Positive for “2 markers” in blood test. Requesting an endoscopy.

[Lauren1992]

Hi everyone. My doctor did a blood test for all autoimmune indicators (I have swollen fingers /osteoarthritis) and it came back positive for “2 celiac markers” And raised white blood cells (from allergens).
She said that she was happy with my blood results as “perfectly healthy people can have these results” and that if I wanted to test out anti inflammatory foods I can go ahead. 
We ended the phone call and I am now realising I’d like to press it further as it doesn’t sit right with me. I am reflecting as there feels like there’s always something wrong with me, an ache, a headache or rushing to the toilet with loose stools (which I’ve thought were the norm). Should I call and ask for an endoscopy? Or do you have to make appointments? 
What should I say to my doctor to press this further as I would like a definitive no to celiac and I don’t want her to think I don’t trust her professional judgement. Thank you!!  

[plumbago]

You didn't post the actual results or the tests, so it's hard to speak more definitively, but any positive test on a Celiac panel is generally indicative of celiac disease. I would go online and print out something from one of the Celiac disease societies stating that and send her a fax asking for an endoscopy, if that's what you want.

[trents]

Lauren, welcome to the forum! 

Before you do anything more, can you be more specific about the "2 celiac markers." Do you have access online to your autoimmune indicator test results. Before we can advise you we need to know the specific tests that the physician is referring to with elevated celiac markers. Can you post them for us? Headaches and diarrhea are two classic indicators of celiac disease. And continue to eat regular amounts of gluten until all testing for celiac disease is done. Otherwise, you will invalidate the tests.

Perhaps this will help: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The centerpiece test for celiac disease is the tTG-IGA antibody test. It combines good specificity with good sensitivity. Many doctors order only that one when checking for celiac disease. But some people who have celiac disease have immune systems that respond atypically to gluten-caused inflammation so running full panel is preferrable.

If you post the test results, please make sure you post the reference ranges as well as the numbers don't mean much unless we know what reference range values the particular lab analyzing the samples used to rate what is normal (negative) vs. what is high (positive).

Edited November 28, 2021 by trents

[Lauren1992]

  On 11/28/2021 at 2:31 PM, trents said:

Lauren, welcome to the forum! 

Before you do anything more, can you be more specific about the "2 celiac markers." Do you have access online to your autoimmune indicator test results. Before we can advise you we need to know the specific tests that the physician is referring to with elevated celiac markers. Can you post them for us? Headaches and diarrhea are two classic indicators of celiac disease. And continue to eat regular amounts of gluten until all testing for celiac disease is done. Otherwise, you will invalidate the tests.

Perhaps this will help: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The centerpiece test for celiac disease is the tTG-IGA antibody test. It combines good specificity with good sensitivity. Many doctors order only that one when checking for celiac disease. But some people who have celiac disease have immune systems that respond atypically to gluten-caused inflammation so running full panel is preferrable.

If you post the test results, please make sure you post the reference ranges as well as the numbers don't mean much unless we know what reference range values the particular lab analyzing the samples used to rate what is normal (negative) vs. what is high (positive).

Expand Quote  

 

Hi Trent, thank you so much for getting back to me. My results have only just been received in the mail today, the reference range values are in brackets, however, they do not say what is high they just give a range they are as follows:

Coeliac serology

Deamidated Gliadin lgA            11     U/mL (<15)

Deamidated Gliadin lgG           *17    U/mL (<15)

Tissue Transglutaminase lgA   *50     U/mL (<15)

Tissue Transglutaminase lgG      7     U/mL (<15)

 

It literally says on my report "One elevated marker may occur without disease wheras two or more elevated (at four times the cutoff level) markers strongly predict coeliac disease which can be confirmed by biopsy"

My level of 50 is CLOSE to four times...

 

Haematology

Eosinophils    *1.00      x10^9/L    (0.0-0.05)

 

C Reactive Protein (High Sens)

CRP    *8.3  mg/L   (0.0 -5.0)

 

and another unrelated (or is it?)

Biochemistry

Gamma GT   *62   U/L   (5-35)

[trents]

With a tTG-IGA of 50 the odds are definitely in favor of you having celiac disease. We have had many forum posters with much lower scores than that get diagnosed with celiac disease. That particular test is pretty specific for celiac disease. 

