Guest guest Posted May 30, 2003 Report Share Posted May 30, 2003 Hi folks, Another newbie question here... I saw a few vague references in some of the IgAN articles I was reading that hinted it could be related to undetected celiac disease, which sometimes has no symptoms. Then I saw another study when I ran a search on Google that said there was no link at all between the two. Does anyone here know more about this? I have a grandmother with full-fledged celiac disease who has to avoid anything with even a sprinkle of wheat in it...and I never had any celiac symptoms myself, but I wondered if it was something I should mention to my nephrologist next time I see her. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2003 Report Share Posted May 31, 2003 --Dear Krissi, I live in Poland and nephs from the hospital I was diagnosed in, want the patients with IGAN to follow low antigenic diet....That means that you have to be on gluten free diet, it is not not allow to drink fresh milk, eat some fruit etc.... I was really very unhappy about that at the beginig....All my life I ate normal bread so why on earth should I start to eat gluten free one ???? It was my first opinion LOL...I have never had any " stomach " problems before, I am alergic only to some kind of cosmetics, not to any food and now such a crazy diet...So I did some blood works on my own to see if I am alerigic to gluten and maybe have latent celiac disease....Not at all... And my knowlege about IGAN was still very little at that time .... So in July last year I found via internet this wonderful group of people here on the board... It occured that only several people here follow such diet...but I do understand more about IGAN... I decided to listen to my neph, so I really try to follow it...( but there were some occasions during the year when I ate a piece of normal cake...) I have checked it....the nephs in the best medical clinics here in my country treat mild IGAN this way...One of my friends who makes medical tv programmes did such - 17 minutes only about IGAN .....we have brodcasted it also in tv station I worked at, so my family and friends undrestand what this IGAN is about My next neph visit is on June 23....so we will see how my kidney are... Generaly I must say that I do feel much better than before being diagnosed... And this group is a real sunshine for me !!! Dear Krissi you can talk to your neph about the possibility of latent celiac disease...I do hope that it's not in your case...Very strict gluten free diet is not easy...especialy with " social life " . Hugs, Elvira - In iga-nephropathy , " K. D. " <krissi@d...> wrote: > Hi folks, > > Another newbie question here... I saw a few vague references in some of the IgAN articles I was reading that hinted it could be related to undetected celiac disease, which sometimes has no symptoms. Then I saw another study when I ran a search on Google that said there was no link at all between the two. Does anyone here know more about this? I have a grandmother with full-fledged celiac disease who has to avoid anything with even a sprinkle of wheat in it...and I never had any celiac symptoms myself, but I wondered if it was something I should mention to my nephrologist next time I see her. > > Thanks! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2003 Report Share Posted May 31, 2003 Dear Elvira, Very interesting about the gluten. I'm definitely going to look into it. I also have wondered about the macrobiotic diet. There, they don't recommend eating from the nightshade family because it is supposed to increase inflammation -- eggplant, peppers and tomatoes I think. Glad you are feeling better! rotghi > > > Date: 2003/05/31 Sat AM 03:33:01 EDT > To: iga-nephropathy > Subject: Re: latent celiac disease > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2003 Report Share Posted June 1, 2003 ---Hi Rotghi I am not sure if that low antigenic diet is interesting or not LOL... I am just not courageous enough to allow myself not to listen to my neph I do have very good medical care in this clinic..(.and there is also a dialise centre there, they do transplants, etc... ) My IGAN is still mild....we will see in some years ...anyway it's not such a big harm ! I have just realized that I am on this diet for 12 months...This diet plus fish oil pills were my only treatment till now. And I swear I do feel much better!!! - I mean that my energy level is nearly like in times I had no problems with kidney.... Strange ...but I am really very happy about it . All the best, Elvira In iga-nephropathy , <rotghi@c...> wrote: > Dear Elvira, > > Very interesting about the gluten. I'm definitely going to look into it. I also have wondered about the macrobiotic diet. There, they don't recommend eating from the nightshade family because it is supposed to increase inflammation -- eggplant, peppers and tomatoes I think. > > Glad you are feeling better! > > rotghi > > > > > From: " Elvira " <elwira.zmudzinska@b...> > > Date: 2003/05/31 Sat AM 03:33:01 EDT > > To: iga-nephropathy > > Subject: Re: latent celiac disease > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2003 Report Share Posted June 1, 2003 Hi Elvira, I think you are our biggest success story with the antigenic diet! Hard to believe you have been on it a year already. I am so glad it has caused you to feel so much better though. