I have suffered with Vitamin D Deficiency and Anaemia many times in the last ten years.
Gastric problems have always been part of my chronic health experience even before I got the answer about why they could be happening was likely to be EDS.
I have been suffering with IBS Constipation , difficulty swallowing and Muscle spasms in the gut for decades. I had several emergency admittances to hospital because of lack of movement in my intestines but with no explanation for the blockage by the time I saw a Consultant.
Obviously , I now know that this was caused by quite a common intestinal issue for EDS warriors called , Pseudo Bowel Obstruction Syndrome. I doubt that it will ever be added to my medical history though as there is only one Neuro Gastroenterologist in the UK , and my local services will never fnd a visit to see them.
I also had my Gall Bladder removed in 2014 despite having a good diet and being severely underweight ( it took a year before a Doctor was convinced my gall bladder was at fault for my infections and pain as I wasn't the right "type"to have gallstones). When removed ,however, they noted that it was saggy and full of stones,our nasty EDS tissue at work again!
I realised that along with my gut dysmotility and recurrent SIBO like infections that I was likely to be suffering from regular vitamin deficiency and adapted my diet and began to take supplements on top of a basic vitamin and mineral complex daily ( based on my own research of current studies for EDS and Fibro). In truth , I should not have vitamin deficiencies unless I cannot absorb nutrients properly in the gut.
Now , I have been found to be severely deficient in Vitamin B 12 , Iron and Vitamin D and will be tested for Intrinsic Factor tomorrow to check for Pernicious Anaemia or Vitamin B12 Deficiency Anaemia.
I have had yet another to and fro debate with my GP today because as ever they wanted to use supplements before injections until the results are through despite being informed that I have been supplementing for years and my Neuro symptoms have increased. I have yet to go the next round with the doctor about having an Iron injection instead of supplements which will be the next battle when the results come back.
So , I am asking for the help of either EDS Professionals and Patients
What have been your experiences with Gastro problems and vitamin deficiencies?
Have you got Pernicious Anaemia , or do you know how common it is for EDS patients?
Do you know what the most successful treatment is for EDS patients with nutrient malabsorption or Pernicious Anaemia?
Are there any other tests that I can ask my GP for to prove I have malabsorption linked to EDS , as it has never shown up in tests I have had before ?
Thank you for your help , I hope I will get some answers here that can help us all , and I will post again in the future with my experience of this and what I found to be successful in case it helps others.
Take care and enjoy the silver linings you find each day, no matter how thin they may be.