New Study Needs Participants to Help Researchers Predict the Onset of Celiac Disease & Uncover How Gut Bacteria Influences Autoimmunity

By Elisabeth Veltman, The Tender Foodie

The Center for Celiac Research at Massachusett's General Hospital for Children (MGHfC) and Harvard Medical School has just announced a new and exciting study into celiac and autoimmune disease and enrollment is now under way.

It is an international, observational study, and world renowned researcher, Alessio Fasano, MD and his team are looking for 500 little participants from the United States and Italy. Infants 6 months of age or younger, with a first degree relative who has celiac disease (mother, father, sibling) can participate through the Center’s clinical research study called “CDGEMM,” which stands for Celiac Disease, Genomic, Environmental, Microbiome and Metabolomic Study. This isn't just incredibly exciting for those with a predisposition to celiac disease, it is exciting for all of us.

Here's why.

When I first interviewed Dr. Fasano in 2011, he had recently published his discovery of a new type of immune response to gluten, called "gluten sensitivity." He taught us many things in that series of interviews, including the latest algorithm in testing for celiac disease, which has improved the accuracy of diagnosis, and has also helped people avoid a painful, and sometimes unpredictable biopsy of the small intestine.

He also noted how research into our immune reaction to gluten is essential for every human on the planet right now:

1. First of all, no human being has the enzyme to digest gluten (read more).
2. Second, our antiseptic, pesticide loving world may be killing off important bacteria that helps most of us turn off any reaction to the undigested gluten particle (read more). The killing of our "microbiome" could be one reason why everyone in your posse has "suddenly" come down with mild to serious symptoms when consuming gluten-laced foods.
3. Third, since celiac Disease is the only autoimmune disease that has a clear trigger (gluten), scientists may be able to learn how to better treat, cure, or manage other autoimmune diseases, like diabetes, multiple sclerosis, and rheumatoid arthritis through research on celiac disease (read more).
4. In our latest interview (TB Published April 26, 2014), Dr. Fasano mentioned the microbiome's importance to our brain health and also mentioned this CDGEMM study (here is the paper).

The study will seek to uncover how celiac disease can be predicted before it begins, through changes gut bacteria and other means. This is vitally important for those with celiac disease and the serious complications that can arise from late diagnosis. Children with a first degree relative have an 8-15% chance of developing celiac disease themsleves, and the rest of the population has a 1% chance. 1 in 133 people have celiac disease in the U.S. right now. Although not an autoimmune disease, gluten sensitiviy is an immune reacton and 24 million people are suspected of being on the gluten sensitivity spectrum with mild to serious symptoms.

“Celiac disease is a very complex disorder that can affect many different systems in the body. Along with environmental and genetic factors, we think that the microbial colonies these babies have in their gut are very significant in the pathogenesis of celiac disease and possibly other autoimmune disorders. . .”

". . . When we realized that we might be able to pinpoint a biomarker that predicts which one of these infants might develop celiac disease or type 1 diabetes, it was not such a far leap to see that this could possibly play a role in the prevention of autoimmune disorders. By expanding the study, we’ll be able to take a really in-depth look – both in terms of the magnitude of the microbiota and the length of our study – to examine the genomic, environmental and metabolomic factors that precede the onset of celiac disease.”

~ Alessio Fasano, MD, director of the Center for Celiac Research and division chief of the Division of Pediatric Gastroenterology and Nutrition at MGHfC, the principal investigator of the study

In plain English, this study will be very strategic, and encompass many factors including environment, genetics, gut health and bacteria, and metabolomics (involving the chemical processes of our metabolism). As with many studies, scientists embark with an objective, but when a clear strategy like this is involved, scientists can develop a relationship to our every day lives, as well as find some intriguing and unexpected results.

The research team includes:

• Alessio Fasano, MD
• Maureen Leonard, MD
• Mark A. Salvatore, MD
• Martha (Pacetti) I. McInnis, RN, MSN, CPNP
• Pam Cureton, RD, LDN
• Gloria Serena
• Craig Sturgeon
• Stephanie Camhi

For general questions about the CDGEMM study, email CDGEMM@mgh.harvard.edu. To enroll, or inquire about enrollment, please contact a participating center nearest you. Read the press release here.

