Hello everyone. I am new to the registry, but am not new to Dents Disease. I was diagnosed with X-Linked Nephrolithiasis at about 5 years old, after I passed a kidney stone and have been living with the condition ever since. (I'm now 28). Throughout my entire life I've never felt sick, am not on dialysis, and besides the quarterly doctor appointments and 7 medications / 14 pills a day, I would have no idea that there was anything wrong. Is this how most of you also feel? I have not had a chance yet to read through all of the posts, but will make sure to do that today. With that said I did feel compelled to share some things that I have done in my life over the past few months to really improve my condition. While I know things can change quickly and will continue to monitor my stats on a monthly basis, a slight tweak to my life style has really helped out. In December of this past year I had my year end appointment with my doctor and was alerted that my creatinine had reached an all time high of 4.4 (up from 3.1 the month prior). I was initially very concerned with these results because of the jump in one month and the fact that my doctor was now discussing dialysis as something I may need to be prepared to do in the coming months if things did not improve (I've only been on the transplant list for 18 months, so have a ways to go). In a desperate attempt to avoid going that route, I asked my doctor what I could possibly do to help prevent further progression. He simply stated eat less or eliminate animal protein from my diet. I scheduled a follow up meeting the next day with my dietician within the Transplant program I am in and they confirmed that a low protein diet is something that in some cases has improved kidney function. After that meeting I immediate cut all meat (beef, poultry, and seafood) out of my diet and limited myself to less than 4 servings of dairy or egg products a day. In the 40 days that I have maintained this regimen I have seen my creatinine go from 4.40 to 3.05. I was personally shocked by this improvement and to be honest I think my doctor was also. By no means do I feel that I am in the clear and know that I will be living with this disease for the rest of my life, but do have a new-found hope that I will be able to avoid/delay dialysis and a transplant. While these things can change and I am prepared for that, I urge you or those close to you with Dent's disease to try this out. I am someone who didn't eat for "fuel", I ate because I LOVE food and still LOVE food. It can be hard at times, but at this point it seems to be 100% worth it. When my friends and family ask me if I think it is extreme to cut out meat and most dairy, my response has been "what is more extreme? Cutting out meet and most dairy from your diet or having to be hooked up to a machine to have your blood cleaned 3 days a week?". For me it was an easy answer. Please feel free to reach out if you have any questions about the diet I have implemented or if you have seen or heard of similar results. Thanks, Jay

Hi Jay, thanks for posting. I'm the mother of a 26 year old. We found out about his kidney disease when he was 6 months old and that it was Dents when he was 13. His creatinine is currently 1.7 - 1.9 and his doctor hasn't recommended any diet changes except not over doing with it with protein. I'm sure that will change if his numbers go up. When he was a teenager he was a vegetarian and his nephrologist was concerned he wasn't getting enough protein at the time. My question to you is, do you eat any protein besides some milk products and eggs? Also, how's your vitamin D? We've been learning about low levels in Dents patients. I hope your levels continue to to improve. Take care, Jeanne

Jeanne, I can confirm with my doctor, but have never been told anything of concern regarding Vitamin D levels. It appears that my condition has progressed further than your sons, so that is probably why I am on a slightly more restricted diet. Right now the general direction that I was given was to eat less than 4 servings of Meat/Dairy/Egg each day, in an effort to reduce my overall protein levels. I am on a low protein diet now, so those being the foods with the highest levels, make the most sense to cut out. For me cutting out meat was the easiest, but I have also started eating less dairy and egg each day. I am still getting protein from foods like chick peas, beans, and quinoa, but am trying to reduce my overall protein intake. I also learned that vegetables have protein, so am still getting plenty of protein from what I can tell through my increased consumption of fresh vegetables. I'm only two months into this, so we'll see how things continue to progress, but from the research I'm doing cutting out or reducing meat, dairy, and egg from your diet, will improve your health, for both healthy people and those with kidney conditions.

