Applying Food Allergy Science to Your Food Allergy Life

Last Saturday, I was honored to present for the joint Seattle Food Allergy Consortium (SEAFAC) and Washington Food Allergy Eczema Asthma Support Team (WA FEAST) conference in Seattle, Washington. A huge shout-out to Kelly Morgan for doing an amazing job at organizing the afternoon sessions!

I have posted my presentation slides from the conference through Slide Share. Feel free to take a look!  http://www.slideshare.net/JessicaMartin25/2015-1114-wafeast-applying-food-allergy-science-to-life

I hope to update with more soon. I learned about several research studies currently recruiting participants in the Pacific Northwest. This could very much apply to my local crowd in Oregon!

Perhaps one of the most thought-provoking sessions pertained to anxiety and food allergies. It isn't an easy discussion by any means, but very necessary given its prevalence. My gut feeling is that this issue has been ignored for far too long and very much needs to be raised to the forefront. Stay tuned!

Food Allergy Conference in Seattle Nov. 14 - I'm Going!

For those of you in the Pacific Northwest, a wonderful conference is happening this weekend in Seattle! It is a joint event between the Seattle Food Allergy Consortium (SEAFAC) in the morning and Washington's food allergy support group - Food Allergy Eczema Asthma Support Team (FEAST) - in the afternoon. It isn't too late to register.

For my part, I'm excited to present for FEAST on how you can apply food allergy science to your food allergy life! My hope is that everyone (from newly diagnosed to dealing with food allergies for years) can come away with a better understanding of the science, its presentation in various media outlets, and practical tools for evaluating and applying science to everyday life. Sure to make a cameo are various studies from LEAP to your dishwasher's role (or not?) in allergy. I'll also mention how science can be used to advocate for yourself or your child and beyond.

More details on the joint conference:

SEAFAC is a group of world-class food allergy physicians and researchers in Seattle. I'm excited to hear the latest research findings and also hear about clinical studies happening locally! My talk in the afternoon should dovetail nicely with SEAFAC's presentations. 

Details on their morning symposium.

WAFEAST is a great local support group for those who are dealing with any of a triad of allergic disorders, which includes food allergy. I'm looking forward to meeting new friends to the north! The agenda features a stellar line-up of individuals, and I'm truly honored to be a part of this group. I know that I will learn a lot this weekend and I hope that you do, too! Huge thanks to Kelly Morgan and all other volunteers making this happen.

PS - Huge shout-out to all going to the Food Allergy Blogger's Conference in Denver this weekend. I will miss you!

What the teal pumpkin means to me

I am proud to introduce the very first blog post from my son, “JR" (name changed to protect his identity). JR is a second-grader who deals with many different food and non-food allergies. He wants to tell his school and the whole world about the teal pumpkin project! - Jessica

"JR" decorating his teal pumpkin at the Portland Food Allergy Research & Education Walk.

Some people in the world have allergies. I have allergies also. My Mom and me are talking about allergies at Halloween. We should have teal pumpkins because teal is the color for food allergies. Trick-or-treating scares me a little bit because I might get an allergy. We need to be careful about the food. I still like trick-or-treating because I can trade the food that I’m allergic to. Every Halloween, we put the teal pumpkin up. The teal pumpkin means that our house has treats that are not food. They are little toys for kids who have allergies so they don’t have to trade the food! I feel very happy to have kids not have allergies. So this Halloween will you put up a teal pumpkin?

For more resources and to take the teal pumpkin pledge, please see Food Allergy Research and Education! You can take the "pledge" and also print off teal pumpkin flyers for your door to let trick-or-treaters know you have non-food "treats" available.

The TEAL PUMPKIN PROJECT and the Teal Pumpkin Image are trademarks of Food Allergy Research & Education (FARE).

Responsibilities of an academic researcher/writer - new piece at Asthma Allergies Children

New piece at Asthma Allergies Children

Myths abound when it comes to food allergies - no doubt about it. Even worse is when the popular media feeds the myth machine. Science journalism is tough because the work needs to be readable, factually accurate, and give non-scientist readers a sense of its significance and potential impact without over- or under-selling the complicated science itself. In other words, science writers translate what seems like a whole other language (academic journals) into something average human beings can understand and appreciate. When done well, science journalism/writing is a work of beauty. Some days, it feels about as rare as winning a Pulitzer Prize.

