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libbyann

Kidney Disease And Gluten Intolerance

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Do any of you have both? While my kidneys are functioning very well right now, my doctor wants me to pay more attention to my diet. She gave me a booklet with information about what foods to eat/not to eat with kidney disease, but I'm not sure how to balance it all with a gluten-free diet. Potatoes, for instance, are not a good food for kidney disease; a lot of gluten-free products and recipes use potato starch flour. And bean flour - beans are high in protein, but what about bean flour? I'd be really interested if anyone knows any books or websites that might help. I suppose I'd need a very specialized dietician to help with this, but I sure can't afford that right now.

Thanks.

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Below is some information I found on the website for National Kidney Foundation:

http://www.kidney.org/atoz/atozItem.cfm?id=95

The site did recommend seeing a renal dietician.

Based on a quick review of the information I think you might want to consider removing most processed food from your diet.


Phyllis

Gluten Free - 30 years

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Do any of you have both? While my kidneys are functioning very well right now, my doctor wants me to pay more attention to my diet. She gave me a booklet with information about what foods to eat/not to eat with kidney disease, but I'm not sure how to balance it all with a gluten-free diet. Potatoes, for instance, are not a good food for kidney disease; a lot of gluten-free products and recipes use potato starch flour. And bean flour - beans are high in protein, but what about bean flour? I'd be really interested if anyone knows any books or websites that might help. I suppose I'd need a very specialized dietician to help with this, but I sure can't afford that right now.

Thanks.

Seeing a professional would be good, when you can afford it. In the meantime, Lonewolf (Lori? I think) has a lot of experience with kidneys. And she has a lot of knowledge about diet so I would send her a PM (personal message) and ask her.

~Laura

Edited to add: Some people here (can't remember who -maybe Lonewolf) had great kidney function improvement after going gluten-free.


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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My Mom has glomerular nephritis. This is associated with celiac

http://www.ncbi.nlm.nih.gov/pubmed/428155

(link from this site)

https://www.celiac.com/articles/1171/1/Celi...ease/Page1.html

If you contact the National Kidney Foundation, they will send you a ton of helpful material.

1-800-622-9010


I don't eat gluten and neither do my cats

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I am in remission right now, but I have something called Minimal Change Nephrotic Syndrome (or Minimal Change Disease). It is similar to Glomerular Nephritis. My kidney function has always been okay, but the problem is with "spilling" protein. Going gluten-free was like a miracle cure for me. I don't have problems with protein, but it would be a good idea to consult a renal dietitician to get advice about what YOU need. At this point, I can even eat salt, potassium and pretty much everything except gluten, dairy and soy.

PM me if I can be of any help!


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

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Do any of you have both? While my kidneys are functioning very well right now, my doctor wants me to pay more attention to my diet. She gave me a booklet with information about what foods to eat/not to eat with kidney disease, but I'm not sure how to balance it all with a gluten-free diet. Potatoes, for instance, are not a good food for kidney disease; a lot of gluten-free products and recipes use potato starch flour. And bean flour - beans are high in protein, but what about bean flour? I'd be really interested if anyone knows any books or websites that might help. I suppose I'd need a very specialized dietician to help with this, but I sure can't afford that right now.

Thanks.

I have 1/2 my right kidney scarred from pyelonephritus infections more than 30 years ago. Despite the AMA wanting me to take antibiotics (which I was rapidly becoming allergic to), I discovered taking herbs and changing my diet made all the difference and I stopped getting kidney and bladder infections.

However recently, after I started avoiding all trace glutens, I had a series of cross contamination incidents which put my body way out of balance. I got bronchitis which after a few weeks and two more CC incidents became a UTI with inflammation in my kidneys. I now am on antibiotics again, and actually have had to do two courses of them. As well as taking my usual marshmallow root, uva ursi, dandelion root, cleavers, barberry root, corn silk, unsweetened cranberry juice etc. for UTI's--which does still definitely help. I think without them I might easily have ended up in the hospital. I am now well on the mend though my energy is taking a while to gather so to speak.

