Enigma

   Jacob displayed first signs of sickness in February.  It started with mouth ulcers, and then came diarrhea.  Not just any kind of diarrhea - it was a diarrhea that never stopped.  It would be bad, really really bad, for a day or two.  Then he would have very soft stools for a couple of days.  Then he would get very bad again.  Sometimes, there were days with no stool at all, then there would be 10 exploding diapers the next day.  He never had any diarrhea at night but he would wake up and immediately have an extremely watery poop.  If I wasn't there to catch him when he woke up, I would find him soiled, wet, and very stinky.  He had lots of undigested food in his stool.  He lost weight, then regained it.  On bad days, he would simply sway and fall over, out of a stand.  He was weak, he was grumpy, he changed.

It was scary.

I took him to a doctor here in Yerevan who wanted to put him on antibiotics.  I left and never saw the doctor again. I called doctors in Germany, in the US.  The symptoms just didn't make any sense.  Everybody warned me to take care that he would not dehydrate.  We made him drink, and drink - and we were very pleased to see that dehydration was not a problem. That, in turn, baffled the doctors - kids with diarrhea, especially with chronic diarrhea, do get dehydrated.

I don't know how many hours I spent on the Internet trying to find out what was going on with Jacob.  His symptoms were baffling.  The come-and-go-in-waves-part of the illness was not explained by anything I read.  The ulcers didn't fit. He looked too darn healthy to begin with. And the only thing I came up with that fit all his symptoms was celiac disease.

This came as a shock.  A life-long diet?  A complicated diet in this part of the world?  We decided to give it a try and with the help of some very nice and very helpful celiacs among the US Expat community, we managed to put Jacob on a gluten-free diet.  Within a day or two, he got visibly better.  He had a formed stool for the first time in months.  I was both elated and deeply scared.  I had not wanted Jacob the be a celiac child.  His life would be so hard, and not only now. There would be no beer-and-pizza with his buddies one day - both those items are no-no's for gluten-intolerant people.

So, we stopped the diet and he got worse again, within a day or two.  This seemed to be all the confirmation that was needed.  In order to have his disease medically evaluated, we took him to the Children's and Youth Hospital here in Arapkir.  The hospital may not look like much from the outside -- it is being renovated and expanded at the moment, though -- and the famous doctor we saw didn't even have his own office.  He would wander through the corridors with us trailing behind him, peeking into rooms until he found one unoccupied.

They ran all kinds of tests and came up empty-handed.  No sign of infection.  No parasites.  The test for antibodies to confirm celiac disease came up negative. Nothing.  He's healthy.  He's fine.

But - the diarrhea persisted. We were in constant contact with our health insurance and they finally flew us out to Germany.  Jacob was admitted to the Leopoldina Hospital in Germany, and again, a whole battery of tests was run.  Blood counts, stool cultures.  EEG, ultrasound.  Neurological evaluation.  Nothing.  Slightly anemic but not to the point where it was worrisome. The celiac test? Negative, again.  Food allergies? Nada. But, I said, the gluten-free diet brought a change, within a day or two!  No, they said, that's not possible.  It takes at least a week for a gluten-free diet to have effect on a celiac.  He's fine.  Don't be hysterical, relax.  He's fine.

Only, he wasn't.  After a brief sojourn, he had another bad attack the week after we left the hospital.  Then again two weeks later.  In the US, we had one exploding diaper after the next.  We returned to Yerevan in late August, worried and upset.

Finally, we took a photo of Jacob's ulcers, sent it to the health insurance, and they reacted fast.  They knew what kind of doctor they wanted for us.  And then they found a gastroenterologist for us, at the University Hospital in Frankfurt, Germany.  We were cleared to leave, about to start packing...

... and I did a last Google-search,  "chronic watery diarrhea in toddlers"...

... and I found an article on Chronic Diarrhea by Dr. Jon A. Vanderhoof in the journal Pediatrics in Review*.  He distinguishes chronic diarrhea by age onset, and this is the section about the toddler age:

Chronic Diarrhea in the Toddler

The differential diagnosis of chronic diarrhea changes during the latter part of the first year of life and into the second year. The most common cause of chronic diarrhea in this age group is irritable colon of infancy, also known as chronic nonspecific diarrhea.
This disorder is believed to be a variant of irritable bowel syndrome. It is not uncommon to find a family history of irritable bowel in parents or siblings. 

