Food Allergy Testing: Down the Rabbit Hole

“Have you guessed the riddle yet?” the Hatter said, turning to Alice again.“No, I give it up,” Alice replied: “What’s the answer?”“I haven’t the slightest idea,” said the Hatter” 

Usually, when we go to the doctor, have a blood test, roughly a week later, we receive the results and there's a diagnosis: your cholesterol is high, you have anemia, etc. These are screening tests.

Food allergy tests, both skin and blood, are not screening tests. A positive test does not mean you are allergic. In fact, both skin and blood tests are wrong about 40-60% of the time (called a false positive). False negatives are less likely, although possible, in both tests.

The only time food allergy tests should be performed is when you are having a reaction to a food. And the only way they can be interpreted properly is in the context of your history.

“That's the reason they're called lessons," the Gryphon remarked: "because they lessen from day to day.” 

So, now you have your results, and you have been given numbers, classes, wheal sizes, and the larger then numbers the more severe the allergy, right? Of course not. But, here is where the blood test numbers can come in useful (and you can eliminate some of the false positive concerns), the larger the numbers, the more likely the test is accurate. That is, the more likely you are to truly react. The likelihood that one will react is called the positive predictive value. This is from medscape here:

• Egg: In children > 2 years of age, IgE level 7 kU/L (98% PPV); in infants ≤ 2 years, IgE level 2 kU/L (95% PPV)
• Milk: IgE level 15 kU/L (95% PPV)
• Peanut:IgE level 14 kU/L (95% PPV)
• Fish: IgE level 20 kU/L (95% PPV)
• Tree nuts: IgE level 15 kU/L (95% PPV)
• Soy: IgE level 30 kU/L (73% PPV)
• Wheat: IgE level 26 kU/L (74% PPV)

As you may remember, James failed his oral food challenge to hazelnuts and his Ige is 0.46 (depending on what standard you follow, positive is either >0.35 or >0.01. Our lab says above 0.35, so he is barely positive).


And, here is the lesson, barely positive can mean an anaphylactic reaction. Negative can even result in an anaphylactic reaction (rarely). The test is meant to guide the allergist with your history in diagnosis. It is not diagnostic in an of itself.

“Why, sometimes I've believed as many as six impossible things before breakfast.” 

What about IgG testing? IgG has no place in testing for allergies or intolerances. Some researchers and OIT doctors have actually begun measuring it (research wise) as a good measure, as in, as IgG rises,  your ability to tolerate the food. IgG shows that you have been exposed to the food. There have been studies showing that children who out grown their milk allergies have higher IgG milk levels and that IgG levels rise throughout OIT. 

“Would you tell me, please, which way I ought to go from here?""That depends a good deal on where you want to get to."

We seem to be on the cusp of the future as far as testing goes.

At Stanford, there has been news of two new tests in development. The link can explain it better than I can, but one uses a heel prick to test for 90 allergens using white blood cells. The other looks at DNA. Used together, they can also be used to determine the severity of an allergy. Now, of course, families are told to treat every allergy as potentially life threatening.

At UConn, they are also developing a food allergy test, specifically for peanut, interestingly in addition to being a food allergy test, the researchers are hoping to use the test to get a better look into the biology of a reaction.

Of course, my personal favorite, Dr. Li is developing the Basophil Activation Test (BAT). Because James's IgEs are all low, an alternate test for him, for people like him, is necessary. The idea of him undergoing another food challenge relying on a test that is, quite frankly, inadequate, is terrifying.

That said, parents are fundraising for a clinical study to help move forward Dr. Li's work on the BAT. The total is not completely updated on the page; we need slightly less than $5,000 more. If you are able to contribute anything, it would be greatly appreciated. We are trying to get the last bit raised by the end of this month.

Great news from this afternoon (April 27th) that the study has been fully funded! Thank you to everyone who has contributed and everyone who supports those with food allergies in any way.

Chocolate Dipped, Wheat Free (Gluten Free) Graham Crackers

Why Not out of a Box?

James is avoiding legumes, and so far, I have yet to find a wheat free graham cracker that does not have pea protein as an ingredient. I am open to suggestions! However, these are not that difficult and tasty to boot.

Free of: Peanuts, wheat/gluten, eggs, fish, shellfish, legumes (soy-see below)

Depending on comfort level/variation: tree nuts (contains coconut), milk (type of chocolate/shortening you use), soy (lecithin depending on type of chocolate)

Ingredients

1 c GF all purpose mix

1/4 c. seed meal*

1/4 c coconut flour

1 tsp xanthan gum

1 1/2 tsp cinnamon

1 tsp baking powder

1/2 tsp baking soda

1/2 tsp salt

1/2 c butter*, cold, cut into chunks

3 T water

2 T molasses*

1 T honey*

1 t vanilla

*Ingredient notes:  I get seed meal from Gerbs Seeds but it can also be made by chopping your seeds to a powder in your food processor. If leave the processor on too long, you will end up with butter, so pulse the processor until the texture is a coarse powder.

