With an increase in readership this month — and thank you — this blog has been receiving feedback. Some of it is wonderful and I am glad to refer people who are curious for more information about corn allergy to the University of Rochester Children’s Hospital website.
Then yesterday a different sort of response arrived at a post I had written a few months ago about protocol called NAET, which is short for Nambudripad’s Allergy Elimination Technique. NAET was developed by a chiropractor in the mid-1980s with claims to alleviate allergies. In preparation for that piece I had searched the medical literature for peer reviewed studies and had interviewed a board certified allergist.
A reader believes that was the wrong way to research the topic. I polled several people for ideas on what to do with this:
Of course, board certified allergists would not consider NAET — they have little understanding on how to treat the whole body. Treating allergies with steroids and antihistamines for eczema can often “push” the condition further into the body resulting in asthma. It is very easy to condemn what they have not researched or tried for themselves. Oncologists continue to poison with chemotherapy because that is what they have been trained to do. Fortunately individuals are becoming frustrated with what conventional medicine has been offering and decide to explore and investigate alternatives. Perhaps everyone needs to be open to what is out there, some therapies have been around for centuries and do, in fact work. You obviously know nothing about NAET. My daughter has allergies diagnosed through blood and skin testing and we have used many therapies and several in combination with conventional ones. NAET was quite helpful.
Some people suggested refuting this point by point, others proposed deleting the comment, and someone advised a diplomatic to each their own response. Each of those ideas has its merits. Yet I want to avoid a backfire effect, deletion could reinforce this person’s ideas about closed-mindedness, and the diplomatic approach seems to validate NAET. There will not be time in life to answer every comment in earnest but maybe this is worth doing once.
Usually the real dilemma is a difference in opinion about what counts as meaningful evidence. Add to that polarization — the Internet is great at polarization — and two people talk past each other rather than having a conversation. One sentence stands out from that reader comment: “fortunately individuals are becoming frustrated with what conventional medicine has been offering and decide to explore and investigate alternatives.”
I do get that sentiment. Let me share an example.
Conventional medicine does not offer much for an anaphylactic case of Oral Allergy Syndrome (OAS). One of the frustrating things is that although ordinary household cooking can break down the allergens that cause OAS— no one knows how much cooking is necessary.
The American Academy of Allergy, Asthma, and Immunology hosts a column called Ask the Expert where people write in with questions about allergies. In 2012 one of those questions and answers asks about an OAS allergy. Its gist is my patient is allergic to raw bananas — can she eat banana bread safely?
A ten paragraph reply with two medical journal citations amounts to Not sure.
The technical term for a food allergy that becomes safe to eat after cooking is heat labile allergy. Some food allergies are heat labile; some are not. I have written about heat lability in terms of a couple of other foods. There have been quite a few laboratory experiments in recent years that test how much cooking is needed to make several other heat labile allergens safe to eat, except no laboratory has tested OAS allergens. Getting back to that unfortunate patient who was hoping for information about whether she could eat banana bread: six years later science still has no answer for her.
You might wonder, “Why not just try banana bread and see?” Most cases of OAS are mild so that works for most people but the stakes are higher for individuals who have a history of anaphylactic OAS because if things go wrong then the likely outcome is an ambulance ride to the hospital; the worst case scenario is death within minutes.
Is a slice of banana bread worth that risk?
I also have anaphylactic OAS. The condition affects different fruits in different people so I have no problem eating bananas but I cannot eat apples. I also have to avoid a lot of fruits botanically related to apples: pears, plums, cherries, peaches, nectarines, raspberries — the list is long enough that getting complete nutrition is a challenge. These are unregulated allergens so a lot of processed foods are unsafe. About once a year I take the chance of seeing whether I can eat something and it was a joy to discover that when I follow strict cross-contact precautions and simmer quinces with honey and rosewater for three hours it makes a marmalade that I can eat. Both quinces and roses come from the same botanical family as apples so that was a high risk experiment.
Finding a new safe food is a big deal on a medically restricted diet. Whenever it happens part of me wants to shout the good news from the rooftops. Yet there is a catch.
That was not a scientific experiment. The results are anecdote.
My kitchen does not have the laboratory equipment to run an assay and test exactly what happened on a biochemical level. That amount of cooking might not be good enough for someone else who has birch pollen-Rosaceae anaphylactic OAS. There are other cases of this condition which are even more severe.
If I am honest then I have to be really careful explaining the marmalade news to other people with a similar diagnosis. The wording goes along the lines of this worked for me but there is no guarantee it would work for everyone. Here are my notes; try it at your own risk. Sometimes a grassroots network of patients trading information is the best we can do because science is silent about whether people with this immune malfunction can have banana bread or marmalade.
So this sentence speaks to me:
Fortunately individuals are becoming frustrated with what conventional medicine has been offering and decide to explore and investigate alternatives.
It continues, “Perhaps everyone needs to be open to what is out there” and I do agree. The thing is, keeping an open mind means holding alternatives to exactly the same standards as conventional medicine. This is why I make so few claims for the marmalade recipe. What I want to see is a proper laboratory and controlled experiments on OAS allergens, preferably several laboratories to confirm the results. Earlier this month I wrote an email to a nonprofit organization that funds food allergy research, asking them to prioritize investigations into OAS allergen heat lability. At that time I had no intention of mentioning it in the blog; it was a genuine request because the information would make my life easier. A staffer wrote back last week with an encouraging note. Now I need to find a team of scientists willing to write a grant application. This is slow going but this is how it is done.
At the end of the journey maybe other people will be able to use my marmalade recipe with confidence. Maybe I could eat a slice of apple pie. Maybe that woman from the Ask the Experts letter will finally have her banana bread. These seem like such simple expectations. People who have never lived with this diagnosis often have difficulty believing that the slightest mistake usually means a trip to the ER.
Looking back at the post about NAET where that comment was made, one thing that stands out is how it devotes half the space to an interview with David Stukus, M.D. That probably looks like I was heavily dependent on his judgment. Actually I wrote to Dr. Stukus after researching everything else. He was generous with his replies so I posted them in full.
I am open to the concept of a breakthrough in allergy treatment. Sometimes science tests old remedies in other areas of medicine and gets surprisingly good results. Yet I want to see those lab results and more before I rub my eye with a salve from a recipe from an Old English manuscript. A recent Nobel Prize went to Youyou Tu after she rediscovered a treatment for malaria in a Chinese text from sixteen centuries ago. Of course, medical science consists of more than trusting old advice: it takes thorough experimentation including clinical trials to verify the effectiveness.
That was where NAET was disappointing. This was the heart of the post:
A reasonable question would be what percentage of patients experienced a reduction of symptoms in clinical trials? The PubMed database indexes no clinical trials whatsoever for NAET.
Calling something a protocol might make it sound impressive but does not make it science. Evidence makes it science. In thirty-five years the only evidence for NAET in the medical literature are two case studies. I would not rub a salve in my eye without better evidence than that and I would not risk anaphylaxis either; anaphylaxis during alternative medicine treatment has been known to be fatal. Testimonials may persuade some people but I always wonder if a treatment is so good then why would its enthusiasts hesitate to publish in normal medical journals? If medicine were closed to unconventional ideas then Youyou Tu would not have her Nobel Prize.