Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Celiac And Kidney Reflux? A Connection?

Sarahsmile416

Recommended Posts

Sarahsmile416 Apprentice
Sarahsmile416
Posted

I had my ultrasound today as I guess the precursor to my endo and it brought up some questions that I was trying to research online but didn't come up with much.

As a child, I was diagnosed with kidney reflux...and is usually the case, by the age of 12, everything had worked itself out. However, I found out today, that as a result, my left kidney is much smaller than my right, no doubt due to the reflux. Thus, I was wondering whether there is a connection between the two problems...or are the two unrelated?

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

Celiac.com Sponsor (A8-M):


Kamma Explorer
Kamma
Posted

You might find this interesting:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/Kidney-Disease-and-Celiac-Disease/

Sarahsmile416 Apprentice
Sarahsmile416
Posted
  • Author

Thanks, Kamma! Didn't see anything about reflux specifically, but perhaps that means there is no true link. I guess my next perusal of research would involve kidney size and eventual celiac...because as I said, my left kidney is smaller than my right due to the damage that my past history of reflux as a child caused.

Kamma Explorer
Kamma
Posted

Shortly after I had completed the gluten challenge, I was showing protein in my urine which can imply more serious things. I get my blood tested every six months to monitor it. During the initial round of testing, I had posted some questions here regarding celiac/kidneys and one mother replied that it was through their son's kidney failure that they found out he was celiac. I'm not fully up on the ins and outs of it all but there appears to be a tentative connection between the two for some people.

Does your smaller kidney affect the rate / ability to filter overall?

Sarahsmile416 Apprentice
Sarahsmile416
Posted
  • Author

Shortly after I had completed the gluten challenge, I was showing protein in my urine which can imply more serious things. I get my blood tested every six months to monitor it. During the initial round of testing, I had posted some questions here regarding celiac/kidneys and one mother replied that it was through their son's kidney failure that they found out he was celiac. I'm not fully up on the ins and outs of it all but there appears to be a tentative connection between the two for some people.

Does your smaller kidney affect the rate / ability to filter overall?

Hi Kamma-

For awhile, I had a great deal of protein in my urine as well, but for the last couple of years, it's been okay.

In answer to your question, yes, I think at times it probably hinders its ability to filter (hence the protein in the past). I have been told numerous times that if I have a UTI it would be important to treat it right away because the kidney probably couldn't take that much more than it has. I think it's been fine the last couple of years, but it is something I have kept an eye on for awhile now.

Kamma Explorer
Kamma
Posted

I did some checking as well and could only come up with IgA nephropathy and it's close connection with gluten intolerance. Jeez! This kidney reflux thing is a rare bird!

The IgA nephropathy seems closest to what causes the protein in the blood/poor filtering. Did you have scarring in the kidney's due to the reflux?

Curious, how long have you been gluten free and is that correlated to lower levels of protein in the blood?

Sarahsmile416 Apprentice
Sarahsmile416
Posted
  • Author

I did some checking as well and could only come up with IgA nephropathy and it's close connection with gluten intolerance. Jeez! This kidney reflux thing is a rare bird!

The IgA nephropathy seems closest to what causes the protein in the blood/poor filtering. Did you have scarring in the kidney's due to the reflux?

Curious, how long have you been gluten free and is that correlated to lower levels of protein in the blood?

Hi -

Not sure how much scarring there is...my guess is that it's probably healed a lot from when I was a child. My nephrologist told me when I was a kid that my one kidney was pretty damaged and if I wasn't careful it might have to be taken out. I don't know if he was trying to scare me into taking my medicine and to go to the bathroom right away when I had to go, but I never forgot that. So, I'm thinking at one point, it might have been worse off than it is now.

I am actually pre-diagnosis. I have my endo next Wednesday, so I have not been gluten free. I think the lack of protein in my urine probably has to do with aging and the fact that I am farther removed from my childhood reflux. The small kidney just serves as a reminder, I suppose.

My doctor called me today to tell me about my small kidney...after I hung up I realized I should have asked about whether there may be a connection between the two. Maybe I'll ask before my endo.

