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Celiac Disease And Kidney Transplants


teeterbabe

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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


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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.

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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