Most science writers are knowledgeable about science, but are not scientists themselves. Mistakes happen, and scientists endlessly gripe about how the media seem to get it wrong more than they get it right. Scientists who also happen to write for the popular media are a rare, but powerful voice. I love the branding of The Conversation - academic rigor, journalistic flair - because I want to believe it. Is this finally a media outlet that can marry those two worlds?

Academic rigor, journalistic flair?
By Greek , possibly Athenian (Princeton University Art Museum) [Public domain], via Wikimedia Commons

I'm now skeptical after reading "The myth of flying peanuts: not so deadly after all." I expected so much more from author, Tim Spector, who has both serious science and writing credentials. You don't get to be a professor at a well-known institution by making unsupported claims in your peer-reviewed journal articles. Why should it be any different in the popular media? Those rare, mythical Centaurian-like creatures are in a powerful position to influence change for the better in the media. Unfortunately, they are also in a position to do incredible harm when they appeal to their baser media flair side. Scientists shouldn't get to take a vacation when they don't have the threat of peer-review. I wish we lived in a world where regardless of a person's credentials, their work could be judged by the merit of their arguments. We don't live in that world. Appeal to authority speaks loudly because people just don't have the time or energy to vet everything for themselves.

I've vetted "The myth of flying peanuts: not so deadly after all" for you at Asthma Allergies Children in the following piece - “Rigor” Mortis: Post Mortem on an Airborne Allergy Article.

A big thank you to editor, Henry Ehrlich.

Communication Breakdown - No, I Didn't Say Treatments are Cures

What's quoted in the media isn't always what it seems. Unfortunately, I was reminded of this because of a misquote involving me that reared its ugly head after googling "Jessica Martin food allergy." (Always good to occasionally google yourself to make sure all is good with your public, digital self).

The good news? The Food Allergy Sleuth blog is the top google hit (yay! I'm #1)!

The bad news? Discovering a misquote floating on the internet from my foray into being the science interviewee (at least it was on page 2 since most people don't go beyond the first page, right? RIGHT?!). In the words of the infamous Homer, "Doh!"

Photo credit: Flickr user hobvias sudoneighm

So what went wrong?

"Allergy Moms" at the center of a food revolution?

As I've gotten older, I've started paying attention to the quirks of marketing. Ha! No more subtle subliminal selling of my soul to big ______________ (fill in the blank with:   pharma, food, agriculture...), right?

In midst of my ten minutes of half-hearted browsing before purging my "Family Fun" into the recycle bin of broken Pinterest Mommy dreams, it was the series of ads that literally leaped off of the page and into my consciousness. Are these ads suggesting that allergy moms are at the center of a food revolution?

Not so fast... the articles are great, but what do the ads say?

Q & A - Clinical Research - Food Allergy Treatment Talk

This past week, I led a question and answer session with the private Facebook group, Food Allergy Treatment Talk. The following Q&A is published with kind permission by the administrators of the group. Much more discussion followed that is not published on this blog to keep responses anonymous. I highly encourage anyone thinking of participating in clinical research to take a look. We only advance our understanding, treatments, and potential cures through those choosing to participate in clinical research - altruism at its best!

This discussion couldn't have come at a better time as FARE announces the beginning of a clinical network that will help organize and speed discovery toward treatments and cures. I'm sure more will follow on how this network will achieve these goals!

Questions and Answers

1)   Clinical studies vs. clinical trials: is there a difference?

Dire Consequences from Health Reporting: Portlandia-Style

I love when humor draws attention to much deeper issues, especially those I'm personally invested in like societal understanding of science. While catching up on past episodes of Portlandia, my stupor from automatic sequential episodes of Netflix'ing  was broken by this brilliant little diddy (by the way, who in the hell at Netflix decided this was a "good" feature. CURSE THEM. I hope Portlandia makes fun of binge watching soon. Oh wait. I think they already did):

Portlandia, Season 4, Episode 1 - Death By Confusion sketch

Working in Portland, Oregon as a biology instructor gives me ample anecdotal evidence that Portland is a health-crazed hotbed of all things "woo" and lifestyle choices based on partial scientific evidence. Then again, maybe this isn't just a "Portland" thing. Many of us in the global food allergy community are continually frustrated hearing the media reports of scientific findings that seemingly contradict each other. Seriously - Is Vitamin D "good" or "bad?" Should children consume or avoid nuts to prevent food allergies?

