Sunday, October 21, 2012

Peanut Flour Chocolate Crinkle Cookies





Throughout this experience I have tried multiple methods of eating peanut protein - all of which I find pretty revolting.

Peanut butter proved to be an irritant to my throat and esophagus, and actual peanuts were pretty hard on my stomach. But my wonderful mother started experimenting with baking peanut flour into cookies.

First, we tried shortbread cookies. Now, I have absolutely no idea why I thought this would be a good idea but I definitely would not recommend it. They tasted like dog treats, and to no one's surprise, the dog ended up devouring all of them one afternoon when no one was home. 

Then my mom tried using peanut flour in a chocolate cookie recipe my experience has improved ten fold. Not only does this method completely mask the taste, but I'm hardly having any symptoms.  The specific peanut flour we chose has a relatively high protein content, and relatively low oil content, and has less flavor than the other choices.  The recipe makes 24 cookies with 1000 milligrams of peanut protein in each cookie. The cookies have only 1000 milligrams because for now that's all I need to eat, and because we wanted to minimize the peanut-y taste. 

Peanut Flour Chocolate Crinkle Cookie Recipe:

Ingredients:

Confectioners' Sugar: 1/2 cup
Byrd Mill Peanut Flour Dark Roast 12%: 1/2 cup (24 grams of peanut protein)
All Purpose Flour: 1 1/6 cup 
Unsweetened cocoa powder: 1/2 cup (we use Hershey's) 
Baking Powder: 1 1/2 teaspoons
Salt: 1/4 teaspoon
Butter: 1/2 cup (1 stick), at room temperature
Sugar: 1 1/4 cups 
Large eggs: 2
Vanilla Extract: 1/2 teaspoon

1. Preheat oven to 350ºF. Grease 2 baking sheets with butter
2. Put the confectioners' sugar into a medium bowl and set aside
3. In another medium bowl, stir together flour, peanut flour, cocoa powder, and salt
4. In a large bowl, using an electric mixer on medium speed, beat the butter and sugar for about 3    minutes, until creamy
5. Add 1 egg and beat on medium speed until blended. Add the other egg and vanilla and beat until blended
6. Turn off the mixer and add the flour mixture. Mix on low speed until just blended
7. Using a tablespoon, scoop up a rounded spoonful of dough and roll the dough into a ball
8. Roll the ball in the confectioners' sugar until covered. Place the balls on a prepared baking sheet. Repeat, spacing the balls about 2 inches apart
9. Bake for 10-12 minutes, until crackled and puffed
10. Cool on cooling rack for 15 minutes

Update

A few weeks ago I got sick once again, and had a pretty severe reaction that ended in using my EpiPens.  Additionally, my seasonal allergies are at their worst in October, which has most likely contributed to my difficulties. Since my reaction, I haven't been able to handle 16 peanuts and many nights have ended in stomach aches and throwing up, even after cutting my dose in half. 

So, Dr. Nadeau decided it would be best if I went down from 4000 milligrams (16 peanuts) to 1000 milligrams (4 peanuts) at least until this allergy season is over. Throughout this and next month, I'll be slowly increasing my dose. 

On the other hand, my parents and I have discusses the possibility that I may not ever be able to handle 4000 milligrams without symptoms. But even if I end up only able to eat four peanuts, I think that is still a pretty remarkable success. The goal for me was never to eat a peanut butter and jelly sandwich for lunch, but just to be able to be able to eat without having to worry about cross contamination.  



Monday, July 2, 2012

Giving Back- 4000milligrams.org





Seeing the food you're allergic to is like the way other people see a poisonous snake or a tarantula. If you have food allergies, you know what I'm talking about. It's fight or flight. That fleeting moment of sheer panic that makes your stomach drop and your heart kick into overdrive.

For as long as I can remember, Epi Pens have been my security blanket. I can't remember a time when they weren't either in my bag or glued to my hand. They made eating things, touching things, and smelling things less intimidating. It was like the earthquake kit on the shelf in the front hall closet. Even if I never used them, just knowing they were always there gave confidence to live my life without being afraid of food.

But on August 8th I wont need them anymore. And as liberating as it's going to be, I have to admit that it is, psychologically, a scary thing to do. 

