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    Do you have questions about celiac disease or the gluten-free diet?

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Got my doc's office to fax me the kindeny blood tests results, and I have not gotten to talk to doc himself yet, but theres two numbers marked:

Chloride - 99 - normal 102-110 MG/L

Creatinine - 1.3 - normal 0.5-1.0 MG/DL

Anyone with experince and these numbers? Is celiac disease related to Kindey issues?

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I too wonder about celiac disease being related to kidney issues. I haven't been able to find anything, but my dad had a kidney transplant 22 years ago. He has tons of celiac disease symptoms, but has never been tested. We're working on that one now. He has sooo many issues that I now know could be celiac disease.

Anything over 1 for creatnine is abnormal. Transplant patients have to stay under 2. If a normal person is running over 1, it usually indicate some kind of problem. My dad was 4.6 when he had his transplant. His home doctor really didn't treat him as early as he should have, though. He was 33 when it all started. He also had high blood pressure. He said you don't feel bad until it gets around 2.5-3.

BUN is another factor to watch. general rule is 12-20, but it can vary according to diet and circumstance. As long as it's under around 25, or at least 30, it's not too bad. 30 and above is unacceptable.

I called my dad to get these answers for you. Neither of us know why Chloride would be associated with kidney function.

He also said to check the WBC and hemoglobin, but they aren't as important

Good news, though! He said sometime creatinine can be lowered by diet alone. It's a very bland diet, but it kept him alive before his transplant.

Who is your doctor? Have you been checked for diabetes? Is your blood pressure normal? these are all questions my dad asked.

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Well to be fair it says "CL" on the test and I am jumping to the conclusion thats Cloride from my chemistery class memories :)

BUN was 8 with normal listed as 7-18 MG/DL so thats fiarly solid normal looking.

And here the part that I am realy confused on my CARDIOLOGIST requested the test, and I am still unclear why. My GP did a diabetas test, and it was okay a while back, last year I think.

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I'm not sure what CL is either, but my chemistry was kicking in too. I'd thought the same thing. But really, 3 points low on that kind of scale is not very much (less than 3%). The .3 on the creatnine is about 40% too high, though. I'd think that would be worth more investigation. If your BUN is low, though that is great. Both numbers tend to indicate major kidney issues. Let us know what the doc says.

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Well I am thinking I am gonna take the tests resutls with me to my GP apoitment next week see what she thinks of them since I am not schedualed to see the cardiologist again for 4 months. Either way be good to get a second set of eyes to look at it. The nurse that answered the phone said that SHE does not worry about that number (the 1.3) unless its a "factor of 3" to high. Not sure I can live with that answer with out a second opinion at least.

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I can't add anything to help understand the numbers, but I have a kidney disease (nephrotic syndrome/Minimal Change Disease) that I believe is linked with gluten intolerance. I've never been diagnosed Celiac, so I can't say there's a link there for sure. The kidney specialist told me that it's autoimmune and that diet wouldn't help at all, except for reducing salt intake. He also said "it would be a miracle" if I could stay in remission for a year without large doses of prednisone. This disease goes through periods of remission and relapse, unlike kidney failure, which is progressive. Anyway, I discovered on my own that staying totally gluten-free makes a difference. I've been in remission for over 2 years now and off the prednisone for almost 2 years. So, probably more info than you wanted to know, but, yes, I believe that gluten intolerance/Celiac Disease is linked to kidney problems.

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I've read a lot about how the liver can be affected by celiac. the liver and the kidneys are the 2 filters for the body, so it would make sense that those organs that rid the body of toxins would be affected by an overdose of toxins. For the Celiac, gluten is the toxin. I'm not a doctor, but it makes sense to me.

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Well I am thinking I am gonna take the tests resutls with me to my GP apoitment next week see what she thinks of them since I am not schedualed to see the cardiologist again for 4 months. Either way be good to get a second set of eyes to look at it. The nurse that answered the phone said that SHE does not worry about that number (the 1.3) unless its a "factor of 3" to high. Not sure I can live with that answer with out a second opinion at least.