The deeper issue here is that the scientific process and how scientific findings typically get reported in the media are generally at odds with one another. What the Portlandia sketch highlights is that most people interact with scientific findings through a prettily packaged, media filter based on some personal emotion attached to the topic. "I read it in the New York Times..." or "I heard it on NPR..."  Science is fact-based, but the media is typically emotion-laced facts. Emotion-laced facts are not in and of itself "wrong," but it sets up an inherent bias in that we tend to consume the information that supports our preconceived notions (as if I need an excuse to eat more chocolate, right? More on chocolate science at the end of the post). Well-designed scientific studies aim to take bias out of the equation as much as possible.Where we get into trouble is when media reports on the same topic of research disagree. How many times have media reports presented conflicting science on whether red wine/chocolate/coffee/beer/eggs/etc is "good" or "bad" for you?

And this gets to another point where science and media reports of science differ. Science is a slow and steady process with a whole lot of nuance, whereas media reports of science, rapidly distill partial understanding of natural phenomena as if it were ultimate, irrefutable proof. Any one scientific study is not enough evidence to change behavior/medical advice/etc. Only when a topic has been researched through many different studies through several different approaches do scientists feel comfortable saying, "yes, this is how we believe x, y, or z is happening, and people should do a, b, or c as a result." This is scientific consensus. In the media, however, scientific findings often focus on one novel study at a time instead of the slow steady zigzagging path toward consensus. Nuance and consensus often get lost in translation, and they don't make "exciting" headlines. Consensus may have been a novel report ten years ago along with the three other competing ideas of the day that were subsequently shown to be false. I'm tired of the media making scientists look bad and unreliable.

The great irony of "death by confusion" is that overstating any individual scientific finding in the media as if it were ultimate truth backfires when the next overblown claim gets reported six months down the road. While the skit itself overblows the end result (I hope?) of this back and forth reporting, I do think that the real world effect on people is more stress and anxiety rather than less. I want real hope, not false hope.

Some basic strategies to be a good consumer of science in the media:
1. If you read articles from mainstream media channels, look for the primary source (most likely a scientific journal article). If the article fails to link to the primary source, be very skeptical.
Example media report: People Magazine
Primary source: New England Journal of Medicine

2. Read AT LEAST the abstract (research summary) if not the whole primary source if it is freely available. Do the results/conclusions seem in line with the media report?

3. Do any credible educational, research, and professional organizations with a medical board comment on the topic? In the food allergy world, this means FARE, AAFA and KFA, FAACT, AAAAI, and ACAAI. The magazine, Allergic Living, also provides great coverage of scientific findings!

Post script:
A must read published two days ago at io9 showing science reporting without due diligence:
I Fooled Millions Into Thinking Chocolate Helps Weight Loss. Here's How. By John Bohannon

Good coverage by NPR that also highlights the controversy of the "fake" chocolate study.

Love it or hate it, I have a feeling this will be a case-study for science journalism in the years to come.

Funding better "biomarkers" for food allergies

Update 5/1/15: Congratulations on surpassing the $50,000 funding goal before the April 30th deadline! Here are two wonderful summaries of the effort: Caroline Moassessi of Grateful Foodie and Henry Ehrlich at Asthma Allergies Children weigh in.

When our food allergy journey started out, one of the most challenging things to wrap my head around was allergy testing. I distinctly remember looking incredulously at our allergist and thinking, “You mean to tell me that a “positive” blood test or that giant hive from a skin prick test doesn’t necessarily mean our son has a REAL food allergy? What good is that?!”

