perplexing situation with celiac testing

[Dawson123]

After two years of being gluten free. First carnivore for half a year, then gluten free for the past year and a half. I took a blood test about 8 months ago (i had been gluten free for about 10 months beforehand, not knowing you had to have gluten in your system for it to be accurate) but i tested negative, now after telling my primary doctor that i had been gluten free, he referred me to gastro for endoscopy. Got my biopsy back, gastro told me i don’t have celiac because my villi were in perfect condition. Left the gastro a couple days ago with that diagnosis, and i felt very dissatisfied. My issues are so bad that i can’t just accept that i don’t have this, after looking at my biopsy, and doing some research, which i’ll add under this. it’s left me with even more questions, im wondering why the gastro knew i hadn’t had gluten in almost two years and he didn’t tell me “in order for this test be accurate you need gluten for weeks before”. what should my next step be? im also confused because the biopsy results say “potential celiac” thankyou guys.

MICROSCOPIC DIAGNOSIS

RA / dgl

  DUODENUM BIOPSY SHOWING PRESERVED VILLOUS ARCHITECTURE WITH THE PRESENCE OF INCREASED NUMBERS OF LYMPHOCYTES. (SEE COMMENT)
The presence of increased lymphocytes with preserved villous architecture raises the possibility of potential/early celiac disease. Immunohistochemical studies utilizing lymphocytic markers CD3, CD8 and CD20 are necessary and will be performed to identify the type, quantity and location of lymphocytes to exclude Celiac disease or a lymphoproliferative disorder.

  BENIGN GASTRIC BIOPSY. A SPECIAL STAIN FOR HELICOBACTER ORGANISMS IS NEGATIVE. AN ALCIAN BLUE STAIN IS NEGATIVE FOR INTESTINAL METAPLASIA.

  BENIGN RANDOM COLON BIOPSY WITH NO EVIDENCE OF MICROSCOPIC COLITIS, COLLAGENOUS COLITIS OR INFLAMMATORY BOWEL DISEASE.

COMMENT:

Immunohistochemical studies utilizing CD3, CD8 and CD20 will be performed on the above duodenum biopsy (part A) to exclude celiac disease. A separate report will follow.

***SECONDARY REPORT TO FOLLOW***

IMMUNOHISTOCHEMICAL STUDIES WERE PERFORMED ON THE DUODENUM BIOPSY (PART A) UTILIZING LYMPHOCYTIC MARKERS CD3, CD8 AND CD20. THE PANEL REVEALS NO EVIDENCE OF INCREASED CD3+CD8+ INTRAEPITHELIAL T-LYMPHOCYTES IN SURFACE EPITHELIUM (LESS THAN 25 PER 100 ENTEROCYTES, <25%), ESPECIALLY IN TIPS OF VILLI. NO ABNORMAL DISTRIBUTION OF CD20+ B-LYMPHOCYTES IS PRESENT. THE IMMUNOHISTOCHEMICAL PROFILE, COMBINED WITH THE HISTOLOGIC FEATURES, SUPPORTS THE FOLLOWING DIAGNOSIS:

SMALL INTESTINAL MUCOSA SHOWING NO EVIDENCE OF CELIAC SPRUE.

NO EVIDENCE OF A MONOCLONAL B-CELL LYMPHOPROLIFERATIVE DISORDER.

Dr. George Varsegi has reviewed this case and concurs with the diagnosis.

QUALITY CONTROL

All positive controls for this case were positive.

References

Potential celiac disease PCD) demonstrates an increased number of intraepithelial lymphocytes (IEL) in architecturally normal villi and duodenal mucosa. The IEL are stained by immunohistochemistry with CD3 and CD8 antibodies. PCD is a prediction of future mucosal flattening and active celiac disease.

 

[cristiana]

Hi @Dawson123 and welcome to the forum.

I can quite see why you have questions.  Interestingly, when I had my last biopsy (and I am a coeliac) my results came back with raised lymphocytes but no villous damage.  I've been gluten free for a decade and my gastroenterologist said words to the effect that if I'd eaten nothing but rice and water all this time,  as a coeliac the report would have said exactly the same thing.

I would like some of my fellow mods to post their thoughts on this, but I think I'd be inclined to either speak to my gastroenterologist again and ask why these results can be relied upon without a gluten challenge having taken place, or get a second opinion from another consultant.

Out of interest, is there coeliac disease in your family - it is something that one inherits, although not every carrier gets it?

