Let's talk about it!

In the past few weeks I've received a few emails from people just starting out on their corn allergy journey. While I don't wish a food allergy on anyone, I do get get the fun of sounding like a grumpy old timer.  I like to fire up the Commodore 64 and reply, "Back when I was diagnosed, there wasn't anything on the internet for people with corn allergies. Just advice from the allergist on not eating popcorn and corn chips! Get away from that processed food before you drop dead."  I usually like to follow up such sage comments by putting on mom jeans, black socks, brown sandals and yelling at those darn kids to get off my lawn.

In the interest of being a good corn-free citizen who has survived an entire decade with a corn allergy and is now enjoying a large corn-allergy and corn intolerant community on the web here are a few good spots to hang out while figuring out how to live a corn-free life.

Facebook:
Corn Allergy and Intolerance Group  https://www.facebook.com/groups/cornallergy/
I recomend this group as an interesting place to start for people with either a corn allergy  or intolerance. Lots of people with different levels and types of reactions and good discussions. The group varries from people with a strict scientific testing perspective to people who are willing to try anything labeled a cure so there are lots of interesting discussions. Very friendly and helpful members who share info and support one another. The majority of very active posters are from North America, but there are members from across the globe.
Some group jargon that will help you communicate and understand a typical phrase that would be put at the end of a post about a product. If I posted saying something was safe for me, I might write: "I am a swift reactor to contact, inhalation and ingestion, only allergic to corn. I'm corn free, I can't do corn-lite at all!"

 Corn Lite: You can eat some foods that are cross contaminated with corn in the processing or have a small amount of corn derivatives and are either ok or willing to put up with the discomfort. Mostly people with a food intolerance or a non-anayphyactic allergy.

Corn Free:You (try to) avoid all corn containing products. Usually due to severe allergies and/or anaphylactic reactions.

Reaction Levels: immediate or swift reactor  vs slow or delayed reactor -- this is the amount of time it takes you to develop symptoms to exposure to your allergen, it can be min. for an allergy or much longer in the case of food intolerances.

Sensitive to: Contact (skin), Inhalation (fumes/dust), Ingested (food)

Corn Allergy Awareness https://www.facebook.com/groups/60220625854/
Smaller group, more focus on Canadian products but lots of cross over with the Corn Allergy fb group. Same friendly and helpful vibe as above.

Corn Freedom https://www.facebook.com/pages/corn-freedom/264504334407
Take this page with a grain of salt -- this mom w/ a corn allergic or intolerant child is interested in advocacy, which is great, but is at the beginning of her food allergy journey and IN MY OPINION still is eating/feeding a lot of corn intensive products and mistakenly promoting them as corn free. It may be that her child is able to tolerate corn lite foods, but she sees them as corn free -- it is a typical part of the journey and she is getting more comments from people with more experience w/ corn allergy.  As with any food recommendation -- use caution. More interesting to watch than to participate in for me.
 

Good FB Info pages -- not all corn specific

Corn Free Foods List https://www.facebook.com/CornFreeFoods NOT all corn free, many products are just low corn/corn lite and are tolerated by people with a corn intolerance and need to be tested CAREFULLY by you! There are only 4 safes thing for me on the the entire list, so proceed with caution. This is a good place to start if you are trying to find safe foods, but may foods on there need to be retested.  There is a visual Pinterest board maintained by fb folks that is a little more up to date -- http://pinterest.com/stripeysocks/corn-free-visual-the-list/ Assume EVERYTHING is corn-lite and test carefully. It is a good starting point but don't assume that anything is totally safe for you.

Asthma and Allergy Foundation https://www.facebook.com/AAFANational  Good info feed.

Team Anaphylaxis  https://www.facebook.com/pages/Team-Anaphylaxis/159511227477594  Mostly focused on advocating for children's issues, good info for communicating about threatening allergies.

Food Allergy Mom Doc https://www.facebook.com/FoodAllergyMomDoc  Interesting and thought provoking posts from a doc w/ two allergic children.

 American Academy of Allergy Asthma and Immunology https://www.facebook.com/AmericanAcademyofAllergyAsthmaandImmunology 
Good info on current research for people w/ a science background.

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Outside of Facebook
Avoiding Corn Forum on Delphi -- http://forums.delphiforums.com/avoidingcorn/start  The long running, sprawling and full of info forum. There is talk of the hosting platform transferring to a more usable format for mobile devices.

You are not alone! Feel free to send me an email (cornallergy at gmail (dot) com ) and go connect with some of your peers.

All in the Family?

In getting ready to go to my cousin’s wedding, I sent her an email about bringing my own food to the reception, since I wanted to enjoy the wedding and not have any drama with an allergic reaction. I had not kept anyone up to date on how severe my allergies had become and was worried that they would try to accommodate me with a special meal when all I wanted was to bring my food so that I could safely enjoy their special day. Her emails back to me were quite a surprise. I’ll let you read for yourself...