I now realize how crucial it is to avoid all potential cross contamination and take my own food and thermos everywhere -- even if it does flaunt social convention. I don't know if this might apply to you or not, but it might. Just a word of warning etc. Being off the gluten totally including all trace glutens is well worth it since my body is no longer achey and I am less anxious as well as more assured my eyes will not get glaucoma like my mother etc. etc. However I do have to be careful.

Meanwhile what is this about potatoes? I have read and found potatoes to be good for what ails me--as well as a number of other things like cucumbers and anything that makes one pee more. Melons are supposed to be good but not for me since I also have candida overgrowth tendencies. However there are different kinds of kidney problems; do you have stones for instance instead? In any case one can easily avoid potato flour especially if you bake your own stuff. Potato flour is used as a binder. Not much is used or the baked good or pancake will not dry out--maybe just 1 teaspoon is used. You can use things like cooked squash or sweet potatoes or mashed bananas to replace potato flour in baking or just use more tapioca flour and/or xanthan gum powder (use only a very small amount like 1 teaspoon). If you can eat eggs, you can just use eggs as a binder. Ditto with say nonfat organic yogurt. Applesauce will make your baked goods moist.

You can use bean flour too. As well as the normal non gluten flours of teff, quinoa, sorghum, amaranth, and non gluten infected cornmeal.

Its better of course to use other things than ground up flours for the majority of your diet however. But then you probably know that already...

Hope this helps.

Bea


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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I am in remission right now, but I have something called Minimal Change Nephrotic Syndrome (or Minimal Change Disease). It is similar to Glomerular Nephritis. My kidney function has always been okay, but the problem is with "spilling" protein. Going gluten-free was like a miracle cure for me. I don't have problems with protein, but it would be a good idea to consult a renal dietitician to get advice about what YOU need. At this point, I can even eat salt, potassium and pretty much everything except gluten, dairy and soy.

PM me if I can be of any help!

Hi Lonewolf....my husband Steven was diagnosed (biopsy)with Minimal Change Disease in Sept 2007. He was on 80 mg Prednisone for 9 months and is now tapering off that and is on Cyclosporine (100mg twice a day) since two weeks along with predn. 10 mg every other day. I found this site and the possibility of helping him by checking out a gluten free diet.....you give me a glimmer of hope. I find he was first improving on the predn. but the last while he seems to retain more fluid and no energy. Anything you can add?

Thanks,

Amelie


Amelie

www.ameliesilks.com

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Hi Lonewolf....my husband Steven was diagnosed (biopsy)with Minimal Change Disease in Sept 2007. He was on 80 mg Prednisone for 9 months and is now tapering off that and is on Cyclosporine (100mg twice a day) since two weeks along with predn. 10 mg every other day. I found this site and the possibility of helping him by checking out a gluten free diet.....you give me a glimmer of hope. I find he was first improving on the predn. but the last while he seems to retain more fluid and no energy. Anything you can add?

Thanks,

Amelie

Hi Amelie,

I'm glad you found the site! I was diagnosed with MCD by biopsy in August of 2003. (Did you happen to get to see the needle they stuck in your husband? Oh my...) I was on prednisone for 9-1/2 months and hated every minute of it. My nephrologist wanted me to go on Cyclosporine, but I just couldn't do it. We were trying to find a way to keep me in remission, but I kept relapsing. That's when I discovered that going totally gluten-free put me into remission completely. After that, I tapered off the pred. and have never had to go back on.

A little boy on my son's soccer team last year also had MCD. I had only met one other person with it before and he and his mom had never met anyone else with it. When I told her what I had done to get into remission, she was interested right away and put him on the diet the next week. He went into remission after about 5 weeks and now, 9 months later, he's still in remission, has lost close to 50 pounds of prednisone weight and is doing great. His pediatric nephrologist says that he's "cured" and doesn't even need to come back to see her unless there's some problem. All of his bloodwork was normal for the first time in 8 years.

