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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.