Friday, February 5, 2016

Weekly Update February 5 2016

In The News

Photo Credit: Sarah Small / Getty Images 
Some of the biggest studies in medicine involve the microbiome. If you're new to that word, it's the bacteria (or mirco-organisms) that reside in an environment. Usually in the world of Celiac Disease, we talk about the microbiome of the intestinal tract. Research this week has us looking at the flora and fauna of the vaginal cavity.
A small (four patient) study was done on newly born infants whom were delivered via Cesarean section. Infants not born vaginally do not pick up the "good bacteria" from the vaginal cavity that supports their immune systems. Doctors pondered if it would be possible to swab these infants, post-birth, with their mother's vaginal secretions.
I know, it sounds weird. But it's the comment below of researcher Maria Dominguez- Bello that's garnering the attention of the Celiac Disease community.

"We think that the epidemic increase in asthma, allergies, Type 1 diabetes, Celiac disease, obesity are related to disturbances in the microbiome."

Is it possible that swabbing kids born via C-section can prevent the development of Celiac Disease? Further studies will need to take place to see if this technique can add to newborns health, as well as future health. More on this study can be found at NPR and the website Science and Sensibilty. And a good reminder from doctors and professionals - Don't try this at home.

In the Mail

Photo Credit: Margaret Clegg

As we venture into 2016, I've created a new focus in my blogging. Not only am I doing a recap of the week, but I will be working with companies to highlight Michigan products, restaurants and bakeries. One of the first such companies is Thai Feast. Look for a featured review and giveaway in the coming weeks!

In the Kitchen

Tuna pasta salad, Shell pasta with ricotta and spinach, and homemade shells and cheese with sausage and peas

Confession: I'm a gluten-free hoarder. When there are products on sale or clearance, I grab them and stash them in my pantry in the basement. I can't tell you for sure how long I've had this Meijer shell pasta. Possibly almost a year. It's so delicious I wish I would have used it sooner!
It's made entirely of corn, which may be better for us. Recent research has shown that rice-based products are higher in inorganic arsenic, which is a cancer-causing carcinogen. Lundberg Family Farms is one United States company that has been shown to have low levels of inorganic arsenic.
What's your favorite pasta dish to make?

In My Opinion

Photo Credit:

Celiac Disease is an autoimmune disease which needs to be taken seriously. It is estimated that at least 70% of those with Celiac Disease are undiagnosed. What have a lot of people to reach & teach.
On social media there are always stories of of family members resistant to be tested, They will say "I have no symptoms, I'm not like you, etc." Some can be flat out angry when we suggest it. 

Sometimes I wonder if our attitude may have something to do with it. Please don't get me wrong- this disease can be difficult and it can play an emotional toll on you. But if our posts about our disease are always about how hard it is, how bloated our belly is, or how mad you are that you can't have "regular" pizza, I wonder if people don't want to get tested because they think it's too hard. 

I could be way off base. Maybe our attitude has nothing to do with diagnosing members others. But it has made me question myself and how I discuss and represent this disease. It makes me question what I put on social media and say in the presence of others. There are so many blessings I have due to my disease. I have made friends that are so dear I can't imagine not knowing them. I've met companies with great stories that I believe will change the world. I've been the person who has gone shopping with the newly diagnosed patient, when they're overwhelmed. I've also been the person to persist in emailing a company to remove a product that can be dangerous to our health. 

In the words of Shirley Braden, "Therefore, many gluten-free folks join in on the chorus of how hard living gluten free is, usually before they’ve given gluten-free living its fair shake. They don’t move on to focusing on all the fabulous foods one can eat if gluten free. That keeps them from eventually reaching the “new,” final stage of Embracement.

This disease isn't easy. It takes an emotional and physical toll. 
But we can stand together and make health possible for so many more. 

So what's your attitude about this disease? Take Beyond Celiac's quiz on attitude this month! 

