Not Good

[GlutenWrangler]

Hey Everyone,

I wanted to post this separately from my other thread, just because it's a different subject. I went to see my Nephrologist on Monday. He has been treating me for Loin Pain Hematura Syndrome, which causes my kidney to bleed and causes chronic severe pain. He periodically tests my kidney function, and it has always been perfect. On Monday he told me that my kidney function has dropped to 35%. He told me that I'm developing chronic kidney disease, but not to panic. Obviously I don't need any more problems and I'm scared to death. Could this possibly be linked to my refractory sprue? I just don't understand why this is happening to me. Thanks for your help,

-Brian

[Ursa Major]

Brian, I am sorry you now have another thing to worry about. Could it be the IV feeding? I can't imagine that IV feeding is healthy long-term.

[VioletBlue]

There are other people here with different types and levels of kindey damage. I've participated in a couple threads here on the subject. Perhaps if you posted under related disorders with a heading about Kidney disease you could flush some of them out. I have something called Thin Basement Membrane Disease which is a benign condition that allows protein and blood cells through the filtering membrane of the kidney and out into the urine. Others here have more serious issues.

Violet

Hey Everyone,

I wanted to post this separately from my other thread, just because it's a different subject. I went to see my Nephrologist on Monday. He has been treating me for Loin Pain Hematura Syndrome, which causes my kidney to bleed and causes chronic severe pain. He periodically tests my kidney function, and it has always been perfect. On Monday he told me that my kidney function has dropped to 35%. He told me that I'm developing chronic kidney disease, but not to panic. Obviously I don't need any more problems and I'm scared to death. Could this possibly be linked to my refractory sprue? I just don't understand why this is happening to me. Thanks for your help,

-Brian

[tarnalberry]

I have no advice or suggestions to offer, but wanted to offer *hugs*.

My mother had severe kidney issues, at one point having about 5% function of her kidneys (it was congenital - chronic nephritis), so I know it can be very tough. I hope they find out something soon.

[UR Groovy]

Hey Everyone,

I wanted to post this separately from my other thread, just because it's a different subject. I went to see my Nephrologist on Monday. He has been treating me for Loin Pain Hematura Syndrome, which causes my kidney to bleed and causes chronic severe pain. He periodically tests my kidney function, and it has always been perfect. On Monday he told me that my kidney function has dropped to 35%. He told me that I'm developing chronic kidney disease, but not to panic. Obviously I don't need any more problems and I'm scared to death. Could this possibly be linked to my refractory sprue? I just don't understand why this is happening to me. Thanks for your help,

-Brian

First, (( Hugs ))

There are other people here with different types and levels of kindey damage.

...

I believe I may be one of those people, but I don't think it's much like what you're describing. I have kidney disease, but no loss of kidney function at this point. I wish I had some kind of answer. I know you've had your struggles lately.

Take care of yourself.

k

[num1habsfan]

I don't really have any advice, but give you lotsss of *HUGS*

~ Lisa ~

[GlutenWrangler]

Thanks everyone. I'm having a couple more tests done on Friday. I just don't understand how I could go from 100% to 35% when seemingly nothing has changed. I really didn't think it could get any worse than it already was. This is just ridiculous. Does anyone know if kidney function ever rises back up to normal after it has been down so low? I guess I should start researching kidney disease. Thanks again,

-Brian

[confusedks]

Brian,

Ugh, I am so sorry again for you! This is just crazy! Have you heard anything about your Lyme tests. I have no idea if this could be related, but it may be, since Lyme is a multi-systemic illness. It affects everyone differently. Also, could it be the IV nutrition? I agree with Ursa, it can't be good for you long term.

***Hugs!*** to you though! I hope you are able to figure this out soon!

[GlutenWrangler]

I haven't received the Lyme results yet. I should get them next week, if they are ready. I'm not sure if the IV nutrition would cause such a dramatic loss in kidney function. My nephrologist told me that sometimes kidney function drops to about 70% on IV nutrition, but at half that level, there has to be something else going on. The main risk of IV nutrition is liver damage, but my liver has been fine. I have no idea what could have caused this.

-Brian

[Rachel--24]

This is just crazy! Have you heard anything about your Lyme tests. I have no idea if this could be related, but it may be, since Lyme is a multi-systemic illness. It affects everyone differently

Yes...Lyme can cause damage to the kidneys...either directly or indirectly. The bacteria can invade any organ in the body. Also, Lyme impairs detoxification...which causes mercury (and other toxins) to accumulate....this puts a great deal of stress on the liver, kidneys, etc. It can cause damage to these organs.

[JNBunnie1]

Yes...Lyme can cause damage to the kidneys...either directly or indirectly. The bacteria can invade any organ in the body. Also, Lyme impairs detoxification...which causes mercury (and other toxins) to accumulate....this puts a great deal of stress on the liver, kidneys, etc. It can cause damage to these organs.

