Anyone Here Have Diabetes Insipidis?

[gluten-is-kryptonite]

Hi everyone

 

I did a search and there were a few threads but they were a bit old. Does anyone here also have diabetes insipidis? I wondered if you could share some of what your symptoms were and also weigh in on the below. I am really having a hard time.

 

Once I went gluten free I no longer had stomach pain, digestion was better and more energy however something is still not right. Anytime I have a lot of salt I get major issues- basically like really dehydrated even though I am drinking a great deal of water. I haven't been tested yet for DI but plan to asap. I only have come into this hypothesis last night. I seem to have all of the symptoms for DI. I will list them-

Urinate VERY frequently including several times at night and is always clear. Even after sleeping or exercise it is clear with just a slight yellow hue. My last few blood tests had a high BUN and also a high BUN/creatinine ratio. It seems like water just goes through me and i am not hydrated even though I'm drinking a ton. I also am very thirsty all the time and wake up with a very dry mouth.

 

I am an endurance athlete too and this has been very difficult to deal with. If I drink sport drinks I get a sleepy fatigue dehydrated feeling. I seem to only be able to do water and low sodium carb sources. Am I on the right track with thinking I might have this? It has been going on for at least 2 years and I haven't been able to get it to stop.

 

Is there a connection between celiac and DI? Is it possible that the autoimmune nature of celiac has damaged my pituitary gland and caused DI?

[Chiana]

This is actually a more complicated issue than you might think at first glance.  I've had problems with drinking lots of fluids and urinating every 20 minutes for several years now.  I've had all the crazy work-ups.  I've been scoped and poked and prodded.  There are a dozen possible causes of the issues you've been having, and I started to compile a list with explanations, but realized that it would be several pages long.  Here is the short version:

 

 

1. You could have chronic UTIs that your body is failing to clear.  I've experienced this one personally.

2. You could have actual diabetes.

3. You could have reactive hypoglycemia.

4. You could have a structural abnormality in your kidneys, or cancer.

5. You could have an auto-immune related irritation in your urinary tract.  (If I eat gluten, I have to pee every five minutes, get terribly thirsty, and sometimes start passing blood and tissue in my urine for the next few days.)

6. You could have DI.

7. If you're a caffeine drinker, could be hypersensitive to caffeine.

 

 

Some other things to think about: It's the winter.  If you live in a climate where it is below freezing outside, you need to have a cool-air humidifier running in your home, either in-line with the furnace or as a unit in your living room/bed room.  If you don't, your body will force you to drink a metric ton of water to compensate.  To give you an idea, this winter before we brought out the humidifier, I would go to bed and wake up 3-4 lbs lighter, just from water lost to breathing.

 

 

Also, you're an athlete.  You are pushing your body to it's limits, and it's not unusual to hear from runners, etc. that they drink 3x the water that the average Joe does.

 

 

My guess is that it is a combination of things.  You need to see a doctor to really know.

[gluten-is-kryptonite]

This is actually a more complicated issue than you might think at first glance.  I've had problems with drinking lots of fluids and urinating every 20 minutes for several years now.  I've had all the crazy work-ups.  I've been scoped and poked and prodded.  There are a dozen possible causes of the issues you've been having, and I started to compile a list with explanations, but realized that it would be several pages long.  Here is the short version:

 

 

1. You could have chronic UTIs that your body is failing to clear.  I've experienced this one personally.

2. You could have actual diabetes.

3. You could have reactive hypoglycemia.

4. You could have a structural abnormality in your kidneys, or cancer.

5. You could have an auto-immune related irritation in your urinary tract.  (If I eat gluten, I have to pee every five minutes, get terribly thirsty, and sometimes start passing blood and tissue in my urine for the next few days.)

6. You could have DI.

7. If you're a caffeine drinker, could be hypersensitive to caffeine.

 

 

Some other things to think about: It's the winter.  If you live in a climate where it is below freezing outside, you need to have a cool-air humidifier running in your home, either in-line with the furnace or as a unit in your living room/bed room.  If you don't, your body will force you to drink a metric ton of water to compensate.  To give you an idea, this winter before we brought out the humidifier, I would go to bed and wake up 3-4 lbs lighter, just from water lost to breathing.

 

 

Also, you're an athlete.  You are pushing your body to it's limits, and it's not unusual to hear from runners, etc. that they drink 3x the water that the average Joe does.

 

 

My guess is that it is a combination of things.  You need to see a doctor to really know.

Thanks Chiana

 

I have had many blood tests as well. Negative for type 1 or 2 diabetes. Hypoglycemia i don't think so. My symptoms only happen if I take in a lot of salt (sleepiness, dizziness, fatigue- dehydration and hypernatremia symptoms). If I take in food with little or no salt there is no problem. When the symptoms set in I can go from feeling great to horrible in a matter of  minutes- and it also has a HUGE impact on my mood and focus. It's almost as if my brain is being affected as well. There is no question I am chronically dehydrated even when not training even though I am drinking an incredible amount of water. I actually got an appt with a nephrologist today so I am really hoping to get some answers. I am so frustrated and this is having a huge impact on my life. The last 7 days have been especially bad since I did a little experiment on my own and had a lot of sodium last tuesday. Haven't felt good since then.

[julissa]

I have Central Diabetes Insipidus and would be happy to help you with anything you'd like to know. You should go to an endocrinologist for a diagnosis. They will perform a water deprivation test to diagnose you, probably in the hospital. it's not bad at all, sounds worse. I take DDAVP to replenish the hormone that my body stopped making that is the hormone that allows you to make and hold urine. without it, you pee all day and night, drink all day and night and dehydrate easily as your body doesn't hold liquids. I was diagnosed 5 years ago, I am 59.

[UK2004]

Anyone else with info about this, I had urinalysis ten years ago and blood tests and was told sure it is not DI but offered water deprivation test to put my mind at rest. I walked out of this as the nurse messed up cannula but starting to worry again. Going to try and get the test booked for as soon as possible. It always seems that they say you must urinate 3 litres or more a day regardless of water intake although I read one website that said you can have DI with only 2.5 litres of urine a day. Mine seems to hover from 2 to 2.3 litres, my symptoms with thirst had calmed down going gluten free from January for my bladder problems but seem to of kicked off in last week. From what I have read though DI does not come and go in a normal person it's either there or not. I woke up this morning with very orange urine after long sleep but one hour later after no drink i did a more clear hay coloured urine which has panicked me that I have DI.