Photo Credit: Tatiana Stepanishcheva

In part 2, Dr. Warren discusses the underdiagnosis of coconut allergy and provides strategies to improve access to emergency treatments.

In part 1, we explored a study highlighted in Annals of Allergy, Asthma & Immunology that underscored the underdiagnosis and insufficient management of coconut allergies in the US. Led by Christopher Warren, PhD, the research surveyed 78,851 respondents between October 2015 and September 2016, revealing a prevalence of 0.39% for convincing coconut allergies, with adults showing higher rates than children. However, formal diagnoses were limited, indicating potential medical confirmation and treatment gaps.

The study emphasized improved awareness, diagnosis, and management strategies. Dr. Warren stressed the rising prevalence of coconut allergies and cautioned against potential sensitization risks from increased coconut product use, particularly in infants with compromised skin barriers.

In part 2, Physician’s Weekly (PW) spoke with Dr. Warren about the underdiagnosis of coconut allergy among this patient population, and he provided strategies to improve access to emergency treatments. 

PW: Many individuals with a convincing coconut allergy did not report receiving a physician diagnosis. How will that impact patient care and outcomes?

Dr. Warren: Because we don’t always have patients in front of us as epidemiologists, and we can’t do an oral food challenge—which puts us in good company because most clinicians are not doing oral food challenges even when they are warranted just because of all the logistical complications—we must guess about whether they do have these allergies. Physicians often create different categories to get good estimates, such as patients reporting allergies. However, they don’t necessarily report a rock-solid reaction history indicative of an IgE-mediated reaction. Physicians have the reported case definition and a convincing case definition where patients say they’ve got the allergy and they’re reporting that their most severe reaction to coconut does approximate something likely to be IgE mediated.

Physicians should then consider a seemingly convincing coconut allergy or a subset where it’s a convincingly IgE-mediated coconut allergy and ask the patient if a physician diagnosed it. That requires skin pretesting, blood testing, or oral food challenge. For patients who report a coconut allergy, it meets the convincing criteria, and they have a physician diagnosis; physicians can be pretty sure those people do have a coconut allergy.

The thing about allergies is that you only experience acute symptoms after eating the food. Still, the experience of being a food allergy patient does have other psychosocial and economic effects for the rest of your life. These patients who think they have allergies must get confirmatory testing and have access to confirmatory testing.

Sometimes, there are cost-related concerns; other times, it’s hard when folks can pay for it and have good insurance. Patients struggle to get scheduled, find an allergist near them, and get that on the calendar. Often, there’s a 6-to-9-month delay in seeing a specialist. A lot of times, patients feel they made it so far with an allergy that they decide they will continue avoiding coconut. It’s easy enough to avoid compared to other food allergies.

Many people think they might not even bother, so they cannot outgrow it. Our data suggest that at least a quarter of folks are outgrowing their coconut allergy, but if you never retest, you don’t know if you’re one of those people. We need to make it easier for these folks to get access to confirmatory testing so that they can improve their quality of life and basically instantaneously cure themselves of allergy by telling them, no, you’re not allergic anymore.

Are there any strategies to improve awareness and access to appropriate emergency treatment?

I think cost is a barrier to epinephrine in many places. Some states recently passed a law capping the copays for epinephrine to a reasonable amount to try to get around these issues of exorbitant medication costs.

Another thing is that several alternative modalities of epinephrine have been under investigation. Patients often think of epinephrine as an autoinjector or a needle with epinephrine in an ampule. You must draw it up and administer it yourself—which very few people do because it’s hard to do that if a patient is not trained, and then it’s even harder to do that in the moment of a very stressful acute reaction.

To address that, several products are now very close to being considered for FDA approval. One is a sublingual strip, and another is like a nose spray like Narcan.

Hopefully, These things will help patients soon, and then obviously, we just need to continue efforts to keep the cost down. There are more and more efforts to have what we call stock epinephrine available in places like schools and airports, similar to defibrillators in public areas.

Read part 1 here, in which we explored a recent study that underscored the underdiagnosis and insufficient management of coconut allergies in the US.