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Thank you for your many responses to my questions on testing my 4-year old
for CD through blood work.  I have summarized the responses one-by-one,
although it probably would have been better to have synthesized them a bit
more.  Unfortunately, Im really short on time.  If anyone has questions on
any of this, please contact me.

I think what I will try to do is

1.  Explore with the pediatrician whether the blood tests could have been
more accurate as per the information in #12 and other posts.
2.  If further tests dont give a diagnosis, try eliminating gluten from
the diet for 2 or 3 weeks and then re-introducing.
3.  Explore whether my son might be having a problem with candida or other
intestinal flora overgrowth.
4.  Supplement him with calcium, give him more water.
5.  Contact the Gluten Intolerance Group in Seattle.
6.  Look into what the RAST-test is.


The verdict so far appears to be that blood tests are often inaccurate.
And that, if he does not have cd, he may very well have gluten intolerance
or other food or environmental allergies that should be tested for.

So here are the mini-summaries.

1.  Load with wheat and have a biopsy.  Blood tests are not 100%.

2.  Asked for a good summary because her own son has tested negative for
cd by blood test and biopsy and has most of the symptoms listed in my
post.  In addition, when exposed to gluten, he has auditory
hallucinations, mild add, and brain fog.  He is also lactose intolerant.

3.  Her sons blood was tested for cd when he was 4.  The results were
negative.  He continued to get worse, and was actually starving so the
doctor did a biopsy which did show cd.   Hes now a healthy, gluten-free
7-year old.

4.  Dont be discouraged by lack of medical tests proving something Ive
seen concrete evidence of.   She lost up to 20 lbs after 8 months of
diarrhea and fatigue until she finally eliminated wheat from her diet.  If
my son tested negative for cd through a blood test but shows improvement
when on a gluten-free diet, he likely is gluten intolerant.  There is no
test for intolerance.  The treatment is to stay off gluten.

5.  Her daughter has cd but her 3-1/2 year old son, who seems to have a
problem with wheat also, tested negative for it.  However, he is also
intolerant to dairy and, if he does not consume dairy, the problem with
wheat does not seem to be as bad.  She suggests looking at my sons diet
for milk and then questioning the doctor about the blood test, as they can
give false negative results.

6.  One responder had several helpful suggestions, as follows:

Tooth problems and leg pains sound like calcium deficiency.  Try him on a
chewable calcium pill.  Keep a few by the bedside.  They should work
within 15-20 minutes.  The therapeutic dose for an adult is 2 grams.  She
recommends Shaklee.

Test for other allergies.  Remove things from his diet then reintroduce
them.  This method helps allergic people become aware of what their bodies
are trying to tell them.  "A good book to read is Dr. Mandell's 5-Day
Allergy Relief System  by Marshall Mandell, M.D. -- he gives detailed
instructions on how to test adults and children at home and when medical
supervision is necessary, and then how to deal with any detected
allergies. He also discusses chemical intolerances and environmental
allergens -- your son's congestion especially might be due to something
other than food."

Try adding Vitamin C (but not too much as this can in itself cause
diarrhea) and Echinacea to the diet to boost the immune system.

Allergics often require more than the usual Vitamin B complex.

Give him lots of fluid, try for 10 glasses a day.  Try saline washes for
the nose (have him snuff salt water up one nostril while holding the other
shut).

He might have a yeast overgrowth problem from all the antibiotics.  Try
testing him for that.  Look at The Yeast Connection by William Crook, M.D.

Look for the "splendid huge book on how to cook for allergics" by Marjorie
Hurt Jones.  Its full of great ideas if you're wondering what in the world
he can eat if wheat and dairy are forbidden...

Avoid sugar/beet sugar/sucrose.  Its hard on the immune system.

Food allergies are the easiest thing to control although family and
friends will try to sabotage.  Dont be afraid to find them.  My son can
still have a rich and varied diet.  Try to get my son to be in on it.

7.  Ron Hoggans post in full:

"Was IgA deficiency ruled out? Almost 20% of celiacs demonstrate IgA
deficiency, yet the blood tests used often test for only IgA antibodies.

"What tests was he given? If only anti-endomysium, was there any antibody
reaction present? I have heard that some labs have set a minimum level of
antibody reaction (I presume that would be a function of the number of
dilutions) in order to increase the correlation with villous atrophy. But
if
there is *any* endomysium antibody activity, I would consider that to be
active celiac. I think that most researchers working in that area would
agree."

