Doctor Says It's Toddler's Diarrhea -- I'm Not Satisfied!

[hypatia7777]

My three-year-old daughter has been having intestinal symptoms since for about 6 weeks. After looking around this website and others, it seems like her symptoms could match up with celiac.

It started out when she got a stomach bug and started having diarrhea. The diarrhea lasted for a long time (maybe 11 days) and then she started having white, floating stools. She also has gone through periods of extreme constipation. She's been having a horrible time sleeping, and she wakes up at night and asking for milk. Oh, and I've been noticing blood on the toilet paper when I wipe her bottom. In the past couple of days, she has had pale yellow stools instead of white ones. Still floating. She has not had actual diarrhea in about a month.

Yesterday we went to the pediatrician who diagnosed toddler's and he diagnosed toddler's diarrhea -- which just makes no sense to me. Toddler's diarrhea is only a diagnosis you should make after you've ruled other options out -- it didn't seem like he even bothered to rule out other options. And she isn't even having diarrhea anymore -- the floating white stools seem like symptoms of something else. So I just feel dissatisfied. I'm not convinced that she necessarily has gluten intolerance, but it seems like she might, and I hate to start feeding her gluten when I don't think we've ruled out the possibility that it will make her sick.

My action plan: I am planning on gong taking her off gluten for awhile and seeing what happens. I also ordered the casein and gluten sensitivities from Enterolab, so we'll see how those turn out.

I have not decided whether to go see a pediatric GI yet. Is there any reason to do that? My main concern that the white stools could be a sign of liver disease or something like that.

My husband is very skeptical about taking my daughter off of gluten because "she doesn't have white stools all the time."

I am also wondering about how to interpret my daughter's waking up in the middle of the night craving milk. Could that be a sign of a casein tolerance? Or a side effect of gluten intolerance?

[rinne]

Hi.

I'm sorry I don't have any answers for you, perhaps a parent will come along that can help with your questions.

I just wanted to say, good for you for trusting yourself. Diarrhea is not normal.

[Mother of Jibril]

Welcome to the group!

Testing for celiac tends to be unreliable in small children, but it's not completely useless. Why not have your daughter tested? The blood test is not too expensive, and if it does come back positive (it could happen) then you'll have a firm diagnosis. Another thing you can do is get a CBC (complete blood count) and a CMP (comprehensive metabolic panel). Many people with celiac have a history of abnormalities like anemia, elevated liver enzymes, etc... not always, but this could give you some reassurance and more information to go on. (Both of these are simple blood tests... very routine).

Ask your pediatrician to run these tests... and if s/he won't, find a new pediatrician! White, floating stools are not normal for anyone at any age. When my son had blood in his diapers the pediatrician tried to tell me he was just "straining" during bowel movements (even though he had diarrhea). On my own, I figured out that he has a severe intolerance to casein. Once I took dairy products out of my diet (since I was breastfeeding) the bleeding stopped. Within six weeks he was completely back to normal.

I agree with rinne... a mom knows her child better than any doctor.

[Amyleigh0007]

Go with your gut instinct. I insisted my son get a round of blood tests at his 8 year check up and I am so glad I did because that's when Celiac and the food allergies came up. Before, his doctor wanted to put him on Mira lax for the constipation and Pediasure for the slow growth!!! Diarrhea is not normal and neither is constipation. It means something is going on. Good luck to you!

[Gemini]

My three-year-old daughter has been having intestinal symptoms since for about 6 weeks. After looking around this website and others, it seems like her symptoms could match up with celiac.

It started out when she got a stomach bug and started having diarrhea. The diarrhea lasted for a long time (maybe 11 days) and then she started having white, floating stools. She also has gone through periods of extreme constipation. She's been having a horrible time sleeping, and she wakes up at night and asking for milk. Oh, and I've been noticing blood on the toilet paper when I wipe her bottom. In the past couple of days, she has had pale yellow stools instead of white ones. Still floating. She has not had actual diarrhea in about a month.

