Protein malabsorption

I have already been thru all of that  Deanne.  I had such bad swelling my skin was tearing and seeping fluid.  I was swollen from my abdomin to my toes.  I lost all hair on my body except the hair on my head but that thinned out and has not grown back a thick as it used to be.  My skin was literally tissue thin and you could see my blood vessels like sitting on top of my skin.  Anything that I rubbed against would tear and bleed uncontrollably.  I developed burning mouth syndrom and had sore in my mouth.    I developed a golfball size mucas ball in my sinuses and now have chronic sinusitus.  I would just think about a food and become sick to my stomach, vomiting, light headedness.  I got to the point where I could only eat soup and basically broth.  by that time.  There were other things I went thru as well.  I was like a third world victim of starvation.
It was horrible and I still have to fight for all the attention I need to continue the fight for health.  In this area it is not dealt with so I was told I was very rare with this condition, maybe 1 of 2 or 3 people in the US with this degree of malnutrition.  Dr Toder had to consult with Drs from Ca to see what she was dealing with and I have contacted her office recently to see if I should go bak on the TPN but she responded my blood work was normal (which it is not) and didn't need the TPN.  
I could go on and I'm very stressed and frustrated that I have had to endure all this plus loose time at work and money due to the lost work time due to the odor.
Sorry to have had so much to say.
Thanks for your help.  I will be contacting Dr Roslin's office this week and caneling my appointment at Tufts as I don't think they know what to do either. 

Jbird on the complications forum has been seeing someone at Cleveland clinic. She has been through so much more than I have been through. She was a grreat help as well. I had some of the symptoms you had but not all of them. There are more of us out here than you think. I should have had my first surgery as i was protein deficient and was never treated, then I had had the first revision. I went 18 months and didn't have problems then the bottom dropped out which was the beginning of my major problems. I went down hill very quickly. I was on 6 vitamin k capsules from vitalady. I was Also very grey looking. Sad when a Dr. That I work with and stops me to say there is something very wrong. She doesn't really talk to anyone at the office. She is a bariatrician and is working with a new surgeon here in Tucson. I ended up with quite a few broken teeth. I couldn't stand long enough to even send a fax. They were worried I was going to die. It took quite a while before I realized how sick I really was. When they all tell you to take the large quantity of protein shakes, please do it. I know someone who didn't take the Dr. seriously and died. You don't want to be like him. Take this very seriously and get to a Dr. who understands malabsorption. You are not the standard rny patient most of them think. I experienced this with a sleep specialist who is also a bariatrician, she didn't. understand our anatomy. I did not convert to a DS but had my common channel lengthened. I was not able to travel like some of the other perplex here. They all have been helpful here to help me. That is why I check here to help people if I can. If you have more questions please let me know.