Two common allergy tests rely on the IgE antibody as a "biomarker." The tips of the IgE antibody recognize specific food proteins, such as those found in a peanut. Blood tests measure the amount of IgE for a specific food that is found in the blood and skin prick tests look for the result of a food protein binding to IgE attached to a mast cell in the skin. The release of histamine (among other chemicals) causes the wheal or hive in a skin prick test. Image source: Atlas of Allergic Diseases

What I have learned over the course of several years is that there really are no great tests for food allergies – i.e. “biomarkers” –aside from actually consuming the food (oral food challenge supervised by a clinician). The two common current methods of testing - blood tests measuring food-specific blood IgE levels and skin prick tests that scratch the allergen into the skin surface are not a great tests because they frequently give “false positive” results. A “false positive” means that a person may test “positive,” but truly isn’t positive should they actually consume the suspected food. Frustrating. On top of this, most current testing methods that rely on IgE as a “biomarker” cannot predict how severe the allergy is. The only sure way to test for a suspected food allergy is to go to your allergist’s office and perform the supervised oral food challenge – you know, the test where you actually eat the suspected allergen and wait for a response. Having done this with my son several times now, I can’t stress enough just how stressful this stressful test is. There has to be a better “biomarker” – a test without the stress and risk of a reaction that can better predict an allergy and its severity. 

Image source: Selena Bluntzer from Amazing and Atopic

To help solve this problem, Dr. Xiu-Min Li, Professor of Pediatric Allergy and Immunology at the Icahn School of Medicine at Mount Sinai, and board-certified allergists Dr. Paul Ehrlich and Dr. Purvi Parikh designed a collaborative, practice-based study whose primary objective is to figure out better biomarkers of allergy (details of the study and how you can directly fund the study).

What makes the current peanut allergy prevention study so much better than past studies?

Update (2/27/15): Because of the concern among parents who have children with peanut allergies, the Kids with Food Allergies Foundation has issued the following statement. Please take a read. New Peanut Allergy Study Does Not Say Parents Are to Blame

Every now and again, a study comes along that changes things, and I truly believe that the Learning Early about Peanut Allergy (LEAP) study by Du Toit, et al.¹ will usher in an era of solid evidence-based guidance in terms of infant dietary recommendations and a much needed "benchmark" for designing future studies addressing allergy prevention. This study is only the first step for re-writing the guidelines that have yet to make it into medical practice. Contrary to headlines, actions to “feed your infant peanuts” should not be changed overnight without working with a healthcare provider first.

Before I get into why I feel this study truly changes things, I want to convey my initial emotions surrounding this study because I know that I am not alone. Even though I am scientist, I am also a mom to two young boys. One has multiple life-threatening food allergies and the other is at high risk of developing life-threatening food allergies. My oldest guy with allergies, “JR,” who is a first grader this year, is the inspiration behind this blog. You could say that because of JR’s many life-threatening food allergies, fear has been my constant companion, both for JR who could violently react to traces of allergen and his younger brother, “Luke,” who is at risk for developing life-threatening food allergies himself.

As a parent, I want nothing more than to do everything in my power to prevent food allergies for Luke. The fact is, the current advice has always been a “best guess” with very little hard data backing it up or scientific understanding of how our immune system learns to tolerate harmless foods in the first place. Within the last month, Luke gleefully blew out the three birthday candles lighting his dinosaur cake. To me, those three candles represent more than just a third birthday. To me, they symbolize a tinge of regret in light of new evidence from the LEAP study. In spite of a few food allergy scares while introducing solid foods, Luke currently tolerates all foods he has tried.  Conspicuously missing from his palate are peanuts and tree nuts. Based on “best guess” medical advice from our allergist, we decided to wait until three years old to introduce peanuts and tree nuts. We did everything “right,” and yet…

For the “emotional” part of me, the results of this study feel like a double whammy of fear and regret. Rationally, I know we’re – and by we’re, I mean parents, caregivers, clinicians, scientists, etc. - just doing our best, following the best advice/evidence, hopefully preventing fears from manifesting into reality. There’s fear and regret that perhaps I haven’t done enough to prevent a second child from developing allergies.  Then there’s fear of even having those allergenic substances in the house for an already-allergic child who could react with just a tiny trace of peanut or tree nut. Could I live with the regret of causing a life-threatening reaction because I failed to adequately clean up after a messy toddler in the name of prevention in my own home?! Damned if I do, and damned if I don’t, I guess.