Yesterday we went to the pediatrician who diagnosed toddler's and he diagnosed toddler's diarrhea -- which just makes no sense to me. Toddler's diarrhea is only a diagnosis you should make after you've ruled other options out -- it didn't seem like he even bothered to rule out other options. And she isn't even having diarrhea anymore -- the floating white stools seem like symptoms of something else. So I just feel dissatisfied. I'm not convinced that she necessarily has gluten intolerance, but it seems like she might, and I hate to start feeding her gluten when I don't think we've ruled out the possibility that it will make her sick.

My action plan: I am planning on gong taking her off gluten for awhile and seeing what happens. I also ordered the casein and gluten sensitivities from Enterolab, so we'll see how those turn out.

I have not decided whether to go see a pediatric GI yet. Is there any reason to do that? My main concern that the white stools could be a sign of liver disease or something like that.

My husband is very skeptical about taking my daughter off of gluten because "she doesn't have white stools all the time."

I am also wondering about how to interpret my daughter's waking up in the middle of the night craving milk. Could that be a sign of a casein tolerance? Or a side effect of gluten intolerance?

I have no children but speaking from my own experience......pale, floating stools CAN mean Celiac because I had that symptom for years before dx. Large volume stool that floated and the reason for this is because of fat content. When you don't absorb nutrients, whether all the time or sporadically, you pass fat directly out into your stool. This will result in light color and, well......buoyancy!

As far as I am concerned, a person can learn more from their own body waste than you can by going to a doctor these days. They look at nothing but their own test results. I would suggest finding a good Celiac specialist but a word of warning.....because children very often have little damage to their small intestine, it's very hard to get a diagnosis. If her testing comes back normal, that does not mean she doesn't have Celiac/GS. But the doctor will most likely tell you that so back to square one.

If you do not get answers from testing, I would try a trial diet and see what happens. Also, testing through Enterolab is a viable option, as is gene testing, to see if she carries the pre-disposition.

Toddler's diarrhea?!?! Is that the IBS of children's gastric issues? I can't believe what they tell parents today....what a load of BS. It is NEVER normal to have constant diarrhea and food is most likely the culprit. They just are not good at figuring chronic disease out!

[hypatia7777]

Thanks for all of the reassurance! I wish I had been more assertive yesterday in the doctor's office, and maybe we would already have had some blood tests. I just hadn't heard the term "toddler's diarrhea", and I wasn't really sure what it was. I thought maybe it could encompass more of those symptoms. But then when I got home and read about toddler's diarrhea, I realized it was a bad diagnosis.

I've been needing to switch peditricians, anyway, so I think I will go ahead and try to find a different doctor who is more helpful. I'm hoping to join the local gluten free email list and ask around for a good doctor. And I may also just call this pediatrician back and request more tests. I'm afraid of being thought of as a crazy hypochondriac parent, but I guess I just need to get over that.

I'm a little nervous about starting a gluten-free diet. The good news is that we already eat a lot of whole foods and cook from scratch. But it's still a big change! We have so many routines that this disrupts.

[conviviality]

My three-year-old daughter has been having intestinal symptoms since for about 6 weeks. After looking around this website and others, it seems like her symptoms could match up with celiac.

It started out when she got a stomach bug and started having diarrhea. The diarrhea lasted for a long time (maybe 11 days) and then she started having white, floating stools. She also has gone through periods of extreme constipation. She's been having a horrible time sleeping, and she wakes up at night and asking for milk. Oh, and I've been noticing blood on the toilet paper when I wipe her bottom. In the past couple of days, she has had pale yellow stools instead of white ones. Still floating. She has not had actual diarrhea in about a month.

Yesterday we went to the pediatrician who diagnosed toddler's and he diagnosed toddler's diarrhea -- which just makes no sense to me. Toddler's diarrhea is only a diagnosis you should make after you've ruled other options out -- it didn't seem like he even bothered to rule out other options. And she isn't even having diarrhea anymore -- the floating white stools seem like symptoms of something else. So I just feel dissatisfied. I'm not convinced that she necessarily has gluten intolerance, but it seems like she might, and I hate to start feeding her gluten when I don't think we've ruled out the possibility that it will make her sick.

