I put 75% probability on you having celiac disease. It explains the headaches, iron deficiency anemia, peripheral neuropathy, swelling, and burning sensation in the skin (all reported in this thread). If it is not celiac disease, it is something that has not been mentioned in this thread; all of the other hypotheses given thus far are obviously implausible.
There are relevant blood tests, although they can produce false negatives. I recommend trying a gluten-free diet for two weeks, and seeing if your symptoms subside. Vitamins are also a good idea to mitigate some of the damage and help you recover.
I was thinking I’d just go to the doctor and ask to be tested for celiac. Since apparently the tests don’t work if you haven’t been eating gluten lately. Will that suffice?
Help me out with the odds: if you risk $100 how much would I be risking?
Apologies, but Molybdenumblue bet against half my limit threshold before you, which makes the combination of these two above my limit. Also, in a comment before that I specified a 10-to-25 ratio (to make myself favor the bet, rather than be indifferent). I can bet 20 against 50 under the same terms I gave her; is that okay?
I have an appointment tomorrow (although I don’t know if they will test me that very day or not; it may not be sufficiently routine). Molybdenumblue offered to withdraw, and I’m not very pleased with moving the goalposts from the initial odds ratio you’d offered (I’d’ve taken my $20 against your $50 if that were your original offer, but changing it later makes a social negotiation module in my brain complain). Do you want to bet my $30 versus your $90 or not?
Suggested parameters: I will get tested for celiac. If the test comes back positive, you win; if it comes back negative, I win; if for some reason the doctor thinks I can’t reasonably have celiac and won’t test me for it, the bet’s off; if I turn out to have some non-celiac condition like an allergy that nevertheless means I have to avoid gluten/wheat, bet is off; if the doctor wants to pursue other possible explanations for my headaches first and one of them turns out to be correct, I win; if the test comes back inconclusive and the doctor tells me to go without gluten for a period of time such that I’m willing to try it, then the bet turns out according to the results of the dietary test; if the doctor says I need to try going without gluten for six months or something really intrusive like that without compelling evidence that I have celiac, I’m not going to do that, and the bet is off. If none of these conditions obtains by New Year’s, bet is off.
parameters: I will get tested for celiac. If the test comes back positive, you win; if it comes back negative, I win; if for some reason the doctor thinks I can’t reasonably have celiac and won’t test me for it, the bet’s off; if the doctor wants to pursue other possible explanations for my headaches first and one of them turns out to be correct, I win; if the test comes back inconclusive and the doctor tells me to go without gluten for a period of time such that I’m willing to try it, then the bet turns out according to the results of the dietary test; if the doctor says I need to try going without gluten for six months or something really intrusive like that without compelling evidence that I have celiac, I’m not going to do that, and the bet is off. If none of these conditions obtains by New Year’s, bet is off.
(I edited in another clause about the ambiguous case where I have, like, a wheat allergy or something else that is similar to but not identical to celiac; I can revise that if you want.)
(I edited in another clause about the ambiguous case where I have, like, a wheat allergy or something else that is similar to but not identical to celiac; I can revise that if you want.)
Accepted. (I think this case coming up is very improbable.)
Sprue screening came back in the mail today. Negative. Do you want to see a scan of it, or just paypal me the ninety bucks? alicorn24@gmail.com is the paypal address :)
Payment sent, with my condolences, as this means you still don’t have a diagnosis and have to keep being unhealthy and miserable.
At this point, I would:
Crank the level of detail of your diet and headache logging all the way up. Note times, note serving sizes, and try to get everything, including snacks and water.
Get the tools for testing blood pressure and blood sugar, to see if these are different whie you have a headache than while at baseline. (These tests are worth considerably less if they are performed in a doctor’s office.)
Look up the false negative rate of the particular test you had and compute a posterior probability (starting from my 75% bet and updating down). If it’s high enough to justify (or if there’s nothing else left to try), go on a low-gluten diet for a week.
Test CronoDAS’s Ibuprofen-rebound theory with a longer detoxing period
Try changing many things at once, by adopting an entirely new set of staple foods for 2 weeks
But most of all, just remember: sooner or later you will figure this out, and when you do, your life and subjective well-being will take a dramatic upswing.
