Thursday, May 26, 2011

Boy With Down Syndrome Getting Black Belt

I ran across this article today and thought I would share it. Another example of what people with Down syndrome CAN do!



PLANO (CBSDFW.COM) - On Wednesday an 11-year-old Plano boy will achieve something many other kids his age have not. Eric Ford is receiving his black belt in Tae Kwan Do and he’s managed to accomplish the goal despite being born with Down syndrome.

“He does everything all the other students do,” explained Eric’s instructor John Drew, of Action Martial Arts in Allen. “He does his patterns, forms, board breaking, sparring.”

Eric, who also has Juvenile Diabetes, has been training at Action Martial Arts for the last four years. To date, his disability hasn’t stopped him from thriving in an athletic field few have mastered.

“I was kind of leery of knowing if it was the right fit or not,” said Eric’s mother, Anita. “He’s come a long ways from the first time he walked on the mat.”

Experts say achieving the level of black belt doesn’t come easy. “It takes a lot of practice, a lot of repetition, a lot of hours in the gym,” Master Drew said. “For Eric, it’s been a long journey and he’s done a great job.”

“They treated him as an equal from day one and that’s something I truly respect,” his mother said. ”He loves to come because he loves it, but he also loves to come because it’s unconditional love here.”

Eric is taking another major step on his journey. On Wednesday, at 5:45 p.m., he and several other students in his class are testing for their first-degree black belt.

While Eric is just relieved to finally reach his goal, his mother hopes her son will encourage others to strive for theirs. “I hope Eric is an inspiration to all individuals with Down syndrome. That’s always been something we’ve had to work around.”

Four years after that hard work began Anita says she’s glad she enrolled Eric in the program that has helped him grow physically and mentally. “I knew that it would also add so much to his life,” she said.

Interestingly, Eric’s mom and dad started taking Tae Kwan Do classes soon after their son began, but he holds the higher rank.


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Wednesday, May 18, 2011

Documentary of an Italian College Student with Down Syndrome

This came through one of the Down syndrome listservs I'm on and I thought I'd share.

TRY I WILL! is a documentary film narrating Luigi Fantinelli’s experience. A 22-year-old Down syndrome student attending the University of Bologna, he is the first intellectually disabled person (of the 2 million students who have taken part in the European Erasmus programme since 1987) to be granted a Socrates/Erasmus scholarship to study at the University of Murcia in Spain. 

(http://ohnestativ.wordpress.com/category/try-i-will/)




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Monday, May 16, 2011

Dallas Couple with Down Syndrome




By JAMIE THOMPSON
Special Contributor 

On a cold, gray afternoon, a young woman sat inside a brick duplex in East Dallas, waiting. It was 5:30 p.m. Time for her husband to come home.

She walked into the kitchen and took two plastic bags out of the refrigerator, a hot dog in each. One read, “For Christi, for Monday.” The other read, “For Austin.”

Christi had learned many things during her first year of marriage. Not to sweep dirt under the clothes dryer. Not to put her husband’s suit pants in the wash.

No one had thought she would ever fully live on her own, much less be a bride.

A bus pulled up across the street, and Christi headed for the front porch. Austin, a dark-haired 33-year-old carrying a brown leather briefcase, stepped off.

Christi’s face brightened.

-----

How they got there on that winter evening, with the microwave beeping and the dryer humming, is a story that spanned more than two decades and 2,000 miles, a story of two people who thought they would be alone forever, then met.

The story of Austin Davenport and Christi Hockel began with an abnormality in their genes, the presence of an extra 21st chromosome, or Down syndrome.

What that diagnosis meant to their parents was a million dreams that seemed suddenly lost. Kindergarten. Prom. Graduation. The grief almost swallowed them, and then it toughened them, and then it taught them to forsake the children they had longed for, and instead accept the ones they had.

If they hadn’t done that, if they hadn’t recast their dreams and rebuilt their plans, there never would have been a first kiss or a walk down the aisle.

It could have been a much sadder story.

Because they will tell you, that is how the story began. With heartbreak.

-----

Austin’s mother, Nancy Davenport, waited in her hospital bed after giving birth to her third child one night in 1978. Her husband had gone home to look after their other two children.

Finally an elderly pediatrician arrived, looking grave. Her son, he said, appeared to have “mongoloid” features.

The first image that came into Nancy’s mind was a picture from a college biology textbook, of a grown man wearing a diaper.