And I realize that there are many who suffer from food allergies that cannot afford to have Epi-Pens. So I've decide to raise money for the two causes that have truly changed my life.

My first initiative is to raise money for Epi Pens for children who don't have health insurance or whose health insurance does not cover Epi Pens. The money will be donated directly to Dr. Nadeau's patients.

My second goal is to raise money for Xolair. Xolair has enabled me to complete the study in just 6 months with fewer reactions. 

Please visit www.4000milligrams.org to donate. 

Thank you for your help!

You'd rather have what?

"Wait why do you need your own cup?"

I realized this was the first time I was going to have to explain my allergies to a guy I didn't know. And I had absolutely no idea what to say.

"I... just can't share anything with anyone right now!"
"Why?"
"I'm...sick. I have mono."

The words came out before I even realized their implication. Saying "I have mono" is NOT something you want to tell a cute guy at a party.

"Wait... do you really?"
"Um no just kidding. I actually... I actually just have a peanut allergy so I can't really share stuff with people. I think I'd rather have mono though.."

I waited for him to react. To walk away or something. Only he didn't.

"Oh. Haha nah that's way better than mono. Trust me you don't wanna have mono."

After that night, I wondered why my allergies seemed like such a big deal, and why I hated telling people so much. I realized that it was the worst kind of attention you could possibly get. A hot spotlight of vulnerability. Acknowledging my allergies made me feel weak and awkward, both traits that normally don't apply to me.

Vulnerability is a funny thing. It consumes you. It eats away at you until your self-esteem is centered around that one quality that makes you feel like you're different. After a while there's no "putting it into perspective" because every time you have to refuse a piece of birthday cake or order out at a restaurant or carry Epi-Pens, it's this constant, gnawing reminder that you're inadequate.

Now, all this might seem incredibly dramatic. And it is. But it took me a while to realize that. Having allergies was only a bad thing because I convinced myself it was a big deal. Cute Guy certainly didn't seem to think it mattered. I think I was so wrapped up in the fact that having allergies set me apart from my peers that I forgot to look at the big picture. That in the end, it just means you can't eat some stuff. That it doesn't define you at all.

The further I am into this study, the more removed I feel from my allergies. It has less and less of a looming presence in my life. It's easier to look my allergies for what they really are when they're not a constant source of anxiety. Just like with anything, food allergies are only a big deal when you act like they are. And when you think about it, seriously, having mono would be a lot worse.

Last Xolair Shot


ouch!




My "Dose Diary" where I record any symptoms I've had 


This is my last doctors appointment until I "graduate" from the study in August. I'm getting more and more excited!

Trying Something New





My friends eat it with a spoon. And I have to say I understand why. Jif Peanut Butter is actually kind of good, especially on apples. For the past three weeks I've eaten a slice of apple with one tablespoon of peanut butter on it every night. 

But eating something I've been avoiding my whole life is going to take some getting used to.

Sometimes, when I'm making myself my dose and I get peanut butter butter on my hands, there's this brief moment of panic until I remember I'm not going to die.

4000 Milligrams!!





4th Xolair Shot


4000 Milligrams of peanut butter!


I've finally reached 4000 milligrams- the amount that I will most likely stay at for the rest of my life (and as you might have guessed from the title of this blog- the ultimate goal). 

Needless to say, it was definitely an important milestone! However, August 8th will be the actual last day of the study. On that day, I will probably eat double this amount (8000 milligrams). I'm not entirely sure what will happen that day, but I will be sure to keep you posted. 

I Just Don't Like Peanut Butter


My very first Reese's Peanut Butter Cup




The face pretty much says it all. 



"You mean you've never tried a Reese's Peanut Butter Cup?" 

It was something I'd grown up hearing. For some reason, even though most people were well aware that I was severely allergic to peanuts, this fact always came as an utter shock. My life was apparently incomplete because I'd never had the pleasure of tasting the holy grail of peanut butter and chocolate. 

So when I tried Reese's for the first time, I had high expectations to say the least. 

But it just... didn't taste that good. And the truth is, I have nothing against Reese's, I just don't like peanut butter. I don't like the taste, and because when I eat it I still have mild reactions (like coughing, itchy throat, stomach ache, etc) I definitely don't like the way it makes me feel. 

