9 ms·

Save My Life: an update

151 points by savemylife 16y ago

jlgosse 16y ago
I don't want to be a skeptic, but you need to ensure you haven't cut back on your fiber intake before you assume that you have Celiac disease and that cutting back on gluten was the correct decision. A lot of gluten-based products are also high in fiber, are they not? If this is the case, the lack of fiber in your diet might be the contributing factor to the reduced number of bathroom trips as of late. Regardless, I hope this works out for you. Sounds like you're headed in the right direction!
- savemylife 16y ago
  On the contrary, constructive skepticism is always welcome. I actually have the same concern (less food in == less food out, right?) PS: never, ever, thought I'd be discussing my bathroom habits on the Internet.
  - uptown 16y ago
    You must be new to the Internet.....
  - chipsy 16y ago
    Grains are actually vastly overrated as a fiber source(agribusiness marketing at work). On a per-calorie basis you'll do far better with green vegetables. Or if you want calories in your fiber you can eat fruit and nuts instead - just make sure with the nuts that they haven't been tainted by gluten products in processing.
  - rsheridan6 16y ago
    Maybe one of these would help us help you. http://gizmodo.com/5259381/twitter-toilet-tweets-your-poo http://gizmodo.com/5259381/twitter-toilet-tweets-your-poo
- grandalf 16y ago
  Hah, maybe if his gluten has come primarily from a high fiber cereal or a laxative. He's moving his bowels >5 times per day, which would require significant effort to consume enough fiber to trigger that through fiber alone.
michael_dorfman 16y ago
It may be perverse, but my first thought upon reading this was "Why would he stop eating gluten if he thinks it is Celiac disease? Wouldn't it be a more effective test to double or triple the gluten intake, and see if things get worse?"
- chipsy 16y ago
  The percentage difference between 0 and 1 is greater than the difference between 1 and 2. That is, if Celiac is it, eliminating it will cause a more dramatic change, since we can assume that most diets will contain some daily wheat. It's almost impossible to unconsciously avoid.
  - eru 16y ago
    At least in western society. On for example a classic Mongolian diet, it is possible `by accident'. (That is, lots of diary products and meat. Mongolia doesn't have a lot of arable land.)
- eru 16y ago
  Even from a pure scientific point of view: If you _had_ a binary reaction to Gluten (either it's there or it's not), then tripling your input wouldn't tell. Although I have a relative with celiac, I am not sure how the reactions to different quantities of gluten work. (She's generally avoiding gluten, understandably.)
- jerf 16y ago
  The way Celiac works is that it triggers an immune response to the gluten when it is in your villi in your small intestine, causing your immune system to attack them and basically blunt them, simultaneously ruining their ability to absorb, and lowering the effective absorption surface. Villi are structures in your small intestine that, like your lungs, are primarily there to increase the effective surface area for absorption of nutrients. In my experience, it actually pulses over a period of time. Presumably as your villi get a coincidental chance to heal as you just happen to eat a couple of gluten-free meals accidentally (which I would used to do with salads, not all of which have croutons), then they get hit with a fresh load of gluten in the next meal. So the point here is that doubling your gluten load may merely move your villi from "effectively destroyed" to "effectively destroyed", that is, no real change at all. (One downside of celiac is that while it is fairly treatable simply by avoiding gluten, you tend to get more sensitive over time, as if any does get through you've literally got a lot more to lose, and the fact that your small intestine is under attack is much more clear. I can literally feel it pulsing with inflammation-induced blood flow. I think maybe I used to be able to feel that sometimes but didn't realize that was Wrong(TM).) The way to diagnose it is to stop eating it for a long period of time, then have a load about three weeks in. You'll know then, because your healed villi will have an epic hissy-fit as your immune system tears into them. Based on what I've read this seems likely to be more determinative than any other test, including the colonoscopy ones; broadly speaking I'm a defender of Western medicine and procedures but I'm not sure that there isn't a bit of "if it isn't a lab procedure it's not a real test" bias here; colonoscopy and biopsy does not seem to be very reliable but it is still used a lot. Even my father, who definitely has it and is how I realized what I had was only told that it was "indicative but not conclusive". Much like the poster here, in fact. Like I said, I trust medicine in general but I'm inclined to set the threshold a bit lower than they do here, especially given the ease of a followup diet test. (If you're into medical stories on TV, I recommend some time with the Celiac page on wikipedia. It's a legitimately interesting disease; it's considered autoimmune, but it's unusual in that it's attacking the body for having a foreign protein. It's sort of an allergy, but differs in significant ways. It resists conventional classifications quite effectively.)
savemylife 16y ago
