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Jodele

M.e.n. Syndrome

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My mom called me yesterday and was frantic. She went to her endocrinologist and he told her that he thinks she has M.E.N syndrome. What I read about it is that it hits any gland in the body and makes tumors in them. It is genetic so my sister and I most likely have it. Both my sister and I got Graves's disease when we were 30 and I have celiac. My sister has it too but don


Jodele Fecal Antigliadin IgA 21 dx with Graves diease 10/06

Emily Has a positive blood test Negitive biopsy (she has gain 10 lb since gluten-free diet)

Melinda giong for testing

Katie going for testing

All gluten free 8/06

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Wowzers! This must be really shocking and upsetting.

I found this very informative website (in plain English, not "medical-ese").

www.endocrineweb.com/MEN

This looks very serious -- but not a death sentence; you need to become very in tune with your body and get checked a lot. It seems like a relief that "they" (medical community) know a lot about this condition so you should be able to get a lot of support. Good luck. Keep us posted.


Looking back, the mysterious horrible itchy rash that I had when I was a teenager looked suspiciously like DH!

I've had a chronic sinus infection since forever.... And lots of other random unexplained stuff.

I used to think gluten was not a factor. I was sick but I didn't know why.

Gluten Free since Sept. 6, 2007........and feeling stronger every day!

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Also, I think you and your sister should get tested ASAP because there's "only" a 50% chance you have it if your mother has it. Better to know one way or the other, rather than worry about the "what if..."


Looking back, the mysterious horrible itchy rash that I had when I was a teenager looked suspiciously like DH!

I've had a chronic sinus infection since forever.... And lots of other random unexplained stuff.

I used to think gluten was not a factor. I was sick but I didn't know why.

Gluten Free since Sept. 6, 2007........and feeling stronger every day!

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Jodele,

Don't know if you've seen this web site, but it has some information on M.E.N. syndrome, as well as some links to other web sites:

http://www.parathyroid.com/MEN-Syndrome.htm

Also, there's a rare disease database online you could check out that might have something helpful:

http://rarediseases.info.nih.gov/

Good luck to you & your family!

Martha


Diagnosed Fibromyalgia & osteoarthritis in multiple joints 12/06

Diagnosed gluten intolerant through dietary trials 8/07

Enterolab positive for gluten, casein, soy, egg

Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6)

Gluten free 8/10/07

Casein free 8/27/07

Soy & egg free 9/8/07

Eggs back again (whoo hoo!) 11/08

Diagnosed chronic fatigue syndrome 12/09

Starting various supplements/vitamins in hopes of feeling better!

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Thanks for responding to me. My mom is going to get her results tomorrow. Her doctor did not want to discuss it over the phone and wanted to see her in person. lol. Yes my sister and I are going to be tested as soon as my mom is dx with it. We all believe that this is what is wrong with her. It's just strange that my sister and I both got graves disiase when we truned 30. thanks agian for the web sites that you found. Will post what my mom finds out.

Jodele


Jodele Fecal Antigliadin IgA 21 dx with Graves diease 10/06

Emily Has a positive blood test Negitive biopsy (she has gain 10 lb since gluten-free diet)

Melinda giong for testing

Katie going for testing

All gluten free 8/06

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