savemylife

6 ms·

1.
by savemylife 10y ago
I hope it brings with it some advances in diagnostics. I have some kind of autoimmune condition (I think) that has resisted a proper diagnosis for over 2 decades. Whatever it is, I lost my livelihood to it, and now I stand to lose my saving
2.
by savemylife 15y ago
This is my current diagnosis, for those who might have been following my story from over a year ago ( http://news.ycombinator.com/item?id=1399450 ). I've been wanting to publish an update to this story on HN, but I'd been hoping for better
3.
by savemylife 16y ago
I actually have this book. I don't think it covers the Parathyroid though. If the Hyperparathyroidism doesn't pan out for me, I plan on asking the doctor to treat my Hypothyroidism more aggressively, to try and get my levels closer to perfe
4.
by savemylife 16y ago
Wow, so it sounds like even once you're diagnosed via lab tests, you still have to fight to get it "fixed". That really sucks. parathyroid.com says that if you have the high Calcium and PTH, you "have it, and need an operation". I dunno how
5.
Save My Life: Hyperparathyroidism?(savemylyfe.blogspot.com)
12 points by savemylife 16y ago|6 comments
6.
Save My Life update: "mild villous blunting"(savemylyfe.blogspot.com)
2 points by savemylife 16y ago|0 comments
7.
by savemylife 16y ago
Do you have any references to back this up? I'm curious specifically about your claim that caffeine negatively affects adrenal glands.
8.
by savemylife 16y ago
I don't think jerf meant that individuals who test positive (via serum or biopsy) should try a gluten-challenge, and then rule out Celiac based on not having a reaction. I think rather he meant that those who test negative on the standard
9.
by savemylife 16y ago
That's a good local reference to have, thanks!
10.
by savemylife 16y ago
I'm not a cider fan (and I've lived in Normandy, where they have the good stuff!) I've heard from a Belgian-beer aficionado friend that there are good rice beers, but haven't tried any yet. Beer is refreshing in the summer, but I'm also hap
11.
by savemylife 16y ago
Sure. Prior to the Celiac possibility, I did not eat that well. Lots of prepared (Healthy Choice/Lean Cuisine) frozen meals. Not exactly fast-food, but certainly not cooking. I weigh about 155 at the moment, which is down from 180 a year ag
12.
by savemylife 16y ago
I actually did go gluten-free for about 7 days prior to the biopsy (yeah, that was dumb). When I had my GI appointment, she had me go back on gluten for 3 weeks prior to the procedure, which I dutifully did. She said I was extremely uncom
13.
by savemylife 16y ago
"The tests for Celiac are extremely good. 95% sensitivity and specificity" Well my bloodwork came "strongly positive", and the biopsy was negative. So what do we make of that?
14.
by savemylife 16y ago
Yes, but if it takes a few months to start to feel better (improvement takes weeks-to-months, not days, right?), then it seems like I need to give it a good 3-4 months to test that out. Especially since it's hard to be truly eliminate all s
15.
by savemylife 16y ago
Thanks for the explanation. I hear you on the genetic testing. The whole process is frustrating. I do realize that I sound like that patient who wants to have "disease X" at any cost, and is looking for loopholes in the diagnostics. But I w
16.
by savemylife 16y ago
The doctor wants to run the genetic test because if that's negative, we can rule out Celiac. A positive result would only indicate that it's still a possibility. If the bloodwork had come back negative she wouldn't have bothered, and just r
17.
by savemylife 16y ago
I resisted the possibility of a psychological aspect to this for a long time, but eventually (when other things didn't pan out and enough doctors told me "it's all in your head") I gave in. So I've seen several psychiatrists (both in the US
18.
by savemylife 16y ago
Thanks, that's reassuring. The doctor said pretty much the same thing regarding not hitting the right patch of intestine with the biopsy. She also said I was a difficult patient and did not tolerate the procedure well, so she couldn't do as
19.
Save My Life: an update (Celiac biopsy negative)(savemylyfe.blogspot.com)
74 points by savemylife 16y ago|63 comments
20.
by savemylife 16y ago
39
21.
by savemylife 16y ago
I have some idea of what it's like because I spent a week and a half trying to follow the gluten-free diet before seeing the gastroenterologist. The first 4-5 days felt like pure deprivation, but after I stocked up on some basic "raw materi
22.
Save My Life: Celiac looking more probable(savemylyfe.blogspot.com)
2 points by savemylife 16y ago|8 comments
23.
by savemylife 16y ago
An excellent video short on the subject, by John Weldon: http://www.youtube.com/watch?v=pdxucpPq6Lc
24.
by savemylife 16y ago
Just listened to it; great link, thanks.
25.
by savemylife 16y ago
I actually have the opposite of that- hypothyroidism.
26.
by savemylife 16y ago
It's from February of this year. It's also in my queue to look into asking the doc to consider treating me into the more narrow range. But first I want to investigate the Celiac possibility, since (as you mentioned) the Thyroid might be sec
27.
by savemylife 16y ago
I very much agree. And for some reason doctors always deliver it like: "I have great news! We got your lab results back, and we can't find anything wrong with you! Wait, why aren't you smiling?" When you've been sick for a long time, and
28.
by savemylife 16y ago
OK, in that case I totally misunderstood. Apologies, and thanks for your concern. It is indeed hard to know what to make of a lot of the suggestions I receive here, but the quality level of the comments is way above the kind of discussion y
29.
by savemylife 16y ago
OP here. No, but many years ago I did have what I think was called a "lower GI series", where they pump you full of barium and take X-rays of your digestive tract. Yeah, that was really pleasant. I think the idea was to look for blockages.
30.
by savemylife 16y ago
edw519, I hesitated for a day before posting this update (and a good couple of weeks before my original post) for exactly that reason. I realize that this is Hacker News, and not a medical web site. So I truly apologize if what I've done is

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