Happy Celiac Awareness Month- My Story.

In July of 2005, I was having symptoms most closely related to those of IBS as I had been for the past few years. Over the past 3 years I had seen 3 gastroenterologists and all gave me the same diagnosis “you are a young, healthy female, so it must be IBS”.  On the 4^th doctor, I finally said “I’m getting married next month; you need to do every test you can think of and find out what’s wrong with me!”  After the upper endoscopy that was checking to see if I had an ulcer (negative)- I was finally diagnosed with Celiac Disease.  Being that my wedding was weeks away, my cake was picked out, my menu set, and my honeymoon booked.  A few weeks before one of the major events in your life is not when you want to find out that everything you’ve been eating your entire life now has to change.  But for me it did.  I gave my husband an “out” and told him I would understand if he wanted to cancel the wedding- after all, this was going to be a major life adjustment for him as well- but he said we’d figure it out together.  Which we did.  He read the labels with me, tried the horrible gluten free products that were out at the time (2005), and he humored me when on our honeymoon I took him off to remote parts of Rome, London and Paris on search of a place that I heard of on the internet that offered a gluten free meal.  My husband was with me every step of the way.   Thank gosh foods have gotten much better since, restaurants are easier to find and the breads more closely resemble the breads I remember.  Now when my husband eats with me, he eats just as much of the gluten free food as I do, and will sometimes even finish off something that I then have to yell at him about (HELLO?! You can go to any store and get any chocolate chip cookie- hands off my Udi’s  Soft and Chewy Chocolate Chip Cookies!).  But through all of this my main goal has been to help spread awareness so that others going through this will have an easier time than I did in 2005 and that through awareness, education, support and vocalization we will help to educate others.  There has been an amazing jump in the awareness and availability in the “gluten free world” in these past 8 years I can only imagine what it will be like in the next 8.   

Since May is Celiac Awareness Month, Udi’s has taken on the charge of helping to raise awareness of Celiac Disease to hopefully help others who may be suffering with it.  By discussing the signs, symptoms and treatment options (100% gluten free diet for life!), we can help others.  No 2 people that I talk to with Celiac Disease have the exact same symptoms, which makes it even more important for those of us with Celiac Disease to help spread the word so that everyone (including the medical professionals) will realize that with Celiac Disease, there is no “one size fits all” in how it manifests.

Udi’s Gluten Free has really changed the landscape of the gluten-free product world.  Their breads were among the first to be “fluffy” and able to be eaten without being toasted!  I remember my first time eating a piece of Udi’s Gluten Free bread- that had thawed because it was in my car while I was at a HS football game- I came back to the car hungry, and grabbed a piece of this “new” bread I found and ate it plain, and right out of the bag- and it was AMAZING!  From that day forward I was a Udi’s fan.  Now I love all of their products, from their many varieties of Granola, breads, muffins and  the yummy cookies (even my most discerning gluten-eating friend ate one of the soft chocolate chip cookies the other day and said “WOW, this is a good cookie!” – she didn’t even know it was gluten free!).  Udi’s sent me an AWESOME box of Udi’s and Glutino samples of some of their products- it was an amazing array of what they have to offer.  Among them I received Udi’s hamburger and hotdog buns, Udi’s Granola, Glutino Pretzels, and Glutino’s new toaster pastries!  I was thrilled to receive this box to help me celebrate Celiac Awareness Month in style!

For more on what Udi's is doing to help raise awareness- click here: http://udisglutenfree.com/2012/10/04/celiac-awareness-month-a-challenge-for-you/

Happy Celiac Disease Awareness Month!

-Sue

The Kicking 4 Celiac Foundation 5K Run/Walk- Saturday, June 8, 2013!

Saturday June 8th, 2013, join the Kicking 4 Celiac Foundation as they host a 5K Run/Walk at Theodore Roosevelt Park in Oyster Bay, NY.

 

The day of the event, registration will begin at 8am, with the run/walk starting at 9am, and will include live music, giveaways, and gluten-free goodies for all to enjoy. Guests will enjoy foods from vendors such as Bare Naked Bakery, GoPicnic, KIND Bars, Kinnikinnick, Popcorners, Schar, SoyJoy,Strictly Gluten Free, and Udi’s just to name a few!

