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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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