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


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.

^^ 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?


[User Picture]From: becala
2013-05-09 03:55 pm (UTC)
Thanks. Good to know I'm not talking to the air here.. :)
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[User Picture]From: sammason
2013-05-09 05:38 pm (UTC)
You're not talking to the air. It's just rather a quiet comm. You'd be welcome on friendly_crips, which I own. I'm in food_allergies because I have Irritable Bowel Syndrome and for a while, I wondered about allergy.
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[User Picture]From: becala
2013-05-09 05:43 pm (UTC)
Interesting. Usually I hear food allergy people say, "I thought I had IBS but it turned out to be food allergies!" rather than the opposite.

Thanks! I will definitely join. I would say my corn allergy is probably severe enough to qualify as a disability considering that I react to airborne popcorn, traffic fumes (ethanol from corn), and other peoples' body products and laundry detergent.
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[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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[User Picture]From: sammason
2013-05-10 04:51 am (UTC)
Would you say that you have Multiple Chemical Sensitivity? I've met a few people who say that they have that, but I don't know much about it.
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[User Picture]From: becala
2013-05-10 05:14 am (UTC)

Well, I *do* say I have MCS to people sometimes to help them understand how reactive I am to airborne stuff, but it isn't true.

It literally is just that corn is in so much, including disinfectants and fragrances and fuel. I don't react to all fragrances, just especially corny fragrances. The thing with a corn allergy is that it's not really a food allergy any more because corn isn't just a food now: it's a disinfectant, a preservative, a lubricant, an emulsifier, a thickener, a polymer, and more. But when you tell people that corn is in *everything*, they either don't believe you or they don't understand that you really do mean everything. My list of foods I can eat currently has 12 items on it, and while there are other food sensitivities at work here, most of that is because of corn.
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[User Picture]From: sammason
2013-05-10 07:13 am (UTC)
How did you find out that it's all about corn?
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[User Picture]From: becala
2013-05-10 01:18 pm (UTC)
I found out about the corn allergy through a scratch test where I tested positive for several food allergies. I found out it's all about corn by eliminating and having symptoms that had never been correlated with allergies or even perceived as symptoms including joint pain, heart palpitations, and difficulty concentrating disappear until corn was challenged. Challenging the other foods I tested positive for yielded no noticeable reactions.

The airborne stuff and the hypersensitivity is new though in the last 9 months. I had a good seven years of a "normal" food allergy, where I just had to not ingest corn or corn products, and I could even get away with some very broken down/diluted corn derivatives during that time. Then at the end of last summer my body started reacting to "safe" foods with angioedema and throat-closing, and life got really fun.

Mastocytosis, MTHFR mutations, EoE, FPIES, and other exotic diseases that mostly only children have have been posited. None have been confirmed. In some part, I haven't pursued it due to not being well enough/having to hold down a full time job. Also for many of those diagnoses there is no particular treatment other than avoidance, steroids, and antihistamines, which I am already doing. The MTHFR mutation is a simple blood test so I'll probably do that. Another problem is that I'm having a hard time finding specialists that want to work with me. The last immunologist I saw seemed to take me seriously, suggested that I have a mast cell disorder, and asked for me to come back in 3 weeks for testing and treatment., When I came back she ordered no tests, told me that she had searched a corn allergy on medline and hadn't found any evidence of such a thing, and told me to take over the counter Claritin, which contains corn starch, daily. If that didn't work she wanted to prescribe prednisone (contains corn starch unless made by a compounding pharmacy) and amitryptiline. Then she shook my hand and wished me "good luck," which I took to be a dismissal.

So I found an integrative GP and a naturopath. The GP gives me compounding scripts for whatever I need (since of the shelf meds almost all contain corn products) and the ND is doing accupuncture to help detox and helping me decide which foods to trial based on nutritional profile, since I am in very real danger of malnutrition. I will get back on the specialist train eventually and try to track down what is actually happening to me, but right now I need to *eat* and *live*.

So yeah sorry, that one-line question opened up a *can*. :D

I'm blogging about it at http://cornallergygirl.com, however I don't really talk about the emotional aspects of the allergy or any of my thoughts on ableism and what it's like having an "invisible" chronic illness. It's just informational because I get the same questions over and over again on the corn allergy groups I participate in, and it's easier to link to a blog post than retype it.

