Alternative Sweeteners

     This is kind of an unusual post, because it's basically a copy and paste. My sister-in-law posted on Facebook yesterday asking if anyone had suggestions for sweeteners to use in place of sugar.  Since this has been part of our cooking adjustment, Brittany tagged me and asked for my input.  I ended up typing up quite a bit of information, so decided it was worth copying and putting here on the blog, as well--instead of pulling out another post on sweeteners at some point over here.

    You can find sugar that is corn free, but in Brittany's case it showed up on her testing as something she needed to stay away from. Further down in my comments I list known corn-free brands. I'll start with Brittany's response to my sister-in-law, and follow with what I wrote.  This certainly isn't the end-all on sweeteners, but this is what has worked well for us so far.  I do also use raw, grade B maple syrup on occasion.  I didn't mention brands for agave or sucanat, so I'll mention here that for agave I get Madhava light; for sucanat I get it from the bulk section of my health food store. Not everyone is comfortable buying from the bulk section, but at this store I have had good success with their sources.  If you tolerate Madhava agave, the nice thing is that you can find it at Walmart.

    Here's the post:

    Brittany:  Mom (Heidi)?  We've used a few.  We've also used coconut sugar for a few things (it's rich and expensive, so that's why only a few, haha).  It upsets me if I used it too often - but it's better than the typical processed sugar you'd get at a store.  You might do alright with coconut sugar if it's the processed sugar you've been using up until this point.  I can't remember what the other stuff we've used is called though.

    Me (Heidi): WE don't use sweeteners very often, but when we do we usually use raw, organic honey.  There are a few others I keep on hand--agave nectar, stevia and sucanat.

    When we use agave it's usually for making coconut ice cream, or if I'm baking a cake Brittany can eat and I want a lighter texture than what honey gives.  Pure Stevia (Do NOT use Truvia; it has so much crap added to it; I buy SweetLeaf from Good Earth) is a great natural sweetener. I mostly use that in powdered form if I need to do something like sweeten fresh berries if they're too tart.  A little goes a long, long way so you need hardly any.  I think for a smallish mixing bowl of fresh fruit I might use about 1/4 tsp.

    Sucanat is basically raw sugar before anything is done to it once it's removed from the cane; all the molasses is still intact.  I use this very little but keep it on hand for times I would normally throw a little brown sugar into a recipe, like a couple of tablespoons into curry or the mango coconut chicken sauce that we like to eat over rice.  I've ground this up with a small coffee grinder to use as a powdered sugar for frosting.

    Xylitol (XyloSweet is derived from birch) is another good natural sweetener, but you want to be careful how much you use in a sitting because it's a natural laxative.  So, for instance, if you make brownies only have one or two small ones in a day kind of thing (yeah, I know, what regular people do anyway--but for people like me who have the capability of eating half a pan. . .ya know. :) )  Brittany liked using a little of this with cinnamon on her oatmeal back when she was still eating oatmeal and before I freaked out when I found out some xylitol is corny and chucked the bag into the trash.

    Something you might want to look into regarding why pure sugar disagrees with you is that most commercial brands add cornstarch to granulated sugar to keep it from clumping; this is not required to be reported in the ingredients list if it's "used in processing."  As of now, the only companies whose granulated sugar is corn-free are C&H, Domino's and Whole Food 365 brand.  This goes for powdered sugar, also.  It might just be that sugar disagrees with your gut, but if you want to test it out, those are the specific brands you can be assured aren't cross-contaminated.

    Coconut sugar, as Brittany mentioned, is very rich and expensive.  I bought it because a recipe I was trying called for it.  It is really good, but I only use it on the odd occasion.  A lot of people who use it do it for the brown sugar taste, but sucanat is much healthier and serves the same purpose, really.

"Gentle!"

In writing about the success we're seeing now and with that, going over some of the "incidents" we've dealt with over the past few weeks, it got me to remembering a scary incident that happened last May that is actually kind of a funny memory.  I decided I want to share it, because it illustrates the depth of strength my daughter has.  She entered the world that way, and has allowed her trials to forge even greater strength from within and channel it with grace and humor.