Blog update has links to my latest lab tests. Hoping to get some feedback on that, as a few folks were interested in seeing them from my original post.
kaddar 16y ago
You should look into h-pylori stool tests. My doctor didn't catch my problems until I had a stool test done. It could be a stomach bacteria.
edw519 16y ago
Your first post was one of the more interesting I've ever seen here at hn. Lots of good discussion about an issue way more important than database normalization, encryption, or valuations. And while I appreciate the follow-up to that great thread, I caution you to proceed carefully. Engaging a caring community of bright minds can be very cool, but please beware crossing that thin line into crowdsourcing your health care. I sincerely hope you find the help you need, but dude, find a good health care practitioner. If you haven't yet, keep looking. We're not it.
- oliveoil 16y ago
  On the other hand, the story is not upvoted to the top of HN for no reason.
  - grandalf 16y ago
    I think it's due to a fascination with the failure of medical science to "fix" this guy after 18 years. If there is one bias that intelligent, technologically oriented people suffer from, it's an over-confidence in medicine and an excessively mechanistic view of the human body. The body is more like an aquarium full of a variety of species than an engine in which a part may or may not function.
    - ledger123 16y ago
      Homeopathy takes the body as a whole instead of independently working parts (hearts, lungs, brain etc.). You cannot prescribe correct homeopathy medicine for headache, for example, without taking into account all the mental and physical symptoms. Though I am not going to start another controversial thread (about homeopathy), I just wonder why the mainstream medical science does not looks at human malfunctioning as a whole system. In other words why there are so many organ/tissues/functions specialists? May be (with main stream medical science) we are on wrong path and have made things so complicated that it has impossible to consider the whole human body in one shot in any particular disease. Though we fully know that analyzing/treating the parts in a complex system won't take us too far.
gfodor 16y ago
Never underestimate the placebo effect. You're gonna need a few weeks on your new diet to really be sure.
- grandalf 16y ago
  It would actually take up to 6 months on the new diet to really be certain. Also, there is gluten in all sorts of unexpected foods so it will take a lot of discipline and research on his part to actually avoid it fully.
m0shen 16y ago
Have you had a colonoscopy?
- 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. There was no biopsy taken, ever.
  - m0shen 16y ago
    From the experience in my family I would say inquire about one. A family member had many blood tests for a mystery illness, some of which were ambiguous for Celiac. The only definitive tests were done via biopsy and visual inspection of the colon. The damage was so severe that a section of colon had to be removed.
davidwilson 16y ago
The more I think about your symptoms, the more I am reminded of Graves' disease. Very rare in men but the other symptoms seem to fit. But just take note here that I am not a doctor - just a well read person interested in medical matters.
- deleted 16y ago
  [deleted]
- savemylife 16y ago
  I actually have the opposite of that- hypothyroidism.
amih 16y ago
You seem to be acidic, your urine pH is 5.5 I am no specialist in medicine or nutrition but this seems to mean you eat too much cooked food and too little fresh fruit and vegetables. Eat more apples, bananas, oranges and watermelons for calories, don't worry about the sugar, this is not sucrose. For minerals and other good stuff eat green leaves: lettuce, spinach, kale and cucumbers. This might seems contradicting the theory you're testing at the moment, it is full of fiber, so you might reject it, but please consider this perhaps after you have some conclusions with regards the Celiac. There are some theories regarding cooked food that claim there is a strong immune reaction in the human body after eating a cooked meal, the body is exposed to massive amounts of deformed protein and each person may react differently. You will go back to several bowel movements a day eating many fruits and vegetables but that's a small price to pay for your health. Feel free to ignore me. Good luck with your health!
- eru 16y ago
  Any studies supporting those views? The pH-theory of illness sounds quite bogus to me--the body has all sorts of pH-buffers build in, and can produce it's own acids and bases.
  - pradocchia 16y ago
    The pH-theory of illness originated in Japan as best I can tell, and has spread to China in recent years. Perhaps Korea too. Basically, the idea is that the body prefers a slightly alkaline pH (stay with me now). Rice, meat, cooked foods, coffee, black tea and smoking all acidify the blood, where as fresh vegetables and green tea de-acidify it. Acidified blood then leads to cancer, heart disease, and other chronic ills. Ok, but the body naturally maintains blood pH in a narrow range. If this theory has any truth to it, then it wouldn't be "acidified blood" that's bad for you, but the energy and nutrients consumed, and the byproducts created and disposed of, in the course of maintaining proper pH against an acidifying diet. Low-pH urine might be a sign of the body working overtime to keep the blood neutral. To this end, you can buy water ionizers that produce alkaline water, and drink that rather than normal water. According to the product literature I saw (my neighbors in China had one installed--a lot of money for a retired couple), the original research looked at villages around the world where people lived longer than their average countrymen. The common thread was slightly alkaline water (supposedly). I went online to check sources, and indeed, there was a lot of university-affiliated research along these lines in Japan. This was 6 years ago. I'm sure you can find more information online, if you are curious.
