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Hi all, Here was my original question to the listserv:

I have a question my doctor cannot answer and I haven't found in the research I have done.  I have read that celiacs should heal (our villi) in approximately 6 weeks or so.  My question is: once we have healed what happens after we accidently ingest gluten?  If it is just a small amount (I'm not talking about eating a whole loaf of bread) does it destroy all the villi again?  If so, does it take another 6 weeks or so to heal after each accidental ingestion?

I received many replies and many requests to please summarize the responses.  I want to thank everyone who took the time to answer my questions.  Here is what I learned:

First, many people noted that the amount of time it takes for a celiac to heal after beginning the gf diet can vary tremendously.  The concensus seems to be that it will take longer to heal if you are older at the time of disgnosis and if the disease has been active for a long time before beginning the gf - resulting in more damage.  

Second, concerning what happens after accidental ingestion .... I had a lot of different responses.  One insightful person said that the gluten triggers the anitbodies.  It is the antibodies that damage the small intenstines (villi).  He said that it depends on the individual on how much gluten they can ingest before triggering the antibodies and how quickly those antibodies, once trggered, take to process out of our bodies.

Most people agreed that with each subsequent ingestion, accidental or otherwise, we are putting our bodies at risk for further irritation - and the more episodes of irritation, the greater our likelihood of being striken with any number of ailments associated with untreated CD.  Most people also agreed that every celiac is different, so determining how much damage is caused by small, infrequent, accidental ingestions is difficult.  Listen to your body and just be as careful as possible to avoid all gluten.

Other people warned me of the dangers of triggering Refractory Sprue.  Refractory Sprue crops up when a person with CD continues to ingest gluten.  After repeated gluten exposure, the gf diet no longer works to protect the person from the damage of CD.  Drug therapies may be attempted, but most people who emailed me about Refractory Sprue agreed there is little hope of recovery from Refractory Sprue.  Please note that I have not researched this topic - I'm just reporting what I was told from our list-mates. 

After learning all this, I emailed with two listmates who both have years of experience dealing with CD and a gf diet.  Thanks so much to Jim and Mitzi for further discussing these issues with me.  I asked Jim and Mitzi how they handle dining out.  I explained that I want to be as careful as possible - but I would also like to (very occassionally) eat out.  How are issues of cross-contaminated issues handled in restaurants?  I understand that I can order gf foods in restaurants and explain all of strick dietary needs ... but how can I be sure they understand or even care?  How do I know the kitchen staff understands and will care?

I was told that I should give the waitress/waiter my dining card and ask that it be shown to the kitchen staff.  Also, ask for the manager if you feel the staff is not taking you seriously.  Another tip is to explain that I will become immediately sick and an ambulance may have to be called to the restaurant - most restaurants don't want that kind of attention and may therefore be more helpful. But, in the end, I was told that we do have to trust at some point.  Basically, do all I can, but at some point know there is nothing more I can do and hope that it works out.  A lot of celiacs only infrquently eat out because of these issues. They also suggested ordering a plain salad if you are uncomfortable with the restaurant - better safe than sorry. 

That's it, folks.  If I receive many more emails about this with different info, I will happily summarize those too - I know a lot of people are interested in this topic.  Thanks again,
Lori

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