8 ms·

Save My Life: an update (Celiac biopsy negative)

74 points by savemylife 16y ago

jeb 16y ago
Did you test for sleeping sickness: http://en.wikipedia.org/wiki/African_trypanosomiasis http://en.wikipedia.org/wiki/African_trypanosomiasis? Western doctors rarely check for African diseases.
- carbocation 16y ago
  Since the natural history of people with sleeping sickness is to die within four months to one year of onset of CNS symptoms, this seems unlikely.
starkfist 16y ago
I had the same symptoms as you about 5 years ago, and it was from having a poor diet and an anxiety disorder (that i did not want to admit I had).
- liedra 16y ago
  Hey good on you for realising this, anxiety issues can be very difficult to admit to. I hope everything is good for you now :)
- kmano8 16y ago
  I also had some similar symptoms 2 winters ago. Turned out to be anxiety, stress, mediocre diet, and a bit of hypochondria. What finally got me out of the rut was taking a trip to San Diego, spending time with friends away from my commute in the cold/dark hours, and realizing that maybe it was all in my head. It was difficult for me to accept that I could be psychologically messing with myself, but this was ultimately the problem.
  - grandalf 16y ago
    Congrats for realizing that those sorts of "minor" things can have a significant impact. I think that this guy has something similar, which is why I suggested he go to Costa Rica in the last HN story.
    - kmano8 16y ago
      Thanks. It all started in some October when I had some sort of bad reaction to something (maybe food) that caused a massive headache/vomiting all day for me. I got pretty worried about the cause. The headaches nagged everyday on through winter and into March (when I finally went to California). I went to specialist after specialist.. had blood tests, MRIs, etc. The actual headaches were real and not just in my head, as it were -- the search for something that wasn't there was really what brought me down. And ps- symptom checking online is the worst thing I did to myself (can't stress this enough).
      - grandalf 16y ago
        Symptom checking online is a huge mistake, I agree. It's fascinating to think about the role of an "official, correct diagnosis" into the psychological aspect of the suffering. The most uncomfortable suggestions are those that are accompanied by not reassuring stamp of authority. What, go to Costa Rica and eat fresh fruit and swim and learn to surf? That's crazy, what I need is a pill... etc. It's not just health but the experience of feeling/being healthy/unhealthy that is profoundly important. It's rather humbling how complex the human body (below and above the neck)!
- 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 and abroad), tried every kind of drug, and spent many months in psychotherapy. I feel like I really did investigate that angle thoroughly, and it's not the problem. I'm pretty confident in saying that it's not in my head.
  - Alex3917 16y ago
    Have you tried smoking high-CBD cannabis? If you have both muscle problems and brain fog, then it's possible that the brain fog is coming from the CRP and other stuff that's getting released as your muscles break down. CBD is non-psychoactive and doesn't even act in the brain, it just attaches to receptor sites on your muscles and works as an anti-inflammatory. It won't fix the root problem, but I'd recommend trying it (in moderation). High-CBD cannabis pretty rare, but they do sell it at Harborside in Oakland. This podcast explains the science much better than I can: http://matrixmasters.net/archive/Various/218-Little-TellsCannabisTruth.mp3 http://matrixmasters.net/archive/Various/218-Little-TellsCan...
    - carbocation 16y ago
      > it's possible that the brain fog is coming from the CRP and other stuff that's getting released as your muscles break down CRP is not released by muscle breakdown. It is a predominantly liver-produced acute-phase reactant that is an inflammatory marker. Myoglobin, on the other hand, is released by muscle breakdown, but this is only appreciably released in severe circumstances such as a crush injury. The major harm of myoglobin is to the kidneys, not the brain, and I'm quite certain that CBD does not help this. >CBD is non-psychoactive and doesn't even act in the brain CBD acts in the brain.
      - Alex3917 16y ago
        Thanks for correcting the science. My more general point though was that chronic low-level inflammation causes a large percentage of depression / brain fog type things, and CBD can help with this: http://www.google.com/search?sourceid=chrome&ie=UTF-8&q=inflammation+depression http://www.google.com/search?sourceid=chrome&ie=UTF-8&#3... And depression/anxiety causes inflammation too, so you really have to break the feedback cycle.
