

Save My Life: an update - savemylife
http://savemylyfe.blogspot.com/2010/06/hmm-maybe-celiac.html

======
chasingsparks
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.

~~~
pedalpete
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.

------
greatreorx
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>

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.

~~~
savemylife
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
BTW, since oral thyroxine is (obviously) gastrointestinally absorbed, you may
find that your required dosage decreases as your gastrointestinal symptoms
improve -- so I recommend keeping your eyes open for symptoms of
hyperthyroidism.

------
jlgosse
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
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.

~~~
chipsy
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.

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

~~~
grandalf
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.

------
carbocation
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.

------
edw519
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.

~~~
savemylife
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 inappropriate. HN is a great place, and I'd never want to abuse it.

In the end I rationalized my decision by thinking that if my post isn't
actually appropriate, that it simply wouldn't get voted up. It's a community
site, and in the end the community chose to vote it up. I think that's worth
something, though I certainly do see your point.

I'd make one correction to your argument though- I'm trying to crowdsource a
diagnosis, not my medical care. There is a big difference.

~~~
edw519
savemylife, my comment was meant for _your_ well being, not ours.

Nothing can be more important that saving a life so your threads are not only
appropriate, they are most welcome.

I don't know if I could be as brave as you are in your quest, but obviously
you have been through quite a bit and I trust you know what you're doing.

I consider diagnosis to be a subset of health care, hence my concern. Take
everything here with a grain of salt. I hope you find a trusted health care
professional, and more importantly, good health. Best wishes.

~~~
savemylife
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 you would get in most places by posting such a story ("have you
tried crystals or magnets?") Already it has turned up something (Celiac) that
apparently has been entirely overlooked by all of the doctors I have seen thus
far. Even if that turns out to be a dead end, it's worth knowing about and
investigating.

~~~
kellishaver
I think the important distinction here is that you're not just saying "Hey,
Internet, what's wrong with me?" and leaving it at that. You've been under the
care of (many?) physicians and continue to be. So you're not taking the
Internet's word for it and rushing off to try some hair-brained "cure" (Trying
a gluten free diet, even if that's not the issue, certainly won't harm you.
I'm sure if the Internet had said "drink a bucket of Draino" you'd have drawn
a line). You're just looking for information and ideas beyond what you and the
doctor have already discussed/tested for. You're just exploring other
possibilities and then following up on that with your doctor. I'm glad to see
you're finally starting to get some answers and I hope you're able to, at
least, get to the bottom of all of these problems.

Keep in mind, too, though, you may not have one definitive diagnosis. You
could have _______ and also ________, or ________ caused by ________, which
then makes ________ worse. The body is a complicated thing.

~~~
Robin_Message
Did anyone else instinctively highlight the end of this to see the spoilers?

~~~
prawn
Only after reading your comment!

~~~
kellishaver
The sad part is, after reading his reply..... so did I.

------
adrianwaj
How about testing for Lyme again?

How to find an LLMD (Lyme Literate Medical Doctor)

<http://www.chroniclymedisease.com/llmd-referrals>

~~~
carbocation
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
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
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>

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.

~~~
adrianwaj
I think the key here is to establish chemical diagnosis from clinical
diagnosis. There was a vaccine developed for Lyme but since withdrawn. I'd say
that Lyme as a chemical condition and subsequent symptoms does exist. But then
there are other people that wrongly attribute their problems to Lyme, or there
are people with real Lyme that don't all respond consistently to antibiotics.
So it has since moved into the too hard or too misunderstood basket. Lyme
exists: so what, if doctors (and patients/sufferers) can't get a grip on it,
that's part of life too.

So you have this guy here who said he was diagnosed with Lyme and was treated
for a year and did not improve, and is now not answering questions about Lyme.

edit: I bet some doctor's (or the doctor that prescribed) told him that Lyme
doesn't exist, or you couldn't have it after all those antibiotics... etc and
that's why he's so excited about a Celiac diagnosis (or rather anything but
Lyme), because it means he can sweep Lyme under the rug, exactly like the
doctor. But it won't help him though, and the doctor who told him to forget
about Lyme ultimately doesn't care because he's not the one with it. The edge
of science is a fuzzy place, but some people are pushed right up to it!