jdrock 16y ago
I'm kind of surprised Celiac was not tested before. I know a quite a few people with it, so I thought it was a fairly common thing to test for and identify.
- flatline 16y ago
  I was tested for it about a year ago, via colonoscopy + biopsy. The doctor said that they are just now starting to test for it routinely, as it has recently been considered to be drastically under-diagnosed. I also know several people who have been diagnosed with it, one of whom ate a gluten-free diet for over a year with little benefit. The doctors eventually decided it was not Celiac. I am not a doctor or in the medical field but it appears that the diagnosis is not terribly straightforward.
  - grandalf 16y ago
    It is my understanding that severe cases have generally been diagnosed accurately/often, but less severe cases (like the one the OP might have) can be misdiagnosed or go undiagnosed. I have a second cousin who had suffered from a variety of mild symptoms for his whole life and was eventually diagnosed at age 55. Crazy!
adrianwaj 16y ago
How about testing for Lyme again? How to find an LLMD (Lyme Literate Medical Doctor) http://www.chroniclymedisease.com/llmd-referrals http://www.chroniclymedisease.com/llmd-referrals
- phreanix 16y ago
  yeah, wondering about this. Quite a few people (including myself) pointed it out. Please keep us updated and good luck.
- carbocation 16y ago
  For anyone reading this at some point in the future: this stuff is complete garbage and has been repudiated not only by the medical establishment broadly, but also specifically by the doctor who discovered Lyme disease's causative agent.
  - adrianwaj 16y ago
    Supporting evidence? What's it about Lyme that people would make this stuff up? The medical establishment still practices medicine. Practice being the operative word.
    - carbocation 16y ago
      Supporting evidence that the claims of Lyme advocacy groups aren't backed up? Well, that's just it - there is no evidence that supports their claims. There is just anecdote that stands in conflict with biochemical and/or commonly agreed upon diagnostic criteria. Allen Steere's wikipedia page gives a nice introduction to the controversy: http://en.wikipedia.org/wiki/Allen_Steere http://en.wikipedia.org/wiki/Allen_Steere Why did chronic Lyme become a grab bag? I don't know for sure - it did so before I entered medical school, and in medical school we actually don't waste too much time (or perhaps we spend too little) talking about quackery. Rejecting the CDC's diagnostic criteria and creating their own -- and, conveniently, profiting from doing so -- makes me immediately hypervigilant around physicians who claim to treat "chronic Lyme." In fact, just today I listened to an hourlong talk today by Allen Steere at MGH about Lyme disease, and he very clearly laid out what Stage 3 Lyme disease looks like: basically, arthritis +/- neurological deficits. "Chronic Lyme" is distinguished from Stage 3 Lyme disease by being a grabbag diagnosis without accepted, objective diagnostic criteria. Multiple randomized controlled trials have been attempted on patients with "chronic Lyme," and in none of these trials did treatment with antibiotics help. The disease that these people are suffering from is, no doubt, real, but it is not caused by chronic, persistent infection with Borrelia burgdoferi, and it is not helped by antibiotics.
chasingsparks 16y ago
In my experience, waiting for doctors appointments and test results is the hardest part of getting treated. When I was told I had a "brain tumor" (inaccurate, but verbatim) after a year of waiting, I actually smiled. I just was happy that finally something was happening. Best of luck to you, but until they find something definitively, mind your sanity. Don't get too excited and wrapped up in Celiac yet; it might be the wrong diagnosis. Each time you get a wrong diagnosis, you drop a little lower. Being invested in a particular diagnosis and then having it be disproven is more like a free-fall.
- grandalf 16y ago
  This is very good advice.
- pedalpete 16y ago
  I read Randy Pausch's book The Last Lecture yesterday, and in the book he mentions to ask "how soon can I get the results". As he only had months to live, he didn't want to wait around. He was always surprised at how big an effect that one question had in getting what he wanted. He just had to ask.
- 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 with no diagnosis, you'd actually be happy to hear that you have some horrible disease, if it means you can at least do something about it.
techiferous 16y ago
I would suggest keeping a daily diary of what you eat, your energy level, your mood, how much you slept and your sleep quality (insomnia, hypersomnia), and any other symptoms or potential causes you'd like to track. A Google spreadsheet would probably work well. If you are disciplined and track good data, if after a year you haven't figured anything out yet, you've got a boatload of data to analyze and may be able to unlock the mystery yourself.
