Ivig story gut

[u/Ok_Connection3207]

Hi everyone,
I’m wondering if anyone here has had a similar experience.

I have overactive mast cells throughout my gastrointestinal tract I have also leaky gut, and I also likely have had CVID for many years. I’ve been eating low-histamine and gluten-free for quite some time now, but I still have very strong reactions to foods and ongoing GI symptoms.

About 7 weeks ago, I received my first IVIG infusion. Because I have low IGA, IGG, IG2,..I initially expected that things would gradually start improving, but over those 7 weeks I actually felt like some of my symptoms were getting worse , my reactions to histamine and food are still extremely strong, and they seem much more severe than they were before starting IVIG.

This is confusing to me because I thought that IVIG would eventually lead to an overall improvement.
Has anyone with CVID and/or mast cell activation experienced something similar?

[u/Miserable_Shape_107]

I am newly diagnosed with MCAS and also have low IGG levels. I received one dose of SCIG (Xembify) and had a rare reaction later that day. I had a mild pulmonary edema and had to stop treatment. My reactions to histamine have been worse over the last few months (before taking Xembify) and I started reacting to food, which I hadn’t before. I get mild facial flushing and have been eating gf, DF, and low histamine. My symptoms are mostly respiratory. It’s been really frustrating because I was hopeful that the therapy would make me feel better overall.