Confused by symptoms and histology. Looking for opinions.

[Cporosus1]

Hello everyone,

So my GI doctor thinks I may have celiac disease. I have mild, patchy villous blunting in my duodenum and mild chronic gastritis. However, I do NOT have IELs, crypt abscesses or any of the other hallmark signs of celiac (beyond the blunting). I have mild symptoms that dont appear to be made worse when I eat gluten, but I have been having them for at least 10 years. There was some concern of Crohn's disease, since I had a perianal abscess 7 years ago, but there is strong reason to believe that was cryptoglandular in origin and not due to a disease process. I had two colonoscopies (with biopsies) that were both normal. Next step is an MRE, but I'm curious if any one else has had a similar situation? (Minus the abscess, of course). 

[trents]

Villi blunting is the hallmark of celiac disease. However, there are certain medications such as NSAIDS and some BP meds that have also been implicated in villi blunting as well as some non gluten food proteins, particularly casein (dairy). As you have noted, some medical conditions of the bowel also mimic celiac blunting, including Crohn's and some parasitic infections.

Have you had  full panel celiac IGA antibody testing done?

Unless you were totally committed to eliminating all gluten from your diet, not just major amounts, it would be difficult to conclude gluten is not the culprit. Several recent studies have shown that the majority of people who believe they are eating gluten free are actually eating a lower gluten diet than the general population, particularly those who still dine out. Most people attempting to eat gluten free don't take into account cross contamination events or are uninformed about how gluten is hidden in processed food by the food industry.

[Cporosus1]

Hi trents,

Thanks for the response. I am getting the IGA antibody testing done two weeks after my MRE which is next week. Im hoping these can finally figure out the cause. I dont take NSAIDs and never have, so I know its not that. I travel to tropical countries fairly frequently for work, and Im usually in remote jungles in these countries, so Im guessing tropical sprue cannot be discounted (although I imagine its still unlikely). In addition to gluten, are there ways to test for other food allergies that could cause blunting? I also used psyllium husk for years and a few reports suggest that it could also cause blunting, but I stopped using it a few months ago.

Thanks!

[trents]

Are you on any blood pressure meds of the "sartan" family?

I hope you realize that for celiac disease testing, both the antibody test and the endoscopy/biopsy, one needs to be eating gluten regularly beforehand. For the antibody test to be valid, gluten needs to be consumed daily 6-8 weeks beforehand and for the endoscopy, at least 2 weeks beforehand. We have a lot of forum participants whose physicians neglected to inform them accordingly or were ignorant of those facts. Many of them had already started on a gluten-free diet before testing. Even the equivalent of a slice of wheat bread daily should be sufficient.

Edited March 24, 2021 by trents

[Cporosus1]

Hi trents,

No Im not on any blood pressure meds. The only medications I take are- Lexapro, Unisom and Imodium. I take all three on a daily basis. I also use marijuana occasionally to help with anxiety. But no other medications. Yes thanks my GI doc told me about the need to be eating gluten for the test, so Ive been eating it. Havent noticed symptoms getting any worse compared to gluten-free, but its possible that I never was fully gluten-free. 

Thanks

[Scott Adams]

In case your doctor didn't mention this, you need to keep eating gluten daily until all tests for celiac disease are completed.

[docaz]

Mild blunting by itself is common in gastritis and duodenitis and can have many reasons (see below). It is important to identify the type of infiltrate in the lining. Celiac disease is associated with an increased ratio of neutrophilic infiltrate. An experienced pathologist will easily be able to determine that. Also, if the blunting is caused by celiac disease, it is essentially almost a given that the blood tests will show that. If the blood tests are negative and the infiltrate does not have a higher rate of neutrophils there is a very high chance that the blunting is caused by something else. This is worth reading https://www.verywellhealth.com/villous-atrophy-562583#:~:text=Celiac disease is the best,system on your intestinal villi.

[Cporosus1]

Thanks. They could not find any infiltrates in the biopsy. No IELs or crypt abscesses or anything else. Just mild patchy "widening" (which Im assumed is the same as blunting). 

[docaz]

1 hour ago, Cporosus1 said:

Thanks. They could not find any infiltrates in the biopsy. No IELs or crypt abscesses or anything else. Just mild patchy "widening" (which Im assumed is the same as blunting). 

It is a little unusual to start out with the biopsy before taking blood tests but that's too late now. Especially if the blunting is mild, there is a lot of subjectivity to the histologic findings because it is not really quantified. What one pathologist would evaluate as mild blunting, another one might consider it within normal limits.  If the blood tests come out negative, celebrate with a nice, cold gluten containing beer. On a completely different note, this is a long shot but some people have symptoms related to gluten or similar to gluten sensitivity and that is caused by complex sugars. An inexpensive product called Bean-zyme can do the trick. The other thing that is also worth discussing with your GI is high (or low) gastric acidity and one other thing that is common (and I actually had it) is an H. Pylori infection that is easily treated.

