Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Unusual test results & Endoscopy rant

Vanillabean

Recommended Posts

Vanillabean Apprentice
Vanillabean
Posted
  • Author
16 minutes ago, frieze said:

 

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


RMJ Mentor
RMJ
Posted
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 Apprentice
Vanillabean
Posted
  • Author
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 Mentor
Jmg
Posted
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 Rookie
gertrude
Posted

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 Experienced
Gemini
Posted
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.  :o  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 Mentor
RMJ
Posted

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."

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


gertrude Rookie
gertrude
Posted

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 Proficient
ironictruth
Posted
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 Experienced
Gemini
Posted
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.  :ph34r:

gertrude Rookie
gertrude
Posted

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 Proficient
ironictruth
Posted
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

 

 

  • 2 weeks later...
Victoria5289 Apprentice
Victoria5289
Posted
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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,368
    • Most Online (within 30 mins)
      7,748
    Jdhunt
    Newest Member
    Jdhunt
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...