You can also download an informational pamphlet with a few more details here.

Opinons on Food Allergies in Schools. Journalism or Narcissim?

The Reason for the Rant

I don't often rant or use this blog for that purpose. I feel that there is enough "opinion" out there. Uninformed opinion that is geared to gain attention and attract traffic. What the world needs now, is not ranting, but sound information that we can use, and that is what I strive to do.

However, there have been several opinion pieces about food allergies recently that deserve a response. The piece that spurred me to rant today was posted in the Huffington Post Blog (click link to read the article) yesterday by an author who is very upset. Her daughter can't have a birthday cake in school because of "those" kids with food allergies. The author herself has an egg white allergy, and when she was a child she knew a peanut-allergic girl who had died from eating a Twix candy bar containing traces of peanuts. She acknowleges the "skyrocketing number of food allergies and intolerances" (then proceeds to improperly diagnose), yet, she still believes that what works for her, an adult, and what worked for food allergic kids when she was growing up, should still work for kids today.

• Even though the number of people with allergies, sensitivities, and celiac disease have skyrocketed, gotten more complex, and the reactions more varied and sometimes more severe.
• Even though many kids could have damaged intestines from celiac, tummy aches, headaches, flu-like symptoms, long-term complications... and that we should care about this suffering as well.
• Even though some kids are so sensitive that having allergens in the air could cause a reaction.
• Even though kids are dying from anaphylaxis at such a rate that state governements are enacting laws for schools to allow trained personnel to use emergency autoinjectors.
• Even though the CDC just released a guide for schools to help them naviagate this complex problem.
• Even though life threatening food allergies and celiac disease are considered a disability by the American with Disabilities Act, section 504
  
• Even though 25% of emergency epinephrine injections given in schools involved kids who did not know they had an allergy at the time and that more than 15% of school-aged children with food allergies have had a reaction in school.
• Even though what worked when the author was growing up did not work very well. A little girl died.

The complete lack of compassion in this article is what spurred me to respond to the post, and also post it here, because I know that this author is not alone in her frustration. Sometimes a person can become so annoyed with day-to-day circumstances that they don't realize that they are being a real jerk. It's OK to be frustrated, it is a frustrating problem to have the basic needs and joys like food banned in schools, and we should listen to those who are frustrated. But sometimes people don't think beyond their emotion to realize that there is a lot more research to be done before drawing such an opinionated conclusion in public. I'm hoping that this is the case for this author, and I'm hoping that my passionate response to the article will help educate others who might feel the way that she does. I hope that this exchange will spur this discussion about food in schools to a much, much higher level.

A friend of this blog said it best: A school is a place of learning. This parent is missing a wonderful, teachable moment of putting others' needs first, and she is placing her convenience over the needs of a child. Another Tender Friend who has no food issues in her family offered that there are many, creative ways to celebrate a birthday, like bubbles and silly string (although these would have to be checked for allergens, too). On that wonderful creative note - what about taking silly pictures with your classmates? Writing a poem to celebrate the birthday boy or girl? These are things that can have a lasting, positive impression for everyone in class. These are activities that teach real emotional, mental and physical skills as well as celebrate the occasion. What a wonderful thing to walk away from your birthday celebration with such solid memories to keep for years to come. What joy!

Further, what a wonderful thing to think beyond ourselves, since this often spurs us to some of our most creative thinking! I personally can't stand seeing even one little kid feeling ostracized or alone because of quirks, religious orientation, race, creed, disability, family problems, or food issues - especially when just a little creative thinking and care can help grow loving and confident kids who feel like they belong.

This is a world community problem and a local community problem. It isn't about you. It isn't about me. It's about taking care of each other, caring for each other, and solving a very, very tough problem together.

So here is my rant. Feel free to rant back.