My action plan: I am planning on gong taking her off gluten for awhile and seeing what happens. I also ordered the casein and gluten sensitivities from Enterolab, so we'll see how those turn out.

I have not decided whether to go see a pediatric GI yet. Is there any reason to do that? My main concern that the white stools could be a sign of liver disease or something like that.

My husband is very skeptical about taking my daughter off of gluten because "she doesn't have white stools all the time."

I am also wondering about how to interpret my daughter's waking up in the middle of the night craving milk. Could that be a sign of a casein tolerance? Or a side effect of gluten intolerance?

Wow--this story really sound familiar.

1. My son starting having problems with a stomach bug too. He had horrible watery diarrhea for 3 weeks straight. It was so acidic and his rash was so horrible that I had him lying on a towel with no diaper because he had open sores that would not heal. He was only 8 months. After that his poop has never been normal. Before the bug, he had perfect stools. He's 2.5 now.

2. If your insurance will pay for blood tests, go for it. However mine and my son's came up negative. However the Enterolab testing proved to be extremely helpful! Make sure you get the fecal fat test as well because that will tell you about absorption levels. I had severe malabsorption whereas my son just showed allergies to gluten, casein, soy and egg. I am improving and my son has grown quite a bit since being off gluten.

3. Do not go to a GI doc unless you have tried everything else or know of one who supports alternative testing. Everything I've read and nutritionists specializing in gluten intolerance have told me that it just isn't helpful for most. A false negative test can be misleading. And who wants to put their child through a biopsy if there is another reliable way to diagnose? If your doc wants to put your child on steroids to stop the loose stools then how will you ever resolve the problem?

4. In my experience, the suspicious stools are not always present. I am having a difficult time figuring out why my son occasionally has a "great" or 'perfect' looking poop. But everything you've described is something I've seen hundreds of times in addition to a lot of other variations. His daycare providers have told me for the last two years "His poop just isn't right and I've changed a lot of diapers--believe me!". So I have done all the testing and tried all kinds of things to "fix" this. Sorry to say its not always cut and dry.

Don't get too discouraged. You are not alone!! Toddler's diarrhea is a load of crap--quite literally!

Hang in there!

[hypatia7777]

Thank you all for your support -- I feel so much better having heard from all of you to trust my intuition. I feel like people in my real life think I'm overreacting -- especially since we have a diagnosis or sorts (yes, toddler's diarhea is just IBS in a toddler).

The way I got to celiac.com was I started typing my daughter's symptoms into Google, and then I found wrongdiagnosis.com. There, when I typed in her symptoms, they ALL came back as matching up with celiac disease. And then I came here, and some of the stories of celiac and symptoms lists sounded eerily like what she has been experiencing. Nightwaking and more.

Because of all of that, my intuition is still strongly telling me to keep pursuing celiac disease, since it still seems to me that celiac disease is a better match for her symptoms than anything else I know of.

Conviviality, I was strongly tempted to get the malabsorption, etc. tests from Enterolab, but I didn't order those -- if the gluten test comes up positive I will.

As for whether to go to a GI, I've been debating that. I'm thinking that other people in my family would take gluten-free more seriously if she had an actual diagnosis. That doesn't seem like a great reason to undergo a lot of medical procedures....

Thank you all for your input. It is such a great thing to have the internet at times like this.

[Fiddle-Faddle]

Find out if there is a celiac support group in your area or in the nearest large city. If you contact them, they most likely maintain a list of doctors who know about celiac (in other words, doctors who know what they're doing, so they'd likely know about alternative diagnoses to celiac as well), AND doctors to avoid (sounds like you've already found one of those).

"Toddler's diarrhea???" No such thing. Healthy children have healthy stools. Period.

I also want to suggest that you delay any further vaccinations until this is resolved. IF she has intestinal issues of any kind (celiac or otherwise), she is at risk for more severe reactions to the vaccines than children who are perfectly healthy. And when you do go back to giving her vaccines (or if--some people choose not to vaccinate at all), it is MUCH better to give one vaccine at a time rather than many together--don't let them give her a whole bunch at once to "catch up!" www.nvic.org is a good place to get further info on vaccines.

