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Hello All,

  I have been meaning to write to this list for a long time about genetics
and celiac disease and since there have been many questions lately referring
to this topic, it is a good time to summarize what happened to my celiac
daughter……Sorry that this is so long.

  My daughter, Allison was diagnosed with celiac disease 8 years ago, when
she was 5 years old, by both blood tests and endoscopic biopsy.  At the
time, the only celiac symptom she had, was that she basically had stopped
growing.  She was very tiny for her age.  We were very lucky to have a
knowledgeable endocrinologist that figured out that she had celiac disease
right away and not some kind of growth disorder.

  Fast forward 6 years……At the age of 11, Allison was still extremely tiny
for her age.  She was 2 years bone age delayed and was growing at a very
slow rate.   From what I have read, most kids who are small because of
celiac disease, make up their growth deficiency after going on a gluten free
diet.  So, back to the pediatrician to discuss why Allison was still not
growing.  Our pediatrician sent us to a pediatric gastroenterologist Dr. to
find out if there was something else going on with Allison in addition to
the celiac disease.

  Our new gastro Dr. first suggested that we start with blood work to make
sure Allison had normal TTG and IGA and anti-endomysial antibodies.  Just to
make sure that we were doing well with her GF diet.  We had blood work done
by Prometheus Labs.  At the same time, our new Gastro Dr. suggested that we
also have Genetic testing done by Prometheus as well.  So, we had all of
these tests done.  Her blood work came back perfect.  One glitch
however….Allison DID NOT have the genes for celiac disease.  NO DQ2 and NO
DQ 8.  Wow, what a surprise.  We wondered if we were wrong all along about
her having celiac disease after all of this.  So, just to make sure, we had
the genetic testing done a second time.  (I might add that this is $1500.00
each time.  Our insurance does not cover this).  No genetic markers for
celiac disease showed up the second time either.

  So, then what?  I started researching the archives and wrote to Dr. Fasano
and others about whether or not there was such thing as a person who DID
have celiac disease, but DID NOT have the gene markers.  Dr. Fasano wrote to
me and told me that there was a very small percentage of people who might
fall in to this category.  My gastro Dr. (who by the way, went to Stanford)
said that if Allison did not have the gene markers, that she DID NOT have
celiac disease.  She recommended that we put Allison back on wheat.  I think
somehow she thought that if Allison went back on wheat, that she might start
gaining weight and grow.

  Next, introducing wheat.  So, we gave Allison bread or some kind of wheat
every day.  Remember, Allison never had any symptoms of celiac disease
except for lack of growth.
  Nothing happened.  She didn’t get sick or vomit or diarrhea or anything.
She ate churros and krispy cremes and all of the things she always wanted to
try, since being diagnosed at 5 years old.  When we started her on wheat, it
was about Thanksgiving time.  In March, we were on vacation and Allison
vomited.  Then, diarrhea.  Then, migraine headaches and she got VERY, VERY,
sick.  Within a two weeks period of time, I think she lost 5 lbs.  At age
11, she was now down to 48 lbs.

  I called her gastro Dr. and she said that we needed to do her blood work
immediately again to see what was going on.  Well, as I’m sure you have
guessed by now, Allison’s TTG levels were extremely high and her Dr.
confirmed that she definitely DID have celiac disease after all.  Her Dr.
then did another biopsy just to make sure.

  So, since all of that, Allison is now back on a GF diet and healthy again.
She is still VERY tiny.  We just don’t know why.  She has had every test
known to mankind.  We are just happy that she is healthy now.

  In summary, I will say this.  We now know that you definitely CAN HAVE
celiac disease without having the genetic markers for it.  Do not think that
if you don’t have the genetic markers, you don’t have celiac disease.  My
daughter is living proof.

  One other interesting thing that is discussed on this list quite a bit.
It took 4 months of eating wheat before Allison showed ANY signs of being
sick.  So, it can take a long time for gluten to do damage in the intestine.
It is not necessarily an immediate thing.

  Have a great day,

  Beth Kassis
  El Dorado Hills, CA

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