Worried About My Kidney

[cavernio]

3 months into gluten-free diet, now going back on gluten for the purposes of biopsy and endoscopy. I saw a GI yesterday and he didn't say I had to go back on gluten, but rather said if I wanted the confirmation of the biopsy that I should.

If the majority of my symptoms that I have issues with, mood instability, pain in my left abdomen, fatigue, concentration problems, and bloating, peripheral nerve pain and tingling, had all gone away in the past 3 months of being gluten-free, I probably would have said no. But they didn't. Fatigue and concentration have not improved at all, bloating is practically gone though, and the ever present pain in my abdomen almost went away and then came back in full force when I got the flu a couple weeks ago.

When talking about the pain in my left, I should have mentioned that I think it might be my kidneys, but I didn't. And then he said that he thinks I might have IBS along with celiac disease, which he thinks might be caused by my colon having spasms. Sure, that seems like it might make sense, especially seeing as I tend to get a lot of muscle spasms, and the nerve dmg may be more widespread than just my hands, feet and face. BUT...

The side of the family that I think the celiac gene comes from has lots of kidney issues, which I have told my family doctor about. Grandmother died of kidney cancer, have an aunt who has tumors on her kidneys for 15 years or something now, and an uncle who suffers from kidney stones frequently, cousin who has had kidney and bladder problems since a child who just recently self-diagnosed as celiac or gluten intolerant.

I swear I had a kidney stone a year or so back, pain started in my lower back, thought it was just regular back pain, but it got worse and then when falling asleep that night, if I moved at all I had such shocking pain in my front abdomen. The next morning was fine (or as fine as I ever am), but there was no stone in my urine or anything like that. I have since had a urinanalysis done, and it's been all clear except the possibility that my creatinine might be low/high enough (whatever it has to be) to potentially have kidney issues.

The GI didn't mention kidneys at all when I saw him, and my family doctor just dismisses the possibility.

I'm just finding this whole thing very frustrating. My bf has had ultrasounds and EEG's for problems that don't plague him everyday but he gets them 'just in case'. But oh no, for me its 'just wait until we see what happens when you're gluten-free' and before that just 'excersise more and eat probiotic yogurt' because they thought I was constipated even though I specifically said I wasn't, and now it's 'you probably have IBS', to which we can't do anything but that's what you have. I have NEVER heard of anyone being diagnosed with IBS without having BM issues, which I don't have. (Well, if I have caffeine I can get them, but that's what caffeine DOES, that's one of the effects of the drug)

The whole urinanalysis doesn't even make any sense to me if I'm worried about 1 kidney. It measures overall kidney function of both kidneys. I could theoretically have one be a dessicated black sac sitting in my body and still have a decent urine test. No doctor has yet to mention the overlap of IgA nephropathy and celiac disease yet either. I just found out about that myself today by looking stuff up.

I've also had no one look at my ovaries, (a concern I also mentioned to my family doctor), and ovarian cancer's symptoms are about as vague and match my own symptoms too.

Seriously, how much problem is it for me to have 1 ultrasound? Look at my kidney and my ovary and my colon all at the same time.

I guess I'll just have to settle for a colonoscopy for 'now', 'now' being probably 6 months from now because they're probably booked back that far.

Darned if I know. I don't know why I'm surprised by all the BS that I have to go through. I'M the person who asked the doctor to test me for celiac disease. 5 years of seeing various doctors and no one even mentioned the possibility. And I think he only gave it to me because it was at the walk-in clinic on a friday night b/w xmas and new years and I was like the second last patient he was seeing, and he was in a rush and just wanted me gone because I went in and started rambling off a list of my symptoms and he finally interrupted me and asked 'What do you want?'

[quincy]

  On 3/28/2012 at 1:55 PM, cavernio said:

3 months into gluten-free diet, now going back on gluten for the purposes of biopsy and endoscopy. I saw a GI yesterday and he didn't say I had to go back on gluten, but rather said if I wanted the confirmation of the biopsy that I should.