orblivion 16y ago
"In the mean time, I got all excited about the possibility of Celiac..." Man, it says something about your situation when you're excited about Celiac.
shrikant 16y ago
And rksprst wins! (http://news.ycombinator.com/item?id=1399643 http://news.ycombinator.com/item?id=1399643) p.s: (I'm really sorry if this sounds a tad tasteless, but - and I am not alone in this, it would appear - I have been following this with a little more interest than any of the other HN submissions, and remembered this being mentioned as a possibility, so...)
rksprst 16y ago
Hope everything turns out well. If it is Celiac, it's easily treated and there are a ton of resources for you out there. It seems that everything has gluten in it; but it's not really that bad. There are several iPhone apps that tell you what has gluten in it (just be careful some of them aren't accurate); there are replacement flours that work just as well as real flour so you can bake bread, cookies, etc. They sell gluten-free pasta, gluten-free beer and your local Whole Foods should have a big gluten free section in it. Even the big-brand grocery stores are starting to have gluten free sections. You can also order a lot of stuff online. The Celiac Disease Foundation ( http://celiac.org/ http://celiac.org/ ) is also a great resource, you can call them up and talk to them - they are extremely knowledgeable and friendly. There's also local celiac support groups, if you want you can probably find one in your area. Also, just a thing to know: a lot of restaurants will have foods that are gluten-free. But they prepare the food in the same place as the rest of the food that has gluten which leads to contamination and you end up getting gluten in your food.
- aaronbrethorst 16y ago
  There was a good program on celiac disease on Seattle's NPR affiliate this morning: http://kuow.org/program.php?current=WK1 http://kuow.org/program.php?current=WK1
  - savemylife 16y ago
    Just listened to it; great link, thanks.
rsheridan6 16y ago
Your WBC count is low. Your body probably can't fight off infections very well. You also have elevated IgA. Have you seen a hematology-oncology doctor? It could be that you have some sort of infection that is hard to identify or treat. Chronic inflammation can cause a low white count - you have symptoms of inflammation and should have inflammatory markers checked such as CRP, homocysteine, and ESR. Even if it turns out that you have an untreatable infection, maybe avoiding inflammatory foods would help manage your symptoms.
greatreorx 16y ago
In your original post you said that your thyroid issue is being treated and in normal range. I'm not sure if the blood work you posted is the most recent, but it shows a TSH of 4.1 - which the lab considers in normal range, but some doctors would not. "In November 2002, American Association of Clinical Endocrinologists(AACE) published revised guidelines that provided a new range for normal thyroid function. Until this time, doctors had relied on a normal TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder who tested outside the boundaries of that range. AACE encouraged doctors to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.04. AACE believes the new range will result in improved accuracy of diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated." http://www.aace.com/public/awareness/tam/2004/tsh.php http://www.aace.com/public/awareness/tam/2004/tsh.php Most of your symptoms don't seem thyroid related, so it wouldn't surprise me if this is more of a down stream symptom from whatever else is going on with you.
- cperciva 16y ago
  I agree -- the 4.1 jumped out at me, along with the 0.8 fT4 (just barely within the lab normal 0.7 -- 1.5). Interestingly, the thyroid tests from July 2009 have a TSH of 0.12 and a fT4 of 1.7 -- savemylife, was your thyroxine dosage decreased after the July 2009 tests? If yes, you might want to get your endocrinologist to put you halfway between the two dosages. I agree with greatreorx that this is almost certainly not the only thing going on, though -- but in keeping with Hickam's dictum ("Patients can have as many diseases as they damn well please") you shouldn't ignore the possible contribution of thyroid issues simply because they can't explain everything.
- 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 secondary. Thanks.
  - cperciva 16y ago
carbocation 16y ago
It would be rare for Celiac to exhibit such extreme symptoms, and your blood tests do not scream, "He has Celiac!" I will be surprised if that's ultimately what you have.* On the other hand, your WBC abnormalities are interesting. I still wonder if you've had an SPEP/UPEP, although your normal hematocrit is, to an extent, reassuring. Historically, how has your wound healing been? * = Edit: Especially given that you have elevated IgA across the board, it's not all that surprising that you have an elevated anti-transglutaminase IgA.
sutro 16y ago
Thanks for the update on your bowel movements. Might I suggest a savemylife bowel movement tracker widget? That will help your bowel movements go viral.
deadmansshoes 16y ago
http://www.ehow.com/how_2247032_deal-hypochondria.html http://www.ehow.com/how_2247032_deal-hypochondria.html
niels_olson 16y ago
Eventually, post-industrial society syndrome will be a viable diagnosis. Unfortunately, the treatment is to get rid of all your stuff.

