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icelandgirl

I have kidney stones...spent last night at the ER

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Icelandgirl.......I am late to this topic as I have been sick with a horrible virus this week.  But I have a good article at work on kidney stones and celiac disease and why they occur that you might find interesting.  I hope to be back to work tomorrow so I will post it for you to see.  Seems other people here have the problem too.

My husband had a bout with them a long time ago now.  One was huge. He was able to pass them on his own but not without excruciating pain. The ER doc said they can be more painful than childbirth because they have these spikes on them that grab and tear tissue as they exit the body.  I am sure you can relate to that! Hubby went gluten free because of me quite awhile ago and has never had another one again.  He cannot take calcium supplements but was told to get his calcium just from diet alone. Did they test the stones from you to see what kind they are?

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Hi Gemini and (((hugs))))...

So good to hear from you.  I hope you are feeling better?

I would love any information!   No one has chimed in saying that they've had stones.  I'm so confused.  You read one thing and it says don't eat strawberries and another says strawberries are fine.  Lots of conflicting food lists.  I have an appointment with a urologist on the 4th...ugh.  I like Dr's almost as much as you do.   Lol!! Hopefully he can shed some light.

Unfortunately my stones weren't tested because I peed them straight into the toilet right after the ultrasound checking for ovarian torsion.  The tech saw a swollen ureter in the image, left to go ask the Dr to order a kidney ultrasound and I felt like I was going to pee myself.  Went to the bathroom, and there they were...these little rock crystals  I motioned the tech to come in and she said, yep, those are kidney stones.  I took a picture to show the Dr and nurse and they confirmed it.  The Dr said most people have the oxalate stones and that's what we're going with for now.

So, I'm drinking a ton of water, have added some acidity in the form of oj and lemon juice and am adding a bit of calcium in the way of food.  This was all suggested by the ER doc.  I consistently see that spinach is the highest oxalate food so I've cut that out,  I'm also cutting back on nuts and chocolate, sadly.  Other than that I'm waiting.

I wasn't doing much dairy...just a splash of cream in my coffee and a little ice cream...I need to add in more foods that are rich in calcium.  So far my oj has calcium added and that's about it.

I'm so glad to hear that your husband never had another attack!  My worry is that one or more of the other stones in my kidneys will make their way down.  The pain was bad...not as bad as childbirth for me, but I've heard it talked about in that way as well.

Thanks again for any input!

 

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http://glutenfreeworks.com/blog/2010/11/17/kidney-stones-renal-calculus-causes-treatment-in-celiac-disease/

I have to admit, I do not like the list of foods to avoid.  Chocolate?????????  Tea????????????  Are they serious?????????

You may want to do more research on that because there may be more up to date information on that now.  This article really explains what happens with stones when you have them from Celiac Disease.  Getting more calcium from diet is crucial to avoiding them. That's what my husband did. He does not take calcium supplements....just dietary calcium.  I hope this helps.

God....the dreaded urologist. Just be careful about them wanting to scope you. They love doing that and it might not be necessary right now or ever, for that matter.  Work on your diet and drink tons of fluids for now because it does help.  My husband had multiple attacks but funny enough, once he was gluten-free for awhile, never had another one again and it's been at least 7-8 years now.  I think he did have a gluten problem himself but they screwed up his testing TWICE so he refused to go back again.  He does very well with the diet.

I am getting better but still not 100%.  This virus is a kicker.  High fevers, loss of appetite, chills, fatigue from hell. So many people here in New England have it.  I lost some weight so now have to gain it back again and that is not easy when your appetite is off. Everything tastes bland. My AI system ramped up to fight the virus so then my symptoms from the AI problems ramped up also.  The past week has not been fun but I am sure, eventually, I will feel normal again.  Thank you for asking!  :)

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Hi Gemini,

You are a sweetheart to post this!  Thank you...very interesting.   I'm 2 years out from diagnosis...wonder why I'm getting them now?   Of course my diagnosis did lead to me giving up dairy completely for a while and being very dairy light since.  I wonder if this is what did me in?  Nuts are on the list too and I've been eating 2 servings of cashews a day for a while.  I needed something to stop the weight loss and they really helped...plus my gut could tolerate them.  I'm a little lost food wise now.  I did have some wonderful cheddar with my dinner last night and enjoyed every bite!  

