Soy Challenge Success!

As I have posted everywhere now (a wee bit excited and relieved), James passed his recent soy challenge. The challenge was a different from his previous one, not only in the fact that it didn't end with epinephrine, steroids, and fear.

Disclaimer: This is a description of one experience with a food challenge. It is not meant to be a guide on how food challenges should be run, medical advice, or anything besides a personal narrative.

Skin Test First

As I've mentioned previously, getting James to the point of no antihistamines for a skin test/food challenge has been difficult. So, we combined the skin test and food challenge into one day. I wanted to get all his skin testing done but the allergist (not James's usual allergist, more on that later) didn't want to stress him out too keep things fairly calm. So, we settled on three tests: soy, wheat, and peanut.

Have you ever seen a more perfect SPT?

I've forgotten which the nurse said was wheat vs soy, but no matter. The histamine reacted, the rest did not, and that was perfect.

A Group Challenge

I knew ahead of time that James would be having a group challenge but I wasn't entirely sure what that would entail, other than there would be other people. My primary concern was if people would be challenging other foods that he is allergic to. My secondary concern was snacks; they had told us to bring snacks but I didn't want to bring something that would be a problem, allergy-wise, for someone else.

What I didn't know until we got there was that James's usual allergist would not be preforming the challenge. I did a fair amount of acting like it was no big deal (and it turned out not to be because the allergist running the challenge was excellent), James likes and trusts his allergist, not allergist's in general. I was concerned he would balk, but he did great (the entire time).

I am not sure how many offices do group challenges. Our experience was in Kaiser San Diego. I asked about the rational (mostly to make conversation because we were there for almost four hours). There is a long wait list (no kidding!). When they have one on one challenges, the primary person preforming the challenge is a nurse (this was our previous experience) and you only see the allergist if there is a problem or at the end. Kaiser is actually shorter on nurses than allergist. The allergist is able to monitor up to four patients at a time whereas the nurse can only monitor one. So, they can move the list faster by having an allergist do four challenges at once. 

I actually liked it better, because the allergist was in the room the entire time, mostly working on paperwork, but there. The allergist did say that they only schedule group challenges for the patients they are most confident will pass.

General Procedures

I believe James drank a total of eight ounces of soy milk, divided into seven different doses. He started with a drop on the tongue and ended with 4 ounces in a cup. There were 15 minutes in between each dose and an hour waiting at the end. He was allowed to drink Gatorade in between doses. Although he complained of the taste, he drank the doses quickly. Except for complaining that the soy milk was disgusting enough to make him want to vomit (quickly adding it was an opinion not a physical reaction), the challenge literally went that smoothly with no hiccups or concerning signs at all. 

Epi-Pen Information

Since we were there, I decided to ask the allergist about Kaiser's Epi-Pen policies. This is from casual conversation and not a "written in stone" policy. According to the allergist, Kaiser Southern California will not be switching to the generic Epi-Pen this year but will be staying with Mylan brand (depending on your plan, of course, but the allergist's first choice will be to write an Epi-Pen prescription). Kaiser is "not really" a commercial plan and the allergists will not be filling out vouchers for Auvi-Q. I did not push this at all, because James is comfortable with the Epi-Pen, having used it before, and I am not looking to switch. If I were, I would definitely question this decision.

Next Steps

We were advised to have James keep soy in his diet 2-4 times a week. I can tell you from his complete disgust during the challenge he won't be consuming soy milk. I'm going to try both tofu and edamame as two sources high in protein, hopefully he will like one or both of them.

James has a wheat challenge in a couple weeks, same allergist, same group challenge. I am hoping now that we have done this once, know the procedure, and he's passed, it will be emotionally easier. It will certainly taste better and so be easier in that respect. I was so proud of James, because he was (outwardly) so calm and composed about the entire challenge. It was not easy for me to stay calm so I can only imagine for him.

This weekend, he will be trying fresh tomato at home (he has OAS to it, but never a severe reaction). I am supposed to contact his allergist when he, presumably, passes. He passed! At that time, I will ask to be put on the wait list for peanut, as well as ask about trying mango and watermelon at home.

The wait list is four to six months, and to be honest, I think we will be glad for the break and will try mango and watermelon at our leisure while waiting. Tree nuts would be the next step, but James is not ready to think about that at this point.

The long and winding road to a food challenge

I am aware it's been months since I have updated.