151 points by savemylife 16y ago

I don't want to be a skeptic, but you need to ensure you haven't cut back on your fiber intake before you assume that you have Celiac disease and that cutting back on gluten was the correct decision. A lot of gluten-based products are also high in fiber, are they not? If this is the case, the lack of fiber in your diet might be the contributing factor to the reduced number of bathroom trips as of late. Regardless, I hope this works out for you. Sounds like you're headed in the right direction!

savemylife 16y ago
On the contrary, constructive skepticism is always welcome. I actually have the same concern (less food in == less food out, right?) PS: never, ever, thought I'd be discussing my bathroom habits on the Internet.
- uptown 16y ago
  You must be new to the Internet.....
- chipsy 16y ago
  Grains are actually vastly overrated as a fiber source(agribusiness marketing at work). On a per-calorie basis you'll do far better with green vegetables. Or if you want calories in your fiber you can eat fruit and nuts instead - just make sure with the nuts that they haven't been tainted by gluten products in processing.
- rsheridan6 16y ago
  Maybe one of these would help us help you. http://gizmodo.com/5259381/twitter-toilet-tweets-your-poo http://gizmodo.com/5259381/twitter-toilet-tweets-your-poo
grandalf 16y ago
Hah, maybe if his gluten has come primarily from a high fiber cereal or a laxative. He's moving his bowels >5 times per day, which would require significant effort to consume enough fiber to trigger that through fiber alone.

michael_dorfman 16y ago

It may be perverse, but my first thought upon reading this was "Why would he stop eating gluten if he thinks it is Celiac disease? Wouldn't it be a more effective test to double or triple the gluten intake, and see if things get worse?"

chipsy 16y ago
The percentage difference between 0 and 1 is greater than the difference between 1 and 2. That is, if Celiac is it, eliminating it will cause a more dramatic change, since we can assume that most diets will contain some daily wheat. It's almost impossible to unconsciously avoid.
- eru 16y ago
  At least in western society. On for example a classic Mongolian diet, it is possible `by accident'. (That is, lots of diary products and meat. Mongolia doesn't have a lot of arable land.)
eru 16y ago
Even from a pure scientific point of view: If you _had_ a binary reaction to Gluten (either it's there or it's not), then tripling your input wouldn't tell. Although I have a relative with celiac, I am not sure how the reactions to different quantities of gluten work. (She's generally avoiding gluten, understandably.)
jerf 16y ago
The way Celiac works is that it triggers an immune response to the gluten when it is in your villi in your small intestine, causing your immune system to attack them and basically blunt them, simultaneously ruining their ability to absorb, and lowering the effective absorption surface. Villi are structures in your small intestine that, like your lungs, are primarily there to increase the effective surface area for absorption of nutrients. In my experience, it actually pulses over a period of time. Presumably as your villi get a coincidental chance to heal as you just happen to eat a couple of gluten-free meals accidentally (which I would used to do with salads, not all of which have croutons), then they get hit with a fresh load of gluten in the next meal. So the point here is that doubling your gluten load may merely move your villi from "effectively destroyed" to "effectively destroyed", that is, no real change at all. (One downside of celiac is that while it is fairly treatable simply by avoiding gluten, you tend to get more sensitive over time, as if any does get through you've literally got a lot more to lose, and the fact that your small intestine is under attack is much more clear. I can literally feel it pulsing with inflammation-induced blood flow. I think maybe I used to be able to feel that sometimes but didn't realize that was Wrong(TM).) The way to diagnose it is to stop eating it for a long period of time, then have a load about three weeks in. You'll know then, because your healed villi will have an epic hissy-fit as your immune system tears into them. Based on what I've read this seems likely to be more determinative than any other test, including the colonoscopy ones; broadly speaking I'm a defender of Western medicine and procedures but I'm not sure that there isn't a bit of "if it isn't a lab procedure it's not a real test" bias here; colonoscopy and biopsy does not seem to be very reliable but it is still used a lot. Even my father, who definitely has it and is how I realized what I had was only told that it was "indicative but not conclusive". Much like the poster here, in fact. Like I said, I trust medicine in general but I'm inclined to set the threshold a bit lower than they do here, especially given the ease of a followup diet test. (If you're into medical stories on TV, I recommend some time with the Celiac page on wikipedia. It's a legitimately interesting disease; it's considered autoimmune, but it's unusual in that it's attacking the body for having a foreign protein. It's sort of an allergy, but differs in significant ways. It resists conventional classifications quite effectively.)

