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Hi Celiacphiles,

I received quite a few more interesting messages regarding blood testing:

I am thankful for your comments here in regards to blood tests. I am 41,
celiac/dermatitis herpetiformis diagnosis 12+ years ago, MS diagnosis 14
yrs ago.  I am glad to hear your comments, knowing that our 17yr. old is
going for tests, blood tests, that show NOTHING - our 14yr. old is celiac
diagnosis from age 4, and I know from experience, that it is important to
catch it and act on it immediately even if you think you have it, due to my
MS diagnosis because of NOT knowing about it.  Our 17yr old is scheduled
for a biopsy on the 22nd of November.

In the meantime, my husband and I opened a store on-line
www.glutenfreeforme.com
it is a great resource for all ages of celiacs. It is good for your health
and tasty stuff too!!

check us out and enjoy the fruit of our 'experience' all around! (at 41, my
favorite is the gummi bears, pretty pathetic but true!!)

thank you for your insight Susan, it is encouraging to hear what we
understand and know, and not to think that we are crazy, but accurate.

thank you so much!!
*********************
I saw your post on the EEAC and am curious to know the doctor at
Medical USC that you used.  Are you still dealing with this doctor? I ask for
two reasons. First my daughter is a celiac and I've recently started a ROCK
group in the Columbia area.  Occasionally I will be contacted by an adult
who has recently been diagnosed or thinks they have it. it would be nice to
be able to give them a name of a doctor in SC who is familar with the
disease.  Thank you.
***********************
Thanks for the entertaining summary. My father was finally diagnosed at age
83. His numbers were several orders of magnitude above the high end of
normal. He's doing better since he went g-f, but it's slow progress.

(I was diagnosed at 43, and I was not thin. My son was diagnosed at 3-1/2,
14 years ago. He was near death's door by the time the doctors figured it
out. He's healthy now. Hurrah!)

Thanks again for the cheerful summary,
*************************
Just to add to your list--my mother was 78 when she was finally diagnosed
after being told she had several different things--including Crohn's
disease.  She is also overweight.
*************************
I was 47 was sick my whole life. From infancy on had to go to Houston Tex.
Took my youngest son(10) and two grandsons (babies). No tests were done;
diagnosis was done from a journal I had written on each of us. I'd been
three yrs on an elemental liq diet, the babies and my son all on the same
liquid (just happened to be gluten free)  and a sick teenager at home. It
was the best day of my life, I found a biopsy and  autopsy report on my
cousin, I wrote for my baby brother (died at 17 mo old) from uncontrollable
diarrhea. My dad was very ill.
  A couple yrs later a no good doctor put my grandsons back on gluten for 3
days, did a biospy and said no celiac here, the dummy. They lost 13-14 lbs
in six wks each, underweight bones sticking out and the older of the two
got mentally ill. He's gf since last yr (age 23). His 5yrs old son is gf.
He got really sick very young too.
The last 10 yrs I've lived on tpn. I did have a biopsy. 16 yrs strictly gf
(as the only thing I could tolerate was the liq diet) My gut never healed
permanent damage. I was told in Tex blood tests and even biopsies can be
false neg.
  When will doctors ever get it right? I still have family suffering
wanting a diagnosis.
******************************
I tested negative for Celiac Antibodies and biopsies of villi.
Still, Gluten is a disaster for me.

My primary care doc. from the very beginning said many people test
negative but then benefit from a GF diet.

The doc failed to inquire about my diet beforehand & I'd been Gluten-free for
many, many months.  Later I learned you have to eat Gluten before the test.
One doc. specifies 14 days of gluten-eating before the blood sample
**********************************
I'm 58, I'm not thin, and I have it, so...
**********************************
Thank you all again very much for all the insightful replies!

Celiac best,
Susan

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