jerf 16y ago
As said in the previous writeups, the only really conclusive test is "Don't eat wheat for 3 weeks, then pig out for a meal. You'll know a few hours after that." This isn't just experience speaking (though it is, my father was at best marginal according to the biopsy but it's definitely celiac based on this test), but also the best current medical research. Biopsies can have problems where they hit a normal stretch of intestine, even though large chunks of it are affected. Quite a bit of research remains focused on just the best way to diagnose Celiac, which is usually not the hard part of a disease, at least after several years of research. :) If that doesn't definitively make you sick on the pig-out day, it isn't Celiac. Small improvements during those three weeks are modestly positive signs but not really definitive. (In my experience they were mostly within "placebo" range, but how sick I got after my last pizza was not.)
- 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 thorough an exploration as she would have liked (though this was mostly the colonoscopy, not the endo). In fact I recall screaming a few choice words at her during the procedure because I was in such pain. She said that I should ask for full anesthesia rather than just twilight if I ever repeat these tests. I'm prepared to stick to this diet for 3-4 months or so before giving up.
  - jerf 16y ago
    "I'm prepared to stick to this diet for 3-4 months or so before giving up." The goal here is to determine if you have the disease, not to live as if you do. If you have the disease, then proceed to the part where you live as if you have it. :) This is especially true if it turns out this isn't it! You really only want to pursue one avenue at a time so you don't get interference, and you don't want to tie yourself up for 3 extra months for no gain.
    - savemylife 16y ago
carbocation 16y ago
Tissue biopsy is the gold standard for Celiac diagnosis; the blood tests are used to help determine who needs a biopsy (although it is true that some people think the biopsy is unnecessary). A normal biopsy procedure actually involves multiple biopsy specimens from nearby parts of the duodenum to be taken, so if they followed protocol it is unlikely that they missed the more-or-less pathognomonic signs of Celiac. That said, if you do have Celiac and the biopsy was wrong (it happens), then your symptoms should actually take quite awhile to resolve. This is because part of the symptomatology comes from the derangement of the duodenum (villous atrophy, etc). Only by allowing it to heal over weeks to months would you expect to see real improvement. I doubt that you have Celiac, given the biopsy results, but there is truly no harm in trying the diet. Also, the genetic test is definitely less sensitive and less specific than the biopsy; I'm not sure why your doctor recommended this afterwards.
- 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 rule out Celiac then and there, but it was "strongly positive".
  - carbocation 16y ago
    This is not how the diagnostic chain for Celiac is designed to work. Optimally, you would proceed like so: (a) patient has symptoms consistent with Celiac; (b) patient gets tested for either antibodies (e.g., antiendomysial IgA) or genetics; (c) if 'b' is positive (or sometimes if it is negative and clinical suspicion is strong) then biopsy is performed. Since the biopsy is both more sensitive and specific than the genetic test, one should not side with the genetic test over the biopsy in most circumstances. The genetic test cannot rule out Celiac. Why? The genetic test looks for specific common variants. It cannot discover anything that is not already in the database; therefore, it cannot rule out Celiac for you - it can only make it more likely or less so. (As an aside, this is why treating 23andme as a medical tool can be dangerous. Let's say you have common genetic variants protective for breast cancer -- but, lo and behold, you also have a rare variant previously undescribed in the literature and not captured by the 23andme chip. You actually have a high risk of cancer, but would think just the opposite based on the common variants examined by 23andme. Sorry for the lengthy aside.) Let's say that Celiac is 100% determined by your genetic variation. It's still possible that there are common variants that cause Celiac, and rare ones. The tests that we have right now only look for relatively common variants, which is why they have varying accuracy in people of different genetic backgrounds but generally are positive in 95% of people with biopsy-proven disease... which gets me back to my main point, which is that you have a biopsy; the genetic test is nothing more than a waste of your money from a biological standpoint. From a peace-of-mind standpoint, I can appreciate why you want this.