savemylife 16y ago

Blog update has links to my latest lab tests. Hoping to get some feedback on that, as a few folks were interested in seeing them from my original post.

kaddar 16y ago

You should look into h-pylori stool tests. My doctor didn't catch my problems until I had a stool test done. It could be a stomach bacteria.

edw519 16y ago

Your first post was one of the more interesting I've ever seen here at hn. Lots of good discussion about an issue way more important than database normalization, encryption, or valuations. And while I appreciate the follow-up to that great thread, I caution you to proceed carefully. Engaging a caring community of bright minds can be very cool, but please beware crossing that thin line into crowdsourcing your health care. I sincerely hope you find the help you need, but dude, find a good health care practitioner. If you haven't yet, keep looking. We're not it.

oliveoil 16y ago
On the other hand, the story is not upvoted to the top of HN for no reason.
- grandalf 16y ago
  I think it's due to a fascination with the failure of medical science to "fix" this guy after 18 years. If there is one bias that intelligent, technologically oriented people suffer from, it's an over-confidence in medicine and an excessively mechanistic view of the human body. The body is more like an aquarium full of a variety of species than an engine in which a part may or may not function.
  - ledger123 16y ago
    Homeopathy takes the body as a whole instead of independently working parts (hearts, lungs, brain etc.). You cannot prescribe correct homeopathy medicine for headache, for example, without taking into account all the mental and physical symptoms. Though I am not going to start another controversial thread (about homeopathy), I just wonder why the mainstream medical science does not looks at human malfunctioning as a whole system. In other words why there are so many organ/tissues/functions specialists? May be (with main stream medical science) we are on wrong path and have made things so complicated that it has impossible to consider the whole human body in one shot in any particular disease. Though we fully know that analyzing/treating the parts in a complex system won't take us too far.

gfodor 16y ago

Never underestimate the placebo effect. You're gonna need a few weeks on your new diet to really be sure.

grandalf 16y ago
It would actually take up to 6 months on the new diet to really be certain. Also, there is gluten in all sorts of unexpected foods so it will take a lot of discipline and research on his part to actually avoid it fully.

m0shen 16y ago

Have you had a colonoscopy?

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. There was no biopsy taken, ever.
- m0shen 16y ago
  From the experience in my family I would say inquire about one. A family member had many blood tests for a mystery illness, some of which were ambiguous for Celiac. The only definitive tests were done via biopsy and visual inspection of the colon. The damage was so severe that a section of colon had to be removed.

davidwilson 16y ago

The more I think about your symptoms, the more I am reminded of Graves' disease. Very rare in men but the other symptoms seem to fit. But just take note here that I am not a doctor - just a well read person interested in medical matters.

deleted 16y ago
[deleted]
savemylife 16y ago
I actually have the opposite of that- hypothyroidism.

amih 16y ago

You seem to be acidic, your urine pH is 5.5 I am no specialist in medicine or nutrition but this seems to mean you eat too much cooked food and too little fresh fruit and vegetables. Eat more apples, bananas, oranges and watermelons for calories, don't worry about the sugar, this is not sucrose. For minerals and other good stuff eat green leaves: lettuce, spinach, kale and cucumbers. This might seems contradicting the theory you're testing at the moment, it is full of fiber, so you might reject it, but please consider this perhaps after you have some conclusions with regards the Celiac. There are some theories regarding cooked food that claim there is a strong immune reaction in the human body after eating a cooked meal, the body is exposed to massive amounts of deformed protein and each person may react differently. You will go back to several bowel movements a day eating many fruits and vegetables but that's a small price to pay for your health. Feel free to ignore me. Good luck with your health!

eru 16y ago
Any studies supporting those views? The pH-theory of illness sounds quite bogus to me--the body has all sorts of pH-buffers build in, and can produce it's own acids and bases.
- pradocchia 16y ago
  The pH-theory of illness originated in Japan as best I can tell, and has spread to China in recent years. Perhaps Korea too. Basically, the idea is that the body prefers a slightly alkaline pH (stay with me now). Rice, meat, cooked foods, coffee, black tea and smoking all acidify the blood, where as fresh vegetables and green tea de-acidify it. Acidified blood then leads to cancer, heart disease, and other chronic ills. Ok, but the body naturally maintains blood pH in a narrow range. If this theory has any truth to it, then it wouldn't be "acidified blood" that's bad for you, but the energy and nutrients consumed, and the byproducts created and disposed of, in the course of maintaining proper pH against an acidifying diet. Low-pH urine might be a sign of the body working overtime to keep the blood neutral. To this end, you can buy water ionizers that produce alkaline water, and drink that rather than normal water. According to the product literature I saw (my neighbors in China had one installed--a lot of money for a retired couple), the original research looked at villages around the world where people lived longer than their average countrymen. The common thread was slightly alkaline water (supposedly). I went online to check sources, and indeed, there was a lot of university-affiliated research along these lines in Japan. This was 6 years ago. I'm sure you can find more information online, if you are curious.

