No increased intraepithelial lymphocytes

[Lu Sims]

I’m confused. I had a blood test done showing a high probability of celiac. My doctor put me on a gluten free diet for one month until I insisted on a biopsy. The biopsy showed a small flattening of villi, but no increased IELs. Can I still have celiac without increased IELs?

[trents]

4 minutes ago, Lu Sims said:

I’m confused. I had a blood test done showing a high probability of celiac. My doctor put me on a gluten free diet for one month until I insisted on a biopsy. The biopsy showed a small flattening of villi, but no increased IELs. Can I still have celiac without increased IELs?

Welcome to the forum, Lu Sims!

The lack of IELs makes sense to me if you had been on a gluten free diet for a month. Once you withdraw gluten, the inflammation of the small bowel lining stops and the villi begin to recover. The IELs would be part of the immune system response and the inflammation. It may be that the old IELs had already been cleared from your system by the time the biopsy was done. It is unfortunate that you had been put on a gluten free diet before the biopsy. The Mayo clinic guidelines for a pretest gluten challenge are the daily consumption of gluten equivalent to two slices of wheat bread for two weeks leading up to the endoscopy/biopsy.

[Lu Sims]

Unfortunately, since I was referred to a Nurse Practitioner instead of a Gastroenterologist they would not let me see a Gastroenterologist after my blood tests showed celiac  I had to fight to get any testing done, and now I worry about the accuracy of it since I had been gluten free for a month.  It’s good to hear that it could be the reason for showing no increased IELs. think I will always worry that I have been misdiagnosed because of this. 

[trents]

Lu, can you post the results of the initial antibody blood work along with the reference ranges for negative vs. positive?

Did you experience an improvement in symptoms after a month of being gluten free?

[plumbago]

Hello,

I also tend to think that given your positive blood tests and some flattened villi, that you more likely than not have Celiac. The only question I have is what is meant by no "increased IELs?" I know IEL is intraepithelial lymphocytes but where does the increased come from? Increased from what? Have you had biopsies done previously? Maybe I'm being too literal. In any event, what is the number of IELs that they found to determine were not increased? And yes, please do post your results of the Celiac test(s) you had done, making sure to hide your personal information.

Plumbago

[Lu Sims]

55 minutes ago, plumbago said:

Hello,

I also tend to think that given your positive blood tests and some flattened villi, that you more likely than not have Celiac. The only question I have is what is meant by no "increased IELs?" I know IEL is intraepithelial lymphocytes but where does the increased come from? Increased from what? Have you had biopsies done previously? Maybe I'm being too literal. In any event, what is the number of IELs that they found to determine were not increased? And yes, please do post your results of the Celiac test(s) you had done, making sure to hide your personal information.

Plumbago

 

4 hours ago, trents said:

Lu, can you post the results of the initial antibody blood work along with the reference ranges for negative vs. positive?

Did you experience an improvement in symptoms after a month of being gluten free?

Everything I have read says IELs should be elevated. I have not had any other biopsies. Thank you so much for helping me through this. This is probably more results than you are asking for, but this is so new to me I wasn’t sure what to post. I had blood work done in October because I was having so much pain in my stomach, but no other symptoms. The test showed

Tissue Transglutaminase Ab, IgA      83.4   (Antibody detected if more than 15)

MPV 13.7  (normal 7.5-12.5)

Leukocyte  2+  (normal range negative)

elevated WBC  6-10 (normal)

based on these results I was referred to Nurse Practitioner in Gastro and new tests were done.  Now Leukocyte, MPV, and white blood counts were normal and TRANSGLUTAMINASE was 1/4 as much without changing my diet.  This were my abnormal results in January.

Tissue Transg 50.9

HLA DQ2 positive

HLA DQ negative

HLA DQ A1  5

HLA DQ B1  201

HLA DQ B1 604

HLA Varient Detected 1

Endomysial Antibody Titer 1:10  (less than 1.5 normal)

Endomysial Antibody Screen IGA w/reflex Titer   Positive

Red blood count, hemoglobin, hematocrit all slightly elevated

Transferrin sat % 15 (normal 16-45)

This is my biopsy results

A) DUODENUM BX:
- SMALL INTESTINE MUCOSA WITH PARTIAL VILLUS FLATTENING (SEE COMMENT).
MICROSCOPIC:
Sections show small intestinal type mucosa with villus flattening. There is no increase of plasma cells within the lamina propria; there are no increased intraepithelial lymphocytes. Acute inflammation is not a conspicuous finding. There are no granulomas, viral inclusions, or parasites. There is no dysplasia or malignancy.
COMMENT:
No increased intraepithelial lymphocytes are noted. The histologic differential diagnosis for the changes seen in this small intestine biopsy include autoimmune enteropathy, tropical sprue, refractory sprue, protein intolerance, bacterial
overgrowth, and nutritional deficiencies, among others