To make this dairy free, use whatever safe solid shortening replacement you prefer.

To vary the taste of the end product, change the amount of the honey and molasses. The way it is written here, they will taste similar to a spice cookie. With all honey and no molasses, they will taste quite sweet, more like a traditional honey graham cracker. Use your preference are your guide.

Directions

1. Preheat the oven to 325°.

2. Line 1 or 2 cookie sheets with silicone baking sheets or parchment paper, depending on how thick your final crackers will be rolled out. If you want the crackers to be crisp (good for s'mores), you will need 2 cookie sheets. If you want a softer cracker (more cookie like and also, I think, good for ice cream sandwiches), you will only need 1. 

3.  In a food processor, add from flour mix through salt. Pulse once or twice to combine.

4. Add the butter (or shortening) and pulse until blended and resembles cornmeal.

5. Add the water, molasses, honey, and vanilla. Pulse until combine and a soft dough forms. 

6. Sprinkle powdered sugar on the silicone baking sheets (or parchment).

7. If you are using 1 cookie sheet, roll out the dough to about 1/4", using powdered sugar as necessary to keep the dough from sticking. If you are using 2 cookie sheets, divide the dough and roll each out to about 1/8" thick.

8. Use a pizza cutter to score the crackers into whatever shape you want. Then, poke with a fork in a regular pattern.

9. Bake for 15-20 min, depending on thickness, until edges begin to brown.

10. Remove from oven.

11. While still warm and on pan, use a sharp knife to cut along the scored lines. Allow to cool for 10 min. Then cool completely on a cooling rack.

12. Using the directions from this post, melt the chocolate of your choice.

13. Use a pastry brush to apply the chocolate and place in the refrigerator for approximately 4 min or until set.

Bean Less Chili

We avoid legumes, because they seem to cause GI problems for James. So, here is our Bean-Less Chili with, like all good chilis, a secret ingredient.

Free of: tree nut, peanut, wheat, fish, egg, milk, shellfish, soy, and legumes

Bean Less Chili

Ingredients

6 slices bacon*

1 1/2 onions, chopped*

2 T minced garlic

1 lb ground beef*

4 T chili powder

1 T cumin

1 1/2 t paprika

1 t Sichuan pepper*

1 bay leaf

1 15 oz can tomato sauce

1 14.5 oz can diced tomatoes

1 c stock

Salt and Pepper to taste

* Ingredient Notes: Chili is an easily adaptable recipes and I rarely make this the same way twice. For instance, I prefer slab bacon (I use between 4-6 oz diced when I have it), but didn't have it this time. I often add whatever vegetable I have on hand along with the onions. If I have made a beef roast recently, I use leftover roast beef, as opposed to ground beef. 

Sichuan pepper looks like red peppercorns, slightly, but are not related botanically to peppercorns, What they are known for is causing a numbness when eaten, but they will not cause that effect in this dish, having been cooked too long. You can buy this at Penzey's if you can't find it locally (they spell it Szechuan). The information I have from Penzey's as of 4/2015 is that they have no peanuts at their facility. They do make almond flavoring but the almonds are kept in a separate part of their facility.You should contact them regardless, but I do not know specifically the information on their other allergens.

If you don't want to use it, substitute what you like: extra black pepper, jalapenos or other chiles, hot sauce, or leave it out.

Whole Sichuan Peppercorns

Ground with Cumin

 Directions

1. Cut the bacon into small pieces and fry them in a stock pot.
2. While they are frying, chop the onions and garlic and set aside.
3. Grind any spices you need to and combine all the spices except the bay leaf and the salt and black pepper. Set aside.
4. Remove the bacon pieces and set on a plate with a towel. Drain most of the fat.
5. Add the onion and garlic and saute, stirring often, until soft and translucent.
6. When the onion and garlic are ready, add your ground beef and break it up. Add the spices, including the bay leaf, on top.

7. Cook until the beef is cooked and the spices are fragrant, stirring frequently.
8. Add the diced tomatoes, the tomato sauce, and the stock.

9. Simmer for 1 1/2 hours, covered, stirring occasionally.

10. Remove the bay leaf and serve with whatever garnished you desire.

It's Done

I hope you enjoy!

