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Soy allergy resources? [May. 8th, 2013|11:30 pm]
Against the grain

food_allergies

[becala]
Hi all, I'm looking for good forums/groups/blogs/resources for a very sensitive soy allergy. We're talking can't cope with "shared facilities" warnings and seemingly reacting to things that are contaminated but not labeled as such, meaning the traces are below the legal limit for labeling requirements.

As an example of the kind of thing I'm hoping for, for corn allergy there are several forums and groups where a ton of good information can be gotten:

Delphi Avoiding Corn Forums: http://forums.delphiforums.com/avoidingcorn
^^ frequented by very sensititive corn allergics who have been doing the corn free thing for a long time.

https://www.facebook.com/groups/cornallergy/
^^ 900 people and counting, so lots of noise, but also a lot of responses to questions

And then here a number of blogs by those who are crazy sensitive to corn with all kinds of good info on the "basics" of surviving corn free.

It's my friend who's allergic. I am somewhat soy sensitive but it doesn't seem to be that bad compared to corn for me. The Facebook Soy Allergy board doesn't seem to have a lot of people on it. I'm hoping there is somewhere on the net, somewhere, where soy allergics are all talking to each other, but Google isn't bringing it up. Anyone have any leads?

Thanks!
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Comments:
[User Picture]From: sammason
2013-05-10 04:40 am (UTC)
Yes, it sounds that way. I'm no doctor though (well not the medical kind - my PhD was in another subject), anyway, some doctors have weird blind spots. Apparently IBS is notoriously under-believed.

My excellent GP tested me for coeliac, at my request, and of course it was a relief when the test came back negative. But then the GP referred me to a gastroenterologist and I politely declined that offer. I already knew that I have multiple sclerosis. I'd already been through a series of referrals to specialists who examined their speciality parts of my body before saying, 'You seem to have multiple sclerosis. How interesting! Keep coming back so that I can watch you.'

The person who helped most with sorting out my IBS was a dear friend who'd worked for years in wholefood retail. Thanks to her, I learned what to eat and not eat. A few years later another friend, who has MS like mine, mentioned bowel symptoms like mine. Then I googled IBS and found the National Health Service website about it, which reads as though it was written just for me. Oh the joy of having a name for what's wrong! No longer needing to describe it as just my personal weirdness, no longer apologising when I refuse the delicious-looking foods people offer. Most people have heard of IBS, most people know somebody with IBS, so the conversation can move easily to my clear statements of what I can and can't eat.

Oh I'm sorry, I've hijacked this thread which was meant to be about your allergy.
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[User Picture]From: becala
2013-05-10 04:43 am (UTC)
Actually the original post was about someone *else's* allergy, so it doesn't matter! My allergy, while severe and sensitive, is handled. Or at least as handled as it's going to be without a robot body. And I'm very interested to hear about your journey anyway. :)

So I know certain muscular conditions can cause reflux issues, does the MS actually cause the IBS, or are you just lucky enough to have both randomly?
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[User Picture]From: sammason
2013-05-10 04:56 am (UTC)
Thank you for asking. I think my IBS is part of the unlovely MS. MS is known to affect the bowel but it's not well understood. My neuro and my specialist nurse have given practical advice.

Edited at 2013-05-10 04:57 am (UTC)
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