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Fed Up


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3 replies to this topic

#1 flowermama

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Posted 10 May 2012 - 08:50 AM

At the end of Novemember my DD was diagnosed with celiac thru blood work. It was her ped that did this. We were sent to a GI, but he was out of the country till the first of the year. Well considering her symptoms were servere and her wheat allergy also tested really high I took her of gluten.
Finally in Jan we see the GI. Who runs his own test including biopsy and guess what she test negitive. Well dah I tell him she has been gluten free for 10 weeks. We make the decision to stick with the gluten free diet since things are going so well and he agrees with me (at this appiontment anyway) that she is Celiac.
Now last week in the process of trying to get things lined up for kindergarten we go back to the GI for help with info to give the school. He now says there is no way my DD is celiac because his test say she is negative, and if I really feel she is then I need to do a 6 to 8 week challenge and re-test.
Man am I fusterated this same doctor just diagnosed her father Celiac 10 days before this appiontment. Its like they cannot keep there patients straight. It took everything I had in that appiontment not to scream in his face. I cannot do a gluten challenge by time we figured out what was wrong with my DD she had been on antibiotic for 7 weeks and still had what we thought was major infection.
Anyway, sorry let my emotions override my piont. I am confused about what to do with school now. Her prescholl teacher was wounderful. She was with us thru the hardest time in my DD life. She has been very careful not to CC my child. My fear is without the accual letter from the GI stating she has Celiac the school is going to think this is a choice I made and not neccessary. How do I get them to understand my child is Celiac and she will become very ill if she even plays with playdo.
Does anyone has any insight on the best way to go about this.
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#2 frieze

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Posted 10 May 2012 - 01:13 PM

At the end of Novemember my DD was diagnosed with celiac thru blood work. It was her ped that did this. We were sent to a GI, but he was out of the country till the first of the year. Well considering her symptoms were servere and her wheat allergy also tested really high I took her of gluten.
Finally in Jan we see the GI. Who runs his own test including biopsy and guess what she test negitive. Well dah I tell him she has been gluten free for 10 weeks. We make the decision to stick with the gluten free diet since things are going so well and he agrees with me (at this appiontment anyway) that she is Celiac.
Now last week in the process of trying to get things lined up for kindergarten we go back to the GI for help with info to give the school. He now says there is no way my DD is celiac because his test say she is negative, and if I really feel she is then I need to do a 6 to 8 week challenge and re-test.
Man am I fusterated this same doctor just diagnosed her father Celiac 10 days before this appiontment. Its like they cannot keep there patients straight. It took everything I had in that appiontment not to scream in his face. I cannot do a gluten challenge by time we figured out what was wrong with my DD she had been on antibiotic for 7 weeks and still had what we thought was major infection.
Anyway, sorry let my emotions override my piont. I am confused about what to do with school now. Her prescholl teacher was wounderful. She was with us thru the hardest time in my DD life. She has been very careful not to CC my child. My fear is without the accual letter from the GI stating she has Celiac the school is going to think this is a choice I made and not neccessary. How do I get them to understand my child is Celiac and she will become very ill if she even plays with playdo.
Does anyone has any insight on the best way to go about this.

you probably are going to be better off going with the allergy.
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#3 pricklypear1971

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Posted 10 May 2012 - 02:07 PM

And, get copies of all records and find a doctor, any doctor, to write the Celiac letter.

Try am ND.
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Probable Endometriosis, in remission from childbirth since 2002.
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Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#4 Di2011

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Posted 10 May 2012 - 07:55 PM

Please don't apologise for being emotional. Your daughter needs you to be!
You should get the wheat allergy letter from your doctor first with something in it about a high level sensitivity to both eaten gluten/cc and topical (to cover the playdough etc).
Then find out who else is available in your region who might be more progressive wrt celiac and gluten intolerance. Get that celiac letter in the first appointment so you don't need to go through all that again. If you don't get it try another. One appointment only. Take a copy of all the history and write a detailed list with letter (with all your and daughters experience) to pass to the clinic before your appointment. Include ALL of her dads information.
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