Unusual test results & Endoscopy rant

[Vanillabean]

16 minutes ago, frieze said:

 

Thanks Frieze, I'm planning on filing a complaint in the next few days. 

[RMJ]

On 4/26/2017 at 8:36 AM, Vanillabean said:

By the way, I got my biopsy pathology report and the doctor took 2 biopsies, not the recommended 4-6. It says no "significant villous blunting not seen." I don't know if I should laugh or cry---so frustrating. 

 

This seems odd.  No SIGNIFICANT villous blunting.  Was there mild villous blunting?  Increased intraepithelial lymphocytes?

[Vanillabean]

1 hour ago, RMJ said:

This seems odd.  No SIGNIFICANT villous blunting.  Was there mild villous blunting?  Increased intraepithelial lymphocytes?

Oh, it definitely struck me as very odd! It also says "no significant increase in intraepithelial lymphocytes". That's their favorite word I guess! 

My blood work pre-biopsy also showed increase lymphocytes and my primary doctor said it usually means increased inflammation.

Doing all the things I can now---filing a complaint, I've emailed my doctors to tell them I'm upset and don't think I received proper care, I'm in the process of trying to see a naturopath that diagnosed a friend of a friend w celiac. I'm going to see if i can get the other blood work done with them---and I've been gluten free for a week and a half! 

 

 

[Jmg]

1 hour ago, Vanillabean said:

I'm going to see if i can get the other blood work done with them---and I've been gluten free for a week and a half! 

If you're going to continue to push for a diagnosis stay on gluten! A break could lead to a false negative.

It's a lot harder to go off it and then go back on... 

 

[gertrude]

I got my biopsy results back today and would love to hear what y'all think because I'm confused.

Just a reminder of where I was at before the biopsy results: I had a positive EMA test, negative ttg test, and positive genetic test for celiac. Today, the doctor told me the biopsy did not show celiac. As a result of the positive genetic test, he said I could still develop celiac in the future but he doesn't think it is celiac right now.

I asked for a copy of my test results. The pathology report says, "Overt diagnostic morphological features of sprue are not seen in this biopsy." But it does say it shows duodenitis, patchy minimal intraepithelial lymphocytosis, and mild villous blunting. To me, that suggests latent or early celiac. Am I right?

Why would these results not be diagnostic of celiac?

[Gemini]

16 minutes ago, gertrude said:

I got my biopsy results back today and would love to hear what y'all think because I'm confused.

Just a reminder of where I was at before the biopsy results: I had a positive EMA test, negative ttg test, and positive genetic test for celiac. Today, the doctor told me the biopsy did not show celiac. As a result of the positive genetic test, he said I could still develop celiac in the future but he doesn't think it is celiac right now.

I asked for a copy of my test results. The pathology report says, "Overt diagnostic morphological features of sprue are not seen in this biopsy." But it does say it shows duodenitis, patchy minimal intraepithelial lymphocytosis, and mild villous blunting. To me, that suggests latent or early celiac. Am I right?

Why would these results not be diagnostic of celiac?

The reason they are not diagnostic (according to the AMA) of Celiac is because you don't have enough severe damage for them to bless you with a diagnosis.  Some doctors will only diagnose Celiac with Marsh III damage...which is pretty much after the villi are gone and you are pretty miserable, if symptomatic.  Let's see.......your duodenum is irritated/inflamed, you have increased, patchy IEL's and some mild blunting of the villi.  Now, this can happen for other reasons BUT you have a positive EMA and symptoms that can be attributed to Celiac. You also have positive genetic results so we know you have the ability to trip for it. I find it very strange that they did the EMA and not the complete panel because the EMA is the most expensive test to do and it is generally only done if the tTg and other antibody testing is positive.

I think it is time for a second opinion with someone more versed in Celiac Disease.  I think you have early Celiac so if you continue to eat gluten, then maybe you will have enough damage down the road for these geniuses to find.    I am not sure I would do that myself because I really hate feeling like crap.  I did  that for too many years and wouldn't wish it on anyone.  I guess they are ignoring the positive EMA???????  Just remember if you want a solid diagnosis, you'll have to keep eating gluten but take it from someone who had Celiac, went to docs for years with no results or even mention of Celiac Disease and ended up with a lot of collateral damage from being undiagnosed for so long.  That biopsy report is telling you that you need to look further into this and not ignore it.....which I don't think you would anyway!

[RMJ]

Here is the report of my biopsy, although my biopsy was after 3 years of trying to be gluten free.  Combined with serology I was diagnosed as celiac.

"Duodenal mucosa with patchy mild increase in intraepithelial lymphocytes and focal mild villous blunting."

[gertrude]

Thanks for your comments, RMJ and Gemini. Very helpful.

I've been pretty disappointed since my appointment on Monday because I really wanted a firm diagnosis. I'm okay eating gluten free on my own, but it would be easier to have family and friends (and other social settings) take it seriously if I could say firmly that I had been diagnosed with celiac. I do plan to eat gluten-free for at least six months and see how that affects my symptoms. I have a couple of symptomatic family members who are now going to be tested, so I am hoping if they are able to get a firm diagnosis, I can feel more confident about a lifelong gluten-free diet.

