Question About Potty Training And Possible Celiac Stools

[Chako]

I am sorry to ask so many questions but I am wondering about a particularly nasty aspect of what my son is going through. Since he was about 23 months old he developed a horrid diarrhea and we saw poop for days on end, sometimes 10 to 15 lovelies that would seriously drive you from the room, sometimes from the house. We ended up with an idiot GI who treated him as a stool holder for 15 months (I have ditched him and we are now with a new GI and currently undergoing tests and expecting scopes on Sept 11). In the last year we have seen stools go from many a day to one or two every day, none for a few then multiple blowouts again. Right now we are at a one a day doozie and we are trying so very hard to get him to go to the toilet for them. Sometimes he makes it, sort of, often he does not. The stools are FULL of mucous, lots of them and they are lumpy and mushy to boot. We have seen all colours of the rainbow in his stools and right now they are dark with a bit of green in them. It can literally change in a few hours or from day to day but these last 2 weeks every last stool has mucous strands and lots of them in it. My husband and I differ on whether or not he can actually MAKE it to the toilet with them. I think an adult might have a hard time of it based on what I see. I know I would probably be going to the doctor if I had a stool like that but my DH thinks that he is being stubborn. We are being very encouraging with him and positive but still he says he can not make it and this has been a constistent problem. Our last GI said in one breath he likely could not feel when he had to go and in the next said he knows and must be bribed to go. I literally have tried everything but no success. This is my middle son and I have successfully trained my eldest to go potty so I know I am not starting from scratch.

We have him on a fairly restricted diet as he is currently seemingly reacting to everything under the sun including corn, and soy and he is off peanuts and treenuts and milk due to a registered RAST allergy to them. Yes, he is still on gluten pending tests I guess but we are discussing that.

Anyone else out there with such a problem? Or am I blaming a behaviour problem on this?

[Becky6]

My daughter was the same way and she would have bad accidents. My husband thought she just didn't pay attention and didn't get there fast enough. Well, there was no way! They were so bad they would run down her legs! We went from 10 a day to 3 after going dairy free. Then once she was gluten-free she has fully formed stools now! And she got potty trained very quickly after that! I am sure with what you describe he does not have enough warning to make it. My daughter (3 at the time) would say I am sorry it just came out. Good luck!

[Ursa Major]

It sounds to me like your son can't possibly make it to the toilet (or potty) on time. My advice is to put training pants on him and to stop trying to pressure him. Heck, I didn't make it to the toilet on time the other day, because I had eaten something I shouldn't have! How much less likely would it be for a small child to make it in a similar situation.

Once he is off gluten, I bet he'll be toilet trained in a flash. Are you sure you really want to wait until September for a biopsy? The poor little guy must find not being able to please you by doing his bowel movements in the toilet more consistently pretty upsetting.

[Chako]

The really hard part about being on a board is that there is a stall between communication and as there is no intonation of voice or eye contact, etc. it is so hard sometimes to get a feel for a person when they post. I do not want you to think for an instant that we are being really hard on him for this as we are not. We are both being very supportive and trying our best with this and it IS a normal routine now, we just wish it was not. Our ex-idiot GI had us trying to bribe him and that did not wash so we did not pursue it at all. We know he is a very intelligent little fellow and we also know he is exceptionally fretful (and we have wondered where on earth this has come from), not like his brothers at all so we try to tailor things to be very encouraging for him. He just shines when he does well and it has been so very hard for us to hear for so long that he is stool holding and that is that when we really do know differently. Dh is very easy going and it was just a topic that came up again recently as not one is making it to the toilet again this last while, not even to the bathroom. It is right down his legs and sometimes defies gravity and makes it up his back as well. It is much, much worse when he is reacting to a trigger like milk or soy, if that is possible.

We did have him in pullups for daycare and for school (he is in JK) and the school said NO. I went so far to get a GI note saying he was being treated and that they were necessary. The school was LESS than supportive. Between his blowing out and vomiting (due to reflux) I pulled him in December as he did not need the stress anymore and they were treating him differently so I did not want him to feel bad about the blowouts and vowed we would get to the bottom of it all. So my ped arranged a new GI for us (a little under 4 months wait which for Canada is GREAT), we went on the multiple elimination diet and found he blows out only a few times a day on it rather than up to 10 times a day, and we have better GERD management for him (he was 3.5 years old when FINALLY diagnosed with reflux after so many years of puking and me going nuts for an answer).

