Jump to content
  • 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

Recommended Posts

BonLI Newbie

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
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

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
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
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

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

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
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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,963
    • Most Online (within 30 mins)
      7,748

    AlissaW
    Newest Member
    AlissaW
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.