Complication With Dehydration Or Sjogren's?

[Woolygimp]

I've got Celiac disease and while my symptoms definitely improve gluten-free, they come back with a vengeance if I make a mistake. The three symptoms that plague me and will absolutely not go away are my dry mouth, dry eyes, and dry skin on my face. The dry skin on my face is the worst, it isn't just that my skin is dry... it's that the skin or muscle behind my skin feels like it's lacking water and becomes very tight and taught making it hard for me to smile or make expressions.

Initially, you look at those three symptoms and suspect Sjogren's which has a close tie to celiac disease, and while it's very possible that it's Sjogren's causing these symptoms I'm not entirely convinced.

I think it's very possible that it's some sort chronic persistant dehydration for several reasons. A while back I had surgery, and for days following the surgery all of my symptoms disappeared. My face became oily again, my mouth was moist, and my eyes would tear up. All the symptoms returned the second I got diarrhea, almost like my body was dumping the water. I'm not sure why I had the remission of symptoms following this surgery but I'm assuming it was the saline I.V. I was hooked up to.

So I've been to the doctor lately and we've been sort of side tracked trying to tackle what looks like a problem with my pituitary. He's placed me on hydrocortisone and testosterone while we await blood tests, I started taking fludrocortisone on the side.

If I take fludrocortisone and drink a lot of electrolyte liquids such as gatorade, I feel more "hydrated" a little more clear, I start getting saliva in my mouth, and eyes tear up, and dry skin disappears to some extent. No matter how much I drink, it never returns to "normal". Straight water does not help me at all as I just urinate it out immediately.

I can drink an insane amount of fluids, and no matter what these symptoms completely disappear. So if it's related to dehydration, something severe is happening keeping these "most" of these fluids out of my system. It could be Sjogren's, again, but does Sjogren's improve at all depending on fluid intake? If I don't drink anything for a while, or for instance when I awake, the symptoms are the worst. My skin and mouth can be very, very dry.

But like I said, when I drink I'd say there's a good 40-50% improvement in my symptoms. It's not that the liquids are hydrating my dry mouth, it's that I can drink the liquids and start producing saliva afterwards. It's just not as much as I'd like - and it's never to the point of pre-celiac or when I had that surgery. Is it possible for me to go to urgent care, say that I think I'm dehydrated and get an I.V.?

I need to know whether it's a problem with hydration (diabetes insipidus, hypoaldosteronism) or whether it's Sjogren's. I can fix the hydration problem and I'm 22 and it's ruining my life.

I have gotten tested for Sjogren's and tested negative, twice. (Sjogren's ANA test is unreliable and produces false positives and negatives often).

That's really what I want to do. I want to walk into urgent care and get that IV and see if things improves. If they do or don't, at least I'll know where I stand. Btw, following gluten-free diet I haven't had "D" in months, although it was quite common at the beginning so I'm not losing liquids in that manner.

[Mother of Jibril]

If you have Sjogren's (and I agree that it's possible even with negative tests) then your body has been attacking the moisture-producing glands in your body. It's not enough just to drink more water, because fluids like tears and saliva are a lot more complicated than that. Although... as you've noticed, becoming dehydrated can make things worse. Here's an excellent guide to symptoms and treatment:

Open Original Shared Link

Some things you might want to try...

Skin: using moisturizer consistently. Vaseline is good if you're really desperate... when my daughter had eczema as a baby Vaseline was the only thing that would keep her skin moist and take away the itching. Straight up petroleum jelly, not the lotion.

Eyes: eye drops! (they feel soooo good) I've been using Optive, which you can buy over the counter. If that isn't enough, do yourself a favor and go see an opthamologist... he/she can test the level of dryness and give you prescription eye drops. For a while I was using Restasis, which reduces inflammation in your eyes. Too much inflammation = not enough tear production.

Mouth: Biotene makes a "dry mouth" toothpaste (that was enough for me) and a gel that you can swish around in your mouth whenever it feels too dry... I just saw some at Target today

Good luck! Even if you do have Sjogren's, there's a lot you can do on your own to feel better.