Camping: Food and Medicine

When Going to the Grocery Store isn't that Helpful

Fortunately, we have an RV, so I don't have to figure out how to camp for a week with only non-perishables. That said, there is a little more prep for food when we camp. And since I spend so much time cooking regularly, I like to have as much done in advance as possible, so my vacation is actually a vacation and not time spent cooking.

For the next week when we go camping we have planned:

Breakfast:

English Muffins with Sunbutter (made the English Muffins ahead and froze)

Pancakes (made a couple batches of batter and froze)

Breakfast Burritos (made the wrappers and burritos ahead, frozen)

Eggs and Sausage

Lunches:

Lunch meat,cheese, fruit, crackers

Dinner:

Mushroom, Beef, and Potato Kebabs (made ahead)

Pasta Salad (made ahead)

Hot Dogs and Salad (cut up the salad ahead)

Fried Rice (made ahead and froze)

Bean Free Chili (made ahead and froze, recipe to follow)

Blue Cheese and Bacon Hamburgers (made ahead and froze)

Dessert/Snacks

S'Mores with homemade chocolate dipped graham crackers (recipe to follow)
No-Nut Homemade Kind™ Bars
Homemade Cocoa Mix

And in case of emergencies

Things we always consider:

• How much medicine do we need to take?
• How does it need to be stored?
• How far are we from emergency services?
• Will we ever be out of cell phone range?
• Any special precautions needed?

In this case, we know we will be taking a hike in water, so we ordered a waterproof pouch for James's epi-pens and my inhaler.

Be Prepared

 So you can then relax and enjoy your time away.

Choosing an Allergist

Our Experiences with Allergist

Allergist (?):

I almost forgot about him, probably not the highest recommendation. We saw him when James, at 3, was diagnosed with chronic urticaria. After he diagnosed him and gave us his treatment protocol, James was followed by his pediatrician and we never saw that allergist again.

Allergist N.:

This is the allergist I think of as James's first allergist, the one that left us both scarred.

We have Kaiser, an HMO, and after James's first reaction, subsequent hospital visit and blood tests, he was referred to an allergist. After his first appointment, where the control did not react on his skin test (despite having no antihistamines for 4 days, no matter the significant look exchanged between the allergist and nurse), it was determined that James likely had a reaction to tree nuts, seeing as how he was eating hazelnuts when he reacted. A hazelnut blood test was never ordered. 

James was prescribed an EpiPen® (but we were not given directions on how or when to use it) and we were told to avoid tree nuts and wheat. Not long after, because of reflux problems, soy and peanuts were added to the list to avoid.

We were asked to return in a year for a food challenge.

And we did. Because I didn't know any better. No more testing was done before the challenge (although when his hazelnut iGe was eventually run it was only 0.46, so he does appear a good candidate for a challenge on paper).

He failed his challenge on the first dose and needed an injection of epinephrine and one of steroids. And Allergist N panicked. More than anything, this scared James. If the doctor was panicking, then the situation must be dire.

I now know, a lot was wrong with how this was handled: an oral food challenge (OFC) of a food with a known serious reaction, an OFC without test results for the food, panicking (well I knew that to start). So, I started researching more about food allergies and knew we would not return to this allergist.

Allergist S.:  

We saw after James's OAS reaction to melon. At the time, the urgent care had drawn blood, thought it most likely to be mango, and under the "you really can't make this stuff up file," couldn't figure out how to code testing for any of the other fruits he had eaten anyway.

I had done much more research by the point and realized that a positive blood test does not necessarily mean an allergy. I wanted to have an allergist review the situation and do the diagnosis. Only, according to Allergist S, everything except the tree nut allergy was in James's mind. Allergist N had failed to record any of the symptoms he had had during the failed food challenge, so they hadn't happened. I'm not sure why he thought Allergist N epi'ed James.

And yes, James was anxious going to see the allergist. The last time had not ended so well.

Allergist S said we should return in 5 years for re-evaluation. 

Allergist L:

Darren and I were trying to decide whether to change insurance as open enrollment was approaching. He has his own health issues and had been satisfied with the care he has been getting from Kaiser. I was completely dissatisfied with the allergy department. I did find an allergist within the Kaiser system that looked promising about an hour away. To see if we could all be happy with Kaiser, I wrote James's pediatrician outlining the problems I had had so far and that if we were unable to find a qualified allergist, we would be switching insurance.

And finally, we hit the jackpot. James is definitely complicated as an allergic patient goes: low iGes, high reactivity, OAS, possibly Celiac and not a wheat allergy, history of hives. There's a lot to tease out. But Allergist L did (and continues to do) the work to determine out what is relevant and important for diagnosis and treatment.