Sometimes, I nothing to say. Other days, I didn't know how to share, would I be able to convey the hope and the fear jumbled together. So, I said nothing. And focused on enjoying the moments.

Bringing you up to date:

We saw the allergist in December. Remember that James has always had low IgEs, despite his reactions. Nevertheless, for food, he only has three (barely) positive remaining: wheat 0.21, pistachio 0.18, and peanut 0.18. He also has four (barely) positive environmentals: Bermuda grass 0.28, Rye grass 0.28 (the grasses have always been his worst environmental), Russian thistle (aka tumbleweed) 0.24, and cockroach 0.14.

He has an oral food challenge scheduled for soy, then wheat two weeks later. He will have skin testing done at the soy challenge so we can inform ourselves before deciding on any other challenges.

We have successfully added legumes (except peanut and soy) to his diet.

I have permission to feed him raw tomato at home, but when he is not taking Allegra, so I plan to wait until after his soy challenge, when he will have stopped antihistamines.

He had three occasions of hives in six weeks. Dr Li adjusted his protocol and (knock on wood) he has not had any hives in four weeks.

In the near future:

As mentioned, we have a soy and wheat challenge scheduled. In order to proceed, he has to stop taking Allegra, have no hives, not be sick, and have a successful skin test. The skin test both needs to work (he has had one previously where nothing reacted, not even the histamine control, although he did complain about itchiness, so weird) and be negative.

All of them are somewhat of a concern, but right now I am feeling as confident as possible.

Additional wrinkles are that his first challenge will be a group challenge. I'm concerned if someone reacts, it will cause anxiety and make him feel he is reacting. A lesser concern is what to bring for snacks in a room where kids will be allergic, but I'm not sure to what. Feel free to comment with suggestions or hop on over to my FB page, where I'm also collecting ideas.

Cardamom Ring

This post is really just for me (although you are welcome to read it. Ha!). Every year about this time, I go looking in my email for my grandmother's cardamom cake recipe. Then, I try to remember how I made it gluten free. I am pretty sure this is accurate, although if I find Christmas Eve that I'm missing something, I promise to update. I'm hoping that this post will keep me from having to re-invent the wheel every, single year.

This is our traditional Christmas morning breakfast. James loves it. He eats nearly the entire thing himself every year.

This is an "oven saver," actually an oven pie guard, but it's a family recipe and we always called it an oven saver. When i went to buy my own as an adult, this caused endless confusion. I'll try to save you that trouble (affiliate link):

When I was a child, my mom used to carefully decorate it with candied cherries to look like a wreath. We just as carefully picked them off because - yuck! I have chosen not to decorate it. There's lots of tastier ways than candied cherries it could be done though.

Cardamom Cake

2 c gluten free flour

1/2 c sugar

3 T baking powder

1/2 t salt

1/2 t ground cardamom

1/4 lb butter, softened

2 eggs

1/2 c milk

1. Mix together the first 5 ingredients.

2. Cut in 1/4 lb softened butter.

3. Stir in egg and milk until only just

combined.

4. Spoon onto a greased oven saver.

5. Bake at 425 for 15 min.

6. Spoon on icing (1 1/2 c. conf.

sugar, few drops milk, 1/2 t vanilla).

Simplifying the Allergy Friendly Kitchen

I will not lie; my kitchen was already ... well used ... prior to food allergies. But, exploded might be a better description since James was diagnosed. A million and one different types of flour (all in tiny little bags), gadgets that will surely function to transform gluten free flour into a true wheat replacement (pro-tip: nope), any sense of flow lost under the day to day pressure of cooking everything.

Enter my friend, Karen, a simplicity coach (Keep it Simple is her website). Karen's focus is not organizing, but simplifying. I didn't understand the difference; if things were organized, my life would be simpler. However, after working with her, I get it. Organizing takes what you have and applies a system. Simplifying removes what you don't use or need, so you don't need a system.

She gave me homework, both physical and mental. Part one was to think about the flow in my kitchen and what I would want that flow to be ideally. Part two was to remove everything from the cabinets we would be working with.

Part 1:

We have lived in our house for almost eleven years. When you move in somewhere, you think about where it makes sense to store things. If you are anything like me, you don't think about it again for eleven some odd years. Looking at it from the perspective of, "What makes sense here?" allowed me to see my flow in the kitchen was clogged.

Part 2:

I got to this point (stuff from my appliance garage and three upper cabinets - seen in the background) and I messaged her, "I think this is all we have time for."

