I've known about my CVID for 18 months now and am receiving IVIG treatments every 4 weeks. I know that stomach problems can go along with CVID but I'm not sure what they are. I will go for months feeling fine but then will have about 3 weeks of diarrhea after every meal and then it will out of the blue get better. I'm also having problems with acid reflux now. My doctor is sending me to a GI specialist for some test but I don't know what they are looking for. Can anyone throw some light on this for me?

Thanks
Heather

I too have stomach problems and low IgG 1and 4, with 2and 3 at the low end of normal. I fight stomach problems all the time. I have given up on doctors with this particular thing, they say it is part of the immune response, or lack thereof, but nothing they give me makes it better. I eat probiotics because I take antibiotics everyday, and then my treatment once every three weeks. Antibiotics don't help the situation, that's why I eat probiotics. The stomach ache I have today has been there for three weeks. the doctor says i'm depressed. Dip shit. I know the difference between depression and immune system problems. I have tried every doctor, with no answer. Any help would be appreciated.

I'm new here, just got my Ig levels tested. Is it possible you might have an Helicobacter pylori infection (the bacteria that causes ulcers)? I was diagnosed with that and needed aggressive treatment two years ago. I'm almost afraid to have it re-checked again (there is a breath test to identify the H. pylori.)

keysfins

I am a long time sufferer of CVID. First malabsobtion is a normal side effect.
Second you are VERY prone to salmonilla, giardia and several other intestinal disorders (sorry I know i butchered the spelling).
Third it is normal to have a sprue-like syndrome. see non-tropical sprue. The only difference is it doesn't improve with diet changes.
Look up these things so that you can understand more of what is going on.

This is a fairly rare disease and the best thing you can do is to use the internet to better understand.

H. Pylori causes acid reflux as well as ulcers. It can initiate cancerous tumors in the GI tract. Antibiotic treatment is complex and difficult, but can eradicate it. Helicobacter pylori has a polysaccharide surface invisible to T cells, just like streptococcus and haemophilus influenza. So if your B cells won't make antibodies to it by themselves, your T cells can't compensate by directing them to. I hope your GI doc tested you for it. Some studies estimate incidence of gastrointestinal cancers in CVID patients at hundreds of times more frequent than the general population.

I had similar problems, it turns out I have Celiac/Sprue Disease. Which is very common in the US, something like 1 in 100. It eats up your IGG. I was on 4 week intervals for infusions, then they notices my numbers were dropping faster than they should. I should be above 400 when I come in for my infusion and I was around 100. I had to switch to 3 week intervals and my numbers were in the low 200's,

I was diagnosed with celiac in October and have been gluten free since. My last infusion my numbers were at 370, so a big improvement.

By the time I get my next infusion I should be back where they want me an I should be able to return to 4 week intervals.

On top of that the diet change, while challenging, has been great. Other than the times I get "glutened" I feel fine.

For what it's worth, we did test for other things, but it turned out to be celiac.

Shelbie had acid reflux so bad, she was on 5 acid blockers daily, and they did no good. At 10 years of age she had the surgery for reflux. After many months of healing and weaning herself off the medicine, she has no more reflux. She was also bothered with bacteria overgrowth in her intestines. She would take diflucen [sp?] and that would help. After surgery that problem disappeared. She has many medical problems on top of the CVID. Once the acid is reduced and goes through your system like its supposed to, you feel much better. She says its the best thing she has ever done for herself. And she has had 36 surgeries.

How did they test you for Celiac? If you have a primary immune disease, there is no lab test that can provide an accurate diagnosis, since the normal lab test looks at your IgA. The genetic test can only be used as a rule out because 35% of the US population tests positive.

The only accurate diagnosis for a patient with a primary immune disease is two separate endoscopes several months apart, with the patient following a gluten free diet between them.