Thanks for your response Jay. I do appreciate it. I'm glad the diet change is helping. I'll remember that if things change on our end. Let me know what you find out about vitamin D. I assume your levels are good and that's why nothing's been said. I told my son you were on the list yesterday in hope to get him on it, but no luck yet. I'll keep trying. We're in Boston. Where are you? Take care, Jeanne

Jenne, Funny you ask. I live in Chicago, but actually work in Boston. I'm of the founders of a start up that is based in Boston, so spend Monday - Thursday out there each week and then am back in Chicago Friday and the weekends. I live right in the Financial District in Boston and work in The North End. I was also very opposed to getting on the list when it was first suggested by my doctor, but am obviously glad I did it. I probably felt pretty similar to your son, in that I didn't (and still don't) feel sick, so why should I get on the list. It turned out, that at Northwestern where I am on the list, it is a 5 year wait, so from my perspective it was better safe than sorry.

Jay, You hit the nail right on the head about his not joining. I wonder if I could get my son to meet you sometime when you're in Boston. He's a PhD student so I might not push this until school ends in early May, when he's not as busy. If you're into that happening some time, maybe someone can tell us how to share our contact info privately on this list. I'm also interested in Boston startups so it would be cool to learn more offline.

Jeanne, Please feel free to reach out to me on my personal email at jgustafson1683@gmail.com. I would be more than happy to speak to your son as I am out in Boston on a regular basis. Jay

Hi Jay. Reading your first message, I thought that could be my almost 20 year old son writing that in a few years! Like you, he has never had any symptoms, not even a kidney stone, maybe because he started taking potassium citrate and allopurinol at the early age of 3? He takes four meds (12 pills a day) and, for now as far as I know, does not dwell on his illness, because he feels perfectly OK. HIs creatinine I believe is around 2.8 (30% kidney function), so I myself am starting to be concerned if dialysis and transplant will be coming soon. I will pass on the info to him about decreasing protein from his diet, although I know he likes meat. He has always drunk tons of milk; although he is now taking less as he is in a dorm in university. Fortunately, he loves cooking and does his own dinner every night. How about salt? Has your doctor mentioned any advantage in reducing sodium in your diet? By the way, I was born in Boston and still have family there, so if there ever was a meeting of sorts in the Boston area, although we are now in western Canada, we might be able to attend.

RE: Vitamin D We will ask about the doctor about this on his next visit later this month. But I know it has never been a concern for my son. In fact, I remember a few years ago the pediatric nephrologist saying the opposite: that he should not take Vit. D supplements because of his kidney condition.

I'd be interested in hearing about all of your vitamin D info. Maybe my son's situation is unique. His level last summer was dangerously low. His nephologist told him to take 1000 IU a day for a few months and then stop and be retested in the fall. It was normal then so he was told to stop completely. In blood work two weeks ago, it was a little low and we're waiting to find out if he should start taking it again and if so, how much.

Minu, I am watching my overall salt intake now, but also have always done this. I am kind of always on the "go" so I find myself eating out most meals each week. I have made it a habit to ask the restaurant to add no additional salt and stay away from foods that are typically loaded with sodium like soups. In general my sodium intake has not been a problem and, but in general I am shoot for less than 2000 grams of sodium per day, per my dietitian. I would encourage your son to at least try it out for a month to see how things go. My plan was to give it a shot for a month and then play it by ear, but after I saw my creatinine drop a whole point in less than 4 weeks, it kind of sealed the deal. My goal is to continue this regimen with the hopes of getting my creatinine back below 2.0. If anything is ever set up in the Boston area or Chicago area I would be happy to join.

Thanks Jay. Yes, please keep us posted to know if a vegetarian diet does lower your creatinine. Best of luck! As to sodium, when my son was a young child (more than ten years ago), we were told that one of the meds he takes (hydrochlorothiazide) supposedely does not work unless you follow a lower sodium diet.