[Woolygimp]

  Mother of Jibril said:

If you have Sjogren's (and I agree that it's possible even with negative tests) then your body has been attacking the moisture-producing glands in your body. It's not enough just to drink more water, because fluids like tears and saliva are a lot more complicated than that. Although... as you've noticed, becoming dehydrated can make things worse. Here's an excellent guide to symptoms and treatment:

Open Original Shared Link

Some things you might want to try...

Skin: using moisturizer consistently. Vaseline is good if you're really desperate... when my daughter had eczema as a baby Vaseline was the only thing that would keep her skin moist and take away the itching. Straight up petroleum jelly, not the lotion.

Eyes: eye drops! (they feel soooo good) I've been using Optive, which you can buy over the counter. If that isn't enough, do yourself a favor and go see an opthamologist... he/she can test the level of dryness and give you prescription eye drops. For a while I was using Restasis, which reduces inflammation in your eyes. Too much inflammation = not enough tear production.

Mouth: Biotene makes a "dry mouth" toothpaste (that was enough for me) and a gel that you can swish around in your mouth whenever it feels too dry... I just saw some at Target today

Good luck! Even if you do have Sjogren's, there's a lot you can do on your own to feel better.

Well the eyes and mouth really aren't that dry as long as I drink a lot, but by far the most bothersome is the dry skin on my face. My skin itself not only feels dry but it's lost a lot of it's elasticity, making it hard to make expressions, smile, or anything. Again, this improves if I drink a lot... and occasionally, if it's gone away entirely if I drink enough gatorade, like an unhealthy amount. Moisturizers don't help because it feels like it's dry on the inside, so while the outside may be moist it still feels extremely tight.

This is why I'm doubting that it's Sjogren's. The symptoms improve the more I drink, it just can't ever be water. I have to drink bottle after bottle of gatorade or some electrolyte solution, and even then that didn't work until I started taking the Florinef.

[Mother of Jibril]

Ah... I see. Did you know that one of the symptoms of Addison's disease is an electrolyte imbalance? High potassium and low sodium (which is why people with Addison's tend to crave salt). Gatorade has electrolytes... and florinef increases the level of cortisol in your body (compensating for your adrenal glands)... so that could explain a lot! Interesting that you notice the dryness most in your face. Have you seen an endocrinologist?

[Woolygimp]

  Mother of Jibril said:

Ah... I see. Did you know that one of the symptoms of Addison's disease is an electrolyte imbalance? High potassium and low sodium (which is why people with Addison's tend to crave salt). Gatorade has electrolytes... and florinef increases the level of cortisol in your body (compensating for your adrenal glands)... so that could explain a lot! Interesting that you notice the dryness most in your face. Have you seen an endocrinologist?

Well indications are not pointing towards addison's, although it hasn't been ruled out, but more of a pituitary problem. I'm still waiting results from a ITT test testing my GH levels. but probably something more along the line of a pituitary problem. If that's the case, adrenal insufficiency caused by low ACTH doesn't normally cause low aldosterone levels.

And yes, I've tried seeing an endocrinologist. It's horrible because the Drs around here have ridiculous waiting periods making this a year-long affair.

Go in to see a Dr., he'll prescribe labs taken 3 weeks later, wait another month for him to order some more labs, wait another three weeks, go in to get more labs, etc.

The Dr. that I'm currently seeing who has me on the testosterone and hydrocortisone is a rheumatoid specialist and he's tested me several times for Sjogren's.

And yeah, I guess it is weird that all of the dryness seems concentrated around my face. I don't notice much dry skin much of anywhere else, my hands/feet feel fine. Maybe it's a circulatory/vascular problem, I really don't know...

All this started about 5 years ago when my celiac disease became symptomatic.

[ohsotired]

Woolygimp - I just wanted to chime and tell you taht you are not alone. You've pretty much described me with the dry eyes, dry mouth, and dry skin - except for me, I'm dry from head to toe, and my sinuses are extremely dry as well. I'm 34 years old and have more days than not where I look and feel like a shriveled up dried out raisin.

I haven't had any IV drips since this all started though, so I don't know if that would improve my symptoms. I do notice that water does NOTHING for me, and drinks like Gatorade or even OJ mixed with water seem to help a little bit.

