Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac Disease And Kidney Transplants


teeterbabe

Recommended Posts

teeterbabe Newbie

Hello, I am writing to see if there is anyone out there with celiac disease that has had a kidney transplant. My dad has celiac and they are considering a kidney transplant. I am wondering if there are some things to look out for. My mom is a nurse and would like to know more about someones experience. Thanks


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



RiceAddict Rookie

Unfortunately, you probably won't get many responces to your query.

Fortunately, you will get at least one. I am awaiting a kidney transplant, but I am not on dialysis. I was diagnosed with the kidney disease in March of last year and my function wsa tested at 22%. I was evaluated for transplant and put on the waiting list in August. I was diagnosed with celiac in November. In january I began feeling the wonderful effects of a gluten-free lifestyle. At the end of Jan I had another kidney function test and was at 26%. The Dr was totally stunned that I had actually improved a little. Plus I felt like a million bucks. So for me, going gluten-free helped a bunch in both the lab tests and in overall well being.

Are you looking for help with the diets, is that it? I'm happy to talk anytime about anything I can. There are a few others on this list with kidney issues but none that I know of who require a transplant or dialysis.

blueeyedmanda Community Regular

Rice- that is good to hear that you are improving. I hope you continue to have great updates for us.

I am sorry I couldn't help answer the actual question.

  • 10 months later...
franky Newbie
Unfortunately, you probably won't get many responces to your query.

Fortunately, you will get at least one. I am awaiting a kidney transplant, but I am not on dialysis. I was diagnosed with the kidney disease in March of last year and my function wsa tested at 22%. I was evaluated for transplant and put on the waiting list in August. I was diagnosed with celiac in November. In january I began feeling the wonderful effects of a gluten-free lifestyle. At the end of Jan I had another kidney function test and was at 26%. The Dr was totally stunned that I had actually improved a little. Plus I felt like a million bucks. So for me, going gluten-free helped a bunch in both the lab tests and in overall well being.

Are you looking for help with the diets, is that it? I'm happy to talk anytime about anything I can. There are a few others on this list with kidney issues but none that I know of who require a transplant or dialysis.

Rice - Fascinating to hear your story, and I do hope you have continued to improve over the past year. My wife has had kidney dysfunction for a decade with gfr (globular filtration rate) now down to the 25-30%. Her nephrologists have been saying she will eventually need a kidney transplant (3-10 years). In early January she was diagnosed as gluten intolerant and is now following a gluten free diet.

The nephrologists seem to know little about celiac disease and discount any connection to kidney deterioration. Have your kidney filtration numbers stabilized, or hopefully improved, since last March? Anything else you have learned about the interaction between these two problems.

Thanks much.

YoloGx Rookie
Rice - Fascinating to hear your story, and I do hope you have continued to improve over the past year. My wife has had kidney dysfunction for a decade with gfr (globular filtration rate) now down to the 25-30%. Her nephrologists have been saying she will eventually need a kidney transplant (3-10 years). In early January she was diagnosed as gluten intolerant and is now following a gluten free diet.

The nephrologists seem to know little about celiac disease and discount any connection to kidney deterioration. Have your kidney filtration numbers stabilized, or hopefully improved, since last March? Anything else you have learned about the interaction between these two problems.

Thanks much.

Oh wow. Dear Franky, in regards to your wife's condition--as I have written to Gluten Wrangler elsewhere, I was rapidly losing my kidneys when I was 23 years old. In less than a year I lost 1/2 of my right kidney to pyeloneprhitus. This is a condition that is rampant apparently both on my Mom's side and my Dad's side. My father in fact died from kidney disease as did his brother and his mother. All of them went on dialysis.

My mothers mom however was clued in by her homeopathic doctor from England to change her diet--and her inflammation and spontaneeous infections stopped. She lived to be over 100! It obviously worked for her as it did years later on for me!!

I am now 58 without major kidney problems (apart from the old scar tissue which may be lessened by now) since I figured out I needed to go off citrus and wheat, rye, oats etc. etc. after my grandmother suggested diet might help. I still get kidney inflammation if I go off my non gluten, non sugar, non alcohol etc. diet or if I am under a lot of stress or am exposed to gluten or harsh chemicals. When I get the inflammation, I take the herbs and the inflammation always goes away almost immediately.

That's it--the inflammation is first, the infection second!! It seems celiac disease can cause this in suceptible individuals. Try reading Dangerous Grains by Dr. James Braly and Ron Hoggan for general research references on this and other conditions as well as more understanding of celiac in general.

My docs wanted me on antibiotics forever but they weren't helping me esp. since the antibiotics made my ears ring and my mind feel like I was on something strange. I found instead that herbs helped me substantially--and really in many ways saved my life. Please check out my past posts on this subject. Uva Ursi, Marshmallow Root, Dandelion Root, Yellow Dock etc. Its major stuff. You can Google info on this on the net. If you want to know more please ask and I will try to help.

I just hope its not too late.

Along that line, I suggest looking into nattokinase and bromelain/papain combo to get rid of scar tissue. They have been well researched as fibronylitic agents. I have found the combo to be effective personally for this and other scar tissue issues as well as clearing out blood vessel plaque etc. Don't take however if you are taking coumadin etc. or are a bleeder.

Yolo

Welda Johnson Newbie

My mom had a kidney transplant in 1971, but I don't know if I got Celiac from her. Stephen CujoCaro or whatever his name is has written a book about his two transplants that would probably be helpful.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,023
    • Most Online (within 30 mins)
      7,748

    Tubbybooboo
    Newest Member
    Tubbybooboo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.