Hi to all, Let me add to your discussions. 1. Low Na (sodium) diet is advised for Dent patients because higher Na tends to increase Ca excretion in the urine and majority of Dent patients have increased Ca in the urine, some have stones and nephrocalcinosis 2. Vit D - Dent patients most commonly have increased levels of 1,25 vitamin D (which is an active form of vitamin D). That's why most physicians do not prescribe vitamin D. However, they can have low 25 vitamin D (precursor form, which is mostly measured) and it could be supplemented carefully as long as it does not increase Ca in the urine. 3. Jay, low protein diet for Dent disease is very interesting. In general, low protein diet for chronic kidney disease is still somewhat controversial and different doctors advocate different practices. The reason is that studies in animals have shown clear benefit, whereas, studies in humans were not as successful. As patients who have advanced kidney disease often have problems with malnutrition, which is a strongest predictor of mortality, doctors have shied away from protein restriction. However, Dent patients are not typical chronic kidney disease patients. They are younger, healthier and one of the specific problems of Dent disease is protein spill in the urine. I think the idea is very exciting and interesting and I think we should study it. I have told Jay that I was just awarded the grant to study role of phosphorus in Dent disease. I think that the next step could be protein restriction. I will need 10 pts with Dent older than 18. We could take the same group of people to study protein restriction and the effect of diet on urine composition, blood tests and progression of kdiney disease. This is a great example of how patients could impact research. Of course, from idea to study is a long way, but we have something here! Jay, please find out from your nutritionist how much P in g/kg/day are you eating in total. Also, if eating a very low protein diet - less than 0.4 g/kg/day, supplementation with ketoacids is suggested by some. Lada

Lada, Thanks for the detailed response. I will confirm with my dietician tomorrow, but I have been attempting to eat less than 28 grams of protein per day (50% of the recommended level for an adult male). The only real guidance I was given was less than 4 ounces / servings of meat, dairy, or egg each day. For me going to the extreme was the easiest route, so I have eliminated meat completely and eat a maxim of 4 servings of cheese or egg a day. The dietician did acknowledge that some protein is needed, but that you can still get that through consuming vegetables, legumes, etc. She did focus on a minimum level of "whole proteins" (I believe) which she stated I could get from the minimum dairy or egg. Hope this helps.

Yes, Now the inevitable question, how much do you weigh? Hope it's not invasion of privacy?! Lada

I am 5 foot 6. My weight fluctuates between 155 - 160.

OK, That's about 0.4 gm/kg/day, which qualifies as very low protein diet. Ask your dietician about supplementation with ketoacids (instead of aminoacids to avoid positive nitrogen balance). Lada

Before our doctor figured out the dents. We had several labs done. Out of it, there is a amino acid spill in urine. Does it have any significance. Did any of the patients did that test. Do wejust ignore those..

Hi vistaonly. When my son was still seeing the pediatric nephrologist, in his teens he had to submit 24 hour urine twice a year in a jug that had an acid pouch in it. I believe it was to check for oxalate. Don't know if it is the same as what you are referring to. Jay, would you mind telling what 7 meds you take? Do you think they have been helpful? My son has taken potassium citrate and allopurinol since he was diagnosed at the age of three. A few years later hydrochlorothiazide was added, and later also fosinopril (or monopril). So he takes four meds. I don't think they have been that helpful as his kidney function is now down to 26% (he will be 20 next month), but they must have helped avoid kidney stones as he has never had one.

Thanks Minu. My son is hydrochlorothiazide, Cytra-K, Potasium Chloride. He is skinny. Poor appetite. Did any of you experieced similar symtoms

Hi to all, Amino acid spill may be part of the Dent disease as it reflects problem in the reabsorption in the kidney (together with low molecular protein, phosphate, glucose and potassium spill). They are present variably in different people with Dent. Medications given for Dent disease cannot prevent kidney disease from progressing, but can possibly delay progression. There is no proof, since it has not been systematically studied. This is one of the goals of our research, to establish which treatments are effective. Lada

By loosing amino acids does body lacks anything. Do we need to treat this as well or no need. Thanks Dr.Lada.

