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I would like to hear from Celiacs with Chronic Kidney Disease. Recently there has been more research of a correlation between the two. I was recently diagnosed. I have been able to find a little information on a combined renal and gluten free diet. What I have not discovered yet is the comparison of gluten free flours and wheat flour in terms of phosphorus content levels.

 

Here is a synopsis of my sudden diagnosis. I hope it helps someone else, as well as finding someone to support me.

 

About a year ago the night sweats unrelated to menopause started, I began to notice an extremely dry mouth (worse than ever before) and as time went on I had a constant bad taste in my mouth. Additionally I noticed my blood pressure levels became erratic. I reported all of this to my three specialists and one primary doctor, the last of which was doing a CBC every three months. In September my primary care referred me to a nephrologist due to abnormal creatinine levels in my blood, although my urine had no negative test results. Days after I met the nephrologist he put me in the hospital with a diagnosis of Stage 5 (End Stage) Renal Failure. When I left a week later they had gotten it down to Stage 4. Since then I've had a kidney biopsy. My kidneys are permanently damaged due to scarring with 50% functioning. There is no known reason for this. Tests prior to January of 2013 showed no creatinine disfunction. My nephrologist told me there is growing research showing a correlation between Chronic Kidney Disease and Celiac Disease. Given my situation, I suggest you have your creatinine levels tested and GFR calculated. Request that you be followed carefully and frequently if your creatinine is lower than 95. 11 months ago mine was 90 and my physician did not note it until it dropped to 40. I don't know if he or I had known this sooner my kidney disease perhaps would not be at Stage 4 now. This means I must go on dialysis and will need a transplant eventually.

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Hi Aleka,

I'm not diagnosed with CKD (yet), however I've been coming back to this forum (I've been one of the major contributing members here 9 years ago) for the last week and lurking around for more information on what my new problem is. I've also been doing my own research for about a little more than a month now, because the dark circles under my eyes kept bothering me. In addition to that 2 years ago i started getting a dull pain in my right lower back, where the kidney is supposed to be and when I drank, it disappeared. Sometimes I didn't notice it for weeks or months and then it came back again and it always disappeared with drinking some fluid. The only exception, milk seemed to aggravate it. I found an article about a month ago that said, that a dairy allergy (not a lactose intolerance, a dairy allergy... there is a difference) can cause the kidneys to have major problems in certain people in addition to dark rings under the eyes, so I thought to myself. Hm, that could be me, so let's do a challenge, which I did. I haven't had any dairy in addition to no gluten for about 3 weeks. Then I drank a cup of hot cocoa and ate a Nutella bread and wouldn't you think, the kidney pain came back. Not only that, but this time it stayed, even though I am now again not having any dairy. It gets better with more drinking, but it seems that the intervals between it disappearing and coming back get shorter. And for the first time tonight (that's why I'm up) I can feel it a little, so I came here and that's when I saw your article and now I'm wondering, if I may have this, too?

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Hi Aleka,

 

I don't have kidney issues but there have been several posters here that had them.  It's been a while but if you use the search tool you can probably find threads by them.

 

Hi Stef,

 

Welcome back to the forum! :)

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Very interesting!! I was also curious if there was a connection.  My doctors have ruled out celiac so I'm guessing I have ncgs.  I'm pretty sure I've had this for at least the last 10 years or so.  Two years ago I found out at 26 weeks pregnant that my son had a multi cystic kidney.  There is no more blood flow to it and it is non functioning but his other one is great.  This last summer when I started getting really sick I was having sharp shooting back pains in the kidney area.  They were pretty random and didn't last very long.  But went away after going gluten free.  None of my blood work had ever indicated anything abnormal.

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On 12/10/2013 at 5:04 PM, Aleka Munroe said:

I would like to hear from Celiacs with Chronic Kidney Disease. Recently there has been more research of a correlation between the two. I was recently diagnosed. I have been able to find a little information on a combined renal and gluten free diet. What I have not discovered yet is the comparison of gluten free flours and wheat flour in terms of phosphorus content levels.

 

Here is a synopsis of my sudden diagnosis. I hope it helps someone else, as well as finding someone to support me.

