Save My Life: an update (Celiac biopsy negative)
savemylyfe.blogspot.com
savemylyfe.blogspot.com
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.)
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.
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.
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.
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.
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.
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.)
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.
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.
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.
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.
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.
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 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.
Well my bloodwork came "strongly positive", and the biopsy was negative. So what do we make of that?
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...
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.
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.
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.
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).
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.
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.
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.
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.
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).
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)!
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.
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-TellsCan...
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.
http://www.google.com/search?sourceid=chrome&ie=UTF-8...
And depression/anxiety causes inflammation too, so you really have to break the feedback cycle.
Edit: I found an NIH reference: http://www.nimh.nih.gov/science-news/2009/key-molecule-in-in...
Of the two options I mentioned, it's the former (peripheral inflammation with release of cytokines). Thanks for sharing.
http://en.wikipedia.org/wiki/Curcumin
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]
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.
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?
It's not an easy diet to follow, but the food test is simple - red iodine turns blackish blue in contact with starch.
Good luck!
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.
Western doctors rarely check for African diseases.
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.
I'm an atheist but surely prayer (in its highest form) can be equivalent to mindfulness meditation ?
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.