Kidney Stones,

[GFBetty]

Hi All,

I'm new to the board and to this tough diet lifestyle change.

I have been gluten-free/WF since the end of Oct.2003.blood test confirmed no biopsy,DR. said lets see how you feel on the WF/gluten-free diet first...now I know she was wrong to have said that...RIGHT?

I feel a little better,but not in the grand scheme of things

I still have the big D every day,I am tiered and ache like I'm falling apart.My teeth are in need of several root canals,in general I feel like crap most of the time

I have told my Dr. but she does not seem all that concerned...it should not surprise me since she is the same person who made me feel like a hypocondriac

after I have complained to her for 21/2 years about the most embarrasing things only to find out it was my diet...needless to say I am angry,and have resentment towards her, lets see how you feel approach to my treatment.

I was told today my blood work was fine,but ct scan for kidney pain showed calcification in both kidney's and a fibroid cyst in my uterus,is this common in women with celiac disease and is there anything I can do to prevent stones,Any info would be

great.I do have an Appt to see a gastroenterologist in a few weeks at a different hospital.Is there anyone in the Boston area who can recommend a GREAT DR> familiar with celiac disease and its hidden problems.

Thanks

Betty

[tgcatmr]

Well, dear. I don't know if kidney stones is a common problem in celiacs because I'm only newly dx. I can only tell you that I, too, have kidney stones and also had a hysterectomy last year because of fibroids. I have bad teeth and used to have diarhea all the time. Since going gluten free (only 3 weeks), I have had NO diarhea but still have the fatigue. I hope I will gain some energy (and weight) as I heal! I hope a new doctor can give you some better answers and maybe those who have been doing this longer know more than me! Good luck!

[gf4life]

Kidney disease/stones can be common in Celiacs. Once you are completely gluten-free you shouldn't really form too many more stones, but I'm not sure if the calcification that is there will break up or not. My mother suffered terribly from kidney stones, and there are a few things that were recommended to her. The first being do not drink alcohol. This will over stimulate the kidneys and cause a stone to become dislodged and the pain of passing a kidney stone is insane. Also it was recommended that she drink filtered water, since the minerals in the tap water could cause formation of new stones. Other than that, I would say, just stick to the gluten free diet, and hopefully your body will get rid of the stones.

God bless,

Mariann

[Lily]

It was my kidney stones and their removal that finally led to my dx for Celiac. My back pain just simply never went away. I've read kidney stones can be common due to poor calcium absorption. Going wheat free my diarrhea went away, unless I had an accidental ingestion of gluten. My nutritionist says the same as Mariann, drink distilled water. Good luck Betty. I know what you mean about it being your diet as the controller when you've suffered for so long. I've been through the same thing. The right diet and some supplements and I think you'll feel better.

Blessings,

Lily

[Susan123]

I had Kidney stones last year on my 30th birthday. Happy birthday to me. Spent it in the hospital. Once you have them you will always have them. He said usually it is once every 10-11 years (now this is an average) Also, just because you have calcium buildup in your kidneys doesn't mean that they are going to dislodge and cause pain. I still have buildup in my kidneys from a year ago. Some people are just prone to them. The number one contributing factor to kidney stones is people who take Calcium Supplements. According to the emergency room doctor specialist. You should never take Calcium Supplements. If you are insufficient or unable to absorb find other means such as dietary intake or aids to help in the absorption. Also, as always drink plenty of fluids a day to filter the kidneys properly.

[gf4life]

The number one contributing factor to kidney stones is people who take Calcium Supplements. According to the emergency room doctor specialist. You should never take Calcium Supplements. If you are insufficient or unable to absorb find other means such as dietary intake or aids to help in the absorption.

This is good to know. Now I have never liked taking pills unless I absolutely need them. Being intolerant to dairy as well as gluten I have been worried about my calcium level in my bones. I am wanting to get a bone density test, since my mom suffered terribly from kidney stones, and quite often (about 2-3 times a year, sometimes more) and now my older sister has been having a lot of kidney problems (stones and infections). I don't want to end up with kidney stones from the calcium supplements! Therefore I don't take them. I wonder if the liquid calcium will build up stones as well?

Anyone know the answer to this? And what other foods are there that are high in calcium that we can eat besides dairy?

Mariann

[Lily]

I wonder if all doctor's agree about calcium supplements and kidney stones? I hesitate to trust them because it took them 35 years and 20 different doctors to finally figure out I'm a celiac. Thanks for the info though, I'll check into it.

Lily

[NOT-IN-2gluten]

Hi All,

I'm new to the board and to this tough diet lifestyle change.

I have been gluten-free/WF since the end of Oct.2003.blood test confirmed no biopsy,DR. said lets see how you feel on the WF/gluten-free diet first...now I know she was wrong to have said that...RIGHT?

I feel a little better,but not in the grand scheme of things

I still have the big D every day,I am tiered and ache like I'm falling apart.My teeth are in need of several root canals,in general I feel like crap most of the time

I have told my Dr. but she does not seem all that concerned...it should not surprise me since she is the same person who made me feel like a hypocondriac

after I have complained to her for 21/2 years about the most embarrasing things only to find out it was my diet...needless to say I am angry,and have resentment towards her, lets see how you feel approach to my treatment.

I was told today my blood work was fine,but ct scan for kidney pain showed calcification in both kidney's and a fibroid cyst in my uterus,is this common in women with celiac disease and is there anything I can do to prevent stones,Any info would be

great.I do have an Appt to see a gastroenterologist in a few weeks at a different hospital.Is there anyone in the Boston area who can recommend a GREAT DR> familiar with celiac disease and its hidden problems.

Thanks

Betty

[NOT-IN-2gluten]

Hi All,

I'm new to the board and to this tough diet lifestyle change.

