Celiac Disease Research Study is Recruiting Infants

Northeast Ohioans with infants or infant relatives: Please read below about the research being conducted at Harvard Medical School/Mass General Hospital for Children and the Center for Celiac Research and Treatment. If interested or you have questions, please contact the study coordinator directly.

The CDGEMM Study
We are currently recruiting for an incredibly ambitious, one of a kind study that aims to predict and prevent celiac disease. We are currently at 146 infants in the US, with a total of 250 to be recruited! The CDGEMM Study (Celiac Disease Genomic Environmental Microbiome and Metabolomic) is aimed at understanding the role that our genes, gut microbiome, and environmental factors play in the development of celiac disease. Infants in the womb or 6 months or younger who have a first-degree relative (parent or sibling) with celiac disease are eligible to participant in the study, and we are currently recruiting from all over the country.

Please feel free to reach out and ask us any questions that you may have.

Tori Kenyon
Clinical Research Coordinator
Center for Celiac Research and Treatment
Mucosal Immunology and Biology Research Center
Mass General Hospital for Children
Office: (617) 643-4366
Email: vakenyon@partners.org

Are you, your child or spouse diagnosed with celiac disease?
Learn more about the CDGEMM Study at www.CDGEMM.org

News Notes and Things to Know…..1/2018

Mariann writes:

Happy New Year All!!

I hope your holidays were filled with all the things that you love about celebrating with friends and family!

Here’s some things that are happening in the world of CD and gluten-free just to keep us all on our toes as we venture into 2018!!

In the following article you will find the final paragraph reads…..

“Avoiding whole grains because you’ve heard gluten is bad is like avoiding whole fruits because you’ve heard fructose is bad,” Dr. Katz said in an interview. A diet without gluten is most often associated with the inclusion of what he calls “ultra-processed, gluten-free junk foods” and the exclusion of highly nutritious whole grains. “Avoiding it systematically produces net harm both to diet and to health.”

I will refrain from expressing my commentary to this piece and let you judge for yourself but it is worth a read because others will read it and you might like to discuss it further!

https://www.nytimes.com/2018/01/12/well/eat/gluten-free-grain-free-diet.html?_r=0

FSR magazine which reports on all things related to the restaurant and food service business just had this article at their website and on f/b.  Share it with any restauranteurs that you communicate with!

https://www.foodnewsfeed.com/fsr/expert-insights/why-handling-gluten-bigger-deal-you-think

 

Meal Options expanding to cover the needs of the gluten-free diner !!

http://www.gffoodservice.org/news_stories/green-chef-announces-gluten-free-authentication/

 

 

And then locally at cleveland.com ………

http://www.cleveland.com/entertainment/index.ssf/2018/01/heres_your_gluten-free_news_ro_1.html

 

And a reminder and an update!!  Last year cleveland.com readers voted on the top 5 restaurants serving g-f diners.

This year we are proud to share that #1, Cafe Avalaun,
now Certified 100 % Gluten Free Food Service by GIG!

http://www.cleveland.com/entertainment/index.ssf/2017/12/here_are_the_top_5_local_glute.html

 

Finally, an explanation for why this disease is slogging in the research world…..

https://www.huffingtonpost.com/entry/celiac-disease-the-underfunded-invisible-deadly_us_5a54ec65e4b0ee59d41c0e2a

Traveling the G-F Road 12/17

Mariann writes.

Friends of mine in Boulder recently messaged me about a new dedicated brewery!   This is so exciting – I needed to share it with you right away –
haven’t gotten there yet but I will get there to check it out in person, soon, I promise.

http://holidailybrewing.com/

801 Brickyard Circle
Golden, CO  80403
303-278-2337

p.s. –  If you get there before me – Share comments:)

News Notes and Things to Know….. 12/2017

Mariann writes:

Holiday Greetings All!!  We hope you are having a wonderful season of preparing for your Holiday Celebrations!   Should you be in need of some gluten-free goodies here are some ideas to move you in the right direction!

At Cafe Avalaun they are hard at work creating yummy treats for our gluten-free needs – and they are a certified and fully dedicated kitchen!!

BUT, by the time this post makes it to your emailbox they will be at the final day of preorders so get moving – you don’t have much time – in fact, the time to make the call is…….TODAY!!

OR,  call Brian and very politely, very nicely, request your goodies reservation!

        https://mail.google.com/mail/u/0/#inbox/1601654cc4ecc8b5

On a serious note!!  Someone called me to suggest I read the following article.  I am sharing this with all of us because it is a serious issue that we need to be very conscious of AND make sure that we are not this behaving like this person described in this letter to Dear Amy!

