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Anemia,then Scoped,path Report - Need Help

LauraD

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LauraD Newbie
LauraD
Posted

Hi,

3 months ago I was dx'd with severe anemia. Put on iron supplements. Saw my GI doc and scheduled an EGD and colonoscopy to see if my anemia had any GI connection (personally I thought my anemia was menstrual related). Anyways, got a call from GI nurse and they said I needed a follow-up. She couldn't translate the path report and I can't see doc until this Tuesday Aug 29th so I went down and got a copy of path report.

It says: "Although the villous architecture appears rather unremarkable, the presence of marked intraepithelial lymphocytosis within the villous surface epithelium is suggestive of gluten-sensitive enteropathy or other immune-mediated disorders. Clinical and serologic correlation recommended"

So it kinda says it could be Celiac - right? Or is it saying it IS Celiac based on pathology of small intestine damage. It's pretty confusing and shocking to me because I wasn't expecting that they'd find anything and now that they have, what's next. I guess blood tests. Also what could "other immune-mediated disorders" be - Crohn's, etc???

Any ideas? input appreciated

Laura

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tiffjake Enthusiast
tiffjake
Posted

Hi Laura! Welcome to the board!

I think, and I am no doc, that it does say you have evidence of Celiac (gluten-sensitive enteropathy). But it also says that it could be something else (like you suggested, Crohns, etc). Have you had blood work done? The recomendation for "serologic correlation" sounds like a recomendation for blood work (the celiac blood panel).

Be careful, because if your doctor is going to order bloodwork, you DO NOT want to go gluten-free before the blood-draw. Even a week without gluten can give a false negative blood test. On the plus side, you have had the hardest part of the "testing" than many people deciede not to have, because they are so ready to get off of the gluten.

Sounds like you need a simple blood test to confirm Celiac (OR to rule it out and lead your doc to something else, like Crohns). But the biopsy is huge, and sounds like a "YES" to me. If I were you, I would make some mental notes about your health and how you feel (if there are symptoms for you, and for some people, there are not) when you eat gluten filled foods.

Do you have to run to the bathroom? Do you get headaches? Do you notice something different? I would make sure to share this with your doc (thus the report's recomended "clinical" correlation.) Be ready to answer those questions if your doc asks them.

Hope that helps! I don't know if you WANTED to hear that you have Celiac disease, or if you are totally bummed, but if you have been sick your whole life, hopefully with this new information, you will start to feel better and healthier!

LauraD Newbie
LauraD
Posted
  • Author

In terms of symptoms, that's the weird thing - I don't feel like I've really had any but maybe each time I thought I had a stomach bug it was actually a reaction to gluten? I do get headaches quite a bit and I always seem to have diarrhea right before my period starts. I've been attributing most of my odd feelings to being 41 now and thought that maybe perimenopause was coming. What other symptoms should I be noting. In terms of elimination I seem to either be diarrhea or constipation (usually the latter one). They did also say I had gastric polyps that were benign.

I have to be careful because I am a 10 year breast cancer survivor so I know that I have an increased risk for other cancers so I REALLY want to know what my body is doing so I can hopefully fix it nutritionally. I also have the Lap-Band (got 3 years ago) and have lost 80 lbs because I was obese. That has made me feel much better overall but now with this I'm wondering if the lap-band surgery "activated something". It is the Band and not the gastric bypass. I didn't want anyone changing and rerouting things so I just have the adjustable band. If it needs to come out, they can do that.

Laura

Hi Laura! Welcome to the board!

I think, and I am no doc, that it does say you have evidence of Celiac (gluten-sensitive enteropathy). But it also says that it could be something else (like you suggested, Crohns, etc). Have you had blood work done? The recomendation for "serologic correlation" sounds like a recomendation for blood work (the celiac blood panel).

Be careful, because if your doctor is going to order bloodwork, you DO NOT want to go gluten-free before the blood-draw. Even a week without gluten can give a false negative blood test. On the plus side, you have had the hardest part of the "testing" than many people deciede not to have, because they are so ready to get off of the gluten.

Sounds like you need a simple blood test to confirm Celiac (OR to rule it out and lead your doc to something else, like Crohns). But the biopsy is huge, and sounds like a "YES" to me. If I were you, I would make some mental notes about your health and how you feel (if there are symptoms for you, and for some people, there are not) when you eat gluten filled foods.

Do you have to run to the bathroom? Do you get headaches? Do you notice something different? I would make sure to share this with your doc (thus the report's recomended "clinical" correlation.) Be ready to answer those questions if your doc asks them.

Hope that helps! I don't know if you WANTED to hear that you have Celiac disease, or if you are totally bummed, but if you have been sick your whole life, hopefully with this new information, you will start to feel better and healthier!

aikiducky Apprentice
aikiducky
Posted

One thing you should know is that blood tests are not reliable in patients who don't have complete villous atrophy (meaning the vili in the intestine are completely gone). In your case since it sounds like you just have the first possible signs of intestinal damage, there's a really big chance your blood work for celiac will come back negative.

There's a doctor in Holland (Chris Mulder) who wrote about it, I can't find the article right now so I put the name here in case someone else does. But basically the less damage you have, the less likely the blood tests are going to be positive. So at this point it's really hard to get any evidence of celiac for you.

The tricky thing is that if you indeed have celiac, the damage will continue to get worse, and eventually it will be bad enough to show clearly in tests. Only, at that point you might be really sick already, and have a hard time recovering.

I don't want to tell you what to do... but I thought this was something you should be aware of.

Pauliina

chrissy Collaborator
chrissy
Posted

one of my daughter's biopsies showed and increase in intraepithelia lymphocytes, also. one of the other girls had a negative biopsy, and we didn't even scope the youngest one. they all had positive TTg tests which have gone down now that they are gluten free. one of them was fed gluten when we were not away of it and her TTg levels went really high after already getting almost down to normal.

your biopsy sounds suspicious to me because of our experience. have you had a TTg test run?

LauraD Newbie
LauraD
Posted
  • Author

No I haven't had any bloodwork done yet. I see the GI doc tomorrow to discuss the path report so I'm very curious to see what he says. Thanks

one of my daughter's biopsies showed and increase in intraepithelia lymphocytes, also. one of the other girls had a negative biopsy, and we didn't even scope the youngest one. they all had positive TTg tests which have gone down now that they are gluten free. one of them was fed gluten when we were not away of it and her TTg levels went really high after already getting almost down to normal.

your biopsy sounds suspicious to me because of our experience. have you had a TTg test run?

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