Positive Blood Test, Negative Biopsy - So Confused

[amahones]

Okay, I posted here about a month ago detailing my blood work. It was as follows:

"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 )"

I should mention that during this entire time - probably for past couple years in general, my consumption of foods containing gluten drastically decreased because I stopped eating processed foods. There were entire weeks where I wouldn't have an obvious source of gluten - like a piece of bread or pizza. I started trying to have more after the blood work and before the endoscopy but even still, I probably didn't eat a ton of it.

My biopsy came back negative for Celiac disease. She took three biopsies in total - one of my small intestine, one of part of my esophagus, and one of ... something else (sorry, I actually left the result at work so I don't have it in front of me but it was essentially all "normal"). Basically, it said my intestines were fine, I had some chronic inactive inflammation in my esophagus, though. She recommended that I go gluten free. It's impossibly difficult to ask her questions though, or reach her. I asked my primary doctor what else my elevated TTG IgA could indicate and he said it's pretty specific to Celiac disease and that he also recommends going gluten free.

My general symptoms have been on and off stomach issues for as long as I can remember that have significantly worsened in the past year or two. I have had anemia but no other deficiencies that I'm aware of. Eczema since I was a child (which I mostly outgrew but it got worse in the past few years). A lot of non-specific symptoms that have worsened in the past couple years: anxiety, brain fog, peripheral neuropathy, headaches, depression). My CBC doesn't indicate any other problems.

I have a bunch of true food allergies (peanuts, shellfish, most tree nuts, sesame) and seasonal allergies and asthma and eczema. I have gone gluten free since the biopsy. However, I really do not want to restrict my diet even MORE if it's not necessary.

Overall, I am totally and completely confused. Do I have Celiac disease? Is it impossible to know? Am I just gluten-intolerant? WHAT ELSE CAN CAUSE THESE RESULTS? I've read vague answers about autoimmune diseases - diabetes (don't have), thyroid stuff (don't have), and liver stuff (don't have) causing elevated results on some of these blood tests. Could food allergies cause these results? Asthma/eczema are both sometimes considered autoimmune by some people. Could those cause it? I have been researching this stuff for days and am just totally flabbergasted. Other potentially relevant information is that my first cousin has Celiac disease. Again, I have no interest in restricting my diet even more than it already is due to food allergies, if it's not necessary. Trying to figure this out is so complicated, though.

If anyone could offer insight, I'd appreciate it.

[mushroom]

You are asking for certainty in an uncertain world. Without doing a full gluten challenge there is no way of knowing if you have celiac disease. And even if you did the challenge, the results could still be negative if you have non-celiac gluten intolerance. You don't mention if you feel better when eating gluten free (the link you posted did not work for me). You did say your symptoms have worsened in the last two years; is this when you eat gluten, or just generally?

At any rate, your symptoms would appear to be your only gauge of what you should do if you do not wish to do a challenge. Most of us are happy enough if our symptoms improve when we stop eating gluten - it is such a relief. However, you do have to be very strict about removing all gluten, not just most of it, or you will continue to have symptoms and do damage to your body. We have had others, though, who need the certainty of the piece of paper that tells them not to eat gluten. If you are one of those then I am very much afraid that your only option is the gluten challenge and cross your fingers

By the way, your doctor did not take enough biopsies - the minimum number is considered to be 6 due to the often patchy nature of the damage - it is easy to miss.

Yes, celiac is an autoimmune disease and if you continue to eat gluten you run the risk of developing other autoimmune diseases down the road. I have psoriatic arthritis which I assure you is no fun and developed late in life.

Only you can decide what is right for you - we cannot tell you what to do, just your options.

[amahones]

You are asking for certainty in an uncertain world. Without doing a full gluten challenge there is no way of knowing if you have celiac disease. And even if you did the challenge, the results could still be negative if you have non-celiac gluten intolerance. You don't mention if you feel better when eating gluten free (the link you posted did not work for me). You did say your symptoms have worsened in the last two years; is this when you eat gluten, or just generally?

At any rate, your symptoms would appear to be your only gauge of what you should do if you do not wish to do a challenge. Most of us are happy enough if our symptoms improve when we stop eating gluten - it is such a relief. However, you do have to be very strict about removing all gluten, not just most of it, or you will continue to have symptoms and do damage to your body. We have had others, though, who need the certainty of the piece of paper that tells them not to eat gluten. If you are one of those then I am very much afraid that your only option is the gluten challenge and cross your fingers

By the way, your doctor did not take enough biopsies - the minimum number is considered to be 6 due to the often patchy nature of the damage - it is easy to miss.

