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Hi all,



I’m wondering if any listserv members have been diagnosed with immune
rebound syndrome after being diagnosed with celiac. We have a new member of
our support group. She was diagnosed with celiac a few months back. She had
not had celiac symptoms other than the severe osteoporosis. When she did not
respond to typical osteoporosis treatment (the bone-building drugs and
calcium/D supplementation), she was finally tested for celiac. After testing
positive, she went gluten free, but has been having major neuropathy-type
issues and just got this IRS diagnosis about 2 weeks ago. Here’s her
description in her own words below. She’s looking for anyone else who has
received that same diagnosis, experienced these symptoms, etc., hoping for
any insight, personal stories of this situation passing quickly, etc.



“The doctor called it immune rebound syndrome and said it could last up to a
year.  When I googled, I only found immune reconstitution syndrome.  When I
asked him if they were the same he told me yes and no.  The immune
reconstitution syndrome is usually with people with HIV.  The immune rebound
syndrome is the same but to a lesser degree and not HIV-related.  He told me
the immune rebound syndrome is a reaction of my immune system caused by the
removal of gluten from my diet.  This reaction is causing my nerves to
"short-circuit".  My hands and feet feel like they've been immersed in ice
cube water.  They get so bad that my fingers and toes feel like they're
going to crack into pieces.  Painful.  The meds take it from an 8 to a
2.  Sometimes
(not all the time thank goodness) the base of my head throbs and pulsates
and my ears will sometimes feel really weird.  Hard to describe.  If I don't
take the meds when this happens, I cannot function.  When I do take the
meds, I feel like I'm in a fog but I don't feel like I have much of a
choice.  I can't function without the meds (Lyrica) and don't function
normally with them.  The neurologist's brother has celiac disease and he,
himself, is gluten-free, as well.”



Thanks so much for your help,

Shirley



Shirley Braden

Not just gf, but gfe!

Leader, King George Gluten Intolerance and Celiac Group

Blog/website: gfe—gluten free easily at http://glutenfreeeasily.com

Email: [log in to unmask]

Visit the Celiac Web Page at Http://www.enabling.org/ia/celiac/index.html
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