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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
woudl I do differently? She said nothing. So whats 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 biopsy's 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 alittle
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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