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

Honey-Infused Chocolate Covered Bacon (using raw cacao)

In the last post, we learned that yes, you can cook bacon naked, and without peril to your naughty bits, if you simply cook it in the oven. It's easy, saves time, does not splatter, and this method helps you save or toss the grease without mess. For this chocolate-covered bacon recipe, you need evenly cooked bacon that stands at attention, so using the oven is the best way to acheive this.

We've also learned that bacon can stop an argument on a dime, just by its mere mention. If this legend is indeed true, then chocolate covered bacon will one day bring about world peace.

For those of you who have removed cane or beet sugar from your diet, the ganache for this recipe is made from honey, and you will love it.

Ingredients

Here is what you will need:

• 1/2 lb cooked gluten-free, thick cut bacon (see this recipe for the perfect bacon)
• 1/4 cup of GF, DF raw cacao powder (here's my favorite)
• 1 TBS organic coconut oil (I love Carrington Farms)
• 2 TBS of local honey
• a small saucepan, or stovetop-safe ceramic dish

(Double this recipe for 1 lb of bacon. If using more than one pound, make the ganache in batches for 1 lb of bacon at a time)

 Recipe

In your small saucepan or stove-safe ceramic dish, bring the coconut oil and honey to a boil by placing the burner on high. It will start to bubble like this:

Keep the pan on the stove until the honey and oil come to a full boil like the picture below. Let it boil for 30 to 45 seconds. No more than 60 seconds as you do not want this to burn. When cold, the ingredients will be separated, but after boiling they will come together and make a sort of caramel.

 

Let the honey and oil mixture cool for 5 minutes. If you place the raw cacoa powder in too early, you may burn it. The mixture should be warm but not hot. When at the right temperature, slowly add in the raw cacao powder a little at a time, stirring to completely incorporporate the chocolate/cacao into the mixture. Keep adding until you get the proper spreading consitency. You will get the right consistency somewhere between 1/8 and 1/4 cup of cacao. I like it a little thicker (so I use almost the entire 1/4 cup), you may like it a little thinner. If you don't use it all, return the extra to the package to use later!

The consitency of the chocolate mixture will look something like this. It will slowly drip off of the spoon, and will be easy to spread.  

Lastly, break the cooked bacon strips in half and using a spoon, spread the chocolate onto one side of the bacon, half way up the strip. Make it a nice thick coat, using the bacon like a spoon. Chocolate lovers can put the chocolate side down on their toungue, while bacon lovers may put the bacon side on their toungue. Each will give you a slightly different experience. Covering one side also helps make the bacon look good on the plate right away. You don't have to use a separate plate to wait for the chocolate to harden and then waste a bunch of chocolate on the plate.

After it hardens a bit, place in the refrigerator, covered, for an hour or overnight. Served best chilled.

Enjoy!  (and have the leftovers for breakfast, seriously).

How to Cook Bacon Naked (in the Oven)

Bacon is one of the most beloved carnivorous foods on the planet. So loved, in fact, that if you find yourself in a disagreement with a friend or co-worker and need to lighten the mood, just pause, look at them whimsically, and say, "bacon." Argument over. If it is a particularly tough argument, say, "chocolate covered bacon," and your friendship will be cemented for life.

You may even know a few vegetarian friends who sneak a little gateway meat once in a while.

Cooking bacon is not as much fun as eating it, however; at least not in a pan on the stove with the spattering and the burning of sensitive skin. Plus, the house smells like bacon for days beyond its cooking and consumption when you bring it home and fry it up in a pan.

So try it in the oven. Guess what? It works far, far better! I've tried a few different temperatures, timings, types of bacon, and this method seems to work the best, and produces the most consistent bacon. If you do it right, the only cleaning is pulling the parchment paper and the cooled grease from the pan and into the garbage... or strain the grease and put into a jar to use later.

Using the oven, you can even make the bacon naked.

How to Cook Bacon in the Oven

What you need:

• large sheet pan with sides
• thick, oven-ready parchment paper
• your favorite gluten-free bacon - thick cut preferred
• you can also use a rack, if you really want perfect bacon

How to do it:

Preheat the oven to 375 degrees F.

Place a large sheet of parchment paper onto the pan. It should be large enough to come up over every side of the pan by about one inch, but not so large that the ends of the paper burn.

If you have a rack, place it on top of the parchment. You don't need one, however, so if you don't have one, don't despair.

Remove the bacon from the package and line them evenly onto the parchment lined pan (or on the rack). The sides of each strip can touch but not overlap. Bacon usually has a skinny side and a fat side. Alternate the strips so that they have skinny sides on top for every other strip. It will feel like you are putting together a meat puzzle.

Place the bacon-loaded pan on a center rack in the oven for 20-30 minutes, depending upon the thickness of your bacon and your desired crispiness.