Personal Referral

This actually didn't work for me. Maybe if it was a true personal referral, from someone I knew and knew what they expected from a doctor. This was a referral from Facebook and landed us with Allergist S. Unlike Allergist N, I am sure he is competent. He was, however, a bad fit for our family.

Do You Feel Lucky?

So, how do you find a good allergist? Is it all luck?

With Allergist L, there was a lot of luck involved. After James failed his food challenge, I knew we would not being seeing Allergist N again. I started doing a lot of research about food allergies in general. One of the places that offers amazing resources is Kids with Food Allergies, including webinars and articles. One of the articles I read was written by Allergist L. I noted in the authors biography that he was a Kaiser allergist, but he seemed to be a little far from where we lived. Nevertheless, I bookmarked the article.

After the failed visit to Allergist S, I did returned to the article and thought again about Allergist L. Kaiser gives only the most basic of information on their website about each Dr. and some of that is useful. What I was most interested in was education and population served (I was interested in a Board Certified Pediatric Allergist).

From there, I did a Google search. I was looking to see if he had done any research and what the research was on. If I had done this with Allergist S, I would have found that he had one research paper on asthma. Allergist N had one paper on pneumonia. Allergist L has done research (and continues to do so) on food allergies. As James has no lung involvement, he needs an allergist that specializes in food allergies.

In general, I don't think it's necessary to eliminate doctors solely on their lack of research, because I'm sure many fine doctors focus on their treatment of patients alone. However, because of the system Kaiser has set up, making it difficult to get information on their doctors, and because, in general, a doctor conducting research is also going to be following the current research, I found this effective.

Finally, I was willing to drive. I live in an area surrounded by better places. If I were a highly qualified doctor, I would rather be by the beach than the desert  - and most of them have that choice. 

I went into our first appointment like an interview, as opposed to Allergist N, where I went in as a patient. And I think this is important. Realize that you can find an allergist for your family; it may take a little legwork, and a little luck.

  

"That Bites:" A Review

Attending Our First Film Festival

Have you ever been to a film festival? I hadn't, so I really didn't know what to expect. The venue was a renovated Spanish Colonial style theater. The main theater's "claim to fame" is being the first theater to show "Gone with the Wind," and we have been to a couple of productions there. I wasn't aware they had a smaller theater upstairs and this was where the film festival was held.

We were given ballots as "That Bites" was being shown with a collection of four other short films either about kids or directed by kids. James found it odd that considering the focus (kids), he and his friend were the only kids (although one other did arrive right before the viewing began). 

On to the Show

"That Bites" is a documentary produced by (at the time) 12 year old Jack Yonover, who, like James, was diagnosed with his allergies at age 10. During the film, you meet a variety of kids, all with different allergies and experiences, and they speak directly about their challenges and experiences in having food allergies. 

Jack also interviews Dr. Ruchi Gupta, so that there is some medical information and background given. 

Finally, without giving away too much, you travel a bit through some of Jack's own medical journey, which honestly, had both James and I on the edge of our seat, being a road we've traveled ourselves.

Here is the trailer to get a taste.

"That Bites!" trailer from Jill Yonover on Vimeo.

The Review

I am going to paraphrase an audience member at my viewing, because I do not think I could say it better myself - Stephen Spielberg was making movies at 12, but I don't think they were as high quality as what Jack Yonover has produced. Truly, this was a fine documentary, and as fine documentaries do, sparked a lively conversation among the audience members at the end.

Ultimately, I think this is an amazing strength of the film - to open up the doors of conversation between those who have food allergies and those who do not. I can easily see this being shared at schools or even among family members and being used as a springboard for discussion.

James's favorite part of the film was how supported he felt, not only in some of the comments made in the film (or especially in some of the establishments highlighted that cater to those with food allergies), but in the discussion held afterward with the audience members. People were shocked that the laws were not more protective of people with food allergies. In addition to him, two other adults shared their experiences with food allergies and how specific examples of dining out. He left feeling not so alone.

My only concern is that the information is presented by teens, and there were a couple of instances where something was said that I felt needed a more specific disclaimer than the general one at the front: a teen who kept his epi-pen in his car, an instance dining in at a resort and the mom needs to return to the room for the medicines. I think these can easily be addressed within the discussion after, but a knowledgeable person should be guiding that discussion, to make sure the proper medical information is presented.

All in all, I hope "That Bites" becomes available soon for wider distribution. I would love to be able to own it and use it for educational opportunities.

