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.)
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.
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".
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.
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...
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?
Not dumb — in fact totally understandable — but yeah, that may confound interpretation of the test. Does your GI doc know this?
I'm not fully versed in the art of asking for another opinion, but I think it would be reasonable to get your doc involved. You could basically say that you appreciate the care she's given you and want to keep her as your GI doc (if true) but you'd also like to get another person to take a look at the biopsy sample, since it is obviously a very valuable and hard to get piece of tissue. I'm sure she could recommend another person to interpret the samples for you. I'm not positive that Celiac biopsy samples are kept, but I know that many other biopsy samples are, which is why I suspect that these are, too. At the very least, they should have images of the samples. Based on her apparent discomfort with the procedure, I'm half wondering if there was a misinterpretation, and I'm half wondering if she was unable to biopsy the right tissue; both of these concerns could be resolved by a third party. It wouldn't be cheap, but it has a small chance of saving you from having to do another biopsy.
That said, in the setting of a one week wheat deprivation diet, interpretation probably won't be totally clear even if you did have Celiac, so a second opinion on these samples may well not be worth it.
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.
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.
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.
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.
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.
"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.
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.
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.
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.
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.
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.)
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.
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).
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.
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.
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.
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".
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.
Thanks for the explanation. I hear you on the genetic testing. The whole process is frustrating. I do realize that I sound like that patient who wants to have "disease X" at any cost, and is looking for loopholes in the diagnostics.
But I want to know what's wrong with me, and what I can do to get better. This whole Celiac thing is really starting to feel like yet another dead end for me (Lyme Disease, Fibromyalgia, Sleep Apnea, Psychiatric, etc; just add it to the list.)
Still, I want to give it a good shot, and that seems to mean staying on the diet for a few months and see if I improve. If I feel better, who cares what the tests say? Though it would be nice to have confirmation, I just want to feel better.
Yes, as I suggested in another post in this thread, there is absolutely no risk in doing the no-gluten diet (except maybe higher cost of food), so there is basically no downside. Your expected benefit is greater than or equal to zero, so keep it up!
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.
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.
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).
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)!
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.
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:
> 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
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:
In vitro and animal studies have suggested that curcumin may have antitumor,[9][10] antioxidant, antiarthritic, anti-amyloid, anti-ischemic[11], and anti-inflammatory properties.[12]
Interesting; I've never heard that before. Do you mean that there is peripheral inflammation and the cytokines pass through the blood-brain-barrier, or do you mean that there are actually inflammatory cells that enter the brain and cause depression? Also, can you cite something more specific than a Google search? Most of those are for-profit or interest group websites.
Yeah, if you Google for cytokine theory of depression there are a bunch of papers. I'm not an MDPhD so I have a very limited understanding of the science, but from observation and personal experience the hypothesis seems quite accurate. The good news is that it's extremely easy to manage, the bad news is that no one knows this.
You do realize that smoking cannabis can be against the law ?
And that if savemylife is in the wrong jurisdiction that can put him/her in an afwul lot of trouble ?
I take no stance on whether or not it should be legal, it's just a fact that it currently is illegal in many places and I'm kind of surprised that you'd suggest someone do something that may very well be against the law where they live.
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.
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.
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.
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/ . Also cheaper (60 day supply for under $30). I, my wife, and my mother-in-law have all had good results.
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.
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.
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.)