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New Here - Just Trying Gluten Free


celiac2010

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celiac2010 Newbie

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
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
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

Welcome to the board!

MomOf2PrettyGirls Rookie

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
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

Goodness, you've been through alot :(

Hopefully, the diet will work for you too!


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terribeth07 Apprentice

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
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:

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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
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

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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