Negative blood tests, positive biopsy

[Bobbie73]

Hello, Is it possible to have negative blood tests, positive duodenum biopsy and still have Celiac? I ate a normal diet prior to my beginning symptoms of stomach pain and bloating. My gp put me on meds thinking it was acid reflux. After that didn’t work she sent me for an upper endoscopy. The scope found stomach inflammation and damage to my small intestine. He suspected Celiac and sent me for bloodwork. Between the scope and the bloodwork  I had reduced the amount of gluten in my diet but wasn’t completely gluten free. The bloodwork came back negative for Celiac. I’m still waiting to talk to him about my results but just to see what happened if I stopped eating gluten I cut it from my diet. So far, after a few days, my symptoms are disappearing. Any thoughts on diagnosis of Celiac? Anyone with a similar story? 

Edited February 1, 2020 by Bobbie73
Clarification

[sharon furminger]

1 hour ago, Bobbie73 said:

Hello, Is it possible to have negative blood tests, positive duodenum biopsy and still have Celiac? I ate a normal diet prior to my beginning symptoms of stomach pain and bloating. My gp put me on meds thinking it was acid reflux. After that didn’t work she sent me for an upper endoscopy. The scope found stomach inflammation and damage to my small intestine. He suspected Celiac and sent me for bloodwork. Between the scope and the bloodwork  I had reduced the amount of gluten in my diet but wasn’t completely gluten free. The bloodwork came back negative for Celiac. I’m still waiting to talk to him about my results but just to see what happened if I stopped eating gluten I cut it from my diet. So far, after a few days, my symptoms are disappearing. Any thoughts on diagnosis of Celiac? Anyone with a similar story? 

I was informed that prior to blood work for Celiac you should eat a donut or some other food that has gluten in it for a proper diagnosis. Being on a gluten diet prior to testing is going to throw the test off.

[cyclinglady]

Sure it is possible to have positive biopsies and no positives on the celiac blood panel for many reasons.  

1.  You were too gluten light or gluten free

2.  You did not get the complete panel which includes the DGP, EMA and TTG

3. About 10% of celiacs are seronegative 

The proof is in the biopsies and resolution of symptoms on the gluten-free diet.  Sounds like you are on  your way to healing!  

[kareng]

3 hours ago, sharon furminger said:

I was informed that prior to blood work for Celiac you should eat a donut or some other food that has gluten in it for a proper diagnosis. Being on a gluten diet prior to testing is going to throw the test off.

I’m sorry but this makes no sense.  You have to be on a  gluten containing diet to test for Celiac.  1 donut before a blood test is not enough .  
 

“

• Prior to blood testing we recommend 12 weeks of eating gluten.
• Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.”

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

Edited February 2, 2020 by kareng
To add links

[docaz]

Duodenal biopsies that show signs of inflammation for various diseases and often misdiagnosed by inexperienced pathologists. I am not saying that this is the case here but when my kids where diagnosed, I did call up the pathologist. I happen to know how to read histologic slides and indeed the diagnosis was made with some elements of being arbitrary because my son had high tTG but in absence of that, the biopsy might have been called duodenitis. For celiac disease to be diagnosed by biopsy, there are very specific cells that have to be found in the wall of the small intestine and without these cells, the diagnosis of celiac disease should not be established but it often does and situaions like this one are the most common ones. I would ask for the biopsy report (which you have a legal right to get) and discuss with your doctor (who might have just read the report without giving it more thought and this is also very common). 

This is an abstract worth discussing with your doctor

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4188954/

[cyclinglady]

@docaz

Great point about what the biopsies actually reveal.  

My family keeps records of all our medical history going back more than 25 years.  It is our right to our records and it has been so helpful when changing doctors, practices, etc.  

[Bobbie73]

Thank you everyone for your thoughts on this. It’s nice to have a support group. I’m hoping to speak with my GI this week. I’ll let you know what I ultimately find out. Until then no gluten for me. Whatever the diagnosis I don’t have symptoms if I’m not eating it! 

[Bobbie73]

8 hours ago, docaz said:

Duodenal biopsies that show signs of inflammation for various diseases and often misdiagnosed by inexperienced pathologists. I am not saying that this is the case here but when my kids where diagnosed, I did call up the pathologist. I happen to know how to read histologic slides and indeed the diagnosis was made with some elements of being arbitrary because my son had high tTG but in absence of that, the biopsy might have been called duodenitis. For celiac disease to be diagnosed by biopsy, there are very specific cells that have to be found in the wall of the small intestine and without these cells, the diagnosis of celiac disease should not be established but it often does and situaions like this one are the most common ones. I would ask for the biopsy report (which you have a legal right to get) and discuss with your doctor (who might have just read the report without giving it more thought and this is also very common). 