The Result:

We had time for much more than than I thought,mostly because I had already been thinking about what I wanted for function in my kitchen. I didn't have a lot of decision making left to do. We finished the appliance garage, four upper cabinets, and my entire walk in pantry - a huge mess.

Since a picture is worth 1,000 words:

And here are my counters:

It is peaceful in my kitchen now. I have countertops for prepping and am not constantly trying to figure out where to put something down.

How is the function in your kitchen? Do you think you could simplify it to work better?

Thanksgiving, Allergy Style

The food restrictions we will accommodate on Thanksgiving include: vegan, peanut, tree nut, soy, and wheat allergies, OAS to melon and tomato, avoids most legumes (not peas anymore! This means vegan butter is in. Hoping to re-introduce at least one more legume before Thanksgiving). My goal is not to make every dish meet every need, but for everyone to be able to eat a complete meal within their restrictions.

These are not my recipes, but the collection of what I will use and how I will adapt them.

Pre-Thanksgiving (with guests):

Avocado Pasta (with cheese on the side)

Taco Soup: No recipe, vegetable stock (4 c), salsa (1 small container), whatever add ins everyone can have and lots on the side. Suggestions for add-ins/toppings: black beans, cheese, tortilla chips, meat, avocado, corn, kidney beans, sour cream (yuck, not here).

Thanksgiving Day:

Turkey
Mashed Potatoes (will not make vegan)
Sweet Potato Casserole (will be vegan)
Green Bean Casserole (Will not be wheat and maybe soy? safe. James doesn't eat it so I honestly don't really know the allergens present. Also not vegan - my sister also doesn't eat it)
Stuffing stuffed pumpkin
        Vegan Version: Wild Rice and Brussels Sprouts  (but I replaced the nuts with sunflower seeds)
         Non-Vegan version: Sourdough Artichoke (I will use GF Jules recipe to make baguettes)
Pumpkin Ravioli with a Sage Pesto
     Pasta Recipe
     Pumpkin Filling (no cheese)
     Pesto recipe (pumpkin seeds to replace the walnuts)
Caesar Salad and Autumn Salad (to be vegan)
Gravy (not vegan)
Cranberry Sauce

Seriously, I already feel sick looking at that collection. But, we still have ...

Dessert:

Apple Pie (vegan)
Whoopie Pies:
     Pumpkin and Chocolate but both using the pumpkin version's filling

My Action Plan:

Making Now:

The pumpkin ravioli and the wild rice stuffing are already in the freezer. I am going to pre-bake and freeze some baguettes. And, I will pre-make and freeze the cranberry sauce. I'm hoping to test out and maybe freeze the whoopie pies before Thanksgiving. Maybe some "Whoopie! The election is over" pies.

A Day or Two before Thanksgiving:

Bake the sweet potatoes and prep the casserole. Make the green bean casserole. Bake the mini pumpkins, make the artichoke stuffing and stuff the pumpkins. Make the apple pie.

Thanksgiving Morning:

Make the whoopie pies (if they aren't done). Prep the salads. Make the pesto.

Right before eating:

Bake all that needs to be baked, make the mashed potatoes and gravy. Boil the ravioli.

My husband dos the turkey (and the gravy and Caesar salad for that matter) so that doesn't make my plan. He usually cooks it outside (either smoked or fried) so it also doesn't interfere with oven space.

Have you started your Thanksgiving plans?

An Apple Every Two Years

is apparently not enough to keep the doctors away.

But, here is James, his first apple in two years.

His Apple History:

He reacted to a fruit salad (no apple) on June 30, 2014, the day before his 12th birthday. He had a two system reaction and so self administered his epi-pen. Later that summer, he got an itchy mouth when eating apple, although he had applesauce earlier that day with no reaction. This disparity led his allergist to test him for oral allergy syndrome (OAS). In one of those weird twists, he did not test positive for apple (on the fresh apple skin test, no IgE was taken). However, he tested positive for other fruits and vegetables, including the melon that we now know caused his reaction.

His allergist advised me that we could do an at home challenge for apple. However, at the time, he was having issues with more and more foods and we were in the process of simplifying his diet. He had no desire to try apple. Since he could eat most apple products, just not fresh apple, we left it alone.

