CVID Gut Issues

Common Variable Immunodeficiency (CVID) is a form of primary immunodeficiency. Ever watch Seinfeld? Remember the episode about the boy in the bubble? That’s what he had: primary immunodeficiency. If you want more information, check out the Immune Deficiency Foundation website: http://primaryimmune.org/

In case you don’t want to rip yourself away from Crummy Gut just yet, people with primary immunodeficiency lack antibodies. Their bodies a.) no longer make them; b.) never did make them; c.) make defective ones; or d.) destroy them. The kind of primary immunodeficiency that a person has depends on which antibodies are missing.

CVID people no longer make sufficient globulin. There are something like 30 different problems that people with CVID can have. (CVID, the disease that keeps on giving, right?) Some of them are directly related to having a compromised immune system and frequent infections. Some of them are due to “immune dysregulation.” At risk of insulting any immunologist who might be silly enough to check out this site, here goes: sometimes when a person has a compromised immune system, other cells (like certain white cells–okay, pointing the finger right now to lymphocytes) will jump in and try to help out. Ever have a job where your cohort went on vacation and you had to cover their desk? Remember how you did the best you could but you still ended up running around with your hair on fire and that poor bastard had to deal with the aftermath? I think you get the picture. So, people with CVID can be immunodeficient and also have auto-immune diseases. (Thank you, lymphocytes, for helping out your missing globulin buddies.)

Ready for another level of obfuscation? The “common” in CVID does not mean that CVID is commonplace — it means that it is the most common form of primary immunodeficiency, which is not common at all. Less than 10,000 of us in the United States have CVID. While we may think we are the center of the universe, in the medical scheme of things we are almost orphans. Only about 50% of us have gut issues. So that means few neighborhood gastroenterologists know how to deal with us — and even those who do have difficulty diagnosing what is causing us to crap like geese. You see, we are “special.” We could have IBD, IBS, something that imitates IBD or IBS, an infection, a parasite or any combination of the above. I kid you not: I actually had one gastroenterologist turn on his heels and literally walk out of the room when I started the conversation with, “Hello, I have Common Variable Immunodeficiency and…” His parting words as the door slammed shut: “Go to a university…”

If you do have CVID and you also have gut issues, follow the rude doctor’s suggestion: Go to the nearest university with a decent medical school and teaching hospital — not only to find a gastroenterologist but to find a decent immunologist. Most immunologists deal with hyperactive immune systems (meaning allergies) not immunodeficiency. It will save you countless gut-aches and infections.

Because there are so few resources for us with CVID gut issues, Crummy Gut focuses a fair amount of blog space on CVID gut issues. New articles are listed in the box to the right.

Happy pooping, Crummy Gut CVID people! May the paper be with you.