Not usually, if the nutritional status is good and enough protein is taken. With high level of protein restriction it may become a problem and that's why supplements are needed. To avoid nitrogen burden, keto acids which are converted to aminoacids once taken, are suggested for kidney patients who are on very low protein diet. Lada

Minu, Sorry for the delayed response. Below are the medications I am taking, although I am pretty sure that I am spelling them wrong / not the correct name. Allopurinal (Daily) Hydroclorithizide (Daily) Aldactone (Daily) Lipitor (Daily) Vitamin - D (Weekly) Potasium Citrate /Uricid K (6 per day) Potasium / Kater or Kader (4 per day) It is hard for me to tell if they've been helpful, because I'm not really sure how quickly things would have progressed if I hadn't taken them. My creatinine has stayed for the most part between 2.5 - 3.3 from when I was 15 - 28, besides the recent spike to 4.3 that I was able to get back down with the vegetarian diet. IWhat I can say is I feel absolutley no side affects from any of the medication and since I've begun taking them about 13 years ago, things for the most part seem to have progressed at a slower rate.

Thanks Jay. I am no doctor but I found a few things interesting about your list of meds. Among them: 1. You are not taking an ACE inhibitor (such as fosinopril or monopril), given that you are taking so many other meds. 2. You are taking two different potassiums. 3. That you are taking allopurinol, like my son. My son was prescribed allopurinol when he was first diagnosed at the age of 3. We moved to another city that same year, and after a few years the new nephrologist kept mentioning he did not think allopurinol was necessary, and that the first nephrologist had prescribed it "erroneously" as his uric acid levels were within normal range. So at one point, when Daniel, my son, was 15, the doctor took him off it and that year his kidney function decreased dramatically compared to other years when the decline was very gradual. So, I asked the doctor to put him back on it after a year without allopurinol. Like you, don't know if this is what caused the sharper decline that year, as his GFR has been going down steadily anyway (although not that abruptly) in his late teens (He is almost 20.) Anyway, like Lada says, each case is different. Daniel was told not to take Vitamin D as a child. But we will ask neprologist in Daniel's appointment next week (now a different doctor as he switched to an adult clinic) about Vitamin D.

Thanks for the feedback Minu. I know that I was put on Vitamin D about two years ago, because the levels in my labs were low, but had never been on it previously. not sure if it is related to Dents or something else (my doc said it was one of the most regularly prescribed meds in the US)

Good Evening, It has been a while since I last sent an update on how the diet is working. In general things are still going really well. I saw my numbers go from 3.2 to about 3.3 from late January to mid February, but after my most recent labs they are back down to 3.17. Additionally, most of the other things that they measure on a monthly basis have improved or remained stable. Still feeling totally healthy and actually have had more energy lately. As I mentioned earlier, I would highly encourage anyone with Den'ts to give this a shot for a month to see how things go.

Hi Jay, I was interested to hear how you were doing? Lada

Hey Lada, Hope all is well. As of right now things have continued to remain pretty stable. I am due to go in for some lab work this week, but when I got my last tests done at the beginning of September, my results were still stable. My creatinine has fluctuated between 3.2 - 3.5, since I have switched over to this diet. At the end of November it will be a full year since I have adopted this diet, so will be curious to see how things look at that point. (When i switched to the diet my creatinine had gone up to 4.3). In general though, I'm still feeling good. No real issues going on right now, so going to keep up the diet for as long as I can. Jay

Good Afternoon Everyone, I wanted to just send everyone an update now that it has been 1 years since I have been doing the low protein / vegetarian diet. I got my lab results back this morning and my creatinine is now at 3.3, down from 3.78 last month. This is 1 full point below where I was last year (4.3) when I made the switch to the vegetarian diet. While my function has fluctuated anywhere from 3.2 - 3.8 the past year since making the switch, I feel pretty good about where the #'s are at right now and believe it must have something to do with the diet changes that I made. If anyone or their family members are not happy with their monthly results, I would highly encourage at least trying this out to see if it could work.