About 18% of celiacs have elevated liver enzymes. I was one of them and it was what eventually led to my celiac diagnosis. Your high Gamma GT might suggest your liver is under stress.

Your high CRP suggest some kind of inflammatory process going on. Celiac disease is an autoimmune inflammatory process that slow destroys the "villi" that line the small bowel. The small bowel villi are the nutrient absorbing surface of the intestinal track. I would suggest you get some testing done to check vitamin D levels, iron and B12 levels in your body. Untreated celiac disease typically leads to vitamin and mineral deficiencies. 

It would be wise to get an endoscopy/biopsy as soon as you can. It is the gold standard for diagnosing celiac disease. Keep eating regular amounts of gluten between now and the endoscopy if you and your doctor choose that test for confirmation. Cutting back on gluten may compromise the results.

[Lauren1992]

  On 11/29/2021 at 3:21 PM, trents said:

With a tTG-IGA of 50 the odds are definitely in favor of you having celiac disease. We have had many forum posters with much lower scores than that get diagnosed with celiac disease. That particular test is pretty specific for celiac disease. 

About 18% of celiacs have elevated liver enzymes. I was one of them and it was what eventually led to my celiac diagnosis. Your high Gamma GT might suggest your liver is under stress.

Your high CRP suggest some kind of inflammatory process going on. Celiac disease is an autoimmune inflammatory process that slow destroys the "villi" that line the small bowel. The small bowel villi are the nutrient absorbing surface of the intestinal track. I would suggest you get some testing done to check vitamin D levels, iron and B12 levels in your body. Untreated celiac disease typically leads to vitamin and mineral deficiencies. 

It would be wise to get an endoscopy/biopsy as soon as you can. It is the gold standard for diagnosing celiac disease. Keep eating regular amounts of gluten between now and the endoscopy if you and your doctor choose that test for confirmation. Cutting back on gluten may compromise the results.

Expand Quote  

Thank you for such a well detailed reply! I had recearched each specific item and I honestly don’t know what I’m talking about but I don’t drink, nor smoke and I feel my CRP may be high from gluten. It’s the only thing I can think of unless my diet is not healthy enough (and I feel it is)…

Thank you. I have requested my doctor call me back and I’m asking her for an endoscopy. Do you have to have a colonoscopy as well? 
 

If she says no I am going to take my blood work to another doctor who will refer me. It’s just a lot for me as I’m not a confrontational person so I’m a bit nervous contesting my doctor. Haha, fingers crossed! 

[Lauren1992]

In addition to that:

Active B12       106   pmol/L     (>35).

Vitamin B12     294   pmol/L     (135-650)

Serum Folate    28.2  nmol/L     (>7.0)

Iron                 21.2  umol/L    (5.0-30.0)

 

None of these levels were marked * and seem to be within the normal ranges, so that is really interesting.

 

 

[trents]

  On 11/29/2021 at 8:11 PM, Lauren1992 said:

Thank you for such a well detailed reply! I had recearched each specific item and I honestly don’t know what I’m talking about but I don’t drink, nor smoke and I feel my CRP may be high from gluten. It’s the only thing I can think of unless my diet is not healthy enough (and I feel it is)…

Thank you. I have requested my doctor call me back and I’m asking her for an endoscopy. Do you have to have a colonoscopy as well? 
 

If she says no I am going to take my blood work to another doctor who will refer me. It’s just a lot for me as I’m not a confrontational person so I’m a bit nervous contesting my doctor. Haha, fingers crossed! 

Expand Quote  

I would not bother with a colonoscopy unless you are having additional bowel problems from what you described in your original post. The "rushing to the toilet" could easily be explained by celiac disease. It concerns me that your doctor said "perfectly healthy people can have these results." I do not think that is true. I would consider connecting with another physician who possesses more knowledge about celiac disease. There is a remarkable amount of ignorance with regard to celiac disease in the medical community at large, particularly with older physicians. Most of us celiac veterans will tell you we usually have to take our doctors by the hand to get the tests run we need in order to get a proper diagnosis. Many older physicians don't take celiac disease seriously and will just blow you off. Respectful assertiveness and going armed with information are keys in this.

