October 11, 2012 | 2:20 PM |

The Peanut Allergy That Wasn’t

FILED UNDER: Medicine/Science, Personal Health, food allergies, peanuts, pediatrics

(Biel’s ® Gabriel Machado/flickr)

This striking post by Amy Lischko about her son discovering — at age 15 — that his lifelong peanut “allergy” was in fact simply a misdiagnosis, got me thinking.

Was this an actual misdiagnosis or did her son just “grow out” of the allergy? How many other kids are branded as allergic to peanuts or tree nuts (like my daughter) and go through their childhoods toting Epi-pens on every trip and to every classroom only to learn later that they’re not allergic after all? And is the concept of “outgrowing allergies” masking what was never really an allergy in the first place? Obviously, real allergies are, indeed, real, potentially life-threatening and often extremely scary. But for those with seemingly milder cases (my daughter has never had another reaction to cashews after the first one at 18 months and for the past 6 years has eaten countless items processed “in a facility with” with all types of tree nuts) is there widespread misdiagnosing going on here? I’d love informed comments on this.

In the meantime, here’s Amy’s story posted on HealthCare Savvy:

My son was diagnosed at age one as having life threatening allergies to peanuts. He was given skin tests after what appeared to be a reaction to peanut butter. The tests showed he was allergic to everything. So, we spent the next 14 years religiously keeping him away from all nuts. Being an underutilizer, I never took my son back for further testing as given his history of asthma, it was unlikely he would outgrow this allergy. And, he never had another reaction.

This summer (at age 15) my son went on a canoeing trip in the adirondacks…..miles away from any medical facility. To my shock, it was here that He decided he had had enough of his “special diet” and gave himself a “food challenge” by eating two peanuts. What happened? Nothing. When he proudly announced that he was no longer allergic to peanuts upon returning home, I was ready to murder him. How could he take such a risk? But, after calming down, I also wondered what had happened. Had he been misdiagnosed as a baby? Had he outgrown his allergy? Both his skin and blood tests provided evidence that he has this allergy, didn’t they? We made an appointment with a specialist, someone who could answer all our questions.

This appointment was really what I wanted to write about. Those who know me know that I am an underutilizer of health care services. So I was leery seeing this specialist. Would he want to run a zillion more tests? Would they want my son to undergo another food challenge? Well, not this allergist. He,like me, does not believe in “more is better” as most specialists in the Boston community do. I came with my son’s recent blood work and he said “great, no need to repeat those tests.” He also explained the limitation of those tests. He took a very long history and spent time explaining what he believed was a misdiagnosis of my son at age one.

Once he learned of my interest in health care costs, he spent another 20 minutes telling me why the system is so broken. He believes that a lot of the increase in the number of people diagnosed with food allergies is not due to a real increase but to the need to create more work for the specialists. How could this be? Did I purchase epi-pens and worry about my son accidentally ingesting a peanut all these years for nothing? We will never really know whether he outgrew the allergy or never had one. But for the thousands of new parents with children diagnosed with food allergies, I wonder if there isn’t something that can be done.

A dose of common sense is what is needed according to this specialist….and perhaps some tort reform. We are cautiously approaching all the foods my son has been avoiding for 14 years. Of course he was living fine without them, but not having to worry, and not having to supply every backpack with an epi-pen, will save me some gray hair and health care dollars.

About the author

Blogger, CommonHealth Rachel Zimmerman worked as a staff reporter for The Wall Street Journal for 10 years, most recently covering health and medicine out of the paper’s Boston bureau. Rachel has also written for The New York Times, the (now-defunct) Seattle Post-Intelligencer and the alternative newspaper Willamette Week, in Portland, Ore., among other publications. Rachel co-wrote a book about birth, published by Bantam/Random House, and spent 2008 as a Knight Science Journalism Fellow at MIT. Rachel lives in Cambridge with her husband and two daughters. View all posts by Rachel Zimmerman →

  • Scott Greenberger

    As the parent of a peanut allergic child I wonder why anyone would not have their child re-tested at regular intervals. Approximately 10% of peanut allergic kids grow out of the allergy by age six or seven. Although mine has not we re-test every year and I pray for a day when she does not need to fear food, be separated from friends at lunch or say no to birthday cake or ice cream. As parent I want her life to be as normal as possible and denying any opportunity for that would feel irresponsible to me. If this person would have re-tested she could have potentially avoided years of epi-pen purchases and worry.
    In terms of items “processed in a facility” … eating those is the equivalent of Russian Roulette for someone with a severe allergy. The problem with those items is potential for cross contamination. As a journalist covering health and medicine I would expect that you would already know that. If not then responsible journalism would dictate that you do some real research instead of asking for “informed opinions” from unqualified bystanders.
    This is a sad commentary on the state of journalism.

