Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Anyone Here Have Diabetes Insipidis?
0

5 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,593
    • Total Posts
      918,292
  • Topics

  • Posts

    • Allergy or Preference? Waiter asks
      At my local Five Guys, I told the counter guy that I had to avoid gluten for medical reasons. I was ordering a burger with no bun and some fries. He yelled back "Allergy Alert!" and every line cook immediately changed gloves and cleaned their work space. Will I go back? You bet I will!
    • celiac disease is psychosomatic
      The office is located in another city than location I went to. There is no receptionist at the location closest to me meaning patients wait for the doctor to open her closed door to call their name for a consult. So, I would have to knock on her door which would really make her say that I'm sick since I keep writing letters AND showing up in person. The main office is too far for me to travel with construction going on for the remainder of the year. I suppose I could mail the letter instead. But the staff is very irresponsible so it might be thrown away. The doctor probably told them that nothing needed correction in my records so ignore further requests from me. The other staff member I dealt with seemed normal, but I complained to the doctor about the staff member I dealt with today when she failed to update my phone number that I gave to her a few times (and which she said she updated), which resulted in me showing up for an appointment one of the testers thought she canceled by leaving voicemail for phone number I no longer had. What I mean is I told the doctor that the staff member said she updated my phone number when the doctor asked me why I was there when I showed up for that cancelled appointment. Unfortunately, this staff member answers the phone most of the time. I'm sure she did what she could to make me look bad to the doctor to make her look good because I complained about her. I guess if staff members seem crazy, it's a good sign the doctor is also crazy.  I feel like scheduling an appointment with a psychologist and tell her what ahppened with this name calling. I'm sure it's against the therapist code or I'd like a psychologist's feedback on this doctor's behavior. There are other patient complaints about her on the Internet how she laughs at patient's pain and suffering. I feel that's how she treated me as well. Update: The staff member called me back to tell me the doctor amended my report and she put it in the mail. I wonder if the doctor discussed what she said to me with another doctor who told her what she did was unacceptable in the medical field. I ma hoping my report is amended or not new negative comments are added by the doctor to say I keep writing her letters or something in that regard.
    • celiac disease is psychosomatic
      The letter I am suggesting has nothing to do with the doctor.  I would type it and walk it to the desk when are in the building for your other appointment. 
    • celiac disease is psychosomatic
      Thanks. I'm not sure if the doctor will read another email I send and that's the way I'm told by staff to contact her. It will just confirm that I keep writing her letters although I only sent her one email about it! I already told the staff and her that I didn't want my medical records sent to any doctor's office, but I don't know if they will do it out of spite. It was scary talking to this doctor because she wouldn't listen or let me get a word in...I guess that's the reason why I feel the need to raise my voice at this office. When I requested a Lyme disease prescription from another doctor years ago before I knew I had celiac disease, this ignorant doctor told me not to come back to his office because there's no such thing as Lyme disease so only crazy people think they have it. I thought that was the worst experience I had with a doctor, but this experience was worse. I mean this neuropsychiatrist kept calling me a sick person over and over. It's so scary dealing with doctors like this. I really don't know how many other doctors may have wrote in my records that my symptoms are all in my head because celiac disease isn't real.   And my neurologist said this neuropsychiatrist was great. Maybe he says that about all the doctors he refers to patients to? I don't know if you call her personality psychopath since she appeared really nice during my consult, but she was thinking all this negative s*** in her mind at the time or different than she appeared to be.
    • Nature's Bounty Protein & Vitamin Shake Mix
      Sort of funny.  Says no wheat at the bottom but also says this " Other Ingredients: Proprietary Protein Blend (Soy Protein Isolate, Whey Protein Concentrate), Cocoa (processed with alkali), Inulin, Oat Fiber, Fructose, Natural Flavors, Maltodextrin, Soy Lecithin, Tricalcium Phosphate, Xanthan Gum. Contains milk and soy ingredients. Contains wheat ingredients.   I bet they do not use gluten free oats, so its a bit of a gamble.  Not one a Celiac should take as there is no such thing as "not severe Celiac".  Even if you don't feel the damage, consuming gluten will start damaging you.  Maybe its just catching up with you.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,690
    • Most Online
      1,763

    Newest Member
    jilord
    Joined