This is how it goes.
I find out I have a disease, a disorder, an intolerance. And then I think the following thing, "So that's what the problem was! That's what was causing all this pain/brain fog/fatigue/itching. Now it makes sense, phew. Now I'll finally feel better."
I go through a research-a-holic stage for a few days. And then I am on the diet and usually it's tricky at first. I make mistakes, or what seem like mistakes. I feel better in some ways, but not better in others.
And eventually, I'll start to think that maybe, just maybe, there's something more going on. I'll start to subconsciously watch for when I don't feel well, to see if there's any correlations I can find. I'll start to eye other conditions and problems that people mention in passing on forums for those with my condition.
And the thought will eventually pop up: that kind of sounds like the same problem I'm still having.
Honestly, I dismiss that first thought. I've had many years conditioned to feel like I must be a hypochondriac. All the tests were negative, so I must be healthy, right? So yeah, thought dismissed.
Some of them won't stay dismissed, though. I'll keep coming back to them from different angles, picking at them, because something in my brain won't leave it alone. There's so many similarities, am I sure this isn't an issue for me?
And then will come the final moment when I feel a sinking in my gut because I'm pretty darn sure this is a problem as well. And I go and I typically get tested at the doctor's office to get it confirmed, and lo and behold, I'm right. That's what I've got.
It's been helpful that these are mostly conditions that can be tested at the doctor's office. Because I know that a lot of people do think this behavior is a hypochondriac type of behavior. Except, it's not hypochondria if there's actually something wrong with you. And if you want to get better, you pretty much have to have a higher level of awareness about your own health because if you have some weird stuff, most doctors don't seem to be much use in diagnosing you.
When it came to Celiac Disease, I asked the doctor to test for it at an appointment for something completely different, because I had wondered about it.
When it came to sulfite sensitivity, I ended up having to do a double blind trial with sulfites added to water.
When it came to MCAD, again, I was asking a doctor about getting tested for it...although to be fair, he had just had a patient diagnosed with it and was recommending to me that I go get tested for it at the same time.
And now there's another one: a need for a low oxalate diet. This one, however, I won't be able to be tested at a doctor's for. It's not really all that recognized by the medical community as important in situations like mine. But I have come around to this over and over again - many folks in the mast cell community seem to have a need for this. And I just found the piece of the puzzle the other day.
There are two things in my diet I have had a terrible time fully getting rid of: chocolate and potatoes. I know I don't do well on these, sometimes really not well, but when I try to get rid of them, I'll feel great for a day or so, and then terrible for weeks and weeks. I know this about chocolate, have for years, but I'd usually just power through in the past when I was 'dieting.'
Now, though, the 'terrible' includes mast cell issues like breathing problems and pain bad enough I can't fall asleep until the wee hours of the morning. So I keep failing, giving up after a few weeks and eating these again, and it's been a vicious cycle for over a year.
Turns out, this could be due to oxalate dumping. The body doesn't use oxalates - it doesn't even break them down, simply gets rid of them through the kidneys and the skin, as well. There are gut bacteria that eat them, but you have to have a healthy gut for this to work (most celiacs have poor gut bacteria levels and variety, even after going gluten free). The body can eliminate a finite amount of oxalates, but if the intake levels exceed the amount you can excrete, the body simply stores oxalates in your tissues and holds onto them until you are eating fewer oxalates.
And when that happens, the body essentially dumps it back into your blood stream, to be flushed out again.
So what you end up with is a person who drops her oxalate levels dramatically (by eliminating potatoes and chocolate, in my case), feels great for a couple days as her body has no oxalates messing about causing pain and problems, and then her body dumps massive amounts of oxalates into the blood stream to get rid of them, where they can cause symptoms until they are fully eliminated.
And depending on how many years you have been storing oxalates, this can go on for a long, long time. Weeks. Months. And then you would feel better again, once all the oxalates are dumped.
And this? This has been my pattern of health. Change the foods, have a good couple of days, and feel terrible again. In the past, before I was diagnosed with anything, it would always take a couple weeks and then I'd feel better. I guess that's how much oxalate I had (if this is it).
Now, the last few times, the '2 weeks of blues' I was expecting didn't happen. It was more like the month of blues and was triggering mast cell activation at the same time so much that I finally stopped trying and went back on the bad foods.
However, I've been eating potatoes as my main carb for about two years now. If I have any oxalate issues, it's likely there's a lot stored in my tissues. So if I want to test this out, I've got to slowly lower my oxalate load so that the oxalates dumped into the blood stream are done more slowly, with fewer problems.
I've started this already, but I won't be able to tell how things are going until mid-July.
I'm not looking forward to this. I'm really tired of researching and trying new diets and having to keep close track of things I eat, more than I already do. I want to be done. I may not be well, but I want to at least just know what will keep me safer and healthier, as healthy as I can be, anyway.
I'm really hoping that this time, my 'that's what's causing all the trouble' medley will come to a close. It would be nice to finally relax and just rest on my laurels for a while.
So wish me well on my new low oxalate diet. We'll see how it goes.