[Kate333]

10 hours ago, Cporosus1 said:

Hi trents,

No Im not on any blood pressure meds. The only medications I take are- Lexapro, Unisom and Imodium. I take all three on a daily basis. I also use marijuana occasionally to help with anxiety. But no other medications. Yes thanks my GI doc told me about the need to be eating gluten for the test, so Ive been eating it. Havent noticed symptoms getting any worse compared to gluten-free, but its possible that I never was fully gluten-free. 

Thanks

Hi Cporosus1.  Just wondering if you find Lexapro and Unisom much help to you?  Either for sleep and/or digestion issues?

I have really bad anxiety and insomnia and likely IBS and could use some "extra help" in relieving all those symptoms  I've heard some anti-depressants/anxiety meds can actually calm down one's digestive system as well as addressing sleep/anxiety.

Thanks for any comments.   

[SherazAhmed]

16 hours ago, Cporosus1 said:

Hello everyone,

So my GI doctor thinks I may have celiac disease. I have mild, patchy villous blunting in my duodenum and mild chronic gastritis. However, I do NOT have IELs, crypt abscesses or any of the other hallmark signs of celiac (beyond the blunting). I have mild symptoms that dont appear to be made worse when I eat gluten, but I have been having them for at least 10 years. There was some concern of Crohn's disease, since I had a perianal abscess 7 years ago, but there is strong reason to believe that was cryptoglandular in origin and not due to a disease process. I had two colonoscopies (with biopsies) that were both normal. Next step is an MRE, but I'm curious if any one else has had a similar situation? (Minus the abscess, of course). 

I think its best to have a celiac disease testIng, if symptoms appears. And also avoid wheat, including spelt, farro, graham, khorasan wheat, semolina, durum, wheatberries, rye, barley, triticale, malt, including malted milk, malt extract, malt vinegar, brewer's yeast, wheat starch, types of food. It is also preferrable to have a blood test as a precautions. Consult your doctor before taking any type of supplements. You need to have a gluten free diet which promotes your intestinal healing. Many doctors say that it can lasts for years. 

[Cporosus1]

5 hours ago, Kate333 said:

Hi Cporosus1.  Just wondering if you find Lexapro and Unisom much help to you?  Either for sleep and/or digestion issues?

I have really bad anxiety and insomnia and likely IBS and could use some "extra help" in relieving all those symptoms  I've heard some anti-depressants/anxiety meds can actually calm down one's digestive system as well as addressing sleep/anxiety.

Thanks for any comments.   

Hi Kate, 

I use the Unisom for severe insomnia that was unresponsive to anything other than Klonopin and Unisom. Since Klonopin is highly addictive, I went with the Unisom. Sadly, despite years of CBT I still have a very difficult time sleeping without it. 

I take the Lexapro for anxiety and OCD. To be honest, it hasnt helped as much as Id like, but I have to stay on it because Ive been on SSRIs for two decades and when I tried to go off of Prozac I had horrible anxiety so I went on Lexapro. It does help some, but it isnt a magic bullet like Xanax (which I also cant take because the rebound anxiety is debilitating).

[Cporosus1]

10 hours ago, docaz said:

It is a little unusual to start out with the biopsy before taking blood tests but that's too late now. Especially if the blunting is mild, there is a lot of subjectivity to the histologic findings because it is not really quantified. What one pathologist would evaluate as mild blunting, another one might consider it within normal limits.  If the blood tests come out negative, celebrate with a nice, cold gluten containing beer. On a completely different note, this is a long shot but some people have symptoms related to gluten or similar to gluten sensitivity and that is caused by complex sugars. An inexpensive product called Bean-zyme can do the trick. The other thing that is also worth discussing with your GI is high (or low) gastric acidity and one other thing that is common (and I actually had it) is an H. Pylori infection that is easily treated.

Thanks docaz,

The main reason they did the biopsy first was because I was having a colonoscopy at the same time since Crohn's was their top candidate due to the perianal abscess. I know its possible, but some of these GI docs dont realize how common cryptoglandular abscesses are. My proctologist is always the opposite of my GI doc. But the colonoscopies are always clean and healthy. 

I also had mild increase in something in the lamina propria, but I dont recall the terminology (Ill have to look at my documents), but that was the only thing noticed outside of the widening. Along with the gastritis, of course. 

They tested the biopsies for H. pylori but didnt find anything. Is biopsy the best test for H. pylori? 

[docaz]

5 hours ago, Cporosus1 said:

Thanks docaz,

The main reason they did the biopsy first was because I was having a colonoscopy at the same time since Crohn's was their top candidate due to the perianal abscess. I know its possible, but some of these GI docs dont realize how common cryptoglandular abscesses are. My proctologist is always the opposite of my GI doc. But the colonoscopies are always clean and healthy. 

I also had mild increase in something in the lamina propria, but I dont recall the terminology (Ill have to look at my documents), but that was the only thing noticed outside of the widening. Along with the gastritis, of course. 