If the majority of my symptoms that I have issues with, mood instability, pain in my left abdomen, fatigue, concentration problems, and bloating, peripheral nerve pain and tingling, had all gone away in the past 3 months of being gluten-free, I probably would have said no. But they didn't. Fatigue and concentration have not improved at all, bloating is practically gone though, and the ever present pain in my abdomen almost went away and then came back in full force when I got the flu a couple weeks ago.

When talking about the pain in my left, I should have mentioned that I think it might be my kidneys, but I didn't. And then he said that he thinks I might have IBS along with celiac disease, which he thinks might be caused by my colon having spasms. Sure, that seems like it might make sense, especially seeing as I tend to get a lot of muscle spasms, and the nerve dmg may be more widespread than just my hands, feet and face. BUT...

The side of the family that I think the celiac gene comes from has lots of kidney issues, which I have told my family doctor about. Grandmother died of kidney cancer, have an aunt who has tumors on her kidneys for 15 years or something now, and an uncle who suffers from kidney stones frequently, cousin who has had kidney and bladder problems since a child who just recently self-diagnosed as celiac or gluten intolerant.

I swear I had a kidney stone a year or so back, pain started in my lower back, thought it was just regular back pain, but it got worse and then when falling asleep that night, if I moved at all I had such shocking pain in my front abdomen. The next morning was fine (or as fine as I ever am), but there was no stone in my urine or anything like that. I have since had a urinanalysis done, and it's been all clear except the possibility that my creatinine might be low/high enough (whatever it has to be) to potentially have kidney issues.

The GI didn't mention kidneys at all when I saw him, and my family doctor just dismisses the possibility.

I'm just finding this whole thing very frustrating. My bf has had ultrasounds and EEG's for problems that don't plague him everyday but he gets them 'just in case'. But oh no, for me its 'just wait until we see what happens when you're gluten-free' and before that just 'excersise more and eat probiotic yogurt' because they thought I was constipated even though I specifically said I wasn't, and now it's 'you probably have IBS', to which we can't do anything but that's what you have. I have NEVER heard of anyone being diagnosed with IBS without having BM issues, which I don't have. (Well, if I have caffeine I can get them, but that's what caffeine DOES, that's one of the effects of the drug)

The whole urinanalysis doesn't even make any sense to me if I'm worried about 1 kidney. It measures overall kidney function of both kidneys. I could theoretically have one be a dessicated black sac sitting in my body and still have a decent urine test. No doctor has yet to mention the overlap of IgA nephropathy and celiac disease yet either. I just found out about that myself today by looking stuff up.

I've also had no one look at my ovaries, (a concern I also mentioned to my family doctor), and ovarian cancer's symptoms are about as vague and match my own symptoms too.

Seriously, how much problem is it for me to have 1 ultrasound? Look at my kidney and my ovary and my colon all at the same time.

I guess I'll just have to settle for a colonoscopy for 'now', 'now' being probably 6 months from now because they're probably booked back that far.

Darned if I know. I don't know why I'm surprised by all the BS that I have to go through. I'M the person who asked the doctor to test me for celiac disease. 5 years of seeing various doctors and no one even mentioned the possibility. And I think he only gave it to me because it was at the walk-in clinic on a friday night b/w xmas and new years and I was like the second last patient he was seeing, and he was in a rush and just wanted me gone because I went in and started rambling off a list of my symptoms and he finally interrupted me and asked 'What do you want?'

.

sorry to hear about all of the problems you have been having, and lets hope the diagnosis gets resolved soon. I know what you are going through as I have been there. It took months for my upper right quadrant pain to go away after going gluten free. It is true that if your intestine is inflamed or enlarged it will put pressure on your back and its very uncomfortable.

before I was diagnosed with endoscopy I was going to a urologist because of kidney/bladder issues and they sent me for a ct scan first thing. They found several benign cysts on one of my kidneys. perhaps you can go to a urologist to find out about your kidney. keep us updated on your situation. thanks.

[cavernio]

I'll keep it posted. Nothing's going to happen quickly atm though. Waiting for my endoscopy and biopsy right now, and I think/hope I'm going to get a colonoscopy also, which I'm very happy for. Trying to eat lots of calcium to ward off oxalate kidney stones. (Open Original Shared Link)