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.

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/ Common Variable Immunodeficiency Support Group

Gastrointestinal Issues

ELC87
ELC87
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?
deleted_user
deleted_user
Yay for knowledge! You got it!
I have been taking the L. plantarum but mixed with other species. I have no idea if they will work. Maybe I need pur set of ONLY L. pantarum? What do you think Maybe my issue is that the stomach acid trashed the others and here as so little left of the plantarum, that it was not enough to help, anyay. Also I am on antibiotice EVERY time I get a cold, Ithink that they trahsed the enteric flora too. That is what I read and can comepletely understand! I will check out the plantarum from a reputable source here in the Calif.
Yeah, I now about gossiping and non attentive nurses. That is why decided to do the hoem infusions. If you ever want more support with deciing on it, let me know. I totally found it to be he best for me. Every -body has different tolerances and I understand yours!
YOu mentione d the GMO grains that are in ALL our food, apparently. I m curious i you have seen something online, for a few more days, called " Genetic Roulette'. It is very informative and not what Monsanto wants us to know. I had NO idea... think this is wy a whole generation or two are coming down with these weird immune issues! We need to get a clss action suit going, IMHO. This did not exist in my mother's gneration or her antecedents' time, either. It HAS to be the GMO and other pesticides that we are dealing with. *sigh* Sorry to be so negative but when I saw the film, it totally put 2+2 for me!
Jill
deleted_user
deleted_user
Yes, I make a 'no knead' bread that fermnts the flours overnight with a bit of yeast. MArk Bittmann of the NYTimes has a great video online on how to make it. SO easy. I make it about every two months and eat a couple times a week. VERY delicious. Very artisenal. The flavour is fabulous! I add pumpkin seeds (organic, of course). I fyou like to make bread this esy one is the one you will never need to kneed and easy to do! TASTY. I will not eat any other bread, ever!
ELC87
ELC87
L. Plantarum is special because stomach acid does not phase it, so it actually survives right through your intestines and actually flourishes. Thus, why some probiotics are not as effective because they cannot survive the highly acidic environment in the stomach. I was talking to my cousin today--she is a naturopathic doctor--and she was saying there are other probiotics you can get with mixed cultures that are even more effective than L. Plantarum on its own. Makes sense, we have over 500 different strains of bacteria living in our digestive tracts.

No harm in giving it a try! I am also going to experiment with soaking my flours and grains before cooking them. L, Plantarum is a traditional bacterium to use in this process and it helps your whole digestive system in breaking down and absorbing nutrients!

Corn is one of the greatest evils in our food industry but wheat is not much better. Red Fife is a wheat strain grown in Canada that has not been genetically modified. I just got some a few weeks ago and it is amazing in breads :)

Thanks so much for the kind words and support :) I am considering the at home treatments... we shall see how my next few IVIG treatments go.

And if you want to battle GMOs and the food industry, grow your own food! There are is some amazing open source research and development going into window farms. You can grow about a salad a week in a single window :P

http://www.windowfarms.com/

So cool, definitely want to make one of these sometime... Maybe the next time I am bored and at home sick :P
deleted_user
deleted_user
I am wondering, do you have IgA or other IG antibodies? That is a concern, for sure. They made my rate lowered , in the beginning, to mke sure I did not have a reaction, since I did not they upped the rte and I got out of there qucly. MAybe you can have the rate increaed now, after 20 months??
ELC87
ELC87
My IgAs are normal but my IgGs and IgMs are low, and at the hospital I am at it is against procedure to go above 200mL/hour for infusions because it heightens your risk for a reaction. I also feel a LOT better the slower it is, so I don't mind the extra time. I used to have it at 400 and the side effects were brutal.
deleted_user
deleted_user
AH, interesting. That is maybe why my gut issues can be different from yours. IgA supports enteric floral health and balance, mainly, from what I understand. My IgM was fine but IgG and the IgA are low. I guess that is why they call it VARIABLE. Ha! It 'varies' from one person to the next! Learn sonething every day!
I think the gut issues will not ever go away and two specialists who know about CVID. in GI. told me that since I had this for so long my gut is permamntly disabled and it will only get worse. Depressing...
deleted_user
deleted_user
hi and welcome---sent you a message
deleted_user
deleted_user
Sorry lol ELC87 ---sent you a message
deleted_user
deleted_user
That's ok. What was your message?
beckettjt
deleted_user
deleted_user
I have trouble finding the place to post a direct reply to your message. I just hope it gets there for you to read!
bjt
deleted_user
deleted_user
How do I post on the treatment section? It tells me that I am not a member!!! huh? Any advice is welcome.
ELC87
ELC87
Try logging out and signing back in again? Either that or the website is not working properly... you could also try using another web browser, but I doubt that is the issue.
deleted_user
deleted_user
my cousin that has cvid has only the gut issues....the ivig helps her.... so some it does help...it never helped my gut issues....:0(
carlsonamy
carlsonamy
I would try really cutting out the gluten and dairy. It worked for me. Sugar can also be an inflammatory although I have not tried to cut that completely yet.
ELC87
ELC87
Dairy and I have always been on good terms. As long as it is not ice cream. Same with glutten. Though I am going to change how I consume my gluten because--after tons of research-- I am not convinced that having CVID means you have Celiacs, IBS, or Chrohns. It can imitate the symptoms of those conditions. Thus, gluten might cause you problems but it is not because of what causes celiacs. Also, we have greatly changed how we consume grains in the past 100 years. It is very traditional to soak grains in water or cultured buttermilk--which essentially ferments the grains-- to break down the phytic acid and enable your body to absorb the nutrients from the grains--thus they become easy to digest and actually aid in absorbing nutrients from meats. Now I am not saying this is going to work for all people, but it is worth a try if you don't want to give up bread!

Also, pre and pro biotics are EXCELLENT in treating Chrohns and IBS. Lactobacillius Plantarum v299 being one of them because it not only survives in the acid in your stomach but flourishes throughout the digestive system. They can even survive antibiotics. So awesome for people who have gut rot because of antibiotic treatments. And antibiotics are terrible for you, it was after being on them for months on end that my gastrointestinal system became so irritated. I think that prolonged use of antibiotics disrupted the beneficial bacterial flora of my gut.


I do not have any allergies to foods and have done elimination diets and allergy testing. I take that back, soy milk wreaks terror on my insides. Learned that while weaning off that elimination diet I was on. Any unfermented soy products are super bad for you, including tofu and soy milk.