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Biopsy Results...symptoms...celiac?

runnergal

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runnergal Newbie
runnergal
Posted

Hi All,

I am new here. New to posting to a forum. Would be grateful for any advice, experience anyone may have!

Hmmm...where to begin.

Have had GI symptoms for years (ie...diarrhea, urgency, nausea etc). In the past years I've mentioned it to my MD (I tend to downplay my symptoms or not mention things and tell myself its nothing) and often I heard that it was likely IBS. In 2008, I ended up seeing a GI MD r/t worsening nausea etc (it ended up being my gallbladder, which was subsequently removed). Anywho, during that whole work up I ended up having an EGD and was told the results were normal. I also mentioned the chronic diarrhea at that time to GI but again was told IBS.

In the years following 2008, my symptoms have gotten worse (diarrhea, urgency) and I, at times, (sorry if TMI) haven't been able to make the restroom in time. I unfortunately know where each and every bathroom is when out and about.

Earlier this year I just felt "off". Was beyond fatigued, joint/boin pain etc. I asked my MD to run some baseline labs just to make sure everything was ok. Of those labs it was found that my iron and ferritin were very low, my HGB is on the border but hanging in there so far. I finally opened up to my MD about how the GI symptoms had worsened and throughout the past few months I've had a slew of labs and tests.

Here's a short synopsis.

CRP- slightly elevated

ESR- slightly elevated

Iron and ferritin- quite low

Vit D- severley low

albumin-normal but about ready to drop into the low range

PTH-high

phosphorus-low

ANA- high

celiac panel- negative

I believe my calcium was off as well, however, at the moment the result escapes my mind. I also had atypical cells on my blood smear and was subsequently sent to a hematoligist who couldn't explain why the atypical cells.

I did have a colonoscopy and another EGD in august. The colonoscopy was normal, but the egd showed increased intraepithelial lymphocytes. (I should also note when all this started and I was referred to GI, I had the provider pull up the pathology report from four years ago and in fact the results were not normal like I was told 4 years ago, that too showed increased IEL's.

I was told it could be early celiac, but I am still in the throws of more tests and appts with specialists (endocrinology and rheumatology) r/t my symptoms and labs. I have no definitive answers at this point about any of this (my symptoms, the biopsy results, my labs being off etc).

At my follow up this past week I was told to go gluten free and see if it helps etc.

My providers have been great and we are still pursuing answers, but it's been a long road, I feel like crud and wonder if anyone else has been in the same boat, espescially with the increased IEL's (no villous atrophy or blunting, etc) and what that meant for you etc?

I'm just tired of feeling like crud and wanting answers and hoping to hear from some of you who've been there before! Any advice and support is welcome. Sorry this is so long winded.

Thanks in advance!

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shadowicewolf Proficient
shadowicewolf
Posted

I delt with similar things for years. It started when i was 12 or so and i'd get hit out of no where with really bad "D" (actually, i might even remember the first time rofl). It got to the point where i'd have to take pepto bismol before i went anywhere just in case. I, like you, also knew where every bathroom was.

Once i went gluten free, it stopped (!!!!!!!!!!) all those years of random major "D" vanished.

I also had gallbladder problems and it was taken out (working at 5% no less).

Only one of my celiac blood tests came back positive, the biopsy was negative as well (mind you it was taken 4 weeks after i went gluten free, so that is probably the reason why), and i've reacted positively toward the diet.

Good luck.

runnergal Newbie
runnergal
Posted
  • Author

Thanks!

It's been such a long road and I'd just really like an answer at this point.

The joint pain has flared again and I'm really hurting, as well as, my appetite is gone again.

I don't know what to think of so many of my labs being off and the increased intraepithelial lymphocytes on my EGD biopsy.

I'm so grateful for advice/support from those reading who have been thru this as well.

Thanks much.

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