Newly-Diagnosed

If you or your child have been recently diagnosed, you should know that:

• Our group provides a new patient packet
• The book "Real Life with Celiac Disease" is highly recommended. If you buy only one book about CD, this should be it!
• 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 it's best to also ask for a copy of the lab results.
• Gluten is often found in over-the-counter drugs. It is much less common in prescription drugs. There is a list of gluten-free medications at glutenfreedrugs.com, a site maintained by a pharmacist. You can also ask your pharmacist to check with the manufacturer before buying a medication. ("I'd like to buy this but I can't unless I know it's gluten-free. Can you check with the manufacturer?")
• 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.
• The Catholic 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: Catholic Celiac Society. Other denominations use rice hosts.
• 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
• There is a national listserv for Celiac Disease. To join the list or read the archives, click here.
• The excess cost of gluten-free food is tax deductible if it exceeds 7.5% of your adjusted gross income (IRS Pub. 502). The amounts that are deductible are listed here. You can also use Flexible Spending Account funds to buy GF food.
• University of Chicago provides information about the follow-up testing you should have (about 2/3 of the way down their webpage).
• Columbia University Celiac Disease Center has recommendations on the medical management of Celiac Disease.
• 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-causing genes. The frequency of celiac disease among siblings, children or parents (first degree relatives) can be as high as 10-15%, compared to the estimated 1% in the general population in the United States. The frequency among more distant relatives is lower. Given these high probabilities, we advise the screening of at least first degree family members for celiac disease. Serologic blood testing, and in some situations genetic testing, 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. To be gluten-free, special handling is needed during every step of growing, harvesting, milling and processing of non-gluten grains. 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.

As an example, 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.

There are many good references to help identify potential contamination problems in the home, such as Gluten Intolerance Group's Quick Start Diet Guide.

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".