Fecal Incontinence And Gi/celiac

[AliB]

My eldest grandson has been having a problem with his bowels for the last four or five months. The poor little love seems to be almost constantly messing himself and appears to have no control over it. It's not quite diarrhea but is soft and quite pale and sticky which could be indicative of Celiac.

My daughter is trying to get him gluten-free although some continues to creep through here and there which may be enough to keep the problem going. His blood tests came back, one negative and the other 'borderline - no action', whatever that means. She's seeing the doc next week. At the end of the day you can't be 'borderline' Celiac, you either are or you aren't!

Has anyone else had experience of this with their children before going gluten-free?

[dandelionmom]

My daughter couldn't potty train until she was gluten-free. We tried everything. When she was diagnosed, we planned on putting potty training on the back burner but she completely trained herself within a couple of weeks of the diet. She was younger than your grandson but when she is accidentally glutened, she has accidents even now.

[okgrace]

My daughter has had trouble holding her bowels during times of contamination. We started the gluten free diet in jan. She potty trained at 2 with little trouble, but about a month ago she was unable to make it to the toilet and was having accidents daily until I took other suspicious foods out of her diet and rechecked all of the gluten free stuff. after a week - two weeks without nightshades, dairy, soy, garbanzo beans, lentils, and peanuts, she stopped having accidents and is having solid stool for the first time in a number of weeks,

I hope your grandson feels better soon!

[AliB]

My daughter has had trouble holding her bowels during times of contamination. We started the gluten free diet in jan. She potty trained at 2 with little trouble, but about a month ago she was unable to make it to the toilet and was having accidents daily until I took other suspicious foods out of her diet and rechecked all of the gluten free stuff. after a week - two weeks without nightshades, dairy, soy, garbanzo beans, lentils, and peanuts, she stopped having accidents and is having solid stool for the first time in a number of weeks,

I hope your grandson feels better soon!

Thanks - can I ask how old your daughter is please?

We did wonder about soy, but I think my daughter needs to clean up his diet to make sure all gluten is eliminated before looking at other possibilities.

[debmom]

My daughter, also gluten free and very strict, had similar issues. Her doctor decided to test her for cystic fibrosis, but I asked if there were any foods that could cause that stickiness which is a sign of CF. He said that applesauce was the only food he knew that could. She had been eating a ton of it, so we had her quit eating it for a while. The problem went away. If your grandson eats a lot of applesauce, you might try removing that for a while and see if things improve.

[AliB]

My daughter, also gluten free and very strict, had similar issues. Her doctor decided to test her for cystic fibrosis, but I asked if there were any foods that could cause that stickiness which is a sign of CF. He said that applesauce was the only food he knew that could. She had been eating a ton of it, so we had her quit eating it for a while. The problem went away. If your grandson eats a lot of applesauce, you might try removing that for a while and see if things improve.

To my knowledge he doesn't eat applesauce at all. He does like fruit and will eat an apple sometimes but I don't think it is an everyday occurrence although I will check with my daughter to see if he has apple at school every day for his break snack. I wasn't aware of apples causing a problem like that but we are all different so it might for some.

[Ridgewalker]

Bowel incontinence was actually THE major symptom that made me suspect my older son, Lucas, had Celiac. At age 6, he was still having poopy accidents. He never had a period in time where he consistently pooped in the potty. I believe he had Celiac for years before we figured it out. The accidents were usually small amounts, several times a day. In hindsight, I realize this was caused by constipation from his Celiac.

When kids get constipated, they will often have accidents in small amounts because softer stool will leak past the harder blockage. You may not realize they're constipated because the stool you see is soft, and they may do it several times a day. With my son, it also had a very sticky, sandy texture.

He would also sometimes have larger accidents-- he never felt the bm coming.

I really, REALLY feel for any mother (and child!) who has to go through this. It's basically torture. You have to take changes of clothing everywhere you go, just like with a baby. There's the constant fear that accidents will happen at school-- and with my son, they have. Also in the car, in the store, at friends' and relatives' houses... Loads of stinky laundry, stained clothing...

And before we realized what was causing it, there were constant efforts to make him stop doing this. Bribery, rewards, yelling, punishment, praise when he made it to the toilet, for YEARS... Guilt and fear that I'm not doing right by my child, because I couldn't even potty train him correctly...

My son pretty much has a complex about pooping now, that we're STILL working to undo. He hates going to the bathroom, even when he's having normal bm's. And if he does have an accident, he hides it and lies about it. (The ONLY thing he lies about, ever.) He's 7 now, and has been gluten-free for a year.

I wish I knew then what I know now.

