fried foods, or very processed foods bother me a lot, also really cheesy casseroles......all food I love of course. I have had similar problems for years, when it's really bad, it appears that I'm shedding some mucous lining in my intestine ( I know, so awful) I don't know if that's common with IBS. I've honestly been too embarrassed to tell my GP, I'm just careful with what I eat, but it sometimes doesn't matter, and I just get an upset stomach. I know that the ivig has helped me a lot with this issue, but I don't think that my stomach problems are as drastic, or perhaps I have been afraid to find out.

Oh I have tried cutting out greasy foods, processed foods, dairy, gluten, etc... My stomach will always calm down for a bit, almost go back to normal and then just revert back randomly.

I noticed a mucus too (so gross I know!) and I am pretty sure that is a common symptom of IBS. I have tried food diaries and everything, but it seems like it all depends on the day.

I found the IVIG helped with the respiratory problems but I have found my stomach issues have been worse... I have been a little too afraid to find out too! I feel like I have spent the last 4 years of my life in hospital or at the doctor's office being poked and prodded.

I don't know if this is related but I find that my bowel movements when my stomach is upset is always yellow and watery :S But I do not always get cramps or other symptoms.... Ah well, time to go back and see my specialist again I guess ~le sigh~ the joys hey?

I have similar issues. I had a endoscopy and colonoscopy January 2012 and all was clean. It seems as my levels are dropping (I have still not started IVIG) my stomach issues worsem. I do have a pretty low IgA so I always associate the stomach issues with that. I am very sensitive to lettuce and other fruits and vegetables. I try not yo eat these things outside of home becuase I do not know if it cleaned properly. Even taking precaustins I have issues.

i eat yogurt at least once a day i have always had stomach issues...lately i have what i call pregnancy nauesea... nauesea that gets better when i eat crackers or something similar i take either zophren or phenergan daily....of course i havent lost a bit of weight but i have that nauesea feeling daily.....

in my 20s i had a severe bout of colitis....

my cousin with cvid has ONLY gi issues no sinus or lung issues the igg replacement helps her....

it seems gi issues are pretty common with cvid....

Its good to know I am not alone!

IBS and CVID seem to go hand in hand. I think the number is something like 85% of us have IBS. For classic IBS (folks without CVID) there are def. triggers. For me, though, I can avoid all the triggers and still have a bad day. So, it's still good to avoid them (because that can turn what might have been a good day bad), but don't expect a miracle. I carry Immodium with me at all times.
Triggers are:
Stress
high fat foods
cabbage/beans and other gas inducing foods
dairy products
sugar
caffeine
wheat

I have found that a teaspoon of apple cider vinegar prior to a possible trigger meal helps with digestion.

When I avoid these foods, I do much better. But as I said, I can be doing so well diet wise, and still, out of the blue, get clobbered. The thing to remember is that the immune system is directly related to the gut--and as ours has been compromised from our PIDD it's going to show up like this.

I put up two GI articles this week, and learned some interesting things.
http://cvidarticles.wordpress.com/

CVID will mimic a lot of other GI disorders. But when you treat those "disorders" they don't go away... Because its CVID and not the actual disorder, for instance Celiacs or irritable bowel.

So one study was saying that only 2 of 12 CVID'er responded to gluten-free diet when showing they had Celiacs-while all responded to steroids. Hence it wasn't Celiacs but CVID mimicking it. The original articles are up at the site. It's interesting.

Thank you so much for all of your responses! Good to know I am not alone!

I have low IgGs and IgMs but my IgAs are normal... I have identified some trigger foods but it seems very sporadic. My specialist told me that the IVIG does not help with the gastrointestinal problems that can be caused by CVID... So time to see a specialist again me thinks, I barely made it through a 3 hours shift at work today. Felt like I was going to poop myself the whole time... and I haven't even eaten anything. It's just yellow watery stuff, so gross =/

I have the same issue there is not 1 food that is worse then other its just the way it is and i was picky before where i would go to the bathroom . but now i can go any wherei have pulled my truck off the road and bolted for nearest bush. its a pain but with all the other issues we have to deal with i just eat what i . like as much as i have to go i sure haven't lost weight . good luck to you hope you can find something that works for you

@tealorca:
the apple cider vinegar is something I'm going to try, after a long month of stomach bugs, I feel my poor gut has had enough for a while. What does the vinegar do/ how does it work?

