Avoiding Rye, Need Help!

[azuroo]

After extensive allergy testing it appears I am allergic to rye and pistachio. Not wheat or any other grains or nuts! I've also discovered that I seem to be lactose intolerant, and lactaid totally fixes that when I eat dairy in moderation.

So here's my problem. I've noticed when I eat anything with rye my mouth feels sore and swollen, my nose is stuffy, I have lots of drainage, and my intestines burn very badly. I can specifically tell when I've accidentally eaten rye now. I keep accidentally eating it despite my best efforts to avoid it! I'm having trouble finding info on how to locate hidden rye in products. I avoid the obvious like rye bread, alcohol that may contain rye, etc. I am super sensitive to it apparently, so I'm worried about flours that have been cross contaminated. I've gotten sick after eating pastries from bakeries that carry rye bread, so there must be crumbs on gloves making me sick.

This is driving me crazy! I hate laying around feeling like crap because I accidentally ingested rye. Any tips on what to look for to avoid it completely? Everything I find online is for gluten free, but I can eat gluten. Just not rye. I wish it was required to be listed as an allergen, that would be awesome.

[Pac]

If a bakery makes rye bread, the flour gets into the air and contaminates pretty much everything and nobody will care too much since all the gluten grains are considered as the same alergen. Beside that, rye, wheat, barley and oat grains look very similar so I suppose wheat flour will be often contaminated? In the field close to our house, every time they sow wheat, there is lots of rye mixed in - rye is higher so you can see it very well even from a distance.

Also, are you sure you don't react to other grains? With allergy you have over quite high chance of cross-reacting to other gluten grains and also a lesser chance of reacting to other grains - rice, corn, millet. Did you get tested for celiac as well or just allergies? Since you are lactose intolerant, it might be worth testing.

To track down rye contamination, the easiest thing you can do is going gluten-free for now and then test your reaction to different wheat, barley and oats products. I know it sucks to avoid more than you would need just due to contamination, but at least you have the choice - avoid a few more things or feel crappy. (need to admit I go for the crappy option sometimes )

IMHO it will be very hard to get uncontaminated wheat and barley.

Good luck!

[psawyer]

Pac makes sense.

Rye is not required to be listed as an allergen in the USA. It will be in Canada, beginning in August of 2012.

But, having said that, rye does not hide. It appears in certain baked products where you would expect it to be, such as rye bread and pumpernickel. It will not be disguised as "flavor" in an ingredient list.

[Juliebove]

Yep! I ate some sourdough that had rye in it. Who would have thought? You might have to make your own bread at home or at least buy some from a place that doesn't make rye. I have only found one bread that my daughter and I can both eat. I can't have any dairy at all and we both have to avoid certain nuts. She can't have flax. And I can't have oats.