GI Checkups

[liverbird]

My Allergist who diagnosed my CVID wants me to periodically have checkups with a GI doctor. She even feels that I may need to have more periodic checks (possibly endoscopies) with the GI doctor than someone without CVID. I have a scheduled a follow up with the GI tomorrow to see what he recommends. Do any of you other folks with CVID have these GI recommendations from your Allergist or Immunologist as well?

[john]

Lots of us with PID have gastro issues too, symptoms ranging from diarrhoea and pain to varices and the risk of internal bleeding, although this is rare.
I am unfortunate to have the latter, and I see the gastro department at my hospital every three months for a routine endoscopy , which can lead to banding or glueing of suspect veins.
The diarrhoea is sometimes found to be caused by gut bacterial infection, but is often just always there.
For mine I have taken Loperimide for many years, but recently have obtained great relief by following a high fibre diet, based mainly on having a big plate of porridge oats every morning!
Hope this helps...John

[s162216]

In my experience I've not known anyone with CVID to have regular GI checks unless theres a possibly a problem of some description that needs investigating/checking.

It might be recommended that you have a gastroscopy every few years though if your at risk of ceoliac disease (O.K all of those with CVID are anyway, but even more so if you have Type 1 Diabetes as well for instance) to check that you've not developed it. Unfortunately if you have IgA deficiency then the standard blood test for ceoliac disease will not work as it functions on the presence of a certain IgA antibody, and if your having IVIG then other blood tests that work on IgG are problematic as they can in theory detect 'foreign' IgG from the IVIG. They have to do a gastroscopy to confirm a diagnosis anyway of ceoliac disease anyway so it all it does is cut out the blood tests!.

Don't know if that helps you, but thats all I know!

Sam

[liverbird]

yeah I've had stomach issues since childhood. mainly diarrhea and being real gassy. I've learned to control this with diet and I feel probiotics help as well. I guess the real question is, even if we are receiving IVIG or SubQ, are we still more at risk for stomach complications than people without PID/CVID?

[s162216]

Apr 23, 2014 18:43:27 GMT liverbird said:

yeah I've had stomach issues since childhood. mainly diarrhea and being real gassy. I've learned to control this with diet and I feel probiotics help as well. I guess the real question is, even if we are receiving IVIG or SubQ, are we still more at risk for stomach complications than people without PID/CVID?

Depends on what complications it is - we are at more risk of chronic Giardia infection for instance (as IVIG etc is not effective against everything - different parts of the immune system target different organisms and may or may not involve antibodies), and autoimmune conditions like Crohn's disease and colitis conditions are supposedly more common (I have lymphocytic colitis which likely caused the chronic severe diarrhoea I suffered for years as a child and teenager, but only occasionally acts up now - I don't take anything for it as there are no real proven treatments) with those who have CVID.

Sam

[liverbird]

thanks for the info. while we're on the topic of stomach issues. anyone else take probiotics? and is there a certain one which you feel works best for you?

[psalm139]

Hello! Yes, I take probiotics; they have changed my life, as I very rarely ever have any GI issues anymore. I take 1 HDA (High Delivery Acidophilus) and 1-2 Saccharomyces Boulardii with or w/out +MOS daily. If I am on antibiotics, I may take another one of each in the evening. (The probiotics must be taken at least 2 hours before or after taking an antibiotic; I usually wait at least 3 hours, if possible) I was advised to switch up the types every few months, so I also take an Ultimate Flora instead of the HDA on occasion. I hope this doesn't count as medical advice, if it is, I apologize! I am just so thrilled to have gotten everything on track in the GI dept, because upper respiratory infections have been rampant this year with the long winter. As a side note, I also just read an article in our local paper about Thyme Tea. How it is very good for bronchitis -- it thins the mucous and also tames the cough (somewhat). I have had it the past 2 days, and it really did thin out what was being coughed up, and made it so much easier. I have CVID and all the IG's are exceedingly low to non-existent. I am currently not taking IVIG, although if the year keeps up the way it started, I may need to reconsider. Hope this helps

