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Mixed Messages From Doctors

amahones

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amahones Rookie
amahones
Posted

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.)

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beachbirdie Contributor
beachbirdie
Posted

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 Rookie
amahones
Posted
  • Author

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 Newbie
culinerdy
Posted

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 Contributor
beachbirdie
Posted

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 Enthusiast
MitziG
Posted

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 Rookie
amahones
Posted
  • Author

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.

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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