Celiac Disease Insights from Shelley Case – Part 2

Gluten-Free7smIn September of 2009, a very important Celiac Conference took place and Shelley Case was the only dietitian asked to speak. She was kind enough to speak with me and share a lot of eye opening information about the road blocks celiac patients still face.  Last week, we talked about negative aspects of the celiac blood tests. Assuming one gets past that hurdle and moves on to the all important endoscopy, even more problems can arise.

For many years, the gold standard for a celiac diagnosis has been the biopsy, via an endoscopy. Finally, many celiac experts are considering the fact that the “gold standard” test might look more like tarnished silver these days. In fact, those words were used in the title of one of the conference sessions. Shelley Case shared with me some of the many problems discussed about the test during the conference. While it’s excellent that this information is finally coming out into the open in the medical field, the many problems can certainly not be corrected overnight. For that reason, the false negatives and “inconclusive test results” will likely be handed out to patients for a while.

First off, many doctors do not take a sufficient number of biopsy samples from the intestine when looking for evidence of celiac disease. Experts recommend a minimum of 4 to 6 samples and some doctors take as many as 8-10.  An insufficient number of samples being taken can result in false negative test results if the samples are only taken from healthy villi. Experts now know that it’s also important to take a sample from the duodenal bulb. It’s possible that the damaged villi might show up only in this area which means if no sample it taken from the duodenal bulb, a patient could be told they don’t have celiac even though they do.

Other issues plague the road to a biopsy proven celiac diagnosis. The biopsy samples may not be cut and stained properly, which can also result in inconclusive (or false negative) results. As many of us know, inconclusive results often lead to patients being told to eat whatever they want to because they don’t have celiac disease. Another problem is the not all pathologists interpret the biopsy samples the same way. Some believe that only totally flattened villi can result in the conclusion that the patient has celiac. However, there are varying degrees of damaged villi. Due to the many obstacles current celiac testing methods present, it’s believed that as many of 20% of endoscopies looking for evidence of celiac result in a missed (or wrong) diagnosis. IBS seems to be the most commonly given mis-diagnosis when a patient actually has celiac disease. No surprise there, of course.

I’ve got to backtrack to the celiac blood tests for a moment. At the Chicago conference, Peter H. Green, MD, discussed the fact that there is something called inter-lab variation going on, which is a big problem. This was proven when the same blood panels were sent to different labs and in turn, different results were given by the lab techs interpreting the panels. That is why Dr. Cynthia Rudert in Atlanta (and many celiac experts) will only send celiac panels to a few trusted labs, including but not limited to, Prometheus Labs.

It’s all coming together now, right? Many people who did have biopsies (that I’ve personally met) were told they did not have celiac went on the gluten-free diet anyway. Many found out that being gluten-free resolved most, if not all, of their health issues. The most understandable explanation for this is that they either have celiac and the biopsy was done incorrectly, or they have gluten intolerance. Either way, the treatment is avoiding gluten.

Celiac experts are in agreement that many road blocks still exist in getting some people properly diagnosed with celiac disease. Fortunately, there is much more awareness and education in the medical community about the condition now, than just a few years ago. From my own personal experience, doctors typically do not like to admit that they are wrong. So, my hat is off to the celiac experts who are telling it like it is in an effort to actually improve the situation. The experts also agree that family doctors, dentists and dietitians are in great need of being thoroughly educated abut celiac disease. After all, what does it matter if the blood tests and biopsies are not being done – or interpreted – properly if a patient never gets to those stages of testing?

The latest edition of Shelley’s book The Gluten-Free Diet: A Comprehensive Resource Guide is now available for those who are interested in educating themselves about what is and is not gluten-free. The book covers proper nutrition guidelines for people following the gluten-free diet. Oh, and the fun stuff is in the book too – like where all the gluten-free bakeries (in North America) are and a listing of over 3100 specialty gluten-free foods. If you thought there was no such thing as a gluten-free Cheeze-It (type) cracker, think again!

