Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hey everyone,
I am new on this site and am impressed with all the responses to the discussions, so I thought I'd start my own...
I had adult onset of CVID around the age of 18 and then it took another 6 years before a diagnoses was made. I struggled with chronic respiratory and sinus infections--and by chronic, I mean I had an 8 months bout of sinusitis and a year long lung infection. Antibiotics would make me feel okay but less than 24 hours of being off them I would be just as sick again! I was on antibiotics for almost 8 months straight and my digestive tract has not been the same since--and that was 2 years ago... And my gastrointestinal woes are pretty much unchanged, if anything worse.
I have been on IVIG for the past year and my chronic infections have subsided for the most part. I am not sure if it is all the antibiotics I have been on or what... I realize that IVIG does not help address the gastrointestinal issues come CVID patients can experience.
Does anyone else have digestive problems and CVID? My doctors have tested me for parasites and infections--all came back clean and yet half the time I have diarrhea or barely digested food coming out of me. I will bloat up and have cramps, etc. I have been tested for food allergies and been on elimination diets (to test for food allergy/sensitivity) and all of those came back clean too! The only irritant I have pinned down in alcohol--so I completely cut out booze--which helped initially but now I am back to where I was and have still not had a drop of liquor.
So I am thinking this might be IBS--not uncommon with CVID--or an infection that my doctors have not caught yet. Any suggestions or tests I should be getting done? Or perhaps foods that might be the culprit?
I am new on this site and am impressed with all the responses to the discussions, so I thought I'd start my own...
I had adult onset of CVID around the age of 18 and then it took another 6 years before a diagnoses was made. I struggled with chronic respiratory and sinus infections--and by chronic, I mean I had an 8 months bout of sinusitis and a year long lung infection. Antibiotics would make me feel okay but less than 24 hours of being off them I would be just as sick again! I was on antibiotics for almost 8 months straight and my digestive tract has not been the same since--and that was 2 years ago... And my gastrointestinal woes are pretty much unchanged, if anything worse.
I have been on IVIG for the past year and my chronic infections have subsided for the most part. I am not sure if it is all the antibiotics I have been on or what... I realize that IVIG does not help address the gastrointestinal issues come CVID patients can experience.
Does anyone else have digestive problems and CVID? My doctors have tested me for parasites and infections--all came back clean and yet half the time I have diarrhea or barely digested food coming out of me. I will bloat up and have cramps, etc. I have been tested for food allergies and been on elimination diets (to test for food allergy/sensitivity) and all of those came back clean too! The only irritant I have pinned down in alcohol--so I completely cut out booze--which helped initially but now I am back to where I was and have still not had a drop of liquor.
So I am thinking this might be IBS--not uncommon with CVID--or an infection that my doctors have not caught yet. Any suggestions or tests I should be getting done? Or perhaps foods that might be the culprit?
That is fine, not to worry. I am glad you got to me on this. I had only blood tests and they were negatory! ;) But you say that the blood tests are not relaible??? i am wondering, why the hell did my doctor not tell me this? I am due for a colonscopy :/ and will ask that he checks for that. Is Dr Fine's test a blood one, though? Should I ask for that to be done?
I really want to avoid the colonoscopy. yuck.
Thanks!
I have also had a terrible time with IBS-esque issues, and they remain the most constant complaint for me concerning my CVID - along with rampant bouts of yeast overgrowth and weird little skin breakouts. It especially sucks because I'm a fantastic cook and adventurous foodie, so picking-and-choosing my battles at restaurants can be a real letdown.
I tried a couple of different types of diets: Macrobiotic (OMG the beans and legumes were horrific), Raw (the sheer amount of nuts was enough to have me curled up crying, clutching my stomach), and a Mediterranean diet. Nothing really worked, especially if any soy or grains were involved. Whenever I do choose to eat an off-limits food, the agony lasts for days - and yes, I too have noticed strangely colored stool, a really horrific odor, and mucus.
I have found that if I stick VERY STRICTLY to a "Paleo" type diet, most issues are under control. This includes wholly unprocessed foods, huge amounts of leaves/fruits/vegetables/roots, nuts, as well as meat and fish. I stay as far away as I can from dairy, soy, and any processed grains like wheat/spelt/rye/barley/oats/rice. I drink a lot of coconut water with pulp, which also seems to calm my gut.
I hope you find some relief soon!
Does anyone have horrible osteoartthriis or poly arthtritis connected with their CVID? I sure do. In my hands. MAN, it hurts! Wondering if the infusions are making things worse but I sure could NOT live in relative comfort with out the subcutaneous IgA/ Igg. When I go too long between dosing, I get sick again with the terrible flu symptoms and worse runs.