Mixed Messages From Doctors

[amahones]

Hello, I'm new to this whole Celiac thing but have had stomach issues for almost my entire life. At 30, I've finally started to have them looked into.

I had a Celiac blood work panel done by a GI doctor who was extremely unresponsive and won't explain anything to me. I do have an endoscopy scheduled with her for September, though. My PCP also tested me for Celiac (but not as thorough testing as the GI doctor's testing). All that's been said is that my results suggest I have the serological markers for Celiac disease and results support a diagnosis of Celiac.

In the meantime, I'm completely confused by all the information I've read online and am having trouble reading about it on my own so I was wondering if some of you who are more experienced could help me interpret my results and the likelihood of it actually being Celiac. AND - if it's NOT Celiac, what else could it be?

These were my first results by the GI doctor done in June:

Prometheus Celiac Serology:

TEST RESULT

DGP IgG: +

DGP IgA: -

TTG IgA: -

EMA IgA: +

Summary Interpretation: Results support a diagnosis of celiac disease; serological markers for celiac disease detected.

ASSAY RESULT

Deamidated Gliadin Peptide Antibody, IgG (DGP IgG) 8.4 EU/ml (ref range < 4.9 EU/ml)

Deamidated Gliadin Peptide Antibody, IgA (DGP IgA) 1.5 EU/ml (ref range <6.1EU/ml)

Anti-Human Tissue Transglutaminase IgA ELISA (TTG IgA): 8.4 U/ml (ref range < 10.3 U/ml)

Anti-Endomysial IgA IFA (EMA IgA) Positive (ref range: Negative)

Total Serum IgA by Nephelometry (total IgA): 109mg/dl (ref range 41-395 mg/dl)

Then, in August, my PCP doctor tested me just for TTG Ab IgA and I tested 40 (Moderate to Strong Positive) (ref range < 20 )

Does anyone have any answers/advice/opinions/suggestions? I know I'll find out for sure in about a month but in the meantime, it's causing me a lot of anxiety - mainly with wondering what else it could be if NOT celiac. Thanks.

(Also if it's relevant: I've suffered from severe eczema my entire life as well as asthma, and a lot of food allergies - I don't know if those would affect any of my test results.)

[beachbirdie]

  On 8/15/2012 at 3:17 PM, amahones said:

Hello, I'm new to this whole Celiac thing but have had stomach issues for almost my entire life. At 30, I've finally started to have them looked into.

I had a Celiac blood work panel done by a GI doctor who was extremely unresponsive and won't explain anything to me. I do have an endoscopy scheduled with her for September, though. My PCP also tested me for Celiac (but not as thorough testing as the GI doctor's testing). All that's been said is that my results suggest I have the serological markers for Celiac disease and results support a diagnosis of Celiac.

In the meantime, I'm completely confused by all the information I've read online and am having trouble reading about it on my own so I was wondering if some of you who are more experienced could help me interpret my results and the likelihood of it actually being Celiac. AND - if it's NOT Celiac, what else could it be?

These were my first results by the GI doctor done in June:

Prometheus Celiac Serology:

TEST RESULT

DGP IgG: +

DGP IgA: -

TTG IgA: -

EMA IgA: +

Summary Interpretation: Results support a diagnosis of celiac disease; serological markers for celiac disease detected.

ASSAY RESULT

Deamidated Gliadin Peptide Antibody, IgG (DGP IgG) 8.4 EU/ml (ref range < 4.9 EU/ml)

Deamidated Gliadin Peptide Antibody, IgA (DGP IgA) 1.5 EU/ml (ref range <6.1EU/ml)

Anti-Human Tissue Transglutaminase IgA ELISA (TTG IgA): 8.4 U/ml (ref range < 10.3 U/ml)

Anti-Endomysial IgA IFA (EMA IgA) Positive (ref range: Negative)

Total Serum IgA by Nephelometry (total IgA): 109mg/dl (ref range 41-395 mg/dl)

Then, in August, my PCP doctor tested me just for TTG Ab IgA and I tested 40 (Moderate to Strong Positive) (ref range < 20 )

Does anyone have any answers/advice/opinions/suggestions? I know I'll find out for sure in about a month but in the meantime, it's causing me a lot of anxiety - mainly with wondering what else it could be if NOT celiac. Thanks.

(Also if it's relevant: I've suffered from severe eczema my entire life as well as asthma, and a lot of food allergies - I don't know if those would affect any of my test results.)