There's another gal on here (UR Groovy) with MCD who has had a lot of improvement and has stayed off the prednisone, although I don't know if she's fully in remission.

Feel free to message me or just keep up a dialogue on this thread. Good luck to your husband! I hope he has dramatically good results like I did!


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

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I do not have kidney disease.......but my left kidney was removed when it "died" from a kidney stone......I only have my right kidney but it is strong and health.


DeLina

still struggling to get gluten free....Diagnosed in May 08.

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Hi Lonewolf....my husband Steven was diagnosed (biopsy)with Minimal Change Disease in Sept 2007. He was on 80 mg Prednisone for 9 months and is now tapering off that and is on Cyclosporine (100mg twice a day) since two weeks along with predn. 10 mg every other day. I found this site and the possibility of helping him by checking out a gluten free diet.....you give me a glimmer of hope. I find he was first improving on the predn. but the last while he seems to retain more fluid and no energy. Anything you can add?

Thanks,

Amelie

...

There's another gal on here (UR Groovy) with MCD who has had a lot of improvement and has stayed off the prednisone, although I don't know if she's fully in remission.

...

Hello Amelie,

I'm Kat. I have MCD as well. I'm not in remission. I've not been in remission since diagnosis. I was also on Prednisone, and began tapering off 6 1/2 months into it when my nephrologist realized that the Prednisone wasn't working for me, so 8 months after treatment began and 35 lbs. later, my numbers were worse than at diagnosis.

Here's why I'm replying: When I was tapering off the Prednisone, it was murder. I was exhausted and sick from the withdrawals. I was puffed up like a balloon, and I felt like sleeping all day long. It could be that the withdrawals are bad for him. Funny, as horrible as the Prednisone was (shingles, and all the rest), the withdrawals were the worse.

Anyway, it was about two or so years later that I went gluten-free. My labs improved more than they had the whole time I was being 'treated'. I haven't had ankle or hand swelling since, but I can see that I'm still spilling protein. My kidney function continues to be perfect, though, and the last couple times I was tested, it was only 1-2 grams / 24 hr (which, I guess, technically, takes me out of the MCD zone, but is not considered remission).

I guess it could be that I'm just a more stubborn case than Lonewolf and the boy, or maybe it's that they were both tapering from the Prednisone when they went gluten-free - I wasn't. Maybe I'm just higher on the spectrum or that there are other contributing factors that I'm not aware of.

Anyway, let us know how it goes with your husband I hope that going gluten free makes a difference ... it certainly has for me.

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Hi Kat! Good to see you on here. I was hoping you'd respond too. I keep hoping that you'll get into true remission, but I'm glad you still don't have swelling. Hope all is well with you!


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

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I have celiac and my fiance has kidney disease (IGa nephropathy). We actually try not to do too much processed foods (we're tryign to save money as we're getting married in two months...AAAH). We usually stick to white rice (brown has more potassium) and when we have veggies, it's iceburg lettuce (less potassium than others) some carrots, corn. If we have pasta, we do have the brown rice pasta on occassion, once to twice a month, and it is the brown rice pasta. Plus a lot of the crackers he's realized that he can eat more of with consuming less protien and less potassium. It's definintely doable....it's just hard when it comes to the veggies and the actual amount of food you can eat.


Jami

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Hi Amelie,

I'm glad you found the site! I was diagnosed with MCD by biopsy in August of 2003. (Did you happen to get to see the needle they stuck in your husband? Oh my...) I was on prednisone for 9-1/2 months and hated every minute of it. My nephrologist wanted me to go on Cyclosporine, but I just couldn't do it. We were trying to find a way to keep me in remission, but I kept relapsing. That's when I discovered that going totally gluten-free put me into remission completely. After that, I tapered off the pred. and have never had to go back on.