I'm just beginning the journey to figure out what it's from, and I've suspected Sjogren's, but my GI doc mentioned Bechet's. I did some reading and it didn't seem as though my symptoms fit Bechet's.

I've also thought perhaps I might have a thyroid issue, and now I wonder about Addison's.......

Anyway, I just wanted to let you know that someone else was going through what you are. I'd love it if you would keep me updated on your progress on this.

[GFinDC]

I don't know if this will help any, but this MedNet page lists some conditions associated with electrolyte imbalances.

Open Original Shared Link

Since the Gatorade seems to help, it seems like i tmight be something throwing the electrolyte balance off in the body? Here is their list.

* Low Blood Pressure

* Congestive Heart Failure

* Kidney Failure

* Dehydration

* Diabetes

* Muscle Cramps

* Stroke

* Dizziness

* Kidney Infection

* Clostridium Difficile Colitis (Antibiotic-Associated Colitis, C. difficile colitis)

* Fainting (Syncope)

* Hyperkalemia

* Pulmonary Embolism (Blood Clot in the Lung)

* Low Potassium (Hypokalemia)

* Abnormal Heart Rhythms (Heart Rhythm Disorders)

* Colitis

* Heat Stroke

* Burns (First Aid)

* Coma

* Hemolytic Uremic Syndrome

* Drowning

[Woolygimp]

  GFinDC said:

I don't know if this will help any, but this MedNet page lists some conditions associated with electrolyte imbalances.

Open Original Shared Link

Since the Gatorade seems to help, it seems like i tmight be something throwing the electrolyte balance off in the body? Here is their list.

* Low Blood Pressure

* Congestive Heart Failure

* Kidney Failure

* Dehydration

* Diabetes

* Muscle Cramps

* Stroke

* Dizziness

* Kidney Infection

* Clostridium Difficile Colitis (Antibiotic-Associated Colitis, C. difficile colitis)

* Fainting (Syncope)

* Hyperkalemia

* Pulmonary Embolism (Blood Clot in the Lung)

* Low Potassium (Hypokalemia)

* Abnormal Heart Rhythms (Heart Rhythm Disorders)

* Colitis

* Heat Stroke

* Burns (First Aid)

* Coma

* Hemolytic Uremic Syndrome

* Drowning

I think a major clue is my positive reaction to the fludrocortisone/florinef. It's a mineralcorticoid that helps your body retain and regulate salt.

When I first started taking the Florinef, I definitely felt the most hydrated and felt really good for the most part. I ran out of that, ordered some from an overseas pharmacy and since then I feel better than without it but it just doesn't seem as effective as the first batch of Florinef I took (was prescribed several months prior and filled at Walgreens).

It's hard to tell if the first batch of Florinef put me back completely back to normal because I ran out so quick, but I'd say it was pretty close... I still had to constantly drink things with salt/sugar in it, as water did me absolutely no good.

I don't see why Sjogren's would ever respond to these things but I don't know that much about it. Maybe I'm actually "over" hydrating myself and that eases Sjogren's symptoms?

doubtful, but it's a possibility i guess.

[GFinDC]

Hi Woolygimp,

You could probably put what I know about Sjogren's in a thimble, and have room to spare. What's that old saying "fools rush in"?

Well, first off it seems to me you have a fairly good idea there, seeing how you felt better after the surgery (as related to the dryness). Going off for an IV might not get you the answer though. From watching Dr. House on the boob tube, they are always running in the patient's room and injecting some kind of something in their IV line. I think it is probably money extraction goop, but who knows for sure? Anyway, maybe you could talk to your doc about that experience, and see if it makes sense to review all the meds and whatnot they gave you during your hospital visit. If you could get a list of drugs administered you could research them yourself. Or even better maybe your doc could do some research and explain what might have happened to help you. Perhaps the doc would be willing to try the IV idea too. Hmm, probably I am living in a fantasy world where doc's actually try to help people though. I've been watching too much House I guess..

[Woolygimp]

  GFinDC said:

Hi Woolygimp,

You could probably put what I know about Sjogren's in a thimble, and have room to spare. What's that old saying "fools rush in"?

