Had an endoscopy done, turns out the Dr. didn't do the biopsy!

[currier54]

Hi everyone!

I'm not sure if what I'm dealing with is celiac or not, but it seems very likely.  I have had digestive issues for many, many years (constipation, pain, bloating, such that I've resorted to only wearing stretchy skirts as any pressure on my abdomen is uncomfortable.)  Things got worse about 5-6 months ago, such that I finally decided to try to figure it out and talked to my doctor about it.  Based on my symptoms at the time, he referred me to a gastroenterologist for a colonoscopy.  It took a couple of months before I could get in to see him, and in the meantime out of desperation I took matters into my own hands and started keeping track of everything I ate, looking for patterns, and decided to try limiting carbs, and removing wheat and later dairy, to see what happened.  Things improved, and when I tried re-introducing bread one day, I got a migraine (I'm prone to them, and they had basically gone away with my diet change).  When I finally got to see the GI, I mentioned this to him, (and the reflux I'd started experiencing), and he said he wanted to do an upper scope as well, and test for celiac disease, etc.  I agreed, and had become rather suspicious that perhaps it was celiac.  When I mentioned that I hadn't been eating wheat, and asked if this would be a problem, he looked at me quizzically, and said it shouldn't be.  Of course, everything I saw online said the opposite, so with the test being another 2.5 weeks out, I added wheat back in (very carefully, making sure it was the only thing that changed with my diet.)  I felt fine the first day or so, but then the headaches came back, and I went back to looking 4 months pregnant at the end of the day.  Also my sleep tanked (I've dealt with insomnia for 12 years, and that had improved).  

Anyways, I finally had the scopes done, and in my still-groggy state he said to call in a week for the pathology results, and I was given a print-out of the details of with the exam, with pictures.  Nowhere on it was mention of testing for celiac, though he did biopsies of a small spot of gastritis, and the gastroesophogeal junction.  (I immediately went back to avoiding wheat.) When I called to get the results, they said everything was fine, take the PPIs he prescribed, and we'll take another look in 2 years.  I asked about the celiac test, she said, "Let me see...yes, he did the test, and nope. No celiac."  A couple of weeks went by, and I was frustrated and stymied, trying to figure things out as something was definitely still causing me trouble, and decided to see if I could get a copy of the actual pathology report.  They sent it to me, and I looked it over.  And my suspicion was correct:  THERE WERE NO BIOPSIES DONE IN THE DUODENUM!   (frustration and irate ranting ensues)

So, after that I decided to assume that it is celiac and see how it goes, and try not just avoiding wheat, but being hyper-vigilant about all gluten, including cross-contamination.  And I started to see some real improvement.  My constipation is gone (holy cow, is this what normal people experience?!), I've noticed an improvement in my ability to breathe through my nose (which has been a problem since I was a kid), and the awful and embarrassing constantly-peeling lips that I've had since my early teens is clearing up and healing.  My sleep is still wonky, but trending in the right direction I think.  Other big things that seem to fit with celiac would be my really horrible teeth despite taking good care of them (I'm 38 and have two crowns, one root canal, and the back half of my mouth is more filling than tooth at this point), and my struggles with depression and anxiety. 

I've been unsure if I'm willing to go through the testing process again to be certain, but here's the thing:  yesterday I realized the communion wafers I have each Sunday are made from wheat, and I haven't noticed any negative reaction from them specifically.  Looking back at my notes, there doesn't seem to be a correlation.  What in the world?!  So now I'm questioning everything.  I've benefited quite a bit over the last months from this website and have learned a lot from lurking and reading through some discussions, and now I'm wondering if anyone has any thoughts or insights, as I'm kind of at a loss.  Please help!

[trents]

It is also possible that you have non-celiac gluten sensitivity which has many of the same symptoms as celiac but does not damage the villi of the small intestine, although a biopsy would be the only real way to distinguish the two. And the antidote is the same: total avoidance of gluten for life. Yep, your doctors totally botched that one and it is obvious they were quite ignorant concerning celiac disease and how to diagnose it. Your first doctor didn't even know that celiac disease affects the small bowel and not the large bowel as he/she ordered a colonoscopy instead of an endoscopy.

You are probably  vitamin and mineral deficient and have been for a long time. The problem with the teeth screams that. You really should look into some high potency B-vitamin therapy along with D3 and magnesium supplementation. 

[Scott Adams]

Did you do a blood panel for celiac disease? That would be the normal first test done, before an endoscopy. If not it sounds like your doctor really messed up in many ways, especially when he told you that being gluten-free before any tests was ok. If you go the diagnosis route you will need to eat around 2 sliced of bread daily for 6-8 weeks for the blood test, and 2 weeks before an endoscopy.

I agree with @trents that you have, at the very least, gluten sensitivity, and possibly celiac disease. Since you've already noticed a big improvement in your symptoms after going gluten-free it may not be necessary for you to get a formal diagnosis, but the diet can be difficult, so I understand why you may still want to go this route. 

 

 

[currier54]

Thanks for the replies!

When the colonoscopy was ordered, celiac wasn't even on anyone's radar (mine included.)  All of my problems were centered in the lower part of the digestive tract, so it made sense at the time.  And I'll definitely look into the B12!  I started taking a better quality multi than I had been, and it has some in it - what kind of level would be considered "high-potency"?  (I've been supplementing with D3 and magnesium for a little while now, so that part's covered.)

So, non-celiac gluten sensitivity looks the same, but doesn't cause damage?  Does it result in things like vitamin deficiencies too?  It seems like maybe that wouldn't happen unless the villi were affected, or is there another factor that comes into play, like inflammation?

I didn't have the bloodwork done, since it was tacked-on with short notice to a plan that was already in place.  Ideally, yeah, I should have.  Would a diagnosis be able to be made without it?  I'm just thinking, 2 weeks eating bread for an endoscopy would be more do-able than 6-8 weeks for a blood panel.  A big part of it, though, is wondering about my family.  If I do in fact have it, then my kids should be tested.  And my mom has some symptoms that seem to fit with it, too.

[trents]

NCGS (non celiac gluten sensitivity) would not likely cause vitamin and mineral deficiencies in and of itself unless you were pooping everything out before it has been assimilated. 

There is a 44% chance that if you have celiac disease your first degree relatives have it or will develop it at some point.

Edited July 27, 2021 by trents