 

Online registration for the event is still OPEN, and participants can register HERE! Registration is $30 per person before the event, and $35 the day of the event. All registrants will receive a free event t-shirt with their registration! Participants can join as individuals, start teams, or join teams, and can even have people donate to support their efforts on this fun filled day at the beach!

 

In just their 2nd year of operation, the Kicking 4 Celiac Foundation has enjoyed raising Celiac Disease awareness and education throughout the country. Their fundraising events help raise funds for the foundation and its three distinct programs which include their National Scholarship Program,  Cleats 4 Kids program, and Student Ambassador program.  Support for this event and the Kicking 4 Celiac Foundation will help each of these programs to flourish in the coming years!

 

For any questions about this event, please e-mail info@kicking4celiac.org  or visit http://www.kicking4celiac.org/ 

 

The Kicking 4 Celiac Foundation is an I.R.S. recognized 501(c)3 organization.

Celiac Disease Awareness Day at Citi Field- Sunday, April 28, 2013!

The Celiac Disease Awareness Day at Citi Field will be held this year on Sunday, April 28th!  This is a great day to go see a Mets game, as well as eat gluten-free snacks from the concession stand, meet others with celiac disease and help raise money for the Celiac Disease Center at Columbia University!  I love this day!  I missed it last year because I had just had my baby boy- and didn't think it would be approipate to bring a few week old to the game! (lol) but am looking forward to going this year!    It does conflict with the GIG Long Island Gluten-Free Vendor Fair & Fundrsiser, which is that weekend- but you can go to the Vendor Fair on Saturday, if you're planning on going to the game on Sunday!  (If you live out in Suffolk, you could even to the Vendor Fair when it opens at 11 on Sunday, stay for a little bit, make your rounds, and then drive in for the game at 1pm!- although then you would miss the pre-game festivities at Citi Field which begin at 11:40, but if you can not make it to the Vendor Fair the day before, at least you have options!- Don't miss the Vendor Fair!)
-Sue

Here's the Info for Citi Field:

Celiac Disease Awareness Day at Citi Field

NY Mets vs. Phillies

Sunday, April 28, 2013, 1:10pm.

· Come early and enjoy a private pre-game event in the Bullpen Plaza. Pre-game festivities will begin at 11:40 am when the gates open! SNY's Kevin Burkhardt will be in attendance along with Mr. Met and current Mets players!

· Enjoy expanded gluten-free options in concessions adjacent to your seats.

· Sit together with family, friends, and fellow supporters in reserved seating (with this offer in advance of the game) which includes access to the exclusive Caesars Club.

· The New York Mets will donate a portion of each ticket sold, through R.O.C.K. Long Island to the Celiac Disease Center at Columbia University. The first 500 guests purchasing tickets in advance will receive a limited edition celiac disease awareness bracelet.

To purchase tickets online www.mets.com/celiac

GIG of Long Island Gluten-Free Vendor Fair and Fundraiser- April 27-28, 2013!

I’m SO excited for this year’s GIG of Long Island Gluten-Free Vendor Fair and Fundraiser!

This year the fair will be held on April 27^th and 28^th- same location- the IEBW in Hauppauge (see details below).  Last year I attended the fair for about an hour because it was ON my delivery due date!  I was determined to at least make it to the event as a consumer because I knew I would not be able to volunteer.  I walked around (ok, I waddled around) and was able to catch up with many friends and vendors that I had not seen in a while which was great! I took home a bunch of samples, purchased a bunch of new products, as well as some of my favorites.  It's great to have all of my shopping needs in one place! 

Admission to the fair is $10, but if you attend on Saturday, you will receive a $5 off coupon to return Sunday.  Now, why would you want to attend for two days?  Because that is where you will get the most samples!  The first day, you should go, so you can see all the new products, get the samples before the “in demand” ones run out, then return on Sunday at the end of the day, and sometimes the vendors who do not want to lug the samples back with them to the stores will give them out (don’t’ all show up though because then there will be less for me- lol)!  There are also some vendors that only come for one of the days- and you wouldn’t want to miss anyone!  Also, since a lot of restaurants do show up you can basically eat enough samples as lunch for the 2^nd day for your $5 admission charge!