 I imagine it's like tasting coffee for the first time. Peanut butter is an acquired taste, only it doesn't seem that way because most people are introduced to it at a young age. 

So hopefully it'll grow on me. Because I'll be eating it every single day for the rest of my life. 

It Started With a Cold

I was up to 2000 milligrams, eating about 10 peanut M&M's per night, when I had my first and only severe reaction thus far during the study.

I was almost done with junior year, and I was sick. Nothing too bad, just a common cold. But unfortunately, neither my parents nor I saw the warning that clearly states to cut your dose in half if you  get sick. So I had my dose that night as usual. 

Shortly after, I got a stomach ache (I usually refer to this as "the stomach ache" because for me, the type of pain is entirely specific to a food allergy reaction), only it was worse than usual. Soon after, I started having chest pains and it became difficult to breathe. At this point my parents called the nurses. I had already "pre-dosed" with Zyrtec, but they suggested that I take Pepcid (an antacid) to help with the stomach pain. Only then I threw up. A lot. 

So the nurse we were talking to decided that the best course of action would be to use an Epi-Pen. Now, I've used my Epi-Pens probably a dozen times, but I had never had a reaction that was so severe. 

After not dosing at all for the next two days,  my dose was cut in half for two weeks until escalate to where I had previously been.  We also added two Pepcid to my pre-dose. 

I began throwing up on a regular basis, though never actually after having my dose. Oddly enough it usually happened when I was hungry, like in the morning or after school. The throwing up went on pretty much throughout May and June, and at it's worst, I was throwing up three times a day. Dr. Nadeau said she'd never seen any reaction so severe. 

So we went to see a G.I specialist, who suggested that after the reaction, throwing up became sort of an involuntary reaction. It was like my body had learned a bad habit. After all, I was essentially poisoning myself with a substance that would have previously killed me. It's possible that I've developed something called Gastroesophageal reflux disease (GERD), which is a very rare side effect from the study. However, I began taking Prevacid, and the symptoms nearly stopped. I still occasionally (and very randomly) throw up, but not nearly as often as before.

And to think, if only we'd read the directions. 

2000 Milligrams - Half Way There!



My first peanut M&Ms



I've officially had my first taste of real peanuts! The verdict? They were okay. But honestly, I don't think I was missing out on much. 

On May 15th I started eating 10 peanut M&Ms a night, and continued to eat them for two weeks. 

Peanut Powder


1250 Milligrams of  Peanut Flour


so pretty!


Until I reached 2000 milligrams, I took my dose in the form of peanut flour, as it enables the most accurate measurement. It's doesn't have a distinct taste, just a texture, and I usually put it in a smoothie. But after two weeks of strawberry, banana and chalk smoothie, I think I'm done with smoothies for a while. 

Tuesday, May 15, 2012

1250 Milligrams


3rd shot of Xolair


Drawing blood


Eating 625 milligrams of peanut flour! That's equivalent to about 2.6 peanuts


Dr. Nadeau making sure i can continue dosing despite a mild reaction


1250 milligrams!


My dose escalation sheet


After I received my third shot of Xolair, I was able to continue dosing past the 5 milligrams I reached in the double blind challenge. 

Much like the challenges, I spent the day in the hospital continuing to escalate the amount of peanut flour every hour or so. 

By the end of the day I had reached 1250 milligrams. In just 8 hours it seemed as though I had gone from being able to eat 1/40th of a peanut, to eating the equivalent of 5 whole peanuts! For the next two weeks I will be eating 1250 milligrams of peanut flour each night. 

What does Xolair do?




Treatment with the drug Xolair has been vital in the study I'm participating in, as it will allow me to finish the study (and reach 4000 milligrams) in just six months as opposed to years. 

Xolair is considered an investigational drug (meaning it hasn't been approved by the FDA) for the treatment of food allergies in children and adults. 

Xolair itself is an antibody that helps to block IgE, which is an allergy antibody produced by the human body's immune system and is responsible for allergies and allergic symptoms. 

Thursday, April 5, 2012

Wishful Thinking


I supposed it never really bothered me that I couldn’t eat certain things. I always assumed it would be something I’d have to deal with for the rest of my life, and I figured I might as well get used to it.