From the scholarly literature I have been reading, a positive EMA and negative biopsy could still indicate either celiac disease or a "very high" chance of developing celiac later on. So I think a gluten-free diet is my answer. I'm just not certain how vigilant to be about cross-contamination, etc., without a firm diagnosis.

[ironictruth]

On ‎5‎/‎1‎/‎2017 at 4:25 PM, gertrude said:

I got my biopsy results back today and would love to hear what y'all think because I'm confused.

Just a reminder of where I was at before the biopsy results: I had a positive EMA test, negative ttg test, and positive genetic test for celiac. Today, the doctor told me the biopsy did not show celiac. As a result of the positive genetic test, he said I could still develop celiac in the future but he doesn't think it is celiac right now.

I asked for a copy of my test results. The pathology report says, "Overt diagnostic morphological features of sprue are not seen in this biopsy." But it does say it shows duodenitis, patchy minimal intraepithelial lymphocytosis, and mild villous blunting. To me, that suggests latent or early celiac. Am I right?

Why would these results not be diagnostic of celiac?

There are a lot of docs who would put you in the potential celiac range which means, as mentioned above, things could get a lot worse if you continue eating gluten.

Marsh 1 and 2 scoring can absolutely go on to become Marsh 3/4, the official "celiac" diagnosis.  BUT, there are limited studies on this because ultimately, what researcher is going to NOT recommend a gluten free diet to someone with at least one positive blood test and some damage simply so they can track the changes via endoscopy down the road? Tracking folks in your position would prove difficult and unethical to even suggest.

My brother was anemic as a young child which eventually resolved. He went through his adult years just fine. He started experiencing some odd symptoms for a couple of years in his late 30's. It was not until he lost roughly 20 pounds in 4-5 months that they finally referred him to GI. Diagnosis? seronegative celiac.

Increased IEL can occur from a lot of different things, SIBO, aspirin, etc.  It is highly unusual to have a positive EMA and negative TTG but it does occur. And please note, that there are at least 3 different kinds of TTG that I am aware of, and I am a peon with no medical background. Labs only test for one type. So it is entirely possible you test positive to some other random TTG test no one will start using for at least another decade.

It MAY, be worth your while, for your peace of mind, to reach out to a celiac disease research center to ask if they would be willing to review your pathology slides. You can have them sent directly to the research center, along with faxing your labs and any genetic testing you may have had done.

Good luck!

[Gemini]

3 hours ago, gertrude said:

Thanks for your comments, RMJ and Gemini. Very helpful.

I've been pretty disappointed since my appointment on Monday because I really wanted a firm diagnosis. I'm okay eating gluten free on my own, but it would be easier to have family and friends (and other social settings) take it seriously if I could say firmly that I had been diagnosed with celiac. I do plan to eat gluten-free for at least six months and see how that affects my symptoms. I have a couple of symptomatic family members who are now going to be tested, so I am hoping if they are able to get a firm diagnosis, I can feel more confident about a lifelong gluten-free diet.

From the scholarly literature I have been reading, a positive EMA and negative biopsy could still indicate either celiac disease or a "very high" chance of developing celiac later on. So I think a gluten-free diet is my answer. I'm just not certain how vigilant to be about cross-contamination, etc., without a firm diagnosis.

The only people who don't have to worry about cc are those half ass, fad dieters.  With a positive EMA, positive genetic screen and an inflamed duodenum, along with mild blunting of the villi, you need to be careful like we all do.  In 6 months of following a strict gluten-free diet, go back and have them re-do the EMA. If it's negative, that should convince you. 

Do not worry about what anyone else has to say about what you do.  You don't have to please anyone but yourself and guard your own health. It doesn't matter about convincing relatives to be tested, either, because if they are anything like many of our families, they won't get tested. They won't want to hear about it....even if you had the biopsy slides to show them.  I still have family members, after 12 years, that don't want to hear it and they are symptomatic or have associated issues they need strong meds to somewhat control. I just say.......'How's that workin' for ya"?    I take crap from no one with regards to my diet. 

[gertrude]

Thanks for your help and comments, Gemini and ironictruth. This whole experience has been very confusing for me, and this forum has provided me with a lot of comfort and answers.

[ironictruth]

20 hours ago, gertrude said:

Thanks for your help and comments, Gemini and ironictruth. This whole experience has been very confusing for me, and this forum has provided me with a lot of comfort and answers.

Here is one example of what I mentioned above.

Open Original Shared Link

 

 

[Victoria5289]

On 4/30/2017 at 10:49 AM, RMJ said:

This seems odd.  No SIGNIFICANT villous blunting.  Was there mild villous blunting?  Increased intraepithelial lymphocytes?

How about checking for aka fibroid issues or may want check a tumor of some kind