Last year I too went through the very same gastro problems you are all writing about. I was tested for lymphomas, celiacs and many other things. I finally decided to take a ttrip into NY City and see a CVID specialist, Dr. Charlotte Cunningham-Rundles at Mt. Sianai. I had lost 25 lbs. and was scared out of my wits. As soon as I met her she explained why CVID and the malfunctioning intestines sometimes go hand-in-hand. She, ofcourse did her own tests to rule out parasites and cancers, which all came up negative. She then put me on 2 cycles of Entocorte, which is a mild steroid used for Chrohns. Within 14 weeks my intestines were back to normal and I have gained all my weight back and feel great. Try googling her article "How I treat CVID" by Dr. Cunningham-Rundles for some insight. She explained sometimes the intestines in CVID patients get inflamed and needs to get kicked back into line. I hope you get relief!!!!

Thank you so much for that information! I tried a pro-biotic designed for people with IBS and Chrohns called Tu Zen and it really worked! But it's a little too pricey for my budget at the moment but it worked miracles... when i was able to take it.

I am definitely going to read those articles! My specialist is about a 3 hours drive away and the local doctors have no idea what to do with me. I saw CVID and their eyes glaze over and then they ask me what it is. My specialist was at a loss when I asked her about my bowel problems over a year ago and said she could refer me to another specialist... But I have a feeling that they won't know enough about CVID to help me... Seems to be the case where I live.

Knowledge is power and I am going to read those articles and bring them to my doctor or specialists when I go. I have been tested for parasites, bacterial infections etc and all the tests came back negative... So I was starting to think this was IBS but maybe it is just my CVID... ~le sigh~ more doctors, joy.

Anyone else get tired of being poked and prodded, only to be told after that the doc still has no clue what is wrong? I sure am.

HI I am new to this site, too.
Someone was asking about gut issues.
I have had it since 'mentalpause set in about 16 years ago. Though I had had all the other problems that accompny CVID; respiratory infections, UTI, poor resistance to colds, When I got a "simple' cold, I get slammed with sinus, bronchitis and smetimes pneumonia. took the pneumovax and it never took! Had, no idea that would happen but the body, if it is not producing good b-cells, then it cannot mount a reaction to the killed virus or live virus, for that matter. :/

BUT.... the gut thing has really still been very annoying even after getting IVIG and now home admistered (by me!) subcutaneous. The joint and muscle/flulike symptoms are SO much better but the gut issues are still bad. My doctors have found NOTHING wrong up thee except a little bit of IBS but nothing else. Someone mentioned to me to check out SIBO small intestinal bacterial overgrowth. You have to tak nasty antibiotics to kill it but that is the only way you can find if that is what you have, by the meds results. I do not want to trash what I have left up there.

I am starting to wonder about why SO MANY people have this! There is a documentary I just saw last night called GMO Roulette, online until the 17th of this month. t explains about how the GMO affects all aspects of the body, when ingested, not just the bugs that are meant to be killed!, Immune deficiencies, allergies and gut problems are all a part of the symptoms that an oddly large part of the population seem to have. It can manifest when we areolder and gene switches get turned on and off by this stuff and then we have problems. Ver fascinating film and I hope people will see it so they can realise that these huge corporations really do not care about about national health, just profits. A real pity!
Ouor state is voting in a few weeks on a measure to demand to KNOW if GMO is in a product. It is our right to know!
I have said enough.

Gut issues are among the #1 complaints in CVID (along with pain & fatigue). According to the docs I have seen and listened to in conferences - its is not Celiac or Chrons but Celiac "like" symptoms. Not saying they are not real, they are VERY VERY real.

Dr. Charlotte Cunningham-Rundles is one of the very best in our field and last I heard she has around 500 patients like us. I have posted her article before on here. We have so many reference materials that we have a sub-site on here called "CVID Reference Links" that Princess started. Here's a link to it:

http://www.dailystrength.org/groups/cvid-reference-links/discussions

Here is the post with the article in it that you referred to:

http://www.dailystrength.org/c/Common_Variable_Immunodeficiency/forum/12440639-how-i-treat-cvid

Sounds like there are LOTS of us out there with this CVID. I was diagnosed as having it this spring but have had it for many years. Made itelf apparent 15 years ago.

To answer ELC87's question, yes, I have had the gut probles all that time and when I was a kid, sometimes I had them but when "mental pause' set in, that is when it got really bad. The muscle pain and joint pain plus diaresing all the time- up several times a night to pee does not help the rest issue. All the tests came back negative and so I was told, 'You have IBS" :/ Very discouraging but when I got the CVID diagnosis, I did lots of reading online. Here is a group caled ' Immune deficiency

Foundation' for you search.

http://primaryimmune.org/about-primary-immunodeficiency-diseases/idf-publications

This little gem of a pamphlet is free as are other things there to help and inform you. I learned a lot from it and it is in Spanish too. Pretty cool!
Hope this helps you!

Beckettjt