Special thanks to Shelley Case for her meticulous note taking during the conference. She got into some things that I can’t understand myself enough to explain here. It was a conference for doctors and not patients for a reason. Next week we’ll talk about gluten intolerance and the introduction of gluten to infants.

Gluten-free Blogger of the Month: Erin Smith

profileSince the first time I visited NYC over ten years ago, I’ve loved it. When I went in 2008, well into my gtuten-free journey, I wondered how much engineering work was there, in case I could convince my husband to move there. If there was such a thing as a gluten-free NYC tourism board, people would think I was on their payroll due to all the shout outs I give the gluten-free options in the Big Apple. Part of the reason that NYC has so many fabulous options is that the NYC Celiac Meetup.com Group is very active in affecting change in the city. Erin Smith runs that group along with some other volunteer helpers.

In addition to being gluten-free for most of her life and running the Meetup.com group, Erin finds time to write the blog, Gluten-Free Fun. I’m not sure where she gets all the energy to do so much but I’m sure glad she does what she does. No trip to NYC is complete without checking out Erin’s blog for all the latest and greatest gluten-free news.  Recently, this gluten-free super hero took some time to answer some questions I had about how she has grown her Meetup.com into such an impressive size.

TJ: Erin, your group is now 1000 members strong. I’m sure organizers of similar groups would love to know how you’ve grown your group to such an impressive size. What are your tips – or secrets – that others might be able to use to improve their own groups?

ES: The rapid growth of the NYC Celiac Disease Meetup group is something that surprises me every week. As the organizer, I receive an email every time a new member joins the group. Not a day goes by that we don’t get a new member. I really contribute most of our growth to search engines on the Internet. If you type in “New York City” and “Celiac Disease” we are the very first link that comes up and I believe this is how most people find us. On the Meetup.com website, I can choose topics that closely align to our group. Our current Meetup topics include Celiac Disease, allergies, and gluten-free. These keywords on our website also help others to find our group on the Internet. With the increase of social media over the past few years, I have also tried to connect our groups across various websites. Our Meetup group has a Facebook page and I am always promoting our group events on my blog, Gluten-Free Fun. Additionally, many of our group members have Twitter accounts and they post about our upcoming events. All of this publicity helps our NYC Celiac Disease Meetup group grow each week. I think any group, whether on Meetup.com or not, should have a webpage or blog. This puts your name out there into the digital world and helps others find your group.

TJ: Is it true that when the group first started, the meetings were held at place that didn’t offer anything safe for you to eat?

ES: The NYC Celiac Disease Meetup group was founded in October 2003. The very first Meetup I went to was in the summer of 2004 and attended by less than 5 people. The meeting was held at a bakery in lower Manhattan where we could not eat anything! Originally, Meetup.com organized the venues which is why we went to a place we couldn’t really enjoy due to the gluten-filled menu. The others in the group were nice, but I was kind of turned off from the group due to my disappointment with the location. I started actively going to events later that year once the group got an official organizer and the events were much more gluten-free friendly. Shortly after I rejoined the group, I volunteered to help organize events and the rest is history!

TJ: I’ve noticed that many places in NYC are certified GFRAP establishments. Is that seal of approval from GIG important to most of your members?

ES: Although many of our events take place at GFRAP establishments, not all of them do. We are lucky in New York City to have so many gluten-free options, so I like to plan events that expose our members to a variety of cuisines and locations. A small portion of our group members choose to only attend events at restaurants that do have the GIG seal of approval, but that is the minority.

TJ: How often does your group “meetup” and what type of activities are planned besides dinners?

ES: We try to have one or two organized events each month. Sometimes members plan to meet with each other outside of organized events via our message board. In addition, we often advertise other support group and Meetup events on our website. Besides gluten-free dinners, happy hours, and dessert outings, we have had many different kinds of events. We recently had two successful Whole Foods tours that focused on shopping for gluten-free products. We have attended open houses at both Joan’s Gluten-Free Great Bakes on Long Island and Everybody Eats in Brooklyn, NY. In March, we are helping to promote a fundraiser for the Celiac Disease Center at a modern dance performance by the Paul Taylor Dance Company. Last year, we had an information session with a representative from GIG about the Gluten-Free Restaurant Awareness Program (GFRAP). I try to make our events as appealing to the widest audience possible. I really do wish I could hold more events, but I volunteer as the organizer of the NYC Celiac Disease Meetup group and my full-time job takes priority.

