When I started this page back in 2012, about two years after my celiac diagnosis, I followed several other celiac webpages/blogs and was an active participant in the online forums. Being able to interact with other people who were medically gluten-free, like me, and reading about their experiences helped me to feel so much less alone. With time, though, I have had to stop participating in celiac forums and leaving comments on others’ pages. Part of this is due to time constraints, but a lot of my lack of participation is due to people complaining and criticizing each other online. If we, as members of the celiac community, dedicated our efforts to educating and supporting each other as opposed to whining and feeling sorry for ourselves, I think we could do an amazing job of spreading celiac knowledge.
There are so many fascinating things about celiac disease that I did not learn until after my own diagnosis, such as the following:
Celiac disease can develop at any time during life. A person can test negative at age 55 but then have full-blown celiac disease at age 60. You can be diagnosed when you are 9 months old or 99 years old.
You can have undiagnosed celiac disease and be overweight or obese. People of any body shape can develop it. Most adults are not extremely thin at the time of diagnosis, contrary to popular belief.
Celiac disease can affect just about any part of the body, including the brain, reproductive system, bones, liver, joints, skin, and teeth. Many people with celiac disease do not have digestive symptoms, instead suffering from symptoms like arthritis, nerve inflammation (neuropathy), headaches, difficulty getting pregnant, and elevated liver enzymes. It can take years, and even decades, to get a firm diagnosis (I personally experienced this).
Once a person has been on the GF diet for > 2 weeks, celiac antibody blood testing is pretty much useless—patients need to be eating gluten on a regular basis in order for celiac antibodies to be detected in blood. The same goes for endoscopy and small bowel biopsy.
When a patient is diagnosed with celiac disease, all first degree family members (siblings, parents, and/or children) should also be screened, as they are at a much higher risk than the general population. Second degree relatives (aunts, uncles, cousins and grandparents) should also consider screening.
Many people with celiac disease continue to have symptoms even after months on the GF diet (called non-responsive celiac disease, NRCD). The most common cause of continued symptoms is ongoing gluten exposure, which is often accidental cross-contamination. Many of the current celiac drugs in development are to help to prevent us from experiencing NRCD.
Over-the-counter gluten-digesting enzymes are not safe for those of us with celiac–they do not break down gluten into small enough pieces to not cause an autoimmune reaction.
Lastly, coffee does not cross-react with gluten. If this was the case, based on how much coffee I consume I would be dead, or at least chronically ill with persistently elevated celiac antibodies
I could keep going, but I think you can get the idea…it’s possible that through sharing just a few of these facts that you might help someone realize that they need to be tested for celiac. How cool would that be?
Also, totally random stuff for those of you who are still reading:
-As I posted on my Facebook page, I have recently become a member for the New England Celiac Organization (NECO) and plan to attend some of their meetings in the greater Boston area from time to time. Please email me (email@example.com) if you are interested in attending one of the NECO meetings together.
-I recently learned that Melinda Dennis, a well-known celiac dietician and co-author of the book “Real Life with Celiac Disease,” will be holding celiac/GF wellness retreats this fall and winter in NH and CA. You can check out her website, www.deletethewheat.com, for more information. I am seriously considering registering for the one in Santa Barbara, especially if this winter is as awful as last winter.
-Lastly, I think I’ve only had one person tell me that celiac disease “sucks” over the last few weeks since I moved. I think this is a record since I was diagnosed
Thanks for reading!