 

About a year ago the night sweats unrelated to menopause started, I began to notice an extremely dry mouth (worse than ever before) and as time went on I had a constant bad taste in my mouth. Additionally I noticed my blood pressure levels became erratic. I reported all of this to my three specialists and one primary doctor, the last of which was doing a CBC every three months. In September my primary care referred me to a nephrologist due to abnormal creatinine levels in my blood, although my urine had no negative test results. Days after I met the nephrologist he put me in the hospital with a diagnosis of Stage 5 (End Stage) Renal Failure. When I left a week later they had gotten it down to Stage 4. Since then I've had a kidney biopsy. My kidneys are permanently damaged due to scarring with 50% functioning. There is no known reason for this. Tests prior to January of 2013 showed no creatinine disfunction. My nephrologist told me there is growing research showing a correlation between Chronic Kidney Disease and Celiac Disease. Given my situation, I suggest you have your creatinine levels tested and GFR calculated. Request that you be followed carefully and frequently if your creatinine is lower than 95. 11 months ago mine was 90 and my physician did not note it until it dropped to 40. I don't know if he or I had known this sooner my kidney disease perhaps would not be at Stage 4 now. This means I must go on dialysis and will need a transplant eventually.

I have both CKD and celiac disease with the former misdiagnosed as a non progressive benign condition when I was 25    A much later kidney biopsy resulted in the diagnosis of IgA nephropathy) and the latter 15 years later just after I had given birth.  Recently I slipped into Stage 4 after many years in Stage 3. (I am 68 years old) I have been placed on a very restrictive diet (esp protein, potassium, and sodium ) and as a result have lost 7.5 pounds in last month.  However, I am also a fairly serious cyclist and I do other exercise regularly. I am finding I have a lot more intense joint and muscle pain so I suspect I have been too radical in my diet and am not getting enough calories.   (I am at least 30 pounds overweight).  I feel better than pre-diet though and would like to lose some more weight.   Am staring dialysis down at the moment and very scared. (Haven’t been placed on dialysis yet)  my celiac is well-controlled.  Here’s my problem:   It is hellishly hard to find good recipes that are both safe for gluten-free and CKD.   Anybody have any good tips?   I’m soon going to be reduced to eating dirt and grass.  :(.   Thanks for listening.  Gay

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I think they say dirt and grass is fine with ketchup!  :)  But I wouldn't know since I don't eat nightshades anymore.  I am sorry you are having a problem with your kidneys.   Normally for celiac we recommend a whole foods diet with meats, veggies, nuts, and eggs.  No processed foods (baked goods etc) and no oats or dairy to start out for a few months at least.  But I think they say to limit proteins like meats for kidney problems.

So how long have you been gluten-free?  Celiac disease is an AI (auto-immune) condition and people with one AI condition are more susceptible to getting another AI condition.

You may want to back off exercise some as that might be hard on the kidneys also.  I know that's not much help, sorry.

I hope you get well and feel better soon.  You might want to stop nightshades and see if it helps.  Nightshades are tomatoes, potatoes, peppers and eggplant.  They all contain alkaloids that are hard for our bodies to process.

Edited by GFinDC

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On 7/8/2018 at 6:41 PM, Celiacgay said:

I have both CKD and celiac disease with the former misdiagnosed as a non progressive benign condition when I was 25    A much later kidney biopsy resulted in the diagnosis of IgA nephropathy) and the latter 15 years later just after I had given birth.  Recently I slipped into Stage 4 after many years in Stage 3.

 

On 7/8/2018 at 6:41 PM, Celiacgay said:

However, I am also a fairly serious cyclist and I do other exercise regularly. I am finding I have a lot more intense joint and muscle pain

Celiacgay,

Ennis_tx is good about foods for you to eat that will help you with your nutrition.

But if you want some supplement advise and we say this a lot (Ennis_Tx) and I try a B-complex and Magnesium as either Magnesium Citrate or Magnesium Glycinate with each meal (works for most people) or twice a day if that is not convenient.

The muscle pain (cramps if this is the pain your are describing) by taking Magnesium Citrate to relax your muscles and relieve cramping.

