It Has What?!? Milk Protein in Asthma and Allergy Medications

I learned something new this month and it scared me.

I have always heard reminders about the importance of checking labels for not just food but everything: soaps, bird feed, fertilizer, chalk, drugs.  And I thought I had always been good about reading through labels.  However, while checking my Facebook feed, I scanned over a status update from Allergic Living that highlighted its feature on milk protein in asthma medication.  I stopped.  I reread the sentence.  Uh oh.  I've never questioned whether my own asthma management medication could be a source of danger for my kids!!

In our emergency med pack, I was toting Auvi-Q epinephrine injectors for my kids and an inhaler
for me.  Little did I know my inhaler contained milk protein that could put my kids' lives at risk.

After reading through the whole article and scouring through more information online, I discovered that Advair and Ventolin do in fact contain milk protein in the form of lactose dry milk powder.  In addition to these two products, milk derivatives are also present in popular allergy and asthma relief drugs such as Singulair, Flovent, Claritin tablets, and Prednisone -- yes, Prednisone, the drug that is often given to prevent a biphasic reaction after anaphylaxis.  Seriously, how did I not know this??  How did I miss this all these years?

Here's how:  While 2004's Food Allergen Labeling and Consumer Protection Act (FALCPA) made it mandatory for all food products to be properly labeled to identify the presence of the top 8 food allergens, the same rules do not pertain to non-food products.  Prescription drugs, over-the-counter drugs, health and beauty products, and pet supplies (including pet food) are just several of "non-food products" that fall outside of the FDA's regulatory net.  (For a more in-depth look at what the act affects, check out Kid with Food Allergies summary on FALCPA.)

So drug manufacturers are not required to label food allergens on their packaging.  The FDA does require medications to be accompanied by patient package inserts.  These inserts are written in microscopic font on a one-page, single-spaced, double-sided document that is notoriously lengthy and technical.  This information is nearly impossible to get through without a medical degree and magnifying glass, even if you are looking for your kids' allergen buzz words with eagle eyes.  What's more, patient package inserts do not have to list ingredients or food allergens.  The inserts include sections on how the drug works, indications, contraindications, warnings and side effects, and dosage recommendations, and it is the drug manufacturer's discretion to list food allergens. 

I checked the package labels of my asthma management meds which I last filled in spring, the time of the year when I endure a full-on attack by grass and tree pollens.  No mention of milk ingredients.  There was a mention of a mysterious white aerosol and instructions to rinse my mouth thoroughly after each use...These warnings should have been red flags to me to dig deeper over the ingredients.

How to find out if your asthma medication contains milk:

1. Check out this list of asthma medications that contain lactose (milk) compiled by the Allergy Asthma Information Association (AAIA).  Please keep in mind that this list is from 2006 -- most certainly there is updated information out there.  
2. Remind your physician or child's pediatrician about their food allergies when they are about to be prescribed medication.  Contact your allergist about medications you or your kids are prescribed.  Are they free of your (children's) allergens?
3. Do your homework online.  Search your medication by name to see if it is milk-free.
4. Please, please have your kids wear some sort of allergy alert identification (medical bracelets, wristbands, dog tags).  If an emergency occurs and you or they cannot advocate for themselves, these medical alerts could prevent them from receiving treatment that will make an asthma attack or anaphylactic reaction even worse.

Do you manage asthma and a milk allergy?  When did you find out that asthma treatment medications contain milk products?

It Has What?!? Concerns about herbal supplements and the big picture of food safety underregulation

A recent study on herbal supplements serves as another cautionary tale about
dietary supplements, an underfunded FDA, and a marketplace out of control.

Very troubling news about companies that are not selling what consumers think they are buying.

