neurofibromatosis cafe

A place to talk about NF, have fun and share.

Questions I Can’t Answer, Maybe Someone Has The Answer?

Here is a post from Juliet. I hope we can get a answer for her.

Hello! Great job, keep it up! I have a step-daughter with NF type 1. She also seems to have a few risk factors for Celiac disease (I’m also a nurse). I wanted her tested, but the doctors didn’t order it. Does anyone know if there is an affiliation with NF Type 1 and Celiac? Celiac often goes in conjunction with other inherited disorders such as Diabetes Type 1, autoimmune disorders, autism, seizures in certain parts of the brain, dyslexia, and a few others… I’m trying to raise awareness with doctors and the public. Newer statistics say it may be as high as every one in 80 people. If it is a secondary diagnosis, a gluten free diet often helps control their primary illness. Reggie is an inspiration!

July 7, 2008 - Posted by | neurofibromatosis

5 Comments »

  1. just wanted to say to Juliet I have NF 2 and also have just recently been diagnosed with ciliac and believe me it no fun NO wheat I want bread bad but I dont know if my ciliac is caused by the NF but I guess it could be because I have NF type 2 and just got diagnosed as ciliac

    Comment by Brian | July 7, 2008 | Reply

  2. Brian thank you for your input. I’m sure this will let Juliet will know she is not alone.

    Comment by Reggie Bibbs | July 8, 2008 | Reply

  3. I was not aware of this, I hear or learn something new each day(well, almost) about NF. Hope you continue to come back and join the live chat.
    There are some activities coming up, in September there going to be a family camp for NF and families. If you are interested let us know and Reggie or myself can tell you more. This is a great way to meet others with NF.

    Comment by John | July 8, 2008 | Reply

  4. Hi Everybody

    Comment by Shelley | July 9, 2008 | Reply

  5. Hi Shelley good to see you here. I hope all is well. Come over to chat.

    Comment by Reggie Bibbs | July 9, 2008 | Reply


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