Beyond emotion.

As human beings, we tend to interpret information with our "hearts" first and let "reason" come later. And many people never even get beyond that initial "heart” interpretation.  I acknowledge it’s ok to have these feelings (and I hope that other allergy parents/caregivers out there do, too!), but I hope to illuminate those dark places where fear and regret lurk. This study was aimed at preventing peanut allergy in infants at high risk of developing food allergies. If you are already dealing with a food allergy, this study does not apply to your situation. Even though this new research can’t help my family or maybe even your family, I am overjoyed that we have the beginning of how to prevent allergies for other children! Refrain from reading any and all article commentary from non-experts to avoid the “I told you so” and “stupid, fearful parents for not feeding your kid our nation’s best, right-to-eat it anywhere, delicious, nutritious snack.” These comments are examples of ignorant people wrongfully interpreting scientific findings through a way too generalized media filter to support what they already “believe” to be true.  Science is not about what we “believe” to be true, but what we “know” to be true. And what we “know” to be true for an entire population of human infants is not determined by this one study. Far from it.

What makes this study so special?

Prospective, randomized controlled trial. Say what?! In terms of study designs, this type provides possible causal relationships. The researchers recruited a large, VERY defined population before the study began, and then they randomly assigned the participants to either the “avoid peanut” group or the “consume peanut” group. You can imagine it to be like putting 600 little pieces of paper with names into a hat, shaking all the pieces of paper, and then the first 300 chosen are assigned to the “avoid peanut group” and the remaining 300 individuals go to the “consume peanut” group.

Even though the study participants were highly defined upfront, it is possible that when you look across all participants included in the study, there may be other “factors” that could influence or “confound” the results. By doing this randomization process upfront, "treating" to an exact and defined protocol, and following those individuals over time, the hope is that these other potentially "confounding factors” will not be factors. Rather, a prospective, randomized trial aims to evenly distribute or shake out potentially confounding variables (i.e., sex, age, etc) between avoidance group and peanut consumption group so they are testing what they want to test – does introducing peanuts early or avoiding peanuts prevent peanut allergies from developing. Nothing more. Nothing less. This has NOTHING to do with reversing an already established food allergy. And the beauty of this study design is that they can ask all of their study participants for potential confounding information to later confirm that those potential “confounding” variables did in fact shake out evenly between the groups during the randomization process! How awesome is that?!

Many of the studies in the past rely on a different, less robust study design – observational and retrospective (looking back on what has already happened, i.e., peanut allergy vs. no peanut allergy correlated to when peanuts are typically introduced into the diet across a large population). This involves recruiting individuals who were “out in the wild” already consuming or avoiding peanut in who knows what kinds of quantities for one reason or another. While meaningful information may be gleaned, confounding variables are difficult to control. Observational and retrospective studies are a great starting point and often provide evidence to pursue those answers more definitively with a much better (much more expensive, I might add), prospective, randomized controlled trial. In fact, it was this same research group a few years back who did a study of this type showing that the prevalence of peanut allergy was much lower in Jewish children from Israel, where peanuts are introduced very early in infancy, compared to Jewish children in the United Kingdom, where peanut products, at the time, were not recommended for infants before a year old.²

What this does NOT mean

Because the study participants were a VERY defined population – they were between 4-11 months at the start of the study, and they were at risk of developing a peanut allergy (severe eczema, established egg allergy, or both severe egg allergy and eczema), we cannot safely extrapolate the findings beyond either the study population or the specific study parameters. The accompanying editorial published in the New England Journal of Medicine by Gruchalla and Sampson put it best:

"Given the results of this prospective, randomized
trial, which clearly indicates that the early
introduction of peanut dramatically decreases the
risk of development of peanut allergy (approximately
70 to 80%), should the guidelines be
changed? Should we recommend introducing
peanuts to all infants before they reach 11
months of age? Unfortunately, the answer is not
that simple, and many questions remain unanswered:
Do infants need to ingest 2 g of peanut
protein (approximately eight peanuts) three times
a week on a regular basis for 5 years, or will it
suffice to consume lesser amounts on a more
intermittent basis for a shorter period of time?
If regular peanut consumption is discontinued
for a prolonged period, will tolerance persist?
Can the findings of the LEAP study be applied to
other foods, such as milk, eggs, and tree nuts?"³