A little boy on my son's soccer team last year also had MCD. I had only met one other person with it before and he and his mom had never met anyone else with it. When I told her what I had done to get into remission, she was interested right away and put him on the diet the next week. He went into remission after about 5 weeks and now, 9 months later, he's still in remission, has lost close to 50 pounds of prednisone weight and is doing great. His pediatric nephrologist says that he's "cured" and doesn't even need to come back to see her unless there's some problem. All of his bloodwork was normal for the first time in 8 years.

There's another gal on here (UR Groovy) with MCD who has had a lot of improvement and has stayed off the prednisone, although I don't know if she's fully in remission.

Feel free to message me or just keep up a dialogue on this thread. Good luck to your husband! I hope he has dramatically good results like I did!

Hi Lonewolf, Thank you for your rapid response and encouragement. We do not know much at all about gluten free diet and need to research this. We saw the family doctor yesterday and he has nothing against us trying as he says' "it is not hokuspokus", no harm in trying.

The most troublesome symptom is his very swollen feet and legs up to almost the knees. It keeps him from being more active, he is by nature a very active person. Luckily he did not gain weight after the prednisone. The withdrawal of the predn., now at 10 mg alternate days, seems not to affect him, neither the added cyclosporine. He is taking all the diuretics for the edema; i think they can't give any more.

We are lucky to have a bakery just across from us who specialzes in gluten free bread. We will start on this to-morrow when we have all our ducks in a row. We eat a lot of converted white rice normally. Do i also have to worry about spices? Thanks again,

Amelie


Amelie

www.ameliesilks.com

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Hello Amelie,

I'm Kat. I have MCD as well. I'm not in remission. I've not been in remission since diagnosis. I was also on Prednisone, and began tapering off 6 1/2 months into it when my nephrologist realized that the Prednisone wasn't working for me, so 8 months after treatment began and 35 lbs. later, my numbers were worse than at diagnosis.

Here's why I'm replying: When I was tapering off the Prednisone, it was murder. I was exhausted and sick from the withdrawals. I was puffed up like a balloon, and I felt like sleeping all day long. It could be that the withdrawals are bad for him. Funny, as horrible as the Prednisone was (shingles, and all the rest), the withdrawals were the worse.

Anyway, it was about two or so years later that I went gluten-free. My labs improved more than they had the whole time I was being 'treated'. I haven't had ankle or hand swelling since, but I can see that I'm still spilling protein. My kidney function continues to be perfect, though, and the last couple times I was tested, it was only 1-2 grams / 24 hr (which, I guess, technically, takes me out of the MCD zone, but is not considered remission).

I guess it could be that I'm just a more stubborn case than Lonewolf and the boy, or maybe it's that they were both tapering from the Prednisone when they went gluten-free - I wasn't. Maybe I'm just higher on the spectrum or that there are other contributing factors that I'm not aware of.

Anyway, let us know how it goes with your husband I hope that going gluten free makes a difference ... it certainly has for me.

Hello Kat,

I already wrote some things to Lonewolf and won't repeat these here. Thank you for your input. As you know this kind of support really does give one a bit of hope and I don't think the medical profession has any idea what we are all saying to each other. They probably could learn some from the various experiences...At any rate I have this thought: that some of you with the success of gluten free diet may be celiacs or part celiacs and of course not all of us are. It will be a trial for Steven to try this diet and we can't lose but possibly gain. One thing that springs to my mind is that as long as I know him (46 years!! ) he has very often suffered from diarrhea so that might be a sign.

We will keep you posted on our experience. How long do you figure we should aim for seeing any results? We see the nephrologist again in two or three weeks.

Keep well and cheerio,

Amelie


Amelie

www.ameliesilks.com

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Hi Lonewolf, Thank you for your rapid response and encouragement. We do not know much at all about gluten free diet and need to research this. We saw the family doctor yesterday and he has nothing against us trying as he says' "it is not hokuspokus", no harm in trying.