~~~
carbocation
For Lyme disease, you literally cannot disentangle the biological diagnosis
from the clinical diagnosis. Why? Lyme titers can stay positive indefinitely
because you do not measure borrelia directly. It's a spirochete, so this is
completely understandable. Once you get infected one time, you will make
antibody for years, or indefinitely. This is why the CDC requires biochemical
evidence _and the right clinical context_.

Nobody is saying Lyme doesn't exist. Most doctors have diagnosed Lyme - there
are over 30,000 reported cases annually. It's neither rare nor controversial.
I am saying that Stage 3 Lyme has a specific set of symptoms that are
inconsistent with what savemylife describes. Allen Steere is saying that
"chronic Lyme" is not an infectious disease caused by borrelia.

Savemylife's Lyme diagnosis was done only biochemically, which is not
consistent with the CDC diagnostic criteria for reasons I described above. He
was then treated for a year - a risky proposition in itself - and was
unhelped. Spirochetes are notoriously susceptible to antibiotics. If you only
take one dose of doxy, you cure ~75% of all Lyme cases. It's that easy! After
2 weeks of doxy, the cure rate is nearly 100%. After a year, you are simply
eradicating native gut flora. He does not have Lyme disease. He has a real
problem; this is not it, and pushing him towards sexy, grabbag, but clearly
incorrect diagnostic labels helps nobody.

------
savemylife
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.

------
jdrock
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
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
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!

------
techiferous
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.

------
rksprst
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/> ) 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
There was a good program on celiac disease on Seattle's NPR affiliate this
morning: <http://kuow.org/program.php?current=WK1>

~~~
savemylife
Just listened to it; great link, thanks.

------
shrikant
And rksprst wins! (<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...)_

------
kaddar
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.

------
davidwilson
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.

~~~
savemylife
I actually have the opposite of that- hypothyroidism.

------
michael_dorfman
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
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
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.)

------
rsheridan6
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.

------
orblivion
"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.

------
m0shen
Have you had a colonoscopy?

~~~
savemylife
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
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.

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

------
deadmansshoes
<http://www.ehow.com/how_2247032_deal-hypochondria.html>

------
sutro
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.

------
amih
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
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
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.

~~~
amih
My personal journey started after I had a severe virus attacking my liver,
this was the third time in my life that I had a liver disease and I was really
ill, I was extremely tired and weak for a month at least with a very slow
recovery after that. I had hepatitis (I think it was A) at age 7,
mononucleosis at age 21 and anonymous hepatitis at age 35. I am almost 40 now
and don't want to be sick again when I'm 49...

I read a lot about raw food on the internet and tried it myself. I used to eat
the SAD (Standard American Diet) even though I was born, grew up and still
live in Israel.

4 years ago I switched to a vegan diet and a year and a half ago I started on
a raw vegan diet.

The best diet for me personally is 811rv, this does not mean it is the right
diet for everyone, but you should at least try it before dismissing it as
rubbish. It is not a quick fix, it takes a lot of effort, mainly in the social
pressure from close friends, family and the society in general. this idea is
so alien that everyone will be against it. Think for yourself and research the
subject. It can't hurt you to eat healthier, right?

An apple a day keeps the doctor away - its just not true! You need to make the
apple the main course and eat many apples during the day.

Here are some pointers regarding nutrition:

nutridiary.com (free journal where you can log what you eat and it calculates
the nutritional value of the food)

juicefeasting.com
[http://juicefeasting.com/JuiceFeastingSpectrumIntro/Whatisth...](http://juicefeasting.com/JuiceFeastingSpectrumIntro/WhatistheSpectrumofDiet/tabid/348/Default.aspx)

<http://www.google.co.il/search?q=raw+fat+or+fruit>

<http://www.google.co.il/search?q=811rv>

~~~
eru
Interesting.

I find it easy to accept that your diet works--especially that it works for
you. Just the notion that it works for the reasons outlined, seems outlandish
to me. (But I do not have enough information either way.)