Thanks for the update Jay, and congratulations on your lower numbers. This is really good to know. I'll pass the suggestion along to my son. - Jeanne

Thanks Jay. So good that diet is working for you. I will again mention to my 20 year old son that a low animal protein diet would be best, despite the fact that he has told me he will never become a vegetarian. His kidney function does seem to be declining quicker as he ages. I do wonder if the faster decline in the past years is due to the fact that he does not live at home anymore, and although he cooks most of his meals himself, he lives with other university students who do not need a kidney friendly diet. His creatinine went down from 3.3 to 3.8 in the last three months. He will be repeating the lab test later this month, as the nurse was surprised and suspects the sudden increase was due to activity (skiing) and diet (lost of milk) just before doing the bloodwork.

Minu, Two years ago I would have said the same thing if someone suggested a vegetarian diet to me. I have always loved fine dining and with my schedule (travel 4 - 5 days per week) I eat out basically every meal. While both of these facts have made the diet difficult to follow at times, I really feel that it is the main reason if not the only reason that I have not needed a transplant or dialysis yet. My medications have stayed the same over the years, as has my level of physical activity. This is the only thing I have changed in my life and thus far it has yielded positive results. While going "cold turkey" and eliminating all meats will be very tough to do, I would suggest that your son not eat any meat 2 days every week and increase it from there if he chooses. Cutting out some of the protein consumption each week could help and possibly show him that the diet is easier to follow than expected. I also need to stress that the diet that I am following each month is something that I have done on my own through some conversations with Lada and research on the internet. The concept of a low protein diet to slow down the progression of Kidney Disease is a debated topic and there are very few doctors that will bring this suggestion up or encourage it (which is probably why most of us haven't been told to do this earlier). All I know is that I have seen great results this past year and that while a vegetarian diet may be "extreme", the prospect of receiving dialysis or a kidney transplant, seems much more "Extreme" to me.

Minu, thanks for mentioning exercise and your son's increased creatinine. My son started running this year and his creatinine also went up. I mentioned it to his nephrologist and my son, and no one made the connection. I'll mention it again at his next appointment, now that I've heard your son's experience. This group is incredibly useful and I thank all of you. Jeanne

Lada would be able to give an educated answer to this issue (exercise's relationship to creatinine), but the way I understand it, is that exercise increases or breakdowns muscle tissue, which in turn increases creatinine levels. My son is a lean muscular young man, and a doctor also once mentioned that his creatinine is therefore higher than that for a flabby old fat person! Is this true, I don't know.

Muscle is the site of creatinine production, so increased muscle mass results in higher creatinine. That's why a big, muscular man likely has a higher creatinine than a small, skinny old lady, even when they have the same kidney function. Creatinine is a marker of kidney function but not an ideal measure. To summarize - increased muscle mass may result in increased creatinine, even without worsening of kidney function. It does not mean the kidney function worsened. It's a little complicated, but I hope it makes some sense. Lada

Thanks for reconfirming this, Lada. Jay, I have another diet question, if I may (again, Lada might share her opinion, too): Do you avoid oxalate rich food (rhubarb, strawberries, nuts,spinach, leek, black tea, etc.) or is oxalate not an issue for you, or in general, for Dent patients?

Minu, I have not been told to avoid any of these foods by the doctors I see. It may be specific to my lab results, but this is not something they have brought up. In general, my focus has just been to avoid foods high in protein and sodium, including high protein vegetarian foods. I would be interested in hearing how these foods may/can affect Dent's patients, because I am much more interested in treating my body through nutrition as opposed to other means.