The most troublesome symptom is his very swollen feet and legs up to almost the knees. It keeps him from being more active, he is by nature a very active person. Luckily he did not gain weight after the prednisone. The withdrawal of the predn., now at 10 mg alternate days, seems not to affect him, neither the added cyclosporine. He is taking all the diuretics for the edema; i think they can't give any more.

We are lucky to have a bakery just across from us who specialzes in gluten free bread. We will start on this to-morrow when we have all our ducks in a row. We eat a lot of converted white rice normally. Do i also have to worry about spices? Thanks again,

Amelie

Spend some time on here and feel free to ask all the questions you can think of. People here are very knowledgable and will be happy to help you out. It takes a while to get the hang of the diet, but it's very do-able. The little boy I helped out had very immediate and dramatic results - he got into full remission after about 5 weeks and he had been diagnosed for 8 years and had never had a remission hold, even with prednisone.

When your husband starts the diet he should do it 100%. Just cutting down on wheat/gluten probably won't help. There really is a lot of food left to eat. It's great that you have a source for gluten-free bread - that's usually a hard thing to do without.

One more thing - I have never been diagnosed with Celiac and don't have either of the 2 main genes, so it's not just a Celiac thing.

Please let us know how he does - I'm really hoping that it starts helping him right away.


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

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Hello Kat,

I already wrote some things to Lonewolf and won't repeat these here. Thank you for your input. As you know this kind of support really does give one a bit of hope and I don't think the medical profession has any idea what we are all saying to each other. They probably could learn some from the various experiences...At any rate I have this thought: that some of you with the success of gluten free diet may be celiacs or part celiacs and of course not all of us are. It will be a trial for Steven to try this diet and we can't lose but possibly gain. One thing that springs to my mind is that as long as I know him (46 years!! ) he has very often suffered from diarrhea so that might be a sign.

We will keep you posted on our experience. How long do you figure we should aim for seeing any results? We see the nephrologist again in two or three weeks.

Keep well and cheerio,

Amelie

Hi,

I also suffered from diarrhea almost every day before I went gluten free. I've never been tested for Celiac - I got aggrevated with my nephrologist & decided to do an elimination diet. I definitely have a problem with gluten.

As for how long it takes, I can only tell you what happened with me - anyone here will tell you that every body responds differently. It was only a couple days before I noticed that the swelling was almost completely gone - my face began to look less puffy really quickly too. I lost 8 lbs in the 1st week - presumably the water I was holding in my feet, etc. The cramping & diarrhea took a couple weeks to go away, but the diarrhea came back after about a couple months (but not so much the cramping - I stopped dairy again, which seemed to do the trick. I'm back on dairy now, even though I'm aware it's a bit of an issue - not near the issue that gluten is.

I'll be interested to know how it goes for you two. Stick around. Lots of info here - you'd be surprised how confusing it can be - with time, it gets to be 2nd nature.

k

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Hi,

I also suffered from diarrhea almost every day before I went gluten free. I've never been tested for Celiac - I got aggrevated with my nephrologist & decided to do an elimination diet. I definitely have a problem with gluten.

As for how long it takes, I can only tell you what happened with me - anyone here will tell you that every body responds differently. It was only a couple days before I noticed that the swelling was almost completely gone - my face began to look less puffy really quickly too. I lost 8 lbs in the 1st week - presumably the water I was holding in my feet, etc. The cramping & diarrhea took a couple weeks to go away, but the diarrhea came back after about a couple months (but not so much the cramping - I stopped dairy again, which seemed to do the trick. I'm back on dairy now, even though I'm aware it's a bit of an issue - not near the issue that gluten is.

