CVID and gastro issues

[julieb]

It just occurred to me to share this. I was diagnosed with CVID in the 1990s and have always had gastro problems. This has led to many serious health issues for me, seemingly all linked to CVID. One of these is osteoporosis and this is the one which has led to my having to give up work and many other activities I enjoy. I was told in 2013 that osteoporosis is a known risk for those with gastro problems/malabsorption. I wish I had known I was at risk as I could then have discussed preventative measures with the gastro consultant. They might not have made any difference but at least I would have tried, rather than be in the dark about the possibility for 20 years. If you currently have gastro issues - discuss osteoporosis with your consultant.

[jackiedal]

Thank you so much for posting this. I have been contemplating whether to schedule an appointment with my gastrointestinal MD or not. I have been trying to lose weight and my irritable bowel has intensified. I will now talk to him about osteoporosis and other matters. It is so hard to decide when to talk to a doctor or not. I feel differently every day. Some days good, others just terrible and then good again. I also have food allergies which complicate things. Wishing all a good day.

[aryani]

Another addition: it's possible to monitor whether you are suffering bone-loss or not. And there are some med's to counter/prevent bone-loss. So, it's certainly worth discussing. Besides that, malabsorption can lead to other deficiencies as well (vit. b12/d or iron(Fe)/potassium(K)). Deficiencies leads to various complaints, varying from annoying to very serious. I am very happy that my doctor's test regularly on deficiencies.

[s162216]

There is actually a ceoliac disease like condition associated with CVID and it has near identical symptoms, but unlike ceoliac disease it's not gluten sensitive so a gluten free diet doesn't help.

Very little research has been conducted into it, and it probably doesn't help that those with CVID appear to be more prone to autoimmune conditions like ceoliac disease anyway.

I suffered from gastro issues for years, but then suddenly one day the diarrhoea that frequently got just stopped occuring and things actually improved a bit (although they went in somewhat different directions as well).
Strangely, a year ago I had my appendix removed and ever since everything has been completely fine for me; I've not been able to think of a reason for this, although possibly the massive doses of co-amoxiclav, gentamycine and piperacillin they had to give me post operatively might have had something to do with it if there had been an undiscovered gut bacterium causing the problems. Of course that's only speculation though.

Sam.