• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Rate this topic

Recommended Posts

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?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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:

 

http://www.customprobiotics.com/custom-probiotics-infant-probiotic-formulation.htm

 

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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.........

Share this post


Link to post
Share on other sites
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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..

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,930
    • Total Posts
      943,576
  • Member Statistics

    • Total Members
      67,222
    • Most Online
      3,093

    Newest Member
    JLCF
    Joined
  • Popular Now

  • Topics

  • Posts

    • I have read the newbie 101 and have been careful about reading labels. I'm the only one that's gluten free in my household, so they could be contaminating me. I was eating gluten for 6 weeks after my blood test because it took that long to get an official diagnosis and my GP told me to still be eating it for the tests to be accurate. It was probably too soon to retest, but the test was accidentally ordered by the lab. I have been having an increase in joint pain over the last couple months and my rheumatologist ordered lab work. The lab saw the celiac panel had been ordered, but didn't see results so they added it on because they thought it still needed done.  My gut issues are starting to get better, but I'm thinking the joint pain might have been from the celiacs because all of the rheumatoid tests came back normal for the first time in twenty years.
    • Hi and Welcome to the Forum.  I am glad that you are here! As with a lot of things in life, try not to compare yourself to other people. You are trying to be the best version of yourself - not Jill, Annie, or Maya.  People make a lot of foolish decisions in the world and it does not mean that you should do it too.  Also, many people are gluten free for a lot of reasons that aren't celiac. One of my best friends has gluten sensitivity but not celiac.  He eats a lot of food that I won't touch due to possible cross contamination which he doesn't worry about too much.  Be true to yourself and keep your self healthy.  It is so hard, but it's better than getting sick! I hate not being able to partake in yummy food at parties, but I have learned what junk food I can eat.  I will make sure to buy some tortilla chips or Fritos for picnics.  I freeze gluten-free cupcakes to eat when we celebrate birthday parties (I can just take one out of the freezer and go).  I make sure to take a dish to share to potlucks.  I ask permission at restaurants and parties to bring my own food - no one has ever said no, and when there is a time to celebrate, I splurge on something I really like.  Fortunately, there are a lot of gluten-free foods that I really like. Do i miss pizza and really good burger? YES! And sometimes, I still feel awkward, but life is so much more than food.
    • Holy cow! You people are all angels! I have been suffering unbearably with these hot, itchy, and painful bumps on my scalp for a year now. Two doctors had no idea what it was, so I was sent to see a "dermatologist." To my utter shock, he told me I WAS DIRTY! HE TOLD ME TO WASH MY HAIR EVERY DAY with a shampoo called Nizoral, that it would take the itch away. He also prescribed a Vaseline based salve with a steroid in it. Guess what? It did nothing nor did the shampoo, and the more I washed my hair, the worse it gets. It's like torture, and I just can't stop scratching holes into my scalp. Then they scab over, then itch again. I was almost ready to shave my head, until I found this forum. I knew nothing about celiac disease, sensitivity to gluten... I knew nothing. Just so happened that my daughter found a paper talking about celiac during her visit to her GI yesterday. She brought it home for me, and demanded that I read it!  WHAM- a light come on, and I said to her... That IS what I have. I am going to my GP tomorrow to demand that I be tested for ciliac. I am rather terrified, as I am already a type 1 diabetic and have been on insulin for 52 years! I was blaming my diabetes the whole time. I have had a lower left leg amputation, and the last thing I need is to start getting this ungodly rash on my stump!!! Thank you everyone for all of the useful information you have provided in this blog. Maybe I'm not going to die after all! 😉
    • The University of Chicago recommends re-testing 3 to six months after going gluten free and then annually.  Most GIs wisely wait because although you can theoretically heal that fast, it takes TIME to master the gluten free diet.  It can take up to a year or longer for antibodies to come down.  As someone who has more than one autoimmune issue like myself (and only a DGP IgA that has ever been elevated), I think that impacts healing  and how quickly antibodies come down.   My recent endoscopy (5 years post diagnosis) revealed a healed small intestine, yet my DGP IgA was still at 80 (which was over 200 last April when I was somehow exposed to gluten).   Hang in there!  Wait six more months to get retested.  Look for other signs of healing (like anemia resolving, improve gut issues).  
    • Sounds great, one of my dreams is to open a grain free/gluten free food truck.......stone and mortar places would not do well here, but a mobile one able to cater....LOL dream I know, fundraiser has flopped and been running for a year. Hell I had the quotes up, the whole sale contracts setup, the business model and plan. I even tried to get loans, and business partners.....all flopped.
  • Upcoming Events