 

[Dawson123]

2 hours ago, cristiana said:

Hi @Dawson123 and welcome to the forum.

I can quite see why you have questions.  Interestingly, when I had my last biopsy (and I am a coeliac) my results came back with raised lymphocytes but no villous damage.  I've been gluten free for a decade and my gastroenterologist said words to the effect that if I'd eaten nothing but rice and water all this time,  as a coeliac the report would have said exactly the same thing.

I would like some of my fellow mods to post their thoughts on this, but I think I'd be inclined to either speak to my gastroenterologist again and ask why these results can be relied upon without a gluten challenge having taken place, or get a second opinion from another consultant.

Out of interest, is there coeliac disease in your family - it is something that one inherits, although not every carrier gets it?

 

Thankyou for responding! To answer the question, “Out of interest, is there coeliac disease in your family - it is something that one inherits, although not every carrier gets it?” I don’t particularly know if anyone in my family has it, everyone in my family has had stomach problems, from chronic gastritis, to crohns and colitis. Now a lot of them have issues that they never went to the doctor for, or followed up on, just live life with a touch of misery. For the question of celiac, i’m sure someone has it, since so many autoimmune diseases run in my family. But to not assume things, I will say no one has it that i know of, just other autoimmune diseases.

It’s just interesting to me that there’s increased lymphocytes, and the biopsy says there’s potential celiac, But doctor thinks it’s something else.

 

[Scott Adams]

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.

[Dawson123]

Just now, Scott Adams said:

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.

that’s the issue actually, being gluten free. I feel a lot better. But i’m still worse than your average person, i still have bowel movements atleast 6 times a day, I still have stomach pain. The doctor did find some gastritis, which they gave me medicine for to see if it will clear it up, but it was no serious gastritis, I’m 19 so drinking and smoking are not something that i do, which would cause gastritis if it weren’t for another reason like celiac or chronic gastritis etc.

[trents]

6 hours ago, Dawson123 said:

After two years of being gluten free. First carnivore for half a year, then gluten free for the past year and a half. I took a blood test about 8 months ago (i had been gluten free for about 10 months beforehand, not knowing you had to have gluten in your system for it to be accurate) but i tested negative, now after telling my primary doctor that i had been gluten free, he referred me to gastro for endoscopy. Got my biopsy back, gastro told me i don’t have celiac because my villi were in perfect condition. Left the gastro a couple days ago with that diagnosis, and i felt very dissatisfied. My issues are so bad that i can’t just accept that i don’t have this, after looking at my biopsy, and doing some research, which i’ll add under this. it’s left me with even more questions, im wondering why the gastro knew i hadn’t had gluten in almost two years and he didn’t tell me “in order for this test be accurate you need gluten for weeks before”. what should my next step be? im also confused because the biopsy results say “potential celiac” thankyou guys.

MICROSCOPIC DIAGNOSIS

RA / dgl

  DUODENUM BIOPSY SHOWING PRESERVED VILLOUS ARCHITECTURE WITH THE PRESENCE OF INCREASED NUMBERS OF LYMPHOCYTES. (SEE COMMENT)
The presence of increased lymphocytes with preserved villous architecture raises the possibility of potential/early celiac disease. Immunohistochemical studies utilizing lymphocytic markers CD3, CD8 and CD20 are necessary and will be performed to identify the type, quantity and location of lymphocytes to exclude Celiac disease or a lymphoproliferative disorder.

  BENIGN GASTRIC BIOPSY. A SPECIAL STAIN FOR HELICOBACTER ORGANISMS IS NEGATIVE. AN ALCIAN BLUE STAIN IS NEGATIVE FOR INTESTINAL METAPLASIA.

  BENIGN RANDOM COLON BIOPSY WITH NO EVIDENCE OF MICROSCOPIC COLITIS, COLLAGENOUS COLITIS OR INFLAMMATORY BOWEL DISEASE.

COMMENT:

Immunohistochemical studies utilizing CD3, CD8 and CD20 will be performed on the above duodenum biopsy (part A) to exclude celiac disease. A separate report will follow.

