Wednesday, January 30, 2013

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!


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! ;)

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.


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!


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 57th and 7th) and Lilli and Loo’s on Lexington at 62nd (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.

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