jdrock 16y ago

I'm kind of surprised Celiac was not tested before. I know a quite a few people with it, so I thought it was a fairly common thing to test for and identify.

flatline 16y ago
I was tested for it about a year ago, via colonoscopy + biopsy. The doctor said that they are just now starting to test for it routinely, as it has recently been considered to be drastically under-diagnosed. I also know several people who have been diagnosed with it, one of whom ate a gluten-free diet for over a year with little benefit. The doctors eventually decided it was not Celiac. I am not a doctor or in the medical field but it appears that the diagnosis is not terribly straightforward.
- grandalf 16y ago
  It is my understanding that severe cases have generally been diagnosed accurately/often, but less severe cases (like the one the OP might have) can be misdiagnosed or go undiagnosed. I have a second cousin who had suffered from a variety of mild symptoms for his whole life and was eventually diagnosed at age 55. Crazy!

adrianwaj 16y ago

How about testing for Lyme again? How to find an LLMD (Lyme Literate Medical Doctor) http://www.chroniclymedisease.com/llmd-referrals http://www.chroniclymedisease.com/llmd-referrals

phreanix 16y ago
yeah, wondering about this. Quite a few people (including myself) pointed it out. Please keep us updated and good luck.
carbocation 16y ago
For anyone reading this at some point in the future: this stuff is complete garbage and has been repudiated not only by the medical establishment broadly, but also specifically by the doctor who discovered Lyme disease's causative agent.
- adrianwaj 16y ago
  Supporting evidence? What's it about Lyme that people would make this stuff up? The medical establishment still practices medicine. Practice being the operative word.
  - carbocation 16y ago
    Supporting evidence that the claims of Lyme advocacy groups aren't backed up? Well, that's just it - there is no evidence that supports their claims. There is just anecdote that stands in conflict with biochemical and/or commonly agreed upon diagnostic criteria. Allen Steere's wikipedia page gives a nice introduction to the controversy: http://en.wikipedia.org/wiki/Allen_Steere http://en.wikipedia.org/wiki/Allen_Steere Why did chronic Lyme become a grab bag? I don't know for sure - it did so before I entered medical school, and in medical school we actually don't waste too much time (or perhaps we spend too little) talking about quackery. Rejecting the CDC's diagnostic criteria and creating their own -- and, conveniently, profiting from doing so -- makes me immediately hypervigilant around physicians who claim to treat "chronic Lyme." In fact, just today I listened to an hourlong talk today by Allen Steere at MGH about Lyme disease, and he very clearly laid out what Stage 3 Lyme disease looks like: basically, arthritis +/- neurological deficits. "Chronic Lyme" is distinguished from Stage 3 Lyme disease by being a grabbag diagnosis without accepted, objective diagnostic criteria. Multiple randomized controlled trials have been attempted on patients with "chronic Lyme," and in none of these trials did treatment with antibiotics help. The disease that these people are suffering from is, no doubt, real, but it is not caused by chronic, persistent infection with Borrelia burgdoferi, and it is not helped by antibiotics.

chasingsparks 16y ago

In my experience, waiting for doctors appointments and test results is the hardest part of getting treated. When I was told I had a "brain tumor" (inaccurate, but verbatim) after a year of waiting, I actually smiled. I just was happy that finally something was happening. Best of luck to you, but until they find something definitively, mind your sanity. Don't get too excited and wrapped up in Celiac yet; it might be the wrong diagnosis. Each time you get a wrong diagnosis, you drop a little lower. Being invested in a particular diagnosis and then having it be disproven is more like a free-fall.

grandalf 16y ago
This is very good advice.
pedalpete 16y ago
I read Randy Pausch's book The Last Lecture yesterday, and in the book he mentions to ask "how soon can I get the results". As he only had months to live, he didn't want to wait around. He was always surprised at how big an effect that one question had in getting what he wanted. He just had to ask.
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 with no diagnosis, you'd actually be happy to hear that you have some horrible disease, if it means you can at least do something about it.

techiferous 16y ago

I would suggest keeping a daily diary of what you eat, your energy level, your mood, how much you slept and your sleep quality (insomnia, hypersomnia), and any other symptoms or potential causes you'd like to track. A Google spreadsheet would probably work well. If you are disciplined and track good data, if after a year you haven't figured anything out yet, you've got a boatload of data to analyze and may be able to unlock the mystery yourself.