***SECONDARY REPORT TO FOLLOW***

IMMUNOHISTOCHEMICAL STUDIES WERE PERFORMED ON THE DUODENUM BIOPSY (PART A) UTILIZING LYMPHOCYTIC MARKERS CD3, CD8 AND CD20. THE PANEL REVEALS NO EVIDENCE OF INCREASED CD3+CD8+ INTRAEPITHELIAL T-LYMPHOCYTES IN SURFACE EPITHELIUM (LESS THAN 25 PER 100 ENTEROCYTES, <25%), ESPECIALLY IN TIPS OF VILLI. NO ABNORMAL DISTRIBUTION OF CD20+ B-LYMPHOCYTES IS PRESENT. THE IMMUNOHISTOCHEMICAL PROFILE, COMBINED WITH THE HISTOLOGIC FEATURES, SUPPORTS THE FOLLOWING DIAGNOSIS:

SMALL INTESTINAL MUCOSA SHOWING NO EVIDENCE OF CELIAC SPRUE.

NO EVIDENCE OF A MONOCLONAL B-CELL LYMPHOPROLIFERATIVE DISORDER.

Dr. George Varsegi has reviewed this case and concurs with the diagnosis.

QUALITY CONTROL

All positive controls for this case were positive.

References

Potential celiac disease PCD) demonstrates an increased number of intraepithelial lymphocytes (IEL) in architecturally normal villi and duodenal mucosa. The IEL are stained by immunohistochemistry with CD3 and CD8 antibodies. PCD is a prediction of future mucosal flattening and active celiac disease.

 

The GI doc's report indicated possible celiac disease even though you didn't mention to him/her that you had been gluten free because he had access to your records that did say that and because of the lymphocytes and possibly family history of celiac disease.

[cristiana]

@Dawson123   Gastritis is a condition that affects many people for a host of different reasons.   The National Health Service website here in the UK notes the principal causes:

• infection with a bacteria called helicobacter pylori (H. pylori)
• taking anti-inflammatory painkillers (such as ibuprofen) and aspirin
• drinking too much alcohol
• being very stressed and unwell, such as after surgery

Gastritis can also be caused by a problem with your immune system where it attacks the lining of your stomach.

Did your gastroenterologist test you for H. pylori?  Do you take any anti-inflammatory painkillers, another cause?

Cristiana

 

[Dawson123]

1 hour ago, cristiana said:

@Dawson123   Gastritis is a condition that affects many people for a host of different reasons.   The National Health Service website here in the UK notes the principal causes:

• infection with a bacteria called helicobacter pylori (H. pylori)
• taking anti-inflammatory painkillers (such as ibuprofen) and aspirin
• drinking too much alcohol
• being very stressed and unwell, such as after surgery

Gastritis can also be caused by a problem with your immune system where it attacks the lining of your stomach.

Did your gastroenterologist test you for H. pylori?  Do you take any anti-inflammatory painkillers, another cause?

Cristiana

 

yes. tested for h. pylori, negative. I don’t take any pain killers or drink alcohol, i never have stress nor do i live an unhealthy life. It’s an interesting one for sure.

yes. tested for h. pylori, negative. I don’t take any pain killers or drink alcohol, i never have stress nor do i live an unhealthy life. It’s an interesting one for sure

[cristiana]

So to summarise, on the one hand you have been told by your gastroenterologist  that you don't have coeliac disease because your villi are in 'perfect condition', but on the other hand your report states, "The presence of increased lymphocytes with preserved villous architecture raises the possibility of potential/early celiac disease."

I can see why you are dissatisfied with these results.

I am not a medical person but I suppose you could go back to your doctors and ask them if you should consider doing a proper gluten challenge of two slices of glutinous bread a day or the equivalent for six-eight weeks, then having the full panel of coeliac blood tests to see if there has been a reaction?

In my country, the UK, there is lot of support for coeliacs through the National Health Service,  so a proper diagnosis makes a big difference here. If that is the case where you live, you may wish to do a gluten challenge to make doubly sure one way or another.  But if that isn't the case or you do not wish to put yourself through such a challenge, you may wish to look at this thread and see if there are any aspects of the gluten free diet/lifestyle that you can improve upon that might help you feel better.

 

Edited October 2, 2023 by cristiana

[Scott Adams]

23 hours ago, Dawson123 said:

that’s the issue actually, being gluten free. I feel a lot better. But i’m still worse than your average person, i still have bowel movements atleast 6 times a day, I still have stomach pain. The doctor did find some gastritis, which they gave me medicine for to see if it will clear it up, but it was no serious gastritis, I’m 19 so drinking and smoking are not something that i do, which would cause gastritis if it weren’t for another reason like celiac or chronic gastritis etc.

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

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