Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Focal Segmental Glomerulosclerosis (fsgs)


dadoffiveboys

Recommended Posts

dadoffiveboys Rookie

I wanted to post some interesting information about my family (and my Father that has FSGS - via Biopsy confirmed).

I found myself allergic to gluten (intolerance) and went gluten-free and noticed my back pains went away completely (I have DH). My father about 9 months ago went gluten-free as well (after MUCH convincing) and the following occurred:

1) He has suffered from chronic gastritis (and ulcers) for the past 25 years taking prilosec, malox, etc. all the time - GONE

2) High blood pressure - 6 medications - GONE (still some problems but not as bad)

3) High protein levels in the urine - caused by the FSGS - Creatine at Biopsy of original problem was 2.8, 9 months ago was 3.3. Since he went on the gluten-free diet, Creatine has dropped from 3.3 to 2.9 and now it is at 2.3 - 9 months later!

I was NEGATIVE for celiac disease via TTG but I did show elevated IgA Anti-gliadin antibodies - enough for my doctor to say I have a gluten intolerance even though the 'celiac expert' said I didn't have anything and the IgA test wasn't very predictive of celiac. The doctor is 'right' in that I probably don't have celiac disease.. but I bet I have some form of the FSGS my dad has! (JUST AS BAD IMHO!)

My fathers doctors claim the decrease in Creatine and restoration of Kidney function (1 point in Creatine is ALOT OF CHANGE in Kidney function BTW!) was impossible.. and they are scratching their heads. Normal function is about a level of 1.1.

It was always hypothesized that FSGS might by caused (or is itself) an autoimmune disorder (much like Celiac Disease). I wanted to share this with everyone because I DO believe Gluten (in our case) is the CAUSE of the FSGS and that the IGA antibodies clogged his kidney. No real proof except in the numbers and he's getting better - of course we don't need doctors to tell us what to eat and the longer we go gluten-free the more we prove them wrong :). Not all cases of FSGS may be related to Gluten either.. but if anyone had this condition it would be worth trying a gluten-free diet - the prognosis is the same as for Celiac - no more gluten EVER! (Other food allergies may cause IgA antibodies to clog the kidney as well - e.g. milk protein).

BTW I do believe the cause of many of the major disorders are food allergies - undiagnosed for the most part. All of my boys (five of them) are eating gluten-free and it's very funny that ALL of thier 'problems' disappeared. Asthma - GONE; Ear Infections- GONE; Bed wetting - GONE!! (yeah how is this caused by gluten??!); Nosebleeds - GONE; Eczema - GONE; Constipation - GONE; Reflux - GONE!. Between my kids being on Pulmicort and Omeprizol and having tubes in their ears.. I'm VERY HAPPY to be rid of all that medication! Funny enough.. in the past year since we've gone gluten free my kids haven't needed any medicine except Tylenol for the mild colds we got... we would always chronically get sick. Of course being gluten-free and eating at home all the time we eat healthier so I'm sure that helps too!

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



lonewolf Collaborator

Interesting to see that someone else has had great improvement with a kidney disease. I was diagnosed with Minimal Change Nephrotic Syndrome (similar, but not quite as severe as FSGS) almost 5 years ago and going fanatically gluten-free has made it go into remission. I hope your dad sticks with it and keeps improving!

I have tried for years, in vain, to share my story with others who have Nephrotic Syndrome, but it seems that no one wants to try a gluten-free diet. Most will complain about all their medications, but don't really want to have to do anything "hard" to get better. A little boy on my son's soccer team has the same thing I have and his mom put him on a gluten-free diet out of desperation and he went into remission after about 6 weeks. They are the only ones who I've ever "convinced" to try it. Keep sharing your dad's good news - maybe someone else will listen and have good results too!

Link to comment
Share on other sites
cyberprof Enthusiast

Thanks Dadof5!

My hubby has dormant myeloma, a blood cancer. Kidney failure in this cancer is a main cause of death because the IgA antibodies clog the kidneys. He also has thin basement membrane syndrome, which was found after a kidney biopsy during his myeloma diagnosis. (The biopsy nearly killed him, as they hit an artery causing uncontrolled bleeding.)