Jay, I agree with you that dietary modification seems a very prudent way to control the disease, in particular for people who are motivated and disciplined. May not work for everyone, as you can expect. Even though the stones in Dent are mostly calcium oxalate or calcium phosphate, usually the problem is not in Oxalate but in calcium, that is excreted excessively in Dent patients. One way to look into this is to look at oxalate in the 24h urine and see if it is elevated. In that situation, oxalate restriction would be advised, but not otherwise. Jay has really motivated me to think about dietary recommendations and modifications for Dent. My hypothesis is that phosphorus might play an importan role (food rich in phosphorus as well) and I plan to study that in my clinical study. I'm currently working on getting the IRB approval of NIH and Mayo clinic, and I will let you know when I am ready for recruitment. I am very excited as this could be the first systematic way to look into the diet and phosphorus effects urine composition and tendency to form stones in Dent. Lada

Hi all. I have just read the diet thread and found it very interesting and insightful. My son was diagnosed with Dents at Great Ormond St at the age of 8 or so. Today, he is a healthy 14 year old, the only indicator is the consistent protein spill in his urine. We have been given little pro active advice from our consultant about diet apart from trying to keep his salt intake low. From this site, I read that fruits high in citric acid have proven beneficial, so my son does eat raspberries, oranges etc quite regularly. I have noticed that his taste in food is much healthier and is very different to my other two children, in that he does not eat many confectionaries and prefers fish to meat. After reading the recent thread I think that this sort of diet, low in red meat and high in vegetables and citric acid is the right approach. Can I ask users at what age did creatinine levels rise significantly and is this the clearest measure of reduced kidney function? Ie an increasing creatinine reading means decreasing kidney function? Once again, thank you to everyone that posts here, it is so helpful.

Hi Jay and Lada, I shared the vegetarian diet conversation with my husband, and he reminded me that our son was a vegetarian from approximately ages 15 to 22. He's now 27. Looking back at his creatinine at the time, it never went down. It was usually in the 1.7 - 1.9 range, and it did not go up after he started eating meat again. I am interested in how it's helping you Jay. Please do keep us posted as you continue. Jeanne

Jeanne, I will certainly to continue to update the group. I get blood-work done once a month, so will let you guys know how things look at that time. One thing I wanted to point out that I do not know if I have explicitly said before is that I do not feel that the low protein diet is something that will cure Dent's disease. With that said, I do think that it is a potential treatment method that could potentially drastically slowdown the progression of Dent's. I do not expect for my function to improve year over year, but if I can potentially delay a transplant for a few years to up to 10+ years I think it is worth trying. This option was also not recommended to me until 2 years after I had been on the transplant list and only once my creatinine surpassed 4.0 one month. Additionally, since the condition is not that well known throughout the nephrology community it was not until around the time I was put on the list that the doctors started to act with a sense of urgency. Looking back, it is shocking to me that I did not receive more proactive treatment earlier on in my life that could have potentially slowed down the progression of the condition. I truly feel that if I was educated at the likely outcome of kidney failure in patients with Dent's, along with the potential benefits of a low protein diet earlier in life that I could have added years onto my kidney's "life". As I have said before it is shocking to me that my creatinine and GFR are in a better spot than they were last year (3.3 currently vs. 4.1 Nov 2011), and I believe the diet change I made is 100% responsible. I have not made any other changes in my life, besides this. I would really like to hear if any other patients have success with this, so we can have more than one data point of success.

Good Afternoon, I wanted to follow up on this ongoing discussion and let everyone know that my most recent labs came back with a creatinine of 3.2, this is down from 3.3 in early December. Have not had any lifestyle changes, but continue to follow the low protein vegetarian diet daily. In speaking to my transplant coordinator at Northwestern Hospital, she mentioned to me this morning that they discuss my results monthly as they come in the monthly transplant meeting, and continue to be surprised by the changes. Still no idea if this is a long term fix or if the diet is solely responsible for this, but have now seen my Creatinine drop from the low 4's to the 3's in about 12 months. I'm happy to give anyone more info on what Im' doing.

