Post Oral Food Challenge or Struggles with Soy

Disclaimer: This content is not intended as medical advice. .As always, contact your allergist or medical professional with any medical questions you may have and follow the medical advice they give. This is simply our experience.

It's been two months since James passed his soy challenge. The directions we were given were to make sure he consumed soy 2-4 times a month. According to this article, about one third of patients do not regularly consume their former allergens after passing an oral food challenge. This matters because to avoid a recurrent allergy, the research says one needs to regularly consume the former allergen.

The nurse asked why we even challenged soy, since it is an issue to keep it in the diet for most (soy lecithin, soy bean oil, soy sauce all do not count because they are low in protein. Many who are allergic can eat soybean oil and lecithin.). For James to know that he will not react if he has soy (and he has had an accidental soy ingestion before), it was worth it. My husband would say it was worth it to have regular soy sauce (and hopefully, eventually, eat in real Chinese restaurants). It is something I think one should keep in mind before challenging a food. Is it worth it?

This is not a question the allergist discussed with us. He knew we were motivated. But, the reintroduction has not gone smoothly. During the challenge, James complained of stomach upset, but everyone thought it was from the amount of liquids he was drinking to wash away the taste of the soy milk. However, he has continued to have stomach upset and/or pain on consuming soy. He did not want to give up, so we have kept trying.

Forms we tried:

Tofu: James liked it the first time until he asked me what it was. When he heard it was fermented soybean, he said he felt sick. The next time, he adamantly stated he didn't like it at all. Orange Glazed Tofu and Hawaiian Tofu BBQ Bowls

Edamame: I personally love edamame with a little bit of sea salt. James said if he had to, he could swallow them like pills. Taking all those pills per day is coming in handy.

Roasted edamame: I thought they tasted like dirt. James said he could eat them if he was really hungry.

Soy Milk: Tried at the food challenge, never again.

Edamame Guacamole: This was a maybe. I need to play with the recipe a little more. I really jsut made guacamole and added in edamame.

Chocolate and Roasted Edamame Toffee: Darren and I liked it. James did not.

Soy Protein Cookies: made with sunbutter, very dry, used soy protein powder

Hot Cocoa with a teaspoon of soy protein powder in it: James said this taste foul and I believe him. It smelled foul.

And, finally success with;

Nestle's Chocolate Chip Cookies

I read here that you can replace 1/3 of the flour in a recipe with protein powder. So, I did. Now, it's been a long time since I have made wheat chocolate chip cookies, but none of us could taste any soy. They were delicious. And, he didn't get any stomach upset.

The biggest problem is that he has to eat 6 1/2 cookies to get a similar amount to what he had at the challenge. Well, this isn't a problem for him! I am going to try recipes that are slightly more healthy - muffins, pancakes, etc - and hope that this is the solution we are looking for.

My thoughts:

Allergists are always eager to broaden the diet and for good reason. Although James is considered tolerant now, he is not as tolerant as I expected. It is not the same as one who is simply not allergic. If he doesn't consume his allergen, he has a higher risk or reacquiring it. While this is not OIT - no measured doses, no rest breaks, and he can eat as much as he wants - it is not complete freedom either. He is somewhere in between. For all is other allergens, it will be easy to include them in his diet once he passes the psychological hurdle of eating them; he loved nuts prior to his allergies.

It is a factor that should be considered prior to challenging: how will you keep the food in the diet and how hard are you willing to work for it?

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?

Food Fear Factor

"He's just anxious."

How many of us know someone who has the flu and afterwards, for a time, avoids the food they ate  before the flu started? Logically, they know that pasta dinner did not cause the flu, but physiologically, their stomach turns every time they look at a plate of pasta.

Now imagine that instead of throwing up, that plate of pasta made it difficult to breathe, caused you to be rushed to the emergency room, ended with shots, and tests, and medications, and more tests. Is it surprising that a child looks at everything on the table that night and says, "I don't want to eat that."?

Allergic Living recently published an article, "5 Reasons Patients Shun Critical Food Allergy Testing." Number three on the list was fear of the oral test.

Allergists have (among other things) the job of determining what is safe to eat.  Lives and, depending on the circumstances, nutrition, can be improved by broadening the diet. But, allergists can also undermine the confidence of patients by dismissing fear as "just anxiety."

Our Experience:

James does not test allergic to apple. It was one of the foods he was tested for OAS for. In fact, it was the food that caused a reaction that made the allergist think he had OAS, yet the testing was negative. Since the testing was negative and OAS generally results in minor reactions, the allergist recommended we test apple at home. We haven't. James has no interest in eating apple (he does eat cooked apple). I don't care. He eats plenty of fruits. If he never eats another apple, he is not missing out nutritionally.

Last October, right before our first appointment with Dr. Li, James's allergist recommended a food challenge for soy and wheat. Dr. Li suggested we wait. James implemented a two allergist agreement rule for any food challenge so we are waiting. We would have waited on Dr. Li's request anyway. The time of waiting has been good for James. It has given him time to think about adding in the food, about what a challenge would be like, pass or fail. There are times when anticipation increases anxiety, but this has been about working towards a goal, with each swallowed pills and slather of cream, he takes back some control.

So, if all the tests look good in October, then those are food challenges he will complete. Soy and wheat, unlike apple, would make a huge difference in all of our lives. And, I expect, when the time comes, we will all be a little anxious. But, having taken time and allowed confidence to re-grow, I don't think it will be unmanageable.

Advice to Parents

You know your child. You need to make a careful consideration of all the factors and come to a decision. It's not a time to allow outside pressure from anyone - allergist, family members, strangers writing blogs - influence you, however well meaning they are.

1. Take your time. 

2. Work with your allergist.

3. Don't be afraid of taking your child to a therapist if needed. According to this toolkit from the National Eating Disorders Association, presence of a food allergy is a risk factor for an eating disorder. Obviously, most people with food allergies do not develop an eating disorder, however, if you notice that your child has developed extreme fear or avoidance behavior, professional intervention may be needed.

4. Celebrate your successes. I find this can be a one step forward, two steps back process, so we celebrate every step forward.

Has your child had and food based fear? What have you found helps?