Is it possible for a Celiac to eat gluten with no symptoms?

[Carolyn.D]

My daughter was diagnosed with Celiac via endoscopy/biopsy and had other indicators such as blood counts and vitamin/mineral deficiencies.  At first, it seemed that she was incredibly sensitive to any cross contamination.  Now, several years later and well into recovery, she has gotten accidentally glutened several times with seemingly no adverse effects.  Is that even possible?  Could the initial diagnosis have been incorrect?  Or once the gut has healed, can a Celiac sometimes tolerate occasional exposures better?  Thank you for your insights.

[squirmingitch]

Our reactions to gluten can & do often change over time. Yes, it's possible for her, at this point, to seemingly not react to gluten exposure but that does not mean that damage to the gut is not being done.

It does not sound like the initial dx was incorrect what with blood work/ endoscopic biopsies, vitamin/mineral deficiencies. Has she had blood work since the initial dx? That would indicate if the antibodies have gone down or how much they have gone down. 

[Carolyn.D]

6 hours ago, squirmingitch said:

Our reactions to gluten can & do often change over time. Yes, it's possible for her, at this point, to seemingly not react to gluten exposure but that does not mean that damage to the gut is not being done.

It does not sound like the initial dx was incorrect what with blood work/ endoscopic biopsies, vitamin/mineral deficiencies. Has she had blood work since the initial dx? That would indicate if the antibodies have gone down or how much they have gone down. 

Thank you for your answer.  She has had her blood counts done many times over the years.  Unfortunately, we have no baseline because the first GI doctor never tested her blood for it before she was scoped and diagnosed.  We only did blood tests after we'd already removed gluten for a while.  I believe the counts were elevated then, but we'll never know how high they were at the peak. Many times since then, the tests have been "normal"- as in she has had no exposure to gluten enough to have any measurable reactions.  I know that's good because it says we've gotten the gluten well under control, but "normal" can almost sound to a teen like "doesn't have it."  Couple that with seemingly no problems when food got mixed up at youth camp and suddenly the whole diagnosis is suspect.  I think I've heard of people with Celiac going ahead and eating gluten, and getting away with it... for a while.  I just don't want her to think she doesn't really have it and start eating accordingly and do damage in the process.  I'm trying to talk to her to set her expectations, but I wasn't sure what could really happen after healing for a while either.  I really appreciate your answer.

[squirmingitch]

Oh you're so welcome! Yes, it can be hard with pre-teens or teens when that happens. They always think they're smarter don't they? Well, we did the same to our parents.

Long, long ago, they thought that if you went gluten free for 10 years then you were cured & could eat gluten again but then discovered that is NOT true. Back prior to that, back when they thought it was only a kid disease, they thought you outgrew it. Also, with kids at least, it could go into sort of a remission for a while but it does come back & that "remission" is not a true remission in that damage is still being done to the gut. I know it's hard to get kids to understand that but it's true. Medical studies have proven it. Did you know that there are celiacs who have massive gut damage & yet exhibit zero gut symptoms? It's true! They are called "silent celiacs". We had one woman on here for years & years who had no symptoms at all. Her sister did & got tested & dx'd celiac. So then all first degree relatives should be tested and this woman, being a sister, got tested. She was off the charts & when they did her endoscopy, she had NO villi left --- NONE. Her gut was as smooth as a baby's bottom and yet she had no gut symptoms. How does this happen? They don't know.

50% of all dx'd celiacs did not present with any GI symptoms.

Here's something you can read on the subject. You may wish to print it out or bookmark & have your daughter read them. it may help her to understand that just b/c she gets away with it, that doesn't really mean she's getting away with it b/c her body is paying a price & that will catch up with her sooner or later.

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