I am really glad to hear you are doing so well. I would be very excited to include you in, at least part of my study, which will entail analyzing nutritional intake of patients and measuring some standard as well as specific new hormones involved with Dent. Although you are out of the curb, it would be interesting to see how your diet effects those parameters. I have submitted the protocol to NIH for final approval of wording, then I can submit to Mayo IRB (Institutional Review Board). Unfortunatelly, these birocratic things take a while but it would be really cool (if you will be interested) to have you do the blood and urine tests while you are at Mayo in June! Alternatively, blood could be drawn locally and urine collected, then shipped to Mayo. I'll keep you posted. I could not resist adding my ideas to your post, but your good results encourage me to do my work as well! Good luck and good health to you! Lada

Lada, I'd certainly be willing to help your study anyway I can. Additionally, I'll be glad to give blood, urine, etc when I'm at Mayo in June. Please continue to share your thoughts with me on the diet I am doing and if you think there is anything else I can do to improve things. I still have not located the Ketoacid supplements you speak of, but other than that please let me know. Thanks

Thanks so much! Can I nudge you about the registry as well? Hate to be pushy, it's not my personality, but this is the only way. Lada

I thought my doc sent everything over. I sent the consent forms in a month or so ago, so will follow up with them tomorrow.

Hi, I have a 13 year old son with Dent's, and our family is largely vegetarian. What little meat my son eats is antibiotic free--factory farm meat concerns me on many levels, but particularly for my son. I know that I should not restrict the protein of a growing boy...however, I wondered if there were any potential benefits of plant based protein? I do worry that he gets more oxalate as a result. I was told to follow a low oxalate diet early on, but then a subsequent nephrologist said that I didn't need to worry about it.

There is not enough information, however there is some indication that plant protein might be more beneficial for the patients with chronic kidney disease. We don't know enough to give recommendations. If his urine oxalate was not high, than his diet was fine. It all depends on how much oxalate there is in the urine, reflecting how much he eats. I am very interested in effect of diet on Dent disease, especially since Jay had good results. In my upcoming study I plan to do diet diary lasting 1 week which will be analyzed by a nutritionist and collect urine afterwords. We did not study the effect of diet in Dent patients at all. Are you enrolled in our registry? Lada

Hello Lada, No, I would like to enroll my son in the registry. I am very interested in diet. My son eats almost no processed foods, almost all organic fruits and vegetables, and he is on his way to being a vegetarian. He does drink dairy. Valerie VHamilton@maine.rr.com

Great! I have proceeded your email to our research coordinators who will contact you. We have a Patient Day organized at Mayo clinic on 06/08. Let me know if you are interested in coming. Jay will come to meeting and we can have "discussions of diet". More and more we are finding out that we really ARE what we eat. It serms that food has the ability to change gene expression! Vegetarian diet gains more grounds as a good diet choice, certainly avoiding daily meat consumption makes sense. Lada

Jay, This is Cathy Forrest, I sent you an email Monday the 20th, did you receive it ? Talk to you soon.

Hi Jay. Nice meeting you last weekend, although it was very short. I was hoping you would do the walk to have more time to chat. Would have loved to get to know your mom too! Anyway, I was rereading this topic, and find that your history is very similar to Daniel's, my son. You also take allopurinol, which does not seem to be the case for others. Do you know why?

Yes, I thought that was interesting too! Does he have increased uric acid in the urine? Lada

Let me check (if we have any lab results that show uric acid). Another question: Jay says he increased his GFR (with diet change). That is wonderful and a good example to follow! What I don't understand is that I thought once the kidneys were damaged (with calcium deposts?), this damage cannot be reversed. I thought you could only try to maintain and slow down the progression. So how did Jay manage to improve his condtion (increase his GFR)?