I so dread the urologist.   I don't want any scope...I just don't want any more kidney stones!  I'm going to tell him that, but I have anxiety already. 

You poor thing...you definitely don't need to lose any weight.  I hope that you feel lots better over type weekend and get your appetite back!

Thank you so much for the help!

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There is no reason to do a scope if you have had the imaging and know you have a kidney stone.  My husband was scoped initially because when he had the kidney stones, he first had a bout with blood in his urine and I think they wanted to make sure there was nothing serious going on.  Well.....you can sometimes bleed with a stone because those little spikes tear up tissue and cause bleeding. So, if you really don't want one, stand firm.  I am not going to lie...they are not entirely pleasant but I think it's worse for guys.......they have a longer tube!  :o

I would suspect that these stones formed a while ago when you were either still undiagnosed or just diagnosed so give it time.  If you correct the original problem, as stated in the article, then maybe this will be it.  My husband never has had another bout with them and it's been a long time.  He eats dietary calcium for his bones and stays gluten-free.  Eating low oxalate didn't last long, he just cut out large hits of it and now, doesn't eat low oxalate intentionally. 

 

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34 minutes ago, Gemini said:

There is no reason to do a scope if you have had the imaging and know you have a kidney stone.  My husband was scoped initially because when he had the kidney stones, he first had a bout with blood in his urine and I think they wanted to make sure there was nothing serious going on.  Well.....you can sometimes bleed with a stone because those little spikes tear up tissue and cause bleeding. So, if you really don't want one, stand firm.  I am not going to lie...they are not entirely pleasant but I think it's worse for guys.......they have a longer tube!  :o

I would suspect that these stones formed a while ago when you were either still undiagnosed or just diagnosed so give it time.  If you correct the original problem, as stated in the article, then maybe this will be it.  My husband never has had another bout with them and it's been a long time.  He eats dietary calcium for his bones and stays gluten-free.  Eating low oxalate didn't last long, he just cut out large hits of it and now, doesn't eat low oxalate intentionally. 

 

Thanks Gemini...

It is reassuring that your husband hasn't had an episode in all these years.  I'm drinking so much water and am in the bathroom peeing constantly.  Lol!  I know that where I live at high altitude, it's also quite dry...apparently dehydration is a factor.  I thought I was drinking enough water, but see now with the amount I'm drinking that it wasn't. 

Did your husband end up in the hospital each time?  Or did he know what was happening and just wait it out?  Im wonder if they can shrink and go away without pain...that would be so nice, wouldn't it?

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No, he was never admitted to the hospital but he spent some time in the ER, like you did.  They ended up giving him morphine, the pain was so intense.  The stones he had were on the large size. Sometimes they attach to the inside of the kidney and stay there. You never know with those things.

Yeah, you almost have to drown your kidneys with water.......not an easy thing to do.  A little easier at altitude because of the dryness, you crave more water.  This may very well be an isolated incident, never to happen again.  My husband had 2-3 episodes and then.........gone.  No more problems to date.

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Hi. I'd like to weigh in-- mostly whine- although I was unable to get into that article cited above. I'll try later. I have had kidney stones which started at age 15, recurred at 30 y.o. and later around 50 y.o.

More recently I have had them again more frequently but not at the pain levels I've had in the past --a 10. The pain range has been more around 8 and I have just drunk a gallon or more of water to get them out.  Gluten free mostly since 2008 but became serious only last year and now am having kidney stone symptoms. Not sure if there is a correlation.