The doctor left, and Nancy lay alone again, overtaken with shock and disbelief. As it neared midnight, she rang the nurse’s bell.

“I want to see my baby,” she demanded.

A nurse arrived carrying a tiny bundle and laid it before her. Nancy burst into tears.

Nancy, then 33, carried the newborn home, full of questions and fears about how she and her husband were going to raise a disabled child, along with two others, then 4 and 7 years old. She didn’t have the immediate solace of Internet chat rooms or the instant reach of Google searches. Instead, she hit the library and began making calls.

Within six months, Nancy was on a plane with Austin to Seattle , where researchers in the Experimental Education Unit at the University of Washington were trying to prove that babies with Down syndrome could learn far more than anyone had believed. They helped her teach him to crawl, then walk, then talk.

The average baby needs only marginal parental guidance to learn those basic tasks. But children with Down syndrome — with about half the IQ of the typical child — must be dragged through their early development. It is tedious, pain-staking work.

Nancy, a former high school English teacher, was a goal setter, a To Do-lister. And with every milestone Austin reached, her vision for him became more clear: that he would be as much as he was capable of. That he would, like her other two children, have his own life, long after she was gone.

-----

And that is why she found herself at the public school nearly every day, asking teachers to accept Austin into their classrooms. She believed that if he were going to function in the “real” world, he needed to be around the “regular” kids.

Administrators in the Richardson Independent School District heard the hard stubbornness beneath her soft voice, and finally, by the time Austin was in the seventh grade, he was removed from special education courses and fully included, a rarity at the time.

She instructed teachers that, while he might lag academically, he should be expected to follow the rules — to sit in his desk, to raise his hand before speaking.

“I have concluded that people will put up with a lot — with someone’s inability to hear or walk or even talk — as long as they’re socially appropriate,” Nancy says. “That became my biggest goal for Austin, that he behave well.”

At home, when it was clear Austin was being defiant, she gave him two spanks with a wooden spoon, the same as her other two children.

“It sounds horrible,” she says. “But if you saw him today, you would say it worked.”

He was outgoing. Social. He learned to swing dance and sing on key and scored roles in the annual theater productions at Lake Highlands High, belting out the lines as the boxer’s manager in Guys and Dolls.

He graduated with his class, enrolled at Richland Community College, and then finally got a full-time job in the mailroom of a computer software company in East Dallas.

Then he wanted to live on his own.

Nancy and her husband bought a duplex off Mockingbird Lane. Austin would live on one side, and a schoolteacher from their church on the other, getting free rent in exchange for looking after Austin.

As Nancy prepared to leave him there for his first night, she braced for an emotional goodbye.

But Austin just smiled. “Goodbye, Mom,” he said, then shut the door and disappeared inside.

That night, despite her worries and fears, Nancy couldn’t deny a deep feeling of satisfaction.

At 23 years old, Austin had launched.

-----

Austin’s life began to unfold in the blocks around his duplex. He rode the bus to work every morning. He sang in the church choir. He was soon on a first-name basis with the wait staff at IHOP. His days, Nancy believed, were fun and full.

What she hadn’t anticipated was the void of his evenings and weekends. Austin now spent much of his free time alone.

At night, he fixed dinner by himself, usually a quarter of a deli roast chicken and some microwaved carrots. Then the duplex would alight with the glow of the television set, as he settled on the couch for hours of Full House reruns or superhero movies.

As the days passed, he seemed to grow sadder, quieter. He couldn’t always find the words, but it was clear what he felt.

Lonely.

-----

And just about then, just when his mother knew something had to change, he met Christi.

It was at the National Down Syndrome Congress in Minneapolis, in 2004.

Christi Hockel, then 25, was born in a small town outside San Francisco, the youngest of six children. She, like Austin, had accomplished more than anyone thought possible. She had danced as Clara in the Nutcracker ballet and could recite lines from Shakespeare.

Among the hundreds of teens and young adults at the conference, the pair stood out. They were among the most social and independent. They were drawn to each other, their parents believed, because they could talk to each other.

At an evening dance, as the conference drew to an end, Austin walked toward her.

And this is how Christi remembers the rest:

“Something in his mind said, ‘I want to dance with this girl.’ He came over and asked me to dance. I said yes.

“Then I guess I made the first move. I kissed him. I kissed him that night … the first night we met.

“And I’ve loved him ever since.”

