My new immunologist had me do a test recently called a CU index. I had an elevated result with autoantibodies against IgE.
More info on CU index if interested https://www.viracor-eurofins.com/test-menu/2103-cu-index/
From what I understand, the CU index is done for patients with chronic urticaria (hives) and when elevated it means that there is an autoimmune basis for their disease (rather than the hives being idiopathic). My immunologist explained that because my test came back with positive autoantibodies against IgE, it means that my body is producing antibodies that are attacking the IgE receptors on my mast cells, thus aggravating them and causing the release of histamines, etc...
I do not have hives but rather my symptoms seem to match up much more with someone who has a mast cell disorder: severe fatigue, puffiness/swelling/pressure, nausea (with and without vomiting), bloating, headaches, dermatographism, flushing of skin, dry itchy skin, rashes, . I have never had anaphylaxis.
When I read about people with Mast Cell Disorders, they talk a lot about the importance of finding the underlying cause of the disease. So I am confused as to whether the autoimmune piece for me is the underlying cause of if there is something else that is going unaddressed. I did test positive for giardia about a year and a half ago (which could have been the trigger for all of this) but I have had no improvement in symptoms since treating it- basically i still feel really horrible all the time.
My current treatment plan that i started the last 1-2 months: xolair injections, h1/h2 blockers daily (zyrtec, pepcid), histamine blockers when eating, and modified low histamine diet. I am also discussing trying low dose naltrexone with my PCP. These are all new things I have started recently so have not noticed any improvement in symptoms at this point but am desperate to feel even slightly better.
Does anyone else have experience with having an elevated CU index? Do you have other conditions or are aware of an underlying cause? What does your treatment protocol look like? Just asking for anyones experience or input
More info on CU index if interested https://www.viracor-eurofins.com/test-menu/2103-cu-index/
From what I understand, the CU index is done for patients with chronic urticaria (hives) and when elevated it means that there is an autoimmune basis for their disease (rather than the hives being idiopathic). My immunologist explained that because my test came back with positive autoantibodies against IgE, it means that my body is producing antibodies that are attacking the IgE receptors on my mast cells, thus aggravating them and causing the release of histamines, etc...
I do not have hives but rather my symptoms seem to match up much more with someone who has a mast cell disorder: severe fatigue, puffiness/swelling/pressure, nausea (with and without vomiting), bloating, headaches, dermatographism, flushing of skin, dry itchy skin, rashes, . I have never had anaphylaxis.
When I read about people with Mast Cell Disorders, they talk a lot about the importance of finding the underlying cause of the disease. So I am confused as to whether the autoimmune piece for me is the underlying cause of if there is something else that is going unaddressed. I did test positive for giardia about a year and a half ago (which could have been the trigger for all of this) but I have had no improvement in symptoms since treating it- basically i still feel really horrible all the time.
My current treatment plan that i started the last 1-2 months: xolair injections, h1/h2 blockers daily (zyrtec, pepcid), histamine blockers when eating, and modified low histamine diet. I am also discussing trying low dose naltrexone with my PCP. These are all new things I have started recently so have not noticed any improvement in symptoms at this point but am desperate to feel even slightly better.
Does anyone else have experience with having an elevated CU index? Do you have other conditions or are aware of an underlying cause? What does your treatment protocol look like? Just asking for anyones experience or input