They tested the biopsies for H. pylori but didnt find anything. Is biopsy the best test for H. pylori? 

Usually, a blood test or a breath test is done to identify H. pylori because it is less invasive than a scope but if a scope is done anyway, it can be used for diagnosis. 

That "lamina propria" information is important because that's where the changes are seen in the mucosa of the intestine. Actually, I mistakenly said in my previous post that there is in increase in neutrophils but it is actually lymphocytes and not neutrophils. In any case, a good pathologist will identify that. 

[Cporosus1]

2 hours ago, docaz said:

Usually, a blood test or a breath test is done to identify H. pylori because it is less invasive than a scope but if a scope is done anyway, it can be used for diagnosis. 

That "lamina propria" information is important because that's where the changes are seen in the mucosa of the intestine. Actually, I mistakenly said in my previous post that there is in increase in neutrophils but it is actually lymphocytes and not neutrophils. In any case, a good pathologist will identify that. 

Thanks docaz,

So apparently no lymphocytes were found at all, which Ive read is odd in celiac. Could it still be celiac with just mild blunting without other histology? Ive read that SIBO could potentially cause blunting without intraepithelial lymphocytes.

[Kate333]

18 hours ago, Cporosus1 said:

Hi Kate, 

I use the Unisom for severe insomnia that was unresponsive to anything other than Klonopin and Unisom. Since Klonopin is highly addictive, I went with the Unisom. Sadly, despite years of CBT I still have a very difficult time sleeping without it. 

I take the Lexapro for anxiety and OCD. To be honest, it hasnt helped as much as Id like, but I have to stay on it because Ive been on SSRIs for two decades and when I tried to go off of Prozac I had horrible anxiety so I went on Lexapro. It does help some, but it isnt a magic bullet like Xanax (which I also cant take because the rebound anxiety is debilitating).

Thanks for your response, Cporosus1.

Just wanted to warn you that "magic bullet" Xanax is also highly addictive!  My GP has prescribed Remeron (Mirtazapine), which also reportedly helps treat both insomnia and IBS.  I haven't tried it yet but may do so soon.  I've relied on meditation, relaxation videos (I highly recommend Michael Sealy's YouTube videos.  He has some great ones on anxiety and sleep issues and they are free on the internet.)  I haven't tried CBT for these issues yet.  Partly because it's so expensive.  Partly because I think I wouldn't hear or learn anything I haven't already heard a hundred times before (set a regular sleep schedule and stick to it, eat a balanced, good diet, unplug the Iphone before bed, limit distressing programs and TV news/social media etc.)  

I don't know about you, but this pandemic has really intensified my chronic anxiety/insomnia in the last year.  It's become so hard to discern whether the stress is due to this seemingly endless pandemic or a fairly recent gluten/IBS diagnosis (late 2019) and lingering issues.  Regardless of the source of our stress, I send you best wishes for speedy healing!

[docaz]

10 hours ago, Cporosus1 said:

Thanks docaz,

So apparently no lymphocytes were found at all, which Ive read is odd in celiac. Could it still be celiac with just mild blunting without other histology? Ive read that SIBO could potentially cause blunting without intraepithelial lymphocytes.

This is obviously something to discuss with your doctor but it is not likely to be celiac. You can also contact the pathologist who looked at the slides. They do not often get that request and depending on the person, she/he might be very happy to speak to you. 

[Cporosus1]

6 hours ago, Kate333 said:

Thanks for your response, Cporosus1.

Just wanted to warn you that "magic bullet" Xanax is also highly addictive!  My GP has prescribed Remeron (Mirtazapine), which also reportedly helps treat both insomnia and IBS.  I haven't tried it yet but may do so soon.  I've relied on meditation, relaxation videos (I highly recommend Michael Sealy's YouTube videos.  He has some great ones on anxiety and sleep issues and they are free on the internet.)  I haven't tried CBT for these issues yet.  Partly because it's so expensive.  Partly because I think I wouldn't hear or learn anything I haven't already heard a hundred times before (set a regular sleep schedule and stick to it, eat a balanced, good diet, unplug the Iphone before bed, limit distressing programs and TV news/social media etc.)  

I don't know about you, but this pandemic has really intensified my chronic anxiety/insomnia in the last year.  It's become so hard to discern whether the stress is due to this seemingly endless pandemic or a fairly recent gluten/IBS diagnosis (late 2019) and lingering issues.  Regardless of the source of our stress, I send you best wishes for speedy healing!

Hi Kate,

Yes I rarely take Xanax anymore for that very reason. I only take it if its an absolute emergency, which rarely happens. I have taken Mirtazapine before ane it just doesnt agree with me, for whatever reason. Surprisingly, even though it is commonly prescribed for IBS-D, I actually seem to get diarrhea when Im on Mirtazapine. It helped me sleep, but the bowel problems just werent worth it (they were more pronounced than mg current, more subtle, bowel issues).