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

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

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

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

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
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.

  • 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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.