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Just Diagnosed


palfour

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palfour Newbie

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


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Guest lorlyn

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

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

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

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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