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

Encompresis


megsybeth

Recommended Posts

megsybeth Enthusiast

My son has non (?) celiac gluten sensitivity. The main symptom before diagnosis was explosive, horrible, horrible diarrhea. Well this is not a crowd that probably needs me to explain =). But he also has this other extreme. His most recent doctor recommended a book "The Ins and Outs of Poop". Great book with gross name and even grosser pictures. The book makes the case that kids get desensitzed, and stretched out in the colon from having stool held routinely and need a long time to get back on track.

 

The most popular way is Miralax but I just cannot find the right dose. For one thing, he'll sometimes not drink it all and I have to guess how much he got. If I tell him to drink it, well that's not happening. But when we get him in a groove (by giving really sugary soda to get the miralax down...) he'll get such loose stools that he doesn't make it to the toilet in the morning, not formed at all. If I reduce by one teaspoon, constipated, leaking, very bad behavior.

 

I have found that suppositories work miracles but my son doesn't agree and I feel like that's something you shouldn't force. I ordered some pedialax chewables from Amazon. Yes, I'm trying to up fiber and fluids (I even sprinkle flax meal on all his starchy foods to hedge them). I know I can do better but I also want my little boy to go to school which is really hard when he is either having diarrhea or constipation.

 

Any advice?


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

What about probiotics?  They are safe for children and I have to think it might help his alternating bowels situation.  Sure helped mine.

They are useful for colitis and diarrhea. I do not mean just eating yogurt, I mean something like this:

 

Open Original Shared Link

 

how old is he? Ask the owner to suggest the proper formula and dosage for him.

 

 

I know you have to put the miralax in something, but real sugary soda is probably not helping the cause. It may be making the stools too loose.

 

Can't say I blame him about suppositories. Not something I'd enjoy either. 

 

I know it is difficult when your wee one does not feel well and keeps having this problem, but this suggestion may well help.

megsybeth Enthusiast

Thanks, Irish Heart. I do give him probiotics every day. I'm not able to adjust when he gets them (some do better a few hours after eating) because there is just too much on my plate. And I'm not really sure if I should adjust the dosage beyond what is prescribed. I guess sugary soda isn't accurate, it's not high fructose corn syrup, just these sparkling apple ciders with a little juice in them. Last night I just did prune juice because he hadn't gone all day.

 

I do wonder how he can hold it. When we had to clean him out for his colonoscopy he did the "clean out" (MOM I think?) and didn't go, called doctor in the morning and she had me give him more, then a suppository in the hospital...didn't go. Of course he exploded in the room where they did the scope but the kid has some strange rectal powers when he's awake.

stanleymonkey Explorer

We were told 1 g for each kg of body weight. We got our four year old off miralax finally, we were told a kd should be on it at least 6 months to get their bowel to shrink and start working properly.

Soda is a diuretic, so you won't be helping matters. He seems to be having as difficult a time as my daughters were. You need to see his ped or a gastro to work out a proper dosing schedule, and a bowel management plan. The dosing needs to be followed exactly to the letter, given at the same time every day.

Giving too much could dehydrate him making the vicious cycle of encopresis worse, or not enough earning his bowel never gets a chance to heal.

You need to call your doc and be forceful about getting this dealt with now. We had a great ped and gastro, they worked with us to develop a plan for miralax, toileting and diet.

After we went gluten-free they were on less miralax as constipation was their main symptom. Patience and time means they are both doing great miralax free, if they don't poop one ay we give them a piece of gluten-free licorice! It helps!

stanleymonkey Explorer

I forgot to add miralax is odorless and tasteless just stick it in some broth even, don't tell him it's there he won't be able to tell. My 4 yr old never knew when she was getting hers and this is a kid who. An find a tiny piece of onion in a huge bowl of fried rice!

Holding in his poop is probably partly a control thing, so if he knows he's getting miralax he's losing control and will fight it by not drinking it. If he doesn't know.........

megsybeth Enthusiast

He's definitely being followed by a pediatric gi. I haven't done anything not recommended by them. I do think there's also a misunderstanding about what I'm giving him to drink. We drink seltzer which is pure water, sometimes add a little lemon. I also had some Martinelli's sparkling cider which had some juice in it. I think fructose can soften stools but obviously not that much or I wouldn't need miralax. Lately I'm adding prune juice to seltzer. It's not like I'm giving him a liter of pepsi ;) . I have a follow up next week and am recording my dosing and the staining/bms the next day so hopefully we'll have something to go off.

stanleymonkey Explorer

Prune juice is awesome my two would drink gallons! There sa light at the end ofbthevtunnel, after 2 1/2 of encopresis our 4 yr old is as regular as clockwork,,and no stainingbetc for more than 6 months. Good luck with your little guy, I knw how frustrating encopresis an e.


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



Celiac.com Sponsor (A8-M):



megsybeth Enthusiast

Prune juice is awesome my two would drink gallons! There sa light at the end ofbthevtunnel, after 2 1/2 of encopresis our 4 yr old is as regular as clockwork,,and no stainingbetc for more than 6 months. Good luck with your little guy, I knw how frustrating encopresis an e.

megsybeth Enthusiast

Thank you for this. It's so hard because it impacts (no pun intended) where and for how long he can go to school. He hides the staining from his teachers even though he's in a preschool that's supportive. He's going to a new school in June for summer camp and then full time in Sept. I'm worried if we can't fix this he'll be asked to leave..

stanleymonkey Explorer

If you have medical documentation they can't ask him to leave, it's a medical condition.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,034
    • Most Online (within 30 mins)
      7,748

    CE1963
    Newest Member
    CE1963
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • 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.
×
×
  • 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.