This is an abstract worth discussing with your doctor

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4188954/

This is what my doctor posted on my online chart...

A. Duodenum, endoscopic biopsy:

 

Small bowel mucosa with increased intraepithelial lymphocytes and minimal villous blunting. 

 

I really really really hope to talk with him this week. 

[cyclinglady]

3 hours ago, Bobbie73 said:

This is what my doctor posted on my online chart...

A. Duodenum, endoscopic biopsy:

 

Small bowel mucosa with increased intraepithelial lymphocytes and minimal villous blunting. 

 

I really really really hope to talk with him this week. 

That seems pretty clear to me that there was damage consistent with celiac disease (I am not a doctor), with an increase in the lymphocytes and villi damage.  But other things can cause damage.  

You could easily be seronegative or be like me, I test positive to only the DGP IgA.  No positives ever on the TTG or EMA.  But my diagnosis was a little clearer.  I was anemic (low iron) and I already had autoimmune thyroiditis.  

The bottom line is how you feel (and you already feel better) and other possible health markers.  Keep us posted!  

[Bobbie73]

14 minutes ago, cyclinglady said:

That seems pretty clear to me that there was damage consistent with celiac disease (I am not a doctor), with an increase in the lymphocytes and villi damage.  But other things can cause damage.  

You could easily be seronegative or be like me, I test positive to only the DGP IgA.  No positives ever on the TTG or EMA.  But my diagnosis was a little clearer.  I was anemic (low iron) and I already had autoimmune thyroiditis.  

The bottom line is how you feel (and you already feel better) and other possible health markers.  Keep us posted!  

I also have anemia, b-12 deficiency  and lactose intolerance. I hear those can also coincide with celiac. Thanks for your responses!

[cyclinglady]

2 minutes ago, Bobbie73 said:

I also have anemia, b-12 deficiency  and lactose intolerance. I hear those can also coincide with celiac. Thanks for your responses!

That seems like a slam dunk to me!  

I was lucky, with time, my lactose intolerance went away (but not other intolerances).  A huge chunk of the population is genetically predisposed to be lactose intolerant.  Then I was iron deficient.  That resolved within a few months of the gluten-free diet and remained resolved without supplementation.  

[docaz]

4 hours ago, Bobbie73 said:

This is what my doctor posted on my online chart...

A. Duodenum, endoscopic biopsy:

 

Small bowel mucosa with increased intraepithelial lymphocytes and minimal villous blunting. 

 

I really really really hope to talk with him this week. 

This biopsy report is actually very vague.  

First of all "lymphocytes" are all white blood cells but for celiac disease to be diagnosed specific white cells which are rarely present in the lining (neutrophils) and not just any lymphocytes have to be found in the lining. 

In addition "minimal" villous blunting is extremely subjective because the villi do not have the exact same shape in every individual. What is considered "minimal" blunting could be completely normal for someone else and the only way to be more definitive is to have a baseline image and then compare to follow up biopsies if necessary. Furthermore, blunting of the villi is not only caused by celiac disease. 

This is an article that shows how difficult it is to diagnose celiac disease in certain situations like this one:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2662202/

I would suggest to have a follow up discussion with your doctor and he/she might become more vague about the diagnosis. 

[cyclinglady]

2 minutes ago, docaz said:

This biopsy report is actually very vague.  

First of all "lymphocytes" are all white blood cells but for celiac disease to be diagnosed specific white cells which are rarely present in the lining (neutrophils) and not just any lymphocytes have to be found in the lining. 

In addition "minimal" villous blunting is extremely subjective because the villi do not have the exact same shape in every individual. What is considered "minimal" blunting could be completely normal for someone else and the only way to be more definitive is to have a baseline image and then compare to follow up biopsies if necessary. Furthermore, blunting of the villi is not only caused by celiac disease. 

This is an article that shows how difficult it is to diagnose celiac disease in certain situations like this one:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2662202/

I would suggest to have a follow up discussion with your doctor and he/she might become more vague about the diagnosis. 

True, but already the OP is feeling better on a gluten free diet.  That seems very promising.  If other lab tests improve, then this can help to solidify the diagnosis.  Genetic testing can also help with the diagnosis as well.  

[docaz]

20 minutes ago, cyclinglady said:

True, but already the OP is feeling better on a gluten free diet.  That seems very promising.  If other lab tests improve, then this can help to solidify the diagnosis.  Genetic testing can also help with the diagnosis as well.  

This is also true that if symptomatically a gluten-free diet helps, then continuing with it is a good thing. 