This year I’m sure the event will be just as much of a success as it has been in years past.  You do NOT want to miss it!

GIG of Long Island Gluten-Free Vendor Fair and Fundraiser:

Date: Sat. & Sun. April 27 & 28, 2013

Place: International Brotherhood of Electrical Workers (IBEW) Local 25
370 Vanderbilt Motor Parkway
Hauppauge, NY 11788

Time: Sat.: 11:00am to 4:00pm
           Sun.: 11:00am to 4:00pm

Proceeds will be donated to further Celiac Disease and gluten sensitivity awareness, research and doctor education.

For directions and additional information go to the GIG of Long Island website at www.gigofLI.org or  e-mail: info@gigofli.org

Admission (Cash only)
$10.00 per person (under 16 free)
Everyone on Saturday will receive a $5.00 off coupon for the second day.

Click here to view the Fendor Fair Flyer- GIG of Long Island Vendor Fair Flyer

-Sue

Rudi's Gluten-Free Bakery's new "Soft & Fluffy" bread contest!

I LOVE the new Rudi’s Gluten-Free bread.  It is “soft and fluffy” as it’s claimed to be!  I took a piece out of the freezer, let it thaw and ate it as-is, no toasting needed!    

To celebrate and get the word out of their new formula, Rudi’s Gluten-Free Bakery is running a promotion now through February 8^th, Rudi’s Gluten- Free fans can text “FOUND” to 304-52-RUDIS (78947) for a chance to claim the $1,000 reward for finding Soft & Fluffy.  Fans are also invited to share found photos of Soft & Fluffy on Facebook (the toaster, the freezer, etc) to be entered for weekly prizes like a Garmin GPS, Nikon CoolPix camera, soft and fluffy bathrobes and Rudi’s Gluten-Free T-Shirts.  Participants will receive a $2 off coupon good for any Rudi’s Gluten-Free Bakery product!    There’s a few more days to enter, so don’t miss out!

See Rudi’s Facebook page for details- https://www.facebook.com/rudisglutenfreebakery/app_415650175175071

Good Luck!

-sue

Newly Diagnosed Gluten Free on Long Island

Happy 2013 Everyone!

My new year’s resolution is to get back to posting on here, my facebook, twitter and my new favorite- Pinterest!  I had a busy 2012- I had a baby boy in May and since then needless to say I have no more “free time” to get on the computer to post!  But as baby Ryan gets older and older, I am slowly getting back into the swing of things- balancing work, caring for him, and stuff I need to do around the house!

 
To kick the year off, I figured I would post snippets of a conversation I had with a Dad of a newly diagnosed teenager here on Long Island.  Everything posted here is my opinion on things- I have to remind everyone, I am not a doctor (I don’t even play one on TV unfortunately- Hello Grey’s Anatomy, I’m available!).  For those of you who are newly diagnosed, hopefully this will help you to start navigating the Gluten-Free world here on Long Island, and as always, if you need help or support, please reach out to myself, or the support groups we have here on Long Island (see post below).

 Wishing you all a wonderful happy and healthy gluten-free 2013!

-Sue

PS- did you all hear about the new Gluten-Free muffins and donuts coming to Dunkin Donuts hopefully this summer?!  They’re in test markets in Miami and Boston right now- and it looks like DD did them the correct way- individually wrapped, and certified GF!  WOO HOO.  Contact DD and let them know you appreciate it and we want them here in NY ASAP! ;)

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Support Groups here on Long Island:

- The  Suffolk County Celiacs, now named GIG of LongIsland- is a great support group here on the Island.  Their meetings are in Hauppauge, which depending on where you are in Nassau could be a bit far- but worth a drive! I used to be one of the board members, and it really is a great group, we spend a lot of time giving tips and sharing "new" places to eat safely GF.

- CSA (Celiac Sprue Association)- Long Island.- There is also a support group in Nassau- through the CSA.  It is not as large as the Suffolk Celiacs/ GIG LI and they only meet a few times a year, not monthly as the Suffolk group does.

 

-R.O.C.K. Long Island- If you have a child with Celiaca, you may also want to check out ROCKof Long Island (Raising Our Celiac Kids). They are a great group for your celiac children to be able to meet other children with celiac.