Yes, celiac is an autoimmune disease and if you continue to eat gluten you run the risk of developing other autoimmune diseases down the road. I have psoriatic arthritis which I assure you is no fun and developed late in life.

Only you can decide what is right for you - we cannot tell you what to do, just your options.

I thought I already responded to you, but it doesn't show up for some reason! In any case, thank you for your response and for pointing out that the link did not work. I edited the original entry to include my blood work results, rather than having the link.

I have only been gluten-free for a week and a half and I've been very diligent in checking everything, even my medications, chap stick, lotion. I have eaten at restaurants off a gluten-free menu, after asking about preparation, etc. but I guess it's possible that there has been cross-contamination. The only things I've noticed improvement on so far - which could be unrelated - is my eczema and nightmares which I was having constantly. I'd be okay with even a "probably" - I don't need absolute certainty, I guess. It's just frustrating to have to restrict my diet even more, beyond the food allergies, if it's not necessary. I wish my doctors were more responsive or had more knowledge or information about this. And even the internet, and these forums, with the wealth of information it provides, still sometimes has conflicting information, or information that is completely confusing to me.

Would getting my TTG IgA levels tested again after being gluten-free for 6 months be useful? Theoretically, that level should go down to a more normal level if the problem is Celiac?

[kareng]

I thought I already responded to you, but it doesn't show up for some reason! In any case, thank you for your response and for pointing out that the link did not work. I edited the original entry to include my blood work results, rather than having the link.

When you are new here, your first 10 posts must be approved by a moderator before they show up. This helps us keep the spam off the threads.

I put the second one on because both posts were bascially the same but the second has a question. So I figured that was the one to use.

[amahones]

When you are new here, your first 10 posts must be approved by a moderator before they show up. This helps us keep the spam off the threads.

I put the second one on because both posts were bascially the same but the second has a question. So I figured that was the one to use.

Oh, thanks! Sorry - I didn't realize that was for comments too I'll figure this all out eventually!

[Cara in Boston]

I had a positive blood test and negative biopsy. My doctor "officially" diagnosed me with "gluten intolerance". Whatever. My son was diagnosed by biopsy. I asked his doctor what she thought about my confusing results and she just laughed. "Of course you have it. You have symptoms, you tested positive, you feel better gluten free, celiac is in your family" . . . She said there are many reasons why the biopsy might be negative - not enough damage (yet), didn't biopsy the right place, human error, etc, etc.

The real test will be if your symptoms resolve on the gluten free diet. Give it a try (100% gluten free) for three months. A future blood test - after being gluten free - should come back negative.

Cara

[amahones]

I had a positive blood test and negative biopsy. My doctor "officially" diagnosed me with "gluten intolerance". Whatever. My son was diagnosed by biopsy. I asked his doctor what she thought about my confusing results and she just laughed. "Of course you have it. You have symptoms, you tested positive, you feel better gluten free, celiac is in your family" . . . She said there are many reasons why the biopsy might be negative - not enough damage (yet), didn't biopsy the right place, human error, etc, etc.

The real test will be if your symptoms resolve on the gluten free diet. Give it a try (100% gluten free) for three months. A future blood test - after being gluten free - should come back negative.

Cara

Thanks, Cara. From what I've read, there is a huge variance in how long it takes for symptoms to get better, so I will definitely give it a try for at least 3 months and get re-tested. How long did it take for you to notice improvement after going gluten-free?

[beachbirdie]

Okay, I posted here about a month ago detailing my blood work. It was as follows:

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 )"

My biopsy came back negative for Celiac disease. She took three biopsies in total - one of my small intestine, one of part of my esophagus, and one of ... something else

Overall, I am totally and completely confused. Do I have Celiac disease? Is it impossible to know? Am I just gluten-intolerant?

If anyone could offer insight, I'd appreciate it.

I'm not a doctor, but given the experiences of people here, I would say you should assume yourself to be celiac. Your positive EMA is a very specific test to celiac, it is a tissue damage antibody. Your DGP being positive shows your body is reacting negatively to gluten. You have symptoms. Not likely gluten intolerance, gluten intolerance causes symptoms but does NOT raise antibodies.

Your doctor did you no favors on the biopsy, she should have done 8 to 12 intestinal samples. Damage in the intestines can be patchy, and with only one sample the likelihood of her getting a good one is very tiny.

Welcome to the club. I think. You may not want to be "in"!