Re: To Louise FW: 1st Biopsy

[Guest guest]

*Thank You-Thank You*, . This is *exactly* the information I was looking for. This is also what I thought the testing would tell me...if I still have damage, etc. Knowing if I have a certain combination of the Celiac gene would be nice to know as no one else in my family has been tested. This could prove useful to me, my daughter, and the rest of my family as well as generations to come. Louise Audellart + designlouiseaudell.com(510) 531-4607From: Darcy <ddarcy@...>Louise Audell <louise_gd@...>Sent: Thursday, September 17, 2009 9:53:21 AMSubject: To Louise FW: [ ] 1st Biopsy

Hi Louise, I’m trained in genetics – near the end of my genetic counseling

training at Stanford. I cannot speak for Stanford of course. From my research

and training, I can tell you a bit about the genetic side of celiac disease. I’ll

just be brief, but if you want to know more, I’d recommend asking your doctor for

a referral to a genetic counselor or geneticist. Most doctors are not

geneticists and don’t have a solid understanding of the genetics of most

diseases. There are genes called HLA genes which are associated with many

things, one of which is the autoimmune disease called celiac. There are a few

different configurations of these genes which are associated with a higher risk

for developing celiac disease (CD). Having one of these configurations raises

your risk, but does not mean you will get celiac. There are various companies

(labs) which will test for these celiac HLA genes, and they don’t need to know

which genes your relatives have first. They just run a full panel of tests. It

is true that for some genetic tests, it’s very useful to know what your parents

have first, but in this case, it’s not needed. As I say, most doctors don’t

have the background to understand these nuances. You can have your daughter’s

genes tested, and she will either have one of the combinations or not. Without

you being tested too, you won’t know if her combination is the same as yours,

and that would be interesting to know, but not absolutely necessary. Kimball

Labs offers an easy saliva test if you decide to do it, and they will mail it

to you, then you mail it back. As far as testing her again, our genes don’t change, so there

would be no need to do a genetic test again. However, if her genes do show that

she’s at risk, then you’d want to test her blood for celiac antibodies approx

every 2 years (or sooner upon seeing symptoms) to see if the disease has developed.

(But if she’s strictly not eating gluten, there’s no antibody test sensitive

enough to tell, and so no testing needs to be done.) It is quite common that

people who do carry the celiac HLA combinations never develop the disease. The

genetic test alone is not sufficient information to diagnose the disease. As far as your own biopsy, I think it’s fine to do one to find

out your own state of health at this time on your current diet. It’s an

endoscopy which reaches the duodenum, no need for a colonoscopy (for celiac

damage). I’d also have the blood test drawn (celiac panel) to see if you do

have elevated antibodies. In case your biopsy is positive, your antibody level

will give you a clue as to how successful your diet has been. I hope this is helpful! Best wishes,

From:

[mailto: ] On

Behalf Of Louise Audell

Sent: Wednesday, September 16, 2009 5:38 PM

Subject: Re: [ ] 1st Biopsy

My doctor hasn't prescribed a biopsy, I am. I have an

appointment with my Dr. next week to discuss this. I keep getting everyone

telling me that there's no official diagnosis until I get one, and that we're

just "guessing/estimating" that this is the real problem.

I've also had my first child. She's now 2. I was told they couldn't really test

for the Celiac gene if they didn't know which one I had, and only a biopsy

would tell me this. Also, that my daughter would need to be re-tested when

she's 4 or 5 because this one might not be...I think she said...accurate, until

my daughter is older.

I'm also not convinced that I've completely recovered from gluten, and that I'm

eating 100% gauranteed, gluten-free. I'm trying, and I stick to things that

don't make me sick...I read labels, I use this forum, I make phone calls, etc.

At this point, I'd be checking to see if there's any damage or other problems

going on in there...a colon check would be good too...as it's seemed for years

that my body just won't ride itself of toxins, no matter what I do! Something's

fishy.

Gotta start some place...

Louise Audell

art + design

louiseaudell.com

(510) 531-4607

From: Wallace

<AWallace@...>

Sent: Wednesday, September 16, 2009 3:03:00 PM

Subject: RE: [ ] 1st Biopsy

If you’ve been GF for years, a biopsy

probably wont prove anything. You have to be eating gluten for the

endoscopy to see the damage. Since you’ve been GF – the idea is that

you’ve healed and there’s no damage. So im not sure why your doc would

prescribe you get one? Anyone else? Ive had 2 and also a capsule

endoscopy. No pain on my end except for a sore throat the after the first

one. I was in “twilo†anastasia. Not painful and takes less than 5

minutes. No annual biopsy needed. Don’t be

nervous…it’s really nothing. -

From:

[mailto:celiacbayar eagroups (DOT) com] On

Behalf Of Louise Audell

Sent: Wednesday, September 16, 2009 2:41 PM

Celiac Bay Area

Subject: [ ] 1st Biopsy

Hi:

I'm considering having my first biopsy for an official diagnosis for Celiac. I

had the blood test done years ago, and have been living GF and somewhat diary

free, all this time, but now I'd like to make the diagnosis official.

I've never had a biopsy before...any tips 'n tricks from anyone who's done

these? Questions to ask my doctor, things I should ask for before having this

procedure done (like being knocked out, hah-hah!), and how does it work? Is it

painful? How long does it last? etc-etc.

And, will I have to do this again? As in, have an "annual biopsy".

Ugh.

Please advise...I'm a bit scared/nervous.

Louise