So Dadof5, I guess my hubby going gluten-free might keep him from having other kidney-related complications and I appreciate your post!

Glad to hear your boys (and dad) are doing well- I hope my son has the same response.

~Laura

Link to comment
Share on other sites
  • 1 year later...
lokinetworks Newbie

Thanks for posting this.. I was diagnosed with FSGS last October and the Nephrologists basically told me I'd be on dialysis within the next 6 months. Since reading this article last November I went totally gluten-free. I just had my kidney function checked last week and low and behold my creatinine dropped from 2.08 to 1.9 and my kidney function went from 35 to 39. The doc said I'd never see any improvement.

Thanks again

-Eric

Link to comment
Share on other sites
  • 4 months later...
denisestevens Newbie
Interesting to see that someone else has had great improvement with a kidney disease. I was diagnosed with Minimal Change Nephrotic Syndrome (similar, but not quite as severe as FSGS) almost 5 years ago and going fanatically gluten-free has made it go into remission. I hope your dad sticks with it and keeps improving!

I have tried for years, in vain, to share my story with others who have Nephrotic Syndrome, but it seems that no one wants to try a gluten-free diet. Most will complain about all their medications, but don't really want to have to do anything "hard" to get better. A little boy on my son's soccer team has the same thing I have and his mom put him on a gluten-free diet out of desperation and he went into remission after about 6 weeks. They are the only ones who I've ever "convinced" to try it. Keep sharing your dad's good news - maybe someone else will listen and have good results too!

Hi Liz (Lonewolf), I was diagnosed with FSGS with nephrotic syndrome in July 2009 and you convinced me to try a gluten-free diet. My BFF with celiac disease found a link between kidney disease and gluten on this website. I started reading stories by people with kidney disease, and your story in particular struck a nerve with me. I immediately went onto a gluten-free diet that day. Fortunately I was already educated about what that means because of my friend with celiac disease, so it was not an overwhelming transition at all. I'm thrilled to say that I went into full spontaneous remission without treatment (Prednisone) and I was taken off both cholesterol and blood pressure medication yesterday. All my blood work came back normal, too, and my cholesterol, which was 362 in July, as of last Friday is 144 (73 HDL and 58 LDL). My blood pressure averages 110/60. In July it was 140/90 thereabouts. I've also lost 17 pounds, which was mostly fluid retention. My nephrologist yesterday told me my FSGS improvement is remarkable and my cholesterol is incredible. He didn't discount my gluten-free diet as a cause, but he said it's controversial as there is not much research on this. Mostly research is focused on new drug treatments. I hope to live a lifetime in remission dietarily and not ever have to take medication for this. Going gluten-free can be a hassle, but it's well worth it. Not THAT hard, especially considering the alternative.

So Liz, don't give up hope and keep spreading the news. I will do the same. While we've never met, your story did have a major impact on me and going gluten free may have literally saved my life. I plan to stay gluten free for life.

Denise

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,477
    • Most Online (within 30 mins)
      7,748

    Susan Maxwell- Trumble
    Newest Member
    Susan Maxwell- Trumble
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • JustGemi
    • trents
      No! Do not start the gluten free diet until you know whether or not you will be having an endoscopy/biopsy to verify the blood antibody test results. Starting gluten free eating ahead of either form of diagnostic testing can invalidate the results. You don't want to allow the villous lining of the small bowel to experience healing ahead of testing by removing gluten.
    • Scott Adams
      We offer a ton of recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/ and have done some articles on fast food places, but keep in mind that eating out is a common source of gluten contamination: https://www.celiac.com/search/?q=fast food&quick=1&type=cms_records2 Many colleges now offer allergen-friendly, and sometimes gluten-free options in their student cafeterias: https://www.celiac.com/search/?&q=colleges&type=cms_records2&quick=1&search_and_or=and&sortby=relevancy PS - Look into GliadinX, which is a sponsor here, but many studies have been done on it which show that it may break down small amounts of gluten in the stomach, before it reaches the intestines.
    • JustGemi
      Thank you! What do you recommend in the next 7 weeks until I see my Doctor?  Just start my Gluten free diet?
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • Create New...