Pathology report positive but bloodwork negative - help interpreting

[Emily TB]

Hi all, 

I had a colonoscopy and endoscopy for GI symptoms, my report came back stating: 

Diagnosis
 A. DUODENAL BIOPSIES SHOWING PARTIAL VILLOUS ATROPHY WITH INCREASE IN MUCOSAL AND EPITHELIAL LYMPHOCYTES SUGGESTIVE OF CELIAC DISEASE.
SUGGEST RESULTS OF BLOOD TESTS AND PATIENT'S RESPONSE TO GLUTEN FREE DIET FOR A DEFINITIVE DIAGNOSIS.
B. GASTRIC BIOPSY SHOWING ANTRAL MUCOSA WITH MILD CHRONIC GASTRITIS.

I had my bloodwork done today and all numbers are within normal range so I’m confused whether it is celiac or not? Or wondering if the bloodwork is a false negative? I was supposed to start the gluten-free diet this week but wondering if I need to hold off? My doctor takes ages to get back with follow ups. 

Bloodwork: 

IgG results: 12.54 reference: 6.00-16.00g/L

IgM results: 1.13 reference: 0.30-2.30 g/L

Immunoglobulin IgA results: 1.82 reference: 0.54-4.17 g/L 

I’ll ultimately wait for the doctor to respond but unsure if i should go gluten free in the meantime or not?

Thanks! 

[cristiana]

Hello Emily and welcome to the forum,

The biopsy results are suggestive of coeliac disease but occasionally villi can be blunted for different reasons, for example, by taking certain medication.  

It would be helpful to know if you have any other coeliacs in the family as this is a hereditary condition, or if you had been experiencing symptoms which led the doctors to suspect you might have coeliac disease in the first place.

Also, were any blood tests done before those procedures.  It would be good to see them - perhaps your numbers have come down since then?  A small percentage of coeliacs do not have positive blood tests, so you may fall into this group.

For myself, I have had similar results in an endoscopy some years after adopting a gluten free diet.  I share a house with gluten eaters so I guess little bits of gluten were still getting into my diet.

Sorry for all these questions, but a bit more info would be helpful.

Cristiana

 

Edited June 3, 2023 by cristiana

[trents]

Emily, the blood work done and posted results are odd and seem deficient. The most common blood antibody test run to detect celiac disease, the tTG-IGA, appears to be missing unless the "Immunoglobulin IgA results" is an oddly worded reference to it. The tTG-IGA is the favorite of doctors and the #1 test that should be run because it combines good sensitivity with good specificity. Was the testing done by a primary care doc or a GI specialist or was it done by say, a holistic medicine practitioner?

[Emily TB]

6 hours ago, cristiana said:

Hello Emily and welcome to the forum,

The biopsy results are suggestive of coeliac disease but occasionally villi can be blunted for different reasons, for example, by taking certain medication.  

It would be helpful to know if you have any other coeliacs in the family as this is a hereditary condition, or if you had been experiencing symptoms which led the doctors to suspect you might have coeliac disease in the first place.

Also, were any blood tests done before those procedures.  It would be good to see them - perhaps your numbers have come down since then?  A small percentage of coeliacs do not have positive blood tests, so you may fall into this group.

For myself, I have had similar results in an endoscopy some years after adopting a gluten free diet.  I share a house with gluten eaters so I guess little bits of gluten were still getting into my diet.

Sorry for all these questions, but a bit more info would be helpful.

Cristiana

 

Thanks for the response! Some background, I have been having constant and urgent diarrhea for about 2 years now (3-8x per day), fatigue, extreme bloating, I am also slightly anemic. I am not on any medications except birth control. My younger sister has a gluten sensitivity (she has been gluten free for 12 years now) but her bloodwork came back negative as well so they never investigated further. My mother has various autoimmune disorders as well (sjogrens). 

I initially was seeing a hematologist because I have a low WBC and neutropenia, I mentioned my symptoms and they referred me to the GI doctor who did the colonoscopy and endoscopy. I came back negative for IBD, colitis and neoplasia. This was my first and only bloodtest for gluten sensitivity so I have nothing to compare to. Not too sure what to think now. 

