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

Bowel Incontinence


Lynayah

Recommended Posts

Lynayah Enthusiast

Hello,

I know that diarrhea is a symptom of Celiac disease, but I am wondering: Has anyone here also suffered from bowel incontinence -- leaks that occur? Augh! Gross, I know. Sorry about that, but I just have to know if I'm not alone.

Thank you for any assistance.

Best,

Lyn


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



Celiac.com Sponsor (A8-M):



digmom1014 Enthusiast

Definately! Especially when I get into glutten somehow. I have been gluten-free for almost 2 yrs. and it still happen's occasionally. Give yourself a chance to heal and check for hidden gluten in your foods. I also recently have started doing kegel excercises-you know the one's your supposed to do to get your muscle tone back after pregnancy. I read somewhere that they are supposed to help so, I figured it couldn't hurt to try.

Sometimes, it is just nice knowing that other's are struggling with the same problem's you are.

daphniela Explorer

I had that after my gallbladder was removed. I always thought that was why I had issues.

ravenwoodglass Mentor

Yes it can, especially if it has attacked the nervous system. I got a lot of help with this from a physical therapist who specialized in patients with issues of that type. My nerve damage was severe so I do have some residual issues but I am much better than I was. Your doctor can give you a script for the PT and insurance should cover it.

Lynayah Enthusiast
Yes it can, especially if it has attacked the nervous system. I got a lot of help with this from a physical therapist who specialized in patients with issues of that type. My nerve damage was severe so I do have some residual issues but I am much better than I was. Your doctor can give you a script for the PT and insurance should cover it.

Thank you so much for this information. I do probably have nerve damage - numbness in toes and tingling in legs and arms. Told carpal tunnel for years, and perhaps that's true but I'm wondering if Celiac might have more to do with it. Time will tell.

I would be interested in hearing more about your nervous system issues.

Wow, can't believe how long you went without a proper diagnosis . . . or maybe I can . . . I'm 55 and just now beginning to understand what might have been wrong with me for so many years, including dangerously low Vit. D count - chronic, less than 6 (50 - 70 is good), which also caused problems.

Not sure if the Vit D thing caused the possible Celiac or vice/versa. So much to learn, here.

THANK YOU SO MUCH! I hope others will post here as well.

sixtytwo Apprentice

Glad to hear there are other people with this problem. It seems to happen to me if I get glutened or if I eat a lot of things with artificial sugar, like candy that is sugar free. It is so uncomfortable that it can happen and we are out among the public.

ravenwoodglass Mentor
Thank you so much for this information. I do probably have nerve damage - numbness in toes and tingling in legs and arms. Told carpal tunnel for years, and perhaps that's true but I'm wondering if Celiac might have more to do with it. Time will tell.

I would be interested in hearing more about your nervous system issues.

Wow, can't believe how long you went without a proper diagnosis . . . or maybe I can . . . I'm 55 and just now beginning to understand what might have been wrong with me for so many years, including dangerously low Vit. D count - chronic, less than 6 (50 - 70 is good), which also caused problems.

Not sure if the Vit D thing caused the possible Celiac or vice/versa. So much to learn, here.

THANK YOU SO MUCH! I hope others will post here as well.

With the numbness and the tingling going on you should get some sublingual B12. Make sure it is gluten free and make sure it is sublingual (dissolves under the tongue). The B12 should help with that and it will help your nerves 'heal' more quickly as it helps them to fire correctly.

My nervous system issues impacted me much like MS, in part because I have gluten ataxia and because of that I have issues with balance. I also had memory problems and mood issues, some of which has resolved but not completely.

Celiac can cause nutrient deficincies so it is likely the celiac caused the low D not vice versa.


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



Celiac.com Sponsor (A8-M):



Lynayah Enthusiast
With the numbness and the tingling going on you should get some sublingual B12. Make sure it is gluten free and make sure it is sublingual (dissolves under the tongue). The B12 should help with that and it will help your nerves 'heal' more quickly as it helps them to fire correctly.

My nervous system issues impacted me much like MS, in part because I have gluten ataxia and because of that I have issues with balance. I also had memory problems and mood issues, some of which has resolved but not completely.

Celiac can cause nutrient deficincies so it is likely the celiac caused the low D not vice versa.

Thank you for the advice on the sublingual B12. I will try it.

Counting the days here until I see the Doc. I just want to know!

Lynayah Enthusiast
Glad to hear there are other people with this problem. It seems to happen to me if I get glutened or if I eat a lot of things with artificial sugar, like candy that is sugar free. It is so uncomfortable that it can happen and we are out among the public.

Yes, it can be a real nightmare. You're soooooo not alone!

Lynayah Enthusiast

Ravenwoodglass,

I want to thank you most dearly for all your posts -- here and elsewhere. They have helped me so much.

ravenwoodglass Mentor
Ravenwoodglass,

I want to thank you most dearly for all your posts -- here and elsewhere. They have helped me so much.

Your welcome. I had such a long road to diagnosis and so much damage. Trying to help others not have to go through the same thing makes it seem those years of pain had a purpose. I hope the B12 helps you and if the incontinence continues even after your bowels are more regular do not be afraid to ask for a referral to a physical therapist that specializes in those issues. The PT I went to was the one who was really responsible for my finally getting a diagnosis. I had given up by then and she nagged me for over a month to see an allergist. His prescribed elimination diet was able to pinpoint the gluten issue and then my GI finally listened and I was able to be diagnosed.

  • 3 weeks later...
Lynayah Enthusiast
Glad to hear there are other people with this problem. It seems to happen to me if I get glutened or if I eat a lot of things with artificial sugar, like candy that is sugar free. It is so uncomfortable that it can happen and we are out among the public.

I've since talked with others who have the same problem. We're sooooooo not alone. Problem is, we never want to talk about it, so it goes hidden. I'm so glad for the responses to this post.

Thanks again.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,029
    • Most Online (within 30 mins)
      7,748

    Jen72
    Newest Member
    Jen72
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.