One Saturday my husband took Brittany up the canyon to walk the paved trail at one of her favorite sites. While they were there someone passed them on skateboard, smoking a cigarette.  The result was her legs giving out on her and my husband having to help her to the car.  By the time they got home he had to carry her into the house.  This was shortly after she started having reactions that numbed and paralyzed her limbs for periods of time.  When they came in they said she couldn't feel or move her arms or her legs.  By the time this had happened, we had had so many incidents where she accidentally got corned, either from us not realizing it was in something she was eating or not making the connection between corn and aerosols/cleaning products, etc. or from someone walking by heavily perfumed or smoking, etc. that it was just one thing after another.  My husband sat her on the couch and then sat a can of coconut water on the coffee table in front of her as a joke.  I said, "What are you doing?" and he said, "If she wants it bad enough she'll get it."  I was so exasperated, but I think we were all so tired and frustrated by this point that we all started laughing.  Brittany said, "That is so mean!" but she was laughing, too.  My husband got the can to help her drink it and she ended up with too much in her mouth so it was dribbling down her face and because she couldn't move her arms she couldn't wipe it up.  That started more laughing. . .and then, she tipped over sideways.  Since arms and legs wouldn't move, she couldn't do anything about it.  My husband went to pull her back up and she said, "Gentle!" mimicking Wesley on the movie The Princess Bride.  We were all laughing so hard we could hardly breathe, and I was sitting there thinking, "I can't believe I'm sitting here laughing at my daughter when things are so horrible," and then she started cracking jokes about being a ventriloquist dummy.  We were laughing so hard we were crying, the whole time thinking how horrible it was to be laughing at her, but she was the one cracking the jokes about the situation.  I was completely in awe.

You hear all the time about how trials can make you stronger and can refine you into being a better person.  I have watched this happen with Brittany through this entire process.  We refer back to that night a lot, and she has said that at that point it was either cry or laugh.  It really is a choice.  She could have been angry and bitter throughout this whole process about a great many things, but instead she has allowed her relationship with God to grow as she has turned to Him during times of special need, and that sense of humor has blossomed and grown, as well.  Something else that I have marveled at, as well, has been the concern she has shown for others.  She has noticed when others are hurting emotionally or sensed when someone needed a boost, and found ways to fill those needs, even with how limited she has been in what she has been able to do physically.  There have been times as her mother when I've felt very frustrated at how lonely this whole process has been; she has felt it, as well, but has chosen to not dwell on those aspects.  As a result of how she has chosen to handle this trial, she has grown in so many beautiful ways.

One day a couple of years ago, before we figured out what was causing all the pain, I was having a really hard time emotionally.  Answers were slow in coming and we were basically living in doctors' offices, hospital testing appointments, chiropractor visits, the pharmacy--and when those things weren't going on it was really hard for her to even be out of bed because the pain was so intense.  We were sitting in the family room and I said, "If Jesus were here, I'd be the first in line to ask Him to heal you."  Without even missing a beat she looked at me and said, "There are other people who need it more than I do."  All of a sudden I had this clear image in my mind of her being in that situation and seeing someone with a more obvious physical disability and stepping aside for them and countless others to go first.  And I have no doubt that that is what she would have done; she is that kind of person.  I wept, not just out of sorrow for what she was going through and frustration that nothing was working, but out of awe.  I feel truly privileged to be the mother of this noble young woman who has such great love for others.

Being on this ride with her has taught me so much.  As mothers, it is often our job to "fix things."  No matter what we tried, I couldn't fix this.  When you find yourself in such a place, all you can do is wait on God to see what His will is, and make the most of each day as it comes.  Darker times than the one I described above came later, and I watched Brittany indeed make the most of each day.  Sometimes her one thing was waiting for the sunrise after being up all night so she could "watch God paint," as she put it.  She would take such joy in that experience, capturing it on her camera and letting herself feel God's love for her.

Sometimes I don't like God's timing, and I'm not very gracious about letting Him know that.  I certainly have not been crazy about His timing with this whole experience.  I am seeing, though, that He knows a lot more than I do, and He has made it very clear that He has a specific plan for her life.  At one time when I was feeling particularly anxious about the situation I felt the words, "I got this," come to my mind.  I didn't choose to let those words comfort me in that moment the way I could have.  Instead, I pretty much sassed back and said, "Really?  You got this?  Have you SEEN this?. . .'cause in case you haven't noticed, this isn't going so well."  (I'm pretty sure that when I pass to the other side I'm going to have a "Heidi, step into my office," moment.) Along with the words that were given to me was the feeling that I had done everything I could do up to that point and that He had it from there; if I had chosen to, I could have taken it as a "watching God paint" moment. Even though that's not how I chose to take it immediately, He chose to be patient with me and has taught me through my daughter's example what I can choose to do with my trials.

I'm learning that joy is a choice.  It's not something that magically comes along at some point after you've suffered enough, and then suddenly everything is all better and you are given joy.  We can learn to live joyfully regardless of our circumstances, and reach out and embrace each moment we are given to the fullest.  Learning to live day to day is a good idea in a lot of ways, even if you're not dealing with overwhelming trials that force you to make that choice or not.  It's a beautiful way to live.