"While I empathize with the author's frustration, I think it is unwise to post an article in such a public forum based solely upon opinion, and personal experience, feelings and frustration; and without proper journalistic research. This article doesn't take into account the incredible rise in serious allergies, the rise in deaths from the same, the rise in other types of food reactions that kids are having to multiple foods. It also has no sympathy or regard for the kid that might have intestinal damage because of celiac disease, or flu like symptoms or a tummy ache because of sensitivities or slow onset allergies. It also discusses children as if they were adults, capable of making the same type of rational, spur of the moment decisions necessary to turn down that brownie. Kids don't know brownies are made w/ egg. Kids also are very physical - they kiss, hug, tumble, throw or even spit food in play. I empathize more with schools who have to figure out what is safe for their students and what is appropriate action to take so that each child is cared for, than with parents who no longer can make cupcakes. And I love cupcakes. I empathize with the parents of FA kids who put their kids into the hands of uneducated people every day. The kindest of people can make a mistake, and that is the sad part of this all. No one intends to harm with food. Food should be good for us and delicious and enjoyable. But the reality is that millions of people are having several different types of immune reactions to it. So something is wrong.

We are a community, and this is a community problem. We can't take the narcissistic position of, "I"m sick of this" and serve the solution to this growing problem appropriately."

Sincerely,

Elisabeth Veltman

The Tender Foodie

Learn more about this subject

What is a Food Allergy, Anyway?  A list of food reactions and what they mean.

The CDC Guide for Managing Food Allergies in Schools:  an excellent guide for schools and parents.

Emergency Auto-Injector Law Has Passed

How Can Parents Feel Less Stress with a Food Allergic Child in School?: Interview with Melanie Potock, MA, CCC-SLP, of www.mymunchbug.com

Be True to Your Heart, Dear Celiac: an excellent post by Brandy Wendler, RN, MSN, ACNP-BC, spokesperson for celiac disease and heart disease, and Ms. Northwest Territories Intl.

Still More ...

Should Anyone Eat Gluten? (Part 1) Interview with world-renowned researcher, Alessio Fasano, MD

How to Get Tested For Celiac Disease (Part 2) Interview with world-renowned researcher, Alessio Fasano, MD

Gluten Sensitivity, a New Food "Allergy" (Part 3) Interview with world-renowned researcher, Alessio Fasano, MD

Other Responses to This Article

Food Allergies in the Classroom: Using Science and Empathy to Drive Your Cupcake Decisions
  by Sheela Raja, PhD in the Huffington Post, Feb. 24, 2014

Released Today: The CDC Guide to Managing Food Allergies in Schools

Today,October 30, 2013, the Centers for Disease Control & Prevention (CDC) published “Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs." It is the first national comprehensive guidelines to help schools manage food allergies in their facilities and with their students.

This guide was created for schools, but I think every parent should download it and read it. It will help parents with food allergic kids understand what you can expect from schools, and also help parents of kids who have no food allergies understand why these regulations are in place. It might even help a parent save a kids life.

A Quick Snapshot of the Guide

The guide was created with the help of a team of experts, including federal agencies with the expertise in food allergies, consumer organizations who give advice on the clinical management of food allergies (like FARE and The American Academy of Pediatrics), organizations who represnt professional groups who work in schools, like school nurses.  They also worked with one school district, one state education agency, and two parents of food allergic kids.

The guide also takes into account the emotional needs & symptoms of food allergic kids, as well as guidelines on how to deal with bullying. Emotional needs are important, as well, since "the peanut table" can be a very lonely experience, as can be being forced to eat in the nurse's or principle's office.

The guide describes the symptoms of a classic allergic reaction, and how to recognize it as such from a clinical perspective, including mental and emotional symptoms. A child, for instance might have a sudden mood change or have a "sense of impending doom." I've certainly experienced this as part of a food allergy reaction, and I'm super glad that they included emotional symptoms in the guide.

The guide also gives examples of how a kid might describe a classic allergic reaction (one that might result in anaphylaxis). Here are a few examples:

• It feels like something is poking my tongue.
• There’s a frog in my throat; there’s something
• stuck in my throat.
• My tongue feels full (or heavy).
• My lips feel tight.
• It feels like there are bugs in there
• (to describe itchy ears).