My sons' incontinence comes back when he's glutened. And it lasts MUCH longer than any of his other gluten symptoms.

This problem should be listed on Celiac kids symptom lists! It should also be mentioned in all the articles about bowel incontinence you can find on medical websites.

[AliB]

Sarah, you don't know how glad I am to see your post. It is just Connor to a T! He is not much younger than Lucas - he will be 7 at the end of the month.

It is terribly frustrating for him, and for his Mum who has to deal with it constantly. It would be bad enough under normal circumstances but when the poo smells like someone died it's just gross. Poor little man. I know he can't help it and it is very distressing.

They too have gone through the gamut of anger, bribery, nagging. When the whole house constantly stinks of poo the frustration is understandable. In trying to clean himself he inevitably gets it on his hands then it ends up around the house (what is it with little boys and soap and water?!!!)

He has said that he doesn't know he's done it at the time. We couldn't understand that - to have you say the same is making it more understandable.

It's weird. I was just reading in the paper the other day that sphincter problems are quite common in children - I wouldn't be at all surprised if gluten isn't at the root of it all!

I read your post to my daughter and she is going to screw down the gluten-free diet and make sure he is not getting any gluten at all. If it is gluten then any exposure even minute, if it is regular, will just keep the problem going. It has to be 100% or not at all.

She's been doing it now for about 2 months but it has been creeping in here and there and although the school has had a doctor's note for his school dinners and he is officially gluten'free, how can we know how good they are at dealing with it? I suppose the only way to tell is if he is off it here and at home and he gets glutened then it pretty much must be from school. How do you deal with that? Do you provide a packed lunch? If so, what do you put in it?

When they came up for the 'Easter' school break they were here for nearly 2 weeks and he hardly had a problem at all. I am very gluten conscious and have little, if anything in the house, for my own benefit, so apart from oat gluten in some cookies we made I am pretty sure he didn't get anything at all until about 2 hours before they left to travel back home when we visited friends and I stupidly let him have 2 Jaffa cakes. By the time they were leaving the problem started again but we weren't sure if it was the gluten or the stress of going home, or both! We were surprised a reaction would happen that quick but it's possible I'm sure.

Thank you so much. It has given us renewed determination to sort his diet out and help him get past all this.

[Ridgewalker]

He has said that he doesn't know he's done it at the time. We couldn't understand that - to have you say the same is making it more understandable.

Oh my goodness! If I had a nickel for every time Lucas has said to me, "I didn't know I had to go," or "I didn't know the poop was there," I would be a rich woman!!! And we would ask him, bewildered, "How can you possibly not know you've pooped?" I have to say, Connor sounds so much like Lucas, I'm amazed!!!

The house smelling like poop... yes, I've had that too. There have been days when my mom comes over and I ask her, "Does it smell like poop in here? It must... it's all I can smell anymore."

Even now, I sniff my children almost every time they walk by, it's such a strong habit. (My younger son has some of the same problems, although to a lesser extent. His stronger symptoms are neuro ones.)

For school, I always pack all his food. In the US, especially in rural areas like where we live, schools are not accustomed to providing special foods for certain kids. And if they tried, I would not trust it.

Some people pack hot foods in thermoses, but so far we've stuck with cold foods. I pack pretty much anything he likes that is cold, and I put an ice pack or two in his lunch box. Some common things I send for him:

- Peanut butter and jelly sandwiches made on homemade gluten-free bread

- Carrot sticks

- Pickles

- Potato chips

- Apples, peaches, grapes, strawberries

- Yogurt

- Applesauce

- Cheese

- Pretzels

- Raisins

- Sunflower seeds

- Dry gluten-free cereal

By the way, if your daughter ever wants to talk to someone who's been through what she's going through, please send me a PM and I'll send you my e-mail address!

[AliB]

Oh my goodness! If I had a nickel for every time Lucas has said to me, "I didn't know I had to go," or "I didn't know the poop was there," I would be a rich woman!!! And we would ask him, bewildered, "How can you possibly not know you've pooped?" I have to say, Connor sounds so much like Lucas, I'm amazed!!!

The house smelling like poop... yes, I've had that too. There have been days when my mom comes over and I ask her, "Does it smell like poop in here? It must... it's all I can smell anymore."

Even now, I sniff my children almost every time they walk by, it's such a strong habit. (My younger son has some of the same problems, although to a lesser extent. His stronger symptoms are neuro ones.)

Oh wow - even I remember that so well from when the kids were little - I could smell poo even when there wasn't any!!! You get so used to it, you're immune! My daughter is trying to sell her house and move up here with us and gets neurotic when she has a viewing in case there is a smell! (Put on the coffee, pop a gluten-free cake in the oven!!)

