So, I started thinking about what I would like to see done in celiac research and drug development over the next 5 years. I want a new diagnostic test, better monitoring tests, clearer refractory celiac diagnostic processes, and a cure. Let’s explore each of these!
I want to see a new diagnostic test for celiac disease that doesn’t involve a gluten challenge. I know there is one in the works, but I am impatient. I want people to be diagnosed or not. I want people who want to know for sure but went gluten free prior to knowing they should not for celiac testing to know. I want people to stop saying I started eating gluten free and feel better, so I must be celiac. Celiac is a little bigger than just eating gluten free. Celiac is hard on the body in a variety of ways and knowing for sure is really important.
Also, knowing for sure if someone has celiac or not, alters their medical care and entitles them to certain rights. It means in school that a 504 is created so the children can get the support they need. It means annual return visits to the doctor for vitamin testing, earlier vaccinations for things like pneumonia, and earlier bone density scans. A diagnosis carries weight that an assumption doesn’t. So, I want as many people accurately and completely diagnosed as possible.
We need better monitoring tests. Most of us maintain a gluten free diet because it makes us feel bad. Many of us didn’t really notice how bad we felt until after diagnosis when we removed gluten and realized we could feel good! But the bottom line is – we have to protect our health. Long term, unmanaged celiac disease causes problems with fertility, malnutrition, and can lead to a fatal celiac cancer.
The regrowth of the villi in our small intestine is a testament to our healing and the careful monitoring of our gluten free diet. Unfortunately, the only way to look at the villi is via an invasive procedure. We need some way to know if our villi are healed or not. Because the blood tests for celiac are not a direct representation of the health of our villi. Again, there is a company looking into this, but it needs to be here faster!
Refractory celiac is a serious complication of celiac disease. There are two types of refractory celiac – one that is fatal (Refractory Celiac Type 2) and one that is typically managed with immunosuppressant drugs (Refractory Celiac Type 1 or RCD1). Refractory Celiac Type 2 is exceptionally rare and it is estimated there are fewer than 50 patients in the US currently. RCD1 is a more broad diagnosis. It means that there are more than 20% “abherrant” t-cells in your small intestine. These abherrant t-cells may go on to do more damage, but most often the disease is controlled with steroids or occasionally cancer drugs.
In order to diagnose RCD, an endoscopy must be performed and the t-cells must be evaluated carefully. It is thought that 1 in 50 of the celiac population has RCD1 – which is approximately 35,000 people. I think, and I have no scientific basis for this other than a gut feeling so take it with a grain of salt, there are more people with RCD than are currently being diagnosed. I know that 1, 3, and 5 years after diagnosis my villi continued to show Marsh 3b damage. Since celiac is known to permanently alter the immune system, I’m not sure they will ever heal fully. I think more research needs to be done here – in the RCD world.
Finally, there needs to be a cure. A cure looks to me like I can return to a “normal” diet without damage to my villi or any side effects. It means I can eat freely without concern about whether something will make me sick or not.
Short of that – something to help with cross contamination would be great. It would alleviate the need to be such a PIA about eating out or going to a friends house. I’m not sure where the line between cross contamination and a regular gluten free diet is, but minor exposure – maybe less than 2g of gluten exposure should do it. A normal gluten containing diet contains approximately 8g to 12g of gluten. There is 2g of gluten in a slice of bread. So, up to a slice of bread a day maybe is the cutoff.
I know companies are looking into everything on my wish list. I know I have to be patient. We have come a long way since I was diagnosed in February of 2012 – the explosion of gluten free options at the grocery store and restaurants, new labeling laws that require companies to disclose the top 8 allergens in their food, and a general awareness of the disease. As people with celiac, we have to imagine that in the early 2000’s and before, celiac, in America, was thought to be an extremely rare childhood disease.
We’ve come a long way, but still have a long way to go. I believe we are still early on in the discovery process of celiac disease and I expect that we will learn many more things in the next 5 years of research. So, hold on tight and I look forward to all the new discoveries coming our way!