-----

After the conference, they ran up a phone bill of hundreds of dollars. Then Austin flew to California. And Christi flew to Dallas.

Before long, they approached their parents to ask for something no one had dreamed possible.

They wanted to get married.

Austin’s mother was reluctant.

She still spent a significant amount of time looking after Austin. Did she want to take on responsibility for Christi, too?

And Christi’s parents didn’t know if their daughter was prepared to live on her own, away from the large network of family in California.

“Wait until you’re 30,” Austin’s mom, Nancy, told them.

They waited the three years. Then, after Austin’s 30th birthday, they came back and asked again.

One afternoon, Austin wept in the car.

“I’m lonely,” he told his mother. “I want Christi here.”

-----

Christi wore a lace embroidered gown and carried red roses as she walked down the aisle. Before a crowd of 250, the couple pledged to spend the rest of their lives together.

Sitting in the first pews were their parents. Christi’s had been married for 49 years, Austin’s for 43. They knew how to make a marriage work, and they also knew how hard it can be. They were prepared to help this one, with all its complications, succeed.

Christi and Austin flew back to Dallas together in October 2009. Christi unpacked her bags in the duplex, which quickly filled with evidence that it was now her home, too: a Tinker Bell nightgown in the closet, a bottle of Lady Stetson perfume on the vanity.

Like many bachelors, Austin had some difficulty adjusting to the presence of his wife — and all her stuff — in his home. He sometimes got frustrated by the dozens of colored pencils she left scattered across the kitchen table, where she worked on her My Little Pony coloring books.

While Austin was at work one day, Christi walked to the Dollar Tree and bought several packages of glow-in-the-dark stars. She spent hours sticking them to the bedroom walls. When Austin returned from work, she guided him to the room, then turned off the lights. The room glowed.

“Look, honey,” she said with excitement.

But Austin frowned. He didn’t like it.

To help guide them through the conflicts, Austin’s mother found a young married couple, a seminary student and her husband, to live on the other side of the duplex. They took Austin and Christi grocery shopping and kept track of their whereabouts. In exchange, they received discounted rent.

Emergencies did arise, such as the time Christi overfilled the coffee pot, sending water streaming into the oven as she baked a meatloaf. It tripped the circuit breaker and caused an explosion of sparks, a terrifying reminder of all the things that could go wrong.

Christi also had trouble adjusting to the freedom that came without the daily supervision of her mother. Right away, she gained 15 pounds, a dangerous health risk because of a heart condition.

“It’s scary, having her so far away,” says her mother, Judie. “I see where her weaknesses are.”

Christi has her driver’s license and can speak conversational Spanish, but has the dangerous habit of looking down when she crosses the street.

They work on those skills when Christi flies home to California every month to spend time with her family. After a day or two, she starts talking about Austin, and how much she misses him.

Before the couple met, Christi’s parents had thought her life was full, busy with hospital volunteer work and her large family.

But now, when she retreats to the apartment above her parents’ garage, they see the loneliness in the life she led before Austin.

-----

That winter evening in Dallas, as Austin walked up the steps, Christi stepped forward to meet him.

“Hi, honey,” she said, her arms circling his waist.

Inside, Austin took off his tie, and Christi carried the hot dogs to the table. They began to eat and talked about their plans for the evening — grocery shopping with the neighbors, then finishing Salt , the Angelina Jolie spy thriller.

Later, Christi put on her nightgown, and Austin wore his flannel pajama pants. Then they climbed into bed and said goodnight.

And there, beneath the glow-in-the-dark stars, they fell asleep together.



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Tuesday, May 10, 2011

Learning How to Swallow Pills

One of the most challenging parts of giving a lot of vitamins and supplements to a young child is how to get them to take it. Often times, they taste gross, so that adds a big challenge.

O has taken his vitamins well for a long time now (since he was 8 months old!). We usually mix the vitamins in Apple Butter or some kind of organic fruit spread. Using Nutrivene-D's Microencapsulated formula also makes a huge difference. It helps mask the taste a lot!

Well, now that O is getting older (6 yrs old), we decided to try a pill swallow cup that we had heard about years ago. That cup is the...





We tried it with a couple of the older kids who have difficulty swallowing vitamins and it worked just as described. So, we tried it on O the next day and what do you know, it worked with him too! Perfect-o!

It hasn't been without it's challenges though. O likes to stick his tongue in the little pill spot. I think it's just the way he drinks with this cup, since it's slightly odd shaped.