The real point I want to make is about diet. I eat a largely vegetarian diet which includes beans,  greens, nuts and I like tea. Up until a few weeks ago I ate ice cream almost daily (need to stop for weight reasons) Now for breakfast I eat yogurt with berries. I am told that virtually everything I eat is not advisable--certainly not all that dairy.  I have decided I am tired of being told that all my food is bad for me when I eat better than the majority of people. I have made the decision to eat what I choose with the exception of gluten since that is the most serious health issue and can lead to other diseases I'd rather not have.

Finally, I was interested that you drink lemon juice. I have  started and use apple cider vinegar  as well. The only calcium supplement I now use is CalMag. Maybe that's not advisable.

Must close as I am about to lose connection.

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Hi Seeking...fellow kidney stone sufferer...

I'm sorry to hear that you are have recurring bouts with these dreadful stones.  Although I've physically recovered from mine mentally I'm fragile.  I'm scared it's going to happen again and I don't want it to!

The ER doc recommended lemon juice or lemonade.  I've read some articles that seem to support lemon juice in aiding with getting rid of kidney stones.  So I'm hoping! 

I wish you well...hope you don't have another attack!

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Hi Iceland girl, very timely discussion for me.  I was diagnosed celiac nearly 5 years ago and have been on a strict gluten-free diet since.  I have always cooked a lot, so the diet change was not so bad.  About 4 weeks ago, I was at work on a conference call had had a huge pain on my right side, nausea, sweats, ended up at urgent care and with trace blood in urine, they suspected stones.  Follow up with my primary doc and subsequent ultrasounds, she confirmed that I had kidney stones.  I have appointment with urologist on the 4/12.  Interestingly, last week I passed a stone in my urine, fortunately not painful, but sure felt weird traveling to the toilet.  I saved it to take on the 12th.

i hate reading about more diet changes as most of the references previously posted are in my diet.  I hope this conversation continues to share findings and dietary suggestions

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Hi ArtG!

I'm so glad you responded, but sorry you are going through the same thing.  I literally feel your pain!

You say stones...do you have more than one?  You are lucky to have yours for analysis.   I don't but wish that I did.

I'm also not in any way looking forward to more dietary changes...seriously! 

I'd love to hear what happens with your appointment...I will report back after mine on Monday.

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Just an update on me...Today is my 2 weekiversary of my kidney stone drama.  I had some twinges in my back today and of course felt anxious.  Just a little bit ago I went to the bathroom and after saw a small sliver of stone with some sand trailing it.  I scooped it out to take to the urologist on Monday.  Ugh.  I'm afraid these stones aren't done with me yet.:(

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16 hours ago, icelandgirl said:

Just an update on me...Today is my 2 weekiversary of my kidney stone drama.  I had some twinges in my back today and of course felt anxious.  Just a little bit ago I went to the bathroom and after saw a small sliver of stone with some sand trailing it.  I scooped it out to take to the urologist on Monday.  Ugh.  I'm afraid these stones aren't done with me yet.:(

So very sorry you are having this continued stress!  But...sooooo glad you have "samples" of those darn buggers to take for analysis.  HA!  You got them!  Maybe now you can alter your diet to defeat them!  You go girl!

Hugs, hugs, etc.

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I've found an interesting article that might help. This article looks at Vitamin B6 deficiency as a cause of kidney stone formation.

http://www.ncbi.nlm.nih.gov/pubmed/10203369

I believe that many people with Celiac Disease are deficient in B vitamins.  The area of the small intestine that is damaged by Celiac Disease is the same area that absorbs B vitamins and fat soluble vitamins (A, D, E, and K).  Doctors are not familiar with deficiency diseases because "there's no money in prescribing vitamins". Doctors do recommend B vitamins for chronic alcoholics because of malabsorption.  Celiacs have malabsorption, too.  

I speak from experience.  I've been diagnosed with multiple vitamin deficiencies.  Please, please, please try taking Vitamin B supplements.  At least talk to your doctor about the possibility of vitamin deficiencies.  

