Potty Training A Newly Diagnosed Celiac

[Luvs to Scrap]

We recently forced the blood testing issue with our doctor since Luke has had major D and we cannot get him to go in the potty. He pees there most of the time if we ask him to try but has no idea when he needs to do the other. He has had some almost solid stool since going on the diet but still has mostly D or very slimey stool. How long will he need to be gluten-free before he will have solid stools? Is it normal for a celiac to not know that he needs to go until he has already gone? (He is my oldest so we haven't potty trained before) Luke will be 4 in September and potty training has been a problem for awhile. Discovering he has celiac like his dad has us hoping that that is the underlying problem. We are having him start preschool in the fall and he is supposed to be potty trained--is there hope that his D will be regualated by then? If not, does anyone have experience with how they worked with the school on an issue like this? Thanks in advance for your ideas and help. This gluten-free diet is such a stress but I know we need to do it for Luke to feel better.

[mommida]

You can't push (for lack of a better word) any child to potty train. You are there for guidance, support, and praise. The rest is up to your child.

Your child will be able to control a BM once his body heals and he is not having gluten reactions.

Welcome to parenthood, sometimes you are just there for the ride.

L.

[Nic]

I will also add, that an otherwise healthy child, who happens to have D, sometimes cannot control it. They may feel as though their passing gas and then it is too late. I have seen that happen a couple of times with both my children and only one is a Celiac. I would think that once his stool hardens a bit, he will be able to control it better. My father is a Celiac and his main symptom was D and he began to feel better within 2 weeks. My son on the other hand main symptom was constipation and it took 3 months to see great improvement and unfortunately, he still has problems (we are further testing now). How long has he been on the diet?

Nicole

[Luvs to Scrap]

I will also add, that an otherwise healthy child, who happens to have D, sometimes cannot control it. They may feel as though their passing gas and then it is too late. I have seen that happen a couple of times with both my children and only one is a Celiac. I would think that once his stool hardens a bit, he will be able to control it better. My father is a Celiac and his main symptom was D and he began to feel better within 2 weeks. My son on the other hand main symptom was constipation and it took 3 months to see great improvement and unfortunately, he still has problems (we are further testing now). How long has he been on the diet?

Nicole

He has been totally gluten free for a month. Before that he ate gluten at breakfast and lunch when my husband wasn't home (he has celiac) and we ate as much the same as my husband when he's home--too much of a pain to fix 2 meals and Jason has to be gluten-free. His D seems to be improving in that he has a more solid one once in awhile but they are still mostly loose. Kendra

[fullofhope]

I think that as his stools get closer to normal, he will learn to control them. Speaking from personal experience, D from celiac was the strangest thing. It wasn't like normal D, in that I (as an adult!) really honestly didn't realize it had happened til after the fact. Very very bizarre and demoralizing, esp to a child who feels pressure to train. Beyond that, in a child who has always had that kind of D, it may take a while for his body and brain to realize what it feels like to have to go- perhaps he's become desensitized. With time, he will train. We are dealing with similar issues with my son. He's been gluten-free for 9 mo, but had D from a number of other allergies and we are just now starting to sort them out- and I find myself frustrated, thinking "surely you knew you had to go!" but he didn't.

[Esther Sparhawk]

Annie is 3 years and 5 months old. She started the gluten-free diet last August. It took us a while to get the diet to effect her stools, but she has normal stools nearly all of the time now.

I started potty training Annie at 2 1/2 years old, not knowing she was a celiac. It was like banging my head against a wall. After she got on the gluten-free diet, we came across a new problem. She went from being almost potty trained with mild D to having solid stools and starting all over again.

Part of potty training is learning to feel when your body needs to poop. It's a whole different sensation: D vs. solid stool. When her stools turned solid, she had a lot more accidents all of sudden. I would sit on the side of our bathtub while she pooped and talk to her about "Now feel how that feels, when you're pooping." I could see her processing the information. She would talk about how her bottom "hurts" when she pooped solid. I think this could have been a deterrent. She didn't want to poop, because the poop didn't come out as easily -- it took more push from her.