Wow! Just look at the progress this group has made in a fairly short amount of time, relatively speaking. Like I always say, three people a group makes – then it will grow from there. I so hope this information inspires someone to start their own such group.

Special thanks to Erin for your time, not only for this interview, but for all you do in the gluten-free world. You’re appreciated in more ways than you’ll ever know!

Your group

is now 1000 members strong. I’m sure other organizers would love to know how you’ve grown your group to such an impressive size. What are your tips – or secrets – that others might be able to use to improve their own groups?

The rapid growth of the NYC Celiac Disease Meetup group is something that surprises me every week. As the organizer, I receive an email every time a new member joins the group. Not a day goes by that we don’t get a new member. I really contribute most of our growth to search engines on the Internet. If you type in “New York City” and “Celiac Disease” we are the very first link that comes up and I believe this is how most people find us. On the Meetup.com website, I can choose topics that closely align to our group. Our current Meetup topics include Celiac Disease, allergies, and gluten-free. These keywords on our website also help others to find our group on the Internet. With the increase of social media over the past few years, I have also tried to connect our groups across various websites. Our Meetup group has a Facebook page and I am always promoting our group events on my blog, Gluten-Free Fun. Additionally, many of our group members have Twitter accounts and they post about our upcoming events. All of this publicity helps our NYC Celiac Disease Meetup group grow each week. I think any group, whether on Meetup.com or not, should have a webpage or blog. This puts your name out there into the digital world and helps others find your group.
Is it true that when the group first started, the meetings were held at place that didn’t offer anything safe for you to eat?
The NYC Celiac Disease Meetup group was founded in October 2003. The very first Meetup I went to was in the summer of 2004 and attended by less than 5 people. The meeting was held at a bakery in lower Manhattan where we could not eat anything! Originally, Meetup.com organized the venues which is why we went to a place we couldn’t really enjoy due to the gluten-filled menu. The others in the group were nice, but I was kind of turned off from the group due to my disappointment with the location. I started actively going to events later that year once the group got an official organizer and the events were much more gluten-free friendly. Shortly after I rejoined the group, I volunteered to help organize events and the rest is history!
I’ve noticed that many places in NYC are certified GFRAP establishments. Is that seal of approval from GIG important to most of your members?
Although many of our events take place at GFRAP establishments, not all of them do. We are lucky in New York City to have so many gluten-free options, so I like to plan events that expose our members to a variety of cuisines and locations. A small portion of our group members choose to only attend events at restaurants that do have the GIG seal of approval, but that is the minority.
How often does your group “meetup” and what type of activities are planned besides dinners?
We try to have one or two organized events each month. Sometimes members plan to meet with each other outside of organized events via our message board. In addition, we often advertise other support group and Meetup events on our website. Besides gluten-free dinners, happy hours, and dessert outings, we have had many different kinds of events. We recently had two successful Whole Foods tours that focused on shopping for gluten-free products. We have attended open houses at both Joan’s Gluten-Free Great Bakes on Long Island and Everybody Eats in Brooklyn, NY. In March, we are helping to promote a fundraiser for the Celiac Disease Center at a modern dance performance by the Paul Taylor Dance Company. Last year, we had an information session with a representative from GIG about the Gluten-Free Restaurant Awareness Program (GFRAP). I really try to make our events as appealing to the widest audience possible. I really do wish I could hold more events, but I volunteer as the organizer of the NYC Celiac Disease Meetup group and my full-time job takes priority.