Friday, January 29, 2016

Weekly Update January 29th 2016

In the News
BL-7010 receives designation as Class IIb medical device

The European Union has approved Bl-7010 as for further testing as a Class IIb medical device. The EU has four classes of medical devices, ranked from least rick to greatest risk. This polymer, defined as a large molecule with repeated small units, is ranked just under a Class III device,which poses the greatest risk. This medical device is meant to prevent damage to the gut when gluten is ingested.
This intriguing polymer "has an affinity" for gliadin when it is consumed.  This drug "masks" the proteins from being broken down and triggering an autoimmune reaction. This, theoretically, would prevent damage to the intestinal wall when gluten is ingested.
This drug needs to go through further testing before finally approved for sale. The "medical pathway" would lead to a prescription drug. Bioline-Rx is also seeking to get the drug approved as a supplement, to reach those with Non-Celiac Gluten Sensitivity. Further reasoning to attempt to use this as a supplement includes  In addition, Dr. Savitsky adds "the time to market is significantly shorter for food supplements compared to prescription drugs or devices,” 

In the Mail 
While stores are getting better at providing gluten-free options locally, sometimes a gal still needs to order her supplies online. Birkett Mills  is the only organic certified gluten-free buckwheat flour on the market. While buckwheat is a naturally gluten-free grain, processing can lead to the possibility of cross-contact and high PPM levels. While most products labeled "gluten-free" tend to be found safe through independent testing by Gluten-Free Watchdog, we need to be wary of products without a gluten-free claim.
For those of you who are newly diagnosed, please know that despite its name, buckwheat doesn't contain wheat. It's actually a member of the rhubarb family It is high in protein, fiber and minerals.

In the Kitchen

I loved my husband's grandfather. He was a tall man with a strong presence. He was a teacher in a one-room schoolhouse, a principal in a public school, and an college instructor. He always clearly spoke his mind. But through it all he always had a heart of gold.

When we were first married and he better understood Celiac Disease and my diet, he attempted to accommodate the best that he could. One day he surprised me with a loaf of buckwheat bread. He had researched recipes, played around in the kitchen, and delivered to me what I remembered the best tasting loaf of bread I've ever eaten. I think it was because it was made with his love and concern.

Years later, I've now attempted to make it on its own. I have his hand-written note with the recipe, along with his kind words and sense of humor. I was always amazed at his beautiful penmanship. On the back it says if I have "any questions" I can "call the Expert" Sadly, Papa Earle has been gone for over 5 years, so I can't call. He ended the note -  "Love G & G Clegg." There was never a doubt. :)

It doesn't taste as good as I remember, but I'm also not sure that I didn't mess a few things up along the way. I'll definitely be playing with it again, because it works great as sandwich rounds for my husband's lunch or as a hearty bun for a burger. My husband enjoyed it with Sunbutter & grape jelly.

In My Opinion

Having Celiac Disease can be stressful. It can damage us physically and wreck us emotionally. 
It can be scary. When we feel ill it can leave us desperate for answers. Sometimes our fears and anxieties can drive us to look at and find any kind of answers so we will feel better. 

I've heard the term "gluten cross-reaction" thrown around the internet in the past year. I never paid much attention to it until now. As a Celiac Disease advocate and support group leader, I want to make sure I am passing on the most reliable, truthful information to my followers and members. For background, the list of "19 cross-reactive foods" was published by Cyrex labs. (Buckwheat is listed.)

I did a Google search and found lots of blog posts and websites that I'm not familiar with. Therefore, I went to the website of University of Chicago's Celiac Disease Center, to inquire on their FAQ tab. Here is what their site says -

"There is not yet reliable data about cross-reactivity. As for the alleged possibility that many gluten-free foods or drinks (such as coffee, milk, orange juice, etc.) would trigger symptoms in celiac individuals due to hidden antigens mimicking gluten or cross-reacting with anti-gluten antibodies, it must be clearly stated that this is all false information, devoid of any scientific basis, and must be rejected as untrue." 

As I've said previously, I trust this center implicitly, and have met Dr. Guandalini in person.

I shared this in a public forum and was immediately told how wrong I was. So, like any good researcher, I inquired of other resources. I have a very good friend who attended the International Celiac Disease Symposium in 2013. This is the biggest conference on our disease in the world, with researchers from almost every continent. I asked her, privately, if this issue was addressed at the conference she attended. She very quickly told me that it was discussed and that there is no science to prove it. You can read more about it in her recap, here.

So, I looked further. I wondered if there were any other voices out there also saying that this list of 19 foods that cross-react is not scientifically valid. I came across this article online, admittedly on a blog. The interesting part of this blog is that it shares some of the actual research that Cyrex labs did. Interestingly enough, one of the authors of the paper (and research), Aristo Vojdani, made the following comment on the Paleo Movement blog

"As you actually point out in your blog, nowhere in my actual article do I ever actually claim that foods other than dairy, yeast, corn, oats, millet and rice were positively found to be cross-reactive with alpha-gliadin 33-mer. And to my knowledge, neither has Cyrex. In fact, I just recently applied the same monoclonal and polyclonal antibodies against alpha-gliadin 33-mer to an additional 150 different food antigens, and I can tell you that we found no additional cross-reactivities." 