Since the school insisted he was ADHD I fought it and had him screened by a psychiatrist who found him to be a delightfully intelligent 4 year old without any signs of ADHD. He does however have behaviour issues as they relate to pain and thus his intestional issues need to be addressed. He has returned to school last month and really it is MUCH better now that I have him on this diet, have the assessment to say leave him alone for ADHD, and a note from the ped saying he is being treated for his GI issues. It has astounded me how many hoops I have had to jump through to get to where we are today. It seems everyone is ready to jump at an easy fix (as in he is a stool holder, ADHD, etc.) and yet we know this not to be true. The length of time to get him tested and to a good GI has boggled my mind, but often that is the way it is in Canada. If he were failure to thrive or stalled for more than the one year he did then maybe we would have been in sooner, who knows. I am a very proactive Mother now due to the length of time it took to get my youngest diagnosed and the stress involved with that so rest assured we will get to the bottom of this too! And I am thinking we are unfortunately on track with celiac.

I do not want him to go another minute like this, let alone another 3 months. I have been tossing around the idea of going gluten free for a few weeks and then returning to it for the scopes just to see what happens for him. It is so hard to know what to do but I really do want to see if we can get information from the scopes. A diagnosis of IBS or such will not help out with dealing with the school at all, nor will it help for us to figure out long term what to do for him.

This board has been a great help so far and I really do appreciate that. It was just a question to see if anyone else has had the same problems in pottying (he goes pee consistently and has since he trained for that always) so I could have another piece of the puzzle.

[Ursa Major]

I read through my post again, and realize that it sounds like I might be implying that maybe you are hard on your son for not making it to the toilet. I didn't know, just wanted to make sure (as you said, it's impossible to 'hear' how you say things over the Internet).

It's very frustrating when you constantly have to advocate for your child, because of rigid thinking on teacher's and principal's part. I've had the 'running with my head against a wall' thing (for other issues) with some of my kids as well, and it's maddening.

I am glad that things are working out a little better this time around with the school.

Good for you not to believe he has ADHD!

Please check your PMs, I sent you one last night.

[TCA]

Your son sounds sooooooo much like mine. He was having D so bad so many times a day. I would get him cleaned up and then he'd go again. His little bottom just had a bloody diaper rash and I tried to take very good care of it. I did everything I knew to do and then some and nothing worked to get him to go potty. he would urinate, but not poop. In Jan we started the diet. Within 3 weeks hid D stopped and in another week he was completely potty trained. If he ever get glutned accidentally, the D comes back and he can't get to the potty again. We just go back to pull ups until he gets over it.

Your son sounds so much like he has celiac. I hate for him to go on until Sept. It must break your heart. If it's any encouragement for the diet trial, My son's test were negative for biopsy and inconclusive in his bloodwork. We did the diet trial and the result is amazing. I would encourage it. If he doesn't get better, you can put him back on gluten in time for the test since it's in Sept. We saw some results immediately, like in his behavior, and the D stopped after 3 weeks. He also started growing so fast. It was a miracle to watch.

Did I understand you have another child with celiac?

Good luck!

[ravenwoodglass]

The really hard part about being on a board is that there is a stall between communication and as there is no intonation of voice or eye contact, etc. it is so hard sometimes to get a feel for a person when they post. I do not want you to think for an instant that we are being really hard on him for this as we are not. We are both being very supportive and trying our best with this and it IS a normal routine now, we just wish it was not. Our ex-idiot GI had us trying to bribe him and that did not wash so we did not pursue it at all. We know he is a very intelligent little fellow and we also know he is exceptionally fretful (and we have wondered where on earth this has come from), not like his brothers at all so we try to tailor things to be very encouraging for him. He just shines when he does well and it has been so very hard for us to hear for so long that he is stool holding and that is that when we really do know differently. Dh is very easy going and it was just a topic that came up again recently as not one is making it to the toilet again this last while, not even to the bathroom. It is right down his legs and sometimes defies gravity and makes it up his back as well. It is much, much worse when he is reacting to a trigger like milk or soy, if that is possible.

We did have him in pullups for daycare and for school (he is in JK) and the school said NO. I went so far to get a GI note saying he was being treated and that they were necessary. The school was LESS than supportive. Between his blowing out and vomiting (due to reflux) I pulled him in December as he did not need the stress anymore and they were treating him differently so I did not want him to feel bad about the blowouts and vowed we would get to the bottom of it all. So my ped arranged a new GI for us (a little under 4 months wait which for Canada is GREAT), we went on the multiple elimination diet and found he blows out only a few times a day on it rather than up to 10 times a day, and we have better GERD management for him (he was 3.5 years old when FINALLY diagnosed with reflux after so many years of puking and me going nuts for an answer).