Patients who have this disorder typically exhibit intermittent loose, watery stools. The presentation can vary from two to three mushy stools on one day to five to ten watery stools on other days. The intermittent nature of the diarrhea often is helpful in making the diagnosis. Stools usually are not expelled at night, although it is not uncommon to have a very watery stool immediately upon awakening in the morning.  These children manifest normal growth if they are not placed on hypocaloric diets in an attempt to control the diarrhea.  Because of the intermittent nature of the diarrhea, they often are misdiagnosed as having food allergies or recurrent episodes of viral enteritis. The assumption of food allergy is strengthened in the minds of the parents by the common presence of vegetable or other food particles in the stool, which are simply a manifestation of rapid transit. 

The mechanism for diarrhea in this disorder appears to be altered gastrointestinal motility. Despite relatively rapid transit, absorption is intact and the child will grow well if fed adequately.  Institution of a high-fat, low-carbohydrate diet is often helpful because of reduced dietary osmolality and the effect of ileal fat reducing intestinal motility. When fat reaches the ileum, secretion of gastrointestinal hormones, primarily peptide YY, slows gastric emptying and small intestinal transit, thereby providing some improvement in the child's diarrhea. We usually tell parents to encourage ingestion of meats, vegetables, butter, gravy, and whole milk and eliminate all simple sugars, especially sucrose and juices. Addition of fiber in the form psyllium mixed with applesauce also may aid in improvement. [Emphasis mine.]

Dr. Jon A. Vanderhoof, MD, Pediatrics in Review, 19 (12): 418. (1998)

That was it. As clear and as simple as that.  I did more googling, now that I knew the name of the beast.  It sounded, as my doctor friend Natalie put it, as if Jacob had read the article, so perfect was his presentation of all the symptoms.  True, it did not explain or address the ulcers.  But all the rest was there.

But here's the thing: We read this, and decided to try the high-fat, low-carbohydrate diet for one month.  And today, only 24 hours after we changed his diet, he had two semi-solid poops.  No more diarrhea.  Just like that.  And his ulcers are gone. Just like that.

We are holding our breath.  The visit in the clinic in Germany is postponed, not canceled. We can't quite yet believe that it may be so simple.  But so far, so good.

Apparently, Toddler's Diarrhea is fairly common.  It is often connected with high levels of fruit juice intake - which is not the case with Jacob, me not being a fruit juice fan (you want fruit? then eat a fruit!).  It resolves itself, as spontaneously as it comes - most kids are over the diarrhea by the time they are four.  We could live with that.

But why did none of his doctors spot this?  Again, taken from another site, the typical symptoms are:

1. Age between 6-30 months. Most are better by 4 years of age.
2. 2-6 watery stools per day. There can be periods of days without stools. Many stools contain undigested material and may drip down the child's leg from the diaper.
3. Normal weight, height, and head circumference growth curves without falling off.
4. No evidence of infection.
5. Stools are hematest negative.
6. The child looks well and there is no evidence of malnutrition and no history of abdominal pain.
7. Growth may be compromised if the diet manipulations that have been tried to control the diarrhea have not been enough calories.
8. There is often a history of colic, gastroesophogeal reflux, and family history of irritable bowel syndrome.

He had all of those symptoms.  He - and his brother - all had bad colic. One would think that pediatric gastroenterologists - or pediatric doctors in general - would know about this.  The fact that the gluten-free diet had an effect within a day should have made them wonder about fast digestion.  It didn't.  What is there to say?

Thank you all for thinking of Jacob, and wishing him well.  Thanks for all the help, in all the plenty forms we've received it.  We came out the other end a bit ruffled, but none the worse for wear.  We're just glad we've arrived and we are hoping that all will be well. We'll let you know in a month.

*In case you're wondering:  Many medical articles are free to view and read when your ISP is in a developing country.  Lucky us!

I took him to a doctor here in Yerevan who wanted to put him on antibiotics.  I left and never saw the doctor again. I called doctors in Germany, in the US.  The symptoms just didn't make any sense.  Everybody warned me to take care that he would not dehydrate.  We made him drink, and drink - and we were very pleased to see that dehydration was not a problem. That, in turn, baffled the doctors - kids with diarrhea, especially with chronic diarrhea, do get dehydrated.