 

-BNTAC (Bare Naked Truth About Celiac)-  Meetings held at Bare Naked Bakery in Bellmore on Saturdays- check their website for schedule and topics.

PLACES to EAT:

A few of my favorite places on Long Island to eat are : Pizza Bistro in Massapequa, Chipotle (numerous locations), Bare Naked Bakery in Bellmore (some items great, others so-so in taste-- weekly dinner menu changes), Mama's in Oakdale (a hike from Nassau, but worth it!! best GF menu out there!), PF Changs, in Westbury, CafeForrmaggio in Westbury, Papa Razzi's in Westbury can accommodate a GF diner, and has GF pasta (make sure they cook it in a clean pot/ clean pasta water). FiveGuys and Shake Shack, can accommodate a GF diner (hamburger or hot dog, no bun,- and at Five Guys the fries are also 100% Gluten Free. Shake Shack, there is a cross- contamination issue with their oil as they also cook fried mushrooms with breading in them, so I would avoid the fries there to play it safe.  They also have an ingrediant listing at the register. Zorn's Chicken in Bethpage also has a GF menu (Fries are GF as well!).

 For eating locally, here on Long Island, and in NYC check out:

 My Gluten Free LI map on Google- this lists most of the good places on LI- but again, hasn't been updated in a few months- I'm finally getting back into the swing of things and finally caught up at work so will have time at night/weekends once baby goes to bed to start updating again!)

Gluten Free Fun’s Erin- GlutenFree NYC Map-  Places to eat and shop Gluten Free all over NYC!

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Here was the Q and A from my conversation:

1. If a Restaurant has a GlutenFree Menu, like Outback for example, do you fully trust it?

I totally forgot to include Outback Steakhouse in my “recommendations” above. I love Outback! Most are pretty good about the cross-contamination issue- I’ve gone to Merrick and Westbury. It’s always best to speak to a manager when ordering, and question the server on their knowledge as well, so you know they “get it”. The hardest part about gluten-free becoming a “fad” diet now, is for those of us who medically need it to be strict we have no control if the kitchen understands or just think’s it’s someone who “wants” to eat this way. When new restaurants publish that they now have a “gluten free menu” I always go and speak to a manager and ask them what precautions are they taking to ensure little to no cross- contamination. If I don’t get a good response to my questions, I do not eat there. For the most part, corporate chains, like Outback have been trained so I feel comfortable there.

 

2. Do you personally feel pain when you accidently have gluten? How do you respond to a little Gluten? Do you ever simply cheat on eat? (What about for my 14 year old?)

I don’t feel pain- although sometimes I have a stomach ache and I try to figure out if I ate anything questionable in the past few days. I think my symptoms mainly GI symptoms show up about 2-3 days later. I’m not a doctor, so I can’t say medically- but NO! never cheat! When you ingest gluten, it takes about 6 months for the intestines to fully heal again, so the damage is not worth cheating even once. Especially for someone who is still growing, you wouldn’t want to risk any complications down the line (cancers, failure to thrive, infertility, etc) just to eat gluten on purpose. Again, I am not a doctor, so can’t give out medical advice, but I was once told that to stay healthy on a GF diet, you need to be gluten free for 90+% of the time. That 10% is for situations when you are eating out and get glutened by mistake, - things that you cannot plan for. If you knowingly eat gluten, then from the normal day-to-day that you may get glutened by mistake, you are under that 90% and you will get sick from it.

3. Have you been able to eat at Japeneese and Chinesse Restaurants in Long Island? If so which?

I have never eaten at a Japanese restaurant (even before being gluten free- that I can remember)… as for Chinese… Hunan Cottage in Plainview can accommodate GF… I left it off my list of recommendations above because I feel that I sometimes get glutened there. They have a small kitchen (and will tell you so) so the chance of cross-contamination is a bit high… but they are knowledgeable and are as careful as they can, so every once in a while, if I’m desperately craving Chinese food I’ll go - but do sometimes feel that I get sick after (but of course it could be any number of things- so I do not want to blame them).