While many questions do remain, the same editorial goes on to say:

"…we believe that because the results of this trial are
so compelling, and the problem of the increasing
prevalence of peanut allergy so alarming, new
guidelines should be forthcoming very soon."³

They go on with suggestions for health care providers to follow for introduction of peanuts while we patiently wait for those new guidelines.

Where to go from here

In the words of pediatric allergist Dr. Dave Stukus, “This study may be called LEAP, but it’s still only one step.” This study provides a “benchmark” for many future studies. Being a basic scientist myself, I want nothing more than to take this information and understand how and why. What features of early immune system development impart tolerance when foods are introduced early? What changes happen to the immune system after you cross that critical period or window of opportunity? Along those same lines, how does prevention by early introduction differ from a child or adult who clearly tolerated a food for some time period, but went on to develop allergies much later on? We need to understand at a very fundamental level how we define immune tolerance at a cellular level, what establishes it, how it is maintained, and how it is lost.

Population studies such as the beautifully executed LEAP study give us guidance, but my hope is that by honing in on the how’s and why’s, we will move toward tailoring prevention and treatment strategies to the individual.

PS - Wish us luck as we trudge forward with introducing peanuts and tree nuts to Luke!

References

1. Du Toit G, Roberts G, Sayre PH, et al. Randomized Trial of Peanut Consumption in Infants at Risk for Peanut Allergy. N Engl J Med. 2015;372(9):150223141105002. doi:10.1056/NEJMoa1414850.

2. Du Toit G, Katz Y, Sasieni P, et al. Early consumption of peanuts in infancy is associated with a low prevalence of peanut allergy. J Allergy Clin Immunol. 2008;122(5):984-991. doi:10.1016/j.jaci.2008.08.039.

3. Gruchalla RS, Sampson HA. Preventing Peanut Allergy through Early Consumption - Ready for Prime Time? N Engl J Med. 2015;372(9):875-877. doi:10.1056/NEJMe1500186.

Headline hyperbole - probiotics cure peanut allergy?

Note about study discussed below – please do not try oral immunotherapy (OIT) or OIT with probiotic supplements on your own! This is an experimental food allergy treatment to be performed under strict medical supervision.

In the latest edition of medical headline hyperbole, many of us learned last week that “Fatal peanut allergies could be cured by probiotic bacteria, say Australian doctors” and “This Breakthrough Treatment Helped Over 80 Percent of Allergic Kids Tolerate Peanuts.”

Sigh… We all want a cure, and many scientists/clinicians are working tirelessly toward that goal (including the research group that performed the original peer-reviewed study(1)), but please, oh please media, stop overselling the scientific findings! I’m quite literally tired of having to explain the same thing over and over again! Unfortunately, there is a reason why one of my blog labels is now “Misleading Science Headlines.” I don’t necessarily want to go into the details of why this is so detrimental to both the science and food allergy communities, but rather I’d like to take the rest of this two part post to explain why the headlines got it wrong, what can actually be concluded from the study, and where the science may go from here. Lianne Mandelbaum, who founded No Nut Traveler, authored an excellent piece at the Huff Post Blog explaining why misleading headlines are such a problem when it comes to food allergies. I encourage you to take a read.

Brief summary of the study:

Mimi Tang, et al., from the Royal Children’s Hospital in Melbourne, Australia tested if the combination of oral immunotherapy (OIT) and a probiotic supplement could lead to “sustained unresponsiveness” in peanut allergic children compared to a placebo group  (peanut allergic children who did not receive peanut OIT or probiotic). They found that after stopping treatment (ranging from 2-5 weeks) over 80% of children who received OIT + probiotic maintained a “sustained unresponsiveness” to peanut compared to only 3.6% of the placebo group (1).

Study design: Randomized, double-blind, placebo-controlled