DotSauce 16y ago
Have you tried prayer, friend? I'll get you started.
- nroach 16y ago
  Why would this get modded down in light of the topic? People are suggesting vitamins, sleeping sickness, and all other manner of diagnoses and potential cures. I don't see why prayer should any less valid as a topic of discussion. Besides, what's Celiac disease have to do with technology, startups, or Y-Combinator in general? The whole thing seems far off topic to me. My 2c: I certainly wouldn't avocate relying on prayer to the exclusion of other remedies, but as part of the big picture, down-modding seems a bit extreme.
  - grandalf 16y ago
    There is a bit of a bias toward hard-science oriented solutions... I suggested a 6 month tropical vacation in the last thread and it was modded down. I'm an atheist but surely prayer (in its highest form) can be equivalent to mindfulness meditation ?
  - philwelch 16y ago
    Prayer doesn't work. You'd get modded down just as much around here for suggesting homeopathy or something. Plus, suggesting prayer (especially with something like "I'll get you started") is a popular opener to the always unpopular and antisocial practice of trying to convert other people to your religion, which is doubly a dick move when you target vulnerable people, like the chronically ill.
mey 16y ago
http://distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/ http://distractible.org/2010/07/14/a-letter-to-patients-with...
- carbocation 16y ago
  This is an excellent letter written by a doctor who clearly cares and who offers several pieces of actionable advice. Thanks for sharing.
Alex3917 16y ago
For what it's worth, I just started taking the Core 5 vitamin set from mercola.com and it seems to really work. I sort of ordered it in a moment of weakness, figuring that it was probably a scam but for 100 bucks it was worth trying for 30 days. I'm only a week in, but I really feel better than I've felt in a long, long time. Which is weird because I was already taking a multivitamin, Omega-3, and 800IU of vitamin D, but I wasn't getting nearly the same effect. Even if it's just a placebo, at $100 bucks a month I'm happy to pay for it if the improvement is sustained. Anyway I have no idea if there is actually just meth in these and that's why they make me feel so good, or what the longterm safety/efficacy is, but I just wanted to recommend it as an option. It could turn out that you're just deficient in some random thing, and just paying a hundred bucks and taking a crapload of everything for 30 days is a lot cheaper than getting tested for every possible nutrition deficiency, and you'll know within a couple days whether it's working.
- patrickgzill 16y ago
  I have no experience with the mercola.com vitamins; however, I can attest to positive experiences with the (cheaper) vitamin/mineral combination found in the "Alive!" vitamins: http://www.amazon.com/gp/product/B0009F3RO2/ http://www.amazon.com/gp/product/B0009F3RO2/ . Also cheaper (60 day supply for under $30). I, my wife, and my mother-in-law have all had good results.
metamemetics 16y ago
Why would you need to pay for a test? Just stop eating wheat and eat corn tortillas, rice, buckwheat, etc. 1) Have you used a nutrition calculator for 1 week to see if your typical diet is malnourished? 2) Have you tried boosting niacin intake for peripheral tingling? 3) Have you tried increasing intake of antioxidant and antiinflammatory foods such as dark chocolate, turmeric, blueberries, and fresh fish? 4) Do you wake up at the same time every morning? 5) How many grams of protein do you consume a day and what is your body weight? 6) What are the different antidepressant or stimulant medications\supplements you have tried for fatigue?
mcantor 16y ago
I have some friends who are very knowledgeable about the Cleveland medical community; I am told that Dr. Tanya Edwards is someone you should seek out, at the Cleveland Clinic. You might have to wait a bit for an appointment, but she's the foremost expert on holistic medicine in the region. Good luck!
- savemylife 16y ago
  That's a good local reference to have, thanks!
skyjumper 16y ago
Another diet to experiment with is the No Starch Diet. There's a lot of anecdotal evidence suggesting that starches somehow trigger an autoimmune reaction in some people leading to Ankylosing Spondylitis and possibly others like Irritable Bowel Disease. It's not an easy diet to follow, but the food test is simple - red iodine turns blackish blue in contact with starch.