Well, first off it seems to me you have a fairly good idea there, seeing how you felt better after the surgery (as related to the dryness). Going off for an IV might not get you the answer though. From watching Dr. House on the boob tube, they are always running in the patient's room and injecting some kind of something in their IV line. I think it is probably money extraction goop, but who knows for sure? Anyway, maybe you could talk to your doc about that experience, and see if it makes sense to review all the meds and whatnot they gave you during your hospital visit. If you could get a list of drugs administered you could research them yourself. Or even better maybe your doc could do some research and explain what might have happened to help you. Perhaps the doc would be willing to try the IV idea too. Hmm, probably I am living in a fantasy world where doc's actually try to help people though. I've been watching too much House I guess..

Well when I made this thread I had taken a period of time and weaned off the fludrocortisone to see what difference it made. The dryness came back severely and it's what prompted the thread.

After resuming the fludrocortisone the day before yesterday, and eating a healthy amount of salt (unhealthy, rather) I feel much, much better.

Feel very hydrated and my skin, mouth, and eyes have improved drastically and I have not noticed much dryness at all lately.

I really think it's the key. Between hypoaldosteronism or some sort of chronic salt wasting, it's something related, because I'm noticing a very positive effective on this medication.

Going to have to get my physician to look deeper. I've ruled out diabetes insipidus.

[RiceGuy]

I was also always thirsty. Constantly. Although copious amounts of salt helped a little, it was clear that low sodium intake wasn't the reason I was so thirsty. Then I started taking potassium, and I got immediate improvement. I also notice a positive difference with the vitamins and other minerals I take. I'm no longer chronically thirsty. I am still taking the potassium.

Gatorade also has potassium, so it wouldn't surprise me if you're deficient in this mineral, and possibly other nutrients. I'd highly recommend a strong multivitamin and mineral supplement. It cannot hurt, and who knows, it may just do the trick. One thing I'm sure of though, is that nobody ever has a deficiency of pharmaceuticals.

Thing is, Open Original Shared Link causes an increase in potassium excretion, amongst other side effects. This could lead to a potassium deficiency, if you don't already have one. And from that description, it has the potential to do a lot of harm over time.

[Woolygimp]

Wow. From Wikipedia:

  Quote

Cerebral salt-wasting syndrome

From Wikipedia, the free encyclopedia

Jump to: navigation, search

Cerebral salt-wasting syndrome

Classification and external resources

DiseasesDB 32234

eMedicine ped/354

Cerebral salt-wasting syndrome (CSWS) is a disease featuring hyponatremia (low blood sodium levels) and dehydration in response to disease processes in or surrounding the brain. This form of hyponatraemia is due to excessive renal sodium excretion resulting from a centrally mediated process and is termed cerebral salt wasting (CSW). It was first described in 1950.[1]

[edit] Differential diagnosis

It may be difficult to distinguish from the syndrome of inappropriate antidiuretic hormone (SIADH), which develops under similar circumstances and also presents with hyponatremia. Patients with cerebral salt-wasting syndrome usually present with cerebral lesion/Hematoma/Tumor. They usually are dehydrated and hypovolemic. The differential would be SIADH, in which patients are usually normal to hypervolemic. The main clinical difference between these two conditions is that of total fluid status of the patient: CSWS leads to a relative or overt hypovolemia, whereas SIADH is consistent with a normal to hypervolemic patient. [2]

Another useful point in differentiating CSWS from SIADH is a laboratory finding: random urine sodium concentrations tend to be >100 mEq/L in CSWS. SIADH rarely, if ever, leads to a random urine sodium of >100 mEq/L.

[edit] Treatment

The reason for the abnormality is different, and treatments are opposites: fluid restriction is used in SIADH, which would worsen cerebral salt wasting. Instead, CSWS is treated with fluids and correction of the low sodium.

Sometimes, fludrocortisone (a mineralocorticoid) improves the hyponatremia.[3] The other way of differenting with the salt wasting syndrome is to keep the patient on water restriction and see the change in sodium.If there is a increase in sodium than it is more likely that it is SIADH than salt wasting syndrome.

2. Volume replacement:

- maintain adequate hydration usually with intravenous isotonic saline solutions (0.9% NaCl)

Treatment consisting of fludrocortisone and IV with saline solutions, both of which have helped me. Symptoms include chronic and persistant dehydration.

