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Nephrotic Syndrome/minimal Change Disease


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#16 2kids4me

 
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Posted 20 February 2007 - 11:19 PM

This is an interesting thread...Kathryn is under investigation for a cause for protein and bilirubin in her urine ...waiting on tests to rule out lupus but minimal change disease could fit. They ruled out autoimmune hepatitis...hmmmm

I don't believe in idiopathic disease & never have.


All that means is that lab tests have not been able to find an underlying disease or pathology to explain symptoms - it doesnt mean the person isnt sick - just that current testing cannot find a cause. Same with fever of unknown origin (FUO) ... a patient has a fever but nothing shows up on testing that can explain the cause. Medicine is not foolproof and a good doctor knows that there are problems as yet unknown.
Autoimmune disease is the most difficult of all because there are so many symptoms that "crossover".... and celiac. Lupus, MS, adrenal failure, (to name a few) often take years to diagnose because they do not have distinctive symptoms like say: diabetes or kidney disease.

We all have to be our own advocates or advocates for our children.
IMHO , my daughter gets sicker than others because of her malfunctioning immune system especially since the Kawasaki....moms on the Kawsaki board mention the same thing - their kids are never quite the same after - always have a tougher time with "routine illness" - bacterial or viral illnesses.
The body is a complex organism and much is unknown about the interplay between systems -endocrine, brain, organs and stress.....infections...

sandy
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Sandy

Type 1 diabetes - 1986
hypothyroid -1993
pernicious anemia
premature atrial beats
neuropathy
retinopathy
daughter is: age 15
central hypotonia and developmental delay
balance issues (rides an adult 3 wheel bike)
hypothyroid 1996
dermatographia - a form of angioedema 2002
celiac 2004 - by endoscopy
diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet
recovered from Kawasaki (2003)
lactose intolerant - figured out in Oct/06
Gilberts syndrome (April/07)
allergy to stinging insects
scoliosis Jan 2008
nightshade intolerance - figured out April 2008
allergy to Sulfa antibiotics

son is 13
type 1 diabetic - 2003 diagnosed on his 9th birthday
celiac - 2004 by endoscopy
lactose intolerant - figured out Nov/06

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#17 VioletBlue

 
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Posted 24 February 2007 - 06:20 PM

I was diagnosed back in 2000 through a kidney biopsy with Thin Basement Membrane Disease. I was told it was a benign condition, but that I would probably continue to pass blood cells and protein in my urine for the rest of my life. There was no "cure" and no real treatment beyond trying to keep my blood pressure stable, which it pretty much is. The doctors explained to me that the filtering tissues in my kidney's had become brittle and no longer filtered as well as they should. They couldn't offer a reason for the disease, but it is suspected that it's inherited, though neither of my parents ever had the kind of urine test results I had.

Now, it makes sense to me. It's not something that struck out of the blue. It's too early to tell, but I wouldn't be surprised if the hematuria fades altogether with time as the gluten leaves my body. I'm amazed daily how much of my life is being explained by gluten intolerance. I so wish I'd known decades ago. :blink:
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"My mother always told me, it's okay to play with a man's mind
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#18 UR Groovy

 
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Posted 24 February 2007 - 09:19 PM

Now, it makes sense to me. It's not something that struck out of the blue. It's too early to tell, but I wouldn't be surprised if the hematuria fades altogether with time as the gluten leaves my body. I'm amazed daily how much of my life is being explained by gluten intolerance. I so wish I'd known decades ago. :blink:

Hi VioletBlue,
I'm Kathy. I'd be interested to know what sort of symptoms you have, and what's changed for you since going gluten-free. Do you have Celiac? I'm not trying to pry or anything. Just very interested.
I wish I'd known decades ago also. So many anti-depressants, and unexplained physical issues. I'm interested in your progress. I went gluten-free about 2 1/2 months ago, but I've had 3 mishaps. Dx'd MCD 2003. It's pretty unreal. Wouldn't it be interesting if gluten intolerance were a major factor in these strange, rare kidney issues? I think it's very interesting.
Take care
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#19 RiceAddict

 
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Posted 24 February 2007 - 09:42 PM

I posted this in another thread a few weeks ago, don't know if it has any relevance, but if it helps someone then it's worth posting again.

Last year I was dx with stage 4 renal insufficiency (aka kidney failure) The drs were pretty sure it was linked to my diabetes (which is common) but certain things just didn't add up. They did all kinds of tests but never came up with a definite reason for the kidney to shut down. My renal function was at 22% and not expected to improve.