Check the bacon half-way through to see if it needs to be flipped. If there is excessive grease, you may carefully (very carefully) pour off some of the excess into a can or heat safe bowl until it cools enough to throw out, or save as grease for another dish.

Using a tongs, transfer the bacon to a plate lined with paper towels. Pat dry with paper towels to remove excess grease and serve!

 

"We plan, we toil, we suffer – in the hope of what?  A camel-load of idol’s eyes?  The title deeds of Radio City?  The empire of Asia?  A trip to the moon?  No, no, no, no.  Simply to wake just in time to smell coffee and bacon and eggs." 

~J.B. Priestly (English novelist, playwright and broadcaster)

Why I Started Oil Pulling & How to Do It

WHY I STARTED

A few years ago, I had developed an obsession for organic green tea.

Why? I knew that copious amounts of green tea can flood the body with free-radical eating, anti-cancer, anti-viral, anti-bacterial, liver clearing and cardiovascular supporting polyphenols, and research seems to support this (perhaps in a little more moderation than I employed, however). Green tea is also being studied because those who drink it appear to have a lower risk of many types of degenerative disease. I’ve consumed green tea for years, but at that time I had become obsessed. I wanted to give my bod as much good stuff as I could.

One side effect of this green tea obsession, however, was that it stained my teeth quite badly.

Before, my teeth were normally and naturally white, so seeing my now-tarnished smile was a bit of a shock. A good friend of mine noticed it.  The dentist asked me what I had changed in my diet, because he was also quite surprised. This particular green tea was high in tannins – that’s the stuff where those particular healthy polyphenols live, but it is also the stuff that stains.

I didn't want to use any bleach, and I had also learned that some mouthwashes and other dental products are hidden sources of gluten (gliadin) or tapioca, two proteins to which I’m quite allergic. I needed an effective alternative.

Read more about dental products and gluten here (including a growing list of those claiming gluten-free status).


For these two reason, I decided to try “oil pulling.”

WHAT IS OIL PULLING?

Oil pulling is a simple ancient practice from Ayervedic medicine. Ayerveda is one of the oldest medical systems in the world, originating in India. Ancient cultures used oil pulling to prevent tooth decay, and to strengthen the teeth, gums and the jaw.

The practice of oil pulling is simply swishing a tablespoon of specific types of oil in your mouth for 20 minutes – but in a specific way (SEE INSTRUCTIONS BELOW). The belief is that this practice pulls toxins, parasites, & bacteria from the mouth and head and into the oil through the plethora of capillaries that exist in the mouth.

HOW TO DO IT

Traditionally, unrefined sunflower or sesame oil has been used for oil pulling, but unrefined olive oil or organic coconut oil work very well, too. I prefer coconut oil and its extra anti-bacterial, anti-parasitic qualities.

Ideally oil pulling should be done first thing in the morning on an empty stomach, before you drink any water. However, you can do this anytime and still receive great benefits. Do it as soon as you get up, and while you do other morning activities, like showering or preparing breakfast.

1. Use about 1 TBS of coconut oil (or sesame, sunflower, or unrefined olive oil)

2. Swish the oil slowly and methodically, not too vigorously.


3. Try to make sure the oil reaches every region of your mouth, but don't gargle.


4. Be careful not to swallow the oil.


5. Continue swishing the oil for at 20 minutes (the oil will become very thin and foamy as you swish & your saliva gets in the game). If you need to get used to it, start with 5 or 10 minutes and work your way up.

6. Spit the oil out into a trash can (not down the drain or you will get a clogged drain)

7. Rinse your mouth thoroughly with pure water. To go the extra step (which I love), rinse with mild salt water to help neutralize any bacteria before you brush.


8. Brush with gluten-free toothpaste afterwards.

That's it! Do it every day for a few weeks.  Read more about it below, and report back to us and let us know if you've experienced any results!

MY RESULTS

I started noticing a difference within a few weeks of practicing oil pulling every day -- the first day, actually, because my sinuses started clearing within minutes of swishing with the oil. In fact, the gunk (for lack of a better word) that came from my sinuses was rather remarkable.  After a few months of oil pulling every day (sometimes twice a day), the stains on my teeth were greatly reduced. After several months of oil pulling every day, all but the most hidden stains are gone. My friend noticed a significant difference in the whiteness of my teeth, too, and uncharacteristically remarked on this. I say, "uncharacteristically, because she is very polite, doesn't like to hurt anyone's feelings and has high whiteness standards. So for her to notice the difference was a big deal.

In addition, I recently went to the dentist because I thought that I had chipped a couple of teeth. Tooth like chunks ended up in my mouth on two separate occasions, which made me very worried. These chunks looked like teeth but apparently were not teeth. According to the hygienist, it was probably thick, deep-seated tarter that was dislodged during my regular oil pulling. Really?
Really.

