Ultra Frustrated

[SCookie]

Thanks to everyone who replied to my previous query here.

As I mentioned in my other post, my son had a negative anti tTG and normal total IgA. I'm not convinced one way or the other at this point.

Gastro doc effectively dismissed us. (Some kids are tiny. I am feeding him food that is 'too healthy' which is why he has diarrhea)

Anyway, the diarrhea continues and my son has less and less appetite. (I do not think we should have to be running to the porta potty at the park multiple times or having this happen multiple times a week!)

My questions at this point are:

1. we had a point at age 2 where my son was alarmingly thin and had some tests run. Nothing turned up. He actually recovered some growth over time and between 3 and 4 was above the 10th percentile for height and weight. . He had little diarrhea and I began to accept that he may just be small. Now as you can see, here we are at 5....with a return of diarrhea as I mentioned above (for 6 months like this!!), plus a growth drop (height is still within normal range 16th % but weight is down to 5th - an actual weight loss since last summer - and BMI is down to below the 5th from 67th at age 3.5), plus increasing appetite loss. So, does this improvement between 2 and 4 mean anything? Does this 'better' period tend to point away from something like celiac? Can symptoms kind of come and go over time?

2. this explosive diarrhea. This is making me crazy. I have kept a detailed food diary and simply cannot connect it to any particular trigger. We tried eliminating milk but that doesn't seem to be it. I even tried feeding him the identical foods that he ate on a day where he had awful problems on another day and he had no issue. I am completely and utterly baffled. What if anything do you make of this?

We still have another two appointments, one with nutrition and one with ped. and I plan to ask about trying an elimination diet. (Have been reluctant because honestly if I can get him to eat anything I feel like i have to go with it at this point.)

your thoughts on my questions appreciated!

[Bubba's Mom]

It could also be an intollerance to soy or fructose? Both are in so many foods! Keeping a food diary is a good idea, but remember that there isn't always an immediate reaction to a food. Sometimes the reaction comes the next day or so. He could also be getting a bit of gluten through cc from others in the household?

He could also have gluten intollerance which won't show up on blood tests, or he could be part of the group that tests in the normal range. I am one of those, so it does happen.

Unfortunately, we have to do our own detective work. I hope you can get some answers.

[Gemini]

Thanks to everyone who replied to my previous query here.

As I mentioned in my other post, my son had a negative anti tTG and normal total IgA. I'm not convinced one way or the other at this point.

Gastro doc effectively dismissed us. (Some kids are tiny. I am feeding him food that is 'too healthy' which is why he has diarrhea)

Anyway, the diarrhea continues and my son has less and less appetite. (I do not think we should have to be running to the porta potty at the park multiple times or having this happen multiple times a week!)

My questions at this point are:

1. we had a point at age 2 where my son was alarmingly thin and had some tests run. Nothing turned up. He actually recovered some growth over time and between 3 and 4 was above the 10th percentile for height and weight. . He had little diarrhea and I began to accept that he may just be small. Now as you can see, here we are at 5....with a return of diarrhea as I mentioned above (for 6 months like this!!), plus a growth drop (height is still within normal range 16th % but weight is down to 5th - an actual weight loss since last summer - and BMI is down to below the 5th from 67th at age 3.5), plus increasing appetite loss. So, does this improvement between 2 and 4 mean anything? Does this 'better' period tend to point away from something like celiac? Can symptoms kind of come and go over time?

2. this explosive diarrhea. This is making me crazy. I have kept a detailed food diary and simply cannot connect it to any particular trigger. We tried eliminating milk but that doesn't seem to be it. I even tried feeding him the identical foods that he ate on a day where he had awful problems on another day and he had no issue. I am completely and utterly baffled. What if anything do you make of this?

We still have another two appointments, one with nutrition and one with ped. and I plan to ask about trying an elimination diet. (Have been reluctant because honestly if I can get him to eat anything I feel like i have to go with it at this point.)

your thoughts on my questions appreciated!

Two things caught my attention....the dismissive attitude of the GI doc, although all too common, was astounding. You are feeding him too healthy and that's why he has diarrhea?!?!?

The second was the term "explosive" diarrhea. That is pretty much the sum of total for classic Celiac Disease, of which I presented with and was diagnosed. To say I was having explosive diarrhea is an understatement. That is what usually happens with a food intolerance, most notably wheat. And, yes, symptoms can come and go. That happened to me and is probably the biggest reason I went a lifetime without a diagnosis till age 46. I also would react to certain foods violently and then would eat them again at a later date with no problems. The wacky ways of the immune system!

OK...I'll add another thought....children under the age of 5 are terribly hard to diagnose because blood tests are notoriously

unreliable in kids of that age. Sometimes it takes many years before enough damage has occurred to measure and their immune systems are not as developed as an adults. I think you should put him on a strict gluten-free diet to see what happens. If there is improvement, over time, and then you try and feed him gluten again to see what happens, is one of the best ways to determine Celiac, regardless of what those clueless doctors think. You may need to take action on your own if you want results. I wish you the best of luck in figuring this out but it sounds like Celiac to me!

[SCookie]

Thanks.

Bubba's mom- it could be fructose, soy, anything. at this point I have no clue. I guess I do have to be the detective but I'm not doing a very good job at it.

Gemini- thanks, it's helpful to hear that the waxing and waning of symptoms over time is not uncommon. As to the dismissive doc, what I posted here is nothing! my husband is shocked at some of what he said to me. Basically he thinks I am a bored housewife and I'm feeding my kid some restricted health nut diet, which is far from the case on both counts, not that he would know since we discussed neither my employment status or my kid's diet. Idiot.

Anyway, I'll keep plugging away trying to figure out what's going on.