Hello.....we continue to be confused our daughter was just diagnosed in June 2011 with MCAD but she also has elevated liver enzymes (which I have posted before and heard that this may clear itself up with the MCAD meds) but now also has very low cortisol levels.  As well, she continues to have some type of eosinophiliac disorder.  Ever heard of low cortisol in MCAD???  thanks

Heather,
Wow...if I am understanding you correctly, you are saying that it may be possible that an autoimmune disorder of some type may be the underlying cause for elevated eosinophils, mast cell problems, low cortisol and liver issues???  If so, the diagnosis of MCAD would not be correct?  Would she then not need to take Gastrocrom, Zantac and Zyrtec daily??  I know you are not a doctor so please know that I am not holding you to anything.  We are just brainstorming together.  However, this may lead to something.  Rylee's GI doc at Cincinnati Children's was out of town Frid. when the low Cortisol report came back.  His nurse called and said she had consulted with the Endocrinologist on call and that if Rylee needed to go to the ER that I would need to notify them of what her Cortisol level was that morning.  Anyway.....I looked up Addisions.  Rylee doesn't have any hyperpigmentation issues.  Isn't that one of the hallmarks of that particular disease??  As well, my husband has same issues as Rylee but continues to go undiagnosed.  When he flares up though he is much worse.  His almost becomes life threatening.  His last major flare up lasted from 2005 through most of 2008.  We took him to NY to see the world renowned Dr. Richard Warner for Carcinoid or other NETS.  After being in the hospital almost a month, they could not determine what was wrong but they knew that it wasn't Carcinoid. Steve began flushing in 2005 and to this day his face and upper chest STAY flushed (just varies in color).  Sometimes he is hot pink, sometimes sunburn color, and sometimes has a purple tone to it. Anything else you can explain or info you can pass along would be helpful.  Any ideas as to what other specific autoimmune disorder it could be???
thanks so very much,
Angie

Heather,
Got it!!!  I originally thought MCAD was the end all but I hear what you are saying.  Hopefully, we can find out what the underlying issue is.  I will follow up with you as I talk with her doctor at Cincinnati Children's.  I am amazed at the amount of helpful info. I have found on this forum.  It really helps me know what types of questions I need to be asking the doctors and it certainly helps me do my research so I am prepared.  thank you for all the clarifications!  God bless and have a GREAT day!!
Angie

Absolutely!!!  Educating yourself makes a HUGE difference  I'm happy to help in any way I can... that's what we're all here for.

Heather