You might find this helpful and something to take with you for your appointment: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Your iron and vitamin levels (at least the ones tested) look good. Perhaps you have caught this early.

Oh, don't go on a gluten free diet until after all testing is done. You don't want healing to take place before the testing, whether blood antibody tests or endoscopy.

Edited November 29, 2021 by trents

[Lauren1992]

  On 11/29/2021 at 8:24 PM, trents said:

I would not bother with a colonoscopy unless you are having additional bowel problems from what you described in your original post. The "rushing to the toilet" could easily be explained by celiac disease. It concerns me that your doctor said "perfectly healthy people can have these results." I do not think that is true. I would consider connecting with another physician who possesses more knowledge about celiac disease. There is a remarkable amount of ignorance with regard to celiac disease in the medical community at large, particularly with older physicians. Most of us celiac veterans will tell you we usually have to take our doctors by the hand to get the tests run we need in order to get a proper diagnosis. Many older physicians don't take celiac disease seriously and will just blow you off. Respectful assertiveness and going armed with information are keys in this.

You might find this helpful and something to take with you for your appointment: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Your iron and vitamin levels (at least the ones tested) look good. Perhaps you have caught this early.

Oh, don't go on a gluten free diet until after all testing is done. You don't want healing to take place before the testing, whether blood antibody tests or endoscopy.

Expand Quote  

Update! My doctor finally returned my call. She said she can’t refer me for an endoscopy, and that it would have to be an endoscopy if it was anything like that..

She gave me a blood work referral which says please test coeliac serology, ANA HLA typing, DQ2, DQ8. Five years ago my ANA was positive/detected and this last test it was not detected. She has told me to have the test in January and to go crazy and hard on the gluten for two weeks before this blood test and we will go from there.  She also told me to try have two weeks OFF of gluten prior to see how it makes me feel. 
I am so overwhelmed 😬

[trents]

  On 12/2/2021 at 9:35 AM, Lauren1992 said:

Update! My doctor finally returned my call. She said she can’t refer me for an endoscopy, and that it would have to be an endoscopy if it was anything like that..

She gave me a blood work referral which says please test coeliac serology, ANA HLA typing, DQ2, DQ8. Five years ago my ANA was positive/detected and this last test it was not detected. She has told me to have the test in January and to go crazy and hard on the gluten for two weeks before this blood test and we will go from there.  She also told me to try have two weeks OFF of gluten prior to see how it makes me feel. 
I am so overwhelmed 😬

Expand Quote  

Laruen, see my bold. What you typed doesn't make sense. 

The DQ2, DQ8 are genes that have been identified with celiac so far and do not establish that you have celiac disease but only that you have the potential for it. For the genes to be expressed in actual celiac disease there has to be a triggering stress factor such as a viral infection. Otherwise they are latent. Many people have the genetic potential but never develop celiac disease. There are also reports of people who do not have either of those two genes but have celiac disease so there may be other genes involved that science does not yet know about. Recently, a probable third gene was discovered. 

An ANA is a very non-specific test for autoimmune activity. It could point to celiac disease but also to many other autoimmune diseases.

It sounds to me you need to seek out a different doctor.

[trents]

Did your physician give any justification for not being able to order an endoscopy/biopsy?

[Lauren1992]

  On 12/2/2021 at 3:05 PM, trents said:

Laruen, see my bold. What you typed doesn't make sense. 

The DQ2, DQ8 are genes that have been identified with celiac so far and do not establish that you have celiac disease but only that you have the potential for it. For the genes to be expressed in actual celiac disease there has to be a triggering stress factor such as a viral infection. Otherwise they are latent. Many people have the genetic potential but never develop celiac disease. There are also reports of people who do not have either of those two genes but have celiac disease so there may be other genes involved that science does not yet know about. Recently, a probable third gene was discovered. 

An ANA is a very non-specific test for autoimmune activity. It could point to celiac disease but also to many other autoimmune diseases.

It sounds to me you need to seek out a different doctor.

Expand Quote  

My apologies, she said it would have to be a colonoscopy. Which is strange because all my research has lead to endoscopies only.

This is where I am confused! I should take my bloodwork and go to another doctor to see a specialist.

