3 ms·

Since you're invoking the "best current medical research," can you cite the evidence that says that wheat-deprivation-followed-by-a-giant-wheat-meal is more sen

Since you're invoking the "best current medical research," can you cite the evidence that says that wheat-deprivation-followed-by-a-giant-wheat-meal is more sensitive and/or specific than duodenal biopsy for Celiac? Since you skip around this detail, what is the telltale sign that occurs a few hours after the meal? I ask because (1) I am inclined to doubt that this is true, but (2) the guidelines always lag the latest evidence, so if it is true then it wouldn't be in the guidelines anyways.

CapitalistCartr 16y ago
" . . . the telltale sign that occurs a few hours after the meal" I can answer this one. It ain't 'telltale signs'. It's miserable hell. Imagine eating some bad food. The effects are far from subtle.
- carbocation 16y ago
  Thanks. So that one could reproducibly identify this, can you be more specific? For example, is it diarrhea? Cramping pain? Other?
  - jvdh 16y ago
    Second hand evidence, but what I've heard is that you'll know pretty quickly whether you have a response or not. Cramping pain, nausea, diarrhea, feeling miserable, you name it. And this was just from eating a small treat, not even a full meal. So if you want to know for certain, follow the diet for some time, and then feast on gluten.
    - carbocation 16y ago
      Thanks. Hopefully jerf can provide some citations for the diagnostic utility of this. It doesn't sound promising, honestly.
  - joshkaufman 16y ago
    Here's what happens to me: when I eat gluten, I'm exhausted within a few hours, then for ~2 days after. I also have clear GI symptoms - bleeding, mucus, etc. (I've heard that exact symptoms vary, based on your personal level of gluten sensitivity - it's a spectrum.) When I eliminated gluten for 4 weeks, I felt much better - normal energy, no GI symptoms. Then I reintroduced a little - breaded ahi tuna on a salad for lunch. Within 2 hours, I was exhausted, and I was absolutely worthless for the next two days. My doctor did a Celiac blood test - it came back negative on 2 tests, and positive on the 3rd. I'm waiting on the results of a genetic profile, but my MDs said my self-experimentation is the clearest signal, and to stay gluten free regardless of what the tests indicate.
    - carbocation 16y ago
      Absolutely. This doesn't exactly sound like Celiac, but you're clearly having an adverse reaction to something you're eating, almost certainly in the wheat products that you're describing. At the end of the day for an individual, the diagnostic label is much less important than curing the disease, which it sounds like you're accomplishing via experimentation. Cheers.
    - nroach 16y ago
      Gluten intolerance /= Celiac disease. They're two separate problems but often confused because the latter incorporates the symptoms of the former. Whatever the final verdict winds up as, avoidance of wheat gluten is a preventative step common to both conditions.
jerf 16y ago
Best medical research is a bit coy on this front; they keep trying to make lab tests and such, but what you'll find is that all the lab tests aren't definitive. Biopsies aren't definitive, and like I said, I've got personal local evidence to back this up, though you can find that tidbit everywhere. The blood serum tests aren't definitive as discussed in the last discussion, and overlap with other conditions even when it does show there. The genetic tests aren't definitive because they remain unsure exactly what causes it. (There are ideas, don't take that to mean there's no clue, but they aren't sure yet.) What it comes down to is that the best way to find out is to just do it, but, well, as much as I love Western medicine in general it seems to be a bit hesitant to recommend that, they'd rather have a definitive procedure. (Me too, honestly, but if we can't, we can't.) So it's not like I can point to a peer-researched paper. It's just that if you dig into any given test, it's agreed not to be definitive, and the net practical result is that while the best research won't come out and say it, the best way to see if you have it is the trial. And as CapitalistCartr says, the telltale sign is that you will be sick as a dog, probably well into the next day. I experienced headache (or migraine, if you prefer, bad headache), nausea, the feeling of my intestines pulsing, and general lethargy, but I don't know that that symptom list is "official". What I am sure about is that there will be no mystery left. We're not talking "moderate chance of loose stools", we're talking "don't make plans for the next day".
- carbocation 16y ago
  The tests for Celiac are extremely good. 95% sensitivity and specificity? My life would be amazing if we had that kind of accuracy for every disease. The bigger problem is probably that people think they have Celiac when they actually have some other real problem that is not Celiac. Mislabeling things is deleterious for patient and physician alike. This is why, unless you actually have evidence to back up your claims about this test, you really should be much more cautious. If you can point to controlled trials or published works that show that your test is sensitive and specific for -- or even associated with -- Celiac, I'm all ears. However, I refuse to accept anecdote. Why not? I accept anecdote only in the absence of any evidence. We have actual evidence supporting actual tests that, while imperfect, have known error parameters. The fact that these tests are imperfect does not mean that your imperfect test is just as good; that's a logical fallacy. Sure, if eating X makes you feel bad, don't eat X; nobody would disagree about that. But don't label it Celiac unless you can show that your home-grown test faithfully diagnoses Celiac and not something else.