While many people do just fine with vaccines, there are an awful lot of us on this board (i.e., with intestinal issues) who have had bad reactions to vaccines (or our kids have, which is even worse).

[Amyleigh0007]

I am one of those parents who has had trouble with vaccinations. My perfectly healthy 17 month old who has never, ever been sick got very ill after her last round of vaccinations. She got the MMR, chicken pox, and flu vaccines all at once. That night her legs were so sore she wouldn't walk and that lasted two days. She ran a fever for the next two weeks. She broke out in a yucky rash. She did not eat or sleep like she used to. I ended up taking her to Urgi-Care and they told me just what I expected them to tell me; she had a reaction to the vaccinations. She is better now but I am keeping a close eye on her for lingering problems. To top it off, the doctor wanted her to get blood draw the next day after her vaccinations to check for the Celiac genes plus food allergies and lead exposure! That is waaaaay to much poking for a toddler!

[shayesmom]

I am one of those parents who has had trouble with vaccinations. My perfectly healthy 17 month old who has never, ever been sick got very ill after her last round of vaccinations. She got the MMR, chicken pox, and flu vaccines all at once. That night her legs were so sore she wouldn't walk and that lasted two days. She ran a fever for the next two weeks. She broke out in a yucky rash. She did not eat or sleep like she used to. I ended up taking her to Urgi-Care and they told me just what I expected them to tell me; she had a reaction to the vaccinations. She is better now but I am keeping a close eye on her for lingering problems. To top it off, the doctor wanted her to get blood draw the next day after her vaccinations to check for the Celiac genes plus food allergies and lead exposure! That is waaaaay to much poking for a toddler!

Wow. WAY too many vaccines in one day. It simply amazes me that the manufacturer of the MMR has on the package insert to never give chicken pox within 6 weeks of MMR and yet the same manufacturer makes a vaccine that is supposedly "safe" if the chicken pox is given in conjunction with MMR. That's just strangely contradictory to me.

To the OP, my dd gets yellow stools whenever she has dairy. Turns out, she's "mildly" allergic. But she does much better with ALL forms of dairy out of her diet. Dairy also causes night waking in our dd. She will either wake up in the middle of the night or get up before 5:30 AM and be ready for the day. She'll also be hyper for about 12 hours after an exposure. We've experienced the "white" stools only once. And that was in conjunction with using Tylenol (don't know if you used that while your child was ill). Tylenol affects liver function and the white stools can be a sign of liver issues (as in something is seriously impairing proper enzyme function). Basically, it can induce a form of temporary hepatitis in children that are sensitive to it. Please be careful with that if the white stools occurred around using it.

I don't believe in "toddler diarrhea" as I think that dx is a bunch of BS (I am not a doctor of course...just my honest and not-so-humble opinion). Press forward with a Celiac panel and food allergy testing. My guess is that you'll find your culprit. And should the tests come back negative....keep in mind that they are not 100% accurate (maybe 60% at best). Follow up with an elimination diet to see if things change.

There are some illnesses which may cause temporary issues with lactose intolerance. And those effects can last for several weeks. So keep track of things. If the symptoms persist, keep bugging the pedi or get a new one. Your child deserves to be as healthy as possible. You are your child's best advocate.

[hypatia7777]

Hi Fiddle Faddle,

Thank you for reaffirming that I should keep looking for what lies beneath this toddler's diarrhea diagnosis.

There is a local gluten-free support group, and I've applied to join their Google Group, but I haven't been accepted yet. I'm hoping to ask around there before I find a new physician. Their website says that there is a local internist who HAS celiac disease, which sounds promising. I am DEFINITELY done with this pediatrician.

As for vaccinations, we don't have to deal with that for two years, but thanks for the heads up. It sounds like you all have had some scary experiences with them! I will make sure to keep that in mind as we cross that bridge. Are celiac kids always immuno-compromised, even when they are doing well on a low-gluten diet?

