Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Here - Just Trying Gluten Free

celiac2010

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    2. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    4. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.