[Emily TB]

35 minutes ago, trents said:

Emily, the blood work done and posted results are odd and seem deficient. The most common blood antibody test run to detect celiac disease, the tTG-IGA, appears to be missing unless the "Immunoglobulin IgA results" is an oddly worded reference to it. The tTG-IGA is the favorite of doctors and the #1 test that should be run because it combines good sensitivity with good specificity. Was the testing done by a primary care doc or a GI specialist or was it done by say, a holistic medicine practitioner?

Hi there. thanks for the response. I believe that might be what the third one is as the full words that was requested on my requisition is “anti tissue transglutamic acid antibody and serum immunoglobulins” and then my report was as worded above. The test was requested by my GI Specialist. 

[trents]

6 minutes ago, Emily TB said:

Hi there. thanks for the response. I believe that might be what the third one is as the full words that was requested on my requisition is “anti tissue transglutamic acid antibody and serum immunoglobulins” and then my report was as worded above. The test was requested by my GI Specialist. 

As Cristiana explained, because of the damage to the SB villi from the pathology report of the biopsy, you certainly could have celiac disease but there are other possibilities as well. Some meds and some foods that can cross react with gluten (e.g. , oats and dairy) can also blunt the SB villi. Since you have had both blood antibody testing done and biopsy, it's time for you to trial a gluten free diet to see if symptoms improve. By the way, what symptoms do you have?

[Emily TB]

1 minute ago, trents said:

As Cristiana explained, because of the damage to the SB villi from the pathology report of the biopsy, you certainly could have celiac disease but there are other possibilities as well. Some meds and some foods that can cross react with gluten (e.g. , oats and dairy) can also blunt the SB villi. Since you have had both blood antibody testing done and biopsy, it's time for you to trial a gluten free diet to see if symptoms improve. By the way, what symptoms do you have?

That makes sense. I was tested for dairy when I was a kid but couldn’t go through with the test because I apparently refused to drink the liquid they gave, so I have grown up assuming I am lactose intolerant. I’m not on any medications besides birth control though. 

In terms of symptoms, I have not had a solid stool in 2 years (tmi sorry), constant and urgent diarrhea (3-8x per day), extreme fatigue after eating especially, I am slightly anemic and am on iron pills, bloating, and other symptoms I’m not sure are related such as dry rashes on my neck and hands, hair thinning etc. I also mentioned above I have neutropenia and low WBC which is why I was seeing a doctor in the first place. 

[trents]

Dairy intolerance is not always driven by lactose, the sugar in milk. When it comes to damaged small bowel villi from dairy, the protein, casein would be the culprit. Certain foods have proteins whose structure closely resembles gluten such that some people cross react to those foods as they would gluten. It is estimated that 10% of celiacs cross react to oats and I think about the same percentage cross react to dairy.

Edited June 3, 2023 by trents

[Emily TB]

11 minutes ago, trents said:

Dairy intolerance is not always driven by lactose, the sugar in milk. When it comes to damaged small bowel villi from dairy, the protein, casein would be the culprit. Certain foods have proteins whose structure closely resembles gluten such that some people cross react to those foods as they would gluten. It is estimated that 10% of celiacs cross react to oats and I think about the same percentage cross react to dairy.

Okay, so is it possible to be food intolerant to dairy or oats that causes the damage and those symptoms without having celiac disease? So basically my doctor will probably follow up with additional testing then? 

[trents]

38 minutes ago, Emily TB said:

Okay, so is it possible to be food intolerant to dairy or oats that causes the damage and those symptoms without having celiac disease? So basically my doctor will probably follow up with additional testing then? 

Yes, that is possible. But I'm not sure what further testing can be done to distinguish between celiac disease and some other food intolerance. There are food sensitivity tests out there like ELISA and AlCAT but they are less than definitive. They typically throw a lot of false positives. Your best bet IMO is to trial a gluten free diet for a few months and see if symptoms improve. I say that because that is most likely what you are dealing with, a 90% or so chance. If there is little or no improvement by eliminating gluten, then try dairy and then oats. Use the process of elimination.

Edited June 3, 2023 by trents

[Emily TB]

33 minutes ago, trents said:

Yes, that is possible. But I'm not sure what further testing can be done to distinguish between celiac disease and some other food intolerance. There are food sensitivity tests out there like ELISA and AlCAT but they are less than definitive. They typically throw a lot of false positives. Your best bet IMO is to trial a gluten free diet for a few months and see if symptoms improve. I say that because that is most likely what you are dealing with, a 90% or so chance. If there is little or no improvement by eliminating gluten, then try dairy and then oats. Use the process of elimination.