Daily Protocol for Treatment of Food Allergies with TCM

I hesitate to post this, not because I hesitate to share the information, but I don't want to give out any mis-information. This is a snapshot in time for one patient. By the very nature of Dr. Li's practice, she works with each patient as an individual. James's protocol has changed nearly every month. What the protocol is for James, I'm sure is very different for a patient of a different age, condition, and response. There are patients with no pills and patients with many more pills. So, please don't look at this and assume that if you or your child were to see Dr. Li, this would be your protocol.

That said, as of today, and at least until my next phone consult, this is James's daily routine:

After eating  (breakfast and dinner), he starts taking pills. He takes them in the order I have shown (although the capsules are mixed together, I've only separated them for the photo. He takes 5 at a time, mixed). He sets a timer for 1/2 an hour, takes the next set (he calls them M&M pills, for visual reasons only, there are 15), sets the timer for 1/2 an hour again, and takes the final 5 capsules. We have found if he doesn't take them spaced out this way, they make him sick (nauseous and heartburn). It's definitely the capsules that cause the upset. He's able to take the Mei Huang 4 without any issues. Dr. Li suggested spacing the dosages out and, as long as he sticks to it, he does fine.

So, each day total, he takes 50 pills over a 3 hour period. This is actually the part of the protocol he doesn't mind, assuming he leaves enough time between doses that  he doesn't get sick.

For those wondering what the pills are for, I can only speak to use for my son and my understanding as it's been explained. Different people may have the same pills prescribed by Dr. Li for different things.

Good Mood Tea: To help anxiety, he hates the name whereas it makes me want to sneak some every now and then

Mei Huang Tea 4: To lower IgE/help with food allergies

Shi Zhen Tea 1A: To help his skin/itchiness/hives

After he's had all his pills, before bed, he showers and then his dad puts Cream III-VB on him.

 This is the part he doesn't like. Previously he used Cream IIIB, which had a texture similar to Aquaphor™, and it stank. In my opinion, it smelled strongly like dirt. I was physically repelled by the smell. He put it on himself. 

Dr. Li wanted to be sure he was getting the cream applied adequately, which meant by someone else. She felt he would be more receptive to this with a second version that has the same medicinal properties but a different base. It's much lighter, both in texture and smell. James says it smells like lemons; I can't smell it. It's a water based cream, so it goes on much more smoothly and lightly.

But, he hates having someone else put cream on him and he hates the green tinge on his clothes and his skin. He doesn't like when Darren affectionately calls him the Hulk.

Cream III-VB: to help lower iGe/food allergies

A month of this protocol (for a 12 year old who is 5'6" and just over 100 lbs) is nearly $800. It is a commitment, both financially for the family and for James, daily dedication.

Holidays with Food Allergies

Is it any wonder that holidays and parties are a source of stress for those with food allergies?

July 4, 2005 Head to toe hives and the start of chronic urticaria

May 27, 2012 Home from a friend's birthday, head to toe hives

October 30, 2013 Day before Halloween and first known serious food reaction

June 30, 2014 Day before his birthday, self-administered epi-pen, Urgent Care visit

October 19, 2014 Flushed face and swollen eyes during Halloween party

And these are the only the incidents I remember or thought to record. So how do you get safely through the holidays?

Have a Plan

James always goes to parties (and holidays) now with his own food. He's become more conscious about if nuts are served, wiping his hands frequently when touching things (which is what happened during the Oct. 19th reaction). We let the host of the party know his allergies and that he'll be bringing his own food. He usually brings enough dessert to share. And of course, he always has his epi-pens. But, he never skips an event because of his allergies.

This is what works for us. James is 12 and the high school (and college) years are not far off. For any tween (and teen) kid, learning to navigate the world independently is what these years are about. For us, food allergies add another layer, but do not negate that need. Depending on the age of your children and the severity of their allergies, you may handle these situations differently. But, having a plan in advance so you are prepared and can relax is the key to being able to enjoy yourself.

Create New Traditions (aka It's only Food)

I firmly believe that I can pretty closely replicate any food tradition in an allergy friendly form my family wants. And have spent a lot of time (and calories) doing so. But, it's only food. I think one reason we get attached is we have memories of having the same food, year after year, throughout our childhood. But, you can certainly repeat other traditions, that can grow in complexity as your children age.

Here's a brief list to get you started of non-food ideas for this Easter:

• Cascarones/Confetti filled eggs (use plastic eggs for the egg allergic)
• Tie Dye
• Get a new game and play it (last year we got an outdoor game but this year, video game, of course)
• Grow real grass in their Easter basket (late for this year, but I got my nieces some cute little pots with faces to grow grass from Target, not good for those with environmental allergies)
• Go for a bike ride/hike/geocache

What do you do to create successful holidays for your food allergic child?

Happy Easter!