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

Celiac.com Sponsor (A8-M):


michellelmu Newbie
michellelmu
Posted

Just to chime in - I was recently diagnosed with Celiac's... and I have protenuria in my kidneys (excessive protein found in the urine) and battled reflux in my early 20s and am not 29...so my kidneys are both scarred. my IgA's are very high and my inflammation results from the blood work are abnormally high... all this seems to be relevant to the celiacs as much as my nephrologist, rheumatologist and internal med drs know of. Time will tell!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,674
    • Most Online (within 30 mins)
      7,748
    Susieq2
    Newest Member
    Susieq2
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • StevieP.
      Cruise and GliadinX

      By StevieP. · Posted

      Thanks so much for that information!! That helps me out alot!!
    • Scott Adams
      Help needed

      By Scott Adams · Posted

      It’s completely understandable to feel confused and anxious—colonoscopy prep can feel overwhelming, especially when you’re already dealing with symptoms like loose stools and elevated inflammation markers (that high calprotectin and CRP definitely warrant further investigation!). Regarding the senna tablets: The warning about avoiding senna with IBD (like Crohn’s or colitis) is typically because it can irritate an already inflamed colon. Since you don’t yet have a confirmed diagnosis—but your brother has colitis—it might be worth calling your gastroenterologist’s office today to clarify if you should skip the senna given your symptoms and family history. Some clinics have an on-call nurse who can advise quickly. For the prep itself: Plenvu is strong, so if your bowels are already loose, the senna might be overkill. Stick to clear liquids tomorrow (broth, apple juice, etc.) and stay near a bathroom! For anxiety, remember the procedure itself is painless (you’ll likely be sedated), and the prep is the hardest part. Bring a phone charger or book to the clinic, and treat yourself afterward to something gentle on your stomach (like mashed potatoes or yogurt). Hang in there—this is a big step toward answers. You’re doing great advocating for yourself!
    • Scott Adams
      Wheat Straw Dishes

      By Scott Adams · Posted

      Great question! Wheat straw dishes are typically made from the stalks of wheat plants (which are naturally gluten-free) combined with a binding resin. While the straw itself shouldn’t contain gluten, the safety depends on how the product is processed. Some manufacturers may use wheat-based binders or process the straw in facilities that handle gluten, creating cross-contact risks. To be safe, I’d recommend reaching out to the company directly to ask: 1) If their wheat straw material is tested to confirm it’s free of gluten proteins, and 2) Whether the production line avoids cross-contamination with gluten-containing ingredients. Many brands now cater to gluten-free consumers and will provide detailed answers. If you’re uncomfortable with the uncertainty, alternatives like bamboo, ceramic, or glass dishes are inherently gluten-free and worry-free. Always better to double-check—your diligence is totally justified!
    • Scott Adams
      Lost

      By Scott Adams · Posted

      I’m so sorry you’ve been struggling for so long without the answers or relief you deserve. It’s incredibly frustrating to have a celiac diagnosis yet still face debilitating symptoms, especially after decades of strict gluten-free living. Your history of chronic health issues—SIBO, food allergies, recurrent infections, and now potential complications like nerve pain (left leg) and mucosal ulcers—suggests there may be overlapping conditions at play, such as autoimmune comorbidities (e.g., Hashimoto’s, Sjögren’s), nutrient deficiencies, or even refractory celiac disease (though rare). Stanford is an excellent step forward, as their specialists may uncover missed connections. The medical gaslighting you’ve endured is unacceptable, and while legal action is an option, focusing on thorough testing (e.g., repeat endoscopy, micronutrient panels, autoimmune markers, skin biopsy for dermatitis herpetiformis) might be more immediately helpful. Menopause can absolutely exacerbate underlying inflammation, so hormonal imbalances should also be explored. For symptom relief, some in the celiac community find low-dose naltrexone (LDN) or mast cell stabilizers helpful for systemic issues, but a functional medicine doctor (if accessible) could tailor supplements to your needs. You’re not alone in this fight—keep advocating fiercely at Stanford. Document everything meticulously; it strengthens both medical and potential disability claims. Sending you strength—this shouldn’t be so hard, and you deserve real solutions.
    • Scott Adams
      Immunologist Referral if IgA Deficient

      By Scott Adams · Posted

      Since you have a confirmed celiac disease diagnosis alongside severe IgA deficiency, consulting an immunologist is a reasonable step to better understand the implications of your immune status. While many IgA-deficient individuals remain asymptomatic, the deficiency can occasionally be linked to increased susceptibility to infections, autoimmune conditions, or other immune-related concerns. An immunologist can assess whether additional monitoring or preventive measures (e.g., vaccinations, infection screening) are warranted. Given your location in Atlanta, academic medical centers like Emory University may have immunologists familiar with IgA deficiency, even if they don’t specialize exclusively in it. Telemedicine is also a great option—consider reaching out to specialists at institutions like the NIH, Mayo Clinic, or Cleveland Clinic, many of whom offer remote consultations. If you haven’t already, checking with the Immune Deficiency Foundation (IDF) for provider recommendations might help. It’s always wise to gather expert insight, especially since celiac and IgA deficiency can coexist with other immune dysregulation.
×
×
  • Create New...