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I'm So Excited!

lonewolf

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lonewolf Collaborator
lonewolf
Posted

I'm on a yahoo group for people with Nephrotic Syndrome, which I have been successfully controlling with a gluten-free diet, and I post every once in a while about my success at staying in remission. Usually those posts are ignored. I tried again last week and have gotten several emails asking for more information. Several people said that they have come here to learn more. I'm so excited that a few are actually looking into it!

Something very interesting to me is that so many of them are dealing with things like hypothyroid, which is so common here too.

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blueeyedmanda Community Regular
blueeyedmanda
Posted

Now that is very cool! I bet you can really help a lot of people out with the info.

missy'smom Collaborator
missy'smom
Posted

Ok, this is a long shot question but I'll put it out there. On your kidney board is there any info about ADHD meds and their effect on the kidneys? I have a son who is ADHD but was born with only one kidney(healthy as far as we know) but I won't put him on meds until I know that it will be safe for his kidney.

marciab Enthusiast
marciab
Posted

That's great. I am a member of a couple of other boards too, CFS and WEMOVE, and I have been trying to get some of them to try going gluten free. I'm finding is soooo frustating to know how life changing a diet change can be and yet feel like no one is listening. :blink:

That's interesting that your nephrotic syndrome can be controlled by gluten. My daughter had a problem with that when she was younger. More and more she is looking like a celiac.

Any chance myeloma in the kidneys is from celiac ?

Marcia

lonewolf Collaborator
lonewolf
Posted
  • Author
Ok, this is a long shot question but I'll put it out there. On your kidney board is there any info about ADHD meds and their effect on the kidneys? I have a son who is ADHD but was born with only one kidney(healthy as far as we know) but I won't put him on meds until I know that it will be safe for his kidney.

I haven't seen anything like this on my board - it's pretty much just for support for people who have nephrotic syndrome, sorry.

missy'smom Collaborator
missy'smom
Posted

Thanks anyway. I haven't been up to doing all out research on it yet but have been keeping my eyes and ears open and throwing out questions now and then to see what comes up. I've been concentrating on getting me better first. He's basically a happy, healthy kid.

lonewolf Collaborator
lonewolf
Posted
  • Author
Thanks anyway. I haven't been up to doing all out research on it yet but have been keeping my eyes and ears open and throwing out questions now and then to see what comes up. I've been concentrating on getting me better first. He's basically a happy, healthy kid.

Is he already gluten-free? It certainly isn't a cure-all for everything, but I've read several people's stories that it has helped their children with ADHD and ADD. My son's teacher wanted him tested for ADD last year. To make a long story short, we tried a gluten-free diet, it helped and his homeroom teacher this year laughed when I told her about last year - she can't believe anyone would be concerned. But she hasn't seen him on gluten. <_<

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happygirl Collaborator
happygirl
Posted

Liz:

Another Celiac, changing the world, one person/internet forum at a time :)

RiceAddict Rookie
RiceAddict
Posted

Very interesting. I am not familiar with nephrotic syndrome so I can't comment directly to that. However, in regards to celiac and kidneys, I have stage 4 chronic renal insufficiency (aka kidney failure) and am waiting for a transplant. In November I was diagnosed with celiac, as if I needed that too. Are the two somehow related....I have no idea. But as I said, it sure is interesting.

BTW-I have been gluten-free for 2 months now and my lab work last week was a little elevated as far as the kidneys go. I had actually shown slight improvement up until I went gluten-free. So I actually had a slight drop in kidney function when I initially went on the diet. I just don't think there are enough cases to prove anything yet.

Helena Contributor
Helena
Posted

Hmmm....while I was in the midst of a gluten challenge, my blood tests suggested that my kidneys weren't doing so well. (but the test is only definitive if it is abnormal when repeated) About one month after going gluten free, my doctor reran the test and it was normal. A connection? Or a fluke?