I have been gluten-free/WF since the end of Oct.2003.blood test confirmed no biopsy,DR. said lets see how you feel on the WF/gluten-free diet first...now I know she was wrong to have said that...RIGHT?

I feel a little better,but not in the grand scheme of things

I still have the big D every day,I am tiered and ache like I'm falling apart.My teeth are in need of several root canals,in general I feel like crap most of the time

I have told my Dr. but she does not seem all that concerned...it should not surprise me since she is the same person who made me feel like a hypocondriac

after I have complained to her for 21/2 years about the most embarrasing things only to find out it was my diet...needless to say I am angry,and have resentment towards her, lets see how you feel approach to my treatment.

I was told today my blood work was fine,but ct scan for kidney pain showed calcification in both kidney's and a fibroid cyst in my uterus,is this common in women with celiac disease and is there anything I can do to prevent stones,Any info would be

great.I do have an Appt to see a gastroenterologist in a few weeks at a different hospital.Is there anyone in the Boston area who can recommend a GREAT DR> familiar with celiac disease and its hidden problems.

Thanks

Betty

[Gemini]

I had Kidney stones last year on my 30th birthday. Happy birthday to me. Spent it in the hospital. Once you have them you will always have them. He said usually it is once every 10-11 years (now this is an average) Also, just because you have calcium buildup in your kidneys doesn't mean that they are going to dislodge and cause pain. I still have buildup in my kidneys from a year ago. Some people are just prone to them. The number one contributing factor to kidney stones is people who take Calcium Supplements. According to the emergency room doctor specialist. You should never take Calcium Supplements. If you are insufficient or unable to absorb find other means such as dietary intake or aids to help in the absorption. Also, as always drink plenty of fluids a day to filter the kidneys properly.

This is not the best advice to give people....at all! There are many reasons why some are prone to kidney stones but to tell people never to take calcium supplements, especially post-menopausal women with low bone mass, is irresponsible. There are tests that can be done to figure out if you absorb well so there is an option if in doubt. I take a good dose of calcium, along with a calcium loaded diet because I was absorbing NOTHING by the time of diagnosis. At 50 years old, I can either supplement and help with the repair process or have osteoporosis when I am older. Never had a kidney stone in my life so it's not something I worry about. Protocol is probably different for the stone developers but not for the general population with no kidney issues.

You are correct with the water....so many people load up on soda and never drink water. That's VERY important.

[ravenwoodglass]

This is not the best advice to give people....at all! There are many reasons why some are prone to kidney stones but to tell people never to take calcium supplements, especially post-menopausal women with low bone mass, is irresponsible. There are tests that can be done to figure out if you absorb well so there is an option if in doubt. I take a good dose of calcium, along with a calcium loaded diet because I was absorbing NOTHING by the time of diagnosis. At 50 years old, I can either supplement and help with the repair process or have osteoporosis when I am older. Never had a kidney stone in my life so it's not something I worry about. Protocol is probably different for the stone developers but not for the general population with no kidney issues.

You are correct with the water....so many people load up on soda and never drink water. That's VERY important.

I agree with this completely, plus not all kidney stones are calcium related. If you have kidney stones it is best to consult with your doctor and also if you do pass one catch it so it can be analysed to determine what the stone is formed of. The doctor can then tell you what needs to be done or deleted to prevent them and in addition there are noninvasive procedures that can be done to break up larger ones allowing them to pass.

[Generic]

I had an 8 mm kidney stone, finally got rid of it back in April. They blasted it 3 times and finally had to go in and cut it out. I had a tube in my kidney (thru my back) for 3 days. I have been gluten-free for 21 years and this was the first stone for me. I now take potassium citrate (per the DR.) to help prevent stones. He never said to avoid calcium supplements. But, like what was said, there are different types of stones.

[ranger]

I don't have kidney stones, but found out at my celiac testing that my gallbladder was loaded with stones. That really suprized me because I never had any stones in my life. They are asymptomatic, so I just lug them around. I hope they don't cause the problems like kidney stones. It's interesting to note that I've developed calcifications in my lungs, breast ( had to have a biosy for that), and pancreas. I don't know what that indicates, but I haven't drank milk for years and, untill recently, never took calcium pills. Is it just getting old? Am I going to turn into a pillar of calcium? Yikes!

[Carri Ninja]

Interesting topic I have had kidney stones about 4 times a year for about 8 years now. I also have a build up of calcium in my joints. I rarely eat/ drink dairy because of the digestive consequences - plus it gives me really bad acne. I don't take calcium supplements or anything like that. I don't digest it properly. I figure {myself not dr talking} that if I am not digesting my food to begin with because of the celiac that it must be related. I also had high cholesterol b4 the diet - almost 300 - and now it is at 194 after diet.

[Wolicki]

Interesting topic I have had kidney stones about 4 times a year for about 8 years now. I also have a build up of calcium in my joints. I rarely eat/ drink dairy because of the digestive consequences - plus it gives me really bad acne. I don't take calcium supplements or anything like that. I don't digest it properly. I figure {myself not dr talking} that if I am not digesting my food to begin with because of the celiac that it must be related. I also had high cholesterol b4 the diet - almost 300 - and now it is at 194 after diet.

Four times a year for 8 years? OMG, I would have probably ended it by now Seriously though, I've had stones about 7 times. Haven't had any in the last 3 years or so. My problem, I think, was Squirt (you know, the soda?) It has grapefruit something or other in it, and I drank way too much of it. I haven't had a single stone since stopping that habit. Thakn God, because the pain is worse than anything I have ever experienced- even through 10 years of undiagnosed Celiac. Some say spinach and the oxilates will cause stones, too.

Anyway, I wouldnt' wish stones on anyone! Be well, and I will pray that you don't get anymore!

Janie