Gluten-Free Blogger Helps Organize Post-Sandy Relief

Two weeks have passed since Hurricane Sandy made landfall on the east coast, but many hit hard by the disaster have yet to recover.

While cities and independent organizations are prepared for natural disasters to a certain extent, resources are limited and rarely account for those struggling with special needs, like food allergies. That’s why Erin Smith, the creator of the blog Gluten-Free Fun, started using her social media presence to connect those in need of gluten-free with resources.

Smith lives in Queens, New York and spent a frightening night while Sandy roared outside her home. But she was spared the more devastating consequences of the hurricane and quickly turned her attention to others with celiac disease who were not so lucky.

She contacted food shelters and pantries in her area to see if they had any gluten-free options for those in need and posted the information on her blog, Gluten-Free Fun. She found that grassroots movements within individual communities, like donations at Three Dogs Bakery in Westchester and G-Free NYC, the first gluten-free store in New York City, were most effective in connecting those in need with necessary supplies. “These people are living the gluten-free lifestyle and know exactly what’s needed, and they’re bringing it to the people who need it,” Smith says.

While people have expressed great generosity in donating food and supplies to other relief centers, these items are not usually gluten-free. “People are going to these facilities but there’s nothing safe to eat,” Smith says. “People are making soups and sandwiches, but everything has gluten.” While some larger relief locations reported having limited quantities of gluten-free food, they said it was difficult to ration due to many volunteers not understanding celiac disease. “People don’t know what gluten-free means,” Smith says.

One organization that did achieve success catering to those with special dietary needs was Long Island Cares, a food bank in Freeport. When Smith contacted them, they responded very proactively to meeting gluten-free needs, vowing to keep gluten-free products separate from other food and making them available by request to those in need until there was enough of a supply to advertise openly without fear of running out.  Smith also helped coordinate donations from a number of major gluten-free companies, like Kinnikinnick, by letting them know which local food banks were accepting donations. Kinnikinnick sent 600 cases of gluten-free breads and buns to City Harvest of Long Island, N.Y., and the Chapin Food Bank in Hauppauge, N.Y.

While the emergency efforts of the food bank on Long Island are commendable, Smith says Sandy shows why a specific gluten-free food bank in the New York area is so necessary. “I would love if we had a gluten-free food bank,” she says. “A place you knew you could go to get food that’s safe to eat. It would be amazing.”

There are food banks in a few other cities around the country, like Loveland, Colo., Pittsburgh, Pa., and participating Pierce’s Pantry locations throughout Massachusetts. These food banks do the important job of helping those in the gluten-free community who are in need day-to-day, but they could also be invaluable when natural disaster strikes.

Beata Rybka

All I want for Christmas is a…

...Generator.  I whispered sweet nothings to my husband and told him he could shop for me at Home Depot this year.  Ho-Ho-Home Depot!!  If these storms…God forbid…are an annual event, then here is my wish list for Santa.

LED Candles-The holiday season is a great time to stock up on these.  LED pillars and votives are found at Costco and Bed Bath & Beyond this time of year.  They aren’t terribly bright, but they are safe.  I had LED votives on for seven straight days in my powder room.  (I could slide in a crass joke about darkness and missing the toilet, but I’ll let it go.)  I had votives on each stair going to the upstairs and on a little table in the landing at the top. 

Unscented Pillar Candles & Bags of Tea Lights-The candle wattage of a real candle is better than an LED candle, but scented candles are the absolute worst in a power outage.   Nothing will get your eyes burning or turn your stomach faster than Pumpkin Spice competing with Pear and Apple Cinnamon.  Don’t even get me started on the Christmas tree scented candles!  Scented candles are lovely in small doses, but if you are lighting candles night after night…it is disgusting.  My daughter walked in one night when we had grilled Salmon and had the Pumpkin Spice candle going and her quote, “Our house smells really odd…fish and pumpkin pie.”

One Full Deck of Cards-We have a drawer full of cards…some with 50 cards, or 51 cards.  The best CVS purchase I made was a full deck of cards on the day after the storm.  We had a wholesome game of Poker with our young sons, which was a lesson in math and gambling that was fun for one night and maybe half of the second.