Success!

    Ha!  Bet you thought "success" was referring to the ranch dressing recipe.  Nope, but I'm working on that today so it's not "throw some of this together and it should taste pretty good."

    No, "success" refers to how things have been going this past month in reference to Brittany's health.  It is such a good feeling to be able to say that after such a long time of being on high alert, alarming incidents, finding out that yet another thing was making her sick and having a 20-minute venture outside the house end up in disaster.  You hear that saying about living one day at a time, and trials like this teach you how that works.  All you can do when things are so intense is live in the now, maybe only living moment to moment because that is literally the only thing you have any control over.  And I can't count how many times I had to give moments over to God when I didn't even know what to do (some of those moments came around 2:00 or 3:00 a.m.).  It's amazing how He has carried us through all of this, often bringing things to my mind to do that I would have never thought of.

    One of the problems that the corn allergic are faced with is that medicine and medical/hospital procedures are loaded with corn derivatives.  So when one becomes sick or is dealing with an emergency situation, you really do have think twice or three times before running to the emergency room.  The adhesive on bandages is corny, IVs are filled with glucose, pills have cornstarch in them to hold them together (gel capsules have glycerin, also usually derived from corn) and usually have three or four additional derivatives in them.  Not to mention cleaners and others agents used to sterilize.  They all have derivatives in them.  It's a minefield.  And if your symptoms are scary enough that you carry an epi-pen you have to really evaluate whether or not it's worth it to use it because when you use an epi you HAVE to get to an ER for further treatment.  Epi-pens are for life-threatening situations, but if personnel at the hospital won't listen to what you are trying to tell them about the allergy and insist on doing what they are familiar with they can make things worse.  It can be a really scary situation.

    One of the solutions is to have medications compounded free of allergens.  In Brittany's case, the doctor has to write ON THE PRESCRIPTION PAPER, "to be compounded corn, wheat, dairy and soy free."  And then you need to be prepared to make your case at the compounding pharmacy, derivatives list in hand (there are 183 by the way; I counted them), as you inquire what the capsules and fillers are made of.  "Veggie caps" sound really good to most people, but that is a red flag for the corn allergic because--guess what--the veggie of choice is usually corn.  Most people don't even have to give a second thought to what the vegetable content is.  Our compounding pharmacy has been great for the most part and we finally got things down to a groove with getting Benadryl compounded in clear gelatin capsules (the ones with a white stripe were a no) with only the active ingredient.  They were so nice about it, but when I realized that not having an inactive ingredient to add to it makes it more time consuming I started bringing our own tapioca starch.

    Even with a compounding pharmacy available, I learned the hard way that not all medications can be compounded.  So I found myself in the position of needing to learn natural/home remedies to treat common illness symptoms.  I found that by catching symptoms as soon as they started we could usually kick the illness within a couple of days, and sometimes within hours.  I've learned the value of essential oils and knowing how to use them, colloidal silver, various herbal teas and one of my favorites, mixing equal parts cinnamon and honey for flu and fever (boy, does that one work fast).  So now I am a proud card-carrying member of the "crazy" population who rarely goes to a traditional doctor.  I don't hate doctors.  They just can't help my daughter most of the time because of her situation.  And the cool thing is, we are healthier in those regards than we have been in years, and I have been able to treat what has popped up successfully at home.  It's awesome.

    That rant was the circuitous route to me just simply saying that things are finally better.  When we first found the forums online that helped us figure out all the places corn was hiding, people told me to be prepared for increased sensitivity as we got the last of it out of her system.  Yeah, buddy--I had no idea what we were in for.  After a little honeymoon period of her doing gloriously better it seemed like she was reacting to everything. Once her body got rid of  those last traces of corn, it was on high alert.  Now, with the help of methods used in natural medicine, her sensitivity level has gone down significantly and her recovery time when she does get a more serious accidental exposure has gone from about a month to her still being able to function pretty well the next day.  Here are some recent examples that have driven it home how much better she is doing:

    After not daring to enter a movie theater (translation: POPCORN) since seeing Transformers 3, we went and saw The Hobbit about three weeks ago.  The Hobbit was the one movie Brittany dearly wanted to see in the theater when it came out, and even when other movies looked appealing she would say she was saving up and that was the only movie worth braving a bad reaction for.  When it came out, things were just too fragilly balanced and easily disrupted to risk it.  My husband and I went and saw a movie several weeks ago and I noticed that The Hobbit was down to one showing.  I suggested we take Brittany if she felt up to it before it hit the dollar movie theater, because this theater is newer, bigger and not nearly as saturated with popcorn residue and airborne stuff.  She won't go near the dollar theater.  We bought tickets in advance for the following night, spoke to the manager following our movie and explained Brittany's situation, asking him if he would be willing to let us enter the theater through the back doors so she wouldn't have to deal with the concession area with the popcorn machine.  He was great about it, gave my husband his card and said to just call him when we got there and he'd take care of it.