Gotcha okay, thanks so much that helps a lot! I appreciate the advice!  

[Scott Adams]

4 hours ago, Emily TB said:

Thanks for the response! Some background, I have been having constant and urgent diarrhea for about 2 years now (3-8x per day), fatigue, extreme bloating, I am also slightly anemic. I am not on any medications except birth control. My younger sister has a gluten sensitivity (she has been gluten free for 12 years now) but her bloodwork came back negative as well so they never investigated further. My mother has various autoimmune disorders as well (sjogrens). 

I initially was seeing a hematologist because I have a low WBC and neutropenia, I mentioned my symptoms and they referred me to the GI doctor who did the colonoscopy and endoscopy. I came back negative for IBD, colitis and neoplasia. This was my first and only bloodtest for gluten sensitivity so I have nothing to compare to. Not too sure what to think now. 

Given your symptoms and positive biopsy results you are very likely to have celiac disease. If your symptoms go away after a few weeks gluten-free it would confirm this.

[Emily TB]

2 hours ago, Scott Adams said:

Given your symptoms and positive biopsy results you are very likely to have celiac disease. If your symptoms go away after a few weeks gluten-free it would confirm this.

Thank you! I appreciate the input, I think that makes sense. I’ll try a gluten free diet and see how it goes.

[Wheatwacked]

8 hours ago, Emily TB said:

I have been having constant and urgent diarrhea for about 2 years now (3-8x per day), fatigue, extreme bloating, I am also slightly anemic. I am not on any medications except birth control. My younger sister has a gluten sensitivity (she has been gluten free for 12 years now) but her bloodwork came back negative as well so they never investigated further. My mother has various autoimmune disorders as well (sjogrens). 

I initially was seeing a hematologist because I have a low WBC and neutropenia, I mentioned my symptoms and they referred me to the GI doctor who did the colonoscopy and endoscopy. I came back negative for IBD, colitis and neoplasia.

Damaged villi is a hallmark of Celiac Disease.  It is a sure indicator of malabsorption syndrome which over time will lead to malnutrition because even though you may be eating enough, you are not absorbing them.  Many of your family's symptoms indicate deficiencies.

Mom's Sjrogens Disease is often accompanied by Vitamin D deficiency and B12 and anemia. As is every other autoimmune disease that has been investigated for vitamin D deficiency.

Vitamin B3, nicotinamide, if deficient is a cause of diarrhea and this could occasionally be present in those who are malnourished. Celiac Disease is after all a disease of malnourishment.

Choline deficiency (eggs, liver, beef) will cause fatty liver and poor digestion of fats often mistaken for Gall Bladder and bile disease. Include also bloating, fatigue and brain fog.

Anemia like mom could be B12.

Current estimate is that 40% of 1st degree relatives of someone with Celiac Disease are undiagnosed.

Awesome there are no meds to befuddle. And testing came back negative for IBD, colitis and neoplasia.

Oral contraceptives (OCs) are associated with lower levels of vitamins B6, B12, and folate.  B1, B3, B5, B6, B12, Choline and Taurine (an essential amino acid antioxident) are all essential to tenergy production. They are all affected by damaged small intestine villi.

I agree with your biopsy report and Scott. Your next step is the trial gluten free diet. If you improve, like your sister, it could be NCGS but Celiac Disease was not disproved in her.

Dollars to donuts your mom will likely show improvement on GFD and replenishment of vitamin D and B vitamins.

Diarrhea causes potassium deficiency. Potassium deficiency is a concern to most of the world.  Symptoms include: 

• weakness
• feeling tired
• muscle cramps
• confusion
• constipation
• an abnormal heart rhythm (arrhythmia) – skipped heartbeats or an irregular heartbeat
• tingling or numbness
• increased urination

And back to vitamin 😧😧

          Can Vitamin D Deficiency Cause Low White Blood Cell Count?  "Bogaczewicz et al. found that lupus patients with leukopenia were also at high risk of vitamin D deficiency. Baldini et al.observed a significant correlation between serum vitamin D levels and WBC count in patients with Sjogren’s syndrome. Furthermore, Arnson et al. found that vitamin D levels were correlated with WBC count and that the survival of critically ill patients with vitamin D deficiency was significantly shorter than those who were vitamin D sufficient."

