NCGS/Celiac disease

[6821green]

Hello, I am looking for anyone who has developed NCGS or Celiac disease since having kidney transplant. I am three years post-transplant and have been suffering GI side effects since 6 months post-surgery. The immunosuppressants I have been taking are Tacrolimus and Myfortic. The transplant center finally honored my request to switch to Myfortic last July after repeated requests to change from Mycophenolate Motifil. However, the switch has not made much of a difference. The abdominal pain I experience mostly post-eating has affected my quality of life. My post-transplant team has kept telling me to see local providers. After trying the elimination diet twice, and consulting with my long-time general physician and local nephrologist, I finally have been referred to a GI specialist. I would appreciate any insight or information from anyone who has suffered from the GI side effects of these drugs listed above and what medical advice, remedies. or diets helped relieve your symptoms. Thank you.

[blackkat2]

Hi. Yes, lots of GI issues since transplant (among others). I'm also on tacro & mycophenolate sodium. I take digestive aid called Zenpep with meals. (Have also used Creon. Same thing I think, but currently unavailable in my area.) Sometimes these help, sometimes not. I work with a gastroenterologist. Did lots of tests, says he'll be better able to make a more exact diagnosis after a colonoscopy.

[6821green in reply to blackkat2]

Thank you so much for your helpful reply. I will certainly check out the Zenpep. I appreciate you taking the time to share your experience with me. It is wonderful to have the support of people who have shared experiences. The medical teams, both doctors and nurses, have not been any help to me on this front. Hopefully, the GI appointment will lead to some answers.

[Parkerbarker]

My gi issues were horrendous.There is 2 kinds of mycrophenolate and one is less harsh on gi. I was also switched from tacro to belacept as tacro was toxic to me .Belacept once a month and basically zero side effects and i get side effects from everything! Yes the first few months I thought I would die,couldnt leave a toilet area for longer then 15 minutes or would shit myself. Awful! I also started taking loprimide and buscopan for the diarrhea and bad spasming and guts cramps.Those two meds saved me as those idiots drs are just like suck it up.I consult with pharmacist more! I had ibs before transplant so really irritated that.2 years in im now on sicrolimous,belacept and pred which is waaay easier on gut and only attacks i get now is from my ibs but i do take my loprimide on bad days.I really feel for you.

[6821green in reply to Parkerbarker]

I am really sorry to hear you have had such a rough road post-transplant, but it is comforting you finally are on a regimen of meds that have eased part of your suffering. I can really relate to your honesty about doctors, as my kidneys were irreversibly damaged by 2 doctors' failure to test for renal function while taking a prescribed medication for 20 years. Yes, that boat has sailed, but it very hard for me to trust the medical field. I am constantly and exhaustively researching and educating myself on every drug, test, and procedures that are ordered. My questioning with boldness has put me in some very interesting conversations with docs and nurses, but I refuse to be a lemming when it comes to my health care! One question for you....how long did it take your transplant team to recognize your desperate need for the change in immunosuppressant treatment? Thank you for your empathy and the support! Best of luck to you.

[Parkerbarker in reply to 6821green]

With the tacro i kept telling them everytime my dose went up my creatinine did too and when down my creatinine went down, i tracked my blood/trough levels very close.They kept saying " oh you need to be on at least 10 mg dose when anything over 6 was spiking my creatinine,finally when my creatinine jumped really high dr ordered a biopsy and found tacro had damaged my new kidney 20% so finally switched me to belatacept but that took 6 months.idiots.I took research and stuff and there has been so many misteps by my transplant team I have zero faith in them anymore.

[6821green in reply to Parkerbarker]

Oh, this is just awful! I am sorry your team was not hearing you, either. The damage to your kidney is unacceptable by any standards, especially since you were so on top of things. This is probably the most frustrating part of going through a transplant. None of us thought the journey would be easy, but when the people who are supposed to be the experts are not doing their jobs of educating patients on drug side effects, interactions, etc. and neglect giving timely and proper education, it is a miracle we are able to survive as well as we do. This site has given me more support, suggestions, and encouragement than anything shared by my transplant team! We still forge on being grateful for the gift of life and try to tackle the challenges that each day can bring. P.S. I am hoping to get back into the total care of my local nephrologist( who is a wonderful, top-notch physician) soon. It is strange how the transplant centers will hold you hostage for prescriptions and testing forever.

[Jamok]

Sorry you are going through this! What specifically are your Gi symptoms? Which side is your kidney on? I have been struggling with GI issues since the first few days after my transplant. I had a history of IBS-D and LEFT sided diverticula prior to transplant which was noted on my pre-transplant abdominal CT. I assumed kidney would be placed on the right because of this. But when I woke up and saw that my incision was on the left, I was shocked. I truly think having my damaged colon retracted and moved around has contributed to the horrendous cramping that I had the first months after transplant and I did not suffer from diarrhea but the opposite! So now I had IBS-D. The bloating, cramps, bloody mucus and spasm bouts would last for weeks at a time with no obvious trigger. I lost significant weight. The switch from generic to myfortic seemed to help but the cramping returned with a vengeance. After almost six months of this, I was switched from Myfortic to Sirolimus and that has helped lessen the severity. I had a normal colonoscopy in March and negative for celiac. But the G.I. issues continue. It’s the same pattern, a feeling of bloatedness after a meal then a day or two of a sore stomach. Then the actual cramping a few more days of this goes back to the tender stomach Then I feel OK for a few days, and the whole thing starts up again. Holding on the baby aspirin did help with some mucus and recently they told me to hold on the Bactrim prophylactic antibiotic. My last bout I got the full stomach and it was sore but I didn’t get the green apple cramps so that’s progress! My Transplant Center keeps telling me Envarsus(tacro) does not cause G.I. issues so it can’t be that but it’s listed as a side effect. And they have the same attitude like suck it up buttercup. BTW, I read capsaicin which is in peppers can cause a colitis like reaction when combined with tacro, so I avoid all chili spice as well as peppers. I take 4mg Envarsus and 2.5 Sirolimus 1x per day. My envarsus level still spikes sometimes and I wonder if that could be a trigger.

[lorabella]

Yes! That's my biggest post transplant complaint! Constant diarrhea and pain after eating. I was referred to a GI specialist and am having a colonoscopy scheduled. Using Benefiber for a few days now, but haven't noticed any difference yet. Will keep you posted....