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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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    • I havent used it, not much of a baker tbh, but this one looks good: http://alittleinsanity.com/gluten-free-pie-crust-recipe/
    • As you say, there's no test, it's diagnosed by exclusion, so there's no metrics to check to assess compliance other than anecdotal response to symptoms. Conversely, I've not seen anything that says that NCGI can resolved or be cured either.  This paper gives a good summation.  Basically, there's not much research period! That is changing though, I think there's research underway which could help give answers.
    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
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