4 Year Old Tested Negative, Now What?

[kim26]

ok, long story not so short:

my daughter was diagnosed about 3 months ago(she's 7) after years of diarrhea, bloating, irritability, over sensitivity, etc. and doing SOOO well now that she's gluten-free!

my 4 year old son doesn't have as dramatic symptoms as she does, but we had him tested since he is having some gi symptoms and they were going to test him anyway. everything came back negative. BUT i have not picked up my copy yet so i can't tell you what exactly they ran.

his symptoms are as follows: stools that are sometimes green, sometimes pale yellow, sometimes mushy, sometimes just pellets.

he complains of stomach aches that at times have him doubled over and crying himself to sleep, he'll eat maybe one full meal a day, the rest of the time he will just snack on little things, or not eat at all, or just drink water...and lots of it!

as far as behavior, we've always joked that he's OCD, everything has to be a certain way or his completely UNHAPPY! for example, today i put my hair in a ponytail and he was driven to tears because "he doesn't like my hair like that". for some reason little things like this send him over the edge!

he's a tall and of normal stature so i don't think hhe's FTT, neither was dd but she did grow 2 inches in 8 weeks once gluten-free!

i know i should probably just start him on the diet, but he's SOOO picky! he'll eat corn, sometimes salad, apples and bananas, other than that he prefers chicken nuggets, inspite of the fact that my husband is a genius on the grill, mac n cheese, fries, peanut butter sandwichs, typical unhealthy kid stuff. lol

if you've read all of this THANK YOU! Where should i go from here????

[Ursa Major]

You know, testing in children under six is notoriously unreliable. A negative test can not rule out celiac disease. He definitely has typical celiac disease symptoms.

You can test him with Open Original Shared Link if you feel you need a 'real' diagnosis. And he won't have to be eating gluten for that test, it is still accurate up to a year of going gluten-free. Or you could just put him on the gluten-free diet along with his sister, which is what I would do if he was my kid.

I am sure he will improve quickly on the diet.

[kim26]

ursa major,

thx for your quick response! if his tests are negative would it be worth it to do a scope? my dd's scope was negative, but the gi doc is so convinced that there's damage somewhere in there she's offered to do the pill cam.

anyway, its just going to be much harder to explain to a 4 year old why he cant have the foods he's used to, my daughter gets it, and feels the difference, so she doesn't fight it now.

are his stools typical celiac stools? my dd always had diarrhea that was darker in color, and muddy or greasy. i just don't know if i should change his diet so drastically without a little more to go on. he's got an appt with his pediatrician on tuesday, and she's great, she's the one that caught celiac in my daughter. so many what ifs!!

[Ursa Major]

My daughter put herself and her five children on the gluten-free diet last year. At that time the children were 1, 3, two 5 year olds, and 7.

The only one who complains at times is the three-year-old, because he very obviously is not gluten intolerant and feels no difference either way. But there is no way she would feed one out of five kids gluten! That would not be fair to the others, as little kids that age are not known to understand how he could cross contaminate his siblings or mother. Their dad will eat gluten foods at work, and sometimes after the kids are in bed (he tried the gluten-free diet, and feels great with or without gluten...... no effect whatsoever).

The others have never complained or even tried to cheat when going places, because they know how gluten makes them feel (except for the baby, because you can't explain the consequences to her yet and that she will have a raw rash on her bum by the next day).

If your son starts the gluten-free diet and his stomach aches go away, that would be enough motivation for him! All you have to tell him is that if he eats gluten foods his tummy will hurt, and if he avoids them, he will feel well. And explain to him exactly what foods outside your house contain gluten.

If you go places where gluten foods are available, point out to him what is safe, and what would make his tummy hurt again. With his stomach pains being so awful, he would not likely ever try to cheat.

It doesn't matter that he doesn't have exactly the same symptoms, or the same kinds of stools as your daughter. No two people with celiac disease will present with the exact same symptoms.

You think you don't want to change his diet so drastically without more evidence. His symptoms sound severe enough to do anything to make him feel better! The gluten-free diet may drastically change his health. In fact, even those OCD symptoms may just go away.

Seriously, I think you have the evidence you need. His sister has it, and it is genetic. In fact, there is a good chance that you or your hubby have celiac disease as well. You might all benefit from making the house gluten-free!

[kim26]

i am on the diet with my daughter, and my husband is suppose to have his tests done tomorrow, but im trying to convince him to go gluten-free regardless of the results. just as you predicted in one of my other posts Ursa Major, my "IBS" has mysteriously gotten much better on the diet! lol i think im going to have a sit down with the hubby and talk about making the whole house gluten-free, I'll just try to find as many substitutes as i can for my son, i know he likes the quinoa(sp?) pasta when i make mac n cheese with it. i think im just overwhelmed, and confused because some days my son is fine and normal, other days he has tummy aches and weird stools. its so hard to sort it all out sometimes! i would be totally lost without this board!

[kim26]

ok i went and picked up my sons lab results and i had another question:

EMA IgA-Negative

tTG IgA - 1 (0-3 being negative)

IgA serum(total IgA) 113- flagged as HIGH

so i know tha low IgA can skew the tests, but i what in the world does a high overall IgA mean?!? if anything?

[nora-n]

Bumping up this message.

I think I read that high IgA means something is going on .

Maybe the antigliadin IgA would show up positive, I think it was not done.

nora

[kim26]

thx nora_n!

I've read some stuff that says it can indicate auto immune disorders, and other things that say it doesn't mean anything. so i dunno. they did not run any gliadin tests, i don't know why. he has an appt with his pediatrician on tuesday hopefully we'll know more then.