Fast Forward:

He has improved immensely, both physically and emotionally. His IgE for grasses, which is what causes his OAS allergies, are now nearly negative (0.24 and 0.37, a 90% and 89% reduction). We are joining friends this weekend on a hike followed by apple picking; he wanted to be able to eat an apple.

So, we decided to go ahead with the challenge recommended two years ago.

Please note: I am not giving medical advice or recommending you follow these steps. I am describing the steps recommended only in this particular case by a board certified allergist. If you have questions specific to you or your child, please consult your own board certified allergist. Thank you.

What was supposed to happen:

1. Take a thin slice of apple, put it to his lips, wait 15 min.

2. Microwave a small slice of apple for 10 sec. Take a nibble. Wait 15 min.

3. Slowly finish the microwaved slice over 15 min. intervals.

4. Repeat with a fresh slice.

5. Continue eating more until an entire apple has been eaten.

What did happen:

1. Hand James the apple slice to put to his lips.

2. He eats before I can say anything.

3. "What, was I not supposed to eat it?"

The results:

The first day he tried apple (about half of the entire apple), he got some very minor digestive problems. This is not entirely out of the ordinary for him and he was likely nervous. So, we stopped for the day and said we would come back to it.

Two days later, he finished an entire apple with no symptoms. And just like that, one food is down.

Moving Forward:

I plan to celebrate this victory for a while before moving forward. Whether he never had OAS to apples or he if his environmental allergies improved enough that he can now tolerate it, it is a victory. He is confident enough that he will try foods he has been avoiding.

The next food I plan to re-introduce is green beans. His allergist also felt that his issue with legumes is more of an intolerance. Legumes are histamine liberators. Since he has had a histamine type reaction, it is possible that, while his body was recovering from a reaction in particular, he had trouble digesting them. I will not be home trialing any that he was specifically tested for (all were positive) without discussing with his allergist. But, I am ready to lift the "avoiding legumes" label if possible.

Update:

In perfect irony, James got sick, so we will not be going apple picking this weekend. Nothing to do with apples or allergies, just your standard virus. Considering that in two years, he has not had a fever ever, I am debunking the "apple a day keeps the doctor away" advice.

Chronic Urticaria and Low Histamine

I have played with a low histamine diet for James, as it is a fairly common on-line (read: not doctor) recommendation for those with chronic urticaria. And then, last week there was this article:

"A Popular myth – low-histamine diet improves chronic spontaneous urticaria – fact or fiction?"

The points I felt most significant were:

1) they were on the diet for 3 weeks (which truly, is a very short time)
2) 75% of the participants had some improvement
3) 61% reached the endpoint goal of the study

The specific diet they used in the study is not mentioned in the abstract. I would love to see it. Part of my halfheartedness in using a low histamine diet exclusively is that there is so much on-line information, and a lot of it does not agree.

The other issue I have had in completely embracing low histamine is the mental effects. For an already food restricted teen, having to lose more food for a more nebulous health reason (that is, more nebulous than a clear food allergy) is distressing.

Here is how I have handled it:

1) No leftovers. I am trying to adhere to this as strictly as I can. I was a huge leftovers fan. With only three of us, it was easy to cook a meal and then use whatever was leftover in a meal later in the week. James had what we think was a histamine type reaction (leftover tuna, spinach, and blue cheese in a salad) and Dr. Li specifically advised against leftovers (and limiting blue cheese, which we have been fairly successful with).

2) Emphasizing the foods he can eat, trying to add in more of those foods which are low histamine rather than eliminating all the high histamine ones. My thought with this is that if he is full of low histamine foods, he will be not eat as many high histamine ones.

I have been using this list because I like how it is organized. Dr. Bowdish kindly replied on twitter with this option 

.@hollysjoy I've used a variation of this list from Allergy & Immunology Associates of Michigan https://t.co/eUufyigd6x

— Matthew Bowdish MD (@MatthewBowdish) September 17, 2016

It's one I also like because of it's clarity and limited nature (ie. not every food you eat is listed as high histamine).

These two reasonable steps are working for us. If this article had been posted when James had active and severe chronic urticaria, I would have done a stricter version, at least for three weeks to see any results.

At this point in James's life, I try to make any dietary changes or limitations part of teaching him how to eat as an adult, not that far away. In some ways, his diagnosis was the best thing that happened to him, because he had no idea one could eat without, in particular digestive, pain.  He is learning to listen to his body and eat accordingly. And this will serve him much longer in life than if I forced a certain diet.