I can assure you that Celiac Disease is related to kidney problems. I had a kidney transplant last June 1.(my beautiful daughter was my donor) I am a 61 year old female who had played tennis two months before. I knew that I was feeling tired and that playing two or three sets of tennis left me exhausted. My creatin was 10 before the transplant! We were trying to avoid dialysis, but that was impossible. I had two weeks of dialysis before my transplant. My kidneys were producing oxalates, an acid, and as calcium oxalate, the most common form of kidney stone. I never had a kidney stone in my life that I knew a bout.

The transplant was a success and the kidney is functioning well; however, I am still producing too many oxalates. They can be the result of gluten. The autoimmune response and the damage it does causes calcium malabsorpson. The calcium goes through the body so fast that it doesn't bind with the oxalates. The oxalates are absorbed rather that bound with calcuim.

I have been on a low oxalate diet and now am following a gluten=free diet as well. As a transplanted person (i was wishing for an exotic island!), I am taking many meds.....antirejection, and meds like b6, potassium citrate, tums with meals, etc. No gluten has helped me very much.......

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I can assure you that Celiac Disease is related to kidney problems. I had a kidney transplant last June 1.(my beautiful daughter was my donor) I am a 61 year old female who had played tennis two months before. I knew that I was feeling tired and that playing two or three sets of tennis left me exhausted. My creatin was 10 before the transplant! We were trying to avoid dialysis, but that was impossible. I had two weeks of dialysis before my transplant. My kidneys were producing oxalates, an acid, and as calcium oxalate, the most common form of kidney stone. I never had a kidney stone in my life that I knew a bout.

The transplant was a success and the kidney is functioning well; however, I am still producing too many oxalates. They can be the result of gluten. The autoimmune response and the damage it does causes calcium malabsorpson. The calcium goes through the body so fast that it doesn't bind with the oxalates. The oxalates are absorbed rather that bound with calcuim.

I have been on a low oxalate diet and now am following a gluten=free diet as well. As a transplanted person (i was wishing for an exotic island!), I am taking many meds.....antirejection, and meds like b6, potassium citrate, tums with meals, etc. No gluten has helped me very much.......

WOW!!!! I'm so excited to find you. My father had focal and segmental glomerial (SP?) nephritis From what I understand it is very unusual to find both the focal and segmental diseases in one kidney. Lucky him. <_<

He has been so sick for so long and I really think it is because of gluten. It just makes me angry to think that he might could have good health now if it had been caught. He's having a hard time even getting doctors to listen to him about celiac. He has SO MANY health issues and they just want to write everything off to the antirejection drugs. He's been on prednizone (high doses) and imuran for 22 years. It's definitately taken it's toll, but I still think gluten is a big part of his problem. He's only 56 and is basically debilitated. It's so sad because he has always been so active. See this post for details http://www.glutenfreeforum.com/index.php?showtopic=16110

Where did you get your transplant? My dad got a kidney from his sister. It's about the only thing working right after all these years! His was at the University of Alabama in Bham.

How long have you known you have Celiac?

Sorry for all the questions, just excited to possibly be finding some answers!

When did you find out about celiac?

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WOW!!!! I'm so excited to find you. My father had focal and segmental glomerial (SP?) nephritis From what I understand it is very unusual to find both the focal and segmental diseases in one kidney. Lucky him. <_<

He has been so sick for so long and I really think it is because of gluten. It just makes me angry to think that he might could have good health now if it had been caught. He's having a hard time even getting doctors to listen to him about celiac. He has SO MANY health issues and they just want to write everything off to the antirejection drugs. He's been on prednizone (high doses) and imuran for 22 years. It's definitately taken it's toll, but I still think gluten is a big part of his problem. He's only 56 and is basically debilitated. It's so sad because he has always been so active. See this post for details http://www.glutenfreeforum.com/index.php?showtopic=16110

Where did you get your transplant? My dad got a kidney from his sister. It's about the only thing working right after all these years! His was at the University of Alabama in Bham.

How long have you known you have Celiac?

Sorry for all the questions, just excited to possibly be finding some answers!

When did you find out about celiac?