From: "Corn Allergy Cousin"
Subject: Re: wedding
To: "Bride to Be Cousin"
Date: Wednesday, July 2, 2008, 7:25 PM

Hi B,

Our RSVP is in the mail and we are planning to attend!!!! We wouldn’t miss it for the world.

Please count us in and put A. down for the Prime Rib selection. As for me, I sent a note about my menu issue with the RSVP and have been planning to call your mom about this as well, but haven’t had 5 min, to myself lately. With my corn allergy, which has become really severe, I was hoping it would be okay if I brought something that I knew was safe for me to eat so I don’t chance having a reaction during the reception.

I spent some time researching the best way to handle this and found that most people with food allergies and either asked the catering staff to put it on a plate for them so it is served with everyone else or just have an empty plate at their seat and serve themselves. This corn allergy is so crazy, it is much safer for me to just take my own food. (You would not believe the stuff that corn is in, like regular table salt!) Please let me know if this is okay.

Love,
C

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From: "Bride to Be Cousin"
Subject: Re: wedding
To: "Corn Allergy Cousin"
Date: Thursday, July 3, 2008, 4:14 PM

Hey C,
I'm so glad that you and A will be able to attend. That is no problem; let me know which way you would prefer so I can email my wedding coordinator at the club. I don't want you to get sick and not enjoy yourself.

I was telling your dad that I have a lot of stomach issues and it makes me wonder if I'm not allergic to something too. It seems to run in the family because M. [note: my younger brother who is gluten intolerant] has a food allergy too.

Sometimes I feel like I have an 'attack' of some sort and I’m doubled over in pain. Recently I had an ultrasound done on my gal bladder and I am scheduled for a scope of my stomach this month. Which I had before and my problem was not solved. I asked my allergist a while ago about a possible food allergy. I'm surprised my stomach Dr. never sent me for testing.....oh well....

Well, I'm glad that you and A. will be at our wedding!!! Just get back to me ASAP about how you would like to be served dinner. Also, I know you will be traveling far, so you are more than welcome to refrigerate your food at my house during the ceremony and I know that all of the hotel rooms have a fridge.

Love,
B

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From: "Corn Allergy Cousin"
Subject: Re: wedding
To: "Bride to Be Cousin"
Date: Friday, July 4, 2008, 7:26 AM

Hi B,
Thanks so much for being so understanding and helpful, food allergies are a pain. For serving dinner, I’d like to do whatever is easiest for the caterers so there is a minimum of hassle and fuss. I’ll bring something simple in an insulated bag with a ice pack and keep it easy to deal with — I just want to avoid a reaction on your big day!

I didn’t discover my food allergy till I had trouble breathing from a reaction, but my allergist and I think I have had it at a low level my whole life since I used to have horrible stomach pain and headaches several times a week ( I never left the house without Tylenol & Tumms) as well a odd bouts of dizziness. Now that I don’t eat corn or corn derivatives, I don’t have the headaches or stomach pain anymore.

My allergist suspects that my mom, and maybe Grandmom too, may have had low level food allergies since the three of us were always hitting the Tumms for our “bad stomachs” but were probably self medicating for a sub-clinical allergic reactions. Try to avoid being allergic to corn, since it is in everything from perfume to wax on fruit and is a real pain to avoid! I’ve gotten more sensitive over time so now I have to carry epi-pens and be very careful, it is considered a life-threatening allergy.

One thing that was helpful for me was to keep a food diary so I could track what I reacted too, but it took a combination of the skin tests and the food challenge diet (you eat just one food family for 3 days to see if you react to it) to determine what I was allergic to — but we got several false positives because of cross contamination with corn and for a while we thought I was allergic to corn, dairy, wheat, nightshades (tomatoes, potatoes, peppers), rice and apples but that was due to cross contamination from corn during the test.

I have WAAAAAAAY too much information on food allergies and testing, if you need more. Are they doing the scope and a biopsy to check for gluten intolerance?

We can’t wait to see you!
Love,
C
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From: "Bride to Be Cousin"
Subject: Re: wedding
To: "Corn Allergy Cousin"
Date: Friday, July 4, 2008, 10:37 AM

OMG! So I'm NOT crazy!!! I have trouble breathing too at times after eating AND I always have headaches AND I have had small dizzy spells. Everyone thinks I'm crazy and “it's all in my head.'' My purse is loaded with Tums and Advill too!!!

I'm going to tell my doctor about the family history, I had no idea. Hopefully this will solve it. I THINK they are going to test for food allergy. I have been trying to eat some organic foods lately thinking that I may react to pesticides non-organic foods have.