Versatile Gluten-free Sandwich Petals

Gluten-free Sandwich Petals from Raquelita’s are one of the most exciting things to hit the gluten-free market in a while. The items are made with ten gluten-free gains, heart healthy Omega 3’s and probiotics.The Sandwich Petals are gluten-free, dairy-free, soy-free and nut-free. I was sent a box containing all three flavors by the company and reviewed them here, but every week I’m finding new ways to use these great wraps!
One of the most remarkable things about these wraps (as I call them) is that they are shelf stable for a month. No freezing or refrigeration required! This actually sounded too good to be true to me, so I tested the promise. We finished up the last wraps 28 days after the shipment arrived – not quite a month but close enough. The result was that the wraps were as good this week as they were four weeks ago. It’s quite shocking to think something this good, that is also good for you can sit out on the counter or in the pantry for so long and not go stale. Below are some of the ways we’ve put this fabulous wraps to use.
Breakfast burrito – scrambled eggs, bacon and cheese
Enchiladas – ground turkey, sauce and Mexican blend cheese
Wrap sandwiches – Peachtree Pimento, tuna salad, smoked salmon
To use the wraps not as wraps, we made a delicious chicken dish with the wraps, chicken breasts and a can of Progresso Three Cheese Enchilada soup. For this simply dish, just layer the wraps on the bottom of a baking pan, spread a little soup on them and add uncooked chicken breasts (use cut up pieces for quicker cook time) and then pour more soup over the chicken. Top with more wraps and add more soup. Bake at 375 degrees until done – 15 to 25 minutes depending on what chicken you use. Breasts take longer than pieces. It’s a tasty, easy to make gluten-free dinner. Serve over rice if desired and add a green salad for a nice meal.
One of the most fun uses for the wrap – not as a wrap – is making pizzas with them. I heated a wrap in a 400 degree oven for about ten minutes and then pulled it out to add the toppings. One of my favorite type of pizzas chicken pesto so I used pesto sauce, cooked chicken, artichoke hearts, cheese and black olives. I put the flatbread pizza back into the oven for about ten more minutes. Seriously, the pizza was fabulous, even though the crust was anything but conventional. I also use large gluten-free tortillas to make this type of pizza but those are too large for one person. For a quick small pizza for one, these sandwich petals are the perfect size.
Chicken Pesto Sandwich Petal Pizza
Chicken Pesto Sandwich Petal Pizza

Gluten-free Sandwich Petals (aka flatbreads) from Raquelita’s are one of the most exciting things to hit the gluten-free market in a while. The items are made with ten gluten-free gains, heart healthy Omega 3’s and probiotics. The Sandwich Petals are gluten-free, dairy-free, soy-free peanut-free, egg-free and nut-free. I was sent a box containing all three flavors by the company to review last month, but every week I’m finding new ways to use these great oval shaped “petals”!

One of the most remarkable things about these wraps (as I call them) is that they are shelf stable for a month. No freezing or refrigeration required! This actually sounded too good to be true to me, so I tested the claim. We finished up the last wraps 27 days after the shipment arrived – not quite a month but close enough. The result was that the wraps were as good this week as they were four weeks ago. It’s quite shocking to think something this good, that is also good for you and only has 90 calories can sit out on the counter or in the pantry for so long and not go stale. Below are some of the ways we’ve put this fabulous wraps to use.

  • Breakfast burrito – scrambled eggs, bacon and cheese
  • Enchiladas – ground turkey, sauce and Mexican blend cheese
  • Quesadillas – chicken, cheese and veggies
  • Wrap sandwichesPeachtree Pimento, tuna salad, smoked salmon & cream cheese, bbq pork
  • Roll-up – chive cream cheese

To use the wraps not as wraps, we made a delicious chicken dish with chicken breasts and a can of Progresso Three Cheese Enchilada soup. For this simple dish, just layer the wraps on the bottom of a baking pan, spread a little soup on them and add uncooked chicken breasts (use cut up pieces for quicker cook time) and then pour more soup over the chicken. Top with more wraps and add more soup. Bake at 375 degrees until done – 15 to 25 minutes depending on what size chicken you use. Chicken breasts take longer to cook than pieces do. It’s a tasty, easy to make gluten-free dinner. Serve over rice if desired and add a green salad for a nice meal.