I realize that this is a sticky, tricky issue. I realize that all of us are different, our bodies react differently, and we are all at different stages of health and healing.(It is possible to have allergies and intolerances to other foods, on top of Celiac Disease!)  I might even lose a few followers from what I have written. But I always want to make sure that I am a voice of truth and reason, as well as open to learning from others. (In a desire to post opposing view points, I would share this long but thorough and well-researched blog post by Adventures of a Gluten Free Mom. ) 

One thing doesn't change though. We are a community. And we won't get the rest of society to take us and our disease seriously if we are tearing each other down. If we want to be listened to as a educated persons, we need to make sure we educate ourselves with valid and thorough research, and not just believe everything we see on a blog, even this one. 

Monday, January 25, 2016

University of Michigan: Food Allergy Safe Haven

When Brianna Wolin started University of Michigan in 2012,  being a college freshman was the least of her concerns. As a student with Celiac Disease, Type 1 Diabetes and food allergies, eating in a dining hall would pose big challenges. She was told that they would have difficulty meeting her dietary needs, and the university suggested she live off campus.

Photo courtesy of Michigan Photography, Austin Thomason

Fast forward to 2016. This Ann Arbor campus has started a new partnership with the Food Allergy Research and Education organization. FARE is the "leading national organization working on behalf of 15 million Americans with food allergy" issues. University of Michigan was selected as one of only 10 schools in the country to start a pilot program addressing food safety issues in dining halls and campuses. These universities and colleges will be collaborating and helping to define the best practices for all campuses, hopefully changing the future of dining for students with food allergies across the country. *

Lindsey Haas, dietitian for U of M dining services, gave me a tour of the South Quad dining hall. Walking through the cafeteria felt like walking through a fine dining restaurant. This is the intended impression, as the hall is set up with 14 "micro" restaurants, allowing students to choose from burgers and fries to middle-eastern fare and more. U of M hires classically trained chefs, all certified by the American Culinary Federation, to create their menus and oversee the cooking staff.

Photo courtesy of Margaret Clegg
While the decor is astounding, it is the food safety steps they've taken that are even more impressive. Each food station is self-sufficient and most food is made to order, allowing students with food allergies to personalize their meal. All prepared dishes use icons for vegan, vegetarian, MHealthy, GF and Halal, when appropriate.

Photo courtesy of Michigan Photography, Austin Thomason

The food station I was most impressed with at South Quad was the dedicated gluten-free room.(Bursley hall also has a dedicated room.) This separate locked-down room is stocked with gluten-free and other free-from foods. Students with Celiac Disease and other food allergy & sensitivity needs are given special access to this room through their MCard (student ID).  Before students are given permission for the room, they must undergo online training to reinforce steps in preventing cross-contact. The room is stocked with its own set of plates, silverware & cups, its own dishwasher, and even freshly prepared foods.

Photo courtesy of Michigan Photography, Austin Thomason
Safe gluten-free options go beyond the dedicated room. Students can take a crust from the room to the 24 Carrots station. There they will make it in a separate pan with separate toppings. This allows the pizza to be assembled and cooked in a controlled way. Students can also take bread and buns from the room and alert staff at the Wildfire station that they need a burger in a dedicated pan and separate area. All dining halls have gluten-free pasta and some sort of dedicated space where gluten-free options are available.

Their food-allergy preparedness goes beyond the kitchen as well. U of M dining has a database of over 10,000 recipes. Each recipe in this database is flagged with allergens as well as vegetarian and halal designations. Access to the food allergy status of foods is provided in two ways. The daily menu lists the foods served that day, along with "GF" designations, for every dining hall. The "My Nutrition" website allows students to use filters to search for safe menu items, as well as keep track of calories. Filters can be applied for the 8 most common allergens as well as pork, oats, and sesame. Filters are also available for gluten-free, halal, "Mhealthy", spicy, vegan and vegetarian. MyNutrition  displays all ingredients for every single thing found in the dining hall.

Photo courtesy of Michigan Photography, Austin Thomason

What convinces a major school like the University of Michigan to get involved with such an in-depth program? Jim Baker, the new CEO of FARE, was an allergist through U of M and suggested they participate. University of Michigan is taking their allergy awareness one step further. They are one of more than two dozen locations around the country that serves as a FARE Clinical Network Center of Excellence. These centers will focus on research, create guidelines for patient treatment, and collaborate in a nationwide registry for the use of food allergy patients.
For those living with Celiac Disease, doctors at University of Michigan hospital are also hoping to start the first Celiac Disease Center in the state of Michigan.

