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Member Since 06 Oct 2013
Offline Last Active Oct 07 2013 04:47 PM

Posts I've Made

In Topic: Hello All From Ohio

06 October 2013 - 05:09 PM

When I was hospitilized in August they ran a ridiculous amount of test, daily blood tests, usually around 4-6 a day, experimented with meds, tested for all pathogens, viruses, infections including CDIFF and CMV, also did a full colonoscopy and took tissue samples. Literally everything came back negative. All the docs were are very confused and only keep coming back to "it must be the meds."


The kidney surgery is my first major major surgery, but I did have three other minor surgeries prior to this. They do say that I am certainly inflamed from the constant bowel movements, etc, and could take much longer to fully heal once the cause is determined.


Regardless, until a definitive answer is know, the gluten-free diet works for me and is my best option.

In Topic: Hello All From Ohio

06 October 2013 - 04:47 PM

Glad you are doing better post-transplant and I think you are courageous and a warrior!


But honestly, I suggest asking for a celiac panel...  pronto, before you continue on the gluten-free diet.


Continue to eat gluten for this test so it is valid. Make sure celiac is what you are dealing with, so you have proper follow up care.


Is kidney disease associated with celiac? yes! But it is not the only reason why is can develop and I would hate to see you go G F if you do not need to.


And to get any benefit from the G F diet--if it is a health issue?--well, you need to be 100% G F, not just experimenting. Ok? Okay!


Best wishes.... and let us know what happens.!

Good health to you. (and P.S.... your sister is an angel)  :) but you already know this. 

I was going 100% gluten-free for about 2-3 weeks and found my symptoms to improve. The bloating and gas pains decreased almost totally, but not all the way. I asked the dr's to order a gluten intolerance test which they did. I was to be on a regular gluten diet for 2 weeks and then go in for blood work and possibly additional test depending on results. I could only go about 2 days of eating regular food before extreme stomach pain and watery diarreah returned. I cancelled the gluten test for now and am returning to a 100% gluten-free diet.


I was actually re-hospitilized for 10 days in the middle of august because of my stomach pains and diarreah. The obvious loss of fluids and other nutrition from the diarreah is a severe risk to my new kidney. I was discharged from the hospital with no results and no diagnosis. My drs (Kidney team, surgery team, GI team and infectious disease team) continue to feel it is associated with my daily meds. Until this is determined I've chosen to be on a gluten-free diet. Without this diet, my quaility of life was honestly better before the transplant and being on dialysis 3 times a week. It has been very frustrating.


**To add: I've never had any dietary issues or needs prior to my transplant. Even during my dialysis period, I was perfectly fine eating any foods, and all grains, wheats, etc. The drs determined that my kidney disease was congenital and have shown long term scarring since childhood. I am very young for all these health issues, yet to turn 30.

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