November I was dx with celiac, found by accident when they were looking for something else. So I went gluten-free around thanksgiving. I had a checkup with my nephrologist at the end of Jan. My renal function was at 26% (an almost unheard of improvement) and I felt like a million bucks! The dr noticed the difference right away. The biggest thing that changed was me going gluten-free The dr scratched his head and said "I wonder if the celiac had anything to do with the kidney problems?" I'm not expecting to totally recover, but I want to hold out as long as I can without dialysis or transplant.

I hope this helps in some way.
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#20 lonewolf

 
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Posted 24 February 2007 - 10:35 PM

Rice Addict and Violet Blue - thanks for sharing. I think that gluten intolerance is involved in a lot of problems/diseases that are considered incurable or idiopathic. I hope you both continue to improve.

Rice Addict - I did read your post a few weeks ago. It seems like you were having problems with the diet meshing with the kidney diet and your diabetes diet. Has that worked out okay?

If I were 20 years younger I'd go back to school to become a renal dietician or something.
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Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

#21 VioletBlue

 
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Posted 25 February 2007 - 03:32 PM

Hi VioletBlue,
I'm Kathy. I'd be interested to know what sort of symptoms you have, and what's changed for you since going gluten-free. Do you have Celiac? I'm not trying to pry or anything. Just very interested.
I wish I'd known decades ago also. So many anti-depressants, and unexplained physical issues. I'm interested in your progress. I went gluten-free about 2 1/2 months ago, but I've had 3 mishaps. Dx'd MCD 2003. It's pretty unreal. Wouldn't it be interesting if gluten intolerance were a major factor in these strange, rare kidney issues? I think it's very interesting.
Take care


It's pretty unreal all right ;) I've had symptoms of Celiac probably off and on my whole life. It seems the periods where it was most active where when I was undergoing prolonged stress of some king. About ten years ago I went through a half dozen doctors trying to find a cause for bouts of intense nausea and severe joint pain. I gave up after a year of searching and just lived with it. About seven months ago the diarrhea and gas and bloating and bouts of exhaustion had gotten to the point were it was making my life hell. Doctors again had no clue. I went to see my old family doctor on a whim who is also an allergist. He suggested I try an elimination diet. When I eliminated wheat I felt better within 24 hours. So then I read up on wheat allergies and gluten intolerance and a large bright light bulb went off in my head.

The kidney problem became evident through a urine tests that was part of a routine physical 8 years ago. All the blood tests and other tests they ran said my kidney's were functioning 100%, but the Hematuria was scary. After a year of putting them off I finally agreed to the kidney biopsy. That biopsy is why I refused the biopsy to test for Celiac, LOL. I learned my lesson the first time. I accept the positive results of the new diet and the blood tests and stool tests showing a high presence of antibodies as proof enough for me of Celiac.

I've been gluten free for well over two months. I've accidentally glutened myself a couple times, particularly when I first started. My back pain is gone. The diarrhea has stopped completely. I've always had diarrhea off and on, always. The bloating and gas have stopped and I just physically feel so much better, so much lighter and stronger. I had no idea the depression was related to Celiac Disease either. I thought that's just the way I was and would always be. But that is gone now too.
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"My mother always told me, it's okay to play with a man's mind
as long as you put it back where you got it when you're done with it."

#22 lonewolf

 
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Posted 25 February 2007 - 05:17 PM

After a year of putting them off I finally agreed to the kidney biopsy. That biopsy is why I refused the biopsy to test for Celiac, LOL.


Isn't the kidney biopsy fun :o . I try not to laugh when people on here are afraid of the endoscopy and biopsy (I've never had it, so I never say anything). It seems like a piece of cake compared to the kidney biopsy. The nephrologist, for some reason, showed me the needle - looked more like a giant turkey baster. Luckily the medication had started to kick in so I didn't completely panic. I could feel the needle go in, but it didn't really hurt. But the laying completely still for 12 hours afterward was a killer! I still don't like the word "biopsy" because the memory is still too vivid.
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Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

#23 UR Groovy

 
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Posted 25 February 2007 - 07:29 PM

Thank you VioletBlue. I appreciate you taking the time.