I think my grandpa probably has celiac . . .. his kidneys are failing. Maybe the two are related.

lonewolf Collaborator
lonewolf
Posted
  • Author
Very interesting. I am not familiar with nephrotic syndrome so I can't comment directly to that. However, in regards to celiac and kidneys, I have stage 4 chronic renal insufficiency (aka kidney failure) and am waiting for a transplant. In November I was diagnosed with celiac, as if I needed that too. Are the two somehow related....I have no idea. But as I said, it sure is interesting.

BTW-I have been gluten-free for 2 months now and my lab work last week was a little elevated as far as the kidneys go. I had actually shown slight improvement up until I went gluten-free. So I actually had a slight drop in kidney function when I initially went on the diet. I just don't think there are enough cases to prove anything yet.

Nephrotic Syndrome is a different kind of kidney disease than what you have. It's an autoimmune or "idiopathic" condition where the filters in the kidneys allow protein to "leak" through into the urine. It also goes along with increased cholesterol, elevated liver enzymes, high blood pressure and a few other symptoms. I certainly wouldn't say that a gluten-free diet would "cure" every type of kidney disease, but it has helped with mine. There haven't been any official studies about the relationship between nephrotic syndrome and a gluten-free diet, but after I discovered the connection for me I've read anecdotal evidence (even from some medical journals) about nephrotic syndrome improving on a gluten-free diet. Dr. Fassano states that there isn't a correlation between Celiac and NS. I don't technically have Celiac, so I would never say there's a relationship - I just know that it's worked for me.

RiceAddict Rookie
RiceAddict
Posted

Thanks lonewolf! Good that you bring this topic to the front line. I may be spinning way out of control here, but this came off the web:

The following was taken from a lecture given by Dr. Joseph Murray in October, 1996. It was published by the Sprue-Nik Press (Published by the Tri-County Celiac Sprue Support Group, a chapter of CSA/USA, Inc. serving southeastern Michigan) Volume 5, Number 9, December 1996. Dr. Joseph Murray, one of the leading USA physicians in the diagnosis of celiac disease (celiac disease) and dermatitis herpetiformis (DH). Dr. Murray (murray.joseph@mayo.edu) of the Mayo Clinic Rochester, MN, is a gastroenterologist who specializes in treating Celiac disease:

Q: Is there any kidney disease associated with celiac disease?

A: Yes: IgA nephropathy, which is a common condition causing blood in the urine (possibly in microscopic amounts that would not be detected visually), may be caused by celiac disease. This may be similar to what happens in DH, where antibodies produced in the intestine get deposited under the skin. In IgA nephropathy, you've got IgA that was produced somewhere (we don't know where) getting deposited in the kidneys, causing secondary damage to the kidneys.

Helena Contributor
Helena
Posted

Thanks lonewolf and riceaddict. I don't think my grandpa has that autoimmune problem you described, lonewolf. but looking at riceaddict's post it looks like kidney failure could in some cases be gluten related. (I'm not personally having kidney trouble---just had that one off test that made me wonder. when the test was repeated, i was fine, and so i'm not worrying about it--just wondering about the what-ifs had i not gone gluten-free.)

missy'smom Collaborator
missy'smom
Posted
Is he already gluten-free? It certainly isn't a cure-all for everything, but I've read several people's stories that it has helped their children with ADHD and ADD. My son's teacher wanted him tested for ADD last year. To make a long story short, we tried a gluten-free diet, it helped and his homeroom teacher this year laughed when I told her about last year - she can't believe anyone would be concerned. But she hasn't seen him on gluten. <_<

Since going gluten free I had also read about ADHD kids being put on gluten-free diets and that it helps some. We went through extensive educational testing last year because I wouldn't settle for just an opinion based on a check list. Now I want to explore some possible physical/medical causes. He hasn't yet been tested for celiac but I plan to do that. He shows no symptoms according to what I've experienced(and I had alot) and after reading here about what other parents have experienced with their celiac kids. I hesitate to put him on a special diet unless I have something that clearly points me in that direction. And, there are so many different ones. Carbs have also been mentioned to me, which is a different thing from gluten and also makes sense(I had gestational diabetes and controlled it by diet).

