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Thanks to all who so generously replied - I received
25 responses altogether.
The overwhelming majority of people suggested "going
with my gut" (pun intended in most cases!), and
keeping him gluten free for now.
Many people said their children's symptoms were very
similar to Carter's, and many had no known family
history of celiac, so diagnosis took a long, painful
time.
Two people suggested staying on gluten and getting a
biopsy before committing to a gluten-free diet.
We have chosen some middle ground, after meeting with
our pediatrician last week. We will see a pediatric GI
doc who specializes in celiac next week. For this week
only, we have re-introduced a small amount of gluten
(Cheerios and pasta at dinnertime) in order to have
the bloodwork done. Regardless of the results, we will
return to a gluten-free diet until he is older. But as
long as he hadn't been gluten-free for very long yet,
and we were able to get in to the specialist, we will
give the bloodwork a chance. If it's positive, I won't
feel the need to re-visit a gluten challenge ever.
(The current gluten challenge is going horribly, by
the way, and I'm not even sure we will make it through
the week - he's been awake 2-hour stretches in the
middle of the night the last two nights, and he's had
at least one temper tantrum a day again.)
Below are a few excerpts - so many were so similar
(which is great - there was definitely a consensus), I
will not post them all. It was notable to me that at
least a half-dozen people specifically mentioned that
their child had eczema similar to what Carter has
experienced; and a few others noted that the dairy
allergy cleared up once on the gf diet, which I do
remember reading about. That's encouraging!
Thanks again to all.
-Kim in Chicago
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Sounds like you have done some great detective work.
My son was introduced to his first gluten containing
product (cheerios) when he was 10 months old. He was
finally diagnosed at three years after many,
many, many problems. Interestingly, he had eczema on
his torso that cleared up finally once he went GF.
Personally, I wouldn't hesitate going GF, but it is
understandable to desire the formal diagnosis.
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I have read that it is best to keep children who are
at risk for allergies or celiac off of highly
allergenic foods for as long as possible. I have done
this with one of my children and she is very healthy.
I have another baby and I plan to do the same with
her.
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I don't think its ever too early to go gf. Especially
with the family history of celiac.
---------
I would say do gluten free until he is big enough that
you would feel comfortable doing all the testing.
Then put him back on gluten and do the testing.
---------
If I could have avoided the pain and stress he went
thru, I certainly would have. I read your email and
thought that you know the answer - you have a happy
baby when off gluten and a miserable baby when he's on
gluten.
I'd take him off gluten (may help his milk intolerance
as well). When he's older and able to communicate
better - you can test him then if you want.
And maybe they'll have better testing by then. I
think you've got
nothing to lose and everything to gain by going gf.
---------
Maybe you should find another doctor who can help you
get to a diagnosis more quickly. I'd hate to see your
child suffer for a few years before being officially
diagnosed. And, the earlier he goes gluten free if
necessary, the easier it will be for him.
---------
I recommend having your child biopsied now to see if
there is any damage to his intestines before he is GF
for too long. I would not recommend reintroducing the
food ever (not even after he is 2). The proof is in
the changes you see, don't let anyone make you think
you imagined them.
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