I'll be interested to know how it goes for you two. Stick around. Lots of info here - you'd be surprised how confusing it can be - with time, it gets to be 2nd nature.

k

Hi again,

Steven started in earnest with the non gluten to-day. His edema the last week seems somewhat worse; we don't know if it is from less prednisone, the added cyclosporine or just relapsing. i wish there was a CURE for MCD. It seems that children have a better chance of that. We are 71 years old and thus ole folks. i would be happy to give him one of my kidneys if that would help. we are seeing the neph. next week. Will keep you posted,

Amelie


Amelie

www.ameliesilks.com

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Spend some time on here and feel free to ask all the questions you can think of. People here are very knowledgable and will be happy to help you out. It takes a while to get the hang of the diet, but it's very do-able. The little boy I helped out had very immediate and dramatic results - he got into full remission after about 5 weeks and he had been diagnosed for 8 years and had never had a remission hold, even with prednisone.

When your husband starts the diet he should do it 100%. Just cutting down on wheat/gluten probably won't help. There really is a lot of food left to eat. It's great that you have a source for gluten-free bread - that's usually a hard thing to do without.

One more thing - I have never been diagnosed with Celiac and don't have either of the 2 main genes, so it's not just a Celiac thing.

Please let us know how he does - I'm really hoping that it starts helping him right away.

Thank you all for your responses.

Steven now has been on the glutenfree diet for one week and we don't see any change. All I can say is that I read others on another site with MCD do a lot better

in the fact that they go to work and seem to lead a fairly normal life while taking the meds that the nephs have prescribed. Steven is almost bedridden because 1) his feet are so swollen that it hurts to walk and 2) extreme fatique. He now is being weaned off prednisone - 10 mg every other day - and is taking twice a day 100mg cyclosporine. In fact we think he is a bit worse then he was before. He was diagnosed with MCD in Sept. 2007. Now Kat writes that she had these symptoms while prednisone was reduced so this may be happening.Any comments?

Amelie


Amelie

www.ameliesilks.com

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Hi again,

Steven started in earnest with the non gluten to-day. His edema the last week seems somewhat worse; we don't know if it is from less prednisone, the added cyclosporine or just relapsing. i wish there was a CURE for MCD. It seems that children have a better chance of that. We are 71 years old and thus ole folks. i would be happy to give him one of my kidneys if that would help. we are seeing the neph. next week. Will keep you posted,

Amelie

Hi Amelie,

I was really hoping Steven would have some reduction in swelling. I know how miserable that it. My swelling was mostly prettty mild, but I had one summer where my feet were pretty unrecognizable. Are you on reduced sodium? Is he still eating dairy?

You're so right - it's frustrating that there is no cure - what bothers me more is they can't give a reason why it happened in the first place. I'm pretty sure I've read more than once that kidney transplants are not that successful for curing this, and that MCD will likely return.

When I was withdrawing from the Prednisone, the worst part was the extreme fatigue. 'Exhaustion' doesn't begin to describe what I was going through. My energy returned to normal about 2 or 3 weeks after I was done completely. I think, if I remember correctly, it was my lab results that told me that I was worse than before. It spiked somewhere in the 3rd month too.

The end went something like this: I spent a couple weeks at 10 mg & another 2 at 5mg. I think I was sick just because I was so exhausted that I wasn't moving my body at all, and I was so depressed - 8 months is a big chunk of life.

It's hard to comment about what may be going on with Steven - this disease is such a mystery, and I have no idea what his levels are (frankly, even if I did, I still wouldn't assume that I know anything about his case).

I refused Cyclosporine after dealing with the Prednisone & have also refused chemotherapy drugs (Cytoxin), so I can't say what the Cyclosporine might be affecting with Steven. I've heard good things about Cell-Cept (sp?). I know it's stupid to refuse medication, but I'm pretty stubborn - for me, it's a quality of life thing - I can't bear the thought of going through treatment again. I think I'd rather die - literally. Again, I know it's probably stupid - I guess I'm a rebel.

Anyway, I do hope that you two are doing better soon. I really feel for you. My husband and I were newlyweds when I began treatment (for my 6th anniversary, I got 20 pounds and case of shingles). He held my hand a lot and loved me. I cried a lot (to myself). I try not to go there anymore. Please take care of each other and let us know how you're doing.

k

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Thank you all for your responses.

