Feeling Cross About "cross Sensitivity"

[Raywuwei]

I've already written here about oats a few times because I am desperate to reintroduce them into my diet, but I am being strong and sticking with the one year elimination plan. But now that I've swallowed that pill, I just learned at a GIG meeting that people can be as cross reactive to coffee, dairy and yeast as they are to oats! They all have proteins that are super similar to gluten. People, I live in Portland Oregon. And they're trying to tell me I can't have my coffee??

I just can't seam to get a handle on this diet. Just when I think I am being strict enough (following doctor and naturopaths orders, btw!) I hear from some strict celiacs that there is more I need to cut out. Or that I'll never be able to eat something again. And so I can't even tell if I am feeling healthy or not, and I am just so confused about what to put into my body. Aren't we all a little different? Oh, I dont know, UGH!

So about this cross sensitivity stuff. At the GIG meeting they were saying that if you reacted to coffee, oats, dairy or yeast, then you'd have to eliminate it for life. That there is no training your body to understand their proteins are different from gluten. I think I feel fine when I have coffee, but I mean it's a laxative so how do I know if my resulting bathroom things are a bad reaction or regular coffee stuff? I know I'm fine with dairy, I feel great when I have kefir and icelandic yogurt. I dunno about yeast.

And apparently there is a test you can order on this stuff, Cyrex #4 Cross reactivity test. Anyone heard of that? I don't have health insurance, so I can'r order one up. But would you trust those results anyway? I hear that the whole IgA, IgG distinction of sensitivity and intolerance is still greatly debated because again, no one in the health community can agree about what we celiacs should be eating. Grrrr.

[kareng]

Your insurance wouldn't pay for that sort of unproven testing.

This " cross- reactivity", the proteins are almost like gluten, theory has no real scientific merit that I have seen. People have posted all kinds of things on here to prove it - a woman with no medical or chemical training and a blog, something that looked like a kids high school sciene paper, info from websites trying to sell tests, books, miracle cures, etc.

Most of us who want to, drink coffee. A few people with Celiac have a problem with coffee. A few people without Celiac have a problem with coffee. My SIL can't have dairy but she doesn't have Celiac ( they have looked a few times). I can have dairy and I have Celiac ( they only had to take a quick glance).

An interesting thought - brewed coffee has almost no protein - like 0.2-0.3 grams per cup. Perhaps they are eating coffee beans?

[Lisa]

Cross reaction is a relativly new terminology and definition. And I'm not too sure that there are substantiated studies for cross reaction, but there may be. Although, it's very typical that many people here have multiple intolerances that they have self discovered over a number of years. I'm not one of them. What is the common demonator, I don't know.

I would recomend that you stay exclusively on the gluten free diet, keep a food diary for several months. And after some time, you still have issues, then explore other possible intolerances.

An allergy test could be an aid, but I have no experience with that. AND follow your gut.... enjoy your coffee!

[IrishHeart]

No peer-reviewed scientific evidence/articles whatsoever of this "cross reactivity" theory

or the "tests" that prove it. I have looked for them in Pub Med.

No celiac specialists support this "theory" at this time --nor do they find

any of those Cyrex lab tests valid.

I find it astounding that someone at a GIG meeting is telling you this.

Unless you have digestive issues with coffee or dairy or yeast, etc. or an allergy to them,

there is no reason for a celiac to avoid those "alleged" cross-reactive foods.

[kareng]

I will say I have seen people use the term " cross reactive" in different ways. Some just mean they are intolerant to something and it feels like when they are glutened. It does not mean that the offending food had a gluten- like protein. For example, bananas make me burp and bloat much like gluten does. Some would say I " cross react" to bananas because they cause me the same discomfort/ issues as gluten.

The definition I think you are asking about has been bouncing around the Internet, first spread by a non- medical, non- chemist's blog. This theory is that your body looks at all that protein in coffee ( less than a third of a gram) and thinks its gluten. I'm not a chemist, but I don't see how the proteins in such diverse foods could all resemble each other.

[mushroom]

It is a brave soul indeed who would get up and say "All celiacs should avoid x, y, z " (apart from gluten of course),or "No gluten intolerant should eat a, b, c "(apart from gluten) because there is so much we don't know, such a paucity of scientific evidence and so much pseudo-science spread around on the internet and in books. Everywhere we turn someone is promoting this or pooh-poohing that with very little support for any statement. The best way to determine what your body tolerates is to test it out, one food at a time. It is still the most infallible test. If it doesn't like it this year, test it next year. If it doesn't like it then, it is up to you whether you want to try it again or not.

[Raywuwei]

Perhaps they are eating coffee beans?

Haha! Who knows.

AND follow your gut.... enjoy your coffee!

Thank you, I WILL!

No peer-reviewed scientific evidence/articles whatsoever of this "cross reactivity" theory or the "tests" that prove it. I have looked for them in Pub Med. No celiac specialists support this "theory" at this time --nor do they find any of those Cyrex lab tests valid.

Oh, thank goodness. I'm glad you've looked into it!

The best way to determine what your body tolerates is to test it out, one food at a time. It is still the most infallible test.

Good, that is what I had thought before this craziness!

Thank you all, I feel very much relieved

[Celiac Mindwarp]

I agree with the posts above. It seems to me reading around that lots of celiacs and those with NCGI have ranges of intolerances, maybe cross reactivity, but that the only thing we all share beyond needing to avoid gluten is that we all have to find our own way through and find out what we react to, and in which quantities and combinations.

If you have already done a year of elimination diet you are more than up to keeping going and working out what works for you.

It might be worth trying a coffee elimination, who knows if it will make a difference. I am one who did have to give it up, but you can be sure I wouldn't if I didn't have to.

The other thing I have seen here is that sometimes people gain foods back after eliminating for months or years. I have been able to handle 2 to 3 cups of regular tea i a week in the past year, after 9 years without.

One of the things I love about this board is that people tend to make suggestions, rather than give instructions. Looking at all the range of experience has saved me years of trial and error in elimination. I am not there yet, but on the way. Mourning a few loses , celebrating some gains and new foods and combinations.

Sounds to me like you are doing a great job, keep it up

[dilettantesteph]

My local celiac group broke with GIG because they were accepting non scientifically validated theories. I wonder if that was what they were talking about? I have looked and read and I found very little in the way of scientific validation for cross reactivity. I'm pretty sure that there is none for most of those things that you mentioned. There definitely is evidence for cross reactivity for oats. Botanically speaking, oats are fairly close to wheat, barley and rye. Coffee is not.

As mentioned above, some celiacs do better eliminating coffee and the best way to find out is to stop drinking it for a couple of weeks. That is a lot less expensive than a questionable test array.

[GFinDC]

Hi Ray,

I agree with the posters before also. We all can develop intolerances ourselves, or not, but they aren't all the same for everyone. Coffee is a stimulant, but I don't think it causes D for most people. I doubt there would be very many Starbucks around if it did that. that's a pretty unpopular side affect for a product. So, IMHO, if coffee is causing you D then something may be going on there. It could be the coffee itself or something you put in it . Like creamer or other. Eliminating it for a while is a good test. I had cut out coffee a few years ago and all caffeine, but I can now drink black tea. I haven't tried coffee though.

[eers03]

Ray, when I saw my Celiac specialist at Mayo he told me that coffee does not have gluten in it. I mentioned the same points that you just did regarding cross sensitivity. He was not the least bit concerned about me consuming coffee.

However, the dietician there did not want to see me exceed a 3 cup serving per day. Hope this helps.