Nephrotic Syndrome/minimal Change Disease

[Jnkmnky]

[lonewolf]

When I looked it up, I saw lupus, rheumatoid factors and other auto immune disorders associated with it and was wondering if anyone with celiac disease knows of it, has it, or experienced relief going gluten free.

I actually have Minimal Change Disease. I don't know a lot about research that links it with Celiac, but I know from my experience that Gluten Free helps me. It's uncommon for adults to get it (I was diagnosed at age 39) and they usually have a hard time staying in remission. It's a disease that goes through periods of remission and relapse. I realized that there was a link between the MCD and gluten when I tried adding spelt back in my diet (before suspecting I had gluten intolerance) and I started to relapse. Off the spelt and into remission. I've been in remission for almost 2 years now - longer than the nephrologist said any adult he has treated has been. He thinks I'm crazy to even think that my diet affects it, except for sodium intake, so I haven't bothered to go see him for a year and a half. I'm actually worried that something is up now, my legs are swelling, but I've been eating way too much salt and was glutened last night at a family party. I've also been suspecting that eggs bother my kidneys too. (I usually avoid these, but get a little once in a while.)

You've probably realized that most information you find online about MCD is really hard to understand unless you're a doctor. There are some people who have realized that their children do better on a restricted diet and you can find some information online. I'll try to find some of the websites that I used to frequent and post them. Feel free to PM me. The prednisone that the little girl must be taking is horrible on anyone. My heart goes out to her.

Liz

[SurreyGirl]

... If anyone else knows something about it, or can comprehend a link to the two diseases, please let me know. Also, if you know of a more simple site that would explain a link-- point me in the direction...

Hi Jnkmnky

I have persistent hematuria and I have given up on trying to get to the bottom of it. It has decreased since on gluten-free diet, so I am leaving it at that for now. From symptoms around my blood family, I suspect I have gluten intolerance rather than celiac - although I haven't been tested.

Have you see Loren Cordain's article "cereal grains, a double edged sword"? It talks about gluten, but also nephropathy and other gluten-related conditions, not only celiac. You will need to copy this link into your browser or it might not work:

Open Original Shared Link

PS. Thank you for the antiinflamatory spices tips - I have added them to our diet (always loved cinnamon, but increased turmeric and others as well now).

[Jnkmnky]

[lonewolf]

I just happened to see that at least one guest has been looking at this topic tonight. If you have any questions about MCD, please post it or PM me.

[ravenwoodglass]

I had never heard of this but since when I get glutened I do seem to have kidney related problems and prediagnosis a great deal of edema I thought I would look it up.

I found this passage from the link below to be quite interesting, the bold was done by me.

"Causes

Minimal change disease can be associated with food allergies, medications, or hematologic malignancies, or it can occur idiopathically. The pathology does not appear to involve complement, immunoglobulins, or immune complex deposition. Rather, an altered cell-mediated immunologic response with abnormal secretion of lymphokines by T cells is thought to reduce the production of anions in the glomerular basement membrane, thereby increasing the glomerular permeability to plasma albumin through a reduction of electrostatic repulsion.[2] The loss of anionic charges is also thought to favor foot process fusion. With minimal change disease the kidney tissue appears normal under a light microscope, but shows podocyte foot process effacement under an electron microscope.[1]"

Open Original Shared Link

[UR Groovy]

I have minimal change disease.

I was dx'd about 4 yrs ago, but when I looked back in my med records, I realized I had it as a kid. I've been gluten free for a few months now, and it seems to be a major factor. I was working on an educated hunch, and after eliminating wheat/gluten, dairy, and everything else that was a possible allergen, I noticed some serious changes.

We (Celiacs & ppl with nephrotic syndrome) have a lot in common. I think it's just a different manifestation of the same problem at this point.

One really telling connection is this:

Most children grow out of childhood allergies.

Most children grow out of nephrotic syndrome.

