If you have celiac disease in your family, I highly recommend a quick read of the University of Chicago Celiac Disease Center’s annual report – it is a short synopsis of relevant research (free – http://www.cureceliacdisease.org/wp-content/uploads/CdC_ResearchReport_17_WEBSITE.pdf).

What I find particularly interesting is the link between the gene and a virus. This is especially important for families with a history of the disease (it is genetic) with young children, as the research shows that a virus can turn on the disease when the young child is first introduced to gluten.

The second item – talking about the drug montelukast (also known as singular), might be why my diagnosis took so long. I had been taking montelukast for asthma and allergies for years. This likely disguised some of my symptoms.

I also find the last set of questions interesting – in part because I did not have child onset of celiac disease. I expressed my first known symptoms in my late 20s / early 30s. I can look back now and recognize the symptoms, but at the time I had no idea. I had just learned about celiac disease, as my father had just be re-diagnosed. At the time, we had no idea that it was a genetic disease.

I found out I had the celiac gene from 23andme – I had done the genetic test up in Canada, because at the time I did it, the US didn’t allow for the medical information. The test showed that I carry one of the celiac genes. At about the same time, I was diagnosed with Dermatitis herpetiformis (DH) – the skin variant of celiac disease.

There still does not seem to be much awareness for adult onset celiac disease. Much of what is written talks about onset in young children or adolescents (see https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220). This lack of adult onset knowledge reflects on healthcare for adults with celiac disease. My specialist doctors (gastroenterologist and dermatologist) each look at the symptoms of the disease and treating the symptoms – with a gluten-free diet and various creams. No one looks at it holistically. I also do an annual blood test to ensure that the antibodies that attack my system are within the range of what a person without celiac would have. It took more than 6-months on a strict gluten-free diet for my body to get to that ‘normal’ range.

In 2017, I had one or two mild reactions – but nothing severe. I don’t know if this is because I no longer react severely to mild traces of gluten, or if it is that I’ve been successful at avoiding exposure to even mild traces. I’m learning to be a bit more adventurous with my eating – especially when eating out – to the point where I have forgotten to explicitly tell the wait staff when ordering, and having to call them back to tell them. I still mostly pass on foods when I’m visiting with friends, focusing more on visiting than on eating. I have much less anxiety about exposure. I guess you could say that I have learned to live with it – I have adapted.