Immune Deficiency Enteropathy

I understand that Facebook hosts a 'UK PID Patients Group'. It is a closed group (not for public viewing) and you have to be accepted by the moderators to join. However, you can just ask questions about various aspects of problems and treatments. Someone usually has a helpful reply and understands what you are going through. You may find someone in the group with a similar symptoms.

I do not know anything about this condition but there is a charit that helps people with Primary Immune Deficiency www.piduk.org/ who may be able to help you.

No, I don't.
Are you on a specialised diet at all ? Presumably your GP or local hospital give support ?