I know this is probably unrelated, but when my father had leukemia, his kidney function was down to 20 % at the onset of the disease (how do they figure out those numbers, anyway?) But it came back up once his system was stabilized. So decreased kidney function is not necessarily a result of kidney disease and not necessarily permanent. If that helps. You probably don't have leukemia, but something else could have caused this particular blip.

[Judyin Philly]

Dear Brian

No insights...........I'm sorry.

But lots and lots of hugs and prayers for you to find some answers and some relief and healing

judy

[Glutenfreefamily]

Im sorry

Im sure you have had this checked but have they checked your prostate? My cousin had an enlarged prostate and it caused kidney functioning problems. Although you seem a bit young for that but you never know.

I hope they can figure it out for you soon.

[GlutenWrangler]

I should get my Lyme tests next week. Who knows if the lab that was used is reliable though. I'll have to find out when I get the results. But I'm not putting much stock in the results when they come back.

I've had my prostate checked pretty recently, and it was normal. Unless something has changed from June until now.

It makes sense that leukemia would decrease kidney function. I don't know if I've ever been tested for it. I was screened for cancer in my GI tract, but outside of that, I don't know. I figured that loss of kidney function wasn't limited to kidney disease, but I think there are other factors which led my nephrologist to believe that I'm developing chronic kidney disease. He is a kidney specialist, and he ran a very thorough 24 urine test along with multiple blood tests. I just did another blood test today along with another urine test. I see my nephrologist again on February 25th. We'll see what those tests say. I just hope my kidney function doesn't drop any more. It's definitely a scary thing to hear.

-Brian

[ravenwoodglass]

I should get my Lyme tests next week. Who knows if the lab that was used is reliable though. I'll have to find out when I get the results. But I'm not putting much stock in the results when they come back.

I've had my prostate checked pretty recently, and it was normal. Unless something has changed from June until now.

It makes sense that leukemia would decrease kidney function. I don't know if I've ever been tested for it. I was screened for cancer in my GI tract, but outside of that, I don't know. I figured that loss of kidney function wasn't limited to kidney disease, but I think there are other factors which led my nephrologist to believe that I'm developing chronic kidney disease. He is a kidney specialist, and he ran a very thorough 24 urine test along with multiple blood tests. I just did another blood test today along with another urine test. I see my nephrologist again on February 25th. We'll see what those tests say. I just hope my kidney function doesn't drop any more. It's definitely a scary thing to hear.

-Brian

Just to set you at ease a bit.... Leukemia is one disease that shows up very well in blood tests, they would have most likely found it by now if that was a possibility. It would show up even in routine tests on your blood through results in your red and white blood cell count.

The loss of kidney function could be due to any number of different things and it sounds like you nephrologist is on top of it. I hope things get figured out soon.

[GlutenWrangler]

I'm glad that leukemia is easy to find. My blood is tested every week because of the IV nutrition, so the doctors would definitely know if there were any abnormalities. But there are many other forms of cancer, and I'm sure I haven't been tested for most of them. They said they ruled out cancer in my GI tract, but how is that possible when they have no way of checking the entire small intestine? There's no scope for that. I'm lucky to have such a great Nephrologist, but to figure this out, I need to have my other doctors follow suit as well. Thanks for your help,

-Brian

[Judyin Philly]

Hi Brian

Glad to see your posting and i'm following your progress toward finding answers.

hang in there

Judy

[Joni63]

Hi Brian,

Sorry to hear about your kidneys. I really hope the Doctor's can figure it out for you quickly. (((hugs)))

[JNBunnie1]

I'm glad that leukemia is easy to find. My blood is tested every week because of the IV nutrition, so the doctors would definitely know if there were any abnormalities. But there are many other forms of cancer, and I'm sure I haven't been tested for most of them. They said they ruled out cancer in my GI tract, but how is that possible when they have no way of checking the entire small intestine? There's no scope for that. I'm lucky to have such a great Nephrologist, but to figure this out, I need to have my other doctors follow suit as well. Thanks for your help,

-Brian

To answer your question, as far as I know, whenever there is any kind of malignant (growing) cancer in the system, your blood tests will come back with some abnormalities. Leukemia is really quite easy to detect, my father's system only got so degraded because he was too stubborn to go to the doctor, insisting it was the flu or something. By the time they got him into the hospital his heart was failing, his kidneys were failing, his lungs were messed up, because his body was allowed to destabilize. So basically, if it was cancer of anything other than the kidneys (which they've already ruled out), you'd know about it. I was just trying to give you an example of how kidney function decrease can be because of different things, didn't mean to scare you!

[GlutenWrangler]

JNBunnie,

No don't worry, I didn't think you were trying to scare me. I would hope that cancer would show up in blood tests. But I've seen on medical shows that sometimes tumors can be incredibly hard to find, and sometimes they are even found on accident, with no blood abnormalities. It's that type of thing that scares me. But I would hope that something would show up at this point if it was there.

-Brian

[JNBunnie1]

JNBunnie,

No don't worry, I didn't think you were trying to scare me. I would hope that cancer would show up in blood tests. But I've seen on medical shows that sometimes tumors can be incredibly hard to find, and sometimes they are even found on accident, with no blood abnormalities. It's that type of thing that scares me. But I would hope that something would show up at this point if it was there.

