[jerf]

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.)

[carbocation]

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.

[jerf]

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]

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.

[savemylife]

"The tests for Celiac are extremely good. 95% sensitivity and specificity"

Well my bloodwork came "strongly positive", and the biopsy was negative. So what do we make of that?

[carbocation]

Your first bloodwork was neither here nor there. Your second bloodwork was positive. At that point, you rightly earned a biopsy. The biopsy is the definitive diagnosis, unless you had been on a wheat-free diet prior to the biopsy (which would cause the duodenum to return to normal). That wasn't the case, right?

Now, the interpretation of the biopsy might not be great. Have you considered asking your GI to send it to (somewhere else of your choosing) to get a second opinion?

Edit For some reason, your other posts seemed to convey that your GI was not very confident in her biopsy of your duodenum. This does make me a bit nervous. This is why it's hard to play doctor over the internet. If we were in real life, I could probably get a much better sense of whether or not to trust the biopsy. Hopefully her biopsy is at least good enough to prove to an outside reader that she did indeed biopsy the duodenum...

[savemylife]

I actually did go gluten-free for about 7 days prior to the biopsy (yeah, that was dumb). When I had my GI appointment, she had me go back on gluten for 3 weeks prior to the procedure, which I dutifully did.

She said I was extremely uncomfortable during the procedure, more so for the colonoscopy than the endoscopy/biopsy. I don't think she said outright that it prevented her from getting good samples, but she did say that it might make sense to repeat the procedure in a few months if the genetic test comes back positive, or if the gluten-free diet produces a positive result (of course with appropriate gluten-challenge beforehand). She said that if we do that she'd give me full anesthesia so that she can get further into the tract for samples.

I would certainly consider asking for another interpretation of the biopsy. Do they actually keep them around for that kind of thing? Where would I request it to be sent?

Thanks very much for your insight, carbocation.

[CapitalistCartr]

" . . . 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]

Thanks. So that one could reproducibly identify this, can you be more specific? For example, is it diarrhea? Cramping pain? Other?

[joshkaufman]

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]

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]

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.

[jvdh]

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]

Thanks. Hopefully jerf can provide some citations for the diagnostic utility of this. It doesn't sound promising, honestly.

[savemylife]

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]

"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]

Yes, but if it takes a few months to start to feel better (improvement takes weeks-to-months, not days, right?), then it seems like I need to give it a good 3-4 months to test that out. Especially since it's hard to be truly eliminate all sources of wheat for a newbie. I want to give this a really good try, and then if I'm not better in that time period, I can check celiac/gluten off the list of potential causes. Believe me, I'm not excited about having to give up pizza and beer. :-)

I think I'm actually in agreement with you here insofar as I'm trying to pursue one thing at a time, and not go crazy trying 5 other treatments simultaneously. I just don't want to have the Celiac issue crop up 2 years from now and wonder if I really gave it a good enough try.

[grandalf]

I'm curious if you could post about your diet and exercise habits...

[savemylife]

Sure. Prior to the Celiac possibility, I did not eat that well. Lots of prepared (Healthy Choice/Lean Cuisine) frozen meals. Not exactly fast-food, but certainly not cooking.

I weigh about 155 at the moment, which is down from 180 a year ago, thanks partially to Weight Watchers, and partially to the gluten-free diet. I'm small, so an ideal weight for me is probably around 135/140.

Now that I am (temporarily, at least) gluten-free, I'm eating more healthily than I ever have in my life. Lean meats/fish and fresh veggies just about every meal. Some rice and potatoes here and there. My snacks are small amounts of fruits and nuts. I do allow myself some ice cream (after carefully scanning the labels for gluten).

Currently I walk about 3 miles more or less daily. In the past I went through various phases where I ran 3-4 miles daily (often twice daily). However physical exertion really makes me feel worse sometimes, so it's very hard to stick with it. It's not the "good" pain that comes with solid exercise (I'm familiar with that). It's more like my head feeling like it's going to explode, feeling incredibly dizzy and being totally useless the rest of the day.

[grandalf]

Have you thought about following this guy's health diet?

http://drmcdougall.com/medical.html

He's a doctor and the diet works for a lot of people. If I were you I'd probably try it for 3-6 months.

[pasbesoin]

Re the beer, I never found a gluten free beer I really enjoyed. I'm not much of a drinker, but I've been happier with the occasional good hard cider.