A very important component of the guide is the strategic planning and framework section. It helps the schools set up a system for the school so they can properly and quickly respond to an emergency, and document any emergency, so they can learn from any incident that might occur. This includes guidelines on professional development and training for any staff who has frequent contact with food allergic kids.

It also sets up a system for each child to help prevent and reduce the risk of any emergency, including child/parent education. How many times have we heard that a parent didn't realize that their food allergy posed such a risk for their child? The parent didn't learn from the doctor who diagnosed the child, but learned from an emergency room visit?

There are several sections that describe how to put these guidelines into practice, including checklists and recommended practices from the cafeteria to the bus, to field trips, to outside groups who use the school. 

Finally, the guide gives a clear description on the Laws that govern food allergies:

• Section 504 of the Rehabilitation Act of 1973 (Section 504)
• the Americans with Disabilities Act of 1990 (ADA)h
• Governing Statutes and Regulation for U.S. Department of Agriculture’s (USDA) Child Nutrition Programs (CNPs)
• Individuals with Disabilities Education Act (IDEA)
• Family Educational Rights and Privacy Act (FERPA) of 1974

...and a very comprehensive list of federal resourses to help schools and individuals find and understand the laws.  These are listed at the end.

This is an incredible resource with a great deal of information, that is very well organized. 

Download it here:  Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs.

You can also read more about this, and find other resources on the FARE website.

Edison Grainery: How I Fell Back in Love with Orzo.

This is gluten-free orzo. Photo courtesy of Edison Grainery (copyrighted)

Breaking up & Making up with Orzo

"Mr." Orzo. Those pasta pearls of happiness also known as “Risoni” or “Big Rice” to his family and friends. Sadly, I had to break off our relationship when I went gluten-free.  We had different needs.  Such is love.

Not to worry, I have fallen in love once again, but this time it is oh, so much better!  Just in time for Valentine’s Day, I’m head over heels for Edison Grainery’s gluten-free orzo.   I’ve never found this particular shape of pasta available as a gluten-free option and was anticipating a touch of disappointment when the "new" Mr. Orzo and I met in person.  After all, we were introduced on line.  It all started with facebook…how embarrassing.

It Started with a Gluten-Free Recipe

Photo courtesy of Edison GraineryI noticed a recipe on facebook for a light orzo salad that was gluten-free.  The recipe introduced me to  the new Edison Grainery facebook page, which I liked, of course.  Edison Grainery is the offshoot of Edison Grains, one of the leading bulk suppliers of “high quality, certified organic ingredients around the globe.” Edison Grainery  is, essentially, a mini-version of the company, created for families, and offering “organic ingredients in a family-friendly #5 and one pound bag at extremely competitive prices.”   Family-friendly indeed – so much so that the owner emailed me, thanking me for my order and telling me she had visited MY facebook page too.  She wrote that she would like to know more about what I do to help children learn to try new foods.  

Before chatting with her, I wanted to test the waters to see if I was remotely attracted to the products. I was most interested in getting to know Mr. Orzo and maybe his friend “Q Mac” as in “Quinoa Mac –n- Cheese”.  It was time.

Green on the Outside, Scrumptious on the Inside

I opened the box. Hmmm…the first thing I couldn’t help but notice was the way Mr. Orzo and his friend, Q Mac, were dressed in GREEN earth-friendly packaging.  The bags are designed to stand-up in your pantry, have a re-closable zipper and are backyard compostable.  Very nice first impression.  

I won’t go into too much detail on my new love life except to say: It’s the real deal – this orzo-love.  Big Rice and I are in a permanent relationship.  It’s that delicious.  And I confess, Q Mac and I have something going on too.  Crafted from Kosher, certified organic rice and quinoa flours, Q Mac serves up perfectly al dente with a medium-aged cheddar cheese sauce that is similar to a delicate alfredo.

Healthy Salt? 