I'm not a dr., but I believe this is basically it: Nephrotic syndrome is a condition wherein the kidneys don't filter the blood correctly due to glomerular leaks (this is the membrane responsible for blood filtration). Blood particles, protein (albumin), and / or fats are leaked through the membranes into the urine along with the stuff they're supposed to filter - like toxins. The results are low blood levels of albumin (this is the clear portion of the blood plasma , and one of the things it does is helps moderate fluid retention). Some of the things that happen to people with this is End Stage Renal Failure, Cardiac Failure (because of unusually high cholesterol - mine was up to 575 total cholesterol last year and at last test, down to 300), Swelling of the eyelids, ankles, and other areas (hmmmm ... sounds strangely like allergy, no?), High Blood Pressure, various kinds of Atopic Dermatitis.

I don't know that going gluten free will cure me, but I'm convinced that it's a large piece of the puzzle. Lonewolf has been at this longer, and is actually in remission. I think that it'll take a while for the kidneys to heal, but I'm quite sure that this is something worth doing. The dermatitis on my hands and feet have gone away, and I've had that all my life. I know I have a problem with wheat gluten for sure. When I re-introduced it in December, I thought I would die. I definitely won't do that again ! Take care all !

[UR Groovy]

Why can't I read your posts? All I see is a face.

[lonewolf]

Why can't I read your posts? All I see is a face.

Fajitas - this person was "banned" from the list. Apparently she removed most of her posts or they were removed for her. (You only get banned if you're persistently rude or refuse to follow the forum rules. It doesn't happen too often.)

[UR Groovy]

Fajitas - this person was "banned" from the list. Apparently she removed most of her posts or they were removed for her. (You only get banned if you're persistently rude or refuse to follow the forum rules. It doesn't happen too often.)

Thanks

Liz, do you mind if I pm you - I have a couple questions maybe you can help me with?

[lonewolf]

Thanks

Liz, do you mind if I pm you - I have a couple questions maybe you can help me with?

No problem - I'll be at my computer for a little while this morning before taking off for the day.

[UR Groovy]

I have never seen the post that started this thread, so I don't know what was said. So here's 2 more cents: I saw mention of Lupus. Thought I'd mention that in my case, there is no other disease that has been associated with it. They say it's 'idiopathic' (meaning they can't give a reason why I have it). I don't believe in idiopathic disease & never have. It's ironic that I have one. That's why I started checkiing out any and all possibilities - food allergies seemed to fit.

I believe that Minimal Change means that there is no schlerosis upon biopsy (glomerular basement ...) and therefore, a disease called FSGS (which some say is just minimal change progressed - it's been debated) doesn't fit the bill as far as they can tell from biopsy. The cells have abnormalities, but not schlerosis - that's fairly good news.

What Celiac has in common with it:

The Big 'D'

Dermatitis herpetiformis and other types

Digestive & malabsorbtion issues

Anxiety & depression

Some other stuff that I can't think of right now.

All of these things have resolved for me (I have to assume that my malabsorbtion issues are less, because I no longer get dizzy & my energy and my ability to think clearly are great). I am, however, still spilling protein - but it's a lot less. I think that in addition to wheat (gluten), dairy should be eliminated too - and whatever else ... For what it's worth, anyway.

[Fiddle-Faddle]

Wow, this is very interesting. Do you think Minimal Change and celiac with DH are one and the same?

And I always wondered what happened to jnkmnky, I learned so much from her. I didn't know she'd been banned.

[lonewolf]

Wow, this is very interesting. Do you think Minimal Change and celiac with DH are one and the same?

I think that Minimal Change Disease and Celiac are different manifestations of gluten intolerance. Fajitas is the only other person I've ever met or corresponded with that discovered that diet changes affected her MCD, but I'll bet that going gluten-free would help everyone with MCD.

[UR Groovy]

Wow, this is very interesting. Do you think Minimal Change and celiac with DH are one and the same?

Not the same disease, but with similar roots

[2kids4me]

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

[VioletBlue]

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.

[UR Groovy]

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.

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

[RiceAddict]

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.

[lonewolf]

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.

[VioletBlue]

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.

[lonewolf]

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 . 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.

[UR Groovy]

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' - 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

[UR Groovy]

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.

[VioletBlue]

Isn't the kidney biopsy fun . 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.