Photo courtesy of Michigan Photography, Austin Thomason

So, as a parent what are your biggest concerns about sending your child away to college? As a student, what are the issues that you've faced or are concerned about facing? If you could tell the dining hall services at your local university one thing that would make living with Celiac Disease and/or food allergies easier, what would it be?

*(While Celiac Disease is not technically a food allergy, the work that FARE does in training and education greatly impacts the welfare of those needing to follow a gluten-free diet.)

Friday, January 22, 2016

Weekly Update January 22 2016

In the News
Zonulin research
Up until now, there has been no test for Non-Celiac Gluten Sensitivity. With new research released this week, that may change. Zonulin is a protein that "regulates" the junction in the intestinal wall. A researcher discovered that the levels of zonulin in a patient with NCGS were as high as someone with Celiac Disease. Those with NCGS had zonulin levels almost 4.5 times higher than that of a healthy patient, and only .003 less than those with Celiac Disease. Hopefully the detection of these levels may help in diagnosis and treatment for those with Celiac Disease, NCGS, IBS and other diseases affected by "leaky gut." Dr Fasano is working on a drug called "larazotide acetate" that will hopefully prevent gut permeability. While this will help with the issue of leaky gut, this is not a cure for Celiac Disease itself. To learn more, click on the link above. 

In the Kitchen
One of the things I missed most after being diagnosed was Sweet and Sour Chicken. Due to soy sauce, many things are off limits at a Chinese restaurant. With the added issue of breaded chicken, Sweet and Sour Chicken is definitely off limits.

I found the easiest and most delicious Sweet and Sour Chicken recipe on the Simply Recipes website. The recipe is written by Jaden Hair, "an award-winning food blogger" and television chef. This dish is so simple it can easily be on your dinner table every week. With a thinner sauce and lightly coated chicken, it's lighter in calories as well. Find this recipe and more on the Simply Recipes site.

Hot and saucy. Just like me!

In the Mail
So as you've noticed I've been mentioning all of the great things that I won during the GIG Twitter Party back at the beginning of December. My third and final gift was a case of Beanfield's Bean & Rice Chips!

You can't have any, because these are "Not-cho" chips! Ha ha! 

This box came stuffed full with 12 bags of their chips in assorted flavors. With flavors that range from sea salt to nacho to barbecue, there is certain to be a flavor that you'll enjoy. These gluten-free, nut-free, corn-free, non-gmo vegan chips list beans as their #1 ingredient. Each serving has 6 grams of fiber and 5 grams of protein and 36% less fat than regular tortilla chips.
Besides loving the taste, I love that this United States company is also a B corporation. B corporations are companies dedicated to not only making quality products, but also improving the world around them. You can find out more about companies like these by clicking here.

I used the Sea Salt chips to make Tortilla Encrusted Cod. Recipe needs a little work....
In My Opinion
To Biopsy or Not to Biopsy?

I'm a rule follower. I check off lists, I color inside the lines, and balance my checkbook to the penny.
I'm also not a doctor, a nutritionist, or a nurse. Therefore, there are certain doctors whose word is law to me. (Most people want to meet famous actors - I want to meet highly respected gastroenterologists.)  Because I'm not a medical professional, I base what I tell my support group members on current medical advice.

Up until this date, an intestinal biopsy is the "gold standard" in diagnosis. With my family history, my gastro didn't even bother with a blood test - he immediately scheduled me for biopsy to see the extent of the damage. It was pretty bad. It's been over a decade and I've moved and going to a new gastro. He's doing another endoscopy, and I'm okay with that. Honestly, it's the best sleep I've ever had.

I belong to an online group for those with Celiac Disease. Some of the people are self-diagnosed, some diagnosed only by blood test, and some with blood test and biopsy. We're a mixed bunch, and there are lots of opinions on practically every issue.

I've been staunch "all must get a biopsy" supporter since I was diagnosed over a decade ago. But after listening to the stories of some, I'm starting to soften a bit. Some don't have insurance, some were wrongly told to go on a gluten-free diet first, some were pregnant, and some simply don't feel it's necessary. My softening is also due to the new ESPGHAN guidelines being used in Europe, which outlines the parameters for diagnosing without biopsy. Dr. Guandalini has given his approval of these guidelines. (Met him in person. One more "star" checked off my bucket list!)