STOMACH BX:
- FEATURES SUGGESTIVE OF MILD REACTIVE GASTROPATHY.
- FUNDIC-TYPE MUCOSA WITH NO SPECIFIC PATHOLOGIC FINDING.
- NO HELICOBACTER PYLORI-TYPE ORGANISMS SEEN.
- NO INTESTINAL METAPLASIA IDENTIFIED.
MICROSCOPIC:
Sections show antral type mucosa with slightly elongated, slightly tortuous gastric pits. There is a separate fragment of unremarkable fundic-type mucosa. Inflammation is not conspicuous. There are no granulomas or viral inclusions. There is no intestinal metaplasia, dysplasia, or malignancy. No Helicobacter pylori-type organisms are identified on H&E

[trents]

Your genetic testing indicates you have potential for celiac disease.

Your tTG-IGA is strongly positive. This is the first, the most common and often the only test physicians will order when checking for celiac disease. It is considered to be the test that combines good sensitivity with good specificity. And keep in mind, this is after you had been gluten free for a month. It would likely have been considerably higher had you been eating gluten up to the time of the blood draw.

Your EMA with reflex titer is positive. Not sure why this was run when the EMA Titer itself appears to be normal. Normally, a reflex titer is ordered when a value is positive. Perhaps it was ordered because the tTG-IGA was strongly positive. EMA is very specific for celiac disease.

You have slightly low transferrin (could indicate anemia is setting in), though your two other iron-related tests are slightly high. Not sure what the relationship between those is but they are only slightly out of whack.

Your small bowel villi showed some flattening.

 

So, there are several factors that suggest celiac disease. What symptoms were you having that led to you being checked for celiac disease? And did you experience any improvement in symptoms after being on a gluten-free diet for a month?

 

[Lu Sims]

32 minutes ago, trents said:

Your genetic testing indicates you have potential for celiac disease.

Your tTG-IGA is strongly positive. This is the first, the most common and often the only test physicians will order when checking for celiac disease. It is considered to be the test that combines good sensitivity with good specificity. And keep in mind, this is after you had been gluten free for a month. It would likely have been considerably higher had you been eating gluten up to the time of the blood draw.

Your EMA with reflex titer is positive. Not sure why this was run when the EMA Titer itself appears to be normal. Normally, a reflex titer is ordered when a value is positive. Perhaps it was ordered because the tTG-IGA was strongly positive. EMA is very specific for celiac disease.

You have slightly low transferrin (could indicate anemia is setting in), though your two other iron-related tests are slightly high. Not sure what the relationship between those is but they are only slightly out of whack.

Your small bowel villi showed some flattening.

 

So, there are several factors that suggest celiac disease. What symptoms were you having that led to you being checked for celiac disease? And did you experience any improvement in symptoms after being on a gluten-free diet for a month?

 

Thank you so much for all the great information! The blood tests were all run before starting a gluten free diet. Only the biopsy was after, about a month after. The only symptoms I really had was an unexplained pain in the small intestine area that wouldn’t even allow me to sleep through the night. It came on suddenly and not until I was 60 years old. I would say I feel a lot better, not 100% yet, but much better. I just wish I could be sure.  The problem is any question I ask the Nurse Practitioner, like why aren’t  the IELs elevated when I read they always are with celiac, she just tells me don’t worry about it, it’s celiac.  She was also the one who didn’t want to do a biopsy until I insisted. I feel much better now that I have gotten this information from you. I would hate to live strictly gluten free if it was an intolerance or a sensitivity. I love to travel and it feels a little overwhelming to think of traveling now. Thank you!

[trents]

1 hour ago, Lu Sims said:

 I would hate to live strictly gluten free if it was an intolerance or a sensitivity. I love to travel and it feels a little overwhelming to think of traveling now. Thank you!

Your tTG-IGA and EMA would not be positive if you had NCGS (Non Celiac Gluten Sensitivity). There are a few other things that can cause villi blunting such as a cross-reaction to the dairy protein (casein), some tropical parasitic infestations, Crohn's disease, a certain blood pressure medication and NSAIDs I believe. But a positive EMA just about nails it I think.

It is a misconception that you can be more relaxed with NCGS than with celiac disease when it comes to avoiding gluten. For some people, NCGS damages body systems even if it doesn't blunt the SB villi. We get fairly frequent reports of people with NCGS who have neurological damage manifesting in things like gluten ataxia.