The B-complex can help your CKD issues.

Here is couple links about how both the B1 and B3 Vitamins can help CKD patients.

https://www.sciencedirect.com/science/article/pii/S0272638615000207

https://www.sciencedaily.com/releases/2008/12/081208092149.htm

Also take you some Vitamin D.  Low Vitamin D levels have linked to early Kidney disease and might explain why your CKD has advanced over time.

https://www.kidney.org/news/newsroom/nr/Low-Vitamin-D-Levels-Linked-to-Early-Signs-of-KD

Knitty Kitty talks a lot about Vitamin D on this board with good reason.

Both these supplements/B-Vitamins and Vitamin D have been shown to help or slow CKD development.

And why a B-complex could work well together with the Magnesium for muscle cramps and low Vitamin D that could explain your early stage of Chronic Kidney Disease.

All these Vitamins/Minerals can get low when we are Celiac's.

Here is a great research article that explains how Vitamin D and Magnesium works synergistically entitled "The Importance of Magnesium in Clinical Healthcare"

But I will pull out  a few tidbits so you don't have to read it (unless you want to understand it for yourself).

Research can be a tad technical for most people.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5637834/

concerning Vitamin D and Magnesium and how they effect each other.

quoting there section on Ricketts commonly seen in children or (Low Vitamin D in children as we often think about it) but Low Vitamin D happens often in Adults too!  And why Knitty Kitty tries to share the gospel of Vitamins and how Vitamin D helped her. But Magnesium helps many other areas of the body as well.

quoting

"Magnesium is required for conversion of vitamin D into its active form which, in turn, supports calcium absorption and metabolism, as well as normal parathyroid hormone function [38]. Vitamin D sufficiency may then increase absorption of calcium and Mg by as much as 300% [26]. Rickets with hypomagnesaemia will not respond to massive doses of vitamin D (referred to as “vitamin D-resistant Rickets”). It is thus suggested that serum Mg levels be drawn in patients with Rickets and that Mg supplementation be considered in all such cases"

Here is what they say about magnesium and kidney stones.

3.3.11. Magnesium and Renal Calculi (LOE = B) (Kidney Stones)

"Mg intake with meals is well recognized to bind consumed oxalates in the intestinal tract, thus diminishing oxalate absorption and accrual within the body. As most kidney stones are made up of calcium oxalate, diminution of oxalate content in the body has been found to diminish the risk of stone formation. The use of potassium citrate 1500 mg and Mg citrate 250 mg daily reduced the number of calcium oxalate stones in 64 patients compared to placebo by an impressive 85% over a 3-year period [86]. Further research is required to more adequately study the impact of Mg sufficiency on renal calculi."

But with Magnesium (as with any supplement) you should not ever go overboard because there is a happy medium.  But generally speaking most people are low in Magnesium and don't even know.

Muscle cramps are a common complaint of being low in Magnesium.

Being low in stomach acid can also trigger you to be low in Magnesium.

The FDA issued a warning about how taking PPIs can cause someone's acid to be too low to absorb Magnesium.

And why we know (I believe) if you find yourself low in these Vitamins and Minerals (Magnesium, B-complex, and Vitamin D) your stomach acid is no longer strong enough to dissolve your nutrients so your Small Intestines can then absorb them.

I hope this is helpful.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

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I am recently diagnosed with Celiac and I have CKD.  CKD is due to the Celiac.  High blood pressure, failing kidneys, damaged liver, severe anemia all due to Celiac.  It was my relentless nephrologist that pushed for finding an answer that lead us to a pathologist that luckily specializes in Celiac that pointed us in the right direction.  To gain weight and to boost my albumin levels (1.5; I have lots of fluid on my body due to the low level), I need protein but it is hard on my kidneys and it is a constant, difficult balancing act.  Going gluten-free has helped with the diarrhea, energy levels a bit, the severe abdominal pain and complete brain fuzz but so much damage has been done that it is going to be a very long road to healing.  I am supremely hopeful and thankful for all the support and research that is out there.  There is still a LOT to be learned in how this disease affects the many organs of the body.  

-EAMudd

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