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Correlation Between Celiac Disease And Chronic Kidney Disease (Ckd)
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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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    • What?  Wine that contains  milk?  That is new to me.   You know that there are about 300 symptoms for celiac disease and you do not have to have intestinal issues.  You do not even have to have ANY symptoms (aka silent celiac).  I think you need to wait for your endoscopy.  When is it scheduled?  I assume it is not for months and that you will be expected to consume gluten daily for 2 to 4 weeks (called a gluten challenge) prior to the endoscopy.  Because you have to be on a gluten-containing diet to get results (see University of Chicago's celiac website).   Celiacs can have many intolerances that can resolve once the body heals.   I would be worried about getting a proper diagnosis.  Did your doctor advise you to go gluten free prior to the completion of all testing?  
    • Ah, more information trickles in...... There are a few things that may elevate a Ttg igA result: 1)  celiac disease, 2) Lyme disease, 3) another autoimmune disorder.  Someone recently posted during the Last month who had a very elevated TTg but ended up not having celiac disease.  Instead he was diagnosed with Lyme disease.  My memory could be wrong, so do the research.   The bottom line is that further research by a GI is recommended.   Celiac antibody results do not always correlate with the severity of intestinal damage in someone with celiac disease.  That is why an endoscopy/biopsies is still the gold standard for diagnosis.  Europe is opting to avoid the endoscopy in small children, but not the US.   Her IgG Celiacs tests were negative, so he is checking for a wheat allergy?    
    • Awok, Welcome to the forum.  Have you considered trace gluten?  Here is a study on the topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf It could explain why you felt good for a while.  I personally was glutened badly last summer.  I have no idea what got me.  I suspect either a prescription medication or one gluten free product (not certified).  I ended up on a whole foods diet and avoided even certified processed gluten-free foods including grains until I was healed (three to six months).  
    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
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