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celiac2010

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celiac2010 Newbie
celiac2010
Posted

Hello

I've had idiopathic nephrotic syndrome / kidney disease since I was 4. At 18 I was diagnosed with (extreme) dry eyes - cause unknown. Had tests for sjogren, autoimmune, allergy, but nothing pops up so it seems. The dry eyes are most frustrating. A lot of tiredness especially in the morning.

Since I was a kid I had a big belly. Also as far as I can remember constipation (no 2 about every 3 days at most, to get nasty in details, big large stools with float). Since not much to lose, I am now trying a gluten free diet for a week now. Third day watery poo which stopped 3 days later. As far as constipation goes it's not there atm, but it's much too early to tell any difference besides that operational change.

Just thought I would join here for now :)

Greetings

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leadmeastray88 Contributor
leadmeastray88
Posted
Hello

I've had idiopathic nephrotic syndrome / kidney disease since I was 4. At 18 I was diagnosed with (extreme) dry eyes - cause unknown. Had tests for sjogren, autoimmune, allergy, but nothing pops up so it seems. The dry eyes are most frustrating. A lot of tiredness especially in the morning.

Since I was a kid I had a big belly. Also as far as I can remember constipation (no 2 about every 3 days at most, to get nasty in details, big large stools with float). Since not much to lose, I am now trying a gluten free diet for a week now. Third day watery poo which stopped 3 days later. As far as constipation goes it's not there atm, but it's much too early to tell any difference besides that operational change.

Just thought I would join here for now :)

Greetings

Hi and welcome :)

Have you ever been tested for Celiac Disease? If you want to get tested, you have to be consuming gluten or else they won't be accurate.

If you just decide to go gluten free that's okay, as long as you don't want testing. As for the diet, it could take a couple of weeks before you notice any significant change, but everyone's different. Good to hear you're seeing somewhat of a change though!

BostonCeliac Apprentice
BostonCeliac
Posted
Hello

I've had idiopathic nephrotic syndrome / kidney disease since I was 4. At 18 I was diagnosed with (extreme) dry eyes - cause unknown. Had tests for sjogren, autoimmune, allergy, but nothing pops up so it seems. The dry eyes are most frustrating. A lot of tiredness especially in the morning.

Since I was a kid I had a big belly. Also as far as I can remember constipation (no 2 about every 3 days at most, to get nasty in details, big large stools with float). Since not much to lose, I am now trying a gluten free diet for a week now. Third day watery poo which stopped 3 days later. As far as constipation goes it's not there atm, but it's much too early to tell any difference besides that operational change.

Just thought I would join here for now :)

Greetings

Definitely give it time - but GOOD LUCK! Hopefully this will make a difference for you.... Watch for hidden gluten (soy sauce, modified food starch, etc) & cross-contamination to make sure your experiment goes well.

This is a great site for support and getting answers to questions.

Liveenjoylife Apprentice
Liveenjoylife
Posted

Welcome to the board!

MomOf2PrettyGirls Rookie
MomOf2PrettyGirls
Posted

Hey there. I'm new as well. My first post was just last night. I wanted to add that I have very similar symptoms to yours. Not Kidney Disease, but a multitude of kidney infections when I was a child. I now have extremely dry eyes. Years of constipation that alternated off and on with bouts of diarrhea. It was terrible. I've had a ton more symptoms though, so i'm trying Gluten Free diet and it seems to be helping. I hope you get some relief as well!

celiac2010 Newbie
celiac2010
Posted
  • Author
Hey there. I'm new as well. My first post was just last night. I wanted to add that I have very similar symptoms to yours. Not Kidney Disease, but a multitude of kidney infections when I was a child. I now have extremely dry eyes. Years of constipation that alternated off and on with bouts of diarrhea. It was terrible. I've had a ton more symptoms though, so i'm trying Gluten Free diet and it seems to be helping. I hope you get some relief as well!

Hi all

Thanks for the welcome :) I am not going to be tested; best test is doing the diet for a month or may be 2 i fugured. Besides I've seen docs enough for now - I am trying to solve the eye issue ffor quite some time but no luck yet. If it works - great - if it doesn't - at least I tried B)

MomOf2PrettyGirls: i had infections as well. They operated and removed part of the kidneys. Although to most people it might sound weird, I am more bothered with the eye thing; it's a really stand-in-the-way-thing. My constipation is always about the same and I really don't take notice at it much. Used to think once every 3 - 5 days was normal - still am not sure if its totally abnormal but well it was the hint to try this diet. Some nasty detail is my no2 sometimes actually cloggs (I am not sure of the right word?) the toilet :angry: How long have you been on the diet and what are the differences you notice?

Ciao

leadmeastray88 Contributor
leadmeastray88
Posted

Goodness, you've been through alot :(

Hopefully, the diet will work for you too!

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terribeth07 Apprentice
terribeth07
Posted

You mentioned the dry eyes. Does anyone know if that is related to celiacs or gluten intolerance. I have very dry eyes. I was on restasis for a few years because I was hardly producing any tears but I went off of it because it wasn't helping all that much & I couldn't afford it.

leadmeastray88 Contributor
leadmeastray88
Posted
You mentioned the dry eyes. Does anyone know if that is related to celiacs or gluten intolerance. I have very dry eyes. I was on restasis for a few years because I was hardly producing any tears but I went off of it because it wasn't helping all that much & I couldn't afford it.

Chronic dry eyes/mouth is a symptom of Sjogren's syndrome, have you ever been tested for that? It could be linked to Celiac because it is also an autoimmune disease:

Open Original Shared Link

This particular autoimmune illness features inflammation in certain glands of the body. Inflammation of the glands that produce tears (lacrimal glands) leads to decreased water production for tears and eye dryness. Inflammation of the glands that produce the saliva in the mouth (salivary glands, including the parotid glands) leads to dry mouth and dry lips.

Sjogren's syndrome with gland inflammation (resulting dry eyes and mouth, etc.) that is not associated with another connective tissue disease is referred to as primary Sjogren's syndrome. Sjogren's syndrome that is also associated with a connective tissue disease, such as rheumatoid arthritis, systemic lupus erythematosus, or scleroderma, is referred to as secondary Sjogren's syndrome.

celiac2010 Newbie
celiac2010
Posted
  • Author
You mentioned the dry eyes. Does anyone know if that is related to celiacs or gluten intolerance. I have very dry eyes. I was on restasis for a few years because I was hardly producing any tears but I went off of it because it wasn't helping all that much & I couldn't afford it.

sjogren is no1 to look for. some other autoimmune (and also some hormone factors) can give it to you (been tested for all that, all negative). on the internet i also found some posts of people with celiac who indicatedtheir dry eyes were gone (or at leastbetter) after gluten free. that's part of why i try.

update; some watery stuff instead of poo.... i must be needing the gluten (try to eat fibres as in beets and stuff but doesn't seem to help - may be wrong choice <_< )

celiac2010 Newbie
celiac2010
Posted
  • Author

double post

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