Just last weekend we went to an end-of-season celebration for our sons’ baseball teams. It was held at a small amusement park and there was a short awards ceremony before the BBQ where the kids got medals and small trophies.  The boys were thrilled and had a great time.  But when the line started for the BBQ, so did my worries. 

Our older son remains allergic to dairy and egg now at age seven.  I could see the line cooks slapping cheese on every hamburger in site.  Who knew what was in the hot dogs?  So I ventured up to the front of the line to see what I could do.  I asked if I might be able to see the package for the hot dogs as we’ve found that milk is in many brands of hot dogs.  The young girl said she didn’t know where the package was, then she turned to ask the “guy in charge” who shouted back to me, “Hey lady, they’re just regular hot dogs!”  Ugh. I gave up and went back to stand with my family in line. 

Earlier, at home, I had tried to think this whole thing through and packed a few dairy-free organic hot dogs.  They’d been on ice in my backpack for about five hours now--not something I felt good about. So now, I ventured up to the front of the line and asked a kind, older gentlemen if he could warm these up on the grill for me and keep them in the tin foil.  He obliged me and about ten minutes later I picked up the hot dogs.  But they were not even cooked.  They were just the other side of cold, kind of almost warm.  My son took a bite or two, but we decided to just make him a hamburger when we would be home.  So for now, we gave him a pile of pickles which contented him for the moment.

This was probably one of the more difficult situations that I’ve encountered with the dairy allergy--one where everyone is eating the same thing and my son cannot participate. At smaller, family BBQs, it is easier to check a label or ask for special consideration.  Even storing a hot dog or hamburger from home in a refrigerator is a convenience that can make all the difference--then popping it in a microwave for one minute or so.  But these options weren’t available to us at this amusement park BBQ.

At times I like these I realize that people just have no idea.  It is weird-- I too have trouble believing that a common food can be so harmful to some people, like my beautiful son.  I know many people, especially those who don’t have children with food allergies, have strong feelings of disbelief about others’ food allergies.  I’ve even seen stories on TV and on the Internet saying that many, if not most, food allergy tests produce false positives.  While there is clearly a lot of doubt, ignorance and skepticism about food allergies, I must admit that I still, at times, struggle with the “disbelief” grief stage that my husband discusses in his chapter in my book. 

My own disbelief got the better of me this past spring.  After my sons had eaten egg baked in bread a few times over the years, I convinced myself they were outgrowing their egg allergy.  So I let them try a small bit of hard boiled egg white not long after Easter. My younger son spit it out saying it was disgusting. My older son said he liked it. Within ten minutes he wanted to vomit and started sneezing uncontrollably. Then within twenty minutes his eyes got itchy, he developed a lot of mucus, became extremely tired and then said his chest hurt. After giving him two doses of antihistamine and talking with our allergist over the phone, I was instructed to give him the Epi-Pen and go to the ER.  I am somewhere between ashamed of my actions and dumbfounded by my own disbelief.  But the lesson taught us that disbelief is real and dangerous. It also helps me to understand why others feel this way.

Over the next ten, twenty or more years, more and more people will probably develop food allergies.  That cook who shouted at me, “Hey lady, they’re just regular hot dogs!” may one day have a child with a food allergy and then maybe he’ll think back to all the times he brushed off questions about food that to him may have seemed silly or bizarre. Or news reporters, anchors, talk show hosts who report on food allergy disbelief stories with an air of superiority and insinuation that those who think they have allergies are just a little crazy, may one day understand, when their own children, grandchildren, nieces, nephews or even themselves develop a serious allergy.  Maybe when more scientists or government officials’ family members develop food allergies then more funding, research and answers will be created. Until then, our virtual food allergy community around the world needs to continue to support one another.

It has been my experience that food allergy tests can be a bit unreliable. It is best to use combinations of allergy tests to get the most accurate readings and results. Normally you will have to ask your child’s allergist to do more than one type of test. You can even request that your doctor order the results to be sent to more than one lab for more accurate readings. Further, consider getting a second opinion from a different allergist. 

Sounds like a lot of work? Perhaps. But consider the impact of food allergies on your life and your child’s life. Eliminating a single food from your child’s or family’s diet can be a lot more work and for a much longer time. It can also contribute to stress in your life and in your child’s life because it affects both social life and school life. When food allergy testing normally comes around every year or two, it isn’t unreasonable to make sure the results are really accurate since you'll have to live with them for a long time. 

The following is a summary of food allergy tests that you can seek out for your child.  Due to the inaccuaracy rates of single tests, combining results can give you a clearer picture of your child’s situation. Further because different labs and doctors can produce different results from the same tests, don’t be shy about getting a second opinion. Call your insurance company about coverage for additional tests. Share the test results with all the doctors involved to they can learn as well. Any doctor who gets annoyed that you have asked for a second opinion does not have your child's health concerns first.