A Fireplace or BBQ Lighter-If you are lighting the fireplace or twenty candles every night, there is no need to be all Little House on The Prairie with matches.

A Variety of Duct & Painters Tape-Our duct tape held together our neighbor’s generator and painter’s tape sealed the crack on the window after threading the plug from his generator into our house.

Heavy Duty Foil-I put peppers and onions drizzled with a little olive oil, salt and pepper into a heavy duty foil packet and threw it on top of the BBQ.  Next night I did the same thing with potatoes in one packet and green beans in another.   After a while, you just want a vegetable that isn’t from a take-out container.

The Flashlight App-It is REALLY dark trying to get into your house with no lights on anywhere.  The iPhone flashlight app is incredible.

Snack Packs of Pudding-Ok, this might need some explaining.  My husband and sons got stuck in the Florida hurricane that threatened in late August.  My husband bought pudding snack packs as part of his food hurricane provisions.   When I asked why, he said it was non-perishable and gluten-free.  He bought it again this time around and we all had a good laugh…until pudding actually became comfort food.  It’s velvety, unctuous texture and rich chocolate or vanilla flavor was quite simply, delicious, when sitting around in the dark after dinner.

Other non-perishables and a manual can opener-Trail Mix, Peanut Butter, Thai Kitchen Noodle Soup, Annie’s Gluten-Free Mac n’ Cheese, Chex Cereals, Schar Rolls, a variety of protein and nut bars.  The manual can opener is kind of obvious.

Red Wine-The Wall Street Journal used to have an “open that bottle” night which was a wonderful feature where people planned to open a special bottle of wine to share.  From talking to my friends and neighbors, every night after the storm was an “open that bottle” night.

While some of this is tongue in cheek, the one lesson I learned was that you must pay the kindness forward.  A long time gluten-free friend had us all over for dinner and to watch the Giant football game because they got power back first.  Then when I got power back, I opened up my home, my kitchen and my Wi-Fi key for my friends without power. 

Now that I have actually seen the footage of the devastation, it’s about paying it forward even further with cleaning supplies, donations and food for the people who lost everything.    We got the word yesterday that everyone in my community, except for approximately six homes with extensive damage, has power back up and running.  Thanks to the local crews and to the crews I saw from Montreal, Iowa, Texas and Louisiana who were working in our neighborhood.

Gratitude and paying it forward are actually the only two things I am going to think about this holiday season!  But if anyone else has a “must have” item for surviving a week or longer without power, feel free to add to the list.

Kendall Egan

This is My Brain on Sandy

Today I started my day at 8:45 am, not normal on a Friday.  There are no working clocks so I go to bed really early, but lie awake for several hours in the middle of the night worrying.  Stupid, right? But we have no working anything, I don’t know if smoke detectors are even working so I worry.

I threw on my jeans and went down the street to the deli with a generator and bought two large coffees with milk.  When I got home I strategized on where we would spend our day…two hours at the library, two hours at the Y, and a few hours at Panera.  I joked with the cashier on my third Panera meal on Wednesday that I was a “Panera barnacle.”

No school for the kids again, so I was offering up magazines, the movies, books and whatever to keep them busy.  All they really want to do is go back to school.

I fired up the gas burners and fried up some toast in a little butter.  Everyone is eating the gluten-free bread because I had four loaves in the freezer.  I threw away a ton of other really good frozen gluten-free food, along with everything else, that I couldn’t cook!

Ninety percent of the homes in my town are without power, but miraculously most of the center of town is intact.  We just rotate locations to warm up and charge iStuff like everyone else.

I am so grateful that my flight got in on Sunday.  My plane was the last Jet Blue flight to leave the west coast for the east coast.  We received the scary warning about getting trapped in JFK for days or not landing in New York if the storm changed, but we made it.  I got my car from the parking lot and headed home on eerily empty roads around midnight.  Highways in New York are never that empty.

I am so grateful that a gas station on the Hutchinson River Parkway was still open so I could get my gas tank totally filled.  It was desolate and creepy, and I paid a King’s Ransom price for the gas but I am so glad my tank is full today with two hour waits for gas.

