either way, good luck!!!! :D
2nd-Dec-2009 11:22 pm (UTC)
"But I must have another holiday cookie. Really. The Doctors want my tummy as damaged as possible. THIS IS FOR SCIENCE!!!"

Maybe if you eat enough tortellini this month, you'll get sick of it. You know those are also called "Venus's navels," right?
3rd-Dec-2009 01:01 am (UTC)
Oh! At least the timing is perfect?

-hugs lots-
3rd-Dec-2009 02:58 am (UTC)
I can tentatively offer you a ride for post-biopsy. There is a chance I will still be under more-or-less house arrest then, though. So.. keep me in mind as a backup?

6th-Dec-2009 01:00 am (UTC)
Thank you!
12th-Dec-2009 07:57 am (UTC)
I need to retract this offer. :( I will be on my way back to MA from NC on the 29th. Sorry!
12th-Dec-2009 11:31 am (UTC)
No problem. Enjoy NC!
3rd-Dec-2009 05:35 am (UTC)
That's so odd. I mean, okay, it makes sense. But it's still odd.

I'm glad there's an up-side to it, and really hope they can finally tell you what's going *on*.
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