The best Chinese place is in the city- if you’re ever in NYC- Lili 57, (on 57^th and 7^th) and Lilli and Loo’s on Lexington at 62^nd (sister restaurants). PF Changs also does really well with cross- contamination, I do not get sick when eating there- but you can’t get “sesame chicken or General Tso’s” there.

4. Have you taken your own bread to Restaurants and asked them to clean the grill and have their product put on your bread. My son and I used to go to Hamburger places all the time which he absolutely loves - you mentioned Five Guys Fries but I wonder if I brought a roll that he likes and added their burger from a plate to our roll with their fries if this works?

I have not- sometimes sit down restaurants will not allow this- but places like Five Guys- and I mentioned the Fries- but the burgers and hot dogs are safe as well- just NO bun… they’re pretty good with changing gloves if you tell them it’s an allergy- I wrote a blog post about them when they first opened, and the regional manager called me to ask how to improve (he was not happy with what I wrote)- and since that conversation (a few years ago)- every time I go and ask for gloves to be changed they totally are on-board with that! - I bring it home usually, and then can do my own bun there. But in a place like Five Guys or Shake Shack (if you can stand the huge line! Lol)- it would be super easy to bring your own bun, and just assemble it yourself at your table!

5. What have you done relative to Vacations - my Wife feels like a major part of our life is over with this - surviving with this condition in non Gluten Free places seems to be the real killer.

Vacations are the toughest part about going GF- but very doable. I always say that the main thing that has changed for me with vacations since being diagnosed is that I can’t just “pick up and go somewhere” anymore. Everywhere I go requires a lot of pre-planning on my part- and that is a pain in the butt, but unfortunately is the life of a Celiac. Anywhere I feel like going- I do weeks of research to find out the GF places in the area, restaurants, food supermarkets, bakeries, etc… It’s overwhelming at first, but knowledge and awareness of Gluten Free has grown so much in the past years that it’s really much easier. My favorite vacation spot was Disney World- Every restaurant there can accommodate GF. I had some of my best meals there. You do have to call ahead and make a reservation for the sit-down restaurants (which Disney actually suggests for regular diners anyway)- but when you call to book , mention the Gluten “allergy”. I even had the chef at Cinderella’s castle- theme brunch come out and make me special GF Pancakes and Waffles!!!  He walked with me up and down the buffet line to tell me what was OK and what was not. Totally awesome.

I went to London, Paris, and Rome eating GF in 2005 and 2007.   I went to California- the Los Angeles/Hollywood/Burbank/Santa Monica areas last April (and actually won a car on the Price is Right, I kid you not)- and found TONS of places to eat in those areas! I’ve gone to Washington DC a few times to visit my aunt- and the DCCeliacs have a GREAT resource guide of all the great places to go GF that was awesome. And I ‘ve been on a cruise (Carnival, but I’ve heard good things about almost all cruises now a days)- that was able to accommodate me.

I always see if there is a website for a local support group in the area- they usually have a list of places to eat/hotels, etc that can accommodate- and if not, look for bloggers (such as myself for Long Island) etc that will have local places listed. My friend Erin (Gluten Free Fun) also has a new website- Gluten Free Globtrotter- and she chronicles all the places she visits (I was supposed to write up my trip to LA for her- but totally never got around to it- sorry Erin!!)- she has visited some great places and has tips about where to eat. Traveling is totally possible- it just takes a bit more leg work than previous trip planning.

Follow GlutenFreeLI this weekend at #A4A12 on Twitter, Facebook and Pinterest!

This weekend is the NFCA’s Appetite for Awareness 2012! I am very excited to be attending this event again! I had a wonderful time when I went in 2010 and am really looking forward to going on Sunday.

I will be tweeting and posting live from the event- and created a Pinterest board just for the event!  Follow it here- http://pinterest.com/GlutenFreeLI/nfca-s-appetite-for-awareness-2012-a4a12/

You can find out all the information on #A4A12 by going to their website http://www.celiaccentral.org/a4a/ which has a list of vendors and chef demos. 

Follow me on Sunday, September 23, 2012 from 1-5 p.m at:

TWITTER:

www.Twitter.com/GlutenFreeLI
FACEBOOK:
www.Facebook.com/GlutenFreeLI

PINTEREST:www.Pinterest.com/GlutenFreeLI

-Sue