Sounds like we've been at this about the same amount of time. And, the biopsy - that was really an intense procedure. I remember the look on my Mom's face when she saw what Lonewolf described as the 'turkey baster' :o - she kind of gulped. I remember it seemed dark in there - but maybe that was just the Versed (the forgetting drug).
It's really nice to hear another perspective and another experience, even though I wish that nobody ever had to deal with stuff like this. It's nice to know that there may actually be an answer to this. Seems to be answering a lot of our questions.

Take Care,
Kathy

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#24 UR Groovy

 
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Posted 25 February 2007 - 08:25 PM

Sorry, I wanted to add a couple more things.

I think it's kind of funny you would say that you feel "lighter". That's what I kept saying. I couldn't explain it to anyone - I just felt lighter within a couple days of being gluten-free. Strange you would say that ... or is it?

Anyway, I'm glad you're feeling better.
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#25 VioletBlue

 
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Posted 26 February 2007 - 12:54 PM

Isn't the kidney biopsy fun :o . I try not to laugh when people on here are afraid of the endoscopy and biopsy (I've never had it, so I never say anything). It seems like a piece of cake compared to the kidney biopsy. The nephrologist, for some reason, showed me the needle - looked more like a giant turkey baster. Luckily the medication had started to kick in so I didn't completely panic. I could feel the needle go in, but it didn't really hurt. But the laying completely still for 12 hours afterward was a killer! I still don't like the word "biopsy" because the memory is still too vivid.


Wait wait wait, medication? What medication? You got drugs? Oh thats's so unfair. <_<

They used a local that was supposed to numb the pain, but the first time they inserted the needle I screamed. It was like a white hot poker going into my back. They're response "You can't really feel that, we numbed it." After some more screaming on my part they withdrew the needle and shot some more local into the area. Then there was the really bad reaction to the local several hours later. Yeah, the whole experience left quite an impression.
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"My mother always told me, it's okay to play with a man's mind
as long as you put it back where you got it when you're done with it."

#26 VioletBlue

 
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Posted 26 February 2007 - 01:04 PM

Sorry, I wanted to add a couple more things.

I think it's kind of funny you would say that you feel "lighter". That's what I kept saying. I couldn't explain it to anyone - I just felt lighter within a couple days of being gluten-free. Strange you would say that ... or is it?

Anyway, I'm glad you're feeling better.


I don't understand it either. I doubt I've dropped more than five pounds since this started, but everything just seems easier to do now. I don't feel as heavy or have as hard a time getting out of a chair or off the floor, things like that. Anything physical is easier to do now. Everything is easier now.

I'm glad we're both feeling better :D
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"My mother always told me, it's okay to play with a man's mind
as long as you put it back where you got it when you're done with it."

#27 UR Groovy

 
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Posted 26 February 2007 - 02:43 PM

Wait wait wait, medication? What medication? You got drugs? Oh thats's so unfair. <_<


Geez, you'd think they could have at least thrown a little Valium your way or something. There might be a reason you didn't have Versed - it's a little risky for some, and if you had reaction to the local, it probably would have been worse with Versed (I assume what I had was Versed - I took some basic anesthesia classes a while back for my old job). Mine was a local anesthesia too, & I was awake - just with a moderate sedative, but I could still feel it - just without anxiety. Sorry you didn't get any good meds ! And, I can't believe they told you what you could or couldn't feel - what a bunch of monkeys.
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#28 VioletBlue

 
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Posted 27 February 2007 - 02:05 PM

Geez, you'd think they could have at least thrown a little Valium your way or something. There might be a reason you didn't have Versed - it's a little risky for some, and if you had reaction to the local, it probably would have been worse with Versed (I assume what I had was Versed - I took some basic anesthesia classes a while back for my old job). Mine was a local anesthesia too, & I was awake - just with a moderate sedative, but I could still feel it - just without anxiety. Sorry you didn't get any good meds ! And, I can't believe they told you what you could or couldn't feel - what a bunch of monkeys.


It's okay, my body got even with them. B) After they positioned the needle and took the first biopsy they looked at it under the microscope and decided they didn't have enough of a sample. When they told me they were going to take another sample my body just went. I went into a cold sweat and thought I was going to throw up and I started shaking so bad I was bouncing off the table. They assumed I was going into shock. It was really too small of a room for that many people to be running into each other in a panic, LOL. Fortunately it was just the accumulated nerves and not shock. In retrospect, I bet they wished they'd given me Valium too.

Violet
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"My mother always told me, it's okay to play with a man's mind
as long as you put it back where you got it when you're done with it."




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