There are no stop lights and it just makes me crazy when people don’t follow the rules of stop signs.  Do you really need to sneak through instead of just waiting your turn?  My kids have heard ever cuss word in the book.

At Chipotle last night I got all choked up seeing the out of state power crews roll in to town in a convoy.  We are all fraying around the edges and we are the lucky ones…the storm surge ruined businesses, not homes in my neck of the woods.

I keep telling people who email me with their concerns from the devastation they have seen on the news that I have not seen the devastation in other parts of the east coast because I have no power and no internet.  And, when I hopped on a treadmill at the YMCA, JUST to watch the news, the TV froze.

I do feel lucky.  It’s not terribly cold yet.  Now I have an estimate for power, November 9^th, and even though it is seven more days, it is a date.  I have been given assurances that schools are a top priority for power in order to get the kids back to a sense of normalcy.  I have a husband who brilliantly prepared for the storm while I was visiting my family in California and who leaves the house every day with a cooler for provisions and ice.   I have hot water and I just found a laundromat that is operational.

Of course, when I packed up the kids for our day of roaming…I left my big beautiful cups of coffee at home.  My brain on Sandy.  Be safe and be well to everyone in this region.  We will all get through this.

Kendall Egan

Just because it’s gluten-free…

I was on an airplane last Friday and ordered a cup of tea when the stewardess came down the aisle.  I like tea in the afternoon and I like it with milk.

She handed me the cup of tea and two little plastic packages of non-dairy creamer.  Due to sixteen years of living with celiac disease, out of sheer habit I read the label.   It seemed gluten-free and it also seemed like a whole lot of “yuck.”  The “contains” label said that soy and milk ingredients were present and my inner voice asked, “Where?”

Here is what was in my little plastic container of non-dairy creamer.  My apologies for any misspellings, mouse print labels are very tough to read even with glasses.

Water

Partially hydrogenated soybean oil

Corn syrup solids
Sodium caseinate
Dipotassium Phosphate
Sugar
Mono and diglycerides
Sodium Stearoyl
Lactiylate
Soy Lecithin
Artificial colors
Artificial flavors

All I really wanted was a splash of milk to cool off my tea and lighten it a little bit.  I asked her if I could have milk and she didn’t have any on her cart.  So the choice was to dump the two plastic packets of chemicals into my tea for a milk-like flavor or drink it black.

The non-dairy creamer was safe to consume from a gluten perspective, but totally gross from every other perspective.  I drank half the cup black and switched back to my water bottle.  The moral of the story for me is that sometimes reading labels can turn you off a product completely even if it is gluten-free!

Kendall Egan

A yogurt that contains wheat

Typically, yogurt that doesn't contain granola, pieces of cookies or cereal is gluten free.

So you can imagine my surprise when I read the ingredients of Quaker's new Muller yogurt and discovered most varieties and flavors contain wheat. It's clearly labeled at the end of the ingredients list in a "Contains" statement. So while this is surprising, it's surely not hidden.

The company says modified food starch is the source of wheat in all flavors of Corner and Fruit Up products. Also, all flavors of Greek Corner Yogurt contain modified wheat starch except Honeyed Apricot, which has modified food starch made from corn. A few products with granola or cereal also contain wheat flour, which is listed on the label.

The Muller brand originated in Europe where wheat starch and modified wheat starch are used much more commonly than in the US. The products introduced to the US market by Quaker continue to be made in Germany, although a US plant is under construction. It's not yet clear whether there will be a change in formulation once the US plant opens.

Wheat starch has been allowed in gluten-free foods in Europe for a number of years. Muller notes that many of its yogurt products contain no more than 20 parts per million of gluten in accordance with European Commission  regulations for products labeled gluten free. 

The Food and Drug Administration has proposed a similar standard for products labeled gluten free in the US, but the standard still doesn't have final approval. Meanwhile products that contain wheat starch cannot be labeled gluten free.

The proposed rules would allow foods with an ingredient made from a gluten-containing grain that has been processed to remove the protein harmful to those who have celiac disease to be labeled gluten free. However, it's not completely clear whether wheat starch or modified wheat starch would fall into that category.

The FDA has said it will finalize a gluten-free definition "as soon as possible," but it's unlikely to happen before the end of the year.