So I had a rather resigned attitude towards the Halloween candy, the granola bars, the unmarked deserts sitting beneath glass windows at cafes. My approach towards food I couldn’t eat was never longing, never bitter, just accepting.

When friends would say “if you can ever eat peanuts, you should definitely try…” I would nod politely, and act as if it were a helpful suggestion, but I never let myself actually think about the possibility of such a thing. It seemed futile, naive, absurd even.

But ever since I’ve discovered that my condition is not permanent, just an ephemeral burden I won’t have to put up with for much longer, I look at food in an entirely different way. 

For one, I want things that I can’t have much more than I used to. I don’t have to accept the fact that I’ll never be able to eat those cookies from Safeway everyone raves about as long as I live. So I just let myself think about just how good they’ll taste, exactly what the texture will be like, knowing that for once the prospect of eating them is realistic, viable, almost tangible.

Then there’s also this sense of triumph. This feeling that for once, it doesn’t even matter if I can’t eat certain things because soon enough I’ll be able to eat anything and everything. In a weird way I feel like I’ve won.

In just 15 days, when I have my third Xolair shot and can actually start eating increasing amounts of peanut flour, I will be able to eat a whole world of food that is currently off-limits. Personally, I’m most excited not for food that actually contains peanuts, but for food that may contain peanuts (you’d be surprised at just how many companies are careless when it comes to cross contamination and segregation of allergens).

Recently I've been playing the What-Will-I-Be-Able-To-Eat game with friends whenever we talk about the study. This list, we’ve realized, is actually quite long.

It seems I’m so close I can taste it. All of it. 

Xolair


2 shots of Xolair, 150 milligrams in each arm




ouch. 





Observation for 30 minutes after getting the shots

On Wednesday, February 24th,  I received my first shot of Xolair (Omalizumab). Considering the study I'm participating in is "The Xolair Study," it was a pretty important first step in the desensitization therapy. Last week, on March 23rd, I received my second. 

Those who suffer from food allergies produce Immunoglobulin E (IgE) when exposed to the allergens they are sensitive to. Xolair acts as an anti-IgE, and in this way will help protect me when I'm exposed to peanuts. 

I'm scheduled to get 300 milligrams of Xolair every four weeks for six months. On the 16th week, after my third shot, I will have built up enough anti-IgE in my body to be able to start eating more peanut flour than I am currently able to eat. On April 20th, I will receive the third shot. On that day, just like during the double blind challenges, I will be given increasing doses of peanut flour until I react. During my double-blind challenges, I reacted at 6 milligrams. However, with my third shot of Xolair, Dr. Nadeau hopes that I won't react until I reach at least 1000 milligrams. 

As for the pain factor, the shots didn't hurt nearly as badly as I thought they would. After numerous warning from nurses that Xolair is a lot more viscous than other shots, and would take longer to be injected, I was definitely nervous. Luckily, they weren't that painful at all. 

Monday, February 27, 2012

Cashew Challenge


Skin test panel for tree nuts



No reaction to any tree nuts


half of a cashew 


Negative results! 


Because I made it to 100 mgs and "tested out" of cashews for the SAFAR study, we wanted to see how far I could exceed that 100 mgs. We started off with a skin test and I tested completely negative for all tree nuts, including cashews. By the end of the day I had eaten around 3 cashews with no reaction. Looks like my study will only include peanuts. 

All four food challenges are officially over, and to begin actual desensitization, I will receive the first of three injections of the drug Xolair this coming Wednesday. I can't wait to start!

Tuesday, February 14, 2012

Third Double Blind Food Challenge

                                                         
                                           6 milligrams (where I previously reacted)


                                                                   medication


                                                    Empty dose-containers



100 milligrams! (The maximum dose)


Unblinding 





Dr. Nadeau and I after my challenge

During the third food challenge, I made it to 100 milligrams, meaning that I "tested out" of that particular mystery nut. Whatever it was though, wouldn't remain a mystery for long. At the end of the day, we were unblinded. The first challenge had been peanuts (duh), the second was a placebo, and the third was cashew. So that means that only peanut will actually be officially part the study. 

Even though I tested out of cashews, Dr. Nadeau suggested that I be challenged with whole cashews to see if I could eat more than 100 milligrams. I'll be posting pictures of that challenge later this week.