Last week my local public radio station aired an hour-long segment on herbal supplements.  Herbal supplements are big business in the US with approximately 29,000 products on the market and Americans spending an estimated $5 billion annually on them.  Scientists at the University of Guelph, Ontario, recently published results of a study of 44 herbal products that used a technique, DNA barcoding, to verify the products' ingredients.  A staggering majority of herbal supplements were found to be diluted or replaced with fillers.  Here are the quick findings:

• Of the 44 herbal products tested (all 44 sold by 12 companies), nearly 60 percent of the products contained plant-based ingredients not listed on the labels.
• In nearly one-third of the products, the marketed herb was completely replaced with another plant substitute.  (No trace of the advertised herb was found.)
• Over one-fifth of the 44 products tested contained fillers that WERE NOT LISTED on the ingredient labels.  These fillers were derived from wheat, soy, or rice.

Altering ingredients is potentially harmful to those who use supplements as part of their daily health regimens or management plans for their ailments.  And it is downright deadly for those with food allergies.  How is it possible that herbal supplements can get away with this?

First of all, herbal supplements (like vitamins and other dietary supplements) are categorized as food not drugs in accordance with the Dietary Supplement Health and Education Act of 1994.  Because they are not considered drugs, supplements are not subject to the same rigorous FDA safety and effectiveness testing done for new drugs.

Supplements are categorized as food so they must follow certain standards.  Under the Food Allergen Labeling and Consumer Protection Act of 2004, all food products regulated by the FDA must meet specific guidelines for listing the most common 8 food allergens (milk, egg, soy, wheat, fish, shellfish, peanuts, tree nuts) on ingredient labels.   Herbal supplements fall under the food product category so -- in theory -- they must follow the FALCPA mandate and be forthcoming with listing the most common food allergens on their labels.

The 2008 Current Good Manufacturing Practices (cGMPs) established new regulations that require dietary supplement manufacturers to undertake numerous tests during the production process.  Many manufacturers makers source the ingredients for their product from third-party suppliers  including suppliers from foreign countries.  The cGMPs hold companies responsible for testing all incoming components for their products to make sure that the components match exactly what they had ordered.  Only after verifying the accuracy of the ingredients should supplement manufacturers use the ingredients to create their supplements.  Finished batches of supplements must also be tested.

The enactment of food allergy labeling (FALCPA) and guidelines for testing (cGMPs) should ensure that the supplements are what they say on the labels, right?

It should.  But officials with the FDA itself assert that a great portion of the dietary supplement industry continues to be non-compliant with the cGMP mandate.  And the severely underfunded and overextended FDA admits it does not have the means to check all products coming into the marketplace.  (DNA barcoding and Enzyme-Linked Immunosorbent Assay (ELISA) for food allergens are expensive.)  The FDA are largely reliant on the diligence of consumers to report suspected bad products and the good faith of companies to offer honest, safeguarded products.

A doctor/presenter that I heard speak at the recent Food Allergy Bloggers Conference confirmed that most errors in labeling/ingredients are caught by the manufacturers themselves through their own independent testing.  Recalls are voluntarily initiated by these food manufacturers.  She reasoned that companies are forthcoming because it is in their best interests to resolve accidental mislabeling of food allergens -- they do not want to damage their good reputation among their customer base.  I admit, this revelation does not sit comfortably with me at all.

The University of Guelph's study shows us that we should not have faith in herbal supplements:  herbal companies are slipping through the cracks with watered-down products whose labels are incomplete, inaccurate, and just plain dishonest.  The study reminded me of the tainted infant formula scandal in China from several years back.  Dishonest producers and non-existent food safety regulations led to the illness of 300,000 people, over 50,000 of them being infants.

Over many years of being a food allergy mom, I feel like I'm pretty good about checking ingredient labels for food allergens.  But there's absolutely no way I could protect my kids from food allergens that are in supplements that blatantly omit ingredients from their label in order to hide their shady practices.  We as a nation must demand stricter guidelines on food labeling and regulations.  We need to hold companies accountable for testing their ingredients.  I would love to know where ingredients are sourced (U.S. grown or are they imported?  From where?) and how they are grown (GMOs vs. non-GMOs).