 

 

[Emily TB]

6 hours ago, Wheatwacked said:

Damaged villi is a hallmark of Celiac Disease.  It is a sure indicator of malabsorption syndrome which over time will lead to malnutrition because even though you may be eating enough, you are not absorbing them.  Many of your family's symptoms indicate deficiencies.

Mom's Sjrogens Disease is often accompanied by Vitamin D deficiency and B12 and anemia. As is every other autoimmune disease that has been investigated for vitamin D deficiency.

Vitamin B3, nicotinamide, if deficient is a cause of diarrhea and this could occasionally be present in those who are malnourished. Celiac Disease is after all a disease of malnourishment.

Choline deficiency (eggs, liver, beef) will cause fatty liver and poor digestion of fats often mistaken for Gall Bladder and bile disease. Include also bloating, fatigue and brain fog.

Anemia like mom could be B12.

Current estimate is that 40% of 1st degree relatives of someone with Celiac Disease are undiagnosed.

Awesome there are no meds to befuddle. And testing came back negative for IBD, colitis and neoplasia.

Oral contraceptives (OCs) are associated with lower levels of vitamins B6, B12, and folate.  B1, B3, B5, B6, B12, Choline and Taurine (an essential amino acid antioxident) are all essential to tenergy production. They are all affected by damaged small intestine villi.

I agree with your biopsy report and Scott. Your next step is the trial gluten free diet. If you improve, like your sister, it could be NCGS but Celiac Disease was not disproved in her.

Dollars to donuts your mom will likely show improvement on GFD and replenishment of vitamin D and B vitamins.

Diarrhea causes potassium deficiency. Potassium deficiency is a concern to most of the world.  Symptoms include: 

• weakness
• feeling tired
• muscle cramps
• confusion
• constipation
• an abnormal heart rhythm (arrhythmia) – skipped heartbeats or an irregular heartbeat
• tingling or numbness
• increased urination

And back to vitamin 😧😧

          Can Vitamin D Deficiency Cause Low White Blood Cell Count?  "Bogaczewicz et al. found that lupus patients with leukopenia were also at high risk of vitamin D deficiency. Baldini et al.observed a significant correlation between serum vitamin D levels and WBC count in patients with Sjogren’s syndrome. Furthermore, Arnson et al. found that vitamin D levels were correlated with WBC count and that the survival of critically ill patients with vitamin D deficiency was significantly shorter than those who were vitamin D sufficient."

 

 

Wow! Thanks so much for all of this information, that is a lot to think about. I appreciate it! I am actually vitamin D deficient and take vitamins but I was told initially that it was normal living in Canada, but definitely something to take into account considering these new discoveries. 

Thank you again for your response!  

 

[Wheatwacked]

10 hours ago, Emily TB said:

it was normal living in Canada

Just because everyone has it does not make it normal or healthy.  

A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;

42% US adults are low or deficient. Up to 70% Canadians, 30% UK.  Normal is 80 ng/ml. Low is less than 29 ng/ml and is based solely on what it takes to prevent Rickets. All the studies are dismissed as insufficient evidence.

Imagine a factory that is built for 100 workers trying desperately to stay afloat with only 29 workers.

Low D causes depressions (Seasonal Affective Disorder is one), osteoporosis, tooth decay, autoimmune diseases, infertility and more bad stuff.

Quote

 

 

     Although the Royal Academy of Physicians admitted that it did not have any direct evidence for this conclusion, it based its conclusion on the literature that reported that pregnant rodents receiving intoxicating doses of vitamin D delivered pups with altered facial features... As a result, legislation was instituted in Great Britain forbidding the fortification of any food or any product with vitamin D... . This concern for vitamin D toxicity in children led to most of the world (including countries in Europe, the Middle East, Asia, Africa, and South America) banning vitamin D fortification of milk. Only the United States, Canada, and a few European countries continued to permit milk to be fortified with vitamin D...