• Skin prick tests: This involves pricking the skin with various allergens. The benefit of this type of test is that it will probably not give a false negative meaning if the child has an allergy--it will appear. But the con is that it can give a false positive meaning that it may show an allergy when in fact the child can tolerate the food. 
• Blood tests: Several types exist such as the RAST (Radioallergosorbent Test) and ELISA (enzyme-linked immunosorbent assay).  The results can be misleading in that sometimes the child will be allergic to the food but the test will result in a negative result.  The blood taken from the child’s arm can be split and sent to two different labs for more accurate results.  You will need to request that this be done. 
• Kinesiology tests:  This is done by homeopathic physicians using a small vile of the allergen which is held in the hand of a patient while muscle strength is tested. It is a non-invasive non-painful test and easy to do--but the interpretive nature of the results may put some people off as to its validity. 
• Challenge tests: This test involves eating the offending allergy-food in the doctors’ office.  It is normally recommended when BOTH blood and skin prick tests are negative.  It is a lengthy test (3-4 hours most of which is waiting) and is normally done when there is a very good chance the child has outgrown the food allergy. 
• New tests in the future:  “A new kind of blood test could someday help doctors zero in more definitively on who is most likely to have allergic reaction to foods. Phadia AB, a maker of allergy tests, has developed a test, called Component-Resolved Diagnostis (CRD) that can determine which molecule within a food is sparking the antibody reaction. In the peanut, for example, only three of 14 different molecules are associated with anaphylaxis-causing reaction, according to the company. CRD has not yet been submitted for approval by the Food and Drug Administration, but it is in use in Europe…In the Manchester study, for example, the researchers found that almost all of the children who were highly allergic to peanuts reacted to a specific protein call Ara h 2…Knowing more about what specific molecules cause allergic reactions could help scientists understand more about the severity of allergic reactions, and someday help efforts to develop treatments to trick the immune system into behaving differently.”[1]
• Delayed allergy tests: Most allergy testing is for immediate allergies (with symptoms of hives, anaphylaxis, vomiting, breathing, swelling, rashes, eczema). But for many the symptoms are not so obvious--making the connection between cause and symptom downright difficult.  Delayed food allergies can be tested for through blood testing (only) as described above. But instead of searching for IgE antibodies, the lab must look for IgG or IgA antibodies. You will need to find an allergist who is knowledgeable in this area.  Parents and children dealing with asthma, autism and ADHD often have delayed food allergy antibodies. 

In summary, take your child to an allergist for allergy testing. Ask for more than one kind of test and consider getting a second opinion. Share results among the doctors and labs.  Understand that immediate allergies are different from delayed allergies, but both can affect a child's life drastically.

[1] Beck, Melinda, The Wall Street Journal, 1/26/2010, http://online.wsj.com/article/SB10001424052748703808904575025013194645130.html

My kids are still young, ages five and six, as of this writing.  Even so we’ve been through our fair share of allergy tests.  My boys have each had several skin prick tests and one blood test each.  One son has had a challenge test and the other is currently scheduled for one. 

At the last blood test, the blood-taking nurse said to my five year old, “So you don’t feel so good after eating certain foods, huh?”  Then she laughed heartily.  I was dumbfounded.  I think my five year old was too.  I sat on the chair holding him on my lap and we said nothing.  We just looked at her back as she had turned around after laughing to enter a few items into her computer.  How could a nurse or anyone be so insensitive as to ask a question like that when she knows he has food allergies and then laugh out loud?  What was she laughing at?  Our misfortune?  If she wasn’t about to take three little vials of blood from my “baby” I might have just confronted her on why she was laughing. 

Aside from the lack of personal tact, there are other frustrations that I have with food allergy testing.  Specifically, skin prick tests can show false positives, meaning it may show that you are allergic to x when in fact you are not.  Further, the blood tests can show false negatives, meaning it may show you are not allergic to y when in fact you are.  Then there is the ultimate “challenge” test where you child eats or drinks the food in a substantial quantity, which you have studiously avoided for the past few years. 

When my older son went in for his dairy challenge test, his blood test had been negative but the skin prick was positive.  The doctor said he was, “90% sure he would not react during the challenge test to the dairy.”  But, he did react and had to receive epinephrine in the doctor’s office.  Our current allergist advised us that she would only do a challenge test if both the skin prick and blood tests come back negative.  This seems to make more sense to me so we are on our path to this test now. 

While a definitive, non-risky test is something we all would like, I’d like to learn if there is any consensus from mothers, fathers or people who undergone the tests themselves, like teenagers, on what tests work best.  Please comment on what tests or combination of tests and results seem to have been most accurate in your experience.