  • Dianne P.

    I think it is important to understand the mechanics of the body’s immunological response to allergens. Without ever being exposed to an allergen, you cannot show an antigen response to it. In effect, if you have never fed your kid a peanut, a test will always be negative. Then after eating them, if an allergy develops, it can take multiple exposures for the body to create enough antibodies to the protein to show up on a test. Then, the antibodies continue to circulate, which is what elicits an anaphylactic response on further exposure. Some people do outgrow their allergies, which as I understand it, comes about by the antibodies becoming depleted and the body not recognizing the protein as a threat after that point.

  • STK

    I’d have an easier time believing this was about creating work for the specialists if I didn’t also know that there have been some times in the past decade or two when allergists have been in short supply. It does sound like this kid had a reaction when he was 1 and perhaps outgrew it along the way. If he’d ever had another reaction along the way, that might have confirmed it was real. However, the family’s care in preventing an exposure and their avoidance of rechecking the allergy down the road leave things in doubt as to what really happened. I hope the mom involved will inform herself on how to keep outgrown allergies at bay and make sure her son knows as well, plus what symptoms to watch for and actions to take should the allergy reappear (which could happen).

  • http://www.facebook.com/profile.php?id=1662515843 Heather Davidson Creaser

    My son has been diagnosed with many allergies. Our first allergist gave a skin test, and said there was an allergy to eggs, “but not too bad, go ahead and give them to him in baked items, but nothing like scrambled eggs”. For the next year, I fed him as so. Then a second allergist gave him a blood test which the RAS came back over 100! She said to absolutely not feed him eggs. My pedi said, “allergies are not an exact science.” She had encouraged me to NOT get tests. Now I understand why. After being diagnosed allergic to dairy, soy, wheat, eggs, peanuts and treenuts, I really don’t even know if he is truly allergic to the nuts, as he’s never eaten one. My gut tells me he is allergic to nuts because after eating cashews and kissing his face, he gets little hives where the kiss was planted. In the end, unfortunately, I think that is all we have to really go on, our gut instincts. Do your own research and pay close attention to your allergic child.

  • johnjt

    First: Really, the “no need to repeat those tests” statement is ridiculous.

    Since we knew our oldest (son) was highly allergic, we had our daughter tested.
    Result: no allergies.

    Flash forward almost a year and she has a reaction after eating a supermarket sample.

    Get her retested: Highly allergic to peanuts and tree nuts.

    Honestly, I want to see better and more consistent tests and think something is broken in the system too. But without allergy retesting you will not have a clue about the severity or continued existence an extremely dangerous condition.

    Whether in fact the author’s son was never allergic or had grown out of his allergies, she subjected her entire family to undue stress and worry and work – possibly for up to 14 years.

    Anyone who eats in a restaurant with their allergic kids know it is no picnic trying to find a place that is both consistent and safe in their reporting and techniques.

    Second: It needs to be stressed much more that the idea of a self-challenge, out in the woods no less, is akin to playing russian roulette with a gun. If he did have a reaction, it could have been deadly and with no access to medical help. Incredible.

  • Food Allergy Mom and Advocate

    I do not feel her exact reasons for NOT taking her son back for retesting over the years are valid. Was she not adequately informed by her allergist the need for retesting along the way to see if and when her son might outgrow his allergies, which it appears he did (and according to studies, he could have outgrown it as young as age 6). Did she not do her own research, which would have revealed the need for restesting along the way? Without followup visits along the way, I do not believe a doctor can call it a misadiagnosis and I do not agree with her second specialist. One of the main problems is that all specialists are not on the same page, they do not all give the same advice or use the same protocols. I think her story is helpful by showing us the need for good followup visits when diagnosed with any type of life-threatening disease .

  • Andria

    Sadly some of us have had to watch our children almost die so we don’t have the luxury of wondering if we have been misdiagnosed

  • Asthma and Allergy Sufferer

    There is now a new peanut molecular allergy test that tests more than the whole peanut extract. It is a blood tests that tests each protein of the peanut including ARA H 1,2,3,8,9. The results will give you the risk severity for anaphylaxis. This test is the first FDA cleared molecular peanut test. It’s appropriately named, the “UKnow Peanut” test (by Thermo Fisher Scientific)

  • Michael

    Rachel,

    Great to see you touching on the issue of supply driven demand. I believe that this is one of the single most significant factors driving Healthcare costs in this country, and yet it doesn’t get adequate coverage.