She thinks it was muscle tension due to bad posture. Getting a lovely thorough massage to my neck chases away some headaches temporarily, and when I feel about to have a headache I seem to be able to keep them at bay sometimes by, not exactly sitting up straight since that would only make my back hurt, but by keeping my head back against the wall I sit near instead of leaning it forward. So this is either a partial explanation for a complicated phenomenon or a placebo effect for something else.
Wow, same for me, with hurt back, and all. I think we might have the same problem. Let’s figure out if we really do. I don’t have a solution unfortunately, but here is a hint that might be relevant. It took me years to understand that bowing my head deep causes me a headache. To start a bad headache that might last for hours it is enough to look at my own navel for a few seconds. I picked up some slightly unusual habits since I realized this. For example, I pick up dropped objects without looking down, without any conscious effort. If I accidentally bow my head anyway, sometimes it helps if I immediately raise my head high to counteract the first movement. It is metaphor not an explanation, but it feels like blood is rushing to a part of my brain where it is not welcome, and the only way to avoid the headache is to quickly send it back to its proper place.
Another clue: for really bad headaches, it temporarily helps if I push my eyeballs very very hard. Is this the same for you?
The offer’s open to anyone, as long as the sum of all bets made so far is less than my maximum.
To make the numbers round, and give myself a little expected-profit margin, I’ll put up $25 against each $10 someone else puts up. Bets settle via PayPal, in my favor if a diagnosis of celiac disease is reached, in your favor if a different diagnosis is made and confirmed, or if no diagnosis has been made by Jan 1.
It wouldn’t hurt to spell out the steps Alicorn should take to rule in or out a diagnosis of celiac, since the blood test isn’t completely reliable. It’s my understanding that following a gluten free diet can be challenging at first, one needs to carefully read labels. Salad dressings, sauces, etc. often contain gluten. A friend of mine bought a separate toaster for her daughter who has celiac. I suggest specifying a set time period that he should follow a gluten free diet while keeping a diary listing all foods eaten, as well as any symptoms.
I can understand your reluctance. May I suggest the following? How about if you get the blood test? If it’s positive, then you’ll know the problem and can fix your head. If it’s negative, you really should work with a doctor and see if he can figure out what it is. Ask him to check out some of the other things suggested. If none of them solve your headaches, then you can try the gluten free diet—to be sure.
As far as the bet goes- what conditions are set are between you and Jim, I just think they should be clearly established, to avoid any misunderstandings. I strongly suspect that he’s more interested in helping you figure out the cause of your headaches then in winning a bet.
I know people with celiac who follow the gluten free diet. My impression is that it takes some getting used to, but it isn’t that miserable or complicated, once you get used to it. Nowadays supermarkets like Whole Foods have gluten free sections where you can buy special mixes, etc. which helps.
My sprue bloodwork included other things, including vitamin D, which I have been taking for a year and a half and still showed a deficiency in. Dunno how that works.
A few years ago I was tested for Vitamin D deficiency- probably for the first time. I came out at the low end of the normal range- which is probably normal in the Boston area, where I live. We don’t get enough sunlight here for much of the year. My doctor prescribed a megadose of 10,000 units a day for 2 or 3 months and then retested. My levels were o.k. then, so she told me to take 1,000 units a day, which I do, in addition to the 400 units in my multivitamin.
My point is, maybe you need a higher dose- in addition to looking into the possibility that your really do have celiac disease, despite the negative test.
My sprue bloodwork included other things, including vitamin D, which I have been taking for a year and a half and still showed a deficiency in. Dunno how that works.
How much have you been taking? It might not be enough. And did you ever find out what the false-negative rate was on the celiac test? Vitamin D malabsorption is listed on the wiki page as another symptom.
2000 I.U. a day, which is what the doctor’s note on my bloodwork report suggested (she must not have looked at the list of supplements I take, or something). I don’t know the false negative rate but I can ask.
2000 IU is not very much. I suggest starting at 1000 iu per 25 pounds of body weight for light skinned individuals, and then testing and adjusting accordingly. (say, 1000 iu for every 10 ng/ml you want to increase)
I put 75% probability on you having celiac disease. It explains the headaches, iron deficiency anemia, peripheral neuropathy, swelling, and burning sensation in the skin (all reported in this thread). If it is not celiac disease, it is something that has not been mentioned in this thread; all of the other hypotheses given thus far are obviously implausible.
