• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Nephrotic Syndrome
0

10 posts in this topic

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!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

;)

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

 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

 

 

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 smile.gif 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!

0

Share this post


Link to post
Share on other sites




Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,332
    • Total Posts
      935,538
  • Member Statistics

    • Total Members
      64,994
    • Most Online
      3,093

    Newest Member
    Daisy Charlize
    Joined
  • Popular Now

  • Topics

  • Posts

    • Thank you all for replying. It's good to know that it's not just me. It gives me (and hopefully the other noobs) some comfort to know that it's normal for the ups and downs to happen. I keep trying to tell myself to be patient with it but it's so hard to be able to look down the road further than the moment when you're in the middle of it. I forgot to mention, yeah, I have had a full vitamin, mineral, and general blood panel done and everything came back normal. Regardless I still supplement with a good (and expensive) multivitamin plus sublingual D3 and B12 every day, and naturally I scrutinize the labels on those and everything else for anything even non-gluten that sounds fishy, including the possibility of CC at the factory. I guess it will just take longer to stabilize.
    • Thank you for your reply.  I did make sure to keep eating gluten before getting tested. I'm still unsure whether or not I should ask my doctor to run the rest of the tests in the celiac panel.  
    • LOL, re: trousers vs. pants.   Here in the US, trousers are a specific kind of pants/slacks, with a looser fit and often with pleats in the front.   I also read that Vit D helps digestion;  can't recall the links, but likely within Gundry's writings about lectin.   My Dr. just told me to resume 2000 IU per day, and I do think it's made a slight difference. Have also read that bone broth is helpful, its gelatinous nature supposedly coats the stomach.   I know bone broth has not been formally studied much, but again, probably can't hurt and might help.
    • I'd try the gluten free diet for a few months to see if that helps at all. Can't hurt. If it doesn't help I'd try a low FODMAP meat and veggies diet.
    • A good amount of the neurological effects from celiac are also related to nutrient deficiencies caused by malabsorbtion from damaged intestines and the fact that most gluten-free foods are not fortified and your net eating many grains. You sound good about the CC and everything and seem to be taking percations goods, I still use freezer paper for a clean safe work surface even in my gluten free home lol. Anyway top things to look for and consider are magnesium and B vitamin deficiencies . I take my in a drink to avoid pills and the sublingual forms are more easily absorbed by the body. I normally suggest 2 brand or forms of magnesium and you need to find the one that works for you there. They are Natural Vitality Calm, a magnesium citrate in a powder, you add it to a warm drink let it fizz and drink it. Magnesium citrate can be a bit harsh on some peoples guts, I suggest you start off with 1/4 tsp and work your way up to the full dose over a week, if you get D then your taking too much and need to back down or the citrate version might be too rough for you. In which case I suggest Doctors Best, bit more off tasting and mixes best with a juice but with the powdered form of it you do not have to worry about digestion issues, I just found the citrate to seem to help with my nerve issues more. B Vitamins, I take Liquid Health Stress & Energy and the Neurological Support, I take 1 tbsp of each 2-3 times a day before meals. Really helps with everything and being in liquid forms I just add to tea and drink it. There are many other vitamins to look into and we each have ones we have issues with more then others, getting tested might help, NOTE magnesium and B vitamins sometimes show normal but you will still find you need supplementation...bit of a odd thing I found. Yeah the neurological effects are  huge thing with me as my issues with this disease cause my immune system to attack my nervous system and brain....accumulated brain and nerve damage over the years. Had a whole mental trauma issues with them, my gastro issues back then were mostly just constipation. NOW days I get the Vomiting, D, gas, bloat, and then constipation for a week along with neurological issues which NOW if I get exposed to eating straight gluten (happened twice in 3 years to this extent) I loose motor control and collapse unable to move, normally while vomiting violently to the point of blood coming up (this was what happened last June 2016 after eating out).  
  • Upcoming Events