Steven now has been on the glutenfree diet for one week and we don't see any change. All I can say is that I read others on another site with MCD do a lot better

in the fact that they go to work and seem to lead a fairly normal life while taking the meds that the nephs have prescribed. Steven is almost bedridden because 1) his feet are so swollen that it hurts to walk and 2) extreme fatique. He now is being weaned off prednisone - 10 mg every other day - and is taking twice a day 100mg cyclosporine. In fact we think he is a bit worse then he was before. He was diagnosed with MCD in Sept. 2007. Now Kat writes that she had these symptoms while prednisone was reduced so this may be happening.Any comments?

Amelie

I'm so sorry that he's not doing well. Please give the gluten-free diet a bit more than a week to help though. The little boy I described took 5 weeks to get into remission and he's a child. And I agree with Kat - it is normal for someone to feel fatigue when weaning off the prednisone. It takes longer for some people to get through it than others.


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

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I'm so sorry that he's not doing well. Please give the gluten-free diet a bit more than a week to help though. The little boy I described took 5 weeks to get into remission and he's a child. And I agree with Kat - it is normal for someone to feel fatigue when weaning off the prednisone. It takes longer for some people to get through it than others.

Both you and Kat are so nice to be taking the time to answer me! To-day we saw the family doctor because Steven developed an

infection in his big toe and also a sore eye. He was put on an antibiotic but we must check with the nephr. if now he should be taken off the cyclosporine while the antibiotic works. My my, if it isn't one thing it is another. More news after our Friday meeting with the nephrologist.

If the fatique is the result of withdrawal from the prednisone then that is something positive instead of a relapse. This MCD certainly is a weird diseasea nd everyone is so different. We are here in Canada and maybe the treatment is slightly different as well. It sounds as if the two of you are doing really well. We are 71 and that makes a difference too, eh?

Cheerio,

Amelie


Amelie

www.ameliesilks.com

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Hi Amelie,

I was really hoping Steven would have some reduction in swelling. I know how miserable that it. My swelling was mostly prettty mild, but I had one summer where my feet were pretty unrecognizable. Are you on reduced sodium? Is he still eating dairy?

You're so right - it's frustrating that there is no cure - what bothers me more is they can't give a reason why it happened in the first place. I'm pretty sure I've read more than once that kidney transplants are not that successful for curing this, and that MCD will likely return.

When I was withdrawing from the Prednisone, the worst part was the extreme fatigue. 'Exhaustion' doesn't begin to describe what I was going through. My energy returned to normal about 2 or 3 weeks after I was done completely. I think, if I remember correctly, it was my lab results that told me that I was worse than before. It spiked somewhere in the 3rd month too.

The end went something like this: I spent a couple weeks at 10 mg & another 2 at 5mg. I think I was sick just because I was so exhausted that I wasn't moving my body at all, and I was so depressed - 8 months is a big chunk of life.

It's hard to comment about what may be going on with Steven - this disease is such a mystery, and I have no idea what his levels are (frankly, even if I did, I still wouldn't assume that I know anything about his case).

I refused Cyclosporine after dealing with the Prednisone & have also refused chemotherapy drugs (Cytoxin), so I can't say what the Cyclosporine might be affecting with Steven. I've heard good things about Cell-Cept (sp?). I know it's stupid to refuse medication, but I'm pretty stubborn - for me, it's a quality of life thing - I can't bear the thought of going through treatment again. I think I'd rather die - literally. Again, I know it's probably stupid - I guess I'm a rebel.

Anyway, I do hope that you two are doing better soon. I really feel for you. My husband and I were newlyweds when I began treatment (for my 6th anniversary, I got 20 pounds and case of shingles). He held my hand a lot and loved me. I cried a lot (to myself). I try not to go there anymore. Please take care of each other and let us know how you're doing.

k

Both you and Lonewolf are so nice to be taking the time to answer me! To-day we saw the family doctor because Steven developed an

infection in his big toe and also a sore eye. He was put on an antibiotic but we must check with the nephr. if now he should be taken off the cyclosporine while the antibiotic works. My my, if it isn't one thing it is another. More news after our Friday meeting with the nephrologist.

