Pediatric GI Issues

This advice has been given a lot previously, but it bears repeating.

From now until the GI appt, keep a food log. Be very specific (not "snack" but "1 peach and 5 Saltine crackers". Not "dinner" but "1 bowl rice with sauteed chicken" or 5 Tyson chicken nuggets and a handful of baby carrots, and Jello pudding for dessert, with a glass of milk", for example). Write down the time of day and then write what bathroom issues occurred, and when.

I found it easiest to buy a simple notebook and make each page one day. On the left, write the times, and in the center, write the details. Your GI will find this tool very useful.

Also, a very easy thing to eliminate for bowel and GI issues is all sources of sorbitol. If he has any food products that are sugar-free or sweetened with sorbitol or mannitol or anything ending in "itol", cut those out immediately. No artificial sweeteners at all. Also remove natural sources of sorbitol, which are apples, cherries, red or purple grapes, some sea weeds. Read every label. Kiwi Strawberry Juice often has apple and pear juice as its first ingredients, as an example. Give him 100% unsweetened white grape juice if he wants a juice drink (green grapes don't have sorbitol). It's good that your pediatrician is on top of things - you need your son to be on gluten in order to do more extensive tests.

I know, it's difficult. Hang in there.

I have IBS with chronic diarrhea. If I drink I explode. If I drink after I eat a full meal I don't explode as much as have a soft BM.

I just have to manage the amounts of fluids I drink in a day and in the evening. If I want to travel the next day I can't drink anything after dinner and I can't drink an excess amount at any time. It comes out eventually no matter when I drink it.

Right now I'm drinking some koolaid and if I dink much more I will have diarrhea in the morning even if I eat a full breakfast. The fluids will be below the food mass.

I can drink stuff throughout the day but eating full meals really helps my bowels to work right, to use the fluids I drink the way they should be used.

If you concentrate on his fluids and when he's drinking a lot you might see a connection. I hope so, it's so easy to manage when you know it's coming and you just stay home near a toilet.

When I travel I eat full meals and bigger snacks throughout the day. Then I can sip fluids and not be thirsty.

It does sound a lot like I did before I went gluten free, but, the only way to tell if it is a problem is to cut it out completely, you can't do it partially. I would wait and see what the GI doc says since it is so soon. If it was in a couple of months, I would say that you should cut it out and see what happens. I imagine they will want to do some imagining for him and this is important. I was reading an article from Rockwell Nutrition about digestive enzymes and how some people can't digest the food they eat so they end up with GI issues. You might want to check it out also. I tried to put up the link for you, but it wouldn't work, sorry.

Poor guy, please keep us posted on what they discover and know we will be sending good thoughts your way.

Has he been allergy tested? Sometimes food sensitivities can manifest themselves in strange ways. The "bloated" comment had me thinking about that...

I agree with the food log, but if you can't do a food log, you can try an strict elimination diet with only the least allergen-producing foods:

apples
avocados
broccoli
carrots
cauliflower
chicken
grapes
lamb
lettuce
mangoes
pears
raisins
rice
safflower oil
salmon
squash
sunflower oil
sweet potatoes
turkey
veal

If he eats nothing but foods on that list for 3-4 weeks and there is no improvement, a food allergy wood be unlikely. Because his symptoms are so difficult to live with (particularly his weight stagnating), I think it would be well worth it to try.

As far as a wheat allergy, switching out a few things won't make much difference in symptoms if his body is acutely reacting gluten. Although you have had your son's blood work done, you don't mention if he's had a blood allergy panel to rule out food allergies beyond gluten. And I'm confused when your doctor said he was likely celiac after he was tested once, then it changed on a different test.

ETA: I just wanted to add that you've said several things "did not work", but I know from personal experience that GI issues are difficult to diagnose and often take many approaches to find out the underlying issue. You mentioned you tried "eliminating things" from his diet, but that's not really how a full-monty elimination diet works (if you are using it to find an intolerance or allergy).
You mentioned probiotics did not work as well, but there are many, many types of probiotics, from dozens of strains in pill form to fermented foods (sauerkraut, kombucha, yogurt).

I can completely empathize with how frustrating and tedious it is to try to figure out if you have a food allergy/intolerance, I can imagine it's that much more difficult for a 4 year old.

Went through this for months with my daughter. (To some degree it will be a forever issue)

Food log, food log, food log with BM log. Track everything. And for a while stop fooling with his diet until you have a good log. Then, eliminate one thing at a time for a while like three weeks to a month. Seriously. If the intestines are allergic (this is a clinical term and not to be confused with sensitive to) they need time to heal for the symptoms to pass. You can cut out the right food but when the symptoms don't pass fast enough you reintroduce it too soon. A child can test as borderline on celiac and then turn out not to have celiac but to be somewhat sensitive to gluten. There are meds that can help with symptoms so that they are more comfortable and gain some weight.

Having said all of that pediatric GI docs are hard to find and finding one that can and will work with you through this process is a godsend!

Did enough people mention FOOD LOG with BM and symptom log. But, be prepared the process of really nailing this down can take a year or longer.... The key is to getting symptoms under control and then weight gain, nailing down exact causes can take time.

Good luck! And consider some of the GI support boards they have awesome info and great emotional support.