HOW DOES OIL PULLING WORK?

To answer that question, "Does oil pulling work?" you have to try it for yourself. Here is a little more on the philosophy behind it. Above I mentioned the plethora of capillaries in the mouth. Capillaries, very simply put, are the thin walled blood vessels that serve as points of exchange between the blood and the surrounding tissues.

The network of capillaries in the body is estimated to be between 50,000 and 60,000 miles long!

This is why Ayurveda, like Traditional Chinese Medicine, posits that each section of the tongue is connected to different organs, like the kidneys, lungs, liver, heart, small intestines, stomach, and colon. For instance, a Chinese herbalist will have you stick out your toungue in order to see if your liver is sluggish or inflamed.

Thus, your mouth is thought to be a reflection of your overall health and the capillaries in the mouth "could" be the doorways to the rest of your body.

CLAIMS VS. CURE?

People have claimed that oil pulling can also “cure” or “prevent” 30 systemic diseases, including migraines, headaches, sinus congestion, diabetes, and asthma.

There are absolutely no scientific studies that support the prevention and healing of diseases such as diabetes from oil pulling, so please respect your good doctors recommendations for your individual conditions.

One of the reasons that these claims are being made, it seems, is because of a fairly large-scale survey that was conducted by an Indian newspaper in 1996. The survey (not a scientific study) revealed some interesting claims by its respondents. I cannot find a direct link to the survey, but here is a quote and an article about it that I did find:

In 1996, after continuous publication of a regular column for three years in their Sunday edition on OP, Andhra Jyoti, a Telugu daily news paper, conducted a survey to find out the types of diseases cured and the effectiveness of OP. Out of a total of 1041 respondents, 927 (89%) reported cure of one or more diseases. People who did not report any cure were 114(11%).

Read more about this survey on ayerveda.livejournal.com

There is also a small study which compares the use of mouthwash to oil pulling. Perhaps, based upon these results, more studies will be done. This a VERY small study on plaque-induced gingivitis, in comparison to chlorhexidine mouthwash, but it showed some promising results - it appears that the both the mouthwash and the oil pulling were equally effective:

Plaque index and modified gingival index scores were recorded for the 20 subjects and baseline plaque samples were also collected. There was a statistically significant reduction of the pre- and post-values of the plaque and modified gingival index scores in both the study and control groups (p < 0.001 in both). The oil pulling therapy showed a reduction in the plaque index, modified gingival scores, and total colony count of aerobic microorganisms in the plaque of adolescents with plaque-induced gingivitis.

Read more about the holistic oral health practices in this study.

WHY IS IT GAINING POPULARITY?

Oil pulling seems to be gaining popularity in our modern cultures as our environment becomes more toxic, our need to detoxify heightens, and as society craves simpler, less toxic prevention and cure. People with intestinal damage (i.e. from celiac disease) can also have a decay of the bones that hold their teeth in place, so ridding the teeth of plaque promoting bacteria while keeping a healthy balance of good bacteria in the mouth is as essential as healing the gut for oral health. As the above study, tiny as it is, seems to indicate, oil pulling might do as well in getting rid of plaque and bad bacteria than does the most powerful mouthwash. Oil pulling might also help keep the balance of good bacteria in the mouth better than traditional mouthwashes do, too.

I am not sure if I will permanently replace my mouthwash with coconut oil yet, but I intend to oil pull every day for the rest of my life! Personally, I find it to be a wonderful, supportive routine for my health.

Besides my own experience of whiter teeth and clearer sinuses, I have had people tell me that this practice has helped them in other ways. It dissolved their migraines, helped their teeth become less sensitive, and even helped them with their menstrual cramps. This is experiential, however, so it does not take into account any of the many potential and unique layers of health problems that any individual might have.

In other words, oil pulling may or may not give you the exact same results as it does someone else, and you might be surprised by the results that it does give you.

A FEW SIDE NOTES

Auyervedic Herb Note: In the links above you will read more about Auyerveda. If you decide to visit a practitioner or try some of the herbs, please make sure you choose high quality herbs that are not produced with heavy metals or toxins.

Green Tea Side Note: Tannins can also bind to certain types of iron (apparently vegetable-based iron, not meat-based) and can interfere with certain medications, so if you are iron deficient, or on anti-depressants or blood pressure or heart medications, or have other concerns about green tea speak to your doctor.

Here are a few other articles on the side effects of green tea:

http://www.drweil.com/drw/u/QAA400663/Is-Tea-Bad-For-Blood.html

http://www.livestrong.com/article/408826-does-green-tea-contain-tannins/

http://coffeetea.about.com/od/Coffee-Tea-Health/a/Green-Tea-Side-Effects.htm

http://www.webmd.com/oral-health/features/foods-stain-teeth-feature