Nephrotic Syndrome

[ValeriaZ]

Hello,

My son has a steroid-dependent nephrotic syndrome. He is on steroids and cyclosporine.

Endomysium antibodies test he had , negative, but I suppose this is not reliable being on immunosuppression.

Nephrologists deny all correlations with any food allergies or intolerances, but I can observe them! Milk, soy, eggs. Gluten was not so obvious just measuring the urine proteine sticks.

Searching internet found celiac sites and symptoms and it is shocking for me how many symptoms of gluten intolerance and nephrotic syndrome are common.

Started gluten free for him and myself and after a month his labs are very much improved!

I have so many hopes for gluten free!

Now question Does anybody here have NS and convinced it can be related to gluten intolerance? If yes have your relapses significantly decreased after going gluten-free? Other triggers like colds/antibiotics/infections stayed or also could decrease??

Many thanks in advance!

[eatmeat4good]

Welcome!

I just want to wish you well.

I read your post with interest.

Amazing his labs are improved.

I hope you both feel great soon.

Good thing you stayed proactive and didn't just listen to the Dr.'s.

[ValeriaZ]

  On 3/8/2011 at 3:14 PM, eatmeat4good said:

Welcome!

I just want to wish you well.

I read your post with interest.

Amazing his labs are improved.

I hope you both feel great soon.

Good thing you stayed proactive and didn't just listen to the Dr.'s.

Thank you!!!!!!!!!

Yeah... You know gastroenterology is 5th floor in our hospital, and nephrology is 7th....

But the body is one. They (being for doctors) look at a specific part, ignoring all the rest..

Our health is in our hands literally

[ravenwoodglass]

I hope things improve. I was never formally diagnosed with kidney issues but I no longer throw protein and blood into my urine and my edema resolved, unless I get glutened.

[ValeriaZ]

  On 3/8/2011 at 11:22 PM, ravenwoodglass said:

I hope things improve. I was never formally diagnosed with kidney issues but I no longer throw protein and blood into my urine and my edema resolved, unless I get glutened.

Thank you very much!

Sounds so promising.

Wish you and your children all the health!

[power]

My son developed steroid dependent mcn when he was 2,He is now 17 and has been on cyclophosphomide,cyclosporine.tacrolimus mmf,and finally for the past 3 years,rituximab.I happened to meet a mother who's 12 yr old son also has nephrotic syndrome and that she had it when she was a child but had grown out of it.She also said she later developed crohnes.I began to think of my families health history and found that i have an intolerance to dairy,my husbands father has celiac as well as a niece and nephew .So i looked up dairy/celiac and nephrotic syndrome on line and found a connection!I immediately put my son on a gluten/dairy free diet as the whole family .This was in december 2010.scince then my husbands bloating is gone'my 23 year old sons asthma is gone,my daughter(20)who had occasional cramping and nausea,gone(she is also only 5ft in a family of 6ft brothers and a 5"7 mom.The best part?my youngest son has been free of any immunosuppressants since february and his albustix have been negative.The only time his stix went to trace was when he ate a gluten free pizza that had been baked on a cookie sheet that was used for a previous regular pizza.

[ravenwoodglass]

  On 3/25/2011 at 3:41 PM, power said:

My son developed steroid dependent mcn when he was 2,He is now 17 and has been on cyclophosphomide,cyclosporine.tacrolimus mmf,and finally for the past 3 years,rituximab.I happened to meet a mother who's 12 yr old son also has nephrotic syndrome and that she had it when she was a child but had grown out of it.She also said she later developed crohnes.I began to think of my families health history and found that i have an intolerance to dairy,my husbands father has celiac as well as a niece and nephew .So i looked up dairy/celiac and nephrotic syndrome on line and found a connection!I immediately put my son on a gluten/dairy free diet as the whole family .This was in december 2010.scince then my husbands bloating is gone'my 23 year old sons asthma is gone,my daughter(20)who had occasional cramping and nausea,gone(she is also only 5ft in a family of 6ft brothers and a 5"7 mom.The best part?my youngest son has been free of any immunosuppressants since february and his albustix have been negative.The only time his stix went to trace was when he ate a gluten free pizza that had been baked on a cookie sheet that was used for a previous regular pizza.

Welcome to the board. It is wonderful that your family has had such good results on the diet. Thanks for posting.

[power]

hi valeriaZ.just an update to the second part of your question about relapses during a cold or illness.Mike,the one with nephrotic syndrome received a vaccine against menengitis and it did raise his protien levels slightly(between trace and .03 for about a week).he upped his fluid intake a bit and it dropped back down to neg.We're still showing great results!

[power]

  On 4/19/2011 at 7:10 PM, power said:

hi valeriaZ.just an update to the second part of your question about relapses during a cold or illness.Mike,the one with nephrotic syndrome received a vaccine against menengitis and it did raise his protien levels slightly(between trace and .03 for about a week).he upped his fluid intake a bit and it dropped back down to neg.We're still showing great results!

it's now june 9 and much has changed.Mikes protein levels gradually increased over the three weeks following his immunization and had to go on prednisone,as he was being weened off it he relapsed again after catching a cold.It seems any thing challenging his immune system can cause a reaction including his gluten allergy.

[SueSmith]

 Hi ValeriaZ,

 

I just read your post and it filled my heart with hope. My sister is 27 years old, type 1 diabetes and her condition has always been OK, until the stress from losing our mother last year started affecting her. She developed some acne and the tetracycline she took for it, damaged her kidneys.

 

At the beginning of last month, we found out that our mother died from celiac (undiagnosed) and we also figured we might have it (since we were developing the symtoms as well - the above mentioned acne, on her case, being one). She started a cold turkey gluten free diet.  The first 2 weeks were great, but she got a bad flu or some herxheimer reaction and her edema increased.

 

We went to her nephrologist yesterday and he said that not eating gluten has nothing to do with kidneys, therefore it will not improve her condition. I beg to differ. I have read many many stories about it, including yours. I would like to know how long it took for your son to notice improvements, if he had some withdrawal reaction.

 

She was prescribed some furosemide.

 

Best regards,

 

Suelen

 

 

  On 3/8/2011 at 9:12 AM, ValeriaZ said:

Hello,
My son has a steroid-dependent nephrotic syndrome. He is on steroids and cyclosporine.
Endomysium antibodies test he had , negative, but I suppose this is not reliable being on immunosuppression.
Nephrologists deny all correlations with any food allergies or intolerances, but I can observe them! Milk, soy, eggs. Gluten was not so obvious just measuring the urine proteine sticks.
Searching internet found celiac sites and symptoms and it is shocking for me how many symptoms of gluten intolerance and nephrotic syndrome are common.
Started gluten free for him and myself and after a month his labs are very much improved!
I have so many hopes for gluten free!

Now question Does anybody here have NS and convinced it can be related to gluten intolerance? If yes have your relapses significantly decreased after going gluten-free? Other triggers like colds/antibiotics/infections stayed or also could decrease??

Many thanks in advance!