Coping With Allergies Part 2: Working With Your New Restrictions

Note:  You can read Part 1 of this series HERE.

So, now you have found out what your child/you are allergic or sensitive to.  You have your dietary recommendations in your hand, have your pile of print outs from the internet to help you figure out what else contains the allergens you need to avoid.  You have found allergic friends through blogs, forums or other methods.  And now you sit, staring at your kitchen cabinets with your mouth hanging open in a bewildered look that is half confusion and half scream and wondering what to do now.

And so we come to step 4 of the coping with allergies process which is one of the steps that hurts.  And that is this...

The beginning of my "cleaners" purge

4.  Purge the Allergens (if you have to) or Redo How Things are Stored (if you can)

When my son was diagnosed with his garlic allergy, I realized how much garlic hides in products.  Since his garlic and peanut allergy were life threatening, I knew I had to purge the allergens out of the house completely to avoid cross contamination or having him accidentally ingesting something that could potentially send him into anaphylactic shock if I wasn't paying enough attention.  So, I went through my cabinets ruthlessly and just got rid of anything that wasn't safe.  Period.  My family members loved me during this time as they got a lot of free food, shampoos (to avoid the contact allergies that my poor son had as well), cleaners...you name it.  Having been a coupon queen before the allergies hit, this was a REALLY depressing series of events for me at the time. 

Now, my recommendation is that if the allergies you have to cope with aren't life threatening and you are confident that you can keep your safe foods segmented off from the rest of your food, I'd recommend doing just that.  There is no point in getting rid of all of your tomato products, for instance, and only keeping garlic free ones in the house if your child doesn't like tomatoes anyway.  But, you're going to quickly realize that allergy free food tends to be expensive, so you want to make sure you keep that food segmented off, in rodent proof containers and safe from other people accidentally eating it because they are hungry (for instance my son's nut free M&M's cost me 5.00 to 6.00 per bag, so they get special placement and my daughter only gets to eat them as a very occasional treat). 

You have to work within your limitations.  If you are sure you can keep things clean and uncontaminated, you could probably just start buying safe food, keep it separate from the rest of the food and call it good.  But, if you have life threatening allergies or aren't confident in your ability to keep track (like me), you probably just want to get rid of anything you know of as unsafe and start from the ground floor up.

5.  Prepare to Have Your Universe Expand (Literally)

I feel so bad when someone e-mails me or finds me on the street and starts with, "My child was just diagnosed with (this or that allergy).  Where do I find safe food?"

That is a question where you get an awkward smile on your face and have to resist the urge to laugh inappropriately because you know you're about to ruin a person's day.  Because, folks, "safe food"?  It's a relative term.

My children, between the two of them, have various allergies and sensitivities and it seems like it's hard to keep on top of what is "safe" for them to eat at times.  Because, the bad part is that even once you have the list of foods you've found that your child can eat?  It doesn't mean that the food is "safe".  That's the part that just burns allergic parents everywhere.  For instance there was a certain chip that my son loved and ate constantly.  Suddenly he started breaking out from it and I couldn't figure out why.  Turns out that the company started putting a coconut oil derivative in the "natural flavors" section of their product.  So, once I found that out, one more food that I thought was "safe" suddenly wasn't.  This happens a lot, so stay on your guard when it comes to any processed foods!

As for safe food at home.  Prepare for your universe, and pantry, to expand beyond what you thought possible.  For instance, in the case of gluten sensitivity, I watched my old "Flour", "Sugar", "Bread Flour" and "Coffee" containers on my counter-tops  get replaced by; "Brown Rice Flour", "Sweet White Rice Flour", "Sorghum Flour", "Tapioca Starch", "Guar Gum", and "Gluten Free Flour Blend" (which I'm still working on the perfect counter top arrangement for us).  My coffee no longer even had a spot to sit on my counter-tops and other gluten free flours overflowed into my hallway closet (that now functions as a kitchen closet now) and the bottom drawer in my fridge became yet another spot for gluten free flours (mainly it's where I store the almond flour).  The wheat containing flours ended up contained in a certain spot in my downstairs pantry.  And that's just day to day baking supplies. 

Then there are safe snacks.  If you can find ones your child can have and are portable (and that they'll eat...that one I'm still hit or miss with), you quickly find that sites like Amazon.com and Vitacost are your friends.  I buy safe snacks in bulk and the more bulk the better because if you run out of nut free and oat free granola bars?  You can't really go down to the stores around here and buy more.  Run out of baking powder?  If your child has a sensitivity to corn and potato you'd better hope you have a large amount of cream of tartar in your cabinets to make more baking powder or you're stuck. 

