Tag Archives: food allergies

FDA Lawsuit and the Need for Clear Labeling

The Wall Street Journal had a piece in their March 17 Pharmalot edition discussing the recent lawsuit brought against the FDA for not regulating the disclosure of gluten in medications.

The article delves into the struggle Michael Weber, the plaintiff in the lawsuit, endured to find safe medication.

After taking the drug, “I called my pharmacy and they were not able to determine that drug was gluten-free,” says Weber, a medical office assistant in Eastchester, N.Y. “So then I had to find which manufacturer produced the generic. I went to their website and then had to speak to somebody at the company. They said that was not a gluten-free batch… So I had to discontinue taking the drug. I would like to be able to take drugs and not have any fears or go through all these hoops.”

It is ironic that the FOOD and Drug and Administration would have a lawsuit brought against them for failure to keep citizens with a debilitating medical condition safe.

Unfortunately, this is a battle the celiac and food allergy communities have been fighting for years. It would be nice to have all drug manufactures list all of their ingredients. It is a challenge navigating having a simple antibiotic filled or working with your doctor and pharmacist to find the appropriate medication to take for chronic conditions.

IcebergThe reality is this only the tip of the iceberg. Food products can be found in hair care products, soaps, lotions, make-up, household cleaning products, over-the-counter medications, prescription medications, and the list goes on.

Although food is inherently not a bad thing, in fact it is good and necessary for life, for some people, being exposed to trace amounts of certain food proteins can  cause serious reactions.

We in the food allergy and celiac communities need to push for clear labeling laws, on food, pharmaceutical, personal care, and home care products. If it contains food, or a food derived product, it needs to be on the label in clear plain English.

Transparency in labeling needs to go beyond gluten and the FDA’s recognized top eight food allergies. Transparency may only truly be accomplished if ALL foods are clearly labeled on ALL products that contain ANY food or food derived substance.

According to FARE, Food Allergy Research and Education, “More than 170 foods are known to cause food allergies”.

As a society, as consumers, we need to care about being able to actually read and understand the label on the products we use and consume. It benefits everyone, not just the celiac and not just the food allergy communities.

LIFE OF A FOOD ALLERGIC, A BREAK FROM THE NORM

In the world of special dietary requirements there is much talk of how clean is clean. Delving into the minutia, constantly, makes one feel a bit cross-eyed not to mention the endless label reading, grilling manufacturers about their facilities, how their lines are maintained and cleaned between each product run wears very quickly.

There are also our interpersonal relationship discussions. What soaps do they use? Did they hand wash or use the dishwasher? Is this a home I feel safe in or wary? Please don’t put your lips close to my face if you’ve eaten something I’m allergic to.

And then there are the blessed weekends when we find a place where we feel like we belong. This last weekend was spent at special dietary needs conferences like Living Without’s Gluten-Free Food Allergy Fest in Austin, TX.

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What a joy this conference was. It was a bit of a break from treading through the weeds to have the opportunity to pop up and say “hello”.

Hearing people’s stories, was so refreshing, so varied! Some shared stories of with long battles to get their diagnosis, some with being diagnosed years before there was much information or help, and others, just recently diagnosed desperately looking for help with their new normal.

There were some really fantastic vendors, as well. Not only were their products amazing, but they were extremely open about their manufacturing process – which was so refreshing. I love the small companies who are driven by all the right things: openness, quality, and genuine care for their customers. Amazing stuff.

But most of all, I loved seeing the support. How sweet it was to my heart to see someone walk in with their friend or relative tagging along for support! Yes, please! Life has its ups and downs. Not everything is going to go my way or be perfectly suited to me, but if I have the support and care of a friend, it makes all the difference.

Much of what I saw this weekend was a direct result of that very thing. People lost in the minutia, reading labels, going cross-eyed…one day deciding to take a leap and do it for others. The micro and macro are tied and intertwined together, each individual thread embodying its color coming together in a tangled mess to create a beautiful masterpiece.

As featured on Food Allergy Gal.

Product reviews from the Gluten Free Food Allergy Fest coming in next several weeks! Stay tuned.

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Excited about… Food Allergies

This past week I’ve been working on a “You CAN eat list” and menu for a client. It is such a thrilling and rewarding experience. We all know the feeling of leaving the allergist office with a list of things we can no longer have, and suddenly that list seems to be everything edible on the entire planet. It’s overwhelming, frustrating, terrifying, and confusing.

Thankfully, a “You CAN eat list” puts that other list into perspective.

This is part of the reason I’m looking forward to the Gluten-Free Food Allergy Fest at the end of this month.

They are the “You CAN” conference for those with food allergies and intolerances.