A day without biopsy may be coming soon.  But there are a few things that will never change. DO NOT diagnose yourself. I've heard stories of people misdiagnosing themselves and instead discovering they have intestinal cancer. DO NOT stop eating gluten prior to diagnosis. While one can get the genetic test to rule it out while eating gluten-free, you MUST be eating gluten for blood and biopsy tests to come back accurate. If your doctor tells you to stop eating gluten before the test, FIND A DIFFERENT DOCTOR. Alo make sure they can read read the biopsy results accurately.sYour health is too important to trust to someone who is ignorant. Also make sure the doctor knows how to read your blood tests accurately, I know of a young man misdiagnosed via blood work for years. Instead of having Celiac Disease, he really had Chron's disease.

If you're not getting a biopsy due to fear, please know that it's not that bad. I've had worse pain getting a cavity filled. There is no "prep" with an endoscopy. And if your doctor tries to diagnose you via colonoscopy, FIND A DIFFERENT DOCTOR. They are putting you through too much to get a diagnosis, and they probably aren't doing it correctly. If you doctor refuses to do it, FIND A DIFFERENT DOCTOR! If your insurance doesn't cover it, I can only apologize. The ridiculousness of our health insurance system makes me want to punch someone in the throat sometimes.

Celiac Disease is a serious disease. It's not a fad, it's not a diet you can cheat on, and it is tied to other autoimmune diseases with serious consequences. Too many have suffered for years without a diagnosis. Getting an accurate diagnosis helps the medical community takes us seriously.

Sunday, January 17, 2016

The Crisis in Flint from the Eyes of a Citizen

What's right isn't always popular, and what's popular isn't always right. 

What I'm about to say might not be popular. 

The city of Flint is in crisis. At the moment the lack of clean water is in the news media. You can't miss it. Rachel Maddow is talking about it. It's a topic on Fox News. Even Cher has thrown her thoughts into the public forum. Everyone seems to have an opinion on the matter. So I guess it's okay to share mine.

It's seems impossible to think that a city in the United States, in 2016, can be in such a state. How is it possible that a city that was built for 200,000 people can have an entire water system that is unfit to drink? How is it that a city, once home to the creation of General Motors, has been sending out water to its citizens that is full of lead? I wish the answer was simple, but I'm not sure it is.

In truth, our city has been in crisis for decades. If you were to drive through certain streets, you would see the vacant fields, boarded up business, and charred remains of where houses once stood. Our community members are just as damaged. Their sense of hope has left, walls of distrust built up, broken homes where single mothers are left to pick up the remains of their family.

Our government has been in crisis for a long time too. In 2002, citizens recalled mayor Woodrow Stanley for mismanaging the city and placing it in $40 million dollars worth of debt. It left the city highly divided. (By the way, citizens elected Stanley to the Michigan House of Representatives in 2008.  Let that sink in.) That was the first time the state sent someone in to help, as the city was in dire straits. City council president, Scott Kincaid, said at the time "he did not believe a financial emergency existed." (Kincaid was the president of the city council here until just a year ago.) 

Then started a long history of people sent to help. Darnell Earley became the temporary mayor after Stanley resigned. (Same Darnell Early that was here during the water switch. Same Darnell Early now in charge of Detroit Schools.) But you know what, things got better. We were no longer under state management in 2004 and we had a new, publicly elected mayor, Don Williamson. (Nevermind that Williamson was convicted for several business scams in 1962 and served 3 years in prison before being paroled. What's the worst that could happen?) Skepticism aside, we were out of the red, had balanced budgets, and even received a national budget award in 2006. But somehow by 2009 we were in the hole again, to the tune of $14 million dollars. So of course, the citizens voted to recall Williamson, just like Stanley. Before he could be ousted, he resigned and moved away. And once again the state stepped in to help. 

And so enters the era of the Emergency Manager law. A law passed by the Michigan legislature, our representatives, giving the governor the power to send someone to go in to a city and basically take over. Many decried that it was an attack on democracy. That we lost the right to govern ourselves. 

But from where I stand, we haven't done such a good job at taking our role as citizens seriously. Those governing this city who have been elected by us haven't chosen very wisely. They elected a mayor with a known criminal record. We currently have a city council member that is a convicted murderer. We have another city council member who has been charged with disturbing the peace, during city council meetings, since 2009. Within a month of being elected, he was arrested for drunk driving, while driving the wrong way down the freeway. He has been allowed to keep his council seat. (His original trial found him not guilty on a technicality. He has since been retried and is serving 28 days in jail.) Forty percent of voters turned out for that November 5th, 2013 election.

