Partially positive blood test, negative biopsy, celiac symptoms??

[maybeceliac3456]

Hello,

First of I'm 24 years old slightly underweight male. I have had many years problems with my stomach, mainly that the stool has been soft 95% of the time. It's normal maybe once in two months.

Recently I started to develop serious hair loss so straight to doctor I went.  There I told my symptoms to the doctor, soft stool, a lot of skin problems (atopic), bumps in my nails, dizziness and headaches. He send me to blood test to screen celiac.

 

The blood test results were:

DGP ac. IgA (Method EIA)           35U/ml    reference 0-10U/ml (positive)
DGP ac. IgG (Method EIA)          46U/ml    reference 0-10U/ml (positive)

Anti-transglutaminase IgA              3,6U/ml     reference <25U/ml  (negative)
Anti-transglutaminase IgG              7,4U/ml     reference <25U/ml   (negative)

 

Also my liver test was little bit higher which is also normal with celiac.

GPT 13,3U/L reference <12U/L

Hematocrit was also low 39% and white blood cells were too low also.

After screening I tried gluten free diet for 4 days. Immediately my stool was perfect for those 4 days. (really happy lol)

After this doctor wanted to take a biopsy. Results were negative. Now the doctor switched his opinion that I do not have celiac, but have gastric (I had too much stomach acid). I googled symptoms of gastric and I don't have any symptoms which are associated with gastric.  And the 2 of the samples were from stomach and 4 from first section of the small intestine.

I don't know, I was so sure I had celiac and it would have explained all the other symptoms also that I have.. The doctor wants that I try gluten-free diet for one month now and after that I will see him again. I just would like to be 100% sure that I have celiac and not to guess.

[cyclinglady]

1 hour ago, maybeceliac3456 said:

Hello,

First of I'm 24 years old slightly underweight male. I have had many years problems with my stomach, mainly that the stool has been soft 95% of the time. It's normal maybe once in two months.

Recently I started to develop serious hair loss so straight to doctor I went.  There I told my symptoms to the doctor, soft stool, a lot of skin problems (atopic), bumps in my nails, dizziness and headaches. He send me to blood test to screen celiac.

 

The blood test results were:

DGP ac. IgA (Method EIA)           35U/ml    reference 0-10U/ml (positive)
DGP ac. IgG (Method EIA)          46U/ml    reference 0-10U/ml (positive)

Anti-transglutaminase IgA              3,6U/ml     reference <25U/ml  (negative)
Anti-transglutaminase IgG              7,4U/ml     reference <25U/ml   (negative)

 

Also my liver test was little bit higher which is also normal with celiac.

GPT 13,3U/L reference <12U/L

Hematocrit was also low 39% and white blood cells were too low also.

After screening I tried gluten free diet for 4 days. Immediately my stool was perfect for those 4 days. (really happy lol)

After this doctor wanted to take a biopsy. Results were negative. Now the doctor switched his opinion that I do not have celiac, but have gastric (I had too much stomach acid). I googled symptoms of gastric and I don't have any symptoms which are associated with gastric.  And the 2 of the samples were from stomach and 4 from first section of the small intestine.

I don't know, I was so sure I had celiac and it would have explained all the other symptoms also that I have.. The doctor wants that I try gluten-free diet for one month now and after that I will see him again. I just would like to be 100% sure that I have celiac and not to guess.

How many biopsies were taken during the endoscopy?  Most doctors take more than four.   What did the pathologist’s report indicate?  The small intestine is vast (bigger than a tennis court) so it is easy to miss damaged patches.   

I can tell you that I only was positive on the DGP IgA tests.  Even on follow-up tests.  It only takes one positive on the panel.  

 

 

[maybeceliac3456]

14 hours ago, cyclinglady said:

How many biopsies were taken during the endoscopy?

"2 of the samples were from stomach and 4 from first section of the small intestine."

 

14 hours ago, cyclinglady said:

What did the pathologist’s report indicate?

No damage observed in villi and no helico bacteria.

 

I know the small intestine is big and that biopsy can be negative but now that I have read I'm more confused about the blood test.

According to this site: https://labtestsonline.org/tests/celiac-disease-antibody-tests#

My case got a result: Possible celiac disease (may be seen in children less than 3 years old)

[tessa25]

In your position I would try going 100% strict gluten free for three months and retest the high blood test numbers to see if they start going down. Strict is easiest if you eat a homemade  meat, veggies, potatoes diet for the three months and avoid processed food to insure you do not eat any hidden gluten.

 

[cyclinglady]

There is a reason there are still several antibodies tests for celiac disease.  None are perfect.  For a while, the TTG was considered superior.  In fact many diagnostic algorithms recommend started with just the TTG IgA and an IgA deficiency test.  Those two tests catch most celiacs and it is cost efficient.  Even the University of Chicago’s previous website recommended this.  Now the University recommends one or more of the tests.  Why?  Because they were not catching all the celiacs.  

Like I said, I only had the full panel at least five times.   I have only had a positive on the DGP IgA and I am close to 60 years old.  Five years in and I still can not really explain my test results and I have researched it.  I can share, if this has any value, that my last DGP IgA was still very elevated despite a follow up endoscopy/biopsies revealing a healed gut.  So, maybe you are just starting damage or it is located  further down the intestinal tract.  

My niece went to four Gastroenterologists before she finally got her Crohn’s diagnosis.  Celiac disease was firmly ruled out.  Nothing found during scopes/biopsies.   Severe damage was finally caught on a pill camera located far beyond the reach of the scopes.  She did not even present with typical Crohn’s symptoms.  

Why share this?  Because not everyone presents with classic symptoms (I had no GI symptoms) nor do they consistently test the same and that can be applied to many illnesses.  

Trial the diet as Tessa suggested.  It can not hurt!  

[maybeceliac3456]

3 hours ago, cyclinglady said:

There is a reason there are still several antibodies tests for celiac disease.  None are perfect.  For a while, the TTG was considered superior.  In fact many diagnostic algorithms recommend started with just the TTG IgA and an IgA deficiency test.  Those two tests catch most celiacs and it is cost efficient.  Even the University of Chicago’s previous website recommended this.  Now the University recommends one or more of the tests.  Why?  Because they were not catching all the celiacs.  

Like I said, I only had the full panel at least five times.   I have only had a positive on the DGP IgA and I am close to 60 years old.  Five years in and I still can not really explain my test results and I have researched it.  I can share, if this has any value, that my last DGP IgA was still very elevated despite a follow up endoscopy/biopsies revealing a healed gut.  So, maybe you are just starting damage or it is located  further down the intestinal tract.   

My niece went to four Gastroenterologists before she finally got her Crohn’s diagnosis.  Celiac disease was firmly ruled out.  Nothing found during scopes/biopsies.   Severe damage was finally caught on a pill camera located far beyond the reach of the scopes.  She did not even present with typical Crohn’s symptoms.  

Why share this?  Because not everyone presents with classic symptoms (I had no GI symptoms) nor do they consistently test the same and that can be applied to many illnesses.  

Trial the diet as Tessa suggested.  It can not hurt!  

Thank you for long and helpful reply!
I guess I will go with gluten free diet now and check the same tests after few months. I have the feeling that I have celiac but the damage was indeed out of reach for endoscope. I would just prefer official diagnose.