    Originally we had thought the best game plan would be to go on a really random day of the week to the first showing of the day, where there were more likely to be fewer people and no popcorn being popped.  But we ended up going on a Saturday night and the only showing was at 6:30.  Brittany wore one of her masks (the one made specifically for people painting to help with paint fumes) and we went.  We were able to stay the whole time and she loved the movie! I have to admit that I was watching her as much as I was watching the movie, both watching for reactions and wanting to see her enjoy it so much.  She did have a headache, but it wasn't nearly what it would have been once upon a time.  When we got home we had to do some damage control using quercitin, benadryl and bentonite clay.  I thought for sure she wouldn't be able to function the next day (one of the scariest symptoms has been numbness of the limbs and her legs giving out on her), but she got herself up without help, cooked a lot of her own food, and was able to move about pretty well for the most part.  It took a few days for her to feel up to about where she was before the movie, but she said it was worth it. :)  Once upon a time, we couldn't have even considered setting foot in a theater; the consequences would have been too dangerous and it would have been a guaranteed 3 weeks to a month of recovery time where any little exposure would have a serious effect and make things worse.

    This past week we had two incidents happen within two days of each other that had me saying some naughty words and wanting to kick something.  The first one happened at the end of an otherwise wonderful day on Friday where Brittany was able to leave the house and we did shopping for a few hours, running errands and looking at shoes at the mall.  We ended up at Walmart for a few things, and as we were getting ready to finish I decided I wanted to get some new bathroom towels.  I picked up a couple and put them in the cart, then had the thought come to me that we should muscle test (I will do a posting on muscle testing at another time; very valuable tool to have) to see if the towels were safe for her to use, since corn fibers are being starting to be incorporated into fabrics more and more.  I'm pretty good at muscle testing but occasionally miss something, but Brittany is failsafe at it.  So I handed her a towel and asked her to test if it was safe for her to use.  Turns out we didn't even need to muscle test; the second she touched the darned thing her hands turned red and she had a rash working its way up her arm.  My immediate thought was that we needed to wash her hands so rushed her to the bathroom, where it got even worse because they had just cleaned it and the chemicals they use there are so highly fragranced (fragranced anything contains corn derivatives; room fresheners are a nightmare, as well as cleaning supplies and perfume).  I got her to the shoe department to sit down because by then she was pretty wobbly.  I said many naughty words during the course of this whole thing--I was so mad, because until I had her touch the darned (or naughty word) towel she had been doing fantastically well.  Mad at the situation and mad at myself for not having the presence of mind to test the towels myself in the first place, and mad at myself for failing to remember how smelly their bathrooms are.  Brittany will confirm that I probably scared a few people.  I was afraid she wasn't going to be able to walk out of the store, but a few minutes later she said, "Let's go; I'll be fine."  As we were walking she told me she had quietly said a prayer, and she could also feel some adrenaline going to work.  We made it through the checkout and to the van, where I texted my husband to be ready for us when we got home because he might have to carry her into the house.  The adrenaline let down once she got settled in the van and she started to fall asleep; it scares me to death when this happens because there have been a few instances where her blood pressure and heart rate have dropped suddenly as a reaction and I've had trouble waking her up.  My husband got her into the house and I thought that was it for the night.  He got her settled onto her bed, and--30 minutes later she was up!!!!  She stayed up for a few hours, ate dinner and really did pretty well.  I thought for sure she was going to be out of it the next day, but she was up and about before I was.