orblivion 16y ago

"In the mean time, I got all excited about the possibility of Celiac..." Man, it says something about your situation when you're excited about Celiac.

shrikant 16y ago

And rksprst wins! (http://news.ycombinator.com/item?id=1399643 http://news.ycombinator.com/item?id=1399643) p.s: (I'm really sorry if this sounds a tad tasteless, but - and I am not alone in this, it would appear - I have been following this with a little more interest than any of the other HN submissions, and remembered this being mentioned as a possibility, so...)

rksprst 16y ago

Hope everything turns out well. If it is Celiac, it's easily treated and there are a ton of resources for you out there. It seems that everything has gluten in it; but it's not really that bad. There are several iPhone apps that tell you what has gluten in it (just be careful some of them aren't accurate); there are replacement flours that work just as well as real flour so you can bake bread, cookies, etc. They sell gluten-free pasta, gluten-free beer and your local Whole Foods should have a big gluten free section in it. Even the big-brand grocery stores are starting to have gluten free sections. You can also order a lot of stuff online. The Celiac Disease Foundation ( http://celiac.org/ http://celiac.org/ ) is also a great resource, you can call them up and talk to them - they are extremely knowledgeable and friendly. There's also local celiac support groups, if you want you can probably find one in your area. Also, just a thing to know: a lot of restaurants will have foods that are gluten-free. But they prepare the food in the same place as the rest of the food that has gluten which leads to contamination and you end up getting gluten in your food.

aaronbrethorst 16y ago
There was a good program on celiac disease on Seattle's NPR affiliate this morning: http://kuow.org/program.php?current=WK1 http://kuow.org/program.php?current=WK1
- savemylife 16y ago
  Just listened to it; great link, thanks.

rsheridan6 16y ago

Your WBC count is low. Your body probably can't fight off infections very well. You also have elevated IgA. Have you seen a hematology-oncology doctor? It could be that you have some sort of infection that is hard to identify or treat. Chronic inflammation can cause a low white count - you have symptoms of inflammation and should have inflammatory markers checked such as CRP, homocysteine, and ESR. Even if it turns out that you have an untreatable infection, maybe avoiding inflammatory foods would help manage your symptoms.

greatreorx 16y ago

In your original post you said that your thyroid issue is being treated and in normal range. I'm not sure if the blood work you posted is the most recent, but it shows a TSH of 4.1 - which the lab considers in normal range, but some doctors would not. "In November 2002, American Association of Clinical Endocrinologists(AACE) published revised guidelines that provided a new range for normal thyroid function. Until this time, doctors had relied on a normal TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder who tested outside the boundaries of that range. AACE encouraged doctors to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.04. AACE believes the new range will result in improved accuracy of diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated." http://www.aace.com/public/awareness/tam/2004/tsh.php http://www.aace.com/public/awareness/tam/2004/tsh.php Most of your symptoms don't seem thyroid related, so it wouldn't surprise me if this is more of a down stream symptom from whatever else is going on with you.

cperciva 16y ago
I agree -- the 4.1 jumped out at me, along with the 0.8 fT4 (just barely within the lab normal 0.7 -- 1.5). Interestingly, the thyroid tests from July 2009 have a TSH of 0.12 and a fT4 of 1.7 -- savemylife, was your thyroxine dosage decreased after the July 2009 tests? If yes, you might want to get your endocrinologist to put you halfway between the two dosages. I agree with greatreorx that this is almost certainly not the only thing going on, though -- but in keeping with Hickam's dictum ("Patients can have as many diseases as they damn well please") you shouldn't ignore the possible contribution of thyroid issues simply because they can't explain everything.
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 secondary. Thanks.
- cperciva 16y ago

carbocation 16y ago

It would be rare for Celiac to exhibit such extreme symptoms, and your blood tests do not scream, "He has Celiac!" I will be surprised if that's ultimately what you have.* On the other hand, your WBC abnormalities are interesting. I still wonder if you've had an SPEP/UPEP, although your normal hematocrit is, to an extent, reassuring. Historically, how has your wound healing been? * = Edit: Especially given that you have elevated IgA across the board, it's not all that surprising that you have an elevated anti-transglutaminase IgA.

sutro 16y ago

Thanks for the update on your bowel movements. Might I suggest a savemylife bowel movement tracker widget? That will help your bowel movements go viral.

deadmansshoes 16y ago

http://www.ehow.com/how_2247032_deal-hypochondria.html http://www.ehow.com/how_2247032_deal-hypochondria.html

niels_olson 16y ago

Eventually, post-industrial society syndrome will be a viable diagnosis. Unfortunately, the treatment is to get rid of all your stuff.