I am glad to try to answer what I know! I was diag. with FSGS with my first biopsy. This all started in Mar. 05. April was testing to get ready for transplant at the U of Arkansas Med. Sciences, May was testing and then diaylis. and the transplant was June 1, 05. The team there is wonderful. I couldn[''t ask for a better one. My daughter was my donor. My creatine started back up, and by 72 hr. collections, it was determined that the oxalates were the problem. I also was sent to Dallas to a research program which tested me for 3 1/2 days for malabsorption. When I left there Feb. 20. '06, the doctor put me on the gluten free diet. It helped me so much after a week or so. I stopped having D and stomach pains. I am still being tested in this research program. I am to have a small bowel biopsy next and then back to Dallas.

I am feeling soooo much better. I played tennis last week for the first time in a year! My doctor was quick to get me in this research program after having tried many things to control the oxalates.....Dr. Sameth Abull-Ezz. He is wonderful. I wish your Dad could see him........

I am glad to try to answer what I know! I was diag. with FSGS with my first biopsy. This all started in Mar. 05. April was testing to get ready for transplant at the U of Arkansas Med. Sciences, May was testing and then diaylis. and the transplant was June 1, 05. The team there is wonderful. I couldn[''t ask for a better one. My daughter was my donor. My creatine started back up, and by 72 hr. collections, it was determined that the oxalates were the problem. I also was sent to Dallas to a research program which tested me for 3 1/2 days for malabsorption. When I left there Feb. 20. '06, the doctor put me on the gluten free diet. It helped me so much after a week or so. I stopped having D and stomach pains. I am still being tested in this research program. I am to have a small bowel biopsy next and then back to Dallas.

I am feeling soooo much better. I played tennis last week for the first time in a year! My doctor was quick to get me in this research program after having tried many things to control the oxalates.....Dr. Sameth Abull-Ezz. He is wonderful. I wish your Dad could see him........

I failed to mention that my creatine level was down from 1.9 to 1.7 in a week. I am still expecting it to continue to drop.

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I am glad to try to answer what I know! I was diag. with FSGS with my first biopsy. This all started in Mar. 05. April was testing to get ready for transplant at the U of Arkansas Med. Sciences, May was testing and then diaylis. and the transplant was June 1, 05. The team there is wonderful. I couldn[''t ask for a better one.

Sorry, off subject, but UAMS!! Awesome!!! My grandfather is currently in the VA hospital next door and he had a valve replacement at UAMS. My mom and my mom-by-heart were both nurses there many years ago. My mom-by-heart teaches psychiatric nursing there. Come to think of it, she's all over the LR tennis scene, too.

Can you tell I'm homesick? :unsure:

I hope you're getting taken care of!

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Jeanie, then in your experence, and I know your not a doc and all that, is 1.3 bad or should I not be worried?

I don't think 1.3 is much to worry about at this point. I would, however, keep close watch. I haven't read whether or not your blood pressure was elevated? Do you know? High blood pressure certainly affects your kidneys......and creatine level.

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I don't think 1.3 is much to worry about at this point. I would, however, keep close watch. I haven't read whether or not your blood pressure was elevated? Do you know? High blood pressure certainly affects your kidneys......and creatine level.

I have had BP spikes as high as 140 somthing over 98, and as low as 100/60. I am presently teaching my self to use a bp cuff/etc on my self so that I can start loging/tracking it. I believe when I get food I should not (ie gluten/etc) it causes BP to spike. But not had a high spike since november.

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Sorry, off subject, but UAMS!! Awesome!!! My grandfather is currently in the VA hospital next door and he had a valve replacement at UAMS. My mom and my mom-by-heart were both nurses there many years ago. My mom-by-heart teaches psychiatric nursing there. Come to think of it, she's all over the LR tennis scene, too.

Can you tell I'm homesick? :unsure:

I hope you're getting taken care of!

It is a very small world unless you are away from home! And thanks, I am being well cared for.....by many of the same people who care for your grandfather probably!