    The incident that happened a couple of days after that was on Sunday.  We hadn't had a roast for Sunday dinner for several months, so I got one Saturday night from Sprouts.  We have to be very careful with meat; aside from the issues of what the animals eat and whether or not they are raised on antibiotics and hormones, there is also the issue of how they are washed after butchering.  Most commercial meat is washed in solutions of lactic and/or citric acid, and the majority of those used commercially are corn derived.  Two summers back we purchased ground beef, roasts and round steaks from a local rancher after verifying safe processes, and that was a very good experience.  Once that meat ran out, though, I was fortunate to be able to identify some meat at Sunflower Market, which was then purchased by Sprouts.  Their 100% grass-fed beef from Uruguay, not only the ground but the cuts, as well, has been a great experience.  The only caveat has been that I can't buy what's already packaged because of the soaker pads that are in the bottom of the meat trays, because they are soaked in citric acid.  Their customer service has been amazing, and they have been willing to cut the meat from the back and package it without the pads.  We've done this so often that they know me on sight and usually know what I want before I even say anything.  It's been such a consistently good experience that I didn't think to muscle test or double-check what the labels said.  Brittany had a horrible reaction to it on Sunday, and I realized that it didn't say "from Uruguay" anymore, so they must have switched suppliers.  Something with the processing before they get it makes it unsafe for her to eat, so I won't be able to buy it there anymore.  This reaction was very sensory; I could tell she was getting agitated and hyper-sensitive to noises, etc.  She had trouble focusing and hearing what people were saying to her.  This type of reaction is what I've seen other corn allergic people refer to as "my IQ drops several points."  It's miserable.  Once I cued into what was going on we pulled out the Benadryl, quercetin and coconut water.  Again, I thought this would mean backtracking to how recovery time has been up until so recently, but she pulled through it pretty well and was up at a normal time the next day.  She has had to take it easy, but she's been able to function.

    So that is why I titled this one, "Success!"  Success because she's not flattened.  She was feeling so good yesterday that she exercised and overdid it.  THAT is awesome.

Back From Hell

    My apologies to anyone who has tried my blog thinking they would get lots of new survival tips, because AS YOU CAN SEE, I disappeared off the blog grid for about a year and a half.  Truth of the matter is, everything got way, way worse until it got better.  It only got better about a month ago. Thus the sailor-language title.

    What prompted my return?  My triumphant recreation of creamy ranch dressing, that's what. I pulled it off last night, had happy dreams and have been dancing all day. I think I must share this with the world, because  pulling off creamy ANYTHING when the allergies include both dairy and soy is something beautiful to behold.  I don't have an exact recipe yet because I just threw stuff together until it tasted pretty familiar to those beautiful Hidden Valley Ranch days when we didn't know that prepackaged mixes were killing us. So, I will work on it and post the recipe!

    Facebook has been my survival tool for the time I've been gone. There is an incredible corn allergy support page there that has been a lifesaver more than once, even if for only screaming and pulling my hair out to people who understand. I've also been blessed to be linked there with good friends from throughout my life who have been cheerleaders when we've had a victory.  Sometimes that's been some of my only interaction with the outside world, apart from doctor visits, shopping for food, and church when I can make it.  I'm not even kidding.

    When I first started this blog I thought I could share with people what we learned along the way, but the truth is, I was so overwhelmed with the huge learning curve I was on that half the time I felt paralyzed.  Between that and handling some very scary allergic reactions that took lots and lots of recovery time, I didn't even know where to start posting. I think that now I'm up to it, though, and hopefully this can become a meaningful resource.  My daughter pointed out that I have over 1,400 page views and I was both shocked and felt bad that there hasn't been more here to offer. So please, bear with me and stay along for the ride.  Who knows You might enjoy the zany humor we've developed around here along the way, as well as learn  some things that will help.

    One thing that has really hit home to me from our experiences is that corn allergies are not understood the way they need to be yet, and they are still discounted by the majority of people as being as serious as they are.  I have to tell you, though, just from the swell in numbers we've seen on the Facebook allergy page, I feel strongly that this is going to be the next "big one" in America as people finally figure out the root to so many of their health problems.  And we, as people, have to be our own advocates because the medical field still doesn't get it. The allergy specialists don't even understand it. I've been in the position of having to stand my ground with professionals who didn't want to hear that a simple Mom might know more than they did about something, and if I hadn't my daughter would have died.  Simple Mom intuition, I have learned, is one of God's greatests gifts to women. I never doubt it anymore. When I get a nudge I follow it, whether it makes sense at the time or not, and whether or not anyone around me agrees or thinks it makes sense.

    Okay.  Rant over.  Hey, this feels good--stay tuned, because I have a feeling you are in for a lot more as I tell more of what the past year and a half has brought.  It's been a crazy, insane, scary and yet in the end exciting journey as we have made discoveries and learned more than we ever thought we would about so many things.

    Recently at my church, our women's group had an activity where they wanted people to bring or talk about something they accomplished during 2012.  I wasn't able to attend the activity, but I told my husband that if I were to go, I was tempted to bring my daughter's picture, hold it up and say, "2012 is the year I kept my daughter alive."  Nuff said.