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 Control

Roxanna

Recommended Posts

Roxanna Newbie
Roxanna
Posted

Can anyone answer this question. I have a 25 yr old son that has all the neurological sympotms of gluten sensativity. He has never been able to control his bowels. He has trouble feeling. He has many nuerological problems. The doctors just say that the loss of control is due to his not being able to feel. I think all of it has to do with gluten. Can someone give me any idea if it could be gluten. He is so embarrassed and doesn't know what to do.

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

Celiac.com Sponsor (A8-M):


Nantzie Collaborator
Nantzie
Posted

Yes. When mine was at it's worst, I would have to push my kids out of the way to run to the bathroom 10 feet away. Sometimes I wouldn't make it. I was scared to go anywhere because it happened without notice. It would just start coming out. Like your son says, I couldn't even feel it until it was already happening. It was horrible. I hope this ends up being an answer for him.

Nancy

jerseyangel Proficient
jerseyangel
Posted

Hi Roxanna, and welcome :)

My heart goes out to your son. I think it's possible that he could be sensitive to gluten. I don't understand your doctors saying that it's just his inability to feel. That makes no sense to me--does he have a condition that would cause this? Many times, doctors don't think to look for Celiac or another dietary cause--and label the patient with IBS or use some other excuse for not finding the root cause of the problem.

I have 2 sons, both in their 20's and I just feel so bad that your son is having to deal with this problem. Have you asked for him to be tested for Celiac? If you want, I will send you the list of tests in the Celiac Blood Panel. Celiac can also cause neurological problems--I have been diagnosed with anxiety disorder, and experienced depression before I was diagnosed.

I had the urgency problem from right before I was diagnosed to several months after. During that time, I was becoming used to the gluten-free diet, and surely making mistakes here and there--especially with my personal care products. When I was truly gluten-free, it began to get better.

Much like Nancy, the feeling would come over me very suddenly, and I would have to run to the bathroom. There were times that I didn't quite make it in time. It would start, and I just couldn't control it. It was awful, and it only added to my anxiety.

Gradually, after being gluten-free for a while, it happened much less often. Then, thankfully, it stopped happening altogether. I still panic if I get an odd cramp--especially if I'm not at home.

Something is irritating his system--I would say the first thing to do would be to try and identify the cause, and eliminate it. Gluten is a good place to start--dairy foods are another. When the intestinal villi are damaged, they can not produce the enzyme necessary to digest dairy. If you are planning to have him tested, don't put him on the diet until after the testing. (it could skew the results)

Good luck with everything--contact me anytime :)

Pacer Rookie
Pacer
Posted

Another vote here. My son (age 6) had this problem every day up til the day we took him off gluten (well, let's say 24 hours later).

He came up a very high positive on EnteroLabs testing. Also, removal of gluten removes all of his negative symptoms. I feel bad, because we thought he was being difficult with potty training all this time. :-/

Heidi

Lisa Mentor
Lisa
Posted
Can anyone answer this question. I have a 25 yr old son that has all the neurological sympotms of gluten sensativity. He has never been able to control his bowels. He has trouble feeling. He has many nuerological problems. The doctors just say that the loss of control is due to his not being able to feel. I think all of it has to do with gluten. Can someone give me any idea if it could be gluten. He is so embarrassed and doesn't know what to do.

Roxanna:

I cannot tell you the pants that I threw out. Two months I could not leave my home. This "no feeling" is nonsense. I remember needing the bathroom which was six seconds away and I got there in seven seconds. Granted, there was no warning, or very little. That was a discussed lost of several good jeans. This was relieved after two months of eating gluten free.

If he is willing to take the gluten free diet seriously and be diligent, I think he will see drastic changes, to include the nero symptoms, after a totally free diet.

Hope this helps.

You have others that are posting good information.

Archived

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

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


  • Member Statistics

    • Total Members
      131,911
    • Most Online (within 30 mins)
      7,748
    Cici123
    Newest Member
    Cici123
    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

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.