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Help!!  My son's antibody tests came back negative and I feel like I am
going crazy!  Here is my son's history, I am in need of advice.
At age 1 he had allergy testing done, was allergic to: wheat, oats, milk,
eggs, chicken, beef, pork, fish, tomatoes, chocolate, and peanuts.
At 22 months the doctor suggested we try him on wheat products again and
watch for a reaction (typically he broke out in huge hives, screamed,
rolled around on the floor, and wheezed.) - we noticed no reaction.  In a
couple of months he began to have diarrhea - he lost weight - arms, legs,
and butt were very skinny, stomach large and hard, face chubby.  For six
months more he had diarrhea before a doctor told me it wasn't the "flu."
At age 2 1/2 he was diagnosed with celiac disease after 1. no ova or
parasites in stool, 2. lots of fat in stool, 3. vast improvement after 3
weeks gluten free, and 4. diarrhea (and mood swings!!) when challenged
with wheat products. - no antibody tests or biopsy was performed.
At age 4 we took him to a gastroenterologist, who after looking at his
history and running another stool fats test (still positive) - said it
was celiac disease and no futher tests were needed at this time.
He also was tested again for allergies, no longer allergic to wheat,
oats, meat (of any kind) or chocolate, but had developed allergies to
yeast, molds, ferments, mushrooms, melons, and celery.
At age 6 he began to have a lot of diarrhea again, and complain of
stomach pain.  He dropped down to about a 500 calorie a day intake
(supposed to intake 1500 cal).  At this point I was very careful with his
diet and beginning to worry that it might be something else, or
something in conjunction with celiac disease.
Tested his allergies agian - just milk, peanuts, and yeast now!
Went back to the gastroenterologist about 3 weeks ago, he had just
*heard* about some new blood tests that could be used to detect celiac
disease.  We challenged him with 6 poptarts that weekend (Lohr thought they
were heaven, he is allergic to yeast, so no bread!) and the blood tests
were run on monday - they all came back negative.  Stool sample showed no
fat, no ova or parasites, no giarrdia, and *no normal flora*.
Thursday two weeks ago they said put him back on wheat - Saturday he had
diarrhea so bad he didn't make it out of bed.  Took him off wheat again
until Wednesday (under Doctor's suggestion), put him back on wheat, the
next day I am called from work to come get him (stomach ache, sleeping -a
rare thing).  Now he is off wheat until tommorrow when we try again
(Thursday he was running a fever, so it could have been something else.)
 
So, if it isn't celiac, what is it?  btw, he has had no diarrhea since
last sunday, even though he ate wheat on wednesday, and his appetite has
greatly improved - though he still complains his stomach hurts. (he seems
to crave wheat products, begs and pleads)
Have I been depriving this kid of much needed calories on his
already restricted diet over a miss understanding?
Did we challenge him long enough before the blood tests?
Since the blood tests are negative, should we have a biopsy done (the
gastroenterologist seems to think this is not necessary), or assume it is
something else?
 
Normally I feel pretty sure about this subject - I never really doubted
my son's celiac disease.  I have done lots of research, written papers
for my microbiology classes on the subject, and helped out newly
diagnosed celiac patients.  I just feel completely lost at the moment.
One last comment - lately (since the beginning of the school year) he has
had a terrible time controlling his emotions - anger outbursts, tears,
and hiding have become common place.
Thank you for taking the time to read this, any suggestions would be
greatly appreciated.
 
Christine Childs