Foundation helps poor Celiacs

Great article about a group aiding people with Celiac Disease in the Palm Beach Post.

When a $12 baguette tempted Phyllis Kessler in a grocery store aisle, she did not scoff at the price, but instead savored the anticipation of a piece of garlic toast.

Yes, I too have licked my lips over that $12 baguette. But those gluten-free versions of food are expensive.

Four months later, Kessler and her Delray Beach-based celiac support group have raised more than $9,000 to help those too poor to buy substitutes.

She and the folks at the Celiac Disease Foundation of South Florida call it their Gluten Free Food Assistance Program. They believe it's the only one like it in the country.

Now, who's going to help me get more bars to carry Redbridge?

On Living Without

Today's Sun-Sentinel carries a story dear to my heart - and my health:

Gluten-free beer taps new market

I was born with Celiac disease, and was diagnosed before I was a year old; but back in the day, doctors believed it was an infantile illness that one outgrew.

Celiac Disease is actually a congenital condition; and it has several effects;

• Celiacs do not produce an enzyme needed to break down the glutens in wheat, barley or rye.
• Our immune system reacts to the presence of gluten by attacking the walls of our intestines.
• That immune response also may result in muscle cramps, joint pain, skin conditions, mood swings and a long list of other symptoms. Including, yes, diarrhea.
  

In 2002, I was diagnosed with it again. Doctors now believe that as many as one in every one hundred and fifty Americans suffer the disease. The only treatment for celiac disease is to go on a diet that is free of gluten; no wheat, barley, or rye. And nothing made with products derived from them.

But it also means no foods that have come in contact with gluten: I can't eat eggs that are fried on the same griddle as pancakes, or eat french-fries that were cooked in oil with batter-dipped onion rings. If you've put bread stuffing into the turkey, it's the same as eating the bread directly.

It's been inconvenient not to be able to swing through a drive-through for a burger, but no big deal. I sometimes miss delivery pizza; I can get frozen rice-flour crusts, but it's not the same. And though Pizza Fusion now delivers where I live, it's twice as much and the crust just isn't the same. But I don't miss the reaction to the flour. And with rice pastas, I can get my tomato-and-garlic fix quite readily.

But living without beer was dire.

Nothing hits the spot after a long, hard day, like a cold crisp, beer.

I tried to find substitutes; wine is fine, but it just doesn't hit the right flavor keys. Hard Cider is like soda, far too sweet. Liquor just got me too dang drunk. I experimented with wine spritzers, various cocktail combinations, but nothing comes close to the comfortable tang of a good brew.

I learned through research that several microbreweries made gluten free beers. None were as close as a thousand miles. I'd comb the shelves of those shops that boasted huge beer selections; no dice.

Then, Whole Foods started carrying a beer from Wisconsin: New Grist, produced by the Lakefront Brewery. It wasn't the best beer I'd ever tasted, but it was BEER! So, beer was back in my life.

Sometimes.

Only one distributor carried it, and South Florida is the extreme far end of its range. Deliveries weren't frequent. And sometimes they didn't recieve any in from Lakefront.

Then Annheuser-Busch stepped up to the plate. They created Redbridge, a sorghum based brew that is not only gluten-free, but really, really good. It brings to mind Sierra Pale Ale, which had always been a favorite.

I can get Redbridge at Public's. I even got one bar to carry it for me. Heaven!

I've moved, so I don't get back to my old hangout. But if you carry Redbridge, I will come drink at your establishment (hint hint). I'll bring thirsty friends. (hint hint).

But the Sun-Sentinel article does make misleading statement:

Gluten-free beers are made without the wheat or barley used in traditional brews. Most U.S. breweries make gluten-free varieties with sorghum. Other brews, like Japan's Sapporo, use rice as the chief grain.

While it does use rice as a primary grain, Sapporo is not a gluten-free beer. From their website:

Q. I have heard that Sapporo is gluten free. Is it true?

A.
No, our brewing process is traditional and uses malt. All beer brewed from malt contains amino acids, peptides and proteins. Therefore Sapporo is not 100% gluten free.

New to Celiac Disease? Here are some links I've found useful:
Gluten Free Living
Celiac Chicks
Celiac Handbook
Gluten-Free Blog

My Mommy Loves Me.