For school, I always pack all his food. In the US, especially in rural areas like where we live, schools are not accustomed to providing special foods for certain kids. And if they tried, I would not trust it.

Some people pack hot foods in thermoses, but so far we've stuck with cold foods. I pack pretty much anything he likes that is cold, and I put an ice pack or two in his lunch box. Some common things I send for him:

- Peanut butter and jelly sandwiches made on homemade gluten-free bread

- Carrot sticks

- Pickles

- Potato chips

- Apples, peaches, grapes, strawberries

- Yogurt

- Applesauce

- Cheese

- Pretzels

- Raisins

- Sunflower seeds

- Dry gluten-free cereal

Well, the school knows they have to do it but we're not sure how good they are. He had fish cakes a couple days ago, seemingly with 'breadcrumb' coating. I wonder what that was made from and how diligent they are at checking. I will be glad when (and if, in this financial climate at the moment!) they move as the school is within shouting distance here in our village and Connor and Ashley (his little brother) will be able to come home for lunch which would make the control a lot better and mean that they are less likely to feel isolated with a 'different' diet.

How do you make your gluten-free bread can I ask? We haven't yet found a palatable one. Is it yeasted?

[okgrace]

Hi Ali B,

Sorry I didn't get back to you sooner. Your daughter is lucky to have a supportive mom. My mom is realizing that some of the symptoms my daughter has fit her and just got tested and started a gluten-free diet. Instead of educating herself she stops by my house for dinner! Which I love, but sometimes feel put upon since she's like " I have a meeting in 20 minutes can you scramble me an egg?" Meantime I am trying to make dinner for my own family. Oh well, glad I can help her.

My daughter is four. Which might sound young to some, but I am talking about a child who around 15 or 16 months wanted to potty train, but didn't become fully trained until she was two. She was however bm trained from a very young age all on her own. Until recently. I also recently removed all other possible allergens because I felt like I had the gluten-free thing nailed and we still were having bm accidents. I removed peanuts, garbanzo beans, and lentils -lectins, Bannanas, nightshades, soy, and dairy. The diahrea cleared up in about a week and a half. It is time to add some foods back in, but I am going to talk to the Naturopath first to see which one to test.

Good Luck to your grandson, this must be so difficult for him. How is his self esteem? Good I hope.

[AliB]

He's alway suffered with low self-esteem and confidence. He's a very insecure little boy - not helped by his Daddy leaving when he was 2 1/2.

He was happy as a little sand-boy when he was here for the 2 week school break - I tried to ensure that none of us had gluten, but although my daughter is trying and he is supposed to be gluten-free at school, I do wonder how good they are at implementing it. He often comes out of school in a foul mood, and he is still getting bouts of D.

It didn't help that his father thinks its a load of rubbish and his problems are probably caused by his Mum so he was given Pizza on Sunday and has had D ever since. Arrrghh!

His little brother although not totally gluten-free I think is also very intolerant. Not so much in the stomach line, although he's been getting some D this week, but he will be 5 in August and is still in pull-ups at night. He didn't potty-train until he was at least 3 1/2. My daughter had such a struggle with it - it seems like she's been doing nothing but mopping up poo for the last 7 years!

He has learning delay and is only in the 25th percentile for his age. Connor's test has come back negative/borderline. I mean, you either have it or you don't! These tests drive me mad. But I think it would be a good idea to encourage my family to get the gene panels done, especially if their tests come back negative. As far as I am concerned if you have the genes and you have a reaction to the stuff and are better off it, you are Celiac!

[okgrace]

It must be tough having a father who doesn't understand your basic need for healthfulness. I have heard other people on this site state that it is a form of abuse to knowingly give a child who is intolerant, wheat. I wonder if dad has ever thought about that. Not that a discussion about abuse would make for peace between the parents, but come on, how could any sensible person think a 7 year old would poop his pants purposefully or that it would somehow be the fault of mom. Please! The mom blame game really gets me going. We are all doing the best we can in our lives.

My thoughts are with you I understand how difficult and frustrating this is, especially when your main job in life becomes food police, laundress, and poop cleaner upper. Fortunately, at some point things always seem to improve or aleast their will be different challanges.

[tipnpat]

All this time, I've thought my son was simply not taking time to use the bathroom when he needed to. He always has accidents, "smudges," and near misses and we've talked and talked and talked about "listening to our body" and taking time out from play to use the bathroom. Maybe I'll keep that appointment with the pediatric GI after all. I feel so guilty for all the scolding I've done.