-Brian

Yeah, you'd figure that anything that affected your kidney function that much would be fairly easily detected.

[Judyin Philly]

Hi Brian

See your also getting some good advice on the SOD forum. I don't know what we'd do without these sometimes.......so many caring \people who want to help.

Judy

[sickchick]

Good luck to you Brian.

[YoloGx]

Just to set you at ease a bit.... Leukemia is one disease that shows up very well in blood tests, they would have most likely found it by now if that was a possibility. It would show up even in routine tests on your blood through results in your red and white blood cell count.

The loss of kidney function could be due to any number of different things and it sounds like you nephrologist is on top of it. I hope things get figured out soon.

Hi Brian, Ravenwood and All,

From what I have read elsewhere Celiac etc. can cause or go along with this whole malabsorption problem and difficulty dealing with carbs and proteins that then messes up your kidneys and liver as well as nervous system. Its like a whle condition that goes together. Thus again I want to suggest the importance of taking more absorbable Co-enzyme B vitamins that bypass the liver and go directly in your blood stream. This also relieves the kidneys of having to work so hard since the B vitamins help one properly make use of carbs and proteins without them oging toxic on one. Vitamin D is also important here and fibronyltic agents to keep down scar tissue such as bromelain/papain and marshmallow root to take down inflammation in your kidneys as well as your intestines.

The herbs I suggested previously should be a help (dandelion, burdock, oregon grape root, uva ursi, buchu, corn silk, marhsmallow root--I underlined the most important ones though pipsissiwa is good too--and the rest).

Why not try them? It turned around my kidney failure which as I said started with inflammation, not the other way around, so its much like what you are experiencing I think. I now no longer have to take antibiotics though I still take my herbs pretty frequently depending on how much stress I have or if I am exposed to toxins or just because etc. In other words I take them whenever I feel some soreness (i.e, thus inflamation) in my side--and then it makes it go away. I have suggested this to others and it always has worked for them too.

Previous to taking the herbs my kidneys were rapidly losing their function. I lost 1/2 of my right kidney in a period of one year when I was 23 due to repeated attacks and ignorance.

You are on a liquid diet as well as the IV--so you still could do the liquid herbs.--i.e., the whole herbs cooked and strained and then with water added.

Plain bottled unsweetened concentrated cranberry juice -- then sweetened by you perhaps with (non-sugar) stevia with water added will also help. Trader Joe's is a good source for both the cranberry juice and plain stevia.

Meanwhile I have been told after I took lipid blood tests (though I really didn't even need to be told given my past difficulties) that sugar is poisonous to my system even though I don't have diabetes.

So maybe you might want to rethink the long term effects of the sugar IV diet. It really might be harming/stressing your kidneys despite what your doctors say. The doctors here in the USA you have to remember are only just starting to be aware of celiac and related conditions and the things it can do to one. If it were me I would do what has worked for others even if its just on a trial basis especially since here the doctors are in the dark on this one.

Thus when/if you start to eat real food again I suggest you start with home-made organic vegetable juice. Then slowly add other things like maybe cooked up slippery elm and after that add organic chicken bone broth etc. made from scratch etc. (assuming chicken is OK for you) -- adding one item at a time every 2 days or so along with some digestive enzymes (again bromelain/papain seems the safest to start with)--and take notes: digestive complaints, note kidney inflammation/or not, take the coco pulse test etc.

Yolo

[GlutenWrangler]

Regardless to whether the sugar IV diet is bad or good, it really doesn't matter because I don't have a choice. There is no alternative at this point, or in the foreseeable future. Without it, I would die.

As for the vitamins, I get all the vitamins I need through the IV. That includes vitamin D and B-vitamins. I have no deficiencies at this point.

I have thought about trying the herbs, but a few things have held me back. First, I have a very hard time tolerating any sort of supplements. I have tried herbal tea with some pretty distressing effects. I don't want to deal with any more discomfort. Second, my system is in very bad shape, and I just don't feel comfortable adding things without approval from my doctors. Mostly because I have a multi-system illness, and I would only feel comfortable trying it with approval from all of my doctors so that they would know what's going on.

I don't think that doctors are in the dark about the various effects of Celiac Disease. Good doctors are very well-versed in its effects. A few of my doctors surprised me in how much they knew. And I would trust US doctors over international doctors any day when it comes to Celiac Disease.

Also, as much as I would like to start with vegetable juice and chicken bone broth, it turns out I'm allergic to both. I'm allergic to chicken and turkey, and most vegetables. I'm pretty much allergic to everything. That's mainly why I really have no idea where I would start. It's also why I'm pretty much locked in IV Nutrition prison. That, and the severe abdominal pain caused by Sphincter of Oddi Dysfunction. I really don't see any way out at this point, and unfortunate as that sounds.

Anyway I truly appreciate your recommendations. It's just something I'll have to talk to my doctor about first though. I have a doctor who practices in part with alternative medicine, so I'll she what she has to say. Thanks,

-Brian