As for a decent cider that's more widely available, I'm kind of partial to Woodchuck's 802 (named after their area code). (I have no interest in Woodchuck. Just passing on my experience.)

It doesn't replace beer in my life, but it's more enjoyable than an off-tasting gluten free beer. (I keep hearing there are really good gluten free beers out there, but I've yet to encounter one.)

While I'm commenting, if you think you might be gluten intolerant in addition to or as opposed to celiac, you may want to take a look at dairy, specifically casein. It is similar to gluten and some people with gluten intolerance also have trouble with casein.

Best wishes.

[savemylife]

I'm not a cider fan (and I've lived in Normandy, where they have the good stuff!) I've heard from a Belgian-beer aficionado friend that there are good rice beers, but haven't tried any yet. Beer is refreshing in the summer, but I'm also happy with a nice whiskey, which thankfully is Celiac-OK.

Pizza is the harder thing for me to give up. I've tried a gluten-free pizza recipe a couple of times, and the result wasn't very good. Willing to keep trying though.

[pasbesoin]

If you ever make it to the Chicago area, I've heard very good things about the pizza at

http://www.rosesbakery.com/

I haven't had it, but the recommendations come from people I trust. It's quite expensive, though. And, as far as I know, they won't share their recipes.

I have had some of Rose's bread, and while also absurdly expensive, it's come the closest of the things I've tried to tasting like "real" bread. (Their cookies are pretty good, too.)

My impression is that if you want good pizza or bread, your best bet is to make if from scratch, following recipes such as those in "The Gluten Free Gourmet", "The Gluten Free Gourmet Bakes" (or a similar title; my copy's currently loaned out), and the like. And the gluten free doughs tend to be best when freshly baked; they may not hold up as well over time.

As for me, that's all too much effort, right now. So while I have the books, I've just ended up eating rice and other things that are more convenient for me. (So, I hear things, but my first hand experience is limited.)

[ABrandt]

Many Celiac patients are asymptomatic. Would this pig out test still be conclusive?

[jerf]

Imagine that something is dribbling fuel for a fire into a container. This is your intestines natural healing process. Then, every time you eat, someone tries to catch the fuel on fire. A untreated celiac patient's intestines don't "catch fire" with every meal with gluten in it, because there isn't always even enough fuel to light a fire. Waiting three weeks lets enough metaphorical fuel build up to catch on metaphorical fire. (This metaphor isn't perfect but should demonstrate the point.)

Three weeks is even a bit generous; two is frequently recommended.

If you can go without gluten for three weeks, then freely eat gluten again, it is almost certainly not celiac. Or it's very, very weak, and can't be wrecking your life like savemylife's.

[whirlycott1]

This is absolutely wrong. My father has DH, my aunt is celiac and my wife has a gluten allergy. My next door neighbor died earlier this year from problems relating to his inability to handle his celiac diet properly. I say this only to note that I have a lot of exposure to gluten related problems in my life.

In many people, my father for instance, gluten problems don't manifest themselves until much later in life, sometimes out of the blue, seemingly unprovoked.

While what you suggest may yield some cluees, only a fool would follow your advice about this being definitive (your words).

[savemylife]

I don't think jerf meant that individuals who test positive (via serum or biopsy) should try a gluten-challenge, and then rule out Celiac based on not having a reaction. I think rather he meant that those who test negative on the standard tests should try the gluten-challenge, and if they show no reaction, they should move on and look elsewhere for a solution. Not meaning to put words into his mouth, but that's what I took away from it.

Sorry to hear about your neighbor. I've wondered lately how many people actually die from Celiac, either directly, from complications, or via suicide due to lack-of-diagnosis. I bet the suicide numbers are pretty high.

[whirlycott1]

The problem with my neighbor was that he was an old (75 or so) stubborn WWII veteran who didn't recognize that he had a problem earlier on until he landed in the hospital and had almost no intestine left. He almost died there since there was a lot of internal bleeding and still, in the US anyway, Celiac isn't well understood by all doctors. He had to change to a gluten-free diet, but basically he couldn't figure out how to eat since everything he ate for his life had gluten in it. This was more of an education and class issue than anything, in my view. Later on in life, he just got more and more depressed about his situation and eventually died just a few days after he broke his hip in hospital while there getting treatment for internal bleeding caused by his Celiac. His family said at that point he had lost his will to live and simply gave up.