I have always been able to eat pretty much anything, so a summer of severe gastrointestinal issues came as a huge shock. Doctors tested me for the usual "bugs," but concluded it was probably one of the "between 3 and 4 thousand viruses we don't test for." In September, I had a colonoscopy and upper endoscopy, which was initially reported as clear. However, when I went back for my follow-up appointment, he mentioned that microscopic examination of samples had revealed the cilia in the lining of my small intestine had atrophied, the sign of celiac disease. I protested that I was no longer having G-I issues. His response was simply "Well, see me if you are having any problems." End of visit.
I had heard of celiac disease, but had never known anyone who had it. (One out of every 133 people in the U.S. have it.) From what I have since read, it's obvious the gastroenterologist really had no real experience with it either. He seemed to think that as long as I was not having G-I distress it was not much of an issue. The nurse for the internal medicine doctor who had referred me to the gastroenterologist suggested a gluten-free diet, but gave me incorrect information about what I could not eat.
Since then I have learned that celiac disease is regarded as very under-diagnosed (some estimate that 95% of people who have it don't know) and that "silent" celiac disease is indeed serious, even when there are no or few digestive issues. For people like me the only noticeable symptoms may be arthritis and major fatigue. The damage to the intestine means I do not absorb nutrients from food - which can result in severe osteoporosis, liver damage and even cancer. My best strategy is to eat a totally gluten-free diet for the rest of my life. That means nothing made with wheat, barley or rye. And that means no wheaten hosts for Communion.
I was certainly aware that the USCCB has a statement about low-gluten hosts, but never thought it would apply to me. After a few weeks when the communion host was the only wheat I knowingly ingested - and a tell-tale reactive rash - I made the difficult decision to deal with it. As a diocesan employee, I frequently receive at Masses with our bishop, so I first consulted our Office for Divine Worship. I was told I needed to purchase my own hosts and pyx and bring them to each Mass. So I ordered the hosts made by the Benedictine Sisters of Perpetual Adoration and an inexpensive starter pyx.
- I have to remember to load my pyx and bring it with me to Mass. (The hosts need to be stored frozen because the lack of gluten means they go stale very quickly, so I can't just carry around a "spare" at all times.)
- At my parish, my pastor has been very good about it. He hands me my pyx, with the usual words "The Body of Christ." Since I am the only one doing this at the moment, communication has not been good. Other priests, communion ministers and deacons are confused and reluctant. I have sometimes had to ask for the pyx to be brought from the altar and usually they had it to me in silence. One priest insists I should just go up and take it if he forgets.
- The first time I received the special host, it completely stuck to the roof of my mouth. Since I was the cantor, that made singing the communion song a bit of a challenge.
- When I am handed the closed pyx, I have to open it and leverage the extremely thin wafer out with a fingernail. Sometimes it's a struggle.
- At each of the diocesan employee liturgies something different has happened. First, the bishop placed the open pyx in the ciborium with the other hosts and offered me my host in the normal way. Next time, the deacon came down separately and handed me my host. I don't know what to expect next.
- I attended a funeral at a local parish for a priest where there were many concelebrants - and three bishops. It was not my home parish, so I did not feel comfortable presenting my pyx at the altar. The Precious Blood was not offered to the congregation, so I did not go up for communion.
Yes, there are logistical issues. I hope these will be worked out over time. What I was not prepared for, however, were my emotional reactions and the distraction that these can cause. These have included general sadness that this has to happen at all, uncertainty about procedure, fear that I will forget to bring a host with me, worry about whether my pyx will actually be on the altar at the Consecration, fear of causing a fuss or disruption to the communion line, reluctance to make an issue at an unfamiliar site or with new people, and sorrow when I am unable to receive.
I realize that my experience is not as difficult as it must be for people who have a severe reaction to even the tiniest amount of gluten. (There is some discussion in the Catholic celiac community about whether even the low-gluten hosts are safe.) However, I am a highly-motivated, high-functioning, liturgically knowledgeable person. I already knew there were low-gluten hosts. I can only wonder how many people have stopped receiving communion or have stopped going to Mass altogether because of celiac disease.
For me, this has and will continue to be a journey. It has resulted in my realizing just how important the Eucharist is in my life. I will struggle through this - because I have to, and because I have the right to receive the Body of Christ, even when it is not in the same way as the rest of the community.