Stem Cells and Celiac

One woman in 2016 and seven people (3 men and 4 women) were cured of their refractory celiac type 2 with stem cells. Yes, 7 people (1 died) have been cured of their celiac disease with stem cells.

However, these people had the worst type of celiac disease that less than 1% of the celiac population will ever have. Also, they were treated with chemotherapy drugs to destroy their immune system before the stem cell transplant. But let’s talk about all of that.

First, let’s define a few terms.

What is refractory celiac type 2? This is the bad one and you don’t want it. Refractory celiac (RCD) is celiac disease that doesn’t heal on a gluten free diet. There are two types of refractory celiac, type 1 and type 2. Refractory celiac type 1 (RCD1) is defined by non-responsiveness to a gluten free diet after six to twelve months and an abnormal type of intraephithelial lymphocytes. The abnormal lymphocytes lead to the dreaded celiac cancer. The lymphocytes are counted and analyzed. If fewer than 20% of the lymphocytes are abnormal, then RCD1 is diagnosed. If more than 20% are abnormal, then type 2 (RCD2) is diagnosed. Patients with RCD2 are more than 50% likely to have the abnormal lymphocytes spread outside the small intestine causing full blown lymphoma. This type of lymphoma has a poor prognosis and high mortality rate.

First study with seven people in 2007. Second study with one woman in 2016. Both sets of patients had Refractory Celiac Disease. Niether set of patients responded to standard RCD therapy of immunosuppressant drugs and/or steroids. Both sets of patients were given chemotherapy drugs to reduce their immune system and prepare their bodies to receive transplanted stem cells. This is common procedure when transplanting stem cells.

Transplanted stem cells can be provided by the patient or from umbilical cord blood. Some say that the patient provided stem cells are already too old and damaged because of the autoimmune disease occurring in the body thus limiting their effectiveness.

Most of the people that were in the larger study were very, very sick with significant other diseases. They got a single dose of stem cells and were supported by paran

The woman in 2016 had been been diagnosed with celiac for 14 years. She was fine for a long time. Five years into diagnosis, she was diagnosed with refractory celiac and took budesonide with good initial results. One day she appeared at the hospital with weight loss, persistent diarrhea, dehydration, and an inability to maintain her electrolyte balance. When they did a biopsy, they realized her celiac had progressed to RCD2. She received 4 stem cell transfusions over the course of a year. At the end of the year, her gut mucosa healed.

At this point, stem cell transplantation is experimental for refractory celiac and probably even a longer way off or maybe not at all for just plain old celiac disease. It is a promising solution, if you come down with RCD2. But that is part of the disease that you don’t want because it is fatal. Granted life is fatal, but this will cut your life short, significantly.

For me, the scarier part is the woman that maintained a gluten free diet for 14 years and still ended up with RCD2. She got good care, followed the rules and still ended up with RCD2. Only 1% – 2% of celiac patients ever end up with RCD1 or RCD2. But it is a good reminder that it can happen to you. We are already 1% of the population with celiac disease so we are unicorns. I don’t want to be a unicorn within a unicorn population.

Also, I know that we all are vigilant about our gluten free diets. Here’s an article posted earlier this year about a daughter watching her mother die from untreated celiac disease. This article resonates with me because while this woman didn’t eat a gluten free diet it is a reminder of the devastating consequences of not maintaining a gluten free diet. An even though we do maintain a gluten free diet, doesn’t mean that we are protected from the ravages of this disease.

Here’s a heavy science article about stem cells and celiac disease.

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