She made me gluten-free banana muffins.  This was AFTER the batch of gluten-free tollhouse cookies that I'm still working on.

I fly home on Sunday; I might escape punching a new hole in my belt.

Wellshire Farms is trying to kill me.

No, this is not a paranoid rant; some of the largest merchants of ready-to-eat foods are selling food that is deadly to millions of Americans.

The Sun-Sentinel is carrying a Chicago Tribune story that reports some major American food vendors are selling products that are supposed to be free of allergens, but aren't. The consequences of that can be - and have been - fatal.

One of the companies out to kill people recklessly lax in their labeling is Wellshire Farms. There are actually lot more in the Tribune story, but I've actually bought Wellshire Farms products, and failed to connect my resultant reaction eating their product because, after all, it was clearly labeled "gluten-free."

Pridemore recalled how she bought Wellshire Kids' dinosaur-shaped chicken nuggets, made by New Jersey-based Wellshire Farms, because the item specifically claimed to be gluten free. She also found the same claim on the Wellshire Farms Web site.


After her son had the severe reaction to the nuggets, she took some to his allergist, who ran tests, including gently rubbing a nugget on the boy's arm to see if it would cause a small welt. It did, and the allergist concluded the nuggets were to blame for his full-blown reaction.

...she sent the remainder of the nuggets in her freezer to the Nebraska lab.

The results showed high amounts of gluten.

Like any of us, she contacted the USDA. But it turns out that they're out to kill indifferent to the plight of those of us with allergies, too,.

she e-mailed a copy of the findings to the USDA and reminded Maxwell that the product advertises itself as gluten free.


The investigator wrote back that the government had "archived your complaint." The investigation went no further, according to Pridemore. She also e-mailed the test results to Wellshire Farms. The company, she said, never responded.

You might be wondering why Pridemore had the product tested herself: well, she was told to:

In an e-mail in January, (agency investigator Michael) Maxwell indicated to Pridemore that in light of that inspection report and the fact that no other consumer had complained, no action would be taken. "You may want to have the product tested," he wrote, according to a copy of the e-mail exchange.

And did the USDA then contact the company to have them explain the test results?

USDA spokeswoman Amanda Eamich said one reason it did not ask Wellshire Farms to recall the chicken bites is because the agency did not trust the consumers' testing results.

So, the USDA instructs the victims to seek their own test results, and then ignores them out of hand. That sounds like complicit negligence, to me.

To be fair, it's possible that Pridemore's sample was contaminated after it was open in her kitchen. I know that it couldn't happen in MY kitchen, because, as a celiac, I don't keep any gluten-bearing items in the house. That would be pretty stupid, wouldn't it? I mean, the stuff's like arsenic to me, why would I keep it around? But that's me, and I don't know about Pridemore's kitchen.

Luckily for us, the Tribune, being a responsible journal, was similarly willing to believe that maybe Pridemore's sample was contaminated.

The Tribune recently bought two samples of the chicken nuggets and sent them to the same Nebraska lab. Both tested positive for gluten--including a sample from an unopened box.

The nuggets, said Steve Taylor, the lab's director and a leading allergy expert, "are not safe for people with wheat allergies or celiac disease," often characterized by chronic abdominal pain.

I guess Pridemore isn't stupid, either. Wish we could say the same for the USDA.

The Tribune found that two other "gluten-free" Wellshire products with high amounts of gluten in them. They informed the company of their results:

Wellshire Farms owner Louis Colameco said his products are safe. But he said that in light of the two consumer complaints and recent moves by regulators to tighten "gluten-free" rules, he halted production of the three Wellshire Kids' products in June.

He said he has not recalled the Wellshire Kids products still on store shelves because he believes they are in compliance with federal regulations.

So, even though you know that the products are labeled gluten-free when they are clearly not, even though you have several complaints of children winding up in the emergency room, this murderous clod you think it's OK to leave the products out and available for other children to be sent into anaphylaxis after eating the falsely labeled products. Thanks, Louis. Club any kittens to death recently?