Sorry, I didn't want to turn this into an ADD thread. But I do appreciate your input. RiceAddict, It's good to learn about the kidney problem you have. Just one more thing to be aware of for the future if he has the celiac gene. But hopefully he shouldn't have to go through what we and previous generations have.

UR Groovy Explorer
UR Groovy
Posted

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UR Groovy Explorer
UR Groovy
Posted

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lonewolf Collaborator
lonewolf
Posted
  • Author
Hi Folks,

First, I want to thank Lonewolf for being the only person out there that I've seen that has found the same thing I did to be true - you're very supportive and helpful. I appreciate that you want to help people out there suffering with steroids and chemo. I'm quite sure that my Nephrotic Syndrome has improved, because if I cheat & introduce things I seem to be a problem, it takes about 5 days to get back to where I was. I have to admit, though, that this is rough. Sometimes, I just want some butter - this is a super big no-no for me. Still haven't had labs, but they're coming soon. Good Karma Rice Cream really is pretty good if you're off dairy and gluten. Anyway, just wanted to drop in and say thanks again.

Hi Fajitas,

Glad to see you're posting now! I hope things are still going well. I hope you stick around and introduce yourself to the whole group.

missy'smom Collaborator
missy'smom
Posted
One more thing in regards to ADHD:

A lot of the research that I have come across indicates that ADHD is helped quite a bit by eliminating wheat/gluten. Also, MSG - it's bad, bad, bad for kids or even adults with any of these malabsorbtion diseases. It's a hydrolyzed protein. It's not too far off from the problem with gluten if you look into what it is (free glutamic acid). It's just horrible stuff - and it goes by many different names. Please keep your ADHD child off MSG - not a bad thing for anybody in general.

Thanks, I'll keep my eye out for that.

UR Groovy Explorer
UR Groovy
Posted

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lonewolf Collaborator
lonewolf
Posted
  • Author
Sorry, realized I should have stuck to this thread. Like I said, forgive my lack of correctness RE: message boards. I'm new to this. Also, sometimes, I feel like i should tend to my own nittin's. Anyway, I'll post here, as I'm probably unwelcome in your Celiac world. I was just looking for a little support. Thanks anyway,

Over & Out.

Hi Lonewolf

UR Groovy Explorer
UR Groovy
Posted

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lonewolf Collaborator
lonewolf
Posted
  • Author

Don't even worry, Fajitas. I know what you mean about stressing over the labwork. I hope you show a lot of improvement since going gluten-free.

I see on your signature that you like pasta. Have you tried Tinkyada yet? It's really good. We eat pasta regularly around here. Everyone eats gluten-free pasta and I even serve it to company - no one can tell the difference.

UR Groovy Explorer
UR Groovy
Posted

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RiceAddict Rookie
RiceAddict
Posted

OK, I think it's time to do some serious research! For those of you who have been following this thread from the beginning, recall that I was DX with stage 4 chronic renal insufficiency (kidney failure) My total kidney function was measured at 22% in May. With my condition, it is NOT supposed to improve. I had a visit with my nephrologist on Thursday and my renal function measued 26%. (FYI-once you reach 15% you require dialysis or a transplant) My doctor (a MD and PhD) was totally shocked. My cholesteral was also way down and the other numbers looked nearly normal. I have been gluten-free for about 6 weeks now and starting to feel very good, you know the feel good when you finally flush the gluten out. My doctor said to himself "I wonder if the celiac had anything to do with the kidney disease?" He then asked--jokingly--if I wanted to go on a lecture tour with him as a case study example. lol

So, what exactly IS the relationship between gluten and kidneys? I'm starting to think that for some there may be a connection, maybe indirect, but I'm certainly scratching my head over this.

I will have to say that I was so excited to hear the results of the tests that I nearly went out and ate some gluteny celebration cake....but I was a good boy and just drank a Mt. Dew.

UR Groovy Explorer
UR Groovy
Posted

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