Testing Of Family

[laurelfla]

ok, so here's the deal. i was diagnosed this August, so my sister got tested and she's been diagnosed about a month. my dad just went to the dr. to get tested and he told my parents they probably both had the recessive gene for Celiac, which is why both their daughters developed it. oddly enough, the doc wasn't interested in doing bloodwork -- just went straight to the biopsy. we don't have the results of that back yet. what i am wondering is why he'd refuse to test my mom? i mean, i don't think he's openly refused but he said that she did not need to get tested. neither one of my parents has symptoms. i mean, my dad has had a lot of back/disc problems but nothing digestive or emotional or anything that would really suggest Celiac. is the dr. justified in deciding that my mom doesn't need to get tested? and if my dad does have it, does that mean she probably doesn't? i'm super confused and would appreciate any insights!

[Rachel--24]

I think both your mom and dad should be tested...period. I dont know why the doctor would be unwilling to test her.

You dont have to have symptoms to have celiac but maybe this doctor is unaware of that fact.

[Matilda]

...

[bluelotus]

I am so glad you reiterated that, Matilda!! I have posted that fact about celiac disease's inheritance several times and in several relevant forums, but people just ignore it....

You, laurelfla, are lucky that your family wants to be tested, that they love themselves and you enough to wish for everyone's health. My dad and the rest of my family ignore the issue entirely, though everyone in his family seems to have relevant symptoms...... It is so frustrating. Then again, if one wants to die of cancer or some other messed up disease, I guess one has the right. I just find my dad's lack of interest disrespectful in many ways - to me, to any of my potential children or his grandchildren, to himself, to the rest of his family. So annoyed with this now, going to have to stop talking about it.

Wish your family luck, laurelfla.

[cornbread]

bluelotus, I hear you. Thankfully my mother was cool about testing (thankfully because her test was positive), and my dad was eventually talked into it (just to get me off his back I think!), but my other relatives (who actually have LOADS of symptoms... more than my parents) are totally in denial. They are "too busy" to get tested. Hello? Enterolab tests from stool samples - you're too busy to poop into a box?! I think it's denial. But, like you, I find their disinterest disrespectful. It's like they're not taking my condition seriously. People are always "I didn't know you were ill before?" Yeah, well maybe it's because I'm not a whiner, or because problems like depression, brain fog, chronic fatigue and nausea are invisible. People ask how you're feeling, you usually say "fine, thanks", you know? Gluten had been effecting my health, mood and personality for 13 years - it pretty much *was* my personality. It kicked in when I was 17, so all my adult life people have just thought I was short-tempered and weak-stomached (which wasn't considered an illness since it "runs in the family...")

[bluelotus]

Thanks for the response, Cornbread. I also get that "I never knew you were sick before" from my family. Yeahhhhhh....right. 1) You all don't live with me 2) Your body builds up a tolerance and most undxd celiacs don't have symptoms (at least not that are apparent or directly related)...... So frustrating.

[laurelfla]

thank you all for your responses!

i had no idea that the whole recessive/dominant gene thing was not in operation with celiac. i'll definitely pass on the information. i had not realized how very lucky i am that my family has been so supportive. my sister actually got her biopsy report back yesterday and her villi were super damaged. i think she's kind of upset about that, but then i think we're all familiar with that process! thanksgiving is going to be interesting, with all the explanation to relatives, but at least i am not alone, although i never would have wished this on anybody else in my family. the doc put my dad on the diet while we wait on the results come back, maybe in a couple of weeks or so.

i told my sister about the forum, but she doesn't really like computers or technology, so... i don't know what i would have done without you all!!

[Jenn2005]

Laurelfla - I noticed you are from Gainsville. Can you tell me what doctor you see there? I am from Fort Pierce about 3 1/2 - 4 hours south but we are seeing a doctor in Gainsville at Shands. Just curious because we are not having a lot of luck with the doctor we are seeing.

Jennifer

[bluelotus]

Jenn 2005, you should PM laurel and not post your email address, since it is now accessible to whoever reads this....just an idea. Good luck with finding a doctor.