My daughter was on NO medication when she had her white stools, and they lasted for weeks. It's only just been the past few days that she's had yellower stools.

In addition to eating gluten-free, I really want to work on improving her intestinal flora by feeding her a lot of naturally probiotic foods. Does anyone have any suggestions.

Is this horrible? I keep looking a few of my first-degree relatives who happen to be irritable a lot and thinking, "Hmmm... I wonder if he has celiac disease?"

[roshimaximom]

My son has had white stool off and on for a long time and after some trial and error and pushing on my part we seem to be headed toward celiac diagnosis. I would agree with you that this does NOT sound like "Toddler's Diarrhea" and one thing I've learned in my parenting journey is that your motherly intuitions and observations on this stuff are OFTEN correct and need to be listened to.

Good luck!

Hi Fiddle Faddle,

Thank you for reaffirming that I should keep looking for what lies beneath this toddler's diarrhea diagnosis.

There is a local gluten-free support group, and I've applied to join their Google Group, but I haven't been accepted yet. I'm hoping to ask around there before I find a new physician. Their website says that there is a local internist who HAS celiac disease, which sounds promising. I am DEFINITELY done with this pediatrician.

As for vaccinations, we don't have to deal with that for two years, but thanks for the heads up. It sounds like you all have had some scary experiences with them! I will make sure to keep that in mind as we cross that bridge. Are celiac kids always immuno-compromised, even when they are doing well on a low-gluten diet?

My daughter was on NO medication when she had her white stools, and they lasted for weeks. It's only just been the past few days that she's had yellower stools.

In addition to eating gluten-free, I really want to work on improving her intestinal flora by feeding her a lot of naturally probiotic foods. Does anyone have any suggestions.

Is this horrible? I keep looking a few of my first-degree relatives who happen to be irritable a lot and thinking, "Hmmm... I wonder if he has celiac disease?"

[Canadian Karen]

Toddler's Diarrhea ?????

What the heck is that? Sheesh!

I have four children, never once heard that term..... Sounds like a cop out term to me......

[My3B's]

Actually toddler diarrhea is a real condition caused by too much I believe sorbitol. My oldest had this and we had to remove apple juice and give pear juice instead. There were some other things we had to eliminate too but it was 11 years ago now and I do not exactly remember but the diarrhea was so acidic it would actually scald the skin even if you changed his diaper right away. It was aweful but removing those items solved the problem almost immediately.

As for the original post and the question regarding waking up craving milk. In my research regarding the gluten free diet as a treatment for ADD/ ADHD I came across some literature which was very interesting. It noted the relationship to the way the body breaks down the protein in gluten and casein into peptides referred to as opiodes. In essence they have the same chemical properties as substances like morphine and other opiates. They bind to some of the same chemo-receptors in the brain. It is felt there is a link here regarding ADD and autism. But it would stand to reason why some people say they are "addicted" to carbs or their kids are "addicted" to milk......to some extent they could be. It would be worth doing your own research and perhaps considering eliminating casein (protein in milk) as well as gluten.

Good luck and I hope you find some answers soon

[Fiddle-Faddle]

Actually toddler diarrhea is a real condition caused by too much I believe sorbitol.

They actually call this "toddler diarrhea???"

I'm shocked. That makes it sound like something normal that toddlers just get. I guess the problem is, in our society, it is now "normal" to give toddlers lots of sugary juice drinks. A friend of mine, who is a nutritionist(!!!) (and her husband is a doctor!) was giving her toddler something like 40 ounces of juice a day, and wondering why he had diarrhea.

When did it become the norm?

I suppose most of my kids' friends parents are shocked at me, though--my kids always drink water. Their parents probably think I'm starving the poor things--no bread (unless gluten-free)! no pasta (ditto)! nothing to drink but water!

[My3B's]

Well with my son it was not an excessive amount, he was very sensitive to it and it only took 4 ounces of apple juice and he had it. He couldn't have anything with apples for a while. We switched him to the pear juice and he was fine but never had excessive amounts, he would get a total of 16 ounces if that, he has always preferred water or milk.