I will talk to my wedding coordinator about your meal. I will see if they will plate it and bring it out with the meals at your table. Thanks for the info! Talk to you soon

Love,
B
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From: "Corn Allergy Cousin"
Subject: Re: wedding
To: "Bride to Be Cousin"
Date: Saturday, July 5, 2008, 6:00 AM

B—you are SO NOT crazy!! We need to talk! Our symptoms are so similar and I hope I can save you some time with a diagnosis if we have the same issue! (I really hope you don’t have a corn allergy though, it sucks!) If you have trouble breathing after you eat, your allergist needs to take this very seriously! Do you have Benadryl? It is a good idea to carry some in case of a serious breathing problem!

I eat mostly organic food since I react to the trace amounts of corn in pesticides. Call me when you are free, my cell is 555 867-5309 What is your cell #? We can talk tomorrow.

Some other problems that had just shown up in the years before the diagnosis were severe joint pain and needing to nap after eating, I don’t have these problems anymore either. It got so bad that I would feel drugged if I ate something that had corn syrup in it, like cake with frosting, so I thought the problem was sugar. When I was in grad school I actually went sugar free for a few months, till I had a cookie at a Thanksgiving dinner!

Love,
C


*********
The wedding was amazing, more about that later, but at the reception I discovered that another cousin's 15-month old baby has a severe dairy allergy. This is all on my mom’s side of the family. Just 7 years ago none of us knew a thing about food allergies.

We talked about her taking some Benadryl on her honeymoon, just to be safe since they are going to the food paradise of Italy. But, on the good news side the breathing difficulties after eating may be due to newly diagnosed hiatal hernia, which can be treated. So, I hope that our common symptoms don't indicate allergies after all, but they are so similar I still wonder. She is going to talk to her allergist about food allergies as she has had some other issues with breathing and I think some swelling of her tongue, so I hope she will find out soon.

I'm Ready For My Bubble, Doctor

Good grief. I thought I had reached the limits of absurdity in reacting to the river & tap water in Colorado. But no, that would be too easy. I now can provoke my typical allergic reaction (swollen lips, throat, itching...) by going into a room with a lot of chemical fragrances. This is really beyond the pale. Here is the the scenario:

Thursday: ran out to the car in the rain, stopped to pick up a friend who was walking home in the downpour. Drove about 5 blocks with her. I opened the windows so that all the perfumed lotions etc. she was wearing would not give me a headache. Drove 5 more min. to cafe to meet A. I was getting the reaction warning of tingling in my lips, but ignored it because I had not had anything to eat or drink for several house, so it could not possibly be a reaction. Yeah. Right.

When I sat down, A. looked at me and said "What happened?" I was getting Elvis lip (right top lip puffs up faster to give me that lovely look.) I chugged some benadryl and we tried to figure out what had gone wrong. The only things I was exposed to were rain and perfumes, none of which I ATE. So we just chalked it up to a delayed reaction (I typically react w/in .5 to 20 min after exposure), and didn't think more about it.

Yesterday I went to pick up a friend at the car dealership and went into the office with her for about 5 min. There was a strong chemical/fake floral smell that was making my eyes water so I went outside to wait for her to finish up. As I sat outside I was feeling increasingly anxious, for no obvious reason. When she came out, she looked at me oddly and asked if I was okay. I didn't think anything about it till I got in the car and realized that I was getting duck lips. Ugggh. I had not eaten or drunk anything for at least several hours. I did not touch the fragrance sources, and was not directly sprayed with anything. I thought I could drive us home, but I had to pull over and swig down a bunch of benadryl as my throat was getting tight and itchy.

So, what is the DEAL! I'm having my typical corn reaction to something in the AIR?? Reacting to the water is not enough? I've done a little reading on fragrance allergies and the main type is a contact dermatitis, which I don't have. Here is a basic explanation of the physiology of the reaction.

"Irritant reactions to fragrances differ from allergies. In most allergic reactions, the body reacts to an allergen that it perceives as a harmful invader by triggering the cells of the body to release certain chemicals. These chemicals, such as histamines, trigger allergy symptoms.

Unlike most allergens, fragrance materials are not protein-based, and they are generally too small to be detected by the body. Instead, they act as a hapten, binding with proteins in the skin. As they do so, they modify the proteins, causing the body to perceive the proteins as a foreign substance, thus triggering a reaction." http://allergy.health.ivillage.com/cosmeticschemicalsmetals/fragrancesensitivity2.cfm

Arrrrrrrrrrrrrrgh. Do I have to cary a filtering mask with me or only go to open air/environmentally responsible places from now on or just stay home? I can't take benadryl without needing a nap, so I'd rather look like bizarro woman in a mask than be groggy or sleep through the day.

Could I possibly get a new body? Maybe have a brain transplant? I am throughly sick of being sick and sick of being me.

[EDIT: I've done a little more research and a lot of fragrances are carried in a corn alcohol base and as I get more sensitive, I guess I react to smaller quantities of corn. meh.]