US allergen labeling laws passed in 2004 do require that any wheat used in a product has to be noted on the label. It can either appear as part of the ingredient listing, for example modified wheat starch, or at the end of the ingredients list in a "Contains" statement as in the Muller yogurt.

Since modified wheat starch is currently not considered gluten free in the US, those who follow the gluten-free diet are advised not to eat products that contain it. That means most of the Muller products in your supermarket are off limits.

And it's another reminder that no matter how familiar you are with the ins and outs of the gluten-free diet, you always have to read labels.

Amy Ratner

Gluten-Free University Family Weekend

Across the country parents of college freshman are heading to campuses for Family Weekend. It's often the first chance they have to lay eyes on their newly independent children and make sure everything seems to be OK.

My youngest son is a freshman and so our family traveled to his university this past weekend for a tailgate, barbecue and football game. (The home team happily won). My daughter, who has celiac disease, went with us to see her younger brother. So I was glad to see that the university had posted information on foods at the barbecue that were gluten free. Even better, it turns out almost everything on the menu was.

It included hot dogs, sausages, pulled pork BBQ, BBQ chicken, baked beans, potato salad, coleslaw, and fresh fruit. Only  the veggie burgers, cupcakes and buns weren't gluten free. We did not request gluten-free items and the university's decision to make the menu so gluten friendly was prompted internally. Many foods were also dairy and nut free and several were vegetarian or vegan. 

Ironically, this same university had only 11 gluten-free items on its entire dining hall menu when my daughter looked into attending about five years ago. That's not the reason she chose another school, but it was in the negative column. It was just another reminder of how much has changed so quickly.

And at the barbecue, it turns out there was even a dessert that was gluten free. My daughter was able to enjoy Rita's Italian Ice, which had set up a free stand nearby.

All in all, a very inclusive event.

And my son does seem to be doing fine as a new college student.

Amy Ratner

Latest on Gluten-Free Labeling Law

The end of the third quarter has rolled around and, as pretty much everyone expected, the Food and Drug Administration still has not finalized rules for gluten-free labeling.

The agency, under pressure from the gluten-free community, had said final approval would likely come by September 30. That deadline became a little less likely months ago when a presidential budget proposal seemed to move action to the end of the year.

Today, an FDA representative told me the agency is working to publish a final rule as soon as possible.

The FDA received about 2,000 new comments last year when it once again asked consumers, food makers, support groups and medical and gluten-free testing experts to weigh in on proposed rules that were supposed to be passed by 2008.

Comments now being considered by the FDA touch on many issues, including important questions about how to detect gluten in food. The FDA says the gluten-free definition remains "a high priority."

But the gluten-free community is trying to take its case for precise gluten-free labeling to another level by attracting attention from the White House. It's looking for grassroots support through a petition you can sign on the White House website, We the People. The petition calls on the Obama administration to finalize standards for gluten-free labeling so that those who have celiac disease and gluten sensitivity can make safe food choices.

"If a petition on the website gets enough support, White House staff will review it, ensure it’s sent to the appropriate policy experts, and issue an official response," the website says. A petition has to get 25,000 signatures within 30 days to trigger review. You can read more about the gluten-free labeling petition on the American Celiac Disease Alliance website.


A strong push for FDA action came last year when 1in133, a grassroots group, drew attention to the long ignored gluten-free labeling proposal by building the world's tallest gluten-free cake at an event in Washington, D.C. Mike Taylor, FDA deputy commissioner, promised to "get it done."

The FDA then reopened public comment, saying it was looking for information on any new developments in research or testing that might impact a final gluten-free labeling law. 

Currently there is no precise definition for the gluten-free label aside from a general requirement that food labels have to be truthful. Wheat, barley and rye cannot be used as an ingredients in foods labeled gluten-free. The Food Allergen Labeling and Consumer Protection Act directed the FDA to come up with better definition. In 2007, the agency proposed less than 20 parts per million of gluten from any source, including cross-contamination, as a standard for foods labeled gluten free. But progress then stalled until it was kick-started by 1in133.

It's still hard to say for certain when labeling rules will finally be passed. But it's pretty clear it's important to make your voice heard and the petition is one way to do that.

Amy Ratner