Well I was a first time mom and I guess it being a product in the baby aisle by Gerber I assumed it was ok.

My kids presently drink water or milk. None of them have ever had soda and once in a while if they are having friends over I get 100% juice boxes as a treat. I avoided any juices with subsequent kids as I was afraid they would have the same experience and watching 1 kid go through that was enough for me. As it was I felt terrible because the first time it happened I just thought it was a really bad diaper rash but the next time he went right to the pediatrician and she knew exactly what it was and how to prevent it.

I was just pointing out that there is such a thing as toddler diarrhea and it is not just juice but other foods as well, I just cannot remember them all since it seemed the main culprit for us was anything apple. And just because it has the name toddler diarrhea doesn't mean it's considered normal cuz let me tell you I do not know too many moms. or pediatricians, who would think it was normal for an entire layer of skin to be essentially scalded off by acidic bowel movements. Sometimes a simple name is easier to explain to parents with no medical backround. I guess it could be called something like "Sorbitol sensitive hyperacidic gastroenteritis resulting in diarrhea" but toddler diarrhea seems easier to explain. I cannot remember if it was sorbitol or ascorbic acid or sorbeic acid that was the problem but it was something like that found in apples and other foods. The kids seem to outgrow the sensitivity as they get older because he eats apples without a problem but still does not like any kind of juice. There are some kids, however, who do remain sensitive. When I was checking with the school nurse if any other kids were gluten free she mentioned some other dietary restrictions on some of the other kids and this was one of them.

[hypatia7777]

Accidental post

[hypatia7777]

AN UPDATE FROM THE OP:

Well, we got our test results back from EnteroLab and DD's test results said she sensitive to gluten AND casein. We didn't do the whole panel of tests, just the very basic $99 gluten test and $99 casein, so I don't know more than that. I expect we will do further tests and test the whole family soon. Regardless, we're going to have a gluten-free household. I don't want there to be things on the shelf that DD can reach that will make her sick.

Getting the Enterolab testing was such a good thing because it gave us something to back up my intuition. It was what made my husband accept that there was a really problem. Before that, he was going along with the diet, but begrudgingly. Now, he's accepted it as something that's necessary.

I have been thinking about writing a letter to our soon to be ex pediatrician. I would like my letter to be constructive -- to help him consider gluten insensitivity or celiac when a child presents with these symptoms. I'm thinking of writing a letter and attaching some resource written by doctors for doctors about diagnosing celiac disease in children. Has anyone written a letter like that here in the past? Or have you seen a document like that would be helpful.

[MrsPea]

On February 20, 2009 at 6:59 PM, My3B's said:

Actually toddler diarrhea is a real condition caused by too much I believe sorbitol. My oldest had this and we had to remove apple juice and give pear juice instead. There were some other things we had to eliminate too but it was 11 years ago now and I do not exactly remember but the diarrhea was so acidic it would actually scald the skin even if you changed his diaper right away. It was aweful but removing those items solved the problem almost immediately.

 

As for the original post and the question regarding waking up craving milk. In my research regarding the gluten free diet as a treatment for ADD/ ADHD I came across some literature which was very interesting. It noted the relationship to the way the body breaks down the protein in gluten and casein into peptides referred to as opiodes. In essence they have the same chemical properties as substances like morphine and other opiates. They bind to some of the same chemo-receptors in the brain. It is felt there is a link here regarding ADD and autism. But it would stand to reason why some people say they are "addicted" to carbs or their kids are "addicted" to milk......to some extent they could be. It would be worth doing your own research and perhaps considering eliminating casein (protein in milk) as well as gluten.

 

Good luck and I hope you find some answers soon

I know this is an old post, but my 2 year old son has exactly this burning acid poo after excessive juice, or really oily foods. However, there is WAY more sorbitol in pears then in apples! 

My son was also dx with toddler diarrhea and I was told by our GI just because he tested negative to celiac now, doesn't mean he will 6 months from now. Anyways, this lady's post gave me hope for a brief second, until a simple google search of food with sorbitol revealed this post was way off base.