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Hi Everyone,

I have been mulling something around in my mind for awhile now and have gone back and read info from Gluten Free Living, comments from Dr. Fasano, and others.  Last week at a support group meeting, the whole thing kind of came to a head in my mind and it was triggered by a discussion about low gluten hosts for communion.  

A question arose about taking communion and a lady spoke up and said that she was using the low gluten hosts and I said that completely GF hosts were available for those who wished to use them.  

I know that the low gluten hosts have been deemed safe by several celiac specialists, etc.  (Please do not take this as a challenge to those who choose to use them or as a religious discussion.)

The point I was trying to make was that if you ingest gluten regularly such as by using the low gluten hosts (and some take communion monthly, some weekly, some on a daily basis), and then have a gluten accident or two, eat out and maybe get a bit of cross contamination, and then the labeling law for gluten free becomes "up to 20 ppm is gluten free" and you eat several foods labeled as such a day, how much gluten are you really getting?    

It is my understanding that there is still no definitive answer as to how much gluten per day is safe for a celiac to consume.  

I did read that Dr. Catassi presented preliminary results of a multicenter study that showed that "A gluten daily dose of 50 mg seems to be able to induce minimal histological changes in most treated celiacs."    What does that actually mean?   Does that mean that less than 50 mg is a safe amount to ingest daily?  How do we know exactly how much is safe?    Wouldn't it take a long term study of celiacs actually eating 50 mg per day of gluten to determine whether it is actually safe or not?  How do we know what health issues lie ahead for those who continue to ingest gluten -- even in small amounts like this?

Just in my own little world, I know a celiac who is permanently being fed thru TPN and cannot eat, one who was partially being fed by TPN and has now passed away, one who developed lymphoma and is in remission but he now has brain stem atrophy, one who passed away 2 weeks ago from malnutrition (result of celiac disease), one who passed away from another type of abdominal cancer, several who have developed multiple autoimmune diseases,  etc.   

Most celiacs that I know have been misdiagnosed for so long that they are/have been REALLY sick and I would think that any amount of gluten would be detrimental to their health.   

My own husband had symptoms for the better part of twenty years before he was diagnosed and we have been strictly GF for nearly eight years now.  He still developed an autoimmune thyroid condition, osteopenia, prostate cancer, a myxoma (tumor) in his heart that required emergency removal, and who knows what is still to come?  Maybe some of those things are not related to celiac disease, but how do we really know?  He was a perfectly healthy man for many years until celiac reared its ugly head.  Then, all of a sudden, he has all kinds of odd health issues.

As for us, we are not willing to take unnecessary risks with his health as he was misdiagnosed for too many years.

The last article that I read from Gluten Free Living regarding the communion hosts was in Volume 9, No. 2, "Low Gluten, no gluten, At what point does it matter?"

It stated that the gluten content of the low gluten wafer was actually 100 ppm.   It further said that Tom Sciacca states that "PPM's are not very meaningful in themselves but provide a gauge or measurement that helps us understand minute amounts."   If that is the case, then what is the sense of the labeling law being set at less than 20 ppm?

My thought is that one should try to be as gluten free as humanly possible because we are going to make mistakes or accidentally get glutened in some unknown way occasionally.   Since no one can say what the "safe" amount of gluten ingestion for a celiac actually is,  I would think that the only safe amount is ZERO!

That may not be possible in the real world, but does it make sense to knowingly ingest any amount of gluten, however minute?

I hope that my ramblings make sense to you as it was difficult to put them all together.  

I would sincerely appreciate your thoughts and look forward to discussion on this subject as we try to determine what gluten free really means and try to influence the FDA in their decision. 

Barbara in SW Missouri

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