Maybe, Mr.Colameco, you did not knowingly - or even actually - violate the letter of the law. But you've violently gang-raped the hell out of the spirit of it, haven't you? The intent of the law is clear; to help people with severe food allergies find foods that are safe to eat. Your products are NOT safe for people with severe allergies to eat. It should be obvious to any decent human being that these products should be pulled immediately before some other small child bites into his dinner and suddenly finds his esophagus clamping shut and his blood pressure plummets so fast that he can't even call for help as he suffocates in front of his loved ones.

You're a real prince, Louis.

Gluten-Free South Florida; Sun-Sentinel got news for you

I've mentioned this once or twice: I have a condition known as Celiac Disease.  What it all boils down to is that i can't ingest foods with a specific type of gluten; a protein found in wheat, barley, and rye.

This means I have to read a lot of labels, and going out for dinner can be a hazard; even if the food doesn't contain gluten, it can become contaminated if cooked with the same pots and pans and utensils used for gluten-bearing foods.

This past week, the Sun-Sentinel has run not one, but TWO, articles about gluten-free food.

The first is about finding GF foods.  It's actually something they picked up from the LA Times, and it's not even advanced enough to be "gluten-free 101."  It informs you that there's thing called the internet, and you can find GF food vendors on it. There is a link to the Celiac Disease Foundation.  And they mention that "More conventional supermarkets — including some Wal-Marts and Sam's Clubs — are getting into the gluten-free act as well."

They ran a much better story on Thursday; one of my co-workers left a clipping on my desk.  This article describes how GF baking requires mixing different flours together to get the same kinds of results found using wheat flour.

And they had links to a couple of recipes:

• Family Favorite Cookies

• Nut-Crusted Tilapia

I'm always quick to point out their errors; it's only fair that I give them props for reaching out.

Whole Foods Miami; Jorge Drops the Ball AGAIN

This isn't the first time I've written about the Whole Foods in Miami. Overall, it's a nice place to shop; the staff is friendly and courteous and for the most part, helpful.

But not always as helpful as the could or should be, at least at the management level. Sure, they're polite. They look you in the eye, and promise to "address the situation."

They just don't actually DO anything.

In my review of their opening, I did have one major complaint:

...they have a shelf labeled "WHEAT ALTERNATIVES." They had a shelf of breads from Sami's Bakery, but beware!! Two of the choices actually are wheat breads. They shouldn't be in that section at all, and I've mentioned it to someone stocking the shelf last week, but no change has been made. Hopefully, other people with food allergies know enough to read the labels, but if they don't realize that Sami's isn't exclusively a GF vendor, there could be serious consequences.

In fact, at the bottom of that review, there's an update:

I emailed the store manager, and the problems with the WHEAT ALTERNATIVE shelf have finally been addressed.

And why did I think that? Because I received this email in response to my complaint about that shelf:

Hi Christopher,
Thank you for your detailed email.  You are absolutely right with your observations.  I will address all your concerns.  Please continue to communicate any other concerns.
Jorge Sosa
ASTL WFM Coral Gables

Of course, those concerns were not addressed; wheat-bearing breads kept finding their way to the wheat-alternative shelf. I'd mention it to the person behind the bakery counter, who would vaguely nod and look away, or the stock person, who would promise to ask his supervisor. Finally, I asked to see the store manager.

What I got was Jorge.

Jorge is a pleasant enough guy. He came right over, and agreed that the item clearly didn't belong on the shelf. He even asked the stock person why the stuff was there, and the stock guy replied that Sami's made wheat free products. They do; but they don't make EXCLUSIVELY wheat-free products, any more than Coca-Cola makes EXCLUSIVELY sugar free soda. Jorge concluded that Brooke, the bakery manager, just lumped all the Sami's products together, assuming they were all wheat-alternative. Honest mistake.

I pointed out that the problem wasn't so much that they were keeping all the products together; the problem was that they were all together in a section dedicated to products that didn't contain wheat, an allergen that affects a significant portion of the population. People should read labels, but most folks will trust Whole Foods to label its foods correctly. And if they do that here, that will lead to hives, nasal congestion, airway congestion, abdominal cramps, nausea, vomiting, muscle cramps, and joint pain. It's not pleasant to have a wheat allergy.

He promised - AGAIN - that it would be addressed, and that he'd discuss it with Brooke, and that they'd remind staff not to make assumptions regarding brand and food allergies.

