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Focal Segmental Glomerulosclerosis (fsgs)
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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!

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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!

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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

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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

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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

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Going gluten free may be beneficial if you're among the roughly 10 percent of people who suffer from celiac disease, a genetic immune disorder, ... View the full article
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