Also, this might be helpful in really getting on top of gluten free eating rather than just lower gluten eating:

Yes, eating out will be the biggest danger for getting glutened as even though you might order something gluten free you have no control over how it will be cooked and handled back in the kitchen. So, CC (Cross Contamination) is very likely. One strategy is to ask them to cook your food in separate, clean pots and pans. Our administrator, Scott Adams, had the experience at an Olive Garden where he ordered the gluten free spaghetti noodles and got sick. He discovered that the kitchen staff had boiled them in the same pot of water that had been used for wheat noodles.

Edited February 17, 2023 by trents

[RMJ]

If your tissue transglutaminase antibodies normalize after 6-12 months on a strict gluten free diet that would be another indication supporting a diagnosis of celiac disease.

[Lu Sims]

57 minutes ago, trents said:

Your tTG-IGA and EMA would not be positive if you had NCGS (Non Celiac Gluten Sensitivity). There are a few other things that can cause villi blunting such as a cross-reaction to the dairy protein (casein), some tropical parasitic infestations, Crohn's disease, a certain blood pressure medication and NSAIDs I believe. But a positive EMA just about nails it I think.

It is a misconception that you can be more relaxed with NCGS than with celiac disease when it comes to avoiding gluten. For some people, NCGS damages body systems even if it doesn't blunt the SB villi. We get fairly frequent reports of people with NCGS who have neurological damage manifesting in things like gluten ataxia.

Also, this might be helpful in really getting on top of gluten free eating rather than just lower gluten eating:

Yes, eating out will be the biggest danger for getting glutened as even though you might order something gluten free you have no control over how it will be cooked and handled back in the kitchen. So, CC (Cross Contamination) is very likely. One strategy is to ask them to cook your food in separate, clean pots and pans. Our administrator, Scott Adams, had the experience at an Olive Garden where he ordered the gluten free spaghetti noodles and got sick. He discovered that the kitchen staff had boiled them in the same pot of water that had been used for wheat noodles.

Thank you I finally feel like I understand my test results! 

51 minutes ago, RMJ said:

If your tissue transglutaminase antibodies normalize after 6-12 months on a strict gluten free diet that would be another indication supporting a diagnosis of celiac disease.

Thank you!

[trents]

The difference between celiac disease and NCGS is that NCGS doesn't cause inflammation of the villous lining of the small bowel. Therefore, it does not produce antibodies and does not cause blunted villi. Though celiac disease and NCGS produce many of the same symptoms, there is not yet any test for NCGS. celiac disease must first be ruled out if there are gluten-caused symptoms. Some experts feel that NCGS can be precursor to celiac disease and it is 10x more common than celiac disease. We know much more about the immune system's response to gluten in the case of celiac disease than we do with NCGS. NCGS is somewhat of a mystery at this point.

Edited February 17, 2023 by trents

[Lu Sims]

6 minutes ago, trents said:

The difference between celiac disease and NCGS is that NCGS doesn't cause inflammation of the villous lining of the small bowel. Therefore, it does not produce antibodies and does not cause blunted villi. Though celiac disease and NCGS produce many of the same symptoms, there is not yet any test for NCGS. celiac disease must first be ruled out if there are gluten-caused symptoms. Some experts feel that NCGS can be precursor to celiac disease and it is 10x more common than celiac disease. We know much more about the immune system's response to gluten in the case of celiac disease than we do with NCGS. NCGS is somewhat of a mystery at this point.

 

7 minutes ago, trents said:

The difference between celiac disease and NCGS is that NCGS doesn't cause inflammation of the villous lining of the small bowel. Therefore, it does not produce antibodies and does not cause blunted villi. Though celiac disease and NCGS produce many of the same symptoms, there is not yet any test for NCGS. celiac disease must first be ruled out if there are gluten-caused symptoms. Some experts feel that NCGS can be precursor to celiac disease and it is 10x more common than celiac disease. We know much more about the immune system's response to gluten in the case of celiac disease than we do with NCGS. NCGS is somewhat of a mystery at this point.

Oh wow!  That must be so difficult for people with NCGS. I was so overwhelmed by all the things you are at a higher risk of getting if you have celiac disease, that I had no idea of the concerns for people with NCGS.  I wish there was more understanding in the general public for people with problems with gluten. I feel like peanut allergies are taken more seriously in the food industry, but too many people still think this is a fad diet, or something that just makes you feel unwell.  Thank you so much for helping me to understand things so much better.

[trents]

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