Need Info On Celiac Disease

[Guest guest]

I just found out my daughter may have Celiac Disease as well as CF. I

have found lots of info on the internet about Celiac Disease, but I

can not find anything on Celiac Disease with CF. Can anyone help me

out on this?

Thanks!

~Wendi

Mom to Peyton, who turned 3 this weekend!

[Guest guest]

I was in this same boat last year. The blood test for celiac disease came back

positive and i was looking for information. We were told that it was 95% sure

she had it due to the test that came back positive.

After having a biopsy, we found that she does not have it. The doctor said that

only 5% of patients come back with a false positive test and they are usually

diabetics. Now he is thinking that cf patients must come back with some false

positives too.

Has your daughter had the biopsy done? I never did find any information about cf

and celiac disease.

Hope this can help you in some way. I would strongly encourage you to have a

biopsy done if you have not.

My daughter's symtoms are gone due to taking her off of enzymes. I know it

sounds weird but she is dong great and growing just fine and she is a double

delta f508 carrier!

Take care,

Lorenzen, mom of , 16 next month, wcf

[Guest guest]

So we are not the only ones who fixed things by going off enzymes. I thought

we were. took enzymes since diagnosis at 8 months, I really think

she needed them. She was underweight, malabsorbing etc. She was Ok until

about age 13 when she started getting obstructions (or maybe just bad

constipation) a lot. We fooled around with golytely a few times, she was on

colace, she was on Lactulose, she was on Miralax when that came out, finally

we started decreasing enzymes (she was on 3 Ultrase MT 20's at one time) we

went down slowly to one regular Ultrase with meals, none with snack,

finally she just mostly quit taking them, she doesn't take them at all now,

and she is fine, all the digestive stuff solved, no need for any of the

laxative type stuff, no more golytely episodes, etc. Just no enzymes. I

thought she was just weird, because she did need them growing up. Just goes

to show everyone's different but some are the same! Sort of.

love,

M

mom of age 19 wcf but no enzymes!

Re: Need Info On Celiac Disease

> My daughter's symtoms are gone due to taking her off of enzymes. I know it

sounds weird but she is dong great and growing just fine and she is a double

delta f508 carrier!

> Take care,

> Lorenzen, mom of , 16 next month, wcf