She said we will discuss a colonoscopy after the results for the next bloodwork takes place.

I wish I had answers now.

[RMJ]

  On 12/2/2021 at 8:06 PM, Lauren1992 said:

My apologies, she said it would have to be a colonoscopy. Which is strange because all my research has lead to endoscopies only.

This is where I am confused! I should take my bloodwork and go to another doctor to see a specialist.

She said we will discuss a colonoscopy after the results for the next bloodwork takes place.

I wish I had answers now.

Expand Quote  

You absolutely need a different doctor.  The standard of care is to do an endoscopy to follow up a positive TTG or DGP test.  Colonoscopies are NOT used to diagnose celiac disease.

[RMJ]

Here are four medical journal articles that outline how to diagnose celiac disease.  They all recommend duodenal (NOT colon) biopsies after a positive TTG test.  The American College of Gastroenterology guidelines say that the gene test isn’t terribly useful.

Perhaps you could ask your doctor why she won’t refer you for an endoscopy when that is the recommendation of both the American College of Gastroenterology AND the American Gastroenterological Association after positive serology?

If you’re not in the US I can find British or European guidance, if that would be more persuasive for your doctor.

Celiac Disease Diagnosis and Management

Epidemiology, Presentation and Diagnosis of Celiac Disease

American College of Gastroenterology Clinical Guidelines: Diagnosis and Management of Celiac Disease

Americal Gastroenterological Association Clinical Practice Update on Diagnosis and Monitoring of Celiac Disease-Changing Utility of Serology and Histologic Measures: Expert Review.

[Lauren1992]

  On 12/3/2021 at 10:16 PM, RMJ said:

Here are four medical journal articles that outline how to diagnose celiac disease.  They all recommend duodenal (NOT colon) biopsies after a positive TTG test.  The American College of Gastroenterology guidelines say that the gene test isn’t terribly useful.

Perhaps you could ask your doctor why she won’t refer you for an endoscopy when that is the recommendation of both the American College of Gastroenterology AND the American Gastroenterological Association after positive serology?

If you’re not in the US I can find British or European guidance, if that would be more persuasive for your doctor.

Celiac Disease Diagnosis and Management

Epidemiology, Presentation and Diagnosis of Celiac Disease

American College of Gastroenterology Clinical Guidelines: Diagnosis and Management of Celiac Disease

Americal Gastroenterological Association Clinical Practice Update on Diagnosis and Monitoring of Celiac Disease-Changing Utility of Serology and Histologic Measures: Expert Review.

Expand Quote  

Thank you for joining in the discussion! 
Yes, all my research has pointed to an endoscopy as well. I feel like taking my blood work to another doctor and explaining it all. 

I am in Australia, I’d assume the standard of care wouldn’t be dissimilar from worldwide and American guidelines? 

I believe she thinks that I am not experiencing a deficit in vitamins and have no severe symptoms so therefore I have nothing to worry about. 

I don’t want to be that ‘internet doctor’ but it appears she doesn’t really know. 

I am creating a journal of what I eat and symptoms, for example: two eggs on sourdough toast, a coffee and then sore stomach within half an hour and then going to the toilet.  Maybe I can get results with another doctor. 

[RMJ]

Perhaps something from this website would help to convince her.

Coeliac Australia

Or here, which says after a positive test diagnosis is confirmed by a small bowel biopsy.

Health Direct (from gov.au)

[trents]

  On 12/4/2021 at 10:43 PM, Lauren1992 said:

Thank you for joining in the discussion! 
Yes, all my research has pointed to an endoscopy as well. I feel like taking my blood work to another doctor and explaining it all. 

I am in Australia, I’d assume the standard of care wouldn’t be dissimilar from worldwide and American guidelines? 

I believe she thinks that I am not experiencing a deficit in vitamins and have no severe symptoms so therefore I have nothing to worry about. 

I don’t want to be that ‘internet doctor’ but it appears she doesn’t really know. 

I am creating a journal of what I eat and symptoms, for example: two eggs on sourdough toast, a coffee and then sore stomach within half an hour and then going to the toilet.  Maybe I can get results with another doctor. 

Expand Quote  

It is not uncommon for celiacs to develop other food intolerances and an egg intolerance is one of the most common.