I saw no reason not to believe Jorge; he said he understood how serious food allergies were, and that he'd address the problem.

But he didn't. The problem wasn't addressed, it still hasn't been addressed.

I was in there today, and there were the offending loaves, lo-carb wheat bread mixed in with the "Wheat Alternative" products. So I went to the Costumer Service desk, and in short order I was talking to Jorge again.

"Oh, yes," he said. "I remember you. We talked about this before. I'll take care of this."

"Great," I said. "I'll wait."

That stopped him. "What?"

"I'll wait here while you fix it. You can pull the loaves off the shelf, or take down the sign; whatever."

This flummoxed him. "I'm going to address it. I'll meet with Brooke and take care of it."

I pointed out that that is what he told me LAST time, and here we are.

"I did address your problem; I met with Brooke and took care of it." he repeated

"Obviously not," I replied, "because here we are, and there it is."

"I'm sorry sir, but I will take care of it." Very polite, but firm.

"Great," I said. "I will watch you do it, and we can all sleep tonight."

"I'm not going to fix it NOW; we have a system."

Just so you know, we're talking about a dozen loaves of bread; he could have dumped them into a grocery cart and been done with it. That's all I was expecting. A show of faith on his part. But I didn't get it.

"Jorge," I said as patiently as I could, "you've had MONTHS to address it, and you haven't. MONTHS. Does somebody have to get sick before you'll take care of this?"

"No, I don't want anyone to get sick! I will take care of it"

"Great! So fix it. I'll wait, so I know that it's been done."

"Not right now - but I will address it. Is there anything else I can do for you?" his eyes are glazing over, and he's starting to sweat.

"After someone ends up in an emergency room? You are telling me you'd rather let people get sick than actually take care of this problem."

"No, I'm not saying that! I will address it, but not now! Is there something else?" his smile is forced. I'm pretty sure he was wondering if he could have security throw me out.

The thing is, there was absolutely NO reason for Jorge not to fix it right then. What if it had been rotten meat, or moldy produce? The effect is exactly the same; the person who consumes it gets sick. All I was asking was for him to move a few loaves of wheat bread off of the "wheat alternatives" shelf. And he would not do it.

Now I have to wonder, would he pull that rotten meat? I'm not so sure, now. And now I have to wonder what OTHER products are mis-labeled in the store; are all those products REALLY organic? What about the vegan items? Customers trust that their grocers are putting the right products on the right shelves.

With a store like Whole Foods, it's an entirely greater area of responsibility; we make an effort to go out of our way to Whole Foods, because we are trying to lead healthier lives. Sometimes, it's a matter of choice; we feel that "organic" products are healthier, or we're seeking a wider variety of choices to support a diet that meets a moral imperative. And many of us go there because we have special dietary needs that are not met at main-stream markets.

Jorge dropped the customer service ball. And he was stupid about it; having admitted that this was a repeat of a problem that he'd promised I wouldn't see again, he utterly failed to resolve it; not only to MY satisfaction, but to any reasonable standard of service.

It's unacceptable for a manager to fail so miserably at customer service. The fact that he could have fixed the problem inside of two minutes with minimal effort only underscores his utter lack of commitment to meeting his customer's needs.

I accepted his promise that he would "address" the issue on two separate occasions. Since the problem wasn't solved, it was time for Jorge to step up his game. Instead, he made the exact same empty promises, KNOWING that he'd already broken them.

That makes Jorge worse than merely incompetent; that makes him a liar. Either he lied when he told me that he'd addressed it earlier, or he's lying to me now. Or he's lying about understanding the problem.

The bottom line is that Jorge had a chance to prevent people from getting sick, and he chose not to do it. He apparently thinks it's better to risk people's health and well-being than to actually do his job. Maybe he didn't want to offend Brooke; maybe he thought that the store's bureaucracy was more important than the health of his customers. By doing nothing, by putting it off until a staff meeting sometime in the future, he has put his customers at risk of illness, and that's unacceptable.

I find it hard to believe that Whole Foods is a health store that doesn't give a crap about your actual health.

Happy New Year; hope you don't spend it over the toilet. Which is more than I can say for Jorge Sosa.