Why do I say all this? Why do I bring up our past when we are facing such a health crisis now? Why aren't I shouting in anger at the governor for letting this happen to us? Why aren't I demanding the repeal of the emergency manager law? 

Because it's not just that easy. Because our city has over a decade's worth of history of our own mismanagement.Because true change can't happen until we do the soul searching of what got us here. Because I'm tired of the culture of hate and bickering. 

You have no idea what it is like to read a Flint Journal article online, only to see neighbors within the county talk about how our city is good for nothing, should be bombed, and that the last person should simply turn off the lights. You have no idea how hard it is to hear your own neighbors say how desperately they want to leave, when they are the very people you are sacrificing your time and energy for to serve. You have no idea what it is like to go to the funeral of teenage students, because they've killed each other over an argument. You have no idea what it's like to have police not show up after your house has been burglarized, because the city doesn't have money to pay for an adequate police force. You have no idea what it's like to hear AK-47 gunshots for 20 minutes on New Year's Eve, practically coming from your backyard on New Year's Eve, to be told by cops that there's nothing they can do and to just deal with it. 

And that's why this citizen wants to see the mass media go away. The hype to go away. The nasty viral tweets, snarky Facebook memes, and political grandstanding to go away. 

Why? Because you don't know what it's like. Because you don't live here. And because we've been used by pawns by our own local government for far too long. We don't need Michael Moore or Cher or Rachel Maddow or potential presidents to use our city for talking points and ratings. To use fear and hate to feed the divide we already have in this city. 

Because hate can't drive out hate. Only love can do that. Flint needs love. We need hope. Yes we need clean and safe water. But we also need words of healing, prayers of concern, people who are willing to quietly work behind the scenes to do the hard work of real change. 

So if you're not interested in showing love and providing healing, I'm going to kindly asked you to keep your opinions to yourself. Because after years of deception, we need truth, honesty. Not opinion. 

And please forgive me, as I realize I might seem ungrateful for the help we have received. I'm not. There are people volunteering from cities near and far, going out day to day in the cold. Delivering water and filters to shut-ins, those without vehicles to purchase safe water. I am eternally grateful for them.

I'm thankful for those who stand up locally, who fight for truth and demand action. Who see a problem and are working for change, writing senators, scheduling meetings behind the scenes, the countless who are giving of their time to make things happen. Those people are truly changing the world. 

I appreciate the outrage that is moving people to personally help. To be love with skin on. 
Here are 5 ways you can get involved. Thank you Paul Christiansen for this list. 

Pray for the people of Flint. Pray for those in decision-making roles. Pray that the necessary resources will be provided for both for short-term needs and for the long-term infrastructure issues.
There is a lot of hype and sensationalism out there right now over this issue. It is important to get the facts.
Here are three links that can give helpful, accurate information. (The first is info from Virginia Tech who did extensive testing in Flint and helped get the state to take this issue seriously. The second is a site organized by our State Senator with info for residents. The third is an article by Michigan Public Radio, who was on top of this story when no one else believed.)…/how-people-flint-were-stripped-b…
This is a hot topic nationally right now and it's getting alot of publicity, but it will fade from the national consciousness as soon as another big issue arises. The people of Flint will still be here. Hopefully, the coverage does actual good for those hurting and affected.
Manpower is needed and for individuals and groups looking for a way to serve, this is a great option for getting boots on the ground. The mayor, county sheriff, and national guard are coordinating the effort, but they are calling for more help. Flint has close to 100,000 residents, and 40% of Flint's population lives below the poverty line. Water was already a major need before all this happened, but now even more so.
Water donated can be taken to the Food Bank of Eastern Michigan or the Mission of Hope church/shelter. There are others, but those are two of the best. If you aren't in Flint, check your area as several cities are coordinating donation efforts to bring water to Flint.
This allows local organizations to purchase water, filters, and supplies that are needed. The United Way of Genesee County is one great possibility and here's their link to donate. Click here.
"The United Way of Genesee County has set up this fund for the purchase of filters, bottled water, emergency support services and prevention efforts. 100% of the fund is used for these projects and no Administrative Fee is assessed."

Friday, January 15, 2016

Weekly Update January 15 2016

In the News
Celiac Disease and Turner Syndrome-
Researchers in Scandinavia studied the rates of Celiac Disease diagnosis in patients with Turner Syndrome. The research confirmed long held beliefs that women with TS have a higher rate of CeD than the general population. Turner Syndrome is a chromosomal disease that affects 1 in 2,500 women.  These women have only one X chromosome, which impacts their height, reproductive organs and causes other health problems. Women can be diagnosed at birth, in adolescence or in their teens. It has been suggested that women with Turner Syndrome frequently be tested for Celiac Disease throughout their lives.