74 points by savemylife 16y ago

jeb 16y ago

Did you test for sleeping sickness: http://en.wikipedia.org/wiki/African_trypanosomiasis http://en.wikipedia.org/wiki/African_trypanosomiasis? Western doctors rarely check for African diseases.

carbocation 16y ago
Since the natural history of people with sleeping sickness is to die within four months to one year of onset of CNS symptoms, this seems unlikely.

starkfist 16y ago

I had the same symptoms as you about 5 years ago, and it was from having a poor diet and an anxiety disorder (that i did not want to admit I had).

liedra 16y ago
Hey good on you for realising this, anxiety issues can be very difficult to admit to. I hope everything is good for you now :)
kmano8 16y ago
I also had some similar symptoms 2 winters ago. Turned out to be anxiety, stress, mediocre diet, and a bit of hypochondria. What finally got me out of the rut was taking a trip to San Diego, spending time with friends away from my commute in the cold/dark hours, and realizing that maybe it was all in my head. It was difficult for me to accept that I could be psychologically messing with myself, but this was ultimately the problem.
- grandalf 16y ago
  Congrats for realizing that those sorts of "minor" things can have a significant impact. I think that this guy has something similar, which is why I suggested he go to Costa Rica in the last HN story.
  - kmano8 16y ago
    Thanks. It all started in some October when I had some sort of bad reaction to something (maybe food) that caused a massive headache/vomiting all day for me. I got pretty worried about the cause. The headaches nagged everyday on through winter and into March (when I finally went to California). I went to specialist after specialist.. had blood tests, MRIs, etc. The actual headaches were real and not just in my head, as it were -- the search for something that wasn't there was really what brought me down. And ps- symptom checking online is the worst thing I did to myself (can't stress this enough).
    - grandalf 16y ago
      Symptom checking online is a huge mistake, I agree. It's fascinating to think about the role of an "official, correct diagnosis" into the psychological aspect of the suffering. The most uncomfortable suggestions are those that are accompanied by not reassuring stamp of authority. What, go to Costa Rica and eat fresh fruit and swim and learn to surf? That's crazy, what I need is a pill... etc. It's not just health but the experience of feeling/being healthy/unhealthy that is profoundly important. It's rather humbling how complex the human body (below and above the neck)!
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 and abroad), tried every kind of drug, and spent many months in psychotherapy. I feel like I really did investigate that angle thoroughly, and it's not the problem. I'm pretty confident in saying that it's not in my head.
- Alex3917 16y ago
  Have you tried smoking high-CBD cannabis? If you have both muscle problems and brain fog, then it's possible that the brain fog is coming from the CRP and other stuff that's getting released as your muscles break down. CBD is non-psychoactive and doesn't even act in the brain, it just attaches to receptor sites on your muscles and works as an anti-inflammatory. It won't fix the root problem, but I'd recommend trying it (in moderation). High-CBD cannabis pretty rare, but they do sell it at Harborside in Oakland. This podcast explains the science much better than I can: http://matrixmasters.net/archive/Various/218-Little-TellsCannabisTruth.mp3 http://matrixmasters.net/archive/Various/218-Little-TellsCan...
  - carbocation 16y ago
    > it's possible that the brain fog is coming from the CRP and other stuff that's getting released as your muscles break down CRP is not released by muscle breakdown. It is a predominantly liver-produced acute-phase reactant that is an inflammatory marker. Myoglobin, on the other hand, is released by muscle breakdown, but this is only appreciably released in severe circumstances such as a crush injury. The major harm of myoglobin is to the kidneys, not the brain, and I'm quite certain that CBD does not help this. >CBD is non-psychoactive and doesn't even act in the brain CBD acts in the brain.
    - Alex3917 16y ago
      Thanks for correcting the science. My more general point though was that chronic low-level inflammation causes a large percentage of depression / brain fog type things, and CBD can help with this: http://www.google.com/search?sourceid=chrome&ie=UTF-8&q=inflammation+depression http://www.google.com/search?sourceid=chrome&ie=UTF-8&#3... And depression/anxiety causes inflammation too, so you really have to break the feedback cycle.