Some of the things I've done to help her:

1. gave her a rubber stamp on her hand for every successful poop

2. sat with her and talked about body sensations while she pooped

3. didn't act angry if she had D or a D accident-- attributed this to dietary problems, to help her make the connection about what it means to be a celiac

4. showed her pictures of the digestive tract and discussed where poop comes from -- food goes in, poop comes out

5. made her look at her own poop, to understand the difference between what healthy poop looks like and what D looks like (this helps them understand that there is a difference-- and they start to connect to the difference in the way the body feels)

6. read to her from potty training books

I'm told there's a great book for kids about celiac disease. I intend to buy it. Does anybody know what it's called?

[Luvs to Scrap]

Annie is 3 years and 5 months old. She started the gluten-free diet last August. It took us a while to get the diet to effect her stools, but she has normal stools nearly all of the time now.

Thank you so much for your ideas and encouragement that sometime this is going to happen. How long after your daughter was gluten-free did she start getting normal stools? As he nears his 4th birthday in Sept it is hard not to feel frustrated and pressured to get him potty trained. I keep having to remind myself that he still has D and doesn't seem to know he is going until after it happens. We are waiting for test results on my 17 1/2 month old to see if she needs to be on the diet too. (Hopefully we can avoid this problem for her!) Kendra

[ArtGirl]

Kendra,

It must be very frustrating for you as a parent with the difficulty in toilet training your son. I think you've had good advice.

I am about 2 months into the gluten-free diet and still have very loose bowels - now and again I don't exactly make it to the toilet in time. And I'm an adult! I should know better than to put off running to the bathroom at the very first feeling of needing to go. But I get busy and don't want to be bothered. And, oops, AGAIN!

I'm wondering if your husband could talk to Luke about what it's like to have celiac - sort of guy-to-guy sort of thing. He could talk to his son about how eating gluten makes him have D, too, and what he does to avoid accidents. (Of course, if your husband gets C, that probably won't work.) But, still, boys really like to be chummy with their Dads and this condition they have in common could be a real bonding thing for them and could really help Luke as he tries to be just like his Dad.)

Just a thought.

[Esther Sparhawk]

Thank you so much for your ideas and encouragement that sometime this is going to happen. How long after your daughter was gluten-free did she start getting normal stools? As he nears his 4th birthday in Sept it is hard not to feel frustrated and pressured to get him potty trained. I keep having to remind myself that he still has D and doesn't seem to know he is going until after it happens. We are waiting for test results on my 17 1/2 month old to see if she needs to be on the diet too. (Hopefully we can avoid this problem for her!) Kendra

How long before Annie started to have normal stools? Well keep in mind that everybody is different. For Annie, we started the diet in August, but it wasn't a perfect diet yet. I hadn't learned how to protect her from cross-contamination; I was still giving her vitamins which proved to contain gluten later; I even gave her toothpaste that wasn't appropriate. It takes a while before the adult in charge (usually me) really thinks about every single thing she might put in her mouth as a possible contaminate. So largely due to my own mishaps probably, Annie's loose stools didn't start to stiffen up until about January. Even then, whenever she would visit a grandparent, there would be accidents with her diet, and it was as if we were starting the diet all over again.

It seems like she didn't start to have truly solid stools until very recently. One factor is related to our daycare situation. In May, Annie's preschool program ended. Now she's at home with me all the time. I'm able to more cautiously guard everything in her diet. So I would say, starting in May, that's when her stools became a more "normal" consistency, coinciding directly with the end of preschool. That's nearly nine months after we started the diet.

I'm concerned that when she returns to preschool in the fall, her stools may loosen up a bit. Our daycare is the best in this area, but I think she gets cross-contamination at the lunch table, at snack time, from other kids' fingers, and that sort of thing. I do pack her a sack lunch and provide her with her own gluten-free snack time treats, but even the cleanest daycare facility has kid-to-kid cross-contamination.