Studies like this reinforce the severity of our disease, it's association to other disorders, and the need for professional medical follow-up care. We should be having our antibody levels checked at least every other year, have bone density scans to check for osteoporosis, as well as thyroid level tests. Celiac Disease is a serious disease and we deserve to be taken seriously in our health concerns.

In the Kitchen
If you've perused my blog, you know that I'm a big fan of Chebe. They've been around a LONG time, their products are certified gluten free and non-gmo.
On a recent Michigan snow day, I decided to make hamburger buns with their Garlic and Onion mix. Instead of using the recipe on the back of the box, I used one I found on their website. This recipe called for milk and extra eggs. I was surprised how much they rose without yeast, cresting over the top of my 4" mini-springform pans. The outside was crusty while the inside was soft and pliable. I will definitely be making these again. They were quick to make, from box to oven to plate in 40 minutes.

In the Mail

Remember last week how I mentioned that I received GF Jules graham cracker mix from a Twitter party? Well, that wasn't all. I also received a great gift box from Boulder Brands, featuring some of their best goodies. That bag of Glutino animal crackers on top? Yeah, that was the first to be devoured. Definitely the closest to the real thing I've ever tasted. The package of two Udi's pizza crusts were devoured in one night, and the loaf of Millet-Chia bread went pretty quickly. The loaf of their new Rye style bread is hiding out in my freezer so I don't eat it all in one day. What you can't see is the delicious Earth Balance peanut butters inside the bubble wrap brands. Those were a great prize. I swear we spend thousands of dollars on peanut butter alone in this house!.

I'm hoping to host Twitter parties for my followers in the near future. What brands are you most interested in trying? What types of products do you miss most that you'd like to win?

In My Opinion
Photo taken from Omission website
People can be pretty passionate about beer. I think those with Celiac Disease are even more passionate about it because once you're told you can't have gluten, beer is something missed by many. And there's been a pretty passionate debate about Omission beer. Why? Because it's "gluten-removed." Say what?!

These beers have been brewed with barley, a grain that contains gluten. The creators of Omission beer add a chemical to "break down" the gluten through hydrolysis . This hydrolysis method breaks the gluten peptides into small fragments. They do test the finished product, but with a test called mass spectrometry. This is not the standard test that is used to certify products as being gluten free. Up until this point, the  TTB has stated that this beverage cannot be labeled gluten free, because it is made from grains that contain gluten.

To meet TTB standards, a gluten-removed beer must include this on their label or in advertising: “Product fermented from grains containing gluten and processed to remove gluten. The gluten content of this product cannot be verified, and this product may contain gluten.”" Of course, if you never saw their advertisement, and it's not on the label. you might not know this.

That may change soon. The FDA is taking comments from the public about how we feel about fermented and hydrolyzed items that have been treated to break down gluten. They are also taking comments from scientists about the process, as current testing methods make testing for this difficult. You can leave your own comments, by February 16, 2016, on the Regulations.Gov website.

There are many beers on the market made from grains that do not and have never contained gluten-containing grains. In my opinion, I would prefer to drink beverages from companies that have taken the extra time and energy to create a procedure and facility that is totally devoid of gluten. Brands that are most often noted are Bard's, Glutenberg, Ground Breaker Brewing and Ghostfish Brewing. Ground Breaker and Ghostfish both took home top nods at the 2015 Great American Beer Festival, winning the gold, bronze and silver medals between them.  (*Moment of honesty- I'm not a beer drinker, but I enjoy a good crisp cider now and again.)

Until the FDA declares hydrolyzed and fermented items (which include hydrolyzed yeast and malt extracts) truly safe for those with Celiac Disease, I will dissuade my readers from consuming them. I also strongly trust the opinions of Tricia Thompson, whose thoughts on this matter can be read here.

As always, we're all entitled to our own opinions. Please take this opportunity to have your voice heard and leave your comments on the Regulations.Gov website. It is our right to make our health concerns and wishes known.

 I want to hear your opinions too. Leave me a (nice) comment about how you feel on this issue.