 

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6 hours ago, manasota said:

So very sorry you are having this continued stress!  But...sooooo glad you have "samples" of those darn buggers to take for analysis.  HA!  You got them!  Maybe now you can alter your diet to defeat them!  You go girl!

Hugs, hugs, etc.

Thank you so much for the support Manasota!!  ((((((Hugs)))))) back.

Unfortunately my piece of stone is lost....gone.  Urgh!  When I fished it out, I put it on top of a piece of tissue on the toilet tank to dry out.  Then washed my hands and went on about my business.   Well I should have left a sign saying, "kidney stone...don't throw out!"  Someone in my family thought it was a dirty tissue and threw it out...sigh.

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2 hours ago, knitty kitty said:

I've found an interesting article that might help. This article looks at Vitamin B6 deficiency as a cause of kidney stone formation.

http://www.ncbi.nlm.nih.gov/pubmed/10203369

I believe that many people with Celiac Disease are deficient in B vitamins.  The area of the small intestine that is damaged by Celiac Disease is the same area that absorbs B vitamins and fat soluble vitamins (A, D, E, and K).  Doctors are not familiar with deficiency diseases because "there's no money in prescribing vitamins". Doctors do recommend B vitamins for chronic alcoholics because of malabsorption.  Celiacs have malabsorption, too.  

I speak from experience.  I've been diagnosed with multiple vitamin deficiencies.  Please, please, please try taking Vitamin B supplements.  At least talk to your doctor about the possibility of vitamin deficiencies.  

 

Thank you kitty,

Interesting read for sure...hmmm...I take a multi vitamin every day that has 100% of B6.  I wonder if it's not enough.  I will definitely talk to the urologist on Monday, but I don't hold out much hope.  My experience with most Dr's is that they never think any kind of food or vitamins could be an issue.

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I agree that most doctors never think food or vitamins could be an issue.  That's why so many of us suffer for years before diagnosis, and afterwards as we slowly heal.  

If you're deficient, you need more than the daily requirement to make up for it.  

Theories exist that state the Recommended Daily Allowance is too low for many vitamins and that many people suffer from subclinical deficiencies unknowingly.

Gluten free foods are not required to be enriched with vitamins like their gluten containing counterparts.

I encourage you to talk to your doctor about taking additional B6.  

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Sorry you lost your stone IG and I hope that the urologist is helpful.  In reply to your previous question, my primary left me a message after the ultrasound that I had stones.  I have no idea whether the stone I retrieved is the same one that caused me the pain a few weeks earlier, I don't know their exit strategy!  I hopefully will get to see the ultrasounds when I see the urologist on the 12th, i have not had any recurrence at this point. 

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Another update...I want to the urologist today.  I liked him...a little goofy, but enjoyable.

I have 4 stones in each kidney.  1 large one on each side that he doesn't believe I could pass and 3 small that he thinks I could.  Sigh...he sent me for bloodwork and an x-ray.  The x-ray will help him get a different look at the stones from the CT. I am also going to be doing a 24 hour using collection so that they can analyze what's going on.  With this many stones there's likely something more than just what I eat.

As soon as he saw celiac on my paperwork he talked about how it causes malabsorption and predisposes a person to stones.  So there ya go...possible just the celiac.  But I do have at least 2 big ones in there.  I'm going back in 6 weeks so that all of the testing and analysis is done and then we'll talk about what to do next.  He mentioned some kind of shock wave therapy to break up the large stones.  Fun!

Oh, he also said not to change my diet so that they can get an accurate look at my urine to see what's up.  Of course I'd already changed things, desperately hoping to avoid this again.  So, I'm trying now to go back to what I did before and will savor every bite of chocolate.  And he rely wishes that my stones from the ER had been fished out so that they could be analyzed...so for anyone else...save your stones!

That's it for me...