Since the school insisted he was ADHD I fought it and had him screened by a psychiatrist who found him to be a delightfully intelligent 4 year old without any signs of ADHD. He does however have behaviour issues as they relate to pain and thus his intestional issues need to be addressed. He has returned to school last month and really it is MUCH better now that I have him on this diet, have the assessment to say leave him alone for ADHD, and a note from the ped saying he is being treated for his GI issues. It has astounded me how many hoops I have had to jump through to get to where we are today. It seems everyone is ready to jump at an easy fix (as in he is a stool holder, ADHD, etc.) and yet we know this not to be true. The length of time to get him tested and to a good GI has boggled my mind, but often that is the way it is in Canada. If he were failure to thrive or stalled for more than the one year he did then maybe we would have been in sooner, who knows. I am a very proactive Mother now due to the length of time it took to get my youngest diagnosed and the stress involved with that so rest assured we will get to the bottom of this too! And I am thinking we are unfortunately on track with celiac.

I do not want him to go another minute like this, let alone another 3 months. I have been tossing around the idea of going gluten free for a few weeks and then returning to it for the scopes just to see what happens for him. It is so hard to know what to do but I really do want to see if we can get information from the scopes. A diagnosis of IBS or such will not help out with dealing with the school at all, nor will it help for us to figure out long term what to do for him.

This board has been a great help so far and I really do appreciate that. It was just a question to see if anyone else has had the same problems in pottying (he goes pee consistently and has since he trained for that always) so I could have another piece of the puzzle.

What I would do for the little guy is get him on the diet today. You may see such an obvious difference that you decide not to put him through the trauma of the procedures.

[VydorScope]

I do not want him to go another minute like this, let alone another 3 months. I have been tossing around the idea of going gluten free for a few weeks and then returning to it for the scopes just to see what happens for him

Dont. It is all or nothing, you can not do both. Either try the diet now and forget the scope, or suffer all the way to Step 11. The diet WILL effect the results.

I did not see if you mentioned you tried the simple blood tests?

I am NOT a doctor, I am only a parent that has been there...

Let me run through this with you...

Say you try the diet today, and in a couple of weeks all his symptons are improving. Okay, well now you know with out a doubt that gluten is bad for him, and you keep him gluten free, for life. Simple, effective and accurate way to test.

OR

You keep him suffering all the way to Step 11, doing more and more damage to his body and do the bisopy. It has TWO possible out comes...

It could come back POSTIVE. If so you have a confirmed celiac disease and he has to be gluten-free for life. No addtional information is yeilded over the same thing you would have learned doing the diet months ago, just now you have several more months of damage done.

It could come back NON-POSTIVE (doc will call it negative, but that is not correct terminology). This deos NOT rule out celiac disease. It just means in the exact tiny place(s) they looked there was no sign of damage. A good doc at this stage will say "well try the diet and see how it goes". So at this point you waited all this time, and gained NO INFORMATION.

So let me ask you, why go through all that? My suggstion is get the blood test ASAP, then try the diet. The bisopy will hopefully be phased out soon as it is a very poor out dated diagnostic tool for celiac disease.

Thats just my take, and what I wish someone had told me when my son was being tested.....

[Smunkeemom]

seperating the potty training from everything else....

the kid can either make it to the potty or he can't, and if he can't, well, he just can't. Slap some training pants on the kid and relax. Nobody goes to highschool in diapers (unless they are really sick, in which case you wouldn't expect anything less than diapers) so chill out, let the kid figure it out, if he has a success celebrate, if he has an accident clean him up.

(just my own parenting style though, live and let live)

medically, if it were my kid, I would forget about the biopsy and put him on the diet, having D isn't fun, and it isn't healthy. If the diet works and he isn't sick anymore he will be able to make it to the potty, it's worth a shot. I wouldn't want to have D until September, I would much rather eat a little differently and see what happens. Put yourself in your kids' shoes, how would you want to proceed?

[Becky6]

I also wanted to add that my daughter who was 3 was close to being dx'd ADHD. It is all gone now! None of those symptoms at all. I was dx'd with ADHD at 18 and all of my symptoms are gone now that I am gluten-free. I never had my caughter do the biopsy as I didn't want her to suffer any longer.

[Chako]

I read through my post again, and realize that it sounds like I might be implying that maybe you are hard on your son for not making it to the toilet. I didn't know, just wanted to make sure (as you said, it's impossible to 'hear' how you say things over the Internet).

