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

Incontinence


nw0528

Recommended Posts

nw0528 Apprentice

Hi,

I'm new here - just diagnosed Thursday and just started gluten-free lifestyle.

My symptoms actually started this past July, but I believed it was a bout of IBS (for which I had been symptom-free since 2005) due to being about to return to work after being home with my son for two years - and having to then put him in daycare. Anyhow, I assumed when I returned to work and things settled down my symptoms would go away. They did not.

My primary symptom was very frequent bowel movements (but not always diarrhea), with great urgency and I was often not able to "hold it." Although this was two years after giving birth to my son my OB/GYN at my annual exam in December suggested the incontinence might be damage to the sphincter muscles from chidlbirth (although I did not have forceps, episiotimy, etc.) and referred me to a specialist for that (for a rectal ultrasound and other interesting tests to check the function of the muscles). My OB/GYN is also the one who found I was anemic and recommended I go to my primary care dr. while waiting for the appt. with the specialist.

Since then I went to my primary care dr. and she is the one who ordered the bloodwork and found the celiac disease. She said she hasn't had patients who have had incontinence as a symptom of celiac disease. I'm curious if any of you have had this symptom too.

Now I am trying to decide if I should keep or cancel the appt. with the specialist (it's this week). Even if he finds some muscle weakness, I wonder really if someone with perfect muscle tone/control would be able to control these bowel movements. My bowel movements drastically changed in every way in July - if they had not changed but I had had incontinence, I would think it might have been muscle control issue, but since it was the stools that were so different, I'm thinking the incontinence was related to celiac disease. (I'm only 35 and these symptoms did not start until two years after giving birth to my son.)

Thansk for any insight you can offer.

Nicole


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



Celiac.com Sponsor (A8-M):



CDFAMILY Rookie

Dear Nicole,

Yes bowel urgency is a sign of Celiac just not a commonly mentioned one. The reason probably is that most women/men do not want to mention bowel accidents to doctors. I did send a note to DR. Green to put this symptom on the list....but still don't see it.

I also had some IBS symptoms starting immediately after the birth of my first child 1981...mostly gas problems which I never had before.

Before the birth of my third child the urgency and accidents started. Before the birth I thought it was the iron that caused the problem. After the birth I thought it was my fourth degree rip (into my rectum). I mentioned it casually to my doctor who gave me the name of a doctor that does repairs. I never went. I figured this was just life and accidents didn't happen too often but there was always urgency.

Fast forward 2001 and the gas and urgency is getting worse. I finally discussed with my female doctor the difficult time I was having with gas and she told me if I tried all the over the counter medications, there was not much she could do. Still to embarrassed to mention the "other" problem.

Finally in 2005 when my symptoms increased to many neurological symptoms and a diagnosis of Myasthenia Gravis, I found info on Braintalk about Gluten Sensitivity and Celiac Disease. With their guidance and help I received a Gold star diagnosis. Within a year my urgency, accidents and gas were gone and I had a very seriously bad rip into my rectum and was told I would have control issues.

So, my thoughts are to wait a little while and if the problems don't clear up in a few months then maybe reschedule. You really don't want stitches and scarring in an area that doesn't need it.

Hope this helps.

ravenwoodglass Mentor

I had severe nerve damage due to celiac and this was one of the issues that finally got me diagnosed. Do keep the appointment with the specialist, I saw a GI surgeon. What he did was send me to Physical Therapist to see if she could help before he was going to do surgery. For me it got to the point where it wasn't just that I couldn't hold it, I couldn't tell I had to go until a few seconds before I needed to be in the bathroom. In my case the PT was able to help a great deal. She used a biofeedback type of thing and excercises that I did at home. It helped a lot although what helped me most was her nagging me to see an allergist to guide me through an elimination diet, I wasn't yet diagnosed at that point. I was very far advanced by the time I asked for help but I still got a pretty good resolution of the problems.

lizard00 Enthusiast

Open Original Shared Link

I found that article last year sometime while searching for something else celiac related. Anyway, it popped back in my head. I remember it being longer though, and that the woman had no issues after 6 months or something along those lines. But, maybe it's a different one.

Anyway, maybe your doctor hasn't had any patients with this specific symptom, but that doesn't mean it isn't one.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748

    Leeila
    Newest Member
    Leeila
    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

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...