<<Disclaimer: Verify this information before applying it to your situation.>>
Hello everyone,
In view of recent question regarding celiac numbers posted by Sandy
and those that have preceeded it regarding letters to manufacturers I'm
willing to share with the list my own information, gathered from my own
research. I am personally confident in these numbers that I use when writing
to manufacturers. Others may not be and all must use their own best
judgement. Because I am not a medical or science professional I don't
consider myself at any risk using these numbers freely when communicating
with manufacturers. In fact, I personally feel they are likely to be
understated.
We are a melting pot here in the United States and I personally see
no reason to consider that US numbers would be any lower than those from the
countries our ancestors are from. In my way of thinking the predisposition
genetics are obvious. It is no secret to any of us that many other countries
do a better job at screening for CD/DH than we presently do in the US. This
is getting better due to the current research being done and also because of
our wonderful non-profit organizations whose primary focus is increasing
awarenesss.
The following is an example of copy a letter I use when dealing with
a stubborn company who is not willing to be forthright about there policies
regarding gluten-free products. Anyone may glean from it what they wish or
discard at their own discretion. I am an expert in nothing at all only one
person with CD/DH so I don't see how the numbers I refer to could possibly
get me in "hot water" even if other's do disagree with them. As a layman I
BELIEVE these numbers to be correct to the best of my personal knowledge. If
anyone thinks I'm sticking my neck out somehow... please let me know your
thoughts and I may reconsider my own personal approach.
------------------------------
Brachs Products, attn: Consumer Relations and/or Food Chemistry Division
Dear Consumer Relations,
I have a condition called Celiac disease. It is completely
manageable as long as I don't ingest the offending glutens which cause
illness, even in small amounts. Celiac disease (CD) is not an allergy but a
complete intolerance to the specific gluten's which are only found in wheat,
rye, barley, (which includes their derivatives) and possibly oats due chiefly
to the high possibility of cross-contamination with those grains considered
'toxic' to those with CD. Although corn and rice also contain gluten of a
sort, they are entirely different than the alcohol-soluable proteins (called
prolamins) which cause difficulties for the increasing number of people with
celiac disease. and/or CD's related skin disorder, dermatitis herpetiformis
(DH). Current statistics show the number of people presently in the United
States with one or both of these conditions are at least 1.3 million, some of
whom have yet to be diagnosed. As you quite probably know "wheat and related
grains" are considered one of the top allergens today; in part due to our
cd/dh conditions but also because of the many other true 'allergic' reactions
and common other common sensitivity reactions which these grains can invoke.
When I personally accidently ingest gluten it is usually because
there is no clear statement on the ingredient listing of manufactured
products; the gluten content being "hidden" within some additive ie:
thickeners, binders, flavorings, or within a food factory's manufacturing
process itself; in which case the offending ingredient may not be listed at
all (ie: conveyor belts, gloves being dusted with flour in order to make food
items not stick). When this happens I get sick with a variety of symptoms.
If you aren't sure whether your products contain gluten ***could you
please forward this email to one of your food chemists*** as I'm sure they
would have a good understanding of the only types of gluten protein fractions
which are of concern to those with my condition (ie: the prolamins: gliadin,
secalin, hordein & possibly avenin).
Certainly there must be some of the products within your vast line of
confections which do not have gluten or derivatives thereof added to them
during the manufacturing process. Before I knew I had this condition Brachs
was one of my favorite candy companies and I miss being able to eat your
delicious products.
I would like to know if you have a "gluten-free product listing".
Many other candy and food manufacturers have recognized the growing demand
and provide such a listing. If so, please send it to me and I will be happy
to share it with my local support group at our February meeting. If not, we
are an ever-growing number of people due to raised awareness and resulting
better diagnostic methods here in the US and we would appreciate your help in
developing such a listing for us. What once looked like a condition that
affected only 1 in 1,400 to 2,000 people in the US, is now considered to be
much closer to the European statistics of 1 in 250 and possibly even as many
as 1 in 90 have this condition. I would love to be able to consume at least
some of your products with the same enjoyment as others do and am confident
other celiac's and people who must adhere to a gluten-free diet will as well.
Your investigation on my behalf will not only help me but also many
others. I will be pleased to share the information which I receive from you
with the over three thousand people who regularity use a particular list
serve (which I also use) and with the non-profit celiac organizations which I
belong to. We are a self educated group by necessity of our personal dietary
restrictions and all work to help each other broaden our food choices. These
organizations are all raising awareness of the celiac condition. When I
receive your response you can count on the fact that 'word of your
gluten-free products' will quickly spread.
I appreciate the time which I anticipate your staff will give the
information outlined and would like to thank you in advance for your thorough
research/attention to my request for a gluten-free product listing. If you
have any questions or need further clarification in order to respond please
do not hesitate to contact me. Please keep in mind that I am not a scientist
nor do I have a medical background, only a good understanding of the CD/DH
condition and the dietary restrictions it creates for me.
Sincerely,
Arletta Johnson
*Support summarization of posts, reply to the SENDER not the Celiac List*
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