Newly Diagnosed (2024)

You’re just getting started on your journey to better health as someone newly diagnosed with celiac disease.

Here, you’ll discover what gluten is, how to read labels, risks of cross contamination, and more.

We encourage you to absorb all the resources on our Living Gluten Free pages and on our YouTube Channelto get a full picture of the disease that’s going to shape the rest of your life. Most importantly, sign up today for the Newly Diagnosed Program below. Everything you need to know to manage CD and thrive, in three month’s worth of FREE education sent to your inbox.

We recommend you see a registered dietitian as soon as possible for detailed dietary information, needs assessment and education. The gluten-free diet (GFD) is a diet for life and you should start it as soon as celiac disease is confirmed. The best gold standard test is a small intestinal biopsy showing positive for celiac disease. Blood work can show high markers, but may not be definitive.

Find resources specifically for newly diagnosed children at Growing Up Celiac.

Submitted by a Celiac Canada volunteer.

The Internet is full of information about celiac disease, gluten sensitivity and the gluten-free diet. Not all of this information is valid, useful or accurate. Separating Internet myths from fact is a key piece of being comfortable with eating gluten free.

The quantity of information is staggering and it comes in so many forms – from blog entries to dense scientific articles. On top of sorting through the huge quantity of information, you also have to deal with a very uneven level of quality.

Some of it is sheer speculation without a shred of proof; some is the result of years of painstaking study and research. Some of it comes from people who want you to buy something (or not buy something) and some of it is offered with the best of intentions.

We don’t think a lot of people specifically try to create fear maliciously, but sometimes they repeat information they have heard from other people who have either misunderstood something or who have drawn conclusions that are absolutely unwarranted based on fact.

Here’s an example. “I was sent a newsletter that basically said “there seems to be am Internet controversy about whether enriched rice is safe because there might be gluten in the enrichment coating so I suggest you avoid it”.”

I went looking for the Internet controversy and found one blog post that suggested this might be true, but with no supporting evidence. That same blog post was picked up and reprinted verbatim in about 10 other blogs. Now there were 10 sources that showed up in a source making this allegation, and unless you went look closely like I did, you wouldn’t realize that 9 of the 10 sources were simply repeating the same unsubstantiated claims.

Figuring out whether a particular source is reliable is not an easy thing – it takes detective work. You have to figure out where to look and what clues to look for. You may run into way too much information or not enough at all. The easy way is to just accept whatever you find, but this may not be the best solution.

How do you evaluate information?

First, look at the date of the information. Information that is even a year old is often out of date when it comes to specific product data. An article that said Corn Chex was not gluten free would have been correct in 2008 but by 2009 it was wrong.

Sometimes you can tell how credible a statement by the evidence that is presented to support it.

One of my favorite Internet myths is the rumor is that some tea bags are sealed with a wheat paste. If that was the case, the tea from those bags would not be acceptable for someone who needs to eat gluten free. There are lots of Internet blog posts and email messages and web sites that repeat the myth, but the next sentence is virtually always something like “I called company A and company B and company C and they told me they don’t use wheat paste to seal their tea bags”. I have yet to find someone who has found a company that actually does this. “But it might be true” is usually the final sentence.

Hmmm. Doesn’t sound there is a lot of credibility to this myth.

I took it further and looked for information on how tea bags are actually sealed. I found some industry pages and some companies that make machines that seal tea bags and some tea companies that were trying to debunk the myth about sealing teabags with wheat paste. What did I learn? Tea bags are generally sealed in one of three ways: heat sealed with a bit of plastic, crimped where the top and bottom of the bags are pressed really hard together, or folded and stapled. When I pushed really hard at one person who was making a tea bag claim, they sent me a notice that a “food grade” glue had been approved by the World Health Organization for use in manufacturing tea bags. No information about the ingredients, nothing that even hinted at wheat. From this, they justified spreading the information that this was something people should worry about.

Does this mean that all tea is gluten-safe? No. Some herbal or flavored teas contain barley malt, but black, green, oolong, and white tea are all naturally gluten free and grow in areas where gluten grains do not grow.

If you have time and a detective bent, do your research. When you read a new “fact”, make sure you check the credibility of the information and the source before you pass it on or change your behavior.

If you don’t have the time for this, join a large national support group and read the information they send you. They will keep you up to date with the latest finding and will only pass on credible information. Look for a group that has a professional advisory board who vet new finding to make sure that the you hear about important findings but don’t get overwhelmed with rumor.

A few people with gluten sensitivity have told me that they are concerned about joining a “celiac” group. They don’t have celiac disease, after all. My answer is that the people with celiac disease are the most sensitive to gluten – even more than those with a wheat allergy. If you follow the advice for gluten that comes from those groups, you will definitely be safe.

Updated May 2020 – submitted by volunteer.