Friday, January 8, 2016

Weekly Update: January 8 2016

In the News
Autoimmune Diseases linked to Processed Foods

A recent article published in Autoimmunity Reviews suggests that there may be a link between processed foods and autoimmune diseases. Researchers in Israel and Germany hypothesize that certain food additives can damage the mucous membrane lining the intestines and cause gut permeability, also known as leaky gut. It is suggested that "leaky gut" syndrome may increase the likelihood of developing an autoimmune disease. 
There are 7 food additives that the team looked at, and that they suggest lead to gut permeability are- sugars, salt, emulsifiers, organic solvents, gluten, microbial transglutaminase, and nanoparticles. 

These are very interesting findings. It is my understanding that the testing done was in the lab, and not on human subjects or with human tissue. I would be intrigued to see other scientists perform the same research and hear their findings as well.

In the Kitchen

It's the New Year and we're all resolving to pay attention to our health. Even the USDA has new guidelines saying we should eat more vegetables. So I'm doing my part and turning to an old family favorite. RotKohl.

RoKohl is German for "red cabbage." My husband has an old family recipe, which originally included included pickled peach juice. This peach juice was the leftovers from when the women in the family used to make canned peaches. Since I don't can peaches, I just use apple cider vinegar. I could eat this stuff morning, noon and night. I'm seriously considering eating the leftovers for breakfast in the morning!

4 tbsp butter
1/4 - 1/2 cup chopped onion
1 (2 lb) head red cabbage, shredded
5-6 apples, peeled and sliced thin ( I actually never bother to peel them)
1 1/2 c. water
1/2 c. brown sugar
1/2 c. apple cider vinegar
1 heaping tsp salt

Melt the butter in a large pot and saute the onions, until mostly soft. (2-3 minutes) While that is cooking, slice your apples, thinly and shred your cabbage. Add shredded cabbage and saute for 3-4 minutes, then add apples and remaining ingredients. Simmer on low until all vegetables are soft, at least 20 minutes.

This dish can be enjoyed hot or cold. For a real Michigan twist on it, you might be able to substitute J.K. Scrumpy's organic hard apple cider. (I haven't tried it yet.)

In the Mail
During the holidays I participated in a Twitter Party organized by the Gluten Intolerance Group. If you're unfamiliar with Twitter parties, a group of people agree to log on at the same time, talk about a specific topic, and use a designated hashtag so that everyone can follow in the conversation.

During the conversation, GIG drew winners for a holiday prize package, and they drew my name! One of the gifts I received was a package of GJ Jules graham cracker mix. This mix can easily be transformed into gingerbread for the holidays. Using her mix I made gluten-free gingerbread for the first time, and they were so delicious!

In My Opinion

Third Party Certification-

One of the difficulties of having Celiac Disease is reading labels and investigating how products are produced. To make things easier, various Celiac Disease related groups have created certification programs. These groups include the Gluten Intolerance Group, Celiac Support Association, and Beyond Celiac (formerly NFCA). The National Sanitation Foundation, an international organization, also has their own certification program. These groups have special certification labels, which are intended to highlight the product as safe for those with Celiac Disease. Based on the label, the product is deemed to contain under 20 ppm, or even lower depending on the organization that is doing the certifying. These different logos and their associated standards can be confusing. A survey was even published this week to gauge the public's understanding of these logos and what they mean. To see a side-by-side comparison of each certification program, click this link.

The timing of this survey is almost uncanny. Tricia Thompson runs a site called Gluten Free Watchdog. It was shared this week, via her Facebook page, that a new assortment of LiveGfree granola bars listed "gluten free malt extract."  Knowing that other grains can be malted, Tricia did further research to see if the malt in question was from barley. IT IS FROM BARLEY. Those of us with Celiac Disease know that barley, and therefore malt extract, is not gluten-free. Tricia has since submitted this issue to the FDA for review. (**Note- The LiveGfree line is exclusive to Aldi stores.)

The rub in this situation is that this product carries the National Foundation for Celiac Awareness certification logo. Through Tricia's investigation, it became known that NFCA (now Beyond Celiac) does NOT do their own independent testing of these products, and allows producers to self-designate their product as gluten-free. This is a problem and reinforces our need to always be vigilant in reading labels.

I have been concerned for sometime with the plethora of gluten-free certification logos. (In conversations with others, I know that I am not alone in my concern.) I think it leads to customer confusion and causes competition between organizations that should be working together. While I don't doubt each groups sincere desire to help the Celiac Disease population, I'm concerned that some of these certification programs are led by a desire for monetary gain. I hope to be proved wrong, and I long for the day when we can all agree on a certification standard and one single logo. In my opinion, it would make it safer and easier for us to choose products wisely.

So what's been going on in your gluten-free world this week? What new products have you discovered? What recipes have you been playing with in the kitchen?