I was never much of a supplements kind of gal.  And with this latest disturbing report, I don't think I will be anytime soon.  The more I read and listen, the more I worry about the safety of any manufactured food product.  We shouldn't have to wait until someone ends up sick or dying to know the truth about what we are putting into our bodies.

If you don't have time to listen to the audio segment of the talk, the New York Times published a nice summary of the University of Guelph's study and implications here.  

Recap: 2013 Food Allergy Bloggers Conference

Last weekend Sarah and I attended the first ever Food Allergy Bloggers Conference, an event that drew scores of food allergy parents, parent-bloggers, and parents-turned-bloggers-turned-enterpreneurs together in Las Vegas.

After a stressful week at home, we relaxed on the Vegas Strip
to ready ourselves for an event-filled FABlogCon. 

Over the course of two days, prominent allergists, physicians, and researchers expanded our knowledge  on anaphylaxis and its incidence rates, the importance of epinephrine, current clinical research on possible treatments, and the varying impact of food allergies across different age groups.  There were also practical sessions with authors, tech gurus, and successful proponents of food allergy legislation who offered advice on how to take the next steps in our advocacy work, personal blogs, and related pursuits to craft and market our hard work into something more accessible and possibly profitable.

Pediatric allergist and co-founder of AllergyHome, Michael Pistiner,
talked about the social and emotional impact of food allergies and their
effects on the ways adolescents and young adults manage them.
Sobering and alarming research on risk-taking!

The conference was as rich with information as it was with passionate and creative attendees.  There were parents, grandparents, siblings, and individuals living with food allergies themselves.  If you have checked out a food allergy blog or bought a product or cookbook that catered towards your restricted diet, chances are the individual behind that precious resource was there at the conference!  I couldn't help feeling a little intimidated upon first meeting Lynda Mitchell, founder of Kids with Food Allergies; Eric Edwards, co-inventor of Auvi-Q epinephrine auto-injector;  and Heather Mehra, co-creator of the No Biggie Bunch children's books.  Of course, after we started chatting my nerves eased up.  They, as well as all the attendees I met, are just regular people whose work is motivated by wanting to support all who are also living with food allergies.

We were beyond excited to talk with Auvi-Q co-inventor,
Eric Edwards.  Eric's passion was evident as he told us about
the research and development process.  He wanted to know all
about Sarah's son's experience with self-administering Auvi-Q.

Our newest food allergy friend, Devin, is the author of Nom Yum Free.
Check out her blog's gorgeous photos of her vegan, nut-free, raw recipes.

Allermates was one of many generous sponsors.  They provided all attendees
with free allergy alert wristbands and labels and an insulated medicine bag.

Some of the free products and books from FABlogCon sponsors.  I had to eat
my Sun Cups and Skeeter Snacks because they simply would not fit into the photo.

So many bloggers and food allergy advocates, and so little time!  I wish I could have met Drs. Michael Pistiner and John Lee, allergists and co-founders of AllergyHome.  AllergyHome is one of my favorite resources for educating caregivers, school communities, and others whose awareness is critical in keeping our food-allergic kids safe.  Its Facebook page sends out clever food allergy PSAs, too.  Maybe next year!

Special thanks to master organizers, Jenny Dare Mitchell Sprague of Multiple Food Allergy Help and HMO Woodrum of Oh Mah Deehness, and the many volunteers who made this conference happen.  The meals were delicious and allergy-friendly (thanks to the allergy-aware Chef Keith Norman),  accommodations were great, the variety and scale of sponsor freebies were mind-blowing (our suitcases overfloweth!), and everything ran smoothly.

It's been a growing struggle for Sarah and I to juggle our personal/family/work needs and commitments with blogging.  As our kids are getting older, we have gotten busier and busier and something has had to give -- and it won't be the care of our kids.  Sarah and I left the conference feeling reassured and inspired by all the spirited blogging and food allergy advocacy work going on in communities all across the country.  No matter how small or how often we blog, we are all helping food allergy families everyday by adding our voices and sharing together in this journey.

We are already looking forward to the next Food Allergy Bloggers Conference!