When you live about 1/3 of your week in your car/on the go (like us with therapies and such), these snacks become a necessary lifeline and one that I would not do without.

So you quickly come to realize that yeah, your grocery bill just doubled on a weekly basis, but now you're going to have to find room to store a bunch of new things you didn't have to pre-allergies.  And if you're me, you also have to buy containers to make sure those items are in rodent proof containers so you don't lose a fortune should you get a rodent invading your abode.  Consider "safe food" to be a priceless investment that you will continue to invest in for years to come.  If you need to find space, trust me, you can find space in unlikely places (like my hallway closet storage area, or try under beds, in a corner of your master bedroom closet, etc.).

Various things in my Spice Cabinet

6.  Start Small:  How to Start Cooking Safe Foods

When you first have to start actively living with an allergy, it can be overwhelming.  My advice is to make a small list of foods you know are now safe.  Go out and get groceries you can eat.  Even a couple of familiar comforting items will make a world of difference in how you tackle other things.  For instance the first thing I did with my son's peanut allergy was to go online and find treats that he'd eat as I knew that was the thing he was going to miss the most and when I had to tackle the garlic allergy...well I knew that I could cook with shallots, meat was okay, and salt and pepper could do in a pinch until I figured the rest of it out. 

Once you are comfortable that you're not going to starve you can move onto the next step.  Which is then to tackle the problem areas that you realize the store can't help you with.  The easiest way to do this, and really the ONLY way to tackle this is to start small.  Literally.  Find every small minute thing in a recipe, figure out if it is safe.  If it is not, make your own.  And move onto the next ingredient.  Repeat.  For instance, if your child was diagnosed with a severe corn allergy and you want to make brownies.  Yes, you can get corn free baking powder at the store.  The flour might be safe.  You can find corn free cocoa powder.  But, if you don't think small first and make your vanilla extract with safe ingredients before you even begin all of that work buying safe products was for naught.

One of the first things I did when my son was diagnosed with his garlic allergy was to start making my own chili powder.  Why?  Well it turns out that chili powder is the basis for a LOT of different seasoning blends.  By making chili powder I was able to open the door to making spice blends, taco seasoning and so forth.  Which led to FLAVOR going into food.  Which was so important to making cooking...well...normal again.

Once you start getting your small stones in place, a foundation will slowly start to form in your culinary life, which will become second nature to you in time.  Trust me.

I learned that shallots were a decent substitute for raw garlic, that quinoa flakes were an okay substitute for oats in some recipes (downright ucky in others) and slowly but surely as I came up with recipes that my entire family could eat, I started to feel in control again.  And you will too.  Start small.  I can not stress that enough.  Find substitution foods where you can to make your life easier.  I almost cried when I found Annie's ketchup was garlic free (at the time it was garlic free anyway...not sure if it still is).  It was the same way when I found that I could buy a few brands of canned or boxed tomatoes that were garlic free and that there was a brand of potato chips that weren't off limits with my daughter's corn allergy.  This is where having allergic friends comes in handy as they can point you toward those few products that will save you time and effort to put that time and effort into other things liking cooking food that your family can eat and enjoy.  And you'll quickly find that time becomes a premium with allergies and any product that makes your life simpler is a God send.

Image Source:  Iherb.com

7.  Finding Safe Products.  The Organic Food Section is Your Friend.

The shorter an ingredient list on a nutrition label, the better.  The less chemicals you have to look up online, the better.  Both of those items will lead you inevitably to the organic food section at your local store because, trust me, that is where the holy grail of allergy free foods are.  And yes, you will pay more for them. 

Is it worth it?  In my opinion heck yeah!  Now mind you, once you find the foods you can eat?  Hit Amazon.  I buy a lot in bulk from them that is WAY cheaper than buying it at the store.  Just be careful with Amazon, because they are SOMETIMES cheaper, but not always.  Like I added a gluten free cereal that I found to my Amazon cart, wanting to get it for schools come August and found that our local Carrs carried the exact same cereal, but for 2.00 cheaper regular price than on Amazon.  So, shop around.

