Vaccine for Celiac Disease

A vaccine for celiac disease is set to start clinical trials in Victoria, Australia in the next few months.  Nexvax2 is supposed to give those with celiac disease the ability to overcome their autoimmune response to gluten (the protein in wheat, rye and barley). It is thought that it will desensitize them to three peptides in gluten that actually trigger the autoimmune reaction. The US and Europe will also be participating in the larger phase two study which will assess how well it works. Wow, wouldn’t it be great?  I am not sure how long the trials will last or how long it will take to have any answers.

Source: celiac.com

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Confessions of a Menu Hopper; Grotto Pizza!

So, every now and then we get menu mailers sent to our home from our local restaurants. I always study them and drool over stuff that I know I can’t have unless I make it myself. I know it is probably not a good thing to do; actually; it is depressing. I sarcastically refer to this habit as “Menu Hopping”!   Yup folks, there is coupon clipping, bar hopping and for those with food allergies and/or Celiac Disease..there is menu hopping…where we can only look at the pictures. We just do this to ourselves sometimes.

This week we got one of these glossy menus from Grotto Pizza. If you are not familiar with them; this place is legendary. The original  was Joe’s Grotto in Harvey’s Lake, PA. Dominick got his start working there (his brother in law’s place) and my x- husband grew up there. My kids loved Joe’s Grotto. Mike always got the mushroom and green pepper pizza and he will tell you it is not the same here as it is in Harvey’s Lake! Then they expanded to the Delaware Beaches, Ocean City, MD and then to Columbia and Gambrills, MD and there are a bunch in PA.  After drooling, I looked for their Gluten Free (GF) or Allergen Free (AF) offerings. They are offering a gluten free pizza with no promises and no warnings about cross contact. On the back of the tri-fold menu it says:

“** Menu items and prices are subject to change. Warning: some menu items may contain peanut oil, peanuts, shellfish and or milk products…..” .

My thought was; “wow, that is not really saying anything”. I could not help but wonder how safe it might be for a Celiac or person with Food Allergies.  So, I went to their website.  There is nothing other than a spread sheet listing which of the top 8 allergens or gluten are present in each dish. Nothing about cross contact and how they might actually be able to keep the GF pizza GF! Nothing about how they handle allergens.  I was surprised but know I am out of the loop because I am either here at the cafe, deli and bakery or at home. ( I know, I don’t have much of a life outside of here.)

To further inflict misery on myself, I decided to delve further to see how much a person would pay for a pizza that may not really be GF and there is no promise that it will be GF.  To my surprise I found that we are cheaper!

Grotto’s Cheese GF Pizza    9″ Personal (63.58 sq inches)      12″ Regular (113.17 sq inches)

$10.99  (.17 inch)                         $15.99 (.14 inch)

 

ODC Cheese GF Pizza             12″x 9″ Small (108 sq inches)     12″x 16″ Large (192 sq inches)

$16.49    (.15 inch)                       $25.75 (.13 inch)

saving of 1.26 on this pizza         saving $1.13 on this pizza

and you have leftovers!                and you have leftovers!

How fun was this gang? ODC is making it taste better, making it safely and saving you money. What is not to like? I know I won’t say this often in my life; thanks Joe’s Grotto for making me drool and look good at the same time! I think I will try to do this once a month and call it “Monthly Menu Hopping”; what do you think gang?  Also, do any of you do this to yourself?

baby drooling
First I felt like this
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Then I was like this
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Finally I was like this!

 

Food Allergy Programs in 26 Colleges!

So much progress is being made in the areas of public awareness/meal accommodations for those with food allergies and celiac disease. I am amazed when I meet people in our Cafe, Deli and Bakery who have gotten a food allergy diagnosis for their child and just assumed it would never get any easier when it comes to feeding their child.  They just get the diagnosis, eat at home and look no further for support or information.  They often assume that their child will never be able to go away to college. I always try to share with them how to safely advocate for themselves/child and bring them up to date on what is happening in food allergy advocacy.

When dining out I recommend having only one person advocating/talking to the servers or staff. In the case of a child, I suggest that only the child and 1 parent/primary caregiver do the talking because the child has to learn to advocate for themselves and the parent is there to be sure the child is communicating their allergies correctly.  However, well meaning family and friends often chime in and it becomes very confusing. Quite often misinformation is given by friends or other family members who don’t really understand it all.  This creates confusion and is dangerous when trying to deal with life threatening food allergies in a restaurant. I always encourage those with food allergies to carry their epi-pen and a food allergy card. Lastly, I give them information that will help them moving forward. The best place for that information is FARE (Food Allergy Research and Education).

If your child has Celiac or Food Allergies and is heading off to college in the next few years this information is for you because it shows you which colleges are taking Food Allergies seriously enough to put a program in place.  You need this information because there is not a One Dish Cuisine Cafe, Deli and Bakery on every street corner.

Now there are 26 Colleges with Food Allergy Programs in place!