I don't know how many hours I spent on the Internet trying to find out what was going on with Jacob.  His symptoms were baffling.  The come-and-go-in-waves-part of the illness was not explained by anything I read.  The ulcers didn't fit. He looked too darn healthy to begin with. And the only thing I came up with that fit all his symptoms was celiac disease.

This came as a shock.  A life-long diet?  A complicated diet in this part of the world?  We decided to give it a try and with the help of some very nice and very helpful celiacs among the US Expat community, we managed to put Jacob on a gluten-free diet.  Within a day or two, he got visibly better.  He had a formed stool for the first time in months.  I was both elated and deeply scared.  I had not wanted Jacob the be a celiac child.  His life would be so hard, and not only now. There would be no beer-and-pizza with his buddies one day - both those items are no-no's for gluten-intolerant people.

So, we stopped the diet and he got worse again, within a day or two.  This seemed to be all the confirmation that was needed.  In order to have his disease medically evaluated, we took him to the Children's and Youth Hospital here in Arapkir.  The hospital may not look like much from the outside -- it is being renovated and expanded at the moment, though -- and the famous doctor we saw didn't even have his own office.  He would wander through the corridors with us trailing behind him, peeking into rooms until he found one unoccupied.

They ran all kinds of tests and came up empty-handed.  No sign of infection.  No parasites.  The test for antibodies to confirm celiac disease came up negative. Nothing.  He's healthy.  He's fine.

But - the diarrhea persisted. We were in constant contact with our health insurance and they finally flew us out to Germany.  Jacob was admitted to the Leopoldina Hospital in Germany, and again, a whole battery of tests was run.  Blood counts, stool cultures.  EEG, ultrasound.  Neurological evaluation.  Nothing.  Slightly anemic but not to the point where it was worrisome. The celiac test? Negative, again.  Food allergies? Nada. But, I said, the gluten-free diet brought a change, within a day or two!  No, they said, that's not possible.  It takes at least a week for a gluten-free diet to have effect on a celiac.  He's fine.  Don't be hysterical, relax.  He's fine.

Only, he wasn't.  After a brief sojourn, he had another bad attack the week after we left the hospital.  Then again two weeks later.  In the US, we had one exploding diaper after the next.  We returned to Yerevan in late August, worried and upset.

Finally, we took a photo of Jacob's ulcers, sent it to the health insurance, and they reacted fast.  They knew what kind of doctor they wanted for us.  And then they found a gastroenterologist for us, at the University Hospital in Frankfurt, Germany.  We were cleared to leave, about to start packing...

... and I did a last Google-search,  "chronic watery diarrhea in toddlers"...

... and I found an article on Chronic Diarrhea by Dr. Jon A. Vanderhoof in the journal Pediatrics in Review*.  He distinguishes chronic diarrhea by age onset, and this is the section about the toddler age:

Chronic Diarrhea in the Toddler

The differential diagnosis of chronic diarrhea changes during the latter part of the first year of life and into the second year. The most common cause of chronic diarrhea in this age group is irritable colon of infancy, also known as chronic nonspecific diarrhea.
This disorder is believed to be a variant of irritable bowel syndrome. It is not uncommon to find a family history of irritable bowel in parents or siblings. 

Patients who have this disorder typically exhibit intermittent loose, watery stools. The presentation can vary from two to three mushy stools on one day to five to ten watery stools on other days. The intermittent nature of the diarrhea often is helpful in making the diagnosis. Stools usually are not expelled at night, although it is not uncommon to have a very watery stool immediately upon awakening in the morning.  These children manifest normal growth if they are not placed on hypocaloric diets in an attempt to control the diarrhea.  Because of the intermittent nature of the diarrhea, they often are misdiagnosed as having food allergies or recurrent episodes of viral enteritis. The assumption of food allergy is strengthened in the minds of the parents by the common presence of vegetable or other food particles in the stool, which are simply a manifestation of rapid transit. 