Article on Celiac Disease

AlterNet has a great article about Celiac Disease. Newsweek also had a good write-up in honor of Celiac Awareness Month.

Articles like these make a huge difference: over the last five years, I've been seeing more and more gluten-free foods in my local Publix. I still make trips to health food stores, but I'm no longer having to get quite as much there as I used to, and my wallet feels the difference!

UPDATED! Whole Foods Coral Gables: Store Review and Gluten Free Assessment

You might have heard that the Whole Foods in Coral Gables finally opened. I've actually been there twice, but the first time I wasn't thinking about writing a review.

Tere has published her review, and a few others have also published their reviews. The other reviews tend to be about the selection of organic goods, or 'green' products, and the amenities of the store. I'll mention the store's physical plant, too, but my primary reason for shopping there is to fulfill my special dietary needs. And that's how my review is skewed.

I suffer from celiac disease. It's an inherited condition; basically, I can't tolerate a protein called 'gluten', which is found in wheat, barley, and rye. There is only one treatment option: a diet excluding those grains, and derivatives of those grains. The good news is that there are lot of foods I can eat; the bad news is that wheat is often added to them. I read a lot of labels.

I still do most of my shopping at Publix; rice and potatoes are GF. Fresh vegetables, most frozen ones. Meat, chicken and seafood are fine, as are most dairy products. Lots of staples, and even Publix is adding more GF products to its shelves all the time.

But there are some GF foods that I have to travel to get; GF breads, pastas, snacks and prepared frozen dinners. I can get a few items at Healthland on Miracle Mile (and do!) and I can find a few more at Wild Oats. But the best selection until now was the Whole Foods in Aventura. I've been waiting for the San Remo store for a long time.

THE STORE ITSELF

The first thing I have to comment on is parking: or rather, FINDING it. All the signs for their parking garage are found on the side of the building the parking entrance is actually ON. There's nothing in front of the store (where there is a valet parking service) or the other side that tells you that there is a garage. Once you find it, it's Exceedingly Well Managed. There were at least a half dozen employees direct traffic up there. It won't last, of course. That's a lot of traffic management, and I consider this a design flaw of the store. You shouldn't need that much manpower to manage traffic flow for a supermarket.

I found a spot - not really that difficult despite the number of cars up there - and headed for the Garage entrance to the store. There are two decent sized elevators down, but no stairs or escalators going down. There is an escalator going UP, and it's along side an ingenious rail system to bring your grocery cart up. Unfortunately, they have to use one of the two elevators to bring the carts back DOWN. I consider this to be another notable design flaw in the store. Elevators can only hold so many people, and you inevitably end up with a bottle neck. The design should have included a staircase or escalator down into the store.

But things pick up once you're in the store: you have a choice in carts: of course you have the traditional carry basket and standard rolling cart, but you have a THIRD choice: comething like a large carry basked, but on wheels with a handle to pull it. And there's a fourth design that is two metal baskets stacked over each other on four wheels. Oh, and the motorized things for people who need them.

My last comments on the plant: the beer case isn't well located, and again this is just poor design, and the express lanes are in the middle of the other lanes, making them hard to find and hard to get through. There's a reason they are placed at then ends of the cashiers in virtually every other store in the country. I'm not impressed with the layout of the store overall. Traffic flow is hampered by the transitions between the traditional aisles in the center of the store and the produce section on one end and the....um, all the other stuff at the other. What stuff? The bakery, the wine department, the deli, the cheese shop, the coffee shop, the a la carte counters, and the Sushi Maki concession. That's right, they don't simply serve sushi, they have Sushi Maki doing it.

GLUTEN FREE:

As expected, the store has a wide variety of GF foods spread throughout the store. But lack of clear labeling makes them difficult to find unless you already know what you want. Wild Oats has a GF tag that is very obvious, and they simply tag the shelf next to the product's SKU label. Another chain goes a step further, using color code in addition to the big "GF".

They have all the pastas you'd expect, and the best selection of GF flours and baking mixes I have ever seen. Mixes for cookies, cakes of all flavors, breads and muffins - there are a lot of choices from a lot of manufacturers.

They have a good selection of GF pizzas, but they only carry one brand of frozen crust, and it's not the best one by a long shot. Guess I'm still trekking to Wild Oats in Pinecrest for that. Similarly, there wasn't a lot of selection of frozen bagels.

