Diabetes Insipidus or Sjogren's Syndrome

[Woolygimp]

I'm a 22y/o male with diagnosed Celiac disease and I'm either suffering from a condition that causes chronic dehydration or Sjogren's, and I'm at a bit of a cross roads here and I'm genuinely worried.   Celiacs are at risk for both central Diabetes Insipidus and Sjogren's.  I've been experiencing dry mouth, dry eyes, and dry skin (mostly on my face) for a couple years now and initially thought I had Sjogren's.  I am also always thirsty and urinate frequently, so I thought there was a chance that I was dehydrated.  I have some hypopituitary dysfunction, low testosterone/cortisol/GH so a condition like diabetes insipidus is a possibility.  I'd much rather my discomfort be caused by dehydration than Sjogren's, because the former can be corrected with proper medical treatment.  I had an ANA antibody test done and I tested negative for Sjogrens, but I know the test is very unreliable so I don't know how much stock to put in the results.

After a surgery I had last year, where an IV was placed in my vein with a saline solution I felt great for the next several days.  I could salivate, eyes teared, and my face became somewhat oily again but this lasted only for around four days and could be explained by the glucorticoids given supressing my immune system as well and putting the AI Sjogren's in temporary remission.

Recently, I've begun taking fludrocortisone with salt causing improved water retention, this has helped a ton and my dryness went down significantly after taking this medication.  Being properly hydrated greatly improves my symptoms, although straight water initially did nothing for me.  I can drink all the water in the world and I'm in the bathroom constantly peeing it out.  In general though, my dry mouth/eyes/skin become far worse if I go for several hours without drinking fluids.  Gatorade & salt water helps the most.  Although one counter-indication of dehydration is that only the skin on my face is dry.  I do the pinch test for dehydration and it is normal.

I know Sjogren's sufferers are recommended to a lot of fluids, but isn't this to keep the mouth properly moistened?  After I drink liquids, my saliva production markedly increases, my skin softens, and I can squint tears out of my eyes.  I really don't know if this is normal for someone with Sjogren's, so this leads me to believe it's a problem like Diabetes Insipidus and my body retaining water content.  Can anyone here comment on this specifically? 

I don't have much muscle or joint pain, only some weakness and fatigue to hypopituiary adrenal insufficiency.  Cortisol replacement doses help.

This post is basically for peace of mind until I can get the relevant tests done, so I'm just curious if being properly hydrated alleviates Sjogren's symptoms in many of you?  Does chronic dehydration mimic the symptoms of Sjogren's?

[Scottietottie]

Hi Woolygimp 

Welcome to Sjogren's world! Love the name! 

None of us are doctors in here, so to get a dx you really have to see a doc. I've googled for Diabetes Insipidus, as I'm sure you have, and your symtoms certainly fit, particularly taking into account you've already ahd pituitary problems.

You really need to see a doctor and get them to do the relevant tests. 3 of my children had vasopressin deficiency when they were kids and a hormone spray in their noses every night sorted them out a treat! It was something they all grew out of so I realise it's different.

Please see your doc and come back and tell us how you got on.

Take care - Scottie 

[Woolygimp]

Hi Woolygimp 

Welcome to Sjogren's world! Love the name! 

None of us are doctors in here, so to get a dx you really have to see a doc. I've googled for Diabetes Insipidus, as I'm sure you have, and your symtoms certainly fit, particularly taking into account you've already ahd pituitary problems.

You really need to see a doctor and get them to do the relevant tests. 3 of my children had vasopressin deficiency when they were kids and a hormone spray in their noses every night sorted them out a treat! It was something they all grew out of so I realise it's different.

Please see your doc and come back and tell us how you got on.

Take care - Scottie 

thanks for the reply!

i'm definitely going to get things checked out, but it can be several weeks to get into an appointment and several more after that to get the results.

do you mind if i ask, did your kids exhibit any classical sjogren's symptoms while they were dehydrated?

[Linda196]

Hello and welcome, Woolygimp.

As Scottie said, we can't diagnose you, but the diagnostic tests for DI are fairly straight forward and accurate, so I really think you need to have them done to get your answer. Increasing salt intake in someone with SjS would usually contribute to more dryness, because SjS is a problem of local hydration and salt is hygroscopic, so it actually draws moisture from the tissues it touches. It improves systemic hydration for some problems, because it goes into the cells, and attracts fluid from the circulation into the cells.

Just one comment though, large volumes of fluid intake aren't really recommended for SjS, because it's not a systemic dehydration, it's failure of the moisture producing glands to adequately lubricate the areas that need lubrication. It's far better to sip small amounts of fluids and hold the fluid in the mouth for a short time, than to drink large volumes; and increasing the amount of fluid ingested doesn't do anything to increase the amount of tears produced.

[Scottietottie]

Hi woolygimp 

My kids didn't exhibit SjS symptoms but they didn't have pituitary problems either. What they did was drive me mad on shopping trips, needing to 'go' at least twice while in the supermarket and a teacher wanted one of them referred to the doc because he 'went' every 20 minutes on a school trip once. They all had to have passes to get out of class to 'go' cos they couldn't hang on till break times. As I say - they were different to you - because they seemed to develop enough of the hormone once in their late teens.

I hope you get the answers you're looking for.

Take care - Scottie