Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiacs On Long Island,new York

BonLI

By BonLI
in Introduce Yourself / Share Stuff

Recommended Posts

BonLI Newbie
BonLI
Posted

Hi! I'm new to your site. I'm looking for support groups in the NY metro area (preferably Long Island). I'm a recently rediagnosed celiac. I was about three when I first began living on bananas and rice. I have lots of questions. Anyone willing to help?

Thanks, BonLI

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


danikali Enthusiast
danikali
Posted
Hi!  I'm new to your site.  I'm looking for support groups in the NY metro area (preferably Long Island).  I'm a recently rediagnosed celiac.  I was about three when I first began living on bananas and rice.  I have lots of questions.  Anyone willing to help?

Thanks, BonLI

<{POST_SNAPBACK}>

I live in Manhattan, and I don't have any answers for you as I am just learning about this now and not done with the whole testing process yet. But I'm interested to know too, so I'm going to keep an eye on this post!

  • 4 weeks later...
Guest arnelwendy
Guest arnelwendy
Posted

I just came from the one at the west islip senior center ussually on the 1 st tuesday of the month except jan 90 higbie lane west islip

po box 13

kings park ny 11754 0013

very nice meeting

Suezboss Apprentice
Suezboss
Posted
I just came from the one at the west islip senior center ussually on the 1 st tuesday of the month except jan 90 higbie lane west islip

po box 13

kings park ny 11754 0013

very nice meeting

I'm on LI Too and looking for a support group... Is there contact information? I believe I was in contact with someone back in July, but then never heard back from them... ;)

eeyor-fan Contributor
eeyor-fan
Posted
Hi! I'm new to your site. I'm looking for support groups in the NY metro area (preferably Long Island). I'm a recently rediagnosed celiac. I was about three when I first began living on bananas and rice. I have lots of questions. Anyone willing to help?

Thanks, BonLI

I'm just over the bridge from you in NJ. Just over the Arthur Kill. I know of a support group in East Brunswick, but I just stick with online groups...easier than being stuck in traffic, and made some great friends this way.

Hugs

Bridget

jkmunchkin Rising Star
jkmunchkin
Posted

I am in Westchester. I don't know of any groups in LI. I mainly stick to online but have found the Westchester Celiac Group holds a lot of events and may start to get involved with them. There is a meeting at Whole Foods tonight that I want to attend.

  • 4 months later...
fanny Apprentice
fanny
Posted

Hi, I'm from Queens NY and also new. Looking for support group in the tri state area or on line.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 1 month later...
laurieb119 Rookie
laurieb119
Posted
Hi! I'm new to your site. I'm looking for support groups in the NY metro area (preferably Long Island). I'm a recently rediagnosed celiac. I was about three when I first began living on bananas and rice. I have lots of questions. Anyone willing to help?

Thanks, BonLI

HI,

JUST THOUGHT I WOULD OFFER A SUGGESTION. IF YOU GO TO MEETUPS, ON CELIAC. YOU WILL SEE A GROUP. I DO NOT KNOW THE ACTUAL WEBSITE. BUT I CAN FOWARD YOU AN EMAIL FROM THEM IF YOU WOULD LIKE. I HAVE NOT YET BEEN, B UT THEIR MEETINGS ARE MONTHLY AT DIFF RESTAURANTS. AND IT LOOKS LIKE IT MUST BE FUN.

ANYWAYS LET ME KNOW IF YOU NEED MORE INFO. IN ANY CASE I WOULD LOVE TO BE IN TOUCH WITH MORE CELIACS AS WELL. I FEEL LIKE A LONER, NOONE IN MY FAMILY BUT MYSELF, AND IT IS SO REPETITIVE TELLING PEOPLE WHAT CELIAC IS, AS I AM SURE YOU CAN RELATE.

BE WELL, LAURIE

darlindeb25 Collaborator
darlindeb25
Posted

I am a member of the Suffolk County Celiac group--this is one of the coordinators of the group-- For More Information- Michael Thorn, Event Coordinator (631) 395-5071 or email pepi0912@aol.com for more information--I would put "celiac info please" in the subject line. The group does meet on Higbie Lane in West Islip--if I can be of any help, email me at darlindeb25@aol.com --------Deb

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,088
    • Most Online (within 30 mins)
      7,748
    Miss Pam
    Newest Member
    Miss Pam
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • jeffpine
      Should I be screened for celiac disease?