Dear Amy: I have a friendship of more than 40 years with a delightful woman. We see each other about once a month, often at dinner in a restaurant with mutual friends. About six months ago, “Sandra” announced to us that she had just discovered that she is allergic/intolerant to gluten. This has become a focus of her life and often dominates the conversation. Since that time, every trip to a restaurant includes a very (VERY) long discussion with our waitperson and/or chef regarding each item on the menu and whether it fits into her gluten-free diet. Then the bread basket comes, and Sandra dives in because “it’s just too good to pass up.” Several of us, outside of Sandra’s presence, have commented that not only is the gluten conversation tiresome, but also embarrassing when held in a busy restaurant. Additionally, most people are aware that those who are truly gluten intolerant become very ill when they eat bread, and avoid doing so at all cost. We’d love to talk this out with Sandra, but are afraid she’ll become defensive and angry, although this is not her usual reaction to thoughtful criticism. Any advice? — Like Oprah, I Love Bread

from Mariann:    To be clear!  I am not saying that we should not advocate for ourselves when dining out.  This diet can be so limiting.  This diet can cause us to feel so left out.  This diet can be such a inconvenience.  This diet can be so unfair!  But, this diet is not the problem of our fellow diners and we should not make it theirs.  That is unfair of us.

So, here are some tips to make it more palatable (pun intended) for our own well being and for the well being of our fellow diners and for the well being of the serving and preparing staff!

  1.  Try to not corner the staff during a busy time to talk about the entire menu.  Rather, call ahead or check out the menu, on-line, and prepare yourself with a couple of items you would like.  Ask specifically about the options you have interest in eating.
  2. Do not ask to see the Chef during peak service hours – I’m sorry – that is just rude.  The folks in the kitchen are working hard on a very tight schedule so running out to the floor to talk with you throws everything out of whack! Again, call ahead and speak with the manager or the kitchen staff.  To consider, in order for a kitchen person to make their way to the dining area, it may be necessary for them to change out of their garments just to make that walk to your table.  And then, to change back in order to get back on the line.
  3. Do Not.  Do Not.  Do Not.  Under any circumstances, Do Not, eat the bread just because it looks too good to pass up.  Additionally, do not drink traditional beer just because.  And finally, do not order desserts that are not safe.
  4. Finally, unless you have checked in advance do not bring your own food with you.  There are laws that prevent consumption of outside food and beverages and many owners take that seriously.  Again, call in advance.

A thought…….I have asked, in advance, in some venues if I could bring a fresh – unopened box of chocolates to share at the table at the end of dinner with coffee or after dinner drinks.  Often the restaurant has been fine with that and my companions have happily shared in the tastings.  That being said, make the event one to enjoy with your family, friends, or colleagues!  Because after all Life (can be) Truly Like a Box of Chocolates:)

If baking is one of your ‘front and center’ activities for the season and you are looking at a fun activity to share with family and friends or you want to bring along something to share at an event take a look at the recipes in this post from GFF, gluten-free forever magazine!

https://mail.google.com/mail/u/0/#inbox/160318684577d5a4

 

Finally, we are now fully connected to Gluten Intolerance Group!

GIG is a non-profit support and advocacy group for all things gluten-free!  Check out their page!  You’ll find listings for restaurants – useful for travel times – recipes, activities, coupons, certification standards and news.

If you are so inclined you can make a donation at their page to assist in the efforts of behalf of the community!

And, here is the link to sign up for the Gluten Intolerance Group monthly e-news:)

https://www.gluten.org/e-magazine/

 

Gluten-Free Pumpkin Pies to go…

Kathy’s Creations (Alliance, OH) is now taking gluten-free pumpkin pie orders. I purchased one of her fruit pies recently and it tasted precisely like the wheat flour crusts I remembered savoring many years ago (flaky & delicious!) This gem of a bakery is a little drive from CLE/AKR – but worth the trip! Being able to purchase any item in the entire bakery (which is exclusively gluten-free) was certainly a treat. In addition to enjoying the variety, texture, and taste of the items purchased, prices were extremely reasonable.

Kathy’s carries a wide variety of gluten-free items, including pies, assorted muffin flavors, pizza crusts, various breads & cookies, biscotti, cakes, & cupcakes. I am told her pumpkin pies are delectable but that one must order EARLY. Order your GF pumpkin pie(s) today! (330) 821-8183

Kathy’s Creations
2010 Crestview Ave, Alliance, OH 44601
(330) 821-8183
www.kathyscreationsbakery.com