There are relevant blood tests, although they can produce false negatives. I recommend trying a gluten-free diet for two weeks, and seeing if your symptoms subside. Vitamins are also a good idea to mitigate some of the damage and help you recover.
Since you have supplied a probability, want to bet?
Okay. I’ll accept any bet that gives me better than 1:3 odds, up to a maximum risk of $100.
Please don’t set up a perverse incentive to misdiagnose yourself, though.
I was thinking I’d just go to the doctor and ask to be tested for celiac. Since apparently the tests don’t work if you haven’t been eating gluten lately. Will that suffice?
Help me out with the odds: if you risk $100 how much would I be risking?
You’d be risking an amount of your choosing up to a maximum of $33 1⁄3.
I’ll take a round thirty against your ninety, is that okay?
Apologies, but Molybdenumblue bet against half my limit threshold before you, which makes the combination of these two above my limit. Also, in a comment before that I specified a 10-to-25 ratio (to make myself favor the bet, rather than be indifferent). I can bet 20 against 50 under the same terms I gave her; is that okay?
I have an appointment tomorrow (although I don’t know if they will test me that very day or not; it may not be sufficiently routine). Molybdenumblue offered to withdraw, and I’m not very pleased with moving the goalposts from the initial odds ratio you’d offered (I’d’ve taken my $20 against your $50 if that were your original offer, but changing it later makes a social negotiation module in my brain complain). Do you want to bet my $30 versus your $90 or not?
Suggested parameters: I will get tested for celiac. If the test comes back positive, you win; if it comes back negative, I win; if for some reason the doctor thinks I can’t reasonably have celiac and won’t test me for it, the bet’s off; if I turn out to have some non-celiac condition like an allergy that nevertheless means I have to avoid gluten/wheat, bet is off; if the doctor wants to pursue other possible explanations for my headaches first and one of them turns out to be correct, I win; if the test comes back inconclusive and the doctor tells me to go without gluten for a period of time such that I’m willing to try it, then the bet turns out according to the results of the dietary test; if the doctor says I need to try going without gluten for six months or something really intrusive like that without compelling evidence that I have celiac, I’m not going to do that, and the bet is off. If none of these conditions obtains by New Year’s, bet is off.
Accepted.
(I edited in another clause about the ambiguous case where I have, like, a wheat allergy or something else that is similar to but not identical to celiac; I can revise that if you want.)
Accepted. (I think this case coming up is very improbable.)
Sprue screening came back in the mail today. Negative. Do you want to see a scan of it, or just paypal me the ninety bucks? alicorn24@gmail.com is the paypal address :)
bread bread bread yay bread bread bread yay
Payment sent, with my condolences, as this means you still don’t have a diagnosis and have to keep being unhealthy and miserable.
At this point, I would:
Crank the level of detail of your diet and headache logging all the way up. Note times, note serving sizes, and try to get everything, including snacks and water.
Get the tools for testing blood pressure and blood sugar, to see if these are different whie you have a headache than while at baseline. (These tests are worth considerably less if they are performed in a doctor’s office.)
Look up the false negative rate of the particular test you had and compute a posterior probability (starting from my 75% bet and updating down). If it’s high enough to justify (or if there’s nothing else left to try), go on a low-gluten diet for a week.
Test CronoDAS’s Ibuprofen-rebound theory with a longer detoxing period
Try changing many things at once, by adopting an entirely new set of staple foods for 2 weeks
But most of all, just remember: sooner or later you will figure this out, and when you do, your life and subjective well-being will take a dramatic upswing.
When you saw the doctor did ey have any other theories about your various mysterious maladies such as the headaches?
She thinks it was muscle tension due to bad posture. Getting a lovely thorough massage to my neck chases away some headaches temporarily, and when I feel about to have a headache I seem to be able to keep them at bay sometimes by, not exactly sitting up straight since that would only make my back hurt, but by keeping my head back against the wall I sit near instead of leaning it forward. So this is either a partial explanation for a complicated phenomenon or a placebo effect for something else.
Wow, same for me, with hurt back, and all. I think we might have the same problem. Let’s figure out if we really do. I don’t have a solution unfortunately, but here is a hint that might be relevant. It took me years to understand that bowing my head deep causes me a headache. To start a bad headache that might last for hours it is enough to look at my own navel for a few seconds. I picked up some slightly unusual habits since I realized this. For example, I pick up dropped objects without looking down, without any conscious effort. If I accidentally bow my head anyway, sometimes it helps if I immediately raise my head high to counteract the first movement. It is metaphor not an explanation, but it feels like blood is rushing to a part of my brain where it is not welcome, and the only way to avoid the headache is to quickly send it back to its proper place.