Photo courtesy of Edison Grainery
For a finishing touch, I added a touch of Himalayan Pink Salt.  The company explains that “by replacing ordinary table salt with Edison Grainery Himalayan Pink Salt, you provide your body with 84 essential minerals and support proper absorption of nutrients. It can also normalize blood pressure; eliminate toxins and help balance your body's electrolytes and pH levels.” I just bought it because it was pink, but I’ll take any added healthy benefits I can get.   Amy Barnes, the owner of Edison Grainery, tells me the color reflects the levels of minerals and iron and can range from white to a very deep pink.

SPECIAL OFFER

We feel that every saltshaker should sprinkle out Himalayan Pink Salt. To help you make the change, we're giving a complimentary 12 oz. bag of Pink Salt with every $40 order now through the end of February, 2013!  ~ Anna, Edison Grainery

Life Changing Moment, Affordable Organics

Which brings me to my phone call with Amy.  We chatted for over an hour.  Turns out, she is committed to developing a gluten-free product that appeals to the texture-sensitive taste buds of kids with feeding issues, especially autism.   I was struck by her compassion – Did she have a child with autism?  No, just a life changing experience that opened her heart.

In 2009, Amy was diagnosed with 3 kinds of cancer and Celiac disease, to boot.  For 18 months, she watched a lot of TV as she sat on her couch and asked “Why me?”  One day, she stopped asking “Why me” and said:  “Show me.” It was then that her mission became clear: MAKE ORGANICS AFFORDABLE.  Edison Grainery was born.  Affordable, organic, gluten-free and more.  For me, knowing that story makes every bite of orzo, Q Mac or any Edison Grainery Product even more scrumptious. 

Good for your belly, good for the earth, good for your soul.  I’m in love.

Quick Processing Facts - Edison Grainery

Here are a few facts -- some of which are not yet on the Edison website.

Facility: 

Separate gluten-free facility for all gluten-free products, gluten-free certification expected in the Spring/Summer 2013

Certified Organic

Certified Kosher

Organic:  certified organic products & facility

More Gluten-Free Facts

A large majority of Edison's gluten-free whole grains are cultivated in areas where wheat doesn’t grow; Bolivia, Peru, and Ecuador, and Mexico; gluten-free certification expected in the Spring/Summer 2013

Oats are tested for gluten <10 ppm (upcoming gluten-free laws will require <20ppm)

READ MORE...

ABOUT MELANIE

Melanie Potock, MA, CCC-SLPMelanie Potock, MA, CCC-SLP, of www.mymunchbug.com.  Melanie is speech language pathologist who specializes in feeding.  Her work brings her into the homes and schools of her clients, kids, who for various reasons have difficulty with food or with eating. She works with kids and their parents to develop effective strategies that help children become “more adventurous eaters”.  At least 50% of her clients have food allergies or intolerances, and for them, “adventurous eating” takes on a special meaning.  Melanie is also the author of Happy Mealtimes with Happy Kids” and the executive producer of “Dancing in the Kitchen.”

More Posts from Melanie

Why Children with Autism are Often Picky Eaters

Review:  The Magic of the BellyFull Kit (From the Hopeful Company)

How Can Parents Feel Less Stress with a Food Allergic Child in School?

Ten Ways to Get Your Kid to LIKE Veggies!

BY GUEST BLOGGER & KID EXPERT, MELANIE POTOCK, MA, CCC-SLP of MyMunchBug.com

2012 is about to end (and the world too according to the Mayan calendars, but let's not worry about that now).   Are you making New Years' Resolutions?  Perhaps you are determined (or mortified) after your kids turned up their nose once again to Grandma's Thanksgiving green bean casserole  and thus, you are already muttering: "In the new year, I am going to get my kids to eat more vegetables." Hmmm...yeah, right.  Maybe you are just hoping the Mayan's are correct and you won't have to tackle vegetables in 2013.

