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Silent Celiac
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Hi all,

In trying to determine the cause of a slightly elevated liver enzyme 18 months ago, I discovered I was a celiac. I had not experienced any symptoms to that point and the biopsy showed white blood cells in the area but no damage to the villi. I suspect I caught it very early.

As my wife is slightly gluten intolerent, we went all out eating gluten free and are ridiculously careful about cross contamination, especially considering I wouldn't know if I was contaminated.

In terms of cheating on my diet, given the condition of my villi and lack of symptoms, I set the bar very high. I have only cheated the day after kidney stone surgery (I suspect some continuation with a snack I was craving) and while on vacation (two day period and only for a couple of meals.). Otherwise, I will drive 50 miles for a gluten free meal over risking it.

I plan to be vacationing out of the country for two weeks this month and plan to relax my diet somewhat out of necessity. I recognize many of you see this as poisoning and could never do so yourselves, but my shoutout question is how much long term damage could inconceivably do with mild gluten exposure over a two week period. We plan to home cook most of our meals but it will be much more difficult to be as careful as we are used to being.

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I was diagnosed as a silent celiac and travel internationally regularly. I would never, ever, EVER cheat, even on vacation. You can still do serious internal damage even if it does not manifest in GI symptoms. It is sooooooooo not worth the risk. Not only that but many people's symptoms grow increasingly worse the longer they are off gluten. Guess what? In the 3.5 years since my diagnosis I have been accidentally glutened about 5 times. Last time was several months ago and I got incredibly ill. We are going to Italy and Croatia next week again and cheating would not even enter my mind. Think of your future health and the fact that ingesting gluten can also trigger auto-immune conditions. Not good.

So, go and enjoy your vacation without even considering cheating. It can be done with research and preparation. Where are you going?

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Think of it this way. A leading celiac specialist in Canada said at a lecture it takes the equivalent of the quantity of 1/70th of one peanut to cause damage. Not a lot.

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As an aside, I was positively glutened once at work.  A co-worker decided to use the coffee strainer for her pasta, believe it or not.  I cheated for a couple of meals last October over a 48 hour time period while on vacation, and ate a snack that possibly could have been contaminated last month after a surgery.  Other than that, I'm incredibly diligent about it, but in each event, I never felt sick.  I take what you say very seriously.  I treat it that if you're going to cheat a little bit, you're doing as much damage as if you ate anything in the world you wanted.  

 

I guess what I don't hear discussed often and was looking for input on was this.  For a person with no detectable villi damage who is diagnosed celiac presumably in the very early stages, who maintains a strict gluten free diet and is glutened for brief, isolated periods with no manifestations who then resumes a strict gluten free diet for extended periods, what is the likelihood for cumulative, non-reversible damage?  I have to imagine that in the past eighteen months have consumed less gluten than I would have should my original diagnosis had been made a day later.

 

I'm going to London and Wales.  We're renting an apartment so I have every hope that many of our meals will be as gluten free as possible.  (I can't guarantee how safe the pots and pans are...)  There just may be isolated periods where I want to sample something.

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Well if you have celiac and no damage to your villi , wouldn't you want to keep it that way? Every time you eat some Gluten your risking your health.  Do you have a test done every time you eat gluten to see if there is damage? That is like crazy talk!! The risk you take is crazy!! Sounds like your mind is set that you will taste stuff and cook on stuff that may be contaminated ... but you can always ask about gluten free meals at restaurants. I just don't understand this kind of stuff. It is way beyond my thinking capability. Hope you enjoy your trip. :) I have always wanted to go to England :) 

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Well if you have celiac and no damage to your villi , wouldn't you want to keep it that way? Every time you eat some Gluten your risking your health.  Do you have a test done every time you eat gluten to see if there is damage? That is like crazy talk!! The risk you take is crazy!! Sounds like your mind is set that you will taste stuff and cook on stuff that may be contaminated ... but you can always ask about gluten free meals at restaurants. I just don't understand this kind of stuff. It is way beyond my thinking capability. Hope you enjoy your trip. :) I have always wanted to go to England :)

 

That was the question i was looking for feedback on.  I had been eating gluten every day for years and years and stopped when I had no villi damage.  Aside from some very infrequent contamination, I've been very diligent.  What I was throwing out there was how much non-reversible damage could be done with brief contamination?  Put another way, had I been diagnosed a week later initially, would permanent damage had been done?  My mind's not made up.

 

And thank you!  Looking forward to it!

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That was the question i was looking for feedback on.  I had been eating gluten every day for years and years and stopped when I had no villi damage.  Aside from some very infrequent contamination, I've been very diligent.  What I was throwing out there was how much non-reversible damage could be done with brief contamination?  Put another way, had I been diagnosed a week later initially, would permanent damage had been done?  My mind's not made up.

 

And thank you!  Looking forward to it!

The thing is , is everyone reacts differently. You having a lil bit of Gluten, may or may not damage your villi, One day it might just start all at once. You just don't know when, if ,where and why. I suppose to you, it seems like it won't do much damage because you don't have symptoms. But to us that have devastating symptoms it is hard to comprehend. I hope you don't get any damage. But if you don't get checked on a regular basis you really won't know if you will have damage or forbid lasting damage. I really do wish you luck :) 

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  • Blood test:  mildly celiac
  • Biopsy (seven weeks later):  Marsh Stage IIIB (moderate to severe damage), diagnosed in March 2013
  • No intestinal symptoms
  • Low Ferritin
  • Hashimoto's Thyroiditis (dx over 15 years ago and have been on treatment since then)
  • Broken vertabrae doing NOTHING 13 weeks ago!

 

I didn't have visible symptoms.  Just went for routine colonscopy because I'm over fifty (and by golly, I'm paying through the nose for my health insurance (self-employed).  I don't think anyone can answer your question about possible permanent damage.  And remember, you really don't know if you have villi damage.  They only take a small amount of tissue during a biopsy and the wall surface of your intestines is like the area of a tennis court.   I wouldn't do it.  

 

That's the lecture.   I'm curious too,  but not willing to take the risk.   So, can you let us know how it all pans out?  

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I love England (been there six times) but am smitten with Wales. What a gobsmackingly stunning country!! Enjoy your trip.

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Very good point regarding not knowing the true state of damage! Any recommendations for restaurants while I'm there? :-)

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Hi Chuck,

 

None of us can give a real good prediction of what will happen if you get contaminated.  But, people do go on gluten challenges sometimes during the diagnosis process for 3 months.  I don't think they usually die from those gluten challenges.  Sometimes they do report slow recovery (months) and sometimes they report ongoing problems too.  There is even a small possibility of developing a new autoimmune condition.  Predicting how one individuals body will react is kinda impossible.  Many people have problems adjusting to the gluten-free diet at first.  They make mistakes.  The bigger problem usually is ongoing gluten in the body, which does damage for a prolonged period of time.  That leads to lots of health issues.  Possibly even cancer in rare cases.  Most likely you won't suffer any long term problems from a brief exposure to gluten for a couple weeks.  We just can't guarantee that.  And of course your body will react, even if you don''t feel symptoms.  It's kinda like going to Las Vegas I suppose.  You'll probably be just fine IMHO.  There is also the possibility that you will become a non-silent celiac at some point too.

 

It's really good to limit the amount of exposure to gluten and therefore the amount of damage to your body if you can.  I hope you enjoy your trip! :)

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