• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Encompresis
0

10 posts in this topic

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?

0

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.

0

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.

0

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!

0

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.........

0

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.

0

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.

0

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.

0

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..

0

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.

0

Share this post


Link to post
Share on other sites




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
      107,341
    • Total Posts
      935,584
  • Member Statistics

    • Total Members
      65,003
    • Most Online
      3,093

    Newest Member
    BetsyLopez
    Joined
  • Popular Now

  • Topics

  • Posts

    • Furthermore, getting a positive on the endoscopy will leave no doubt either in your mind nor in the minds of the rest of your family or friends. All first degree relatives of celiacs need to be tested every 2 or 3 years in the absence of symptoms & immediately if symptoms present since celiac can present at ANY age. So your parents, siblings & your children will need to be tested. Believe me, there is oftentimes a TON of pushback by family members simply because they don't want to have celiac so they stick their heads in the sand & say you're off your rocker, refuse to get tested because they say they don't have it and you don't have a concrete diagnosis so how can you be sure they need to be tested? Friends can be even more doubtful. People are really, really doubtful of people who don't have an ironclad diagnosis. I think it's stupid of them to be so negative & questioning what you know to be true but they are. I mean, when you say you are diabetic, no one doubts that you are, no one questions your diagnosis and everyone respects the implications of diabetes but that is not the case with celiacs. I think it must be that people can not conceive of never eating wheat flour again for life. They can easily accept a diabetics diet but not a celiacs. Yet they will grill you as if they are experts in celiac disease unless you can tell them you've had the full nine yards of testing & ARE, no doubt about it, celiac.
    • Hi ch88, You could try going nightshade free to see if it helps your arthritis.  It might help.  The common food nightshades are potatoes, tomatoes, peppers, eggplant, turmeric and paprika.  If you try nightshade free for one month that should be enough time to know if it helps IMHO. Sweet potatoes/yams are ok, as they are not nightshades.
    • Thankyou both of you for your advice, i will have the endoscopy will just have to wait, my blood tests were not hitting the roof with reading but a low to medium result, dont want to be one of them people who have gone gluten free with no need, however i do show typical symptons of celiac but no overwhelming symptons apart from feeling nauseous and crampy at times, and extreme tiredness. There is soooo much to learn
    • You are normal!  All the things you are going through are normal for someone with celiac disease....probably with any life changing illness.  What you need is patience.  Most here take a year to heal or longer due to setbacks on the diet or healing from systemic damage.  The nervous system seems to take the longest.  Ask your doctor to check you for any deficiencies.  No sense guessing what you might need.  It is a common and recommended practice to check for vitamin and mineral deficiencies.   http://www.cureceliacdisease.org/faq/what-common-nutrient-deficiencies-might-an-adult-experience-prior-to-diagnosis/ Once healed, you might not need any supplements, if you eat a wide and varied healthy diet.  
    • Yes!  Ask for the IgA deficiency test!  Why?  Well, your doctor did not even follow protocol.  In order to validate the IgA celiac tests, he should have determined if you are IgA deficient or not. http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf  I have never tested positive on the IgG tests and only had one positive on the IgA DGP test, but I was not IgA deficient, so my GI knew that my test was valid and I needed an endoscopy to confirm my diagnosis.  You do not know if any of your tests are valid.  You need the IgA test.  It is a control test only in the case of diagnosing celiac disease.  But....some celiacs are low in IgA and that seems to happen more often in celiacs than the general population.   https://www.theatlantic.com/entertainment/archive/2017/07/dunkirk-is-a-stunningly-spare-survival-film/534252/
  • Upcoming Events