The mechanism for diarrhea in this disorder appears to be altered gastrointestinal motility. Despite relatively rapid transit, absorption is intact and the child will grow well if fed adequately.  Institution of a high-fat, low-carbohydrate diet is often helpful because of reduced dietary osmolality and the effect of ileal fat reducing intestinal motility. When fat reaches the ileum, secretion of gastrointestinal hormones, primarily peptide YY, slows gastric emptying and small intestinal transit, thereby providing some improvement in the child's diarrhea. We usually tell parents to encourage ingestion of meats, vegetables, butter, gravy, and whole milk and eliminate all simple sugars, especially sucrose and juices. Addition of fiber in the form psyllium mixed with applesauce also may aid in improvement. [Emphasis mine.]

Dr. Jon A. Vanderhoof, MD, Pediatrics in Review, 19 (12): 418. (1998)

That was it. As clear and as simple as that.  I did more googling, now that I knew the name of the beast.  It sounded, as my doctor friend Natalie put it, as if Jacob had read the article, so perfect was his presentation of all the symptoms.  True, it did not explain or address the ulcers.  But all the rest was there.

But here's the thing: We read this, and decided to try the high-fat, low-carbohydrate diet for one month.  And today, only 24 hours after we changed his diet, he had two semi-solid poops.  No more diarrhea.  Just like that.  And his ulcers are gone. Just like that.

We are holding our breath.  The visit in the clinic in Germany is postponed, not canceled. We can't quite yet believe that it may be so simple.  But so far, so good.

Apparently, Toddler's Diarrhea is fairly common.  It is often connected with high levels of fruit juice intake - which is not the case with Jacob, me not being a fruit juice fan (you want fruit? then eat a fruit!).  It resolves itself, as spontaneously as it comes - most kids are over the diarrhea by the time they are four.  We could live with that.

But why did none of his doctors spot this?  Again, taken from another site, the typical symptoms are:

1. Age between 6-30 months. Most are better by 4 years of age.
2. 2-6 watery stools per day. There can be periods of days without stools. Many stools contain undigested material and may drip down the child's leg from the diaper.
3. Normal weight, height, and head circumference growth curves without falling off.
4. No evidence of infection.
5. Stools are hematest negative.
6. The child looks well and there is no evidence of malnutrition and no history of abdominal pain.
7. Growth may be compromised if the diet manipulations that have been tried to control the diarrhea have not been enough calories.
8. There is often a history of colic, gastroesophogeal reflux, and family history of irritable bowel syndrome.

He had all of those symptoms.  He - and his brother - all had bad colic. One would think that pediatric gastroenterologists - or pediatric doctors in general - would know about this.  The fact that the gluten-free diet had an effect within a day should have made them wonder about fast digestion.  It didn't.  What is there to say?

Thank you all for thinking of Jacob, and wishing him well.  Thanks for all the help, in all the plenty forms we've received it.  We came out the other end a bit ruffled, but none the worse for wear.  We're just glad we've arrived and we are hoping that all will be well. We'll let you know in a month.

*In case you're wondering:  Many medical articles are free to view and read when your ISP is in a developing country.  Lucky us!

Comments

[Bernard Guerrero]

Glad to hear it looks minor! Good luck, and I hope the ulcers stay away.

[Michael]

Fingers crossed.

Why didn't they identify it? Welcome to the wonderful world of medicine.

I'm pretty sure that the answer is very simple. Dietary changes are nigh impossible to study in a clinical setting because you can't get people to record what they're actually eating (and they lie, to themselves and to you). Anything without plenty of clinical studies will never be trusted by practicing physicians -- too risky. So practicing physicians very rarely have any idea about the effects of diet, and that *includes* the gastroenterologists, at least in our experience.

[Kit]

Thank God.

On the other hand, I see around the same thing happening:doctors being seconded (or even replaced, in your case) by Google.

[Michael M.]

Kudos to you Claudia for putting so much work into this and arriving at the answer. And here's hoping Jacob is back in perfect fighting condition soon.

[Randy McDonald]

I'm glad it has worked out.

[Christian]

Your entries about your son were fascinating to me, especially this one. I am happy to know that he is doing much better.

[Cirque Du Bebe]

Hi, we just did a google search for patchy tongues because my 3 yr old son has one of and on and ALSO loose watery stools since I can remember. So glad I found this site and especially glad for the news that it is normal.