If the fatique is the result of withdrawal from the prednisone then that is something positive instead of a relapse. This MCD certainly is a weird diseasea nd everyone is so different. We are here in Canada and maybe the treatment is slightly different as well. It sounds as if the two of you are doing really well. We are 71 and that makes a difference too, eh?

Cheerio,

Amelie


Amelie

www.ameliesilks.com

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I was just diagnosed with celiac. A year and a half ago I was diagnosed with Minimal Change Disease, the treatment for which I still feel has ruined my life. The minimal change disease started about three weeks after I started the Atkins diet which I thought was a total coincidence. But following Atkins induction is pretty much a gluten-free diet by necessity! Now I'm paranoid that maybe my immune system just needs something to attack, and if I go gluten-free MCD will come back. Is this insane?

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I was just diagnosed with celiac. A year and a half ago I was diagnosed with Minimal Change Disease, the treatment for which I still feel has ruined my life. The minimal change disease started about three weeks after I started the Atkins diet which I thought was a total coincidence. But following Atkins induction is pretty much a gluten-free diet by necessity! Now I'm paranoid that maybe my immune system just needs something to attack, and if I go gluten-free MCD will come back. Is this insane?

_________

The gluten free diet does not cause kidney disease.

A gluten free diet has to be 100% gluten free, while the Atkins beginning phase comes close, there is too much chance of cross contamination unless one is designing that personal version of Atkins to be gluten free as well. "Gluten free" means that foods which might have contamination issues, like other grains, are carefully grown and processed and packaged and cooked to be certified free of accidental wheat family protein contamination. It means no cheating. All the grain product that I ate today, the packaging was labeled "gluten free," and the single baked good I ate, I made myself of specially packaged gluten free flour and whole nuts I ground myself. Gluten free means that the tomato soup I just ate for supper was specially packaged and marked "gluten free" and was not just any soup. Atkins is not as strict.

A gluten free diet is balanced, and includes lots of fresh fruits and vegetables, fresh meat, fish, chicken, eggs, nuts, oils, and sometimes some dairy products such as cheese or butter. There may also be alternative gluten free grain products to wheat. Beginning Atkins is not quite balanced and designed to jump start weight loss, by severely limiting carbohydrates, most of the critique I have seen of it the writers hadn't studied nor eaten it very long, and were all using the same line about how bad high protein and fat are, and ignoring the fact that maintenance Atkins is more balanced, and no where is it written in stone that a person can't eat more green vegetables. I have seen people who were carbohydrate junkies and vegetarians determined to stick to their sugar and carbs attack it the hardest. Whatever.

Some kidney disease is likely related to, or caused, by being (undiagnosed) gluten intolerant or celiac. This is because the auto immune reaction can affect many different parts of the body. Kidney stones can be caused by gluten intolerance. The lining of the gut is damaged, malnutrition results, calcium is not absorbed properly, the blood calcium levels drop, the kidneys regulate blood calcium levels so they pull the calcium out of the bones, resulting in bone loss AND sometimes the formation of calcium crystals and kidney stones. Malfunctioning kidneys = too much calcium crystals, too much protein and blood in the urine, also.

My personal experience is that going gluten free years ago coincided with my chronic kidney problems clearing up, so I have no intention of going back on a regular diet. I also took calcium supplements religiously before doing that, because one doctor insisted I had to for my bones, it was a urologist who told me not to take Tums, which are the wrong kind of calcium and makes it worse. Calcium citrate is better. B vitamins also are essential to the function of the entire metabolism, as celiacs also have trouble with absorbing those and are frequently low.

I suspect a lot of people who never get diagnosed properly with celiac or gluten intolerance may also have kidney problems with "no known cause."

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