CapitalistCartr 16y ago

" . . . the telltale sign that occurs a few hours after the meal" I can answer this one. It ain't 'telltale signs'. It's miserable hell. Imagine eating some bad food. The effects are far from subtle.

carbocation 16y ago
Thanks. So that one could reproducibly identify this, can you be more specific? For example, is it diarrhea? Cramping pain? Other?
- jvdh 16y ago
  Second hand evidence, but what I've heard is that you'll know pretty quickly whether you have a response or not. Cramping pain, nausea, diarrhea, feeling miserable, you name it. And this was just from eating a small treat, not even a full meal. So if you want to know for certain, follow the diet for some time, and then feast on gluten.
  - carbocation 16y ago
    Thanks. Hopefully jerf can provide some citations for the diagnostic utility of this. It doesn't sound promising, honestly.
- joshkaufman 16y ago
  Here's what happens to me: when I eat gluten, I'm exhausted within a few hours, then for ~2 days after. I also have clear GI symptoms - bleeding, mucus, etc. (I've heard that exact symptoms vary, based on your personal level of gluten sensitivity - it's a spectrum.) When I eliminated gluten for 4 weeks, I felt much better - normal energy, no GI symptoms. Then I reintroduced a little - breaded ahi tuna on a salad for lunch. Within 2 hours, I was exhausted, and I was absolutely worthless for the next two days. My doctor did a Celiac blood test - it came back negative on 2 tests, and positive on the 3rd. I'm waiting on the results of a genetic profile, but my MDs said my self-experimentation is the clearest signal, and to stay gluten free regardless of what the tests indicate.
  - carbocation 16y ago
    Absolutely. This doesn't exactly sound like Celiac, but you're clearly having an adverse reaction to something you're eating, almost certainly in the wheat products that you're describing. At the end of the day for an individual, the diagnostic label is much less important than curing the disease, which it sounds like you're accomplishing via experimentation. Cheers.
  - nroach 16y ago
    Gluten intolerance /= Celiac disease. They're two separate problems but often confused because the latter incorporates the symptoms of the former. Whatever the final verdict winds up as, avoidance of wheat gluten is a preventative step common to both conditions.

jerf 16y ago

Best medical research is a bit coy on this front; they keep trying to make lab tests and such, but what you'll find is that all the lab tests aren't definitive. Biopsies aren't definitive, and like I said, I've got personal local evidence to back this up, though you can find that tidbit everywhere. The blood serum tests aren't definitive as discussed in the last discussion, and overlap with other conditions even when it does show there. The genetic tests aren't definitive because they remain unsure exactly what causes it. (There are ideas, don't take that to mean there's no clue, but they aren't sure yet.) What it comes down to is that the best way to find out is to just do it, but, well, as much as I love Western medicine in general it seems to be a bit hesitant to recommend that, they'd rather have a definitive procedure. (Me too, honestly, but if we can't, we can't.) So it's not like I can point to a peer-researched paper. It's just that if you dig into any given test, it's agreed not to be definitive, and the net practical result is that while the best research won't come out and say it, the best way to see if you have it is the trial. And as CapitalistCartr says, the telltale sign is that you will be sick as a dog, probably well into the next day. I experienced headache (or migraine, if you prefer, bad headache), nausea, the feeling of my intestines pulsing, and general lethargy, but I don't know that that symptom list is "official". What I am sure about is that there will be no mystery left. We're not talking "moderate chance of loose stools", we're talking "don't make plans for the next day".

carbocation 16y ago
The tests for Celiac are extremely good. 95% sensitivity and specificity? My life would be amazing if we had that kind of accuracy for every disease. The bigger problem is probably that people think they have Celiac when they actually have some other real problem that is not Celiac. Mislabeling things is deleterious for patient and physician alike. This is why, unless you actually have evidence to back up your claims about this test, you really should be much more cautious. If you can point to controlled trials or published works that show that your test is sensitive and specific for -- or even associated with -- Celiac, I'm all ears. However, I refuse to accept anecdote. Why not? I accept anecdote only in the absence of any evidence. We have actual evidence supporting actual tests that, while imperfect, have known error parameters. The fact that these tests are imperfect does not mean that your imperfect test is just as good; that's a logical fallacy. Sure, if eating X makes you feel bad, don't eat X; nobody would disagree about that. But don't label it Celiac unless you can show that your home-grown test faithfully diagnoses Celiac and not something else.