If you aren't sure if your kid will like something?  I recommend Vitacost (or iherb.com).  Yes, they have a 10.00 shipping charge to Alaska, but you can order ONE of an item if you want in a lot of cases, or the lots you have to order in are relatively small (three, etc, in the case of Vitacost anyway), so you won't end up with 12 of something your child wouldn't eat if you threatened them with a painful death.

And, this is important, no matter how often you buy the product, ALWAYS check the nutrition label to make sure those ingredients haven't changed.  Because they can and that could lead to problems.

And this next one isn't really a step or a coping skill so much as a warning, because I ran into it myself.

8.  Do NOT Expect Immediate Improvement

When I started taking the allergens out of my son's diet, I really expected...I don't know...his eczema to clear up and his mood to improve and life to get rosy in a week or less.  So, here we are two and a half years later.  His eczema still flares and the causes are a mystery.  He still has to take Zyrtec a couple of times a week just to keep environmental allergies in tact and he just had to start Singulair on top of it.  He is still autistic (I know.  Stupid right?  But, honestly, I had hopes that once I got his allergies under control his autism would get better.  What did make the autism easier for him, and us, to cope with?  Therapies, a good school and hard work.  Still worth it though :). 

Now mind you, Alvah's eczema isn't HALF what it used to be.  Sure, he flares, but not as badly as he used to by far.  Now here's the kicker folks.  It took a YEAR before I honest to goodness noticed an improvement in his eczema.  Why?  Well, when your gut is irritated by allergens and intolerances, it takes a long time for that system to de-irritate enough to have things start working properly.  And that time varies.  So, please, do NOT give up getting allergens out of yours or a loved ones diet because you don't notice any difference for a long while.  Trust me, it'll pay off.  It just takes that annoying thing called time.

And finally #9, which is, in my mind, one of the most important lessons you'll ever learn.

Image Source:  Photobucket.com

9.  You Are Going to Make Mistakes!

Everyone makes mistakes.  We are all human.  No matter how careful you are, mistakes happen.  That is why we carry epi-pens and why we read an article and think, "Crap!  I didn't know that!"  When my daughter got diagnosed with the corn allergy...man I had no idea what that all entailed and I made SO many mistakes with the garlic allergy at first it blows my mind looking back on it (like buying 70 lbs of tomatoes to make tomato everything...tomato sauce, salsa, tomato juice, etc without garlic in it and then coming to realize that there actually WERE canned products I could buy that would get the job done for tomatoes). 

If there is one thing I've learned from having to deal with allergies is that yes, you are going to make mistakes.  All you can do is learn from them, move on, mourn when necessary, laugh when you can and just live as a fulfilling of a life as possible with the new restrictions you have to deal with.  I always joke, "Well at least we're not allergic to oxygen" and just try to do as well as I can with the lot I am given.

Well, I hope that this little bit of experience has helped a few of you feel more in control through the roller coaster ride that is allergies and maybe make you realize that you aren't alone in the world.  There are others of us who can safely say, "We've been there too."

Enjoy life!  Even with Allergies!

How to Cope With Allergies Part 1: Coping IS Possible!

I was recently asked, okay BEGGED would be a better term, to do a blog series on how I coped with my children's allergies, in particular how I coped with a garlic allergy as the blog reader who e-mailed me the request, her son was recently diagnosed with one and she was having a hard time with the entire experience.

On the forth e-mail from her, I relented and thought that this would be a good chance to explain, real world style, how I personally coped with allergies and try to help those who are newly diagnosed try to get a little grounding in their shifting universe. 

So, here we go.  How to cope with allergies step one. 

Look! Big Friendly Letters!

 1.  Don't Panic...Okay, Panic, but Not TOO Much!

I know, when you find out your child, or you, are allergic to garlic or corn and you get the handouts from the allergist or the recommendations for dietary changes from your doctor, it can be overwhelming.  And then you start reading through the paperwork and go, "Oh, well this isn't so bad.  I can do this."  Oh, how little we know then.

And then you go home, you sit down at the computer and start looking stuff up or you start reading nutrition labels.  And then you start hyperventilating and feel the room start to swim when you realize that, no, it isn't easy and how in the world are you going to cope with this?

For instance, when my son was diagnosed with the garlic allergy, I thought, "Oh, well this can't be too hard to figure out.  I mean, garlic can't be in too much."  Man, I was so, so wrong.  I never realized that things like spice blends of ANY kind on the market, including chili powder, were now out of bounds. Condiments...just skip that aisle...completely.   Seriously, that isle alone became so frustrating to me for a while I swear I'd start to get a stress headache as soon as I walked nearby it, wondering if someone had come out with a brand of mustard my son could have.  That anything with cheese powder on it was not safe.  That anything marked with, "natural flavorings" was going to be an issue.

