Pillcam In A Week

[Sandi*]

Both my bloodwork and biopsy were negative for celiac disease (two years ago); however, I can definitely see positive response to diet change. I've been gluten-light for about 3 or 4 months. That is, sometimes I would have a regular cookie (maybe once every two weeks) and I just realized that I've been glutening myself unknowingly all this time. For example, I drink this coffee substitute that I didn't realize that barley malt. I've used cooking sauces that had wheat protein. I know that I have to be more careful.

However, I'm trying to figure out, if in case I do have celiac disease, is this gluten-light diet still enough to show damage that could be detected by the pillcam test? Or would I have to stuff myself with bread for months? I'm still having a lot of symptoms and digestive problems (mainly bloating and constipation, pain, cramps, as well as knee pain). So I figured I might as well take an advantage of the fact that I've been glutening myself and don't start being really strict about the diet until the test is over. It's only a week away so if a little gluten here and there is what it takes to get a diagnosis I can deal with that. Since I never went fully gluten-free for a long enough period of time I should still show damage, right (provided it is celiac disease)?

OK, so just to make sure I've expressed myself well enough, my question is: would my intestines still show damage since I've only been gluten-light but not fully gluten free or would that be enough for them to heal anyway?

TIA!

[moldlady]

Sandi,

How did the pill cam go? Did it show anything?

ML

[Sandi*]

moldlady, it's not for another week (actually more like 10 days, it's on the 8th) and then I assume I will need to get an appointment to actually talk about the results. But I'll post here once I'm all finished!

[moldlady]

Thanks Sandi,

Sorry, I thought I read about this two weeks ago and then I just checked the date of your post. Someone else must have posted something similar. Dah!

I wish we could get test results as fast as food!

I'll be waiting for your report.

ML

[MDRB]

Hi,

Most doctors think that the only way to diagnose celiacs is with an endoscopy.

When I had mine done, I had been gluten lite for about 6 months, as a result my blood tests came back negative. Before the endoscopy, I was told to eat at least one gluten based meal every day for one month otherwise the test would not be conclusive. From what you have said about your symptoms and reaction to the diet it seems likely that you do have celiacs.

Good luck

[ThatlldoGyp]

yes, if you have celiac, your villi would most likely still show damage. I just read a study... endos taken on Catholic celiacs. Villi damage still seen when their only known gluten intake would be the communion wafer once a week, all participants were asymptomatic yet still showed damage enough to be seen with sb biopsy. So, based on that study, then you should be good. Either way, it takes adults 6 months to a year to repair their gut, so damage from before you went gluten-free lite should still be present, add that to additional exposures and you are most likely glutened enough to have damage.

Please talk to your Dr. about this though, your degree of sensitivity is also important, and just because you may not have celiac doesn't mean that you aren't gluten sensitive. Hope you feel better soona and good luck on your pill cam study.

[Sandi*]

Hi,

Most doctors think that the only way to diagnose celiacs is with an endoscopy.

When I had mine done, I had been gluten lite for about 6 months, as a result my blood tests came back negative. Before the endoscopy, I was told to eat at least one gluten based meal every day for one month otherwise the test would not be conclusive. From what you have said about your symptoms and reaction to the diet it seems likely that you do have celiacs.

Good luck

new2celiacs, thanks for the answer. Did you have the endo done yet? Was eating gluten for a month sufficient to get a positive diagnosis?

[Sandi*]

yes, if you have celiac, your villi would most likely still show damage. I just read a study... endos taken on Catholic celiacs. Villi damage still seen when their only known gluten intake would be the communion wafer once a week, all participants were asymptomatic yet still showed damage enough to be seen with sb biopsy. So, based on that study, then you should be good. Either way, it takes adults 6 months to a year to repair their gut, so damage from before you went gluten-free lite should still be present, add that to additional exposures and you are most likely glutened enough to have damage.

Please talk to your Dr. about this though, your degree of sensitivity is also important, and just because you may not have celiac doesn't mean that you aren't gluten sensitive. Hope you feel better soona and good luck on your pill cam study.

Thanks Tha'lldoGyp, you're answer is kind of what I was thinking. I still have symptoms so I don't think I healed by just being gluten light.

My doctor is great when it comes to running tests, etc. but I think she's also very results-oriented. Basically, if I test negative for celiac, then according to her there's no reason not to eat gluten. But I'm really grateful for all the testing I got and I'm just going to listen to my own body. I feel better not eating gluten so I definitely believe that I'm at least gluten sensitive if not celiac and won't go back to eating it .

[MDRB]

new2celiacs, thanks for the answer. Did you have the endo done yet? Was eating gluten for a month sufficient to get a positive diagnosis?

Yep, I had my endoscopy a while ago and it showed enough damage to the villi for a diagnosis. My understanding is that there are other things that can cause slight villi damage and that the doctor might want to do another endoscopy after a few months gluten free to check that the damage is healing with the new diet.

Having said all this, If I knew how sick the gluten was going to make me, I would not have gone back on it for those for weeks. They were the worst 4 weeks of my life, I was SO sick I could barely get out of bed.

The only reason to get a diagnosis is if you are not sure if you feel better without the gluten. Otherwise its just not worth the time feeling sick.

Good luck!

[Sandi*]

I'm sorry those 4 weeks were so horrible for you! But at least you have a proper diagnosis now.

As for me I don't think I'd go back to gluten eating for the endoscopy since I already had one and it was negative. I'm just hoping that the camera might find something further down there that the endo could have missed. I'm still so sick that I think if I do have celiac disease then the damage will still be there. But if not, I don't care, I'll just listen to my body and see how I respond to a full removal of gluten. Thank you for your help!

[Lisa]

This is a recently released study done by the Mayo:

Given Imaging Announces New Mayo Clinic Study Concludes Celiac Disease May Be More Severe Than Symptoms Indicate for Some Patients

PillCam

[Sandi*]

Very informative, thank you!

[Sandi*]

So the test did not confirm celiac disease. The only thing that was found were several intramucosal lesions. To be honest I'm not exactly sure what they are. I have a colonoscopy and my doc wants to take a biopsy of these lesions.