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

Just Diagnosed

palfour

By palfour
in Meet Up Room

Recommended Posts

palfour Newbie
palfour
Posted

My son was just diagnosed with Celiac. He just turned 14. I've been taking him to an endocrinologist for his height. They did a screening test, which came back positive for Celiac. Then he had an endoscopy, which confirmed it.

He has not seen a nutritionist yet. Our appointment is scheduled in two weeks.

In the meantime, I would like to know if you know of any support groups in Nassau County, NY

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

Celiac.com Sponsor (A8-M):


Guest lorlyn
Guest lorlyn
Posted

Just wanted to say hi and welcome :rolleyes: I live in Alabama so do not know of support goups up there. There seems to be no support groups down here but this forum has been the best support yet. My 10 year old daughter was diagnosed in Nov. 06 and has done really great understanding the situation she is in, but my heart breaks for her to have to deal with this the rest of her life. We are pretty sure my husband has it to just never got him tested, did not want it on his medical records. My daughter dietitian did not know very much about all the things she could not have or touch or be around I have learned most everything I know from reading this site every night for months. Good luck to you and your son it is hard at first but it will get easier over time. If you have any question just ask here and some one will help you

darlindeb25 Collaborator
darlindeb25
Posted

Palfour, I'm not sure where you live in Nassau. I live in Suffolk County and we have a great support group which meets in West Islip. We do have many members from Suffolk County. We meet on Higbie Lane at an old elementary school that is now a community center--the first Tuesday of the month, usually. If you would like more info, just pm me--ok.

You should attend our gluten free vendor fair on the 29th. It's being held at Farmingdale College in Rt. 110. We have over 50 vendors coming and Dr. Peter Green will be there speaking--2 sessions. He is a wonderful speaker.

There is a great book out called, "The Gluten Connection" by Shari Lieberman, after 7 yrs of being gluten free, I still learned things I didn't know. Also, "Gluten Free for Dummies" is a very good book.

Feel free to email me for info about our group or the vendor fair.

joelcontrol Apprentice
joelcontrol
Posted

hOPE FULLY YOU CAN FIND OUT ABOUT THE nassau groups

1 meets at winthrop outreach center 4 times a yeear at 730 pm on a friday

i dont know when the next meeting will be,

The Rock group much smaller mmets at the library in Lynbrook a few times aa year.

i think they are meeting at 7 to 8pm at the lynbroook library on april 30

Archived

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

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


  • Member Statistics

    • Total Members
      126,298
    • Most Online (within 30 mins)
      7,748
    Ramona S
    Newest Member
    Ramona S
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.3k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Raquel2021
      gluten-free and continued upper left side pain after drinking wine

      By Raquel2021 · Posted

      Yes stress can .make the pain worse. That being said it is taking years for my body to heal. I am not able to eat out as 98 % of restaurants do not know how to cook for celiacs.  I only eat out on special occasions. Any time I eat gluten I feel there is a tourch going through my digestive system specifically in the area you have mentioned.  Like where the deudenal is . I am very sensitive to cross contamination so any small amount of gluten makes me sick.
    • trents
      Gluten free diet - are these symptoms normal?

      By trents · Posted

      @Ems10, celiac diagnosis normally involves two steps. The first one is serum antibody testing which you may have already have had done and are waiting on the results. The second step involves and endoscopy (aka, gastroscopy) with biopsy of the small bowel lining. This second step is typically ordered if one or more antibody tests were positive, is a confirmation of the serum antibody testing and is considered the gold standard diagnostic test for celiac disease. Now hear this, you should not be eating gluten free weeks or months in advance of either kind of testing. Prematurely going on a gluten free diet can and will sabotage the results of the endoscopy/biopsy should you get a referral to a GI doc who would want to do that. Eliminating gluten from the diet causes causes inflammation to subside which allows the small bowel ling to heal such that the damage they would be looking for is no longer there.
    • Scott Adams
      Gluten free diet - are these symptoms normal?

      By Scott Adams · Posted

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.  
    • Scott Adams
      Gluten free diet - are these symptoms normal?

      By Scott Adams · Posted

      It might make sense for you to find out if they've run a celiac disease test on you, and if not, consider planning for it.
    • Ems10
      Gluten free diet - are these symptoms normal?

      By Ems10 · Posted

      Thanks for your reply! I’m really not too sure, the doctor just took a few tubes of blood & that’s all I know 🥹
×
×
  • Create New...