But......

We've been able to work around that. Some of the vitamins (particularly the fish oil gel capsules) tend to get stuck in the little spout at times. So, we stick the vitamin in O's mouth and then have him drink out of the cup (without the lid on). And we remind him to drink & swallow.

It works pretty much every time. He just needs to get it down a little bit better. But, we haven't had any hiccups with it for a couple days.

So, here's to hoping we can be moved to all capsules or pills by the next time we have to order Nutrivene!


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Monday, May 9, 2011

Recipe 15: Gluten-Free Chocolate Chip Cookies..again

I had posted a recipe a little while back for a gluten-free chocolate chip cookie recipe.  Those cookies were good, but not totally delicious. So, my little sister, who is the baking queen of the house found a new chocolate chip cookie recipe and it's totally delicious!

Where she found the recipe, I'm not sure. But, she more than likely made most of it up or combined certain recipes (she makes some of the best desserts doing that).

My cousin said long ago, that since we've gone gluten-free (himself included), he has yet to taste a chocolate chip cookie that doesn't taste gluten-free. This recipe did it. They passed his approval as tasting just as good as any chocolate chip cookie. You'd never know these were gluten-free.


So, here is the recipe. (Remember there is a printer-friendly button at the bottom of each post)

Gluten-Free Chocolate Chip Cookies
Yield: 3 dozen cookies

Ingredients:
1/2 cup shortening or lard
1/4 cup white sugar
3/4 cup brown sugar
1 egg
1 1/2 tsp. vanilla extract
1 1/4 cups rice flour (or other GF flour)
1/2 tsp. salt
1/4 tsp. guar gum
1/2 tsp. baking soda
3/4 tsp. cream of tartar
1 cup GF chocolate chips



Directions:
1. Preheat oven to 350 degrees.
2. In a large bowl, cream shortening with sugars until light and fluffy. Add egg and vanilla. Add flour, salt, guar gum, baking soda, and cream of tartar.
3. Mix in chocolate chips.
4. Drop dough by tablespoons, 2 inches apart on a cookie sheet.
5. Bake 7-9 minutes or JUST UNTIL edges are light brown (unless you want crunchy, hard cookies).
(The cookies WILL NOT look completely cooked when you pull them out of the oven)
6. Let cookies cool on a wire baking rack or the cookie sheet for 5-10 minutes. This will allow cookies to retain their shape for eating.

Enjoy!

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Saturday, May 7, 2011

Doing Something, a Little Bit, or Nothing?

Recently there was some discussion on the Einstein-Syndrome list in regards to what can be done for babies with DS.

Some people may say giving certain supplements at a young age is a little too much, some may give just a few things to their child and as they get older give more. But, there are others who want to do as much as possible and give their child everything they can, that is safe, to give their child the best chance.

We ride the fence in between the two. So long as we are well researched in what we are giving O, we will give it to him at any age. If we are uncertain in it, then we will wait or start at a low dose.

There's neither a right nor wrong. Personally, I think it is best for some supplements to be started at as early of an age as possible, while there are other supplements, that I feel will be fine to be started at a slightly later date. When I say later, I mean 12 months old or so. In "early age", I'm talking about 1 month old or less.

With that said, there was one mother from Finland, Tuija P. who shared her experiences and I thought it was interesting. With Tuija's permission, I'm posting it up here. Tuija has had the "advantage" of seeing people with DS in several generations, as she will describe.

I see around me here people with DS in three generations. My own sister, now 33, her boyfriend, just turned 60 and then our little precious daughter "S," 17mos.

The 60-year-old man is very sweet natured, but has never spoken understandably nor had any other means of communicating. He has been living in a group home until recently, as he had to move to a more guarded facility because he has developed Alzheimers and started wandering outside during the night. Fortunately he hasn't had any other DS related complications.

My sister. When she was born, it was very uncommon to take such a baby home. My sister was fortunate in that sense. She had no nutritional treatments, a little therapy of some kind, went to kindergarten with typical kids and then to special school, where she didn't learn much, barely to read and write. She has been an easy child and adult as well. She learned to speak just understandably before school age. She has never been very high functioning academically. She had leukemia when she was 10 to 12, but survived that. From then on she has been considerably overweight. No one has really paid attention to that. She is living in a group home, the same as where her boyfriend was living, is happy there and has learned many new things during her adulthood. Nowadays she is very skilled at quilt making, for example.