I went and searched for garlic free recipes and found nada on Google...even GOOGLE let me down!  I ordered the one garlic free cookbook I could find only to find that after investing 40.00 after shipping on a small cookbook that it wasn't even garlic free...just raw garlic free.  It was beyond frustrating.

 And unlike calling and seeing if there was gluten in an item, like many have to do, calling and asking if there is garlic cross contamination in someone's product?  Yeah, if I heard, "Well, we don't HAVE any garlic flavored so-and-so..." one more time I was going to reach through the phone and throttle someone.  And it wasn't even their fault.  They just didn't know.  There were many, many times where I wished that I DIDN'T need to know.

Between that and the peanut allergy there were many times I thought I was going to lose it.  And the peanut allergy was labeled as one of the top eight food allergens.  And corn?  Forget it.  You're making everything from the ground floor up.  Qualified or not.

Which leads us to step two of dealing with allergies, which I have run by everyone I know who has had to deal with them and they assure me that it IS an actual step...

Fetal Position How To (Just in Case)

 2.  Go.  Curl Yourself Into the Fetal Position in the Corner of a Room.  Suck Your Thumb and Have a Good Cry.

Sucking your thumb is optional here, but eh...it seemed to fit the instructions anyway.  Crying is perfectly acceptable to do when the shock of what allergies entail wears off.  Trust me, you've earned it and if this is the only time in your allergic journey that you have to do this, you're doing great.   Anyone who has to deal with allergies does this and there is a good reason.  It's overwhelming and life changing.  But trust me it DOES get easier! 

This step might have to be repeated several times throughout the coping process.  I'll explain that as we get to it, but trust me...this is a necessary step.  Sure, you could cope with a glass of wine, or primal scream therapy in a pillow.  But honestly, nothing beats a good cry as far as I'm concerned.

The next step will make all of this transitioning stuff easier.  Trust me.

This next step I more then recommend.  It is a necessity for survival.

Image Source:  civilwarhome.com

3.  We Get By With a Little Help From Our Friends.  Find Some (Allergic Friends That Is)

I think that when you are diagnosed with allergies, the allergist should give you the name and e-mail of someone (with their consent of course) that has had to cope with the same allergy.  I was lucky when my son and daughter were diagnosed as  I had already reached out to the local gluten free community over the internet because I had tried the gluten free diet on my son to try and help with developmental delays (that we later learned were autism).  I found that gluten free bloggers had to deal with multiple food allergies, on average and were really great when I'd reach out with a certain question on how they coped with them.  Don't believe me?  E-mail some of them and ask for help.  I'm betting they'll help you.

I was also SUPER lucky to have a mom in my daughter's preschool who had to deal with multiple food allergies with her kids (unlucky for her) and one of the allergies she'd had to deal with was garlic.  She managed to give me a few products that got me started on being able to recover a bit of my sanity when it came to the garlic allergy.  We could do "allergy complaining" to each other on a regular basis, which was great.  It's like finding another mom who has an autistic child where I can use "therapy speak" and they get what I'm talking about without me having to explain what things like SPD are.  We exchanged information on new products as we found them and helped each other stay sane.  It was a huge blessing for me in the early days of coping with allergies to have that type of buddy system in place.

I know that locally, at least, we have a food allergy support group that meets about once a month.  Call your local allergist and ask if there is anything like that in your area if you can't find someone to lean on.  Even if it is just once a month, it might just help you cope.

So, find some friends.  Have a garlic allergy and don't know what to do or how to get started?  Hey, e-mail me if you can't find anyone else.  I always have an open shoulder and will help in any way I can.  I've been there and I know it's not easy.

Stay tuned as next time we start getting to the hard part.  How to start cooking with new restrictions and not wanting to repeat step two for the rest of your life.

NOTE:  You can read Part 2 of this series HERE.

It's Dead Jim: The Loss of an Allergy (and All It Entails)

 As people on Facebook were first to find out (sorry) last Wednesday was our yearly follow up with the allergist.   I'd been looking forward to the appointment for weeks, sick I know, because I was excited to find out how my son was doing.  You see, for the last six months Alvah's skin had been clear; beautifully, wonderfully so.  And so I was hoping that maybe, JUST MAYBE, Alvah would have lost at least one of his mega bady food allergies (as in the life threatening ones);  peanuts or garlic.