Last year I posted about this. In 2015; FARE (Food Allergy Research and Education) started a pilot program with 12 colleges in order to train them about the severity of food allergies, how to safely accommodate the dietary needs of these students. Also they helped with support groups for the students as well as in housing, dining, health, disability and emergency services too. The good news is that in 2016 they added 14 more colleges.  The complete list is below:

  • College of the Holy Cross (Worcester, Mass.)
  • George Mason University (Fairfax, Va.)
  • King’s College (Wilkes-Barre, Pa.)
  • North Carolina State University
  • Texas A&M University
  • University of Arizona
  • University of Chicago
  • University of Michigan
  • University of Northern Colorado
  • University of Southern California
  • Valparaiso University (Valparaiso, Ind.)
  • Wesleyan University (Middletown, Conn.)

New in 2016:

  • Brown University (Providence, Rhode Island)
  • Colgate University (Hamilton, New York)
  • Michigan State University (East Lansing, Michigan)
  • North Dakota State College of Science (Wahpeton, North Dakota)
  • Purdue University (West Lafayette, Indiana)
  • Skidmore College (Saratoga Springs, New York)
  • Stanford University (Stanford, California)
  • The University of Iowa (Iowa City, Iowa)
  • University of Colorado Colorado Springs (Colorado Springs, Colorado)
  • University of Dayton (Dayton, Ohio)
  • University of Illinois at Urbana-Champaign (Champaign, Illinois)
  • University of New Hampshire (Durham, New Hampshire)
  • University of St. Thomas (St. Paul, Minnesota)
  • Worcester Polytechnic University (Worcester, Massachusetts)

PS: There are quite a few who have put in programs on their own.

I hope this information is helpful and you stay safe out there! For More Information visit FARE’s Website: Click Here

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GF/Food Allergy/Autism Bloggers, How They Help

There is no doubt that, blogging has become huge and it is because all you need is a computer. Anyone can be a blogger..writing about things you are passionate about. Your blog can be all about your family, or child, or job, or hobby, the possibilities are endless.  The best part is that you don’t even need to have followers!

My passions are celiac disease, food allergies and autism. However; I reluctantly moved into the blogging world. For those of you who first started getting my newsletter back in 2010, you know that I put many articles in the newsletter each week. Sometimes it would take me 5 hours to get it all together. My problem was two-fold: I needed to cut back on the content and the newsletter was not archived. This meant that readers would be calling me asking me to email them an old newsletter or article. I had to make it more manageable by having all articles in a central place so my readers could get to new and old information any time.  So, when I had the web-site re-designed, we added a Blog Tab. (I still have not transferred over all articles yet!)

I started reflecting on what GF, Food Allergy  and Autism Bloggers “bring to the table”.  First, they serve as a voice for their communities. These communities offer acceptance, understanding and support 24-7!  You don’t need to wait for the monthly meeting for some support or a sympathetic ear;  you just turn on your computer and you are set. Instant gratification!

This is so important to those with Celiac Disease, Food Allergies and Autism.  Why?  Because if you or a loved one are affected by any of the above, you are subject to scrutiny.  Unfortunately, much of the general public feels that the Gluten Free Diet is just a fad diet, that food allergies are just made up and Autism is just a symptom of a discipline problem that you have with your child.

I can’t tell you how many stories I have of my own about being made fun of, about invalidation and doubt from friends and family.  There are customers who tell me stories of a family member dangling shrimp in front of their child who has a shellfish allergy. The family members and friends who doubt your Celiac Diagnosis and talk behind your back.  The friend or family member who thinks that Autism is made up because “the parent does not want to parent” and hearing “we all did our homework by ourselves growing up…we didn’t need an adult next to us the entire time, he just needs to be disciplined and you need to stop spoiling him and giving into his whims”.  Or we hear, “I know how you feel.”  When they have no idea what you are dealing with.

Well, that is exactly the crap we have to live with folks.  Having bloggers who give a place for sharing and caring in the areas of Celiac Disease, Food Allergies & Autism is so needed and so appreciated.  These bloggers create a community that is so far reaching and inclusive by educating, sharing and giving a voice to those who often have no outlet or support system. Sometimes we just need someone to help us find our sense of humor again.

Why has blogging exploded? Well, sometimes, even our doctors are not a support system…they don’t have the time and in some cases they just don’t have the knowledge; leaving some suffering; un-diagnosed for far too long.  Support groups meet monthly or quarterly and sometimes you just can’t wait that long.  Often, you are in overwhelm and need some support before you explode. You need someone to actually listen to you; not invalidate you. Someone who will actually hear what your are saying; people who are going through the same thing and support you….. via your favorite blogger!

Turn on computer; find favorite blogger and you can be “HEARD” almost immediately! 

Thank you to all of you great bloggers out there. You help keep us sane while dealing with   Gluten-Free Diets, Food Allergies and Autism. Thank you all for being there to catch us when we fall and most importantly educating us and helping us keep our sense of humor .

There are so many great blogs! Here a just a few of my favorites:

GF Blogs: Gluten Dude, Gluten Free Girl, One Dish Cuisine

Food Allergy Blogs: Food Allergy Mama, Allergy Eats (Paul Antico)

Autism Blogs: Autism Daddy, Confessions of an Asperger’s Mom

Click Here to vote for GF Bloggers

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