The evidence is clear that vitamin D toxicity is one of the rarest medical conditions and is typically due to intentional or inadvertent intake of extremely high doses of vitamin D (usually in the range of >50,000-100,000 IU/d for months to years).   https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf

 

• According to McCarthy, his target range is based upon several factors:
• A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
• Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
• Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL; 
• https://www.healio.com/news/endocrinology/20120325/surge-of-information-on-benefits-of-vitamin-d-but-no-interventional-trial-data-exist-yet-to-ensure-s

[knitty kitty]

@Wheatwacked is right.  

"Vitamin D is responsible for the barrier function of the intestinal epithelium and for the modulation of the bowel immune system, hence, low levels may be associated with greater gut permeability and, consequently, with GutMicrobiota-induced metabolic endotoxemia that induces a low-grade inflammation."

Vitamin D : Nutrient, Hormone, and Immunomodulator

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6266123/

[Sabaarya]

On 6/2/2023 at 11:56 PM, Emily TB said:

Hi all, 

I had a colonoscopy and endoscopy for GI symptoms, my report came back stating: 

Diagnosis
 A. DUODENAL BIOPSIES SHOWING PARTIAL VILLOUS ATROPHY WITH INCREASE IN MUCOSAL AND EPITHELIAL LYMPHOCYTES SUGGESTIVE OF CELIAC DISEASE.
SUGGEST RESULTS OF BLOOD TESTS AND PATIENT'S RESPONSE TO GLUTEN FREE DIET FOR A DEFINITIVE DIAGNOSIS.
B. GASTRIC BIOPSY SHOWING ANTRAL MUCOSA WITH MILD CHRONIC GASTRITIS.

I had my bloodwork done today and all numbers are within normal range so I’m confused whether it is celiac or not? Or wondering if the bloodwork is a false negative? I was supposed to start the gluten-free diet this week but wondering if I need to hold off? My doctor takes ages to get back with follow ups. 

Bloodwork: 

IgG results: 12.54 reference: 6.00-16.00g/L

IgM results: 1.13 reference: 0.30-2.30 g/L

Immunoglobulin IgA results: 1.82 reference: 0.54-4.17 g/L 

I’ll ultimately wait for the doctor to respond but unsure if i should go gluten free in the meantime or not?

Thanks! 

Hi Emily. I had exactly the same situation as yours and I remember asking the same question here almost 2 years ago:). I had endoscopy and colonoscopy because of occult blood in my stool and very low ferritin and iron level in my blood. I was so scared and I had thoughts about colon cancer. Endoscopy results were mild chronic gastritis and partial atrophy of mucosa and diagnose was celiac disease. So my doctor ordered celiac panel antibodies after endoscopy and results were negative. Then he ordered celiac genetic test and I got positive genes for celiac disease so after that I was officially diagnosed with celiac disease . After that I had my son tested for celiac and he keeps getting negative celiac panel for 2 years in a row but I’m kind of not trusting those antibody tests. 
Saba

[Emily TB]

Update: It seems I jumped the gun on interpreting my bloodwork. It just updated today and my TTG was >250 (reference <12) Thanks everyone who attempted to help, I have officially been diagnosed and time to start the gluten-free lifestyle! 

On 6/3/2023 at 10:06 AM, trents said:

Emily, the blood work done and posted results are odd and seem deficient. The most common blood antibody test run to detect celiac disease, the tTG-IGA, appears to be missing unless the "Immunoglobulin IgA results" is an oddly worded reference to it. The tTG-IGA is the favorite of doctors and the #1 test that should be run because it combines good sensitivity with good specificity. Was the testing done by a primary care doc or a GI specialist or was it done by say, a holistic medicine practitioner?

Hi again, you were right. my results updated today with TTG >250 (reference <12) 😅. Thanks so much for all your insight, I definitely jumped the gun on this one. Appreciate the help! 

[trents]

4 minutes ago, Emily TB said:

Update: It seems I jumped the gun on interpreting my bloodwork. It just updated today and my TTG was >250 (reference <12) Thanks everyone who attempted to help, I have officially been diagnosed and time to start the gluten-free lifestyle! 

Hi again, you were right. my results updated today with TTG >250 (reference <12) 😅. Thanks so much for all your insight, I definitely jumped the gun on this one. Appreciate the help! 

This might help you get off on the right foot as far as the gluten-free lifestyle: https://www.celiac.com/celiac-disease/the-gluten-free-diet-101-a-beginners-guide-to-going-gluten-free-r1640/