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2003 Report Share Posted June 1, 2003 ---Dear I am not sure if I am a success story with this diet.. LOL but my body seems to react very well or to fish oil or to this crazy diet... Thank you ! The truth is that during these 12 months I even caught much less colds, flu or other virus infections... I don't love the taste of gluten free bread , the normal one is much more delicious ...and some of my favourite fruit are also forbidden but it's only food... I am not going to leave this wonderful support group, so I will tell you how my kidney are in 10 years ... My neph wants me to stay on this diet, so I will stay ...maybe it could be of any benefit for some medical research ??? I wish it could be so easy for everyone diagnosed with mild IGAN.... only fish oil pills, diet and never nothing more serious... Love, Elvira In iga-nephropathy , W4JC@a... wrote: > Hi Elvira, > > I think you are our biggest success story with the antigenic diet! Hard to > believe you have been on it a year already. I am so glad it has caused you to > feel so much better though. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2003 Report Share Posted June 1, 2003 > Dear Elvira, Thanks for your email! Wow! You've been doing the oligo-antigenic diet for 1 year? I am seriously considering trying it. My IgAN (or what they presume is IgAN) was totally no problem till 2 years ago. Now my creatinine clearance is 67 and I have 400 of protein in my 24 hour urinanalysis. Instead of trace or small blood on the urine test, I have large which bothers me. I wonder if anyone knows if the antigenic diet might reduce the hematuria and delay progression. I also thought it was interesting to read in some of the posts that people with IgAn are intolerant to cold and fatigued easily. I have been that way my whole life. I'm blessed with the talent of being able to take great naps! I've learned to listen to my body and rest when I need it so I don't get a viral infection and then have a flare up. But I never knew that the fatigue could be from the IgAN. I just thought I needed more sleep that other people. Does anyone know why someone with normal kidney function with IgAN would be fatigued? Back to the special, diet, is it really hard to do? Take care, rotghi > > Date: 2003/06/01 Sun AM 08:30:39 EDT > To: iga-nephropathy > Subject: Re: latent celiac disease > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 > Hi Rotghi Sorry, but I am not able to " read " your lab test numbers very well, so I am not sure how advanced is you IGAN at this moment... >I have never asked my neph what was my creatinine clearance ( I don't know what numbers are normal or border line) but my serum creatine the last time was 0,95 ( normal range). I always have the trace of protein and I guess in 24 hour urinanalysis my results were higher in numbers than yours ( but I am not sure). BUT I was told by my neph that my kidney function was good, no reason to worry etc. ( It was in Janurary ) My next visit is on June 23. I have to make 15! different blood and urine tests before , so we will see... You asked if someone with normal kidney function suffers from fatigue ... I was the one! Before I was diagnosed the fatiuge had been sth that made me really angry. I just did not understand why on earth quite healthy person, not old enough ( I am still 35) had problems sometimes to " survive " 8 hours at work ... Sometimes it was difficult for me to do my normal house work after coming back from the office... It was not the problem that I felt sleepy or so...it was like the luck of energy... I really hated that..sometimes I even felt dizzy ... I don't think that it had sth together with my state of mind, becouse I am rather very optimistic person .... But as I told on the board before the fatigue is nearly gone, no dizzines at all. So or the diet or fish oil pills .... My neph wants me to start ACE inhibitor since the June visit. I am not sure if low antigenic diet can delay IGAN progression ....but that must be why Polish nephs recommend it with mild IGAN I belive. Re: the diet itself... First of all I have checked if I was not alergic to gluten. The answer was no, so tiny amounts of gluten wheat will not kill me... LOL. I don't eat normal bread at all now, only rice bread of very special gluten free one. In my city I have to order it in the special shop, it's baked in Poznan ( 150 km far from my place) and the bread is delivered only once I week. I pick it there and freeze. Cooking for my family I rather avoid using normal wheat, but of course I make some meals only for them like dumplings etc... I eat only gluten free pasta , but we all eat the same sauce...I use rice making meat rolls etc...It's not so difficult. But during Holidays I ate some normal cake ... In this diet it's not allowed to eat beaf meat - no problem for me, no fresh milk but you can eat farmer cheese, cheese, yoghurts and milk called " acidofilne " in Polish. For me the bigest " harm " is that oranges, lemon, friut with tiny stones like srawberries are forbidden ...but during the winter I tried some But you can eat all