One of the most fun uses for the wrap is making pizzas with them. I heated a wrap brushed with a little olive oil in a 400 degree oven for about ten minutes and then pulled it out to add the toppings. One of my favorite type of pizzas is chicken pesto so I used pesto sauce, cooked chicken, artichoke hearts, cheese and black olives for the pizza shown above. After adding sauce and toppings, I put the flatbread pizza back into the oven for about ten more minutes. Seriously, the pizza was fabulous, even though the crust was anything but conventional. I also use large gluten-free tortillas to make this type of pizza but those are too large for one person. For a quick small super thin crust pizza for one, these sandwich petals are the perfect size. There are more recipe ideas on the Sandwich Petals website.

The three Sandwich Petal flavors are Agave Grain, Spinach Garlic and Chimayo Red Chile. The Agave petals are not sweet at all, despite the name. The other two flavors are definitely more flavorful than the Agave which is similar to a basic wheat tortilla. As with many gluten-free replacement foods, the petals need to be heated for best texture and flavor.

Now that we are completely out of Sandwich Petals, we’ll take advantage of the 2 for 1 deal currently being offered on Mondays only from Sandwich Petals.  Normally, for $25 you get 36 petals (12 of each flavor) and free shipping. On Mondays, you get 72 petals (24 of each flavor) for only $25. That runs about $.35 per petal and that  is what I call a serious gluten-free deal!

Gluten-free News Roundup

Gluten-free News Roundup
It seems like everywhere you turn these days, gluten-free news is popping up. Of course, if likely only seems that way to those of us who are living a gluten-free lifestyle. Some people don’t like that term, but being on the gluten-free diet is way more involved than simply following a diet. If being gluten-free during every meal (or snack) of every day, week, month and year was easy, family members of people with celiac would not avoid being tested for celiac. Doctors would not avoid testing patients for celiac. Following the gluten-free diet successfully requires a lot of time and even a little skill at times. One has to be a label reader, ingredients expert and product investigator – among other things. There is so much to keep up with that at times, my head is spinning from all the gluten-free news coming at me. Here are a few stories that might interest some of our readers.
Late in December 2009, we found out that having celiac disease is “in” for 2010.  Interesting that a disease can be considered “in”, I think. Here is the Washington Post article in case you missed it.
In January, a rumor about Redbridge beer being discontinued sprouted, but to date, Anheiser-Busch that makes the beer, reports that there are no plans to stop making Redbridge. The representative I spoke to stated that some beverage distributors are choosing not to purchase the gluten-free beer, and suggested people contact their local distributor with questions. Two Publix stores near us have been out of Redbridge for over a month. However, Wildfire (in Atlanta) had it two weeks ago. Here is what Gluten-Free Living found out about the situation.
Zach over at Gluten-Free Raleigh broke a big story that is quite upsetting, but also comforting to know that charletons can’t fraudently sell gluten containing foods as gluten-free and get away with it. At least they can not do this in the state of North Carolina. Zach will continue to cover the details of this unfolding story, which we should all appreciate very much. How this case turns out will no doubt, have an effect on our community at large.
Twitter was abuzz a while back about the fact that Honeybaked Hams are now gluten-free. However, since they have been gluten-free for over two years in my market, I had no idea that was news to some people. Just like Butterball did with their gravy packets, Honeybaked Ham removed wheat from their glaze. Honeybaked Ham and Turkey are gluten-free and the company feels that none of the older products (with gluten in them) are in the market at this time.

It seems like everywhere you turn these days, gluten-free news is popping up. Of course, it likely only seems that way to those of us who are living a gluten-free lifestyle. Some people don’t like that term, but being gluten-free is way more involved than simply following a diet. If being gluten-free during every meal (or snack) of every day, week, month and year was easy, family members of people with celiac would not avoid being tested for celiac. Doctors would not avoid testing patients for celiac and tell people that “you don’t want to have celiac”, as if people had a choice in the matter.

Following the gluten-free diet successfully requires a lot of time, planning and even some skill at times. One has to be a label reader, ingredients expert and product investigator – among other things. There is so much to keep up with that at times, my head is spinning from all the gluten-free news coming at me. Here are a few stories that might interest some of our readers.