8.  Adults blood tests came back negative but feels much better with a
gluten-free diet.

9.  20-month olds blood tests came back negative but biopsy showed
considerable damage to the villi.  Child is now a health gluten-free
5-year old.

10.  Posters children were not diagnosed cd through blood tests but are
doing much better on a gluten-free diet.

11.  The blood tests for celiac disease, including the anti-EMA test  are
not perfectly sensitive.  A physician here at the University of Iowa, Dr.
Joseph Murray, did a study in which he sent blood from confirmed celiacs
to a number of testing labs around the country. The various labs made the
correct positive diagnosis at different rates. My recollection is that
those rates ranged from about 55% to 90%.  Part of the problem is with the
test itself. Another is that some people ( I think it is about 1 in 10
celiacs) have an antibody deficiency that makes the tests false negative
(IgA deficiency).

Its alalso possible that my son has gluten intolerance, which does not
show up on a test but which is confirmed when symptoms improve on a
gluten-free diet.

Poster suggested that I contact the Gluten Intolerance Group in Seattle
for recommendations on a cd-expert pediatric gastroenterologist.  (I
certainly will!)

12.  Bill Elkus sent me a copy of the DIAG-TST file:

Biopsies, Serological and other Noninvasive Screening for Celiac Disease
                            Version 5.0
Copyright Michael Jones, Bill Elkus, Jim Lyles, Lisa Lewis -
1996, 1997 - All rights reserved worldwide

The file is very long and very informative.  My interpretation of how it
answers my question as to whether to trust the blood test for cd is as
follows:

As one of the tests performed for my son was IgA anti-endomysium test, and
as that test, under the right circumstances is approximately 100% accurate
according to this file, celiac disease is not a factor in my sons health
if the following is true:

He does not have an IgA deficiency
The samples were collected and shipped correctly
The laboratory was experienced at the tests
He was on a gluten-containing diet at the time

Anyone who wants to see the file should contact one of the authors or ask
me.

13.  Poster had trouble with stuffy ears, constipation, and depression
until she went off gluten at the age of 50.  She urged me to take gluten
out of my sons diet.  She also suggested that I add supplemental calcium
for the leg pains.

14.  Poster says that, although she has never been diagnosed cd, she feels
much better without gluten in the diet.  And the dark circles under her
eyes have disappeared.  She feels she probably has an allergy, rather than
cd.

15.  Poster was diagnosed at 39 and went through a lot of unnecessary
suffering.  She recommends a biopsy as blood tests arent always accurate.
She also mentioned that lactose intolerance is common with cd.  (My sons
pediatrician says he is not lactose intolerant but, rather,  intolerant to
the protein in cows milk).

16.  Poster got a false negative response from the cd blood tests.  CD
showed up in the biopsy.

17.  Poster stated that my son can be allergic or intolerant to grains but
not have CD.  S/he suggested my son have the RAST-test and other allergy
tests.  I will look into this.

18.  Poster suggested I try a lab such as Specialty Labs, Inc. in Santa
Monica, that has experience in testing for cd.  Otherwise, I could go
three other possible routes.  I could have him biopsied.  I could try an
elimination diet (eliminate the wheat for 5 days and then reintroduce and
see if symptoms reappear).  Or I could try an elimination diet that works
better for testing for cd (eliminate the wheat for 14 days.)  She feels
the symptoms I mentioned have a strong correlation with celiac and the
diagnosis should be pursued.  She did this test for her 11 year old son
who did not test positive for cd and who did not feel he had it.  The
change has been remarkable.  Poster mentioned recent work on the
connection between tooth enamel defects and cd that has been done mostly
in Finland.

19.  Poster asked me to forward all responses to her so she can forward
them to her friend in France who has a 4-year old son with the same
symptoms who also cant tolerate dairy.

20.  Poster states that he feels bloodwork is not 100% reliable, only
biopsies can be really relied upon.  He feels we should seek advice from a
medical center that is associated with a research facility or  medical
school -- and that has a Pediatric Gastroenterology department. They are
extremely pleased with their ongoing relationship with the Ped. Gastro.
unit at Johns Hopkins and travel from Pennsylvania to visit their
facility.

Thanks again to everyone.

Noemie