Celiac Disease Center

Hi Tina,

I just thought I would forward to you a letter a wrote
and sent out to any and all CD research centers and organizations I
could! I guess if you read it, it tells it all, but I will briefly
recap for you.

We just got back form a road trip in which eating was
just way TOO hard! Mostly fruit and cheese ad nauseum—with the kids
eating a lot of candy. I guess I should have researched for weeks
before our trip to see what and where we could eat—but give me a
break. It shouldn’t be this hard! And my sister in law shouldn’t be
having SUCH a hard time getting a test for her daughter who is
suffering daily. Sheesh! I dont’ have much mobility in my life
right now—but I want to help. I want to help get the word out to
people, doctors and the nation—even the Govt so food companies start
complying too and there is MORE non-gluten filled food to eat in a
10,000 sq ft grocery store than just fruits and cheese!!! Katie

To Whom It May Concern,

I am writing this letter to you to perhaps get some commentary from you as
to the state of CD in the USA. I personally have CD, along with my
husband and 2 children. Conventional testing through the doctor’s
office didn’t tell us much. We started with the Prometheus Labs
complete celiac panel for my husband and daughter, who had the most
obvious symptoms. Our daughter’s blood work suggested Celiac, but
said HLA testing would basically confirm it. My husband’s blood test
was completely negative. Since we have no health insurance coverage
due to the cost as self employed persons, we decided to test further
with Enterolab for the whole family, including HLA testing. Those
results showed 3 of us with DQ8 and our son with DQ1. I know that
apparently this test is not verified among the standard medical
community, but it was the test that showed us clearly what was going on
with our bodies. After those results came back glaringly positive in
2005, our entire family went GF with COMPLETE resolution of ALL
symptoms! Complete resolution of joint aches and pains, bloody noses
in the kids, headaches, bone pain, GERD, gas, stomach pains, eye
problems, psoriasis patches, bloating, brain fog, extreme crankiness in
the kids. But apparently, we don’t actually have ‘verified’ Celiac
Disease because of our testing lab—even though going GF completely
resolved us of our symptoms and now inadvertently eating even minute
amounts of gluten can bring back those symptoms very severely!
Right now, my sister-in-law has a daughter who writhes every day with
stomachaches and constipation, is very cranky, has ‘asthma’ and just
says daily “I don’t feel good. I hurt everywhere.” Because our
daugher, her cousin, HAS CD and had the exact same symptoms that were
misdiagnosed with the same excuses for 13 years, I sent my
sister-in-law to our local clinic with the Prometheus testing
information printed out AND an informational sheet from University of
Chicago Celiac Disease Center about how important it is to get regular
testing in first degree relatives and to do DNA testing. To
date—-this child has had 3 stomach x-rays, has been ordered repeated
enemas but the clinic WILL NOT order the Prometheus testing and
apparently there is a question as to whether insurance will pay for
testing—especially the DNA testing!!! WHY?! Apparently, the
numbers of CD in this country are at about 1/100—–with only 3 of
those 100 diagnosed. WHY?! Why is there STILL so much
misinformation like “CD is extremely rare”, or “She can’t have CD
because it doesn’t show up until. the 40′s”. Why will my
sister-in-laws insurance pay for repeated x-rays, enemas, drugs but NOT
CD testing??? Why will the Doctors test for everything else BUT
CD??? What has to happen in this country to get the word out about CD
and how common it is—especially to doctors??   My family and I
just got back from a driving trip from Idaho to Palm Desert, CA. We
chose to drive because we can bring our food and appliances with us and
use them at our destination because finding hot GF food is VERY
difficult in the USA. In fact, in just about every single town these
days there are all the same strip malls with all the same chain
restaurants that serve pretty much 100% gluten filled foods—-without
any accomodation or understanding or knowledge of not only what GF
is—but how to safely prepare GF foods. It seems ridiculous to me
and my family that as we travel, we can eat only the foods we bring,
and when we run out of those foods the only truly safe foods for us are
cold fruits, veggies and cheese from a grocery store—even though
there may be 10 different restaurants with wonderful smells coming from
them right in front of our faces. Because we know that hurdle we face
trying to educate a manager or food server or cook staff quickly on how
to prepare food safely for us—-especially if they have never heard of
CD. So—on this trip we ate cold food most of the time and finally
took a chance at In N Out Burger, the only place that only has 1 source
of gluten—the buns. I’m pretty sure we all got glutented, but that
was the chance that we had to take to eat a hot meal!! The grocery
stores had NO GF selections and a health food store that we visited
that claimed they could do GF was sadly ignorant that GF isn’t the same
as Vegetarian. So—my question to you is WHAT do we have to do to
raise awareness for those of us dealing with CD?! WHAT is it going to
take to get the word out in this country that gluten in EVERY SINGLE
FOOD ITEM FROM THE FOOD ITSELF TO ALL SEASONINGS AND OTHER
INGREDIENTS is a BAD thing? WHAT is it going to take to get the
Medical Community to understand that gluten is everywhere making most
people sick? WHY is it so hard to get a definitive diagnosis—even
using the “Gold” Standard of biopsy and blood testing due to high false
negative numbers?? Why is there little to no knowledge or
understanding of gluten intolerance—-or even that there could
possibly be Gluten Spectrum Disorders along the lines of Autism
Spectrum Disorders in which doctors understand that before CD actually
occurs—it can start with gluten intolerance that becomes gradually
worse until the damage of CD is visible?? I am a wife and a mother
who is FED UP with ignorance and silence about CD. I want to help get
the word out, I want to advocate loudly and proudly about this
‘disease’ my family suffers from. We suffer because it is SO hard to
eat out and travel in the USA with a food disease—because American
food is all about gluten. I would like to get the opinion of you that
are working in this field as to how to change this and how to advocate
for something that most people still think is a Mental Illness or
Psychosomatic, especially if we are going to have National Health Care!
Thank you so much for taking the time to read this long letter. As
you can tell, I am frustrated and am looking for answers.

Katie Berry