If you have been recently diagnosed, you should know that:
- Our
group provides a new patient packet. Click here
to request a copy by email.
- Columbia
University Celiac Disease Center has recommendations on the medical
management of Celiac Disease.
- University
of Chicago provides information about the follow-up
testing you should have.
-
The book "Celiac
Disease: a hidden epidemic" is an excellent resource.
- If
you have recently been diagnosed with a biopsy,
the University of Chicago Celiac Disease Program will send a gift
basket full of gluten-free foods and information. This gift basket
is intended to help people who are just learning the diet, or
those who are having trouble adjusting to the diet, for up to
one year after diagnosis. To receive a basket, call their information
line at: (773) 702-7593. This program and other services offered
at the University of Chicago are described here.
- It's
a good idea to request a copy of your blood test and biopsy results
for your records. You may have received a letter summarizing these
results, but you can also ask for a copy of the actual lab reports.
- Gluten
is often found in over-the-counter drugs. It is less common but
still sometimes found in prescription drugs as well. You can find
a list of gluten-free medications at glutenfreedrugs.com
and/or ask your pharmacist to check with the manufacturer before
buying a medication.
- If
you continue to have digestive symptoms on the GF diet, you may
have lactose intolerance, which is quite common in people with
CD. Fortunately, this usually improves after about 6 months on
the diet. Until then, you can avoid dairy or try lactase supplements.
- If
you are Catholic, the church requires at least some wheat in the
host. A very low-gluten host has been developed that may be suitable
for you to use. For more information, read these: website
article
- This
Food
Labeling Fact Sheet tells how to identify wheat and some barley
ingredients on the new food labels. It does not address the
possibility of cross-contamination. For more information on cross-contamination,
go to Contamination
Issues, and read Best Bets for Avoiding
Cross-contamination.
- If
you continue to feel bad on the GF diet, further medical evaluation
may be needed. The following page has links to information that
might be helpful: GF
and not feeling well
- If
you do not have symptoms from gluten ingestion, please
read
- There
is a Listserv for Celiac Disease. To join the list or read the
archives, click here.
- You
can call manufacturers and ask about the risk of cross-contamination.
Most food products have a toll-free number on the label, and the
customer-service representatives are often able to answer this
question.
- A
list of companies that label wheat, rye and barley (not just wheat)
ingredients was compiled by one of our support group members and
can be found here.
- Spelt
is a form of wheat, it does contain gluten, and
is not safe for the gluten-free diet.
- Sprouted
gluten grains do contain partially broken-down
gluten protein which is not safe for the gluten-free diet.
- Celiac
Disease "runs in the family". Celiac specialists recommend
that at least all first-degree relatives of anyone with CD should
also be tested. This includes parents, children, brothers and
sisters. Ideally, second degree relatives should be tested too.
The following is copied from the FAQ for the Warren
Medical Research Center for Celiac Disease:
"If
I have Celiac Disease, what is the chance that my family members
will have Celiac Disease?
Celiac
Disease is a genetic condition, which means that immediate family
members can share the same disease susceptibility genes. The frequency
of Celiac Disease among first degree relatives can be as high as
10-20% compared to the estimated 1% in the general population in
the United States. The frequency among second degree relatives is
somewhat lower, on average being approximately 5%. Given these high
probabilities, we advise the screening of at least first degree
family members for Celiac disease. Serologic testing, and in some
situations genetic screening, are a reasonable initial approach.
If positive, these should be followed up by small intestinal biopsy."
Best
Bets for Avoiding Cross-Contamination:
There
has been considerable effort in the Celiac community to identify
"commercial products" that are safe. However, you should
know that any food processed on any equipment shared with gluten
is at risk to have at least some degree of contamination. Shared
equipment results in gluten contamination, whether in the field,
a manufacturing facility, a restaurant, or a home kitchen. The FDA
prepared a report on the occurrence of cross-contact which you can
read here.
There are many good references to help identify potential contamination
problems in the home, such as Gluten Intolerance Group's Quick
Start Diet Guide.
Non-gluten
grains are often handled in bulk on the same equipment used for
gluten grains. Therefore, special handling is necessary during every
step of growing, harvesting, milling and processing of non-gluten
grains to prevent gluten contamination of grain-based foods. Gluten
Intolerance Group runs a gluten-free certification program, and
in the process of testing they have found two large manufacturers
of rice flour that would not meet the standard for "gluten-free".
You can read their
letter to the FDA which discusses this problem.
Some
commercial products are likely to be truly
gluten-free, not because of any great skill on the part of the manufacturer,
but simply because there is normally no gluten involved in their
processing, such as canned tomato products.
So,
for a truly gluten-free diet (use these tips especially if you
are very sick or very sensitive):
- As
much as possible, stay with home cooking using fresh foods and
minimally-processed foods that were made in a gluten-free environment.
-
Try using starches in frying and baking, such as cornstarch, potato
starch and tapioca starch. Starches have been processed to remove
the protein. Although there may be a small amount of residual
protein, most of that would be, for example, from the corn, potato
or tapioca used to make the starch, and not from any contaminating
wheat. (Note that wheat starch is not considered safe).
A cookbook that uses only starches is "The
Gluten-Free Kitchen" by Robin Ryberg. Also, Chebe
Bread is an excellent line of bread mixes made with tapioca
starch.
- Consider
milling your own flour. This way, you can inspect and wash the
whole grains, greatly reducing the chance of contamination in
your flours.
- When
you buy GF products, buy those that have been
certified gluten-free. The GFCO certifies products to have
less than 10 ppm gluten, which is the best standard available.
-
CSA recommends certain food
manufacturers that have obtained their "Seal of Recognition".
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