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Jeannie,

What is FSGS? I wish my Dad could see your doc too, bvut he's just not up to a trip like that and he's deathly afraid of flying. His kidney is doing great, it's just the rest of him that is falling apart. I wonder if they were to test a population of kidney transplant patients how many would have celiac? It would be very interesting research. I'm not sure how oxalate production might factor into my Dad's disease. I'll ask him about it tomorrow. thanks for sharing your story!

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I am taking many meds.....antirejection, and meds like b6, potassium citrate, tums with meals, etc. No gluten has helped me very much.......

Please double check your meds for gluten. Tums unless they changed recently are NOT gluten-free. Please have your pharmacist check all scripts and call the manufacturor for any OTC you are taking. You may continue to need the Tums because you are taking the Tums. Gluten is in a lot of tummy complaint OTCs, sometimes I wonder if they put it in on purpose, take their pill - get immediate relief and then the delayed gluten reaction will make you need it again in a couple days.

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What is FSGS?

I'm not Jeannie, but FSGS stands for Focal and Segmental GlomeruloSclerosis. The kidney disease I have can turn into that in some people, so I try to take really good care of myself.

I found this on a nephrology website:

Focal means that some glomeruli are affected but not others

Segmental affecting only a segment of each glomerulus that is involved

-Sclerosis scarring ...

Glomerulo- ... of the glomeruli

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I'm not Jeannie, but FSGS stands for Focal and Segmental GlomeruloSclerosis. The kidney disease I have can turn into that in some people, so I try to take really good care of myself.

I found this on a nephrology website:

Focal means that some glomeruli are affected but not others

Segmental affecting only a segment of each glomerulus that is involved

-Sclerosis scarring ...

Glomerulo- ... of the glomeruli

Thanks so much. My dad's kidney disease was both Focal and Segmental as well. I hope you are able to stay healthy. I just know that all of these health issues for my dad are connected to gluten, but getting a doctor to listen is a whole other story. We're working on that, though.

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Got my doc's office to fax me the kindeny blood tests results, and I have not gotten to talk to doc himself yet, but theres two numbers marked:

Chloride - 99 - normal 102-110 MG/L

Creatinine - 1.3 - normal 0.5-1.0 MG/DL

Anyone with experince and these numbers? Is celiac disease related to Kindey issues?

'

Welp I broght the test results to my GP today and turns out she has been tracking the kindey stuff, and this is the first time tis been high , so she ordered a retest.

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'

Welp I broght the test results to my GP today and turns out she has been tracking the kindey stuff, and this is the first time tis been high , so she ordered a retest.

Keep us posted!

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I know this string is almost four years old, but here goes! I was diagnosed with a progressive kidney disease last summer: FSGS with nephrotic syndrome. I was told there was no cause - idiopathic. I wasn't satisfied with that answer. I know there's a cause, but science hasn't caught up with it yet! Fortunately, I found Liz' story in a different area on this website; she replied to this string, too. I found her story while my nephrologist had just decided to try another medication first before putting me on Prednisone -- an ACE inhibitor which is much less radical than Prednisone.

Liz' success story convinced me to go gluten-free the same day I read her story. Lo & behold, I immediately started to improve, and within two months my nephrologist declared that I went into spontaneous full remission which is extremely rare. He asked me to stop taking the ACE inhibitor for a month to see if the gluten-free diet would keep me in remission. After one month, my numbers improved even more. I'm now off, not only the ACE inhibitor, but also no longer take the cholesterol medication and the diuretic that he had put me on.

I get more flak than I'd like to get from family & friends who think I'm on some kind of fad diet. It's important to ignore them! I'm convinced I've developed a gluten intolerance along the way, though I tested negative for celiac. Last month I was accidentally glutenized, and for two days my edema and diarhea returned. I don't need science to prove to me that gluten is a problem for me. Celiac disease affects the small intestine's filtering system and suffering is often immediately known. FSGS enflames and scars the filtering system in the kidneys and can take a long time to discover there's a problem. This connection with FSGS and other kidney diseases is not scientifically proven, but I'm open to the possibility that it may be the cause of my disease.

I believe my life has been saved because of this dietary change. Most with kidney disease aren't finding their way to this forum, and I'm trying to spread the word. My BFF has celiac disease which is why I knew about this in the first place.

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