PKD with Eating Disorders

[Frankie24]

Hi All,

I just assume there are patients with Kidney Disease who also suffer from eating disorders. Mine have been severe since childhood. This has further complicated my case. I have a hard time working with the Nutritionist as they are focused on kidney friendly diet and not me as a whole person. I will be seeing a new one in a few weeks because the last one was horrible, no knowledge with eating disorders, I realize it is a fine line but one that has to be considered. Anyone else run into this problem. I run a group for eating disorders and I am a member of EDA but any other suggestions are appreciated. Just handing me a diet is not a simple answer even though it is so very important !

[Hidden]

Hi, I have zero knowledge about Eating Disorders and CKD so I called a friend I met at a meeting on CKD and asked her. She told me three things to mention. One is the National Eating Disorder Association and I noticed you already mentioned them. Two and three are websites that she gave me that were helpful to her and her friends. As I said I have no information to help you on that in my files but I hope these two help you.

karger.com/Article/FullText...

ajkd.org/article/S0272-6386...

[Hidden]

There seem to be different issues with each type of emotional eating disorder and CKD. If you could be more specific about yours either in this community or by sending me a PM I can ask around and see if anyone has something specific that will help you.

[Frankie24]

Hi, you don't mention much about your eating disorders, I was most interested in people's experiences with CKD and eating disorders, how they handle the " DIET " issue which really messes with my head, although it is necessary to manage a kidney friendly diet in order to remain off dialysis for as long as possible or until kidney transplant happens and to remain as healthy as possible as ED's tend to be a long term disorder. I have been dealing with them and in therapy for this problem since I was in my early teens. Anorexia, bulimia, Overexercise, laxative abuse, all the things one should not be doing. While I am handling it O.K. right now there are times it becomes very tough....ED's are not your friend in any case and especially because they mess with kidney functions as well. I am at 13 % eGFR so I can use as much support as possible around it, as I know others who could probably too ! As I said, I get therapy and go to groups was just curious if anyone on the forum had anything to offer.

[Hidden in reply to Frankie24]

Based on what you said it would be difficult to treat your CKD with an ED also prevalent. A nutritionist could provide you with the most specific kidney-friendly meal plan based on your labs and still, it would go against the ED. From what I've read it's more likely a neurological issue with the ED and CKD is more physical.

This appears to be one of those times where you have to make a choice to fix one issue, the ED, without doing too much harm to the physical, CKD, until they don't work in contrast. Have you consulted a psychologist or some other physician who specializes in ED?

[Frankie24 in reply to Hidden]

Yes, have worked with many professionals in the field of ED for a very long time. You are right, one is not good for the other, I am battling to fight the PKD and not do further damage to my health. The problem as it began was that the nutritionist I was sent to knew nothing about ED's was only there for the kidney's and sent me into a tail spin which it has taken me months to recover from. I refuse to see any further nutritionist's or dietitian's as they only seem to make the problem worse. That is the illogical ED talking. I believe weighing less than 100 lbs. to be acceptable, standing 5' 7", the logical mind knows this is wrong, the ED mind believes that this is true. As I said I am continuing my battle and intend to win !

[Hidden in reply to Frankie24]

Way to go! If you need cheerleaders let me know and I'll put a squad together. Have you spoken to any non-nutritionists who are familiar with ED's about a meal plan that won't put your health at odds with the CKD? I've only had to deal with 2 illnesses, CKD and Hypertension, and make a choice between medications. That wasn't easy and I've managed to do it while putting together a Care Team and will work with me and have everyone pulling (and sometimes pushing) in the same direction. Eating is such a huge part of a daily life and routine that you have to find the balance. Have you learned anything to help you, even sporadically, overcome the situation you are in? I imagine if you could share anything that has worked for you it could be very helpful to others here in the community.