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Okay, I guess that would be a problem then! I generally stay far away from more commercialized chocolate anyway, for plenty of other reasons, so I guess I haven't come across chocolate bars that have these extra ingredients in them. From my experience, organic chocolate, or non-organic but all-natural chocolate, is usually safe. Unless of course it says "may contain gluten, etc."
I found this thread through searching for rheumatoid arthritis, and was very interested to read it. How are you doing now, a few months later? I hope you've managed to solve this mystery and are feeling back to normal again!
In partial response to your question of why now, and why at your age, I experienced a similar thing a few months ago, though on a smaller scale. I've been strictly gluten-free for a year and a half now, and back in early February all of a sudden my finger joints started swelling up and were quite painful. I had just moved with my husband to France to live with his family on their farm for several months, and so health care/seeing doctors/getting tests was a tricky thing, being technically a visitor. The swelling/pain kept up for about a month and then started getting better. I had a lot of communication with my family's naturopath back in Oregon, where I'm from, and he said it sounded like rheumatoid arthritis symptoms, but I still haven't been able to get tested.
To make a long story short, I'm much better these, but still don't know what exactly the problem was, what caused it, and why it's better now. One possibility is gluten contamination, since all of a sudden I wasn't making all of my meals anymore, and though my in-laws were good at being careful about how they prepared the food and stuff, I'm pretty sure I got the accidental gluten here and there. Another possible factor is the cold, since their house isn't heated and I was doing a lot of outside work. This is supposedly a big factor in RA symptoms. And now it's warmer, and no more symptoms. There's also the stress factor of moving to another country and living with my in-laws. Big stresser there.
But, like you, I wondered why now? a lot. I was 28 at the time, and like I said, had been strictly off gluten since my diagnosis a year and a half before. Researching RA on the internet can be a scary thing, especially for young people. When I get back to the States this fall, I'm going to have some tests done, because it'll be good to know, even if I don't have symptoms anymore. But at least I have an idea that it was linked to gluten contamination, and that if I'm extra careful I can control these symptoms. Something that seems weird, though, is that I don't normally have violent and automatic reactions to gluten. If I get some contamination, I usually only notice the next day, or even two days later, and my symptoms are more often mental/emotional, with only mild g-i problems. So why would I all of a sudden be getting these serious joint symptoms, from what was probably only a tiny bit of contamination?
So I still have a lot of unanswered questions, which is why I was interested in your story. I'd love to hear an update, and again, I hope you're doing better!
Hello folks, just a quick update: I've been drinking raw goat's milk every day (probably the equivalent of a large glass per day) for five days now, and still no ill effects. The only change I notice is that my stool is harder than normal, and normally it is quite soft, so this seems to be a good thing. Perhaps my digestion has improved due to the beneficial bacteria in raw milk. I'm going to further this by making yoghurt sometime in the next few days, and I'm also planning to try cheese too, still raw, from these same goats.
Thanks for the comments so far, and I hope to hear more!
Hmmm, that's really interesting. I thought that casein did pretty much the same thing, since, as I understand it, casein resembles gluten at the molecular level so closely that for some people, their immune response is activated for casein just as it is for gluten. I assumed that this would then produce the same result in terms of damage done to the intestines. This is what I've gathered from all the information I've read, including the documentation that came along with my test results from Enterolab. I'd be interested to read up on whatever you're reading, if you can give me some references, since it seems to paint a bit of a different picture.
I wonder about this too, if it'll turn out that I'm able to tolerate a certain amount, but not a whole lot all at once. On the other hand, I wonder how I'll know. I mean, I already don't get very severe symptoms from small amounts of gluten contamination, unlike some people, but I know that even when I'm not reacting, there's damage being done. Is it the same with casein? If I don't react to a small amount, can I be sure that that means I'm okay with eating a small amount, or is it doing long-term damage all the same?
What about you? Do you know for sure that you can actually tolerate small amounts without any damage being done? This is something I've been worried about for a while, and I don't really know how I'd actually find a definitive answer.
Take care and thanks for your response!
p.s. 24 hours and still no symptoms! Got some more fresh goat milk this evening... mmmmmmm....
Actually, I believe it depends on the state. Vermont recently legalized the sale of raw milk, although farmers are not allowed to advertise or publicize it. Or something like that; I forget the details. I've also heard of people being able to get around the legality by buying raw milk "for their dog", which then doesn't put the farmer at any liability risk since it's not technically being sold for human consumption! Hopefully we'll see these laws start changing on a larger scale soon...
I was diagnosed gluten intolerant (with non-celiac genes) and casein intolerant by Enterolab about a year and a half ago, and have been strictly off of both ever since. The occasional accidental contamination gives me symptoms that are not always obvious, and rarely very violent, more often being energy loss and depression, and only mild gastro-intestinal problems.
Lately, I've been doing research about casein, and discovered the whole A1 vs A2 beta casein debate, which in short points out that there are two kinds of casein, and people who have problems with dairy might actually be reacting only to the A1 (which is in milk from most, but not all, breeds of cows) and might be able to tolerate A2, which is in goat, sheep, and some kinds of cow milk. Enterolab's casein testing doesn't distinguish between the two. Since I've been feeling pretty healthy lately, I decided to do some experimenting. I'm currently lucky to be living next door to a goat farmer, and yesterday I went over to see if he sold raw goat's milk. Though he doesn't market his milk, but makes it all into cheese, he told me to come back in the evening and I could have some while he was milking the goats. So I took a couple of jars, and got them filled straight from the udder. Oh, was it heavenly! Fresh, warm, milk, and especially after not having had any for a year and a half!
So, that was about 14 hours ago, and so far I am feeling perfectly fine. I'm thinking I'll have a bit every day for a few days to see how it goes. Totally fresh, raw, goat's milk seems like a good place to start, and maybe from there I'll experiment with other things, like trying to find some raw A2 cow's milk (I hear it's starting to be marketed in the US and Australia, but I am living in France at the moment, so I'm not sure how easy it will be to find).
Anyway, I wanted to post this here because I'm wondering if anyone else has been through similar experimentation, and what the results were. Also wanted to share my experiment as it develops, in case anyone out there is wondering the same things that I'm wondering!
Now, when I got my Enterolab results back, the casein antibodies were present, but they were very few, just barely at the limit, whereas my gluten antibodies were numerous. This is probably because at the time I had been vegan for about a year, so I wasn't ingesting casein anyway. Though it also could mean that I can tolerate a certain amount of casein. It's so hard to figure all this out, and it seems like very little research has been done about exactly the link between gluten and casein, like whether or not casein intolerance is a lifetime thing like gluten, or if it might be able to be tolerated after a certain amount of intestinal healing from gluten damage has taken place. So, I guess experimenting is the way to go!
Any comments, anecdotes, etc. will be greatly appreciated!
I am not aware of chocolate being a problem, unless of course it has something added to it, like cookie crumbles to make it crunchy... otherwise, any plain dark chocolate should be fine, as it normally just consists of cocoa, cocoa butter, sugar, and sometimes soy lecithin. A particularly nice chocolate that is made in Ontario, however, is Cocoa Camino. It's organic and fair trade, and in my opinion, the best chocolate bars anywhere. They make chocolate powder too, and I believe baking chocolate, but I'm not sure.
I'm curious, though, why you were under the impression that chocolate is a tricky thing to find as a celiac.