Positive bloodwork, negative biopsy

[Sarah Marie]

Hello! I’m hoping for some insight on this. My husband was experiencing horrible GI symptoms after everything he ate for a few years. He went to a gastroenterologist and had a bunch of bloodwork and it came back positive for Celiac. They ordered an endoscopy and biopsies and those came back negative. The specialist basically said you’re fine and feel free to eat gluten. My husband cut out all gluten after the endoscopy and his symptoms completely stopped immediately (and haven’t returned for 2 months with gluten-free diet). It just doesn’t sit right with us that his bloodwork was positive and they are completely dismissing that because the biopsy was negative. Where do we go from here? A functional/naturopath? What a frustrating process! Any insight would be appreciated!

[Scott Adams]

Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score. 

Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis.

The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results.

Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.

 

[trents]

Sarah Marie, can you specify exactly which blood tests were positive? Some of the tests are less specific for celiac disease per se but could indicate a type of reaction to gluten that doesn't cause damage to the lining of the small bowel. This is termed NCGS (Non Celiac Gluten Sensitivity).

[plumbago]

That wouldn't sit right with me either. I'm wondering if you can get a second opinion? Meaning - I guess - you'd need to call the doctor's office very quickly to tell them not to dispose of