With your positive EMA and positive DGP, the likelihood of celiac is hovering around 100%.

Not to mention your lifelong "eczema". Can you describe what your skin outbreaks look like? Perhaps you don't really have eczema, you could very well have a condition called Dermatitis Herpetiformis. That is usually diagnosed with biopsy, but you can go to the dermatitis herpetiformis forum and read through some of the topics as well as find a lot of pictures people have posted of their DH.

Welcome to the forum! You will meet many folks here who have lots of experience, and some who are more knowledgeable than most doctors about celiac. And it is a very friendly bunch, so don't be afraid to ask questions.

[amahones]

  On 8/15/2012 at 3:54 PM, beachbirdie said:

With your positive EMA and positive DGP, the likelihood of celiac is hovering around 100%.

Not to mention your lifelong "eczema". Can you describe what your skin outbreaks look like? Perhaps you don't really have eczema, you could very well have a condition called Dermatitis Herpetiformis. That is usually diagnosed with biopsy, but you can go to the dermatitis herpetiformis forum and read through some of the topics as well as find a lot of pictures people have posted of their DH.

Welcome to the forum! You will meet many folks here who have lots of experience, and some who are more knowledgeable than most doctors about celiac. And it is a very friendly bunch, so don't be afraid to ask questions.

Thanks for the quick reply. Hm... I don't know how to describe my skin problems but I'm fairly certain they're eczema (looks like eczema, and has been diagnosed by many, many dermatologists as eczema.). I just looked at some pictures of dermatitis herpetiformis and it doesn't look like what I have. I have read that Celiac disease can be correlated to eczema too, but I don't know if that is true or just speculation....

Also, what would it mean that the DGP IgA is negative?

[culinerdy]

I am also going through the same issue with my GI doctor. He is gone on vacation for a full month following my scope. I received my blood work and biopsy results from a nurse who cannot explain them to me. Since he is alone in his practice, I am stuck waiting.

I hope that we both can get our answers clarified soon!

[beachbirdie]

  On 8/15/2012 at 4:01 PM, amahones said:

Thanks for the quick reply. Hm... I don't know how to describe my skin problems but I'm fairly certain they're eczema (looks like eczema, and has been diagnosed by many, many dermatologists as eczema.). I just looked at some pictures of dermatitis herpetiformis and it doesn't look like what I have. I have read that Celiac disease can be correlated to eczema too, but I don't know if that is true or just speculation....

Also, what would it mean that the DGP IgA is negative?

It just means your body isn't making that particular antibody. It doesn't change that the positives are POSITIVE.

There are many classes and kinds of antibodies, you don't need all of them to have a positive diagnosis.

[MitziG]

The tests you were positive on are very specific to celiac disease. No doubt that you have it. Your biopsy may or may not agree as celiac is not always easy to spot. Even if your GI disagrees, you definitely have it. Please spend time on this forum and learn all you can. Ignorance about celiac, even amongst GI's, is rampant.

As for eczema, yes, celiac can cause it, same with asthma, allergies and a myriad other ailments you wouldn't suspect. A lot of people get relief from those issues with a gluten-free diet, even those who aren't celiacs. Be sure to continue your normal diet until after your endoscopy though!

[amahones]

  On 8/17/2012 at 8:13 AM, MitziG said:

The tests you were positive on are very specific to celiac disease. No doubt that you have it. Your biopsy may or may not agree as celiac is not always easy to spot. Even if your GI disagrees, you definitely have it. Please spend time on this forum and learn all you can. Ignorance about celiac, even amongst GI's, is rampant.

As for eczema, yes, celiac can cause it, same with asthma, allergies and a myriad other ailments you wouldn't suspect. A lot of people get relief from those issues with a gluten-free diet, even those who aren't celiacs. Be sure to continue your normal diet until after your endoscopy though!

Thanks for your response! Very helpful and good to know about how the biopsy may not detect it. I was wondering what I would do if the biopsy came back negative. But I guess I will go gluten-free after I have it. The thing is - even though I know gluten is hidden in a lot of foods - I don't typically consume much anyway. Probably less than the average person. I'm very used to eating my foods very plain and basic due to food allergies and I don't eat processed foods and cook everything myself for the most part! I know you're supposed to keep eating gluten until the biopsy though.

So the tests results that are very specific to Celiac disease - can they be positive if you have something else? For example, I had read that the TTG IgA can be elevated in people who have a different autoimmune disease. Is that even likely? The rest of my blood work was mostly normal except red blood cell count was a little low.