It’s 6 a.m. on Saturday morning, I just got off work 4 hours ago and I’m exhausted.
Yet somehow I find myself kneeling over the toilet puking my guts out trying to figure out how the fuck this happened.
Looking back on the last 48 hours, analyzing and reanalyzing every single thing that I ate, but I can’t figure out what the hell it was. With the rest of the day looking grim, I just accept that at some point I was glutened and that now it’s time to recover.
Is this you?
Have you been here before?
Well, you and I aren’t the only ones. Anyone who has ever been diagnosed with Celiac disease can remember a time when they were unexpectedly glutened. It’s a pain in the ass and symptoms can be present for weeks after.
For this reason, Celiac disease is being researched this very second in the effort to find a cure.
Are they searching for a cure in order to appease your addiction to Dunkin Donuts?
They are looking for a cure because a gluten-free diet doesn’t always work.
Symptomatic Celiac Disease
Among Celiac’s who’ve adopted a Gluten-Free diet, the current scientific literature shows that around 30% of them are still symptomatic, with that number moving to 50% if you include asymptomatic (symptom-free) celiacs with severe intestinal damage.
According to Francisco Leon, Chief Medical Officer of Celimmune, the primary underlying cause of non-responsive celiac disease is a continued exposure to gluten after they adopt a gluten-free diet. In fact, a study at the Beth Israel Deaconess Medical Center found that 36% of patients who were still symptomatic were inadvertently consuming gluten, despite their best efforts not too.
International studies have shown that celiac’s residing in America have a much more difficult time recovering from celiac disease symptoms compared to the rest of the world.
Many suspect the reason for this is the Fast-food culture found in America with nearly 60% of American families eating out at least once a week. With cross-contamination everywhere, American celiac’s cannot help but to consume gluten, even if they are following a strict gluten-free diet.
I guess it's no surprise so many celiacs are still symptomatic if you really think about it. Unfortunately, with Celiac disease even being symptom-free does not mean you are in the clear.
Asymptomatic Celiac Disease
While they may not show symptoms, many celiacs walk around with severe intestinal damage that is unable to repair itself.
A study conducted by the Mayo Clinic in Minnesota in 2010 examined intestinal biopsy records for adults who had been diagnosed with celiac disease.
While 4 out of 5 of those celiacs experienced an improvement or disappearance of symptoms on a gluten-free diet, after 2 years only ⅓ had fully recovered intestinal villi.
Because of this, complications that arise due to Celiac disease are becoming more common and more dangerous.
Refractory Celiac Disease
Refractory Celiac Disease is a complication of Celiac disease where, in addition to the usual symptoms, patients also have a high percentage of white blood cells in the gut. With 1 in 100 Celiac’s diagnosed with Type 1 Refractory Celiac disease, it’s becoming a serious problem.
Untreated, Type 1 refractory celiac disease develops into Type 2 (1 in 200 celiacs), resulting in lymphoma and staggeringly low survival statistics (less that 50% of cases recover).
Why They Won’t Cure Celiac Disease
Developing a cure for a disease is not easy. It takes years, millions of dollars and a stroke of good luck.
When researchers begin to think about how to treat diseases, they begin with the symptoms. After knowing the symptoms, researchers can then determine which part of the body is being affected and how. After knowing that, they can find what is causing that part of the body to react in that specific way, and then you can find what causes the problem.
While we may know that Celiac disease is an autoimmune disease that reacts to the proteins that compose gluten, the symptoms are difficult to read. With over 100 frequently seen symptoms that affect the entire body, it’s no surprise the average diagnosis time for Celiac disease is 4 years.
Because of the variety of symptoms and how they interact on an individual level, it’s no surprise that a cure hasn’t been developed yet.
What to Do
So you must all be feeling pretty shitty right now after struggling day in and out for years to follow a gluten-free diet, only to discover that it may not work quite as well as you’ve been led to believe.
I understand how you feel.
I felt pretty shitty when I first learned this as well.
In fact, I felt so shitty that it led me to over 50 hours of research on how to maximize gastrointestinal health, fix leaking gap junctions in the intestines and get you back to a point where you feel like a regular badass again.
And the best news of all?
I'm going to put it all in a blog coming up next week so that you guys can benefit as well.
See you then!