Well, the allergist was willing to do the prick test for the peanuts and garlic after seeing his clear skin.  The peanut allergy was scary as all get out to watch welt up on his back and watching the allergist standing by with an epi-pen ready just in case, especially after him being peanut free for a year.  Sort of made my husband and I sick to see it.  But the dot for the garlic didn't welt.  At all.  It was actually darned near impossible to tell where the garlic dot had BEEN once the 20 minute wait was up.

The allergist studied the negative reaction on the test and the fact that we'd, in desperation to my son's continued quest to purposefully lose weight (or so it seemed to us), introduced some processed garlic back into Alvah's diet without any type of bad reaction and came to a decision. Alvah is now approved to eat garlic again.  Raw, processed, the whole kit n kaboodle.

I kept expecting to feel this thrilled feeling at the thought that we'd gained the garlic back, and I tried to feel excited...I really did.  And don't get me wrong.  I am through the roof elated that I can once again buy garlic cloves and have them in my kitchen without worry and that I can actually EAT garlic again without worrying about hurting my son through second hand exposure.  That I can buy some cheaper options at the store when it comes to tomato products and such.  That, instead of having to buy two different types of ketchup for the kids that now I can just worry about getting Heinz organic ketchup for my daughter's corn allergy.

Yet, the idea of feeding my son actual raw garlic, cooked or otherwise out and out terrifies me.  I have battled the eczema battle for so long that a part of me is actually mourning the loss of the garlic allergy.  Why?  Because that means Alvah CAN eat garlic again.  And that means that the garlic allergy might come back.

I mean look at that skin.  Would you want to mess with skin this clear?  Yeah, I didn't think so.   This time last year my son's hand would be a mass of cracked and bleeding skin with little clear skin to be had (his hands always got the eczema the worst).  His nails didn't grow right because his hands were always so cracked from the eczema and he held his hands in a semi-curled position, which his OT at the time had compared to someone who had suffered a stroke and was in constant pain from it.  I had to slather skin cream on him constantly just to keep his joints from bleeding whenever he'd have to use his hands for anything and he had to wear gloves at school because of the blood exposure to other students.  Yes, it was that bad.

But, Alvah can have garlic again.  The prick test proves it.  Shouldn't I be happy instead of feeling paranoid?

I'm still baffled that I feel this way.  I mean I have worked really hard the last year and a half to keep garlic and other allergens out of this house.  To make sure my child was safe from the allergies that could make his skin crack.  And kept hoping that if I did a good enough job that maybe he'd be able to regain some of the foods he'd lost and be able to enjoy them again.  And yet now that the garlic allergy is gone I'm scared of reintroducing Alvah to foods he used to love with garlic in them.  Roasted garlic mashed potatoes.  Chili, the way he liked it.  Tunafish and crackers with seasoned mayonnaise.  The list goes on.

When you realize you have food allergies to battle it changes your life dramatically.  People often ask me what it's like to suddenly have your child diagnosed with a type A categorized food allergy or other life threatening food allergy (which peanut was type A for us and garlic was in the potentially life threatening category too, although not epi-pen severe).  I liken having your child diagnosed with any food allergy to getting hit in the face hard with a board.  It's shocking.  It hurts and it really throws you through a loop.  But, you recover, pick yourself up off the ground and start to work on healing and getting on with life.

And then, it seems, when you lose a food allergy, it's like getting hit in the face with a different type of board.  It's shocking.  It's exciting.  It's worrisome.  And it's just as big of a change as getting the allergy in the first place.  Ever tried to think, in reverse, of what foods have garlic in them?  Yeah, I'm still trying to figure it all out.  I had the breakthrough this morning that I could actually buy nitrate free sausage and it would be safe for all of us to eat now.  Yet, the idea of making prepared sausage is so alien to me at the moment that it's almost like learning to cook all over again.  It's somewhat overwhelming.

I have read a lot of articles throughout the years that it is possible to mourn the loss of a food, such as Celiacs when they find out they have to give up gluten for good.  I know that it's true as I have mourned the loss of more than one food on the allergy roller coaster.  Yet, is it possible to actually mourn the loss of an allergy once it's gone?  I'm starting to wonder.