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Focal Segmental Glomerulosclerosis (fsgs)


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#1 dadoffiveboys

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Posted 26 March 2008 - 02:05 AM

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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#2 lonewolf

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Posted 26 March 2008 - 08:00 AM

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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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

#3 cyberprof

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Posted 26 March 2008 - 10:08 AM

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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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

#4 lokinetworks

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Posted 30 May 2009 - 07:59 PM

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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#5 denisestevens

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Posted 14 October 2009 - 03:57 PM

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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