jerf 16y ago

As said in the previous writeups, the only really conclusive test is "Don't eat wheat for 3 weeks, then pig out for a meal. You'll know a few hours after that." This isn't just experience speaking (though it is, my father was at best marginal according to the biopsy but it's definitely celiac based on this test), but also the best current medical research. Biopsies can have problems where they hit a normal stretch of intestine, even though large chunks of it are affected. Quite a bit of research remains focused on just the best way to diagnose Celiac, which is usually not the hard part of a disease, at least after several years of research. :) If that doesn't definitively make you sick on the pig-out day, it isn't Celiac. Small improvements during those three weeks are modestly positive signs but not really definitive. (In my experience they were mostly within "placebo" range, but how sick I got after my last pizza was not.)

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 thorough an exploration as she would have liked (though this was mostly the colonoscopy, not the endo). In fact I recall screaming a few choice words at her during the procedure because I was in such pain. She said that I should ask for full anesthesia rather than just twilight if I ever repeat these tests. I'm prepared to stick to this diet for 3-4 months or so before giving up.
- jerf 16y ago
  "I'm prepared to stick to this diet for 3-4 months or so before giving up." The goal here is to determine if you have the disease, not to live as if you do. If you have the disease, then proceed to the part where you live as if you have it. :) This is especially true if it turns out this isn't it! You really only want to pursue one avenue at a time so you don't get interference, and you don't want to tie yourself up for 3 extra months for no gain.
  - savemylife 16y ago

carbocation 16y ago

Tissue biopsy is the gold standard for Celiac diagnosis; the blood tests are used to help determine who needs a biopsy (although it is true that some people think the biopsy is unnecessary). A normal biopsy procedure actually involves multiple biopsy specimens from nearby parts of the duodenum to be taken, so if they followed protocol it is unlikely that they missed the more-or-less pathognomonic signs of Celiac. That said, if you do have Celiac and the biopsy was wrong (it happens), then your symptoms should actually take quite awhile to resolve. This is because part of the symptomatology comes from the derangement of the duodenum (villous atrophy, etc). Only by allowing it to heal over weeks to months would you expect to see real improvement. I doubt that you have Celiac, given the biopsy results, but there is truly no harm in trying the diet. Also, the genetic test is definitely less sensitive and less specific than the biopsy; I'm not sure why your doctor recommended this afterwards.

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 rule out Celiac then and there, but it was "strongly positive".
- carbocation 16y ago
  This is not how the diagnostic chain for Celiac is designed to work. Optimally, you would proceed like so: (a) patient has symptoms consistent with Celiac; (b) patient gets tested for either antibodies (e.g., antiendomysial IgA) or genetics; (c) if 'b' is positive (or sometimes if it is negative and clinical suspicion is strong) then biopsy is performed. Since the biopsy is both more sensitive and specific than the genetic test, one should not side with the genetic test over the biopsy in most circumstances. The genetic test cannot rule out Celiac. Why? The genetic test looks for specific common variants. It cannot discover anything that is not already in the database; therefore, it cannot rule out Celiac for you - it can only make it more likely or less so. (As an aside, this is why treating 23andme as a medical tool can be dangerous. Let's say you have common genetic variants protective for breast cancer -- but, lo and behold, you also have a rare variant previously undescribed in the literature and not captured by the 23andme chip. You actually have a high risk of cancer, but would think just the opposite based on the common variants examined by 23andme. Sorry for the lengthy aside.) Let's say that Celiac is 100% determined by your genetic variation. It's still possible that there are common variants that cause Celiac, and rare ones. The tests that we have right now only look for relatively common variants, which is why they have varying accuracy in people of different genetic backgrounds but generally are positive in 95% of people with biopsy-proven disease... which gets me back to my main point, which is that you have a biopsy; the genetic test is nothing more than a waste of your money from a biological standpoint. From a peace-of-mind standpoint, I can appreciate why you want this.

