Negative biopsy, positive blood test (included), GI says I have celiac disease

[DevJac]

I've had a variety of chest pains. My heart was checked, and looks good. I eventually saw a gastroenterologist (GI; is this the right abbreviation?) and had an endoscopy.

The endoscopy saw some irritation in my esophagus and upper intestine, but the biopsy came back negative for celiac disease. I guess this means they didn't see damaged villi? The gastroenterologist (GI) said this wasn't conclusive and recommended a blood test.

The blood test came back positive, or, at least, the GI interpreted it as positive. The GI told me I have celiac disease and talked to me about not eating gluten, shared some recommendations, and answered some questions I had. Is this the "diagnosis" everyone talks about? Or is there more to it?

For many years I've had a variety of strange pains in my chest which have gotten worse in recent years. Acid reflex medications have not helped much. This is the only symptom I have. I don't have any severe gastrointestinal problems.

My blood test results were as follows:

 

GLIADIN DP IGA (DEAMIDATED)    12    ELIA U/ML

GLIADIN DP IGG (DEAMIDATED)    7.5    ELIA U/ML

TTG IGA                                            42    ELIA U/ML

TTG IGG                                            9.3    ELIA U/ML

 

I have not yet tried a gluten free diet.

What do you all think? I originally believed the GI without question, but as I read more, I'm wondering if those blood measurements are really that high? Could there be another explanation? I did have shingles at the time (on my ribs, one side of my body only, probably not the celiac disease rash). I'm in my late 30s.

And let me say hello as a new forum member. I think I'll be hanging out here, trying to figure this out.

Thanks.

[trents]

DevJac, welcome to the forum!

We cannot comment on the antibody test numbers you shared because you did not include the reference ranges for negative/positive. They are not the same for every laboratory. Could you post back and include those?

Positive blood work and negative biopsy is not uncommon. And it can happen for several reasons:

1. New onset of celiac disease that has not had time to do significant damage to the villi.

2. Patchy damage such the biopsy missed damaged areas. This is common with inexperienced physicians who are not familiar with celiac disease. It is recommended that at least four samples be taken and from different areas of the duodenum to prevent this.

3. Going on a gluten-free or low gluten diet prior to the biopsy. The antibodies can persist in the system for weeks/months after withdrawing gluten from the diet allowing for positive antibody numbers. If the damage to the villi are minor that will heal first.

4. Something besides celiac disease is generating positive antibody tests. The chances of this being the case are not large but it does happen. Crohn's Disease is one of them.

Also, it is not unusual for people with celiac disease to have little or no GI distress. We call them silent celiacs. That may change, however, as damage to the villi gets worse over time.

[DevJac]

Thanks, each line of the test results say:

Range    0-10      Comment  7-10 Equivocal

[trents]

The two IGA tests are positive and the two IGG tests are negative. The centerpiece of antibody testing is the tTG-IGA and your number is not extremely high but solidly positive. There are two kinds of tests that can be run for celiac disease (antibody and biopsy of the small bowel lining) and you have had both run. I would assume you have celiac disease and have caught it at an early stage before much damage was done to the villi. There are no more tests to be run. And by the way, GERD is a common symptom of celiac disease.

I believe your next step is to commit to a gluten free diet. It is not good enough to cut out major sources of gluten like bread and pasta but you must endeavor to eliminate all of it, even that which is a minor ingredient in processed foods and that which comes from cross contamination. If at all possible, you will need to eliminate eating out. There is no way you can control what the kitchen staff does in preparing and handling food so as to eliminate cross contamination. This might help:

 

[RMJ]

After 6 months or more on the gluten free diet, you can see if the antibody levels decrease. If they do, that would be another indicator that you do indeed have celiac disease.  

[AlwaysLearning]

DevJac, I'm sorry to hear that you are facing some major life changes and don't seem to be ready for them, but congratulations for getting a diagnosis before your symptoms were too bad. You got lucky.

I spent two decades going to doctor after doctor after doctor, desperate for answers, only to be told there was nothing wrong with me, that I was making up my pain, or that I was hysterical. You getting your diagnosis before you were too far down the road of pain and damage is a huge win.

I understand that it can be a bit daunting to go gluten free, but it really is life changing ... in a good way. After you go gluten free, really pay attention in the first two weeks for changes in your body. I had all sorts of random symptoms that I thought were "normal", because I had had them all of my life, completely disappear. It was everything from no longer having insomnia to no longer having cold hands, from a calmer demeanor to improved hearing. Recognizing these changes and noting how much better you feel can make it a lot easier to stay gluten free and want to never go back.

Best of luck to you. You can do it!

[Hexagonal]

This is pretty much what happened to me. I was tested for celiac because my dad has it but I wasn't complaining of symptoms. I had a positive blood test, negative biopsy but the endoscopy showed inflammation and streaking. Got a message from my GI (appointment next month) that even with a negative biopsy it's probably celiac. Hopefully we'll both see unexpected improvement with a gluten-free diet!