Dear Jennifer,
Please try to find a different doctor to go to. You might be able to
educate this one, but she sounds like she will make everything hard on
you.
I talk to many people that are first joining our support group and find
that
many people are just like you. They do not biopsy for many good
reasons,
and some of them regret it later. But some of them don't care what the
doctor says, and they know what works for thier bodies.
Be firm, and don't let this doctor get you off track. Meanwhile, it
would
be good to print off some medical journal reports, etc that you can find
that would fit your situation. Anything from the national research
places,
like the organizations displayed on this page.
http://www.alamoceliac.org/acnationalorganizations.html
Click on any of these logos and read some of the research. Print
anything
that will help your case, and point out that it is from the authority,
university, NIH, etc.
I just returned from the national GIG meeting where I heard the top
research
doctors speaking. Most of the questions from the audience had to do
with
the complications of getting tested. Most were in situations as you
described for your daugher, or some variation of that. The doctors were
hesitant to tell anyone it is not necessary to have the biopsy, but most
of
the time, they conceded that under their particular circumstances, they
do
understand why they didn't do it at the beginning.
Both of my grandchildren are gf. The 5 year old was told at 2 that he
was
wheat and egg allergic. My daughter took him off wheat for that
reason,
and he eats gf. They dont intend to ever put him back on wheat to "test
this theory". His grandmother (that's me) has celiac, biopsy dx'd.
Then
his 7 year old sister was screened by bloodwork and she had no symptoms
at
all, but they just wanted to test her. Her ttg was high enough that
they
chose to just put her on a gf diet, no biopsy either. Their
pediatrician
agreed to this. Their mother has had biopsies twice and told she
doesn't
have celiac. But she is gf because she can tell the difference and is
much
healthier overall. We are beginning to call this conditon gluten
intolerant. If you have gluten intolerance, you can have the same
symptoms
as celiac, but just do not have flattened villi, or else you are not
biopsied, BUT wheat and gluten damage your body, and make you sick.
So, you stand firm, protect your child, and I hope you can either
educate
that doctor or find a new one.
This is longer than I intended, but I felt like letting you know there
are a
lot of others in this same situation.
Anne Barfield
www.chickenparadise.com
210 340-0648
Just wanted to say thank you for the 60+ replies I received. Most were
diagnosed by biopsy but some just bloodwork and a GF diet.
Just to give you a background - as most of you know - my daughter who is
4-1/2 years old no was diagnosed at 18 months with cd. She was
diagnosed by bloodwork only. When she was born she had a seizure
disorder, low muscle tone, and later had a speech delay. She had been
through TONS of bloodwork at two different hospital as well as MRI's,
EEG's, and Cat Scans - all of which she needed to go under for. So when
she was 16 months she had a viral infection with diareha which lasted
about 6 weeks.
We then brought her to a wonderful gastro doctor who ran a battery of
tests and her TTG levels were elevated. He suggested that we put her on
a GF diet and retest her in 6 months. So we did and her TTG levels were
negative! He was amazing and gave my husband and I an enormous amount
of credit for adhearing to the diet. She then started gain weight,
speak more, her moods had greatly improved, her muscle tone had gotten
slightly better, her stomach did not hurt anymore, she did not have
diareha anymore, she did not zone out nearly as much and her energy
level had changed enormously. So we left her on a gluten free diet now
for the past 3 years and she has made tremendous strides with her moods,
energy levels and growth. On occasion she has had accidents and we see
the differences it makes.
So yesterday was her annual check up and her first gastro doctor had
left the practice to become a nutrition doctor and referred us to
another doctor
there. Well she came in - and the first words out of her mouth were
your child doesn't have celiac disease.
I was floored.
The first words out of her mouth for not even seeing my daughter was she
didn't have it. She said This genetic test result shows negative... so I
pointed out that the genetic test was for my other daughter not the one
she was seeing.
Now I know that the golden rule is a biopsy, but we, along as her
original gastro doctor thought that a biopsy at this point in her life
with all she had been through was not necessary. Her bloodwork as well
as her tremendous response to the gf diet was good enough for all of us.
Plus
the fact that when she does eat something with gluten in it, she has all
classic signs of CD.
The doctor was very beligerent and spoke to me like
I had no idea what I was talking about. She said "Celiac Disease is a
lifelong thing, an allergy to wheat is something she will grow out of."
then proceeded to name every case she has seen and that she would show
me charts and before long, she had my daughter all scheduled for the
biopsy.
I was livid. So I asked her if she has the disease or the allergy, what
would I do differently? She said nothing. So what's the point then?
She has classic CD symptoms when she is glutened. Her mental capacity
is severly diminished - which I was under the impression was not due to
an
allergy. I told her I would not be doing the biopsy. I didn't feel the
need to have her go under again for 2 biopsies one now and one in 6
months after her being gluten for all that time.
I did not want to put my daughter through 6 months of hell with stomach
pains, diareha, mental instability etc. Now I know that most of you are
going to yell at me for not doing the biopsy, but at this point in her
life, its just not something I want to put her through. She has
responded to the GF diet and I am okay with her being normal. If she
were to go through the process of eating gluten for the biopsy, I just
don't think that is fair to her. When she is glutened she complains to
me that her tummy hurts and she feels funny - and when it finally gets
out of her system, she sais "oh mommy I feel so much better."
So thank you for letting me vent about a doctor who should learn a
little
more on bedside manners. Oh and btw, when she finally examined her (we
waited 2 hours in the waiting room) she looked in her nose and throat
and
told me I should have her tonsils and adnoids removed that she knew
someone! I told her that we already have an ENT that we love and when
she didn't know who they were (different hospital affiliation) she told
me that they weren't good. Thanks again...
Jennifer
NJ
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