DotSauce 16y ago

Have you tried prayer, friend? I'll get you started.

nroach 16y ago
Why would this get modded down in light of the topic? People are suggesting vitamins, sleeping sickness, and all other manner of diagnoses and potential cures. I don't see why prayer should any less valid as a topic of discussion. Besides, what's Celiac disease have to do with technology, startups, or Y-Combinator in general? The whole thing seems far off topic to me. My 2c: I certainly wouldn't avocate relying on prayer to the exclusion of other remedies, but as part of the big picture, down-modding seems a bit extreme.
- grandalf 16y ago
  There is a bit of a bias toward hard-science oriented solutions... I suggested a 6 month tropical vacation in the last thread and it was modded down. I'm an atheist but surely prayer (in its highest form) can be equivalent to mindfulness meditation ?
- philwelch 16y ago
  Prayer doesn't work. You'd get modded down just as much around here for suggesting homeopathy or something. Plus, suggesting prayer (especially with something like "I'll get you started") is a popular opener to the always unpopular and antisocial practice of trying to convert other people to your religion, which is doubly a dick move when you target vulnerable people, like the chronically ill.

mey 16y ago

http://distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/ http://distractible.org/2010/07/14/a-letter-to-patients-with...

carbocation 16y ago
This is an excellent letter written by a doctor who clearly cares and who offers several pieces of actionable advice. Thanks for sharing.

Alex3917 16y ago

For what it's worth, I just started taking the Core 5 vitamin set from mercola.com and it seems to really work. I sort of ordered it in a moment of weakness, figuring that it was probably a scam but for 100 bucks it was worth trying for 30 days. I'm only a week in, but I really feel better than I've felt in a long, long time. Which is weird because I was already taking a multivitamin, Omega-3, and 800IU of vitamin D, but I wasn't getting nearly the same effect. Even if it's just a placebo, at $100 bucks a month I'm happy to pay for it if the improvement is sustained. Anyway I have no idea if there is actually just meth in these and that's why they make me feel so good, or what the longterm safety/efficacy is, but I just wanted to recommend it as an option. It could turn out that you're just deficient in some random thing, and just paying a hundred bucks and taking a crapload of everything for 30 days is a lot cheaper than getting tested for every possible nutrition deficiency, and you'll know within a couple days whether it's working.

patrickgzill 16y ago
I have no experience with the mercola.com vitamins; however, I can attest to positive experiences with the (cheaper) vitamin/mineral combination found in the "Alive!" vitamins: http://www.amazon.com/gp/product/B0009F3RO2/ http://www.amazon.com/gp/product/B0009F3RO2/ . Also cheaper (60 day supply for under $30). I, my wife, and my mother-in-law have all had good results.

metamemetics 16y ago

Why would you need to pay for a test? Just stop eating wheat and eat corn tortillas, rice, buckwheat, etc. 1) Have you used a nutrition calculator for 1 week to see if your typical diet is malnourished? 2) Have you tried boosting niacin intake for peripheral tingling? 3) Have you tried increasing intake of antioxidant and antiinflammatory foods such as dark chocolate, turmeric, blueberries, and fresh fish? 4) Do you wake up at the same time every morning? 5) How many grams of protein do you consume a day and what is your body weight? 6) What are the different antidepressant or stimulant medications\supplements you have tried for fatigue?

mcantor 16y ago

I have some friends who are very knowledgeable about the Cleveland medical community; I am told that Dr. Tanya Edwards is someone you should seek out, at the Cleveland Clinic. You might have to wait a bit for an appointment, but she's the foremost expert on holistic medicine in the region. Good luck!

savemylife 16y ago
That's a good local reference to have, thanks!

skyjumper 16y ago

Another diet to experiment with is the No Starch Diet. There's a lot of anecdotal evidence suggesting that starches somehow trigger an autoimmune reaction in some people leading to Ankylosing Spondylitis and possibly others like Irritable Bowel Disease. It's not an easy diet to follow, but the food test is simple - red iodine turns blackish blue in contact with starch.