So tired of “nos” and so looking forward to the positive!

Hope to see you there! I’ll be in booth 102 – 104, stop by and say, “Howdy!”

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Mark your calendar!

This February 28 through March 1 join me at  the Gluten Free Food Allergy Fest.

I am looking forward to this gathering for several reasons. Connecting with others living with food allergies and intolerances, meeting some of my virtual friends in the fa community in-person (finally!), learning new information, seeing new products, all the typical things.

We’re having a party and you’re invited!

“We’re having a party and you’re invited!” Is this not the best invite to a food allergy/intolerance conference, ever?!  My goodness. we live in the trenches daily and this conference awaits on the horizon like a city on a hill. A great place to talk about victories with our dietary restrictions. Don’t get me wrong, connecting with others and sharing struggles is important, but sometimes, we need to be able to let loose…even if for just a bit.

I hope to see you there. I’ll keep you posted and as the date gets closer I will update you with details about my location at the conference.

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Word Counter

I’m amazed, when I look back over the past several years, how my vocabulary and knowledge regarding food allergies have grown.

My past struggle to explain food allergies (who, why, when, where, how), has been replaced with gauging how much is too much.  A good indication is “The Look”, glazed over eyes and periodic sighing, the tale-tale signs you’ve lost them in an information over-load. I’m glad for the growth but sometimes all that knowledge can make things difficult.

A question came up recently in a food allergy group that touches on this issue.

“What should I put on a medical alert bracelet?”

Good question. Space is limited and you need to communicate the most important things for first responders. This is not the place for a detailed medical history or the nuances of your diagnosis.

The situation is critical and you need the first responders to know… what? I would suggest these guidelines:

  • What would make things worse? Do you have drug allergies, do you take a critical daily medication, do you have an implanted medical device, etc?
  • What are your conditions? Do you have food allergies, a major organ condition, etc?

Use these questions to make your list. Brevity is the goal here. So make your list as long and detailed as you like then start widdeling it down. Try to get one or two words for each item.

Allergic to five different foods, no need to list all five, instead list “Multiple Food Allergies”. This let’s them know you have food allergies and to use caution and gives them a clue as to what is going on if you are non-responsive. The point is to give the first responders information that will help them treat you without making you worse. Remember, their goal to stabilize you and get you to the hospital. At the hospital, their goal is to get you out of danger and well.

When brevetity matters, what would your bracelet say?

Thanksgiving

This weekend I spent a few hours combing through hundreds of recipes from my late grandmother. She was an excellent cook. Sifting through her recipes brought back memories of being in her kitchen and watching her cook. She taught me how to fold ingredients together to make a light fluffy cake, how to make a sauce, and pan gravy. She taught me so much, things I still benefit from.

My grandmother was such a wonderful, loving person, her cooking was just the icing on the cake. Every time I make one of her recipes, I know I am in some small way carrying on her memory. So, in preparation for Thanksgiving, I made her pumpkin pie. It calls for real-whole pumpkins – she was that kind of cook.

I was reading her recipe and reminded again of my grandmother’s gentle humble nature. The recipe is literally a list of ingredients with measurements. No directions, no how-to, just a list. In her humility she genuinely believed her cooking was so ordinary that anyone could do it. There was no need for step-by-step directions…why everyone knows how to make a pie and pie crust from scratch. She was so unassuming, she just thought if someone wanted her recipe, they just wanted to know what she used.

It is such a contrast to today’s society when everything is pre-made, boxed, and effort free. It is a hard transition to come from a place of buying pre-made items and adding water or just heat and serve to actually having to cook…with the ingredients in their natural state.

Although that transition can be difficult – it is possible, and I must admit the training I received in my early years has served me well. A good recipe, a few modifications to adjust for allergies or intolerances, opens up a world of freedom. Once a skill is learned it can be applied over and over again.

The really neat thing, the thing that humbles me the most, the little treasures my grandmother invested in me, I am now investing in the younger generation. I now have a little helper in the kitchen who I am showing how to make a pie crust and make pumpkin puree from scratch. In addition to the lessons I learned and am now passing on, I am also teaching about food allergies. Lessons in action about cross-contact, substitutions, etc, are now a part of what I am passing down.

This year, this season, I am thankful for those who invested in me. It takes time and effort to pour yourself into someone else simply for their benefit. I am blessed to have had many people in my life who loved me sacrificially and poured themselves into my life. Those moments have made it possible for me to flourish despite and through my food allergies.

FARE’s new president

As you may or may not know, FARE has elected a new president. Dr Baker has served as interim president since the previous president resigned in August. I invite you to read Dr Baker’s interview on the FARE blog.

FARE’s Blog – Dr Baker Interview