It is still important to know if one has celiac disease or a type of gluten-sensitivity. In case of gluten sensitivity, if one has accidentally ingested gluten, the implications are not as severe. In case of celiac disease, the implications are much more significant because of the many, many associated diseases that can range from mild skin lesions all the way to increased incidence some forms of intestinal malignancies (which fortunately even with celiac disease are extremely rare). 

For this reason, I think that physicians should be very careful when giving a diagnosis in a situation like this. The celiac panel blood tests are extremely sensitive and specific (not foolproof but pretty close and this is a major discussion in the professional field that is not completely resolved yet). In absence of positive blood test and in absence of a definitive positive biopsy, I do not think that the diagnosis of celiac disease can be conclusively established. A wrong diagnosis can have significant physical health, mental health and social implications.

[docaz]

41 minutes ago, cyclinglady said:

True, but already the OP is feeling better on a gluten free diet.  That seems very promising.  If other lab tests improve, then this can help to solidify the diagnosis.  Genetic testing can also help with the diagnosis as well.  

The suggestion of a genetic test is actually a very good because a negative test will automatically exclude the diagnosis of celiac disease.

If it comes out positive, the situation still remains vague because not everybody who has genetic markers will develop celiac disease but it is still good to know because the field of celiac disease is dynamic and we do not know yet how certain Information can be possibly used in the future. 

[cyclinglady]

@docaz

We do not even know if Bobbi 73 is actually seronegative.  He might not have had the complete celiac panel.  If my GI had not ordered the complete panel, my diagnosis might have been missed.  

What a doctor posts on a patient portal is often in layman’s terms.  At this point we do not have all the information at hand.

I am excited that Bobbie73 might have some closure.  A gluten free diet is not the end of then of the world.  I am thankful that I do not have a disease like cancer.  I do not need to take any drugs.  How great is that?    My doctors are aware that I can have other complications as a result of celiac disease.   My social life had not been impacted by celiac disease at all.  Though I do tend to instigate more physical activities instead of food activities with my friends which has been positive.  

My husband went gluten free 12 years per the advice of two medical doctors before my diagnosis.  He refuses to do a gluten challenge (we like paying our bills).    Does he have celiac disease?  Who knows?  But we all know that gluten makes him sick and he is happy to be gluten free.  

Our child does not have celiac disease (tested twice) so far.  I can imagine that a celiac disease diagnosis can be devastating to a child, especially a teen.  But again, celiac disease is manageable and getting proper support from medical, family and friends is critical.  

Let’s hope @Bobbie73gets some closure!  

[docaz]

55 minutes ago, cyclinglady said:

@docaz

We do not even know if Bobbi 73 is actually seronegative.  He might not have had the complete celiac panel.  If my GI had not ordered the complete panel, my diagnosis might have been missed.  

What a doctor posts on a patient portal is often in layman’s terms.  At this point we do not have all the information at hand.

I am excited that Bobbie73 might have some closure.  A gluten free diet is not the end of then of the world.  I am thankful that I do not have a disease like cancer.  I do not need to take any drugs.  How great is that?    My doctors are aware that I can have other complications as a result of celiac disease.   My social life had not been impacted by celiac disease at all.  Though I do tend to instigate more physical activities instead of food activities with my friends which has been positive.  

My husband went gluten free 12 years per the advice of two medical doctors before my diagnosis.  He refuses to do a gluten challenge (we like paying our bills).    Does he have celiac disease?  Who knows?  But we all know that gluten makes him sick and he is happy to be gluten free.  

Our child does not have celiac disease (tested twice) so far.  I can imagine that a celiac disease diagnosis can be devastating to a child, especially a teen.  But again, celiac disease is manageable and getting proper support from medical, family and friends is critical.  

Let’s hope @Bobbie73gets some closure!  

You are very fortunate that you can live a life that is not impacted much by a gluten-free diet and give your husband a hug for supporting you. For some this is not a big deal at all and for some (like my teenage kids) it is quite challenging.

I also hope that Bobbie gets some closure based on a proper diagnosis.

 

[Bobbie73]

Thank you everyone for the loads of information. It’s so hard waiting for a diagnosis. In addition to to the above info on my case I guess I still have one gnawing question I can’t get out of my mind... I wasn’t eating gluten (If i ingested any it was very small) for about a week and a half to two weeks prior to the blood tests. What is the likelihood that that was the cause of the negative bloodwork? I’m afraid I messed it up and I’ll be asked to do a gluten challenge to re do the bloodwork. I’m already feeling so much better gluten free!

[cyclinglady]

It is possible.  Anything is possible, but I think the likelihood is very low.   

Be sure to confirm which celiac tests were given and if you are Immunoglobulin A deficient.  If you look at most celiac disease diagnostic algorithms, they will just use the TTG test.  But it does not catch all celiacs.