      By jeffpine · Posted

      WOW WOW WOW, your site did it for me: like this, i saw the ads for GliadinX and followed the product. There were several knockoffs. my engineer friend seperated them and found one at the local CVS at a bargain price. So yesterday I tried it. Twice. Lunch and dinner. works fine. Much obliged, 
    • Jmartes71
      Reportable Disease

      By Jmartes71 · Posted

      I am actively dealing with a ray of issues, my skin, eyes and digestive even though not eating wheat.Menopuase has activated so much right now, considering its getting worse with my health. I have learned so much thanks to this website.I wasn't properly told of my celiac disease which was confirmed by colonoscopy and endoscopy in 1994 the same year I gave birth to my first son, my tolerance level was horrible. After being diagnosed and staying away from wheat continued problems. My chiropractor at the time in 2007 had my blood work sent off and turns out I have more food allergies. I told my primary of my celiac disease in 2000 and continued to see that doctor up until May if this year 2025 considering my celiac disease was ignored, disregarded and what Im currently going through and been through. I assumed my celiac disease was " registered " at the time in 1994 just as pregnancy and other ailments are reported. I was shocked to learn that its not a mandated reportable disease not documented by the state from hospitals which I for one think it should be considering all the medical gaslighting im dealing with which is causing depression. Im told not worry about other, well I am and its NOT right.It needs to be documented so others don't suffer and go through this nightmare. Im seriously ready to go down to the mayors office and make some noise. Thoughts?
    • Wheatwacked
      Recurring flu like symptoms after being precribed immune system stimulating drug

      By Wheatwacked · Posted

      With all the bloodwork, have they checked your vitamin D?  What is it?  Celiac Disease causes malabsorption, so vitamin deficiencies are common.  Doctors rarely mention this. B1 Gastrointestinal beriberi, a severe thiamine deficiency, is characterized by symptoms including anorexia (loss of appetite), abdominal discomfort and pain, nausea, and vomiting. Other potential symptoms like abdominal fullness, indigestion, and constipation can also occur. These gastrointestinal issues may resist standard treatments, signaling a need to consider thiamine deficiency.  It is commonly believed that thiamine deficiency is not an issue in the western cultures, so rarely address by doctors. Doses of thiamine above 100 mg several times a day will quickly show improvement.  Borderline deficiency will come and go depending on what your eat.  Carbs use it up faster, so for example if you eat a lot of carbs today, tomorrow you may have symptoms.  Thiamine (Benfothiamine is a synthetic fat soluable thiamine) is water soluable, we only store maybe a weeks worth, and there is no upper limit on how much you consume.  Excess is stored or peed away.   For them it isn't a oroblem.  LOL.  They just say some people are like that and see the next patient.  
    • sillyac58
      Recurring flu like symptoms after being precribed immune system stimulating drug

      By sillyac58 · Posted

      I used the cream for 4 days as prescribed 3 years ago. While I cannot be sure it triggered these problems, the timing is very suspicious. Yes, the oats are gluten free, and while I knew some celiacs have a problem with oats, I only just thought to eliminate them.  I just read about corn on this website, which I do eat plenty of. I do eat dairy, and would be so terrible sad to give it up, but..... Thank you for the diary suggestions. I'll start one today. Thanks for responding!
    • trents
      Recurring flu like symptoms after being precribed immune system stimulating drug

      By trents · Posted

      Welcome to the forum, @sillyac58! Are you still using this topical medication for this precancerous spot on your lip? If not, are you saying you used it for a limited time and believe it triggered additional ongoing immune system reactions with unpleasant symptoms? I'm not clear on this. Are the oats you use certified gluten free? You may know this already, but even if they are certified gluten free, the oat protein avenin is similar enough to gluten to cause reactions in some celiacs. The development of other food intolerances is also common in the celiac community. Common offenders in addition to oats are dairy, eggs corn and soy. Dairy and oats are the most common, however. You might do well to keep a food diary and check for patterns.
×
×
  • Create New...