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Iceland Girl, well, I guess it is good to know something definitive.  When I got my blood work done a couple of weeks ago, the guy drawing my blood said he had kidney stones and his urologist performed the shock wave therapy to break up his stones.  I did not ask him any questions but he was obviously pleased with the results and offered  me the name of his urologist. Enjoy the chocolate!

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20 hours ago, icelandgirl said:

Another update...I want to the urologist today.  I liked him...a little goofy, but enjoyable.

I have 4 stones in each kidney.  1 large one on each side that he doesn't believe I could pass and 3 small that he thinks I could.  Sigh...he sent me for bloodwork and an x-ray.  The x-ray will help him get a different look at the stones from the CT. I am also going to be doing a 24 hour using collection so that they can analyze what's going on.  With this many stones there's likely something more than just what I eat.

As soon as he saw celiac on my paperwork he talked about how it causes malabsorption and predisposes a person to stones.  So there ya go...possible just the celiac.  But I do have at least 2 big ones in there.  I'm going back in 6 weeks so that all of the testing and analysis is done and then we'll talk about what to do next.  He mentioned some kind of shock wave therapy to break up the large stones.  Fun!

Oh, he also said not to change my diet so that they can get an accurate look at my urine to see what's up.  Of course I'd already changed things, desperately hoping to avoid this again.  So, I'm trying now to go back to what I did before and will savor every bite of chocolate.  And he rely wishes that my stones from the ER had been fished out so that they could be analyzed...so for anyone else...save your stones!

That's it for me...

HI icelandgirl!

Sometimes a goofy doctor is a very good thing.  Might help you to relax during the upcoming procedure.  I actually know somebody who had that procedure done.  It was a couple decades ago and my friend was in his 30's; but he said it went VERY WELL!  He said it was easy and not uncomfortable at all.  He was told to bring swimming trunks and he was put into a tub of warm water (think hottub).  Pretty sure they gave some relaxation meds to help keep him from moving.  They "zapped" him & that was all there was to it.  I don't believe he felt a thing.  Pretty sure that was the end of those darn stones.  Just peed 'em out!  So, if the procedure's the same, they have lots of experience doing it.  No pain, no problem.  Trust it will be the same for you!

Have extra chocolate for me!  More hugs!

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15 hours ago, ArtG said:

Iceland Girl, well, I guess it is good to know something definitive.  When I got my blood work done a couple of weeks ago, the guy drawing my blood said he had kidney stones and his urologist performed the shock wave therapy to break up his stones.  I did not ask him any questions but he was obviously pleased with the results and offered  me the name of his urologist. Enjoy the chocolate!

Hi ArtG, 

That's good to know.  My grandfather apparently had it done and said it was painful.  I'm ordering my urine collection jug today...so crazy. 

It's oddly comforting to know that someone else is in the same position as I am with these stones.  Please update me after your appointment next week?

Also, do you feel anxiety about the pain coming back?  I do and it's super annoying. 

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55 minutes ago, manasota said:

HI icelandgirl!

Sometimes a goofy doctor is a very good thing.  Might help you to relax during the upcoming procedure.  I actually know somebody who had that procedure done.  It was a couple decades ago and my friend was in his 30's; but he said it went VERY WELL!  He said it was easy and not uncomfortable at all.  He was told to bring swimming trunks and he was put into a tub of warm water (think hottub).  Pretty sure they gave some relaxation meds to help keep him from moving.  They "zapped" him & that was all there was to it.  I don't believe he felt a thing.  Pretty sure that was the end of those darn stones.  Just peed 'em out!  So, if the procedure's the same, they have lots of experience doing it.  No pain, no problem.  Trust it will be the same for you!

Have extra chocolate for me!  More hugs!

Hi Manasota!

Thank you so much for all the support!  It is indeed needed.  I'm enjoying some chocolate just for you as I type.  Lol!

The Dr was great.  He made sure to let me know that this wasn't my fault and I didn't cause it...which I was scared that I did.

It's good to hear your friend's story...thank you for sharing!

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