Visiting the dietitian & EDS

Today was my appointment with my new dietitian. I've seen a few over the years, most of which have been helpful, to some degree. She has been the most helpful so far. Of the research on FODMAPs ive found online ive never really understood it as well as I should, until I got my breath testing done.

I dont know whether its part of my OCD but I research the crap out of most things. Its not that im a know-it-all or want to appear as one, its why not be informed? It has helped me in the past to be knowledgeable about anything that is medically challenging myself and my family and now on my quest to learn inside and out my future with EDS, I may be able to help a few others along the way.

So turns out even she agrees that im a bit medically complex by looking at my results. I still have to wait for November to find out from the Gastroenterologist what the actual diagnosis if any and what the plan is, but now im hoping its NOT SIBO or IMO as even thought are apparently treatable, the treatments are hideously expensive (NZD$2,000). On the other hand Fructose Malabsorption is a pretty untreatable condition and would be an ongoing issue.

Today we talked about how my avoidance and restriction is leading to an eating disorder. Finally I can be in a room where I can talk about it. I told her the horror that was the last month of exlusion diet, severe constipation and dangerously low BMI. I have managed to gain 4 or so kgs back but not in the right way, bowls of low FODMAP muesli and a block of plant-based chocolate most nights, while it was enjoyable and worked, has now left me in a bit of a state. We talked about what is and isnt working most of the time. She knows EDS and its GI tract issues well. She already knew before I came in today she was likely to prescribe me sometime to help. Its called E028 (E stands for Elemental). Its a meal replacement drink that contains a lot of amino acids, omegas and all the things my current next-to-nothing diet doesn't provide. The chemical list in the ingredients made me shudder but willing to try anything... it also means if I have a day where i dont want to eat much i know im still being safe. Its not tube feeds so Im feeling super grateful really as im still able to eat...  

Things are just going to be very different from now on... 

Next stop, Gastroscopy 22nd September, watch this space for updates!