Hi Jay and everyone. Just wondering how you are doing, Jay? Daniel has been following your example, dietwise, for the last few months, so it will be interesting to see if his numbers also improve. He does quarterly lab tests, next one will be in November. One question I have for you is about Lipitor. Do you still take it? The doctor started Daniel on Crestor, another cholesterol lowering med, August 2012. I heard last week of someone not needing these meds after becoming vegetarian. According to this person his cholesterol went down naturally because of the change of diet, so I was wondering if you have had any change of meds since you cut meats, etc.

Minu, Sorry fo the delayed response. It has been a few months since I have visited Rare Share. So far things are still going well and my numbers are staying stable. I got my labs done in late September and my creatine was around 3.3, which is inline with where things have been over the past few years. So far thing continue to remain stable, which is success in my eyes. I should be getting some more labs done next week, so can report back then. As for the lipitor my doctor told me I could come off of this whenever I want as my cholestral plumeted after the diet change. To be honest, I have stayed on it as kind of just like a safety need, but at this point I think it makes total sense for me to come off of it. In general my meds have not changed since I started this diet, but I can eliminate lipitor. Hope this helps and keep me posted on Daniels results. Thanks

Good Morning, I wanted to follow up to this ongoing chain with an update from my recent labs. I've been continuing the same diet that I've been on, which consists of low protein consumption by eliminating all meat and fish, and greatly reducing dairy and egg consumption. My labs yesterday came back wtih a creatinine of 3.11, which I believe is the lower level I've been at in years (not sure how many years, but I would guesss at least 8). This is also down from 3.3 when I got labs done in early October It's small numbers we are talking about, but I think it is important to point out that over the last few years that I have been on this diet my creatinine has reduced from 4.3 to now 3.1. Keeping things stable or slowing down progression in my eyes would have been a success, so I am certainly happy with the way the results have been going. If you or a family members has Dent's and is seeing your numbers go in the wrong direction, I would highly recomend at least giving this diet a try. Worse case scenario you decide it isn't the right thing for you and continue following your current diet. It may be a fluke that things are working for me right now, so if anyone else can try it out, it may help have another data point of success with this type of diet.

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Hi all, This is Jay's mom (my claim to fame). I'm just wondering what the status is of the foundation that was discussed at the Mayo meeting last summer, and whether another summer meeting is being planned for 2014. I thought there was some buzz about a Chicago meeting. Thanks.

Hi, The foundation is official. The meeting is taking place in June in Chicago! Check out our Facebook page! We have actively started recruiting for the Phosphorus intervention study which could prove to be safer than thiazide treatment to reduce high calcium in urine and protect kidney function. Only older than 18 and with GFR >40 qualify for intervention but we will be doing measurements only for younger children as well. We are moving forward! We applied for the extension of funding and will find out in June! Lada

Good Morning, I just wanted to give everyone an update that my recent labs came back with a creatine level of 3.21, which is down from 3.3 in February. For the past 6 months my levels have fluctuated between 3.1 - 3.4, so overall seem to be remaining stable.

That is great news, Jay.

Just wanted to give everyone a quick update that as of last Friday my Creatine was down to 3.11, which is about the lowest it's been in quite some time. If anyone has questions on the diet or specific foods I'm eating, I'm happy to share, but personally believe (as does my doctor) that this lifestyle change is having a positive influence on the progression of the condition.

Great news, Jay. Very happy for you! Is your diet change what you shared with us in Chicago? Drastically cutting proteins, specially no meat or dairies? Lots of pasta, rice, other grains,vegetarian dishes, healthy fats? Did your white blood cells go back to normal?

Sorry for the delayed reply. No changes in diet and have kept things basically the same since the meeting in Chicago. White Blood Cell Count went back to normal and the docs believe the cause of the spike was a side affect from the allopurinol that I have been on, so am no longer taking that med.