She has always been a very typical such DS person, who hasn't had any special treatments or targeted intervention in any way. Just so much mental delay that it has not been possible to have any real relationships with typical people. And she has never been capable of taking care of herself very much.

After those experiences my situation wasn't the easiest one to have a child with DS. Ok, things could have been worse, but I didn't know any worse.

Ok, with that as an intro, here we are anyway with our sweet little girl "S." I got to know about DS while still pregnant and when I finally accepted the idea of having a child with DS, I knew nothing would stop me from doing everything I can to make life as good for her as I can. From then on we have been on TNI. We started prenatally.

I don't know life without "S" on TNI, I could only guess. "S" was born with a severe heart condition which required two open heart surgeries when she was 5 and 6 months old. But even before the surgeries "S" didn't suffer very much from her heart condition. She was an alert and active baby, started moving around the age of 3mos.
I stopped supplements during the stay in the hospital, both because of the surgeries and for my own ease of mind as I don't have any medical professionals here who support TNI. She recovered well and in the hospital she was undoubtedly the happiest baby there.  The hospital stay didn't seem to affect her development.
She has done well in all areas, though she has the typical delays and difficulties as well. She has been very healthy, no ear infections or many flus. She continues to be very active, playing with others and by herself, wanting to be held and hugged, laughing a lot, talking a lot, trying to say words occasionally. She is more of baby than our other kids in that age, but a very normally behaving baby so far.

I'm not saying TNI has definetely had an influence on her, but at least it is not doing anything bad. "S" is now on Nutrivene-D, probiotics, DHA, Longvida curcumin, acethyl-L-carnitine, CoQ10, cognizin citicholine, & gingko biloba. The last four we just recently started.
From my experience so far, "S" hasn't had any side effects and has been doing all together so well that I'm not going to stop giving any of those. I don't think I would have started gingko or those other three any earlier though. I haven't seen any leaps in development nor any regression either, just steady development. I haven't been doing as much research as many of you though.  I'm just reading your experiences and trying to think something in between. Some could say I am experimenting with my child, but honestly this is the only way I can do it.

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Thursday, May 5, 2011

FDA & Gluten-Free

This doesn't really have anything to do with Down syndrome. But it does have something to do with Celiac Disease and being gluten free, which a lot of people with Down syndrome deal with....our family included.

It's absolutely absurd that the FDA can't define "gluten-free."
 
How hard can it be?!

By Lyndsey Layton, Thursday, April 28, 10:21 PM

For seven years, the Food and Drug Administration has been trying to answer this question: What does it mean to be “gluten-free”?

That is roughly the time it took to build a tunnel beneath the English Channel to connect Britain and France.

In the meantime, foodmakers have been deciding for themselves whether they can jump into a lucrative new niche and market their products as free from gluten, a protein found in wheat, rye and barley. As a result, some products labeled gluten-free contain no gluten, others might have a trace and still more could contain a sizable amount.

That murkiness is creating a real problem for an increasing number of Americans whose health depends on avoiding even tiny amounts of gluten, which is commonly found in bread, pasta and other staples and even in some unexpected products, such as soy sauce and blue cheese.

Celiac disease, an autoimmune disorder in which gluten damages the lining of the small intestine, afflicts about 3 million people in the United States. Exposure to gluten can trigger problems ranging from gastrointestinal distress and infertility to an increased risk of certain cancers.

And new research suggests that an additional 17 million Americans are “gluten-sensitive,” which means that they, too, are sickened by the protein and can experience abdominal pain, fatigue, headaches, “foggy mind” or tingling extremities.

The treatment is straightforward: a lifelong commitment to a gluten-free diet.

‘Should be a no-brainer’

Under a 2004 law, Congress gave the FDA until 2008 to establish a uniform definition for companies that want to label their products as gluten-free. But that deadline has come and gone.

“The FDA has spent years calling upon experts to have open-forum debates, town hall meetings — we’ve been having reiteration and reiteration,” said Alessio Fasano, medical director of the Center for Celiac Research at the University of Maryland School of Medicine. “They’ve been reiterating and listening to Grandma, Grandpa, people on the street corners. . . . I really don’t understand why it’s lingering up in the air when it really should be a no-brainer.”

In the meantime, Fasano said, the prevalence of celiac disease in this country is soaring partly because changes in agricultural practices have increased gluten levels in crops. “We are in the midst of an epidemic,” he said.

