What do you suggest?

[Guest guest]

I have a question for the moms out there because I am trying to piece things

together and to make sure my daughter has the best treatment I can give her.

She was diagnoses after a couple of blood test came back positive for Celiac

(but the doctors later told me that they were not the most reliable ones)

and a scope that the doctor said looked like Celiac but the biopsies came

back inconclusive. He then told us to follow up with him at a later date

(but no date was set) and the next thing I knew he was gone! So we followed

up with a doctor I liked until this past fall when he told me that kids can

outgrow Celiac and I dropped him like a hot potato.

I now have another doctor that the receptionist told me all about the

" honeymoon phase " that kids can go through, told me she has support groups

for me, food suppliers nearby, and many other resources (I almost broke down

crying asking where they had been two years ago!)

She said they will probably gene test my daughter before they recommend

anything thing else. In talking to my husband we are not excited about the

idea of a gluten challenge and feel that with what test results we have if

she test positive for the genes that are responsible for Celiac we should

just go on as we have and get a game plan for the rest of the family.

However if she test negative for the genes responsible for Celiac then

possibly doing a gluten challenge and following it up with a full diagnosis.

Without the genes the receptionist said she could still have it but we

wouldn't have to worry about the other kids unless they show symptoms.

All of my other kids have not shown any symptoms at all of Celiac but I also

know that does not mean they cannot have it.

I did not know then that her being GF for a week could skew the results of

the biopsy, the doctor could have had us redo the blood work, and we could

have pursued a full diagnosis at the time but now we would have to do a

gluten challenge.

I am pretty confused and would like to know how others deal with this.

She has been great with the diet change and has accepted it very well (she

is only 4 and was only 2 when we got the mostly sure but not really

diagnosis) and she has not been nearly as sick as she was. She is only 30

pounds at 4 and the doctor is concerned about her.

She has had episodes that could be explained away by a possible gluten

exposure or by a virus. I also know that reactions or lack there of cannot

give us a good a solid diagnosis.

Thanks for your input. Sorry this is so long and hope someone might have

been through this.

Gluten Free makes me feel good and it taste good too!