Another clue: for really bad headaches, it temporarily helps if I push my eyeballs very very hard. Is this the same for you?
Haven’t tried pushing on my eyeballs. I will next time I get a headache and report back.
Edit: No effect whatever.
Any news?
Not yet. I should be getting it soon, supposedly.
If this is a problem I can withdraw.
Minimum (you’d hardly want to risk $100 for $1 on a 95% probability).
How does your odds relate to your probability?
Or how did Alicorns expectations of your odds relate to your probability?
Why did she ask that?
Is this offer only open to Alicorn?
The offer’s open to anyone, as long as the sum of all bets made so far is less than my maximum.
To make the numbers round, and give myself a little expected-profit margin, I’ll put up $25 against each $10 someone else puts up. Bets settle via PayPal, in my favor if a diagnosis of celiac disease is reached, in your favor if a different diagnosis is made and confirmed, or if no diagnosis has been made by Jan 1.
It wouldn’t hurt to spell out the steps Alicorn should take to rule in or out a diagnosis of celiac, since the blood test isn’t completely reliable. It’s my understanding that following a gluten free diet can be challenging at first, one needs to carefully read labels. Salad dressings, sauces, etc. often contain gluten. A friend of mine bought a separate toaster for her daughter who has celiac. I suggest specifying a set time period that he should follow a gluten free diet while keeping a diary listing all foods eaten, as well as any symptoms.
(she)
Thank you.
Hey, if the blood test says I don’t have celiac, I am not going to follow a miserable complicated diet for weeks just to win a bet.
I can understand your reluctance. May I suggest the following? How about if you get the blood test? If it’s positive, then you’ll know the problem and can fix your head. If it’s negative, you really should work with a doctor and see if he can figure out what it is. Ask him to check out some of the other things suggested. If none of them solve your headaches, then you can try the gluten free diet—to be sure.
As far as the bet goes- what conditions are set are between you and Jim, I just think they should be clearly established, to avoid any misunderstandings. I strongly suspect that he’s more interested in helping you figure out the cause of your headaches then in winning a bet.
I know people with celiac who follow the gluten free diet. My impression is that it takes some getting used to, but it isn’t that miserable or complicated, once you get used to it. Nowadays supermarkets like Whole Foods have gluten free sections where you can buy special mixes, etc. which helps.
If Alicorn has celiac, then her quality of life will improve if she avoids gluten. However, this might not prevent her headaches.
I guess it would be kind of a dick move to monopolize the bet, so I’ll put up $20.
Accepted. ($20 against $50, exact terms in this comment)
I suggest the Cyrex labs tests. Gluten sensitivity testing is tricky.
Also, if you are not already taking Vitamin D, I’ll bet you are deficient.
My sprue bloodwork included other things, including vitamin D, which I have been taking for a year and a half and still showed a deficiency in. Dunno how that works.
A few years ago I was tested for Vitamin D deficiency- probably for the first time. I came out at the low end of the normal range- which is probably normal in the Boston area, where I live. We don’t get enough sunlight here for much of the year. My doctor prescribed a megadose of 10,000 units a day for 2 or 3 months and then retested. My levels were o.k. then, so she told me to take 1,000 units a day, which I do, in addition to the 400 units in my multivitamin.
My point is, maybe you need a higher dose- in addition to looking into the possibility that your really do have celiac disease, despite the negative test.
How much have you been taking? It might not be enough. And did you ever find out what the false-negative rate was on the celiac test? Vitamin D malabsorption is listed on the wiki page as another symptom.
2000 I.U. a day, which is what the doctor’s note on my bloodwork report suggested (she must not have looked at the list of supplements I take, or something). I don’t know the false negative rate but I can ask.
2000 IU is not very much. I suggest starting at 1000 iu per 25 pounds of body weight for light skinned individuals, and then testing and adjusting accordingly. (say, 1000 iu for every 10 ng/ml you want to increase)
And starting from there I suggest adding MOAR D until your bloodwork puts you in the mid-high range. ;)