This definitely sounds like a match. I need to get this looked into ASAP.

[Crystalkd]

Not sure what's casing your symtoms but you do understand that what your doctor is treating you for is Addison's Disease right? They've started treating me for that as well. I just spent 9 days in the hospital because of a crisis. I felt better with the IV as well. How is your blood pressure and sodium? If they suspect your pituatary glad once that's figured out and meds are adjusted you could start feeling better. They are looking at mine too as well as a possible platelet problem. I gurs right now drink as much water as possible and if your craving salt get more in your system.

[Woolygimp]

  Crystalkd said:

Not sure what's casing your symtoms but you do understand that what your doctor is treating you for is Addison's Disease right? They've started treating me for that as well. I just spent 9 days in the hospital because of a crisis. I felt better with the IV as well. How is your blood pressure and sodium? If they suspect your pituatary glad once that's figured out and meds are adjusted you could start feeling better. They are looking at mine too as well as a possible platelet problem. I gurs right now drink as much water as possible and if your craving salt get more in your system.

If I have adrenal problems, it's more likely due to a faulty pituitary (insufficient ACTH stimulating the adrenals) and that normally doesn't cause low aldosterone levels.

[sjogrens+2]

Wow. Your symptoms are just like ones (stiff face muscles, need for fluids)that I have and I do have positive Sjogrens diagnosis from Johns Hopkins who is doing a basic Sjogrens genetic study. Lip biopsy positive, Sjogrens A and B blood results, eye shimer test and the saliva test. On the surface, you might not know because upon examination I might have a good flow of saliva or tears that day...however, nights are the worst and seasonal changes are big for me. I too get into periods where only gatorade relieves my symptoms. At one point during the onset of the disease the dryness affected my pancreas as I was nauseas for a month (lost 30 pounds). Everytime I would go to the ER get fluids, I had an appetite for the again and the next day it would be gone. I believe like any invador (which our bodies obviously are attacking), your body is trying to flush it out and you lose fluids. Your immune system is overactive. I have tested positive for celiac, have had a thyroid issue for 20 years (hashimotos), manageable high blood pressure, swollen lymph nodes, and issues with burping/hot throat/gerd, moderate brain fog,and mild to seveve anxiety depending on my medical symptoms.

Things that have helped me. Gatorade and coconut water; clonazepam/klonipin;nexium/synthroid, keeping my thyroid as regulated as possible;staying gluten free; eliminating other foods during flare-ups-milk/soy; sounds silly but I mist my face with water quite regularly as my body temperature tends to go up easy and I don't sweat.

They are just knocking the surface of this disease and the doctors have no concensus about anything. I believe Sjogrens is worse than Lupus as it seems to have the "potential" of affecting the organs lupus does plus some. It also is less understood and studied. Keep calm is my best advice, do not take any pills/vitimins unless you have to (my research and experience on sjogrens is that we are very medication sensitive and that goes triple for me). In addition, a nervous body is a dangerous atmosphere for disease progression so ride out the flares up as calmly as possible.

Stay Stong

[bswillis]

WOW. Amazing. I see so many folks on here who sound like me. I've been hypothyroid for 18 years (half my life). Had hysterectomy 3 years ago. Gallbladder removed 2 years ago. I hemorraghed after going home. I haven't felt normal since. So many Dr's and tests. My rheumy this summer finally said my sodium levels were dangerously low and started testing me for Sjogren's. My blood test was negative but my lip biopsy showed chronic inflammation in all samples. I have had several episodes of MRSA abcesses - 2 in the last month. My OBGYN said last week that she suspects I have IC and started me on vistaril for it. I have had a severe allergic reaction to something in the last several days. Today, my regular Dr suggested Celiac's. It's the only thing that makes sense. I am blown out of the water though! I am a Southern girl at heart, I love good food and sweet iced tea. I am desperate to feel better, just such a challenge to change your way of life. Food for me has been what the world revolves around.

[Skylark]

This is a 2-year old thread. I doubt the author is checking it for help any longer. Bswillis, welcome and may I suggest you start a new thread?