Edited at 2013-05-10 04:46 pm (UTC)
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[User Picture]From: sammason
2013-05-11 04:02 am (UTC)
Your blog is interesting, and sobering. Makes me think 'there but for the grace, go I!' since I'm blessed with a lack of any known allergies.

Also it's interesting to me from a scientist's point of view. I write 'Science on the Land' on WordPress http://argylesock.wordpress.com/ I've never heard of anybody here in Britain being allergic or sensitive to corn (Zea mays, known here as maize). In fact you're the first corn-allergic person I've met. Perhaps people don't often mention it.

I'm intrigued to learn from the 'Beginner's Guide to Corn Free' that you link to, that allergens in Z. mays can be carbohydrates (sugars or starches) as well as proteins. Also to learn about how many products in the States are made from Z. mays. And the suggestion that people may react to genetically modified (GM aka genetically engineered, GE) Z. mays, specifically the Bt maize which produces insecticide.

On my science blog I write a 'Crop of the Month' series which hasn't yet featured Z. mays. Perhaps it should, one of these months. I've been gestating this idea for a while. When I do get around to writing that post I'll link to your corn blog.
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[User Picture]From: becala
2013-05-11 04:52 am (UTC)
Actually the corn allergy groups I'm a member of have a few British members actually, and a couple Aussies. Relatively few. 5-10 active members out of 50+ who post regularly.

Produce seems to be much less messed with there, and a number of derivatives that are always made from corn here are often made with wheat instead. (Of course that's a problem for a wheat allergy.) But it sounds like compounding pharmacies don't exist over there? Which makes finding corn free medications very very difficult. At least here while it costs me a million dollars, I can *get* them if I need them. Mostly. Some can't be compounded due to patents or whatever.

I'm actually not one of the most thorough resources on the allergy, though I'm actually struggling to be. There was a woman who ran a blog called Hidden Corn that detailed the corn allergy hazards about every kind of food. She somehow discovered that corn wasn't her problem (but I don't know what it was and I'm dying to know!) and took the blog down because she didn't want to be responsible for making sure that information was accurate and up to date. I am reconstructing some of it with the "Corn-tamination Series" posts, however I actually talked to the author and she's going to give me her old content, including the reference links, of which she had plenty. I'll probably be putting them up on a wiki type format instead of a blog.
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[User Picture]From: gallian
2013-05-12 04:55 pm (UTC)
I found out it's all about corn by eliminating and having symptoms that had never been correlated with allergies or even perceived as symptoms including joint pain, heart palpitations, and difficulty concentrating disappear until corn was challenged. Challenging the other foods I tested positive for yielded no noticeable reactions.

Substitute "wheat" and you have a good part of my story. (except for the "challenging the other foods yielded no reactions" part - I'm one of the lucky multiple allergy/sensitivity people.)
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[User Picture]From: becala
2013-05-13 12:06 am (UTC)
Oh, I'm pretty sure I have multiple sensitivities as well, just none of them are *quite* as bad as corn. Though sometimes it's hard to tell what is a new allergy and what is just corn again. I was positive I was anaphylactic to coconut for quite some time until other folks from the FB corn allergy group finally started reacting to the products I'd had issues with, and I realized that no, I'm fine with coconut unless it's contaminated with CORN. *sigh*

Confirmed second allergies are to kale and chard. Soy is a definite sensitivity but if it's IgE mediated, it doesn't *act* like it. Adverse reactions for sure, but only to consumption of whole soy products, not traces and not airborne. I am possibly allergic other veggies in the same families as kale and chard such as cabbages, broccoli, spinach, beets, and quinoa (which is related to spinach), but not positive on those as they could just have been corn-taminated. I also MAY be allergic to turkey and chicken, but again, could still be corn. NO IDEA.

Honestly though, just the corn allergy is enough for me. Too much, really. Traces of it are in so many things that I ended up eating two foods for 8 weeks because I couldn't find anything that didn't make my throat close up. And even those two foods gave me throat closing/tongue burning issues, so I had to eat small amounts often.

Oh I'm a celiac too, or at least very gluten intolerant. Never pursued a diagnosis for celiac. I have the gene though.

Edited at 2013-05-13 12:09 am (UTC)
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[User Picture]From: becala
2013-05-13 12:10 am (UTC)
Oops, didn't mean to make the above an "oh poor me" diatribe. I mostly don't feel that way. I'm just constantly mulling over my symptoms trying to figure out causes. It's a full time job really. :)
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