And that has caused an explosion in gluten-free foods. The market is projected to reach $2.6 billion next year, up from $100 million in 2003. Gluten-free cereal, snacks and other foods carry a premium price, creating an alluring growth market for food companies.

Some drugmakers are also producing gluten-free coatings, fillings and capsules for medication. Gluten-free blogs and specialty bakeries are sprouting like wheat. And the gluten-free diet has acquired a faddish lustre that is undoubtedly helping drive sales; stars including Gwyneth Paltrow and Oprah Winfrey have dabbled in life without gluten and boasted how their “detox” diets helped them feel better and more energized.

But what exactly does gluten-free mean?

Three years after the congressional deadline, the FDA is still working on that question, a spokeswoman said.

The agency has said the issue is complicated, requiring analyses of various technical issues, including how well manufacturers and regulators can reliably test for the presence of gluten and whether oats are a source of gluten. The agency held a public meeting in 2005, inviting input from millers, foodmakers, medical experts and others, and published a proposed rule in 2007.

And then it continued to study the matter.

Meanwhile, Canada, Brazil, Australia and an international body — the Codex Alimentarius Commission — have all set labeling standards for gluten-free items. In most cases, that standard is 20 parts per million: A food can be labeled gluten-free if it contains less than 0.0007 of an ounce of gluten for every 2.2 pounds of food. That level was chosen largely because it’s the minimum amount of gluten that can be reliably detected.

‘Gluten-free’ water?

With no uniform standard in the United States, some foodmakers scrupulously monitor products labeled gluten-free to ensure that they have not come into contact with wheat or other gluten sources. They test their ingredients, segregate equipment so there is no chance for contamination and test the finished product.

Others are less stringent. They might fail to test their products or might allow small amounts of gluten but still label their foods as gluten-free.

In some cases, manufacturers affix the labels to items that don’t naturally contain gluten, such as milk and bottled water.

“Everyone is trying to get on the bandwagon and get a piece of this market, and consumers are being misled,” said Andrea Levario, executive director of the American Celiac Disease Alliance. “People see a ‘gluten-free’ sticker on bottled water and they think, ‘Does that mean I should be concerned about other bottled waters?’ It’s very confusing.”

In the absence of a federal standard, two organizations have formed to certify foods as gluten-free for a fee from the manufacturer.

But for many consumers, it’s buyer beware.

In North Carolina two weeks ago, a man was sentenced to 11 years in prison after he was found guilty of buying regular breads and rolls and repackaging them as gluten-free under the name Great Specialty Products. Dozens of people complained of illness after eating the baked goods, including a woman who gave birth to a 31 / 2 pound baby prematurely, a complication that can result from celiac disease.

“We thought it was fantastic because it tasted just like real bread,” said Rebecca Fernandez of Raleigh, who gave it to her son, Malachy, who has celiac disease.

Within days, an angry rash covered the then-2-year-old’s body. “We thought maybe it was chickenpox,” Fernandez said. He ate the bread for two weeks, as the rash intensified and turned bloody, until Fernandez realized the problem and stopped giving him the bread. Malachy suffered from diarrhea for four more weeks.

“I called the police because this guy had basically poisoned my son,” Fernandez said. “They said it wasn’t really their thing.”

Her call to the FDA’s Charlotte office in December 2009 was not returned, she said.

She finally contacted the North Carolina Department of Agriculture, which regulates bakeries in the state, and an investigation led to the conviction of Great Specialty Products owner Paul Seelig, 48, on 23 counts of obtaining property by false pretense.

FDA spokeswoman Pat El-Hinnaway said the agency “has no history” with Great Specialty Products or Seelig and has not investigated the company.

To pressure the FDA to speed up its work, activists are bringing a 13-foot-tall gluten-free cake to Capitol Hill on May 4. “Doesn’t it seem strange that Congress would have issued a mandate and years go by and it hasn’t been done?” said Jules Shepard, an organizer and author of gluten-free cookbooks who sells gluten-free flour and cake mixes. “It seems like the FDA is breaking the law, and it’s time to do something about it.”

El-Hinnaway, the FDA spokeswoman, said in an e-mail that “efforts are now underway” to publish another document in the Federal Register and reopen the matter to another round of public comments. The FDA will then “consider the comments,” the findings of a safety assessment and “other factors” to develop a final rule.



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