  • Late in December 2009, we found out that having celiac disease is “in” for 2010. Interesting that a disease can be considered “in”, I think. Here is the Washington Post article in case you missed it.
  • In January, a rumor about Redbridge gluten-free beer being discontinued sprouted, but to date, Anheiser-Busch that makes the beer, reports that there are no plans to stop making Redbridge. The representative I spoke to stated that some beverage distributors are choosing not to purchase the gluten-free beer, and suggested people contact their local distributor with questions. Two Publix stores near us have been out of Redbridge for over a month. However, Wildfire (in Atlanta) had it two weeks ago. The folks over at Gluten-Free Living were given the same information that I got from Anheiser-Busch.
  • Zach over at Gluten-Free Raleigh broke a big story that is quite upsetting, but also comforting to know that charlatans can’t fraudulently sell gluten containing foods as gluten-free and get away with it. At least they can not do it in the state of North Carolina. Zach will continue to cover the details of this unfolding story about Great Specialty Products, which we should all appreciate very much. How this case turns out will no doubt, have an effect on our community at large.
  • Twitter was abuzz a while back about the fact that Honeybaked Hams are now gluten-free. However, since they have been gluten-free for over two years in my market, I had no idea that was news to some people. Just like Butterball did with their gravy packets, Honeybaked Ham removed wheat from their glaze. Honeybaked Ham and Turkey are gluten-free and the company believes that none of the older products (with gluten in them) are in the market at this time. However, just as with the Butterball gravy, read the ingredients. If you don’t see wheat (the only form of gluten in either item before) listed, the item is gluten-free.
  • Jens Gluten Free blog posted an interesting L.A. Times story about how gluten-free is still a huge buzz word in the grocery trends. It seems clear that the gluten-free market will continue to expand for a long while. Keep in mind that less than 90% with celiac in the U.S. know they have the condition.
  • Just this week, the news from Gluten-Free Philly about Whole Foods discontinuing their gluten-free baking mixes came as a bit of a surprise to some of us. The mixes were not being made by Whole Foods and were rumored to be Gluten-Free Pantry mixes. However, neither company would confirm who was making (or buying what) from whom. There are such things as non disclosure agreements, after all.

If you enjoyed the Whole Foods brownie mix, buy the Betty Crocker gluten-free brownie mix and use 6-7 tablespoons of butter instead of 4. The ingredients are the same – the difference in the taste has to do with the amount of butter called for in each mix. If your local distributor drops Redbridge from their line-up, check out Bard’s Tale, which is now more available than it was when Redbrdige was introduced.  If you don’t like the fact that the U.S. has no gluten-free labeling laws yet (which allowed the NC scenario to happen), please complain directly to the FDA. The toll free number is 1-888-463-6332.

Congrats to the iPhone App Contest Winners!

jennifer 2/8/10
Jessica Coleman
Lisa 2/2/10
Matt Spo
Beth Oswitch
Becky 1.28.10
Mehgan Howell
Sharon 1/31
Roki
Brita StottGFGroceriesHR_products10 10

We’ve chosen 10 winners at random for our new gluten-free iPhone app contest.  Congratulations Jennifer, Jessica Coleman, Lisa, Matt Spo, Beth Oswitch, Becky, Mehgan Howell, Sharon, Roki and Brita Stott. You’ll be contacted via email next week for instructions on how to claim your prize. Why next week? Because it’s  “Snowmageddon” here in Northern Virginia, and we’re currently digging ourself out from under 30 inches of snow and getting ready to dig out of another 16 !

This new App is the iPhone version of our popular gluten free grocery guide. Like the print edition, it lists over 30,000 gluten free foods, making it the largest gluten free product listing available anywhere.

And, for the iPhone version, we worked with one of the most talented iPhone developers in the business. The result is a very fast, powerful App that’s really easy to use. One of the coolest features that we haven’t seen elsewhere is the search function – it actually updates your search results real time, as you type each letter of your query, making it easier to find what you’re looking for fast.

Go check it out on your iTunes! (This link will open up your iTunes program and take you to our app page.)