They do have a freezer case of their own GF product line, and the cakes, scones, cookies and pies are pretty good; the breads, on the other hand, are very dense and crumbly, and not like anything that I call bread. But if you like pie, you're in business.

They had some GF meals from Glutino that I haven't seen before, and they are quite good. With the GF selections from Amy's, the Tandoor Chef, and the Ethnic Kitchen, I now have a tasty selection to pop in my microwave when I get home from a long day at work.

They also had some GF corn dogs; I LOVE corn dogs, and the ones at the regular markets add wheat flour to the batter. I can't wait to pop these in the oven.

Over in the Baker section, they have a shelf labeled "WHEAT ALTERNATIVES." They had a shelf of breads from Sami's Bakery, but beware!! Two of the choices actually are wheat breads. They shouldn't be in that section at all, and I've mentioned it to someone stocking the shelf last week, but no change has been made. Hopefully, other people with food allergies know enough to read the labels, but if they don't realize that Sami's isn't exclusively a GF vendor, there could be serious consequences.

So they had a shelf of "wheat alternative" breads that only actually had ONE type of wheat-free bread, a shelf of croutons from Sami's, and a shelf of millet snack chips from Sami's and a shelf of millet lavash from Sami's, they didn't have any hot dog or hamburger buns from Sami's. They also didn't have any of the similar products from the Deland Bakery. The Deland products are actually a little better than Sami's, but just barely. Deland makes a killer GF bagel, and this Whole Foods isn't carrying any Deland products. They really should.

Another bewildering lack: they aren't stocking Redbridge Beer. This is a gluten-free beer from Anheuser-Busch, making it the first mass-produced GF beer in general distribution. They were carrying New Grist, another GF beer, but they've priced it higher than I've seen it at other stores, and frankly, Redbridge is a better beer. The Publix on Monza carries Redbridge, so it's not a disaster for me, but it's an odd thing to skip.

The other odd thing is the location of the beer case: usually, it's adjacent to the wine section. Beer and Wine, what could be more natural? Instead, it's tucked several aisles away from Wines, as if the Wine department doesn't want to be sullied by the presence of beer. In fact, the beer section isn't near ANY of the other refrigerated cases. If you use logic to find stuff, you will be as stumped as I was. It took me fifteen minutes to find it. It's inexplicably in the coffee and tea aisle, which has its own refrigerator case for iced teas.

And do you know what's REALLY odd about that? Across the store, and adjacent to the Wine Department, they have an entire COFFEE SHOP. They not only MAKE coffee by the cup for you, they actually ROAST beans there. They have bins of fresh-roasted coffee, and bags of whole-bean and ground gourmet coffee ready to go, as well as some gourmet teas.

And it's half the store away from an aisle of coffee and tea products! It's about the most stupid thing I've ever seen, after hiding the beer in the same bizarre location.

To be fair, the fact that they roast beans fresh in the store balances the idiocy of putting coffee beans and teas in two completely different places. I like fresh coffee, I grind my own beans for every pot, and now I can get the beans fresh out of the roaster. But they'll need to stock Redbridge if they want me to quit grumbling about the beer section.

Overall, my experience at Whole Foods was a positive one. The store has been crowded both times I've been in, but the staff seems to be maintaining its cool, and they've been keeping shelves stocked and lines moving smoothly. There were lots of tasting stations, and they caused the same traffic jams they do in every store, but no worse. The store is clean, the staff is friendly and helpful, and once you know where the parking is, getting in and out is no worse than any other store. I am mildly disappointed in the GF selection, but only because it leaves me still having to visit other stores to complete my shopping. (I've only been to one store EVER that had it all: Ada's, over in Fort Meyers.)

One last note: I did want to put in a request for my "missing" products at the suggestion board by the cashiers: I've done this at the Aventure store with good results. This store has the board up, but no suggestion slips, pencils, or a box to slide them into.

Grade: B+

**************************************************************
I emailed the store manager, and the problems with the WHEAT ALTERNATIVE shelf have finally been addressed. He also added products from the Deland Bakery to those selections.

No luck yet on bagels, pizza crusts, or RedBridge beer. Sigh.

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