[s162216]

Apr 27, 2014 19:28:07 GMT psalm139 said:

Hello! Yes, I take probiotics; they have changed my life, as I very rarely ever have any GI issues anymore. I take 1 HDA (High Delivery Acidophilus) and 1-2 Saccharomyces Boulardii with or w/out +MOS daily. If I am on antibiotics, I may take another one of each in the evening. (The probiotics must be taken at least 2 hours before or after taking an antibiotic; I usually wait at least 3 hours, if possible) I was advised to switch up the types every few months, so I also take an Ultimate Flora instead of the HDA on occasion. I hope this doesn't count as medical advice, if it is, I apologize! I am just so thrilled to have gotten everything on track in the GI dept, because upper respiratory infections have been rampant this year with the long winter. As a side note, I also just read an article in our local paper about Thyme Tea. How it is very good for bronchitis -- it thins the mucous and also tames the cough (somewhat). I have had it the past 2 days, and it really did thin out what was being coughed up, and made it so much easier. I have CVID and all the IG's are exceedingly low to non-existent. I am currently not taking IVIG, although if the year keeps up the way it started, I may need to reconsider. Hope this helps

No problem at all! If you find it helps then good for you!

I don't take probiotics personally, mostly because I will admit that I tend to dislike things like yoghurt etc. I will additionally admit that I am sceptical about most of the claims that are made about them as probiotics are unregulated so you don't know what your actually getting from each type, and there is a lack of hard scientific evidence for or against most of these claims (by that I mean peer reviewed science, not the sort that magazines do). Perhaps its just because I'm scientifically trained (Pharmacology), but if other people think probiotics have a personal benefit then its up to them and I hope they find then helpful.

Sam

[psalm139]

Thanks, Sam, for your kind reply. I have been in the medical field for the past 25 years, and I was exceedingly skeptical myself. My primary care MD suggested I try the HDA (he uses both naturopathy and medical skills combined) and was absolutely shocked at how rapidly my GI symptoms resolved (just a few months), after having them my entire life. I am currently 54, and have been taking them for 2 years now, with ongoing good balance unless I get a nasty bug, which is now rare. I used to end up in our ER at least 4 times a year with dehydration from the big "D". I am no longer a skeptic. I agree that due to non-regulation, it is necessary to do a good search for a good brand.

The daffodils are up overnight, and there is new snow on the ground here in Wyoming! Veronica

[s162216]

Apr 27, 2014 19:59:26 GMT psalm139 said:

Thanks, Sam, for your kind reply. I have been in the medical field for the past 25 years, and I was exceedingly skeptical myself. My primary care MD suggested I try the HDA (he uses both naturopathy and medical skills combined) and was absolutely shocked at how rapidly my GI symptoms resolved (just a few months), after having them my entire life. I am currently 54, and have been taking them for 2 years now, with ongoing good balance unless I get a nasty bug, which is now rare. I used to end up in our ER at least 4 times a year with dehydration from the big "D". I am no longer a skeptic. I agree that due to non-regulation, it is necessary to do a good search for a good brand.

The daffodils are up overnight, and there is new snow on the ground here in Wyoming! Veronica

Well its great that things improved like that for you then! The diarrhoea that I used to get for years (likely from the lymphocytic colitis) just suddenly disapeared, and only ocassionally surfaces now for a few days. Don't know why!

Sounds nice in Wyoming Veronica! We didn't get any snow this year in most of the UK (Scotland got quite a bit though), but we did get one of the wettest winters on record which caused loads of flooding etc. Its turning into quite nice sunny or overcast weather now though generally.

Sam

[psalm139]

Yes, I am very thrilled, and it's tough not to want to share Hope your summer is a beaut, and hopefully lush after all the rains. Veronica