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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Casein Experiment: A1 Vs A2
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Hello!

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!

R

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There has been a lot of debate about A1 and A2 milk here in New Zealand. Our giant diary conglomerate, Fonterra, which handles all the export of our dairy products, and of which most of our dairy farmers are shareholders, has done its best to put the kibosh on it because all their herds are A1. Down here where I live our local Ag college has done research on it and there are farmers who have developed herds of A2 milk producers. It is darned difficult to get your hands on A2 milk though because of Fonterra, and I am really not current on where the battle lines are drawn, but I believe that A2 milk holds the answer (perhaps?) for the casein intolerant. I am fortunate to not be dairy intolerant, but would prefer to drink A2 milk.

I have vivid memories of coming off the farm. as a nine-year-old, where we milked our own jersey cows, and being faced with "town supply" pasteurized, homogenized milk, which made me puke. I have never been a milk drinker since, but do eat cheese, yogurt and other dairy, although I prefer goat cheese.

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Raw milk is a "black market" enterprize in the US. It is illegal to sell any milk product that has not been pasturized. The laws can vary from state to state. Some people get around the loophole by joining a co-op farm. That way they have part ownership of the goat or cow and therefore are not "buying" any milk.

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Raw milk is a "black market" enterprize in the US. It is illegal to sell any milk product that has not been pasturized. The laws can vary from state to state. Some people get around the loophole by joining a co-op farm. That way they have part ownership of the goat or cow and therefore are not "buying" any milk.

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...

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From what I read, it's not so much that one kind of animal has only one kind of casein, but the ratios are significantly different, and not just A1 vs. A2. But, for people who don't have a severe intolerance to casein (and we're talking about a different reaction here than celiac, I'd never suggest this with gluten), the levels of the subtypes of casein that someone is bothered by may be low enough in one animal but not another. (Not functionally different than what you said, but I think it's useful for folks trying this out to know that it may depend on level of sensitivity as well as subtype of sensitivity.)

I found a similar thing - I seem to be able to tolerate small quantities of goat cheese (and goat kefir :) ), though I haven't tried raw. (Both from the difficulty of getting it and from the being-pregnant perspectives.) That said, if I eat too much, I still feel off. Nice to have the option, though!

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I seem to be able to tolerate small quantities of goat cheese (and goat kefir :) ), though I haven't tried raw. (Both from the difficulty of getting it and from the being-pregnant perspectives.) That said, if I eat too much, I still feel off. Nice to have the option, though!

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!

R

p.s. 24 hours and still no symptoms! Got some more fresh goat milk this evening... mmmmmmm....

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Casein induced enteropathy is extraordinarily uncommon. It's not the same mechanism of intolerance as celiac disease. Basically, it's thought that it's an immune response, but not one that attacks the body (though that's not to say it doesn't generate inflammation that isn't good for the body). The "tolerance limit" theory of a non-enteropathic casein intolerance is a theory, but so is the idea that there are immune mediated food intolerances outside of classic allergies and enteropathies (and enzyme deficiencies).

How I know is that I feel "off" if I eat it too much or too frequently. It's not scientific by any means, but I don't really care about the details on this one. :)

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Casein induced enteropathy is extraordinarily uncommon. It's not the same mechanism of intolerance as celiac disease. Basically, it's thought that it's an immune response, but not one that attacks the body (though that's not to say it doesn't generate inflammation that isn't good for the body). The "tolerance limit" theory of a non-enteropathic casein intolerance is a theory, but so is the idea that there are immune mediated food intolerances outside of classic allergies and enteropathies (and enzyme deficiencies).

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.

Thanks!

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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!

R

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It should not be too difficult to find "A2" milk in France.  The Guernsey cow is the most popular cow in France and Europe and it has A2 proteins in the milk.  The cow with the next highest level of A2 protein is the Jersey Cow. Both of these are the most popular milking cows in France. Because this country needs good milk to make excellent cheese, they still use the best cows, they care more about quality than quantity, unlike the USA and Australia.  New Zealand is in the midst of  a 10 year plan to change all herds to A2 herds. Food, or rather, Milk for thought!!!

 

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It should not be too difficult to find "A2" milk in France.  The Guernsey cow is the most popular cow in France and Europe and it has A2 proteins in the milk.  The cow with the next highest level of A2 protein is the Jersey Cow. Both of these are the most popular milking cows in France. Because this country needs good milk to make excellent cheese, they still use the best cows, they care more about quality than quantity, unlike the USA and Australia.  New Zealand is in the midst of  a 10 year plan to change all herds to A2 herds. Food, or rather, Milk for thought!!!

Welcome to the forum, xmasdeer.  Please note that this topic is four years old and the original poster hasn't been on since then.  Information on this topic may have changed since 2010.

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