But seriously...it could happen - kids actually eating veggies that is. As a pediatric feeding therapist who specializes in teaching kids to eat new foods, let me share with you my top ten list for getting kids to LIKE vegetables: 

• #10 Eat yours and smile.  Set the example.  That’s where to start.
• #9 Grow.  Veggies that is. Even a window box of salad greens is fun for kids to snip, wash and tear into a bowl for you.  If that’s the best your little one can do that day, then celebrate it! “Wow, this salad is filled to the brim with beautiful greens that you cut for ME! Looks DELISH and I bet it will taste that way too!  Thank you!”
• #8 Hang out with your kids in the produce isle.  Be creative as you search for the perfect veggie.  Tell your child, “I need a crown of broccoli with 8 “trees” on it.  Can you find one that size?" Hand him two bunches to examine.  Now he’s holding broccoli, counting the trees and talking about that vegetable.  
• #7 Polish up on your food jokes:   “What do garbage men eat?”  Answer: “Junk Food!”  I’m serious here folks – food should be fun!
• #6 Cook with your kids and don’t give them the boring jobs, like peeling carrots.  Learning to eat any new foods is all about exposing kids to the foods over and over and over.  It has to be more than putting veggies on their plates.   Even the littlest one can join in, especially if you use a safety tower to help them participate at the counter or the sink.
• #5 Dance in the Kitchen!  This award-winning children’s CD is filled to the brim with songs that celebrate the joy of food!  Play “On Top of Spaghetti” to signal everyone to come to the table for Pasta Night!  Or, how about a silly operetta all about peas?  Download it free here (good till December 31st, 2012).
• #4 Use “Family Style” serving plates or bowls.  Pass the serving dishes around the table and establish  the rule that everyone puts a little bit of everything on their plate.  If your kiddo protests, give him the role of “Master Server”,  allowing him to dish up everyone’s plate and thus, be exposed to the new foods several times in one meal.  Sometimes the first step to eventually eating a vegetable is just spooning it onto a plate.  Taking that first bite may be weeks away.  That’s fine.  Hang in there and proclaim him “the best at balancing Brussels sprouts on a silver spoon!”
• #3 Work your way to swallowing.  Nothing wrong (except fashionably) with a little carrot lipstick, a big fat kiss on a piece of cauliflower or seeing how long you can hold a lima bean in your front teeth before dropping it back onto your plate.  Food games help kids become more familiar with new smells, tastes, texture and temperatures of vegetables.  Chewing and swallowing are a more advanced skill and sometimes take a bit more time.
• #2  Chase it.  Make sure everyone has a water cup with a lid and a straw.  A chaser of water is a simple way to wash down a new food.  Remember your first sip of black coffee?  You probably swallowed it pretty darn fast and grimaced at the bitter aftertaste.  Now, you drive by that big green circle known as the Starbucks™ sign and suddenly, you HAVE to have a Latte.  When kids chew a new veggie for the first time, the sensations can be overwhelming.  Using a straw helps to wash down the new taste more efficiently than an open cup of water.   Don’t call a lot of attention to it, but allow your child to chase his veggies with water until he can manage to swallow small, chewed bites on his own.  And...
• The NUMBER ONE way to get your kids to eat their veggies…(drum roll please): Keep it joyful. Learning to eat new foods is a step by step process.  Take it slow…keep it fun…enjoy the journey!

ABOUT MELANIE

Melanie Potock, MA, CCC-SLPMelanie is speech language pathologist who specializes in feeding.  Her work brings her into the homes and schools of her clients, kids, who for various reasons have difficulty with food or with eating. She works with kids and their parents to develop effective strategies that help children become “more adventurous eaters”.  At least 50% of her clients have food allergies or intolerances, and for them, “adventurous eating” takes on a special meaning.  Melanie is also the author of Happy Mealtimes with Happy Kids” and the executive producer of “Dancing in the Kitchen.”

More Posts from Melanie

Review:  The Magic of the BellyFull Kit (From the Hopeful Company)

The 12 Days of Christmas -- My Favorite Lunchtime Things (Part 1)

Tips to Help Your Food Allergic Child Belong During the Holidays

How to Talk Turkey (and Food Allergies) at Thanksgiving

How Can Parents Feel Less Stress with a Food Allergic Child in School?