Jump to content
  • 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):

Kidney Problems?


scuzy

Recommended Posts

scuzy Rookie

Hello,

I have self diagnosed myself with Celiac Disease back in August. I have been feeling sooooo much better since I have been gluten free. It took me about two years to figure out that I had Celiac Disease and am wondering what kind of damage could I have done to my body within those two years of horrible symptoms.

Before I went gluten free I would get these really sharp pains in my lower right back (the doc says the kidneys). I noticed that when I went gluten free they almost went away. I also noticed if I were to get one of those painful episodes it was always around if I got glutened by something. So since I don't have health insurance I never went to the doctor for it. I finally went the other day because I had a really really really ext... painful episode for about 5 hours. The doctor felt around and said that he felt a mass on my right kidney and he also found blood in my urine. I had a CT scan today and the doctor called me to tell me he was stumped. Everything came back fine, there was nothing abnormal about the scan, he has no idea what is wrong with me. I mentioned to him I believe I have Celiac Disease so he said that it could be causing pain and that when my insurance starts next month to go to a Gastroenterologist. So my question to everyone is... Does anyone know if Celiac can cause kidney problems? And how would the doctor figure it out if I am gluten free? I would hope he wouldn't have to gluten me to figure it out...


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I have the same issues with the kidneys that you describe. As long as I stay away from gluten I am pain and bleeding free. Can't say it will be the same for you. If you want a diagnosis of celiac from the GI you need to go back on gluten for a couple of months. If you just can't stand the pain of that then keep in mind we don't need a doctors permission to be gluten free.

scuzy Rookie

I have the same issues with the kidneys that you describe. As long as I stay away from gluten I am pain and bleeding free. Can't say it will be the same for you. If you want a diagnosis of celiac from the GI you need to go back on gluten for a couple of months. If you just can't stand the pain of that then keep in mind we don't need a doctors permission to be gluten free.

True. But is it possible that the gluten has damaged them somehow? And that it could have caused some other medical condition that we should know about? I mean kidneys are very important. :)

ravenwoodglass Mentor

True. But is it possible that the gluten has damaged them somehow? And that it could have caused some other medical condition that we should know about? I mean kidneys are very important. :)

If you are continueing to have pain and blood in your urine and possible problems with your kidney that are concerning you then it might be a good idea to see a nephrologist. They specialize in kidney issues. If your symptoms have been relieved with the diet then IMHO it would be counterproductive to gluten yourself for the 2 or 3 months it would take to see a GI and possibly end up still with a false negative on celiac testing.

Archived

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

  • 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. - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

    2. - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

    3. - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

    4. - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442

    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems.
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
×
×
  • Create New...