It's very frustrating when you constantly have to advocate for your child, because of rigid thinking on teacher's and principal's part. I've had the 'running with my head against a wall' thing (for other issues) with some of my kids as well, and it's maddening.

I am glad that things are working out a little better this time around with the school.

Good for you not to believe he has ADHD!

Please check your PMs, I sent you one last night.

Thank you for the pm Ursula, I got it. I have to tell you that I have read quite a few of your posts and have found you to be very knowledgeable and supportive. It must be frustrating on your end to see a newbie come on with what you see as obvious no brainer questions which you have many answers for and to know a child is suffering. In the short time I have been here I have learned SO much and I thank everyone here for that. We have taken 2.5 years to get here and that is mind numbing. It took until he was 3 to find out about the reflux, how pathetic is that? I asked more than once for them to show me where a 3 year old child still has "colic"! It came down to his having a good height and a good weight and as long as they are on the charts all is good. I hate charts now.

TCA, no I do not knowingly have any children with celiac. My youngest son was so chronically ill with GERD that he did not start solids (100% food and texture averted) until he was 14 months old and started on meds. then he started stage one purees and at 28 months of age he is now a good weight FINALLY up to 50% ( born at 95 % and was way under and FTT after crossing all major percentile markers by the time he was 13 months ) but still being supplemented. If anyone needs GERD information and dealing with non-eaters I am unfortunately well versed with this.

My DH and I have talked about this rather extensively the last few days. I am the researcher of the family and he agrees that there is so much of Curran that shows celiac. I have it on my side (albeit removed to my Aunts and distant cousins) and on my Dh's side there is diverticulosis (his Dad and Grandfather). This is the second look I have had at celiac but the last time the ex-idiot GI we had followed for 15 months had me convinced he was not a candidate as he was a good height and weight (always slim or skinny though, never an ounce of fat on this kid in his life) so as "all celiacs are short in stature and starving" I got away from looking at this as a possibility. Basically, I wasted 15 months with this moron (sorry, I am SO MAD about this) and treated Curran as a stool holder.

Curran underwent a good round of blood testing on May 19th. It includes:

Glur ®, Alb, Im G, A, M, Caro, Vit B12, Vit E, celiac screen, TTG, CRP, CBCD, ESR, PT, INR, PTT, FB, COA GSC.

This is his second celiac test as just as all the stool ugliness started at the age of 2 he was tested and it was negative. I was led to believe it was absolute and obviously know better now. As I am now a paranoid freak I am tracking EVERYTHING he is tested for and determined to link things together since it takes 4 doctors to solve ONE problem these days it seems.

My youngest son was scoped at the age of 15 months. It found blood in his stomach leftover from esophagitis. Otherwise I wondered why on earth we had him scoped but it was good to know the meds were working since we had such a fight to get him to eat still. It took a lot of time and patience.

Vydorscope has stated almost exactly what I think. I keep coming back to how long he has suffered and I think we may have touched on gluten as a culprit back in January when we began an elimination diet and Curran was off gluten for about 8 to 10 days. We actually remember seeing a single stool back then that almost seemed normal. How pathetic is it that that was probably the last time he made it to the toilet and that his parents were standing over the bowel admiring what was produced?! It seriously was the most normal thing to come out of him so this all does make sense to me when I think back to that and Bill agrees.

We are going to do the gluten free diet. ALL family members (but it will be hard with my littlest one as he is still so prone to reverting back to non-eating status but we are going to give it a go) and try to prevent any contamination. I NEED TO KNOW if this is the answer. I will call the GI office and let them know but really if he has been celiac for this long (2.5 years of diarrhea and unspeakable pain) then the damage will be there I think. The bloodwork is in already so we are not going to skew those results. About the only thing that can change this is if they tell me they will scope him much sooner, like within a couple of weeks and I highly doubt that will happen. We will have to take one day at a time and make a decision after we do the diet. Admittedly I wonder how on earth I could put him back on a diet which may be causing his pain and permanent damage. I will cross that bridge when we come to it.

Interesting to know that other kids here were labelled ADHD as well. We ruled that out and pretty fast. I do not like it when they are so fast to label. He literally gets blinded with the pain at times and that has been a problem, but total removal of dairy, milk, soy and corn has made it better for now.

So expect me to pick your brains for this. I called a couple of places today and all I got from one place was that I did not need that, all I needed was a good homeopath and not gluten free items nor reflux meds. Hmm... I will be looking elsewhere for stuff I think!

[TCA]

I do hope you find the answers you're looking for. The diet trial was all we needed, I wish I had know that 2 years ago! Keep us posted with the progress.