vagetables. So I can say that I follow this diet in 95 % ... But I have accepted it, don't feel sorry and try to enjoy my life with want my nephs wants me to do :) Hugs, Elvira > Dear Elvira, > > Thanks for your email! Wow! You've been doing the oligo-antigenic diet for 1 year? I am seriously considering trying it. My IgAN (or what they presume is IgAN) was totally no problem till 2 years ago. Now my creatinine clearance is 67 and I have 400 of protein in my 24 hour urinanalysis. Instead of trace or small blood on the urine test, I have large which bothers me. I wonder if anyone knows if the antigenic diet might reduce the hematuria and delay progression. > > I also thought it was interesting to read in some of the posts that people with IgAn are intolerant to cold and fatigued easily. I have been that way my whole life. I'm blessed with the talent of being able to take great naps! I've learned to listen to my body and rest when I need it so I don't get a viral infection and then have a flare up. But I never knew that the fatigue could be from the IgAN. I just thought I needed more sleep that other people. Does anyone know why someone with normal kidney function with IgAN would be fatigued? > > Back to the special, diet, is it really hard to do? > > Take care, > > rotghi > > > From: " Elvira " <elwira.zmudzinska@b...> > > Date: 2003/06/01 Sun AM 08:30:39 EDT > > To: iga-nephropathy > > Subject: Re: latent celiac disease > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 > Dear Elvira, Thanks for your email. You are so lucky you are receiving all this great advice from your MD so early in the disease. When I got it they didn't even know it was IgAN. That was in 1979. And they sure didn't know about ACE inhibitors, fish oil and antigenic diet. Even my current MD didn't put me on an ACE until I developed proteinuria and hypertension. But I was always getting low blood pressure before so maybe he was worried I would pass out. I'm going to give the diet a try because I do have a lot of allergies and I have found I am lactose intolerant and even the lactaid pills don't help. So maybe it's not the lactose that's bothering me. Maybe it's the casein. Also, I have just learned that my father is sensitive to gluten, so maybe I inherited it. I am so thankful for this group because I would have never known about this diet. Keep well and don't get discouraged on the antigenic diet. Sounds like you're doing a good job. It makes sense to me because your intestines make IgA. So I guess gluten and casein may be causing more IgA. I have read that people who get new kidneys still get IgAN in their new kidneys so I guess we need to do things that will reduce the IgA. Gluten Free Pantry here I come!!! rotghi > > Date: 2003/06/02 Mon AM 04:45:31 EDT > To: iga-nephropathy > Subject: Re: latent celiac disease > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 > Hi Rotghi Yes, you are right I am really lucky that I have recived very good medical care so early...and the nephs here are very caring... I just can not imagine the situation that Jeanie wrote some messages before, that she had a real problem and have to wait 4 months for a visit...I am so sorry for her. You can try this diet, it is no harm but aske your neph before it... I don't need any renal diet now, I mean I was not asked to control the potasium or salt intake, etc... But I do wish that such a diet could help you to prolonge the good condision of your kidneys. Sorry for my possible mistakes in English Elvira > > Dear Elvira, > > Thanks for your email. You are so lucky you are receiving all this great advice from your MD so early in the disease. When I got it they didn't even know it was IgAN. That was in 1979. And they sure didn't know about ACE inhibitors, fish oil and antigenic diet. Even my current MD didn't put me on an ACE until I developed proteinuria and hypertension. But I was always getting low blood pressure before so maybe he was worried I would pass out. I'm going to give the diet a try because I do have a lot of allergies and I have found I am lactose intolerant and even the lactaid pills don't help. So maybe it's not the lactose that's bothering me. Maybe it's the casein. Also, I have just learned that my father is sensitive to gluten, so maybe I inherited it. > > I am so thankful for this group because I would have never known about this diet. > > Keep well and don't get discouraged on the antigenic diet. Sounds like you're doing a good job. It makes sense to me because your intestines make IgA. So I guess gluten and casein may be causing more IgA. I have read that people who get new kidneys still get IgAN in their new kidneys so I guess we need to do things that will reduce the IgA. > > Gluten Free Pantry here I come!!! > > rotghi > > > From: " Elvira " <elwira.zmudzinska@b...> > > Date: 2003/06/02 Mon AM 04:45:31 EDT > > To: iga-nephropathy > > Subject: Re: latent celiac disease > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 Your English is very good! Thanks for your nice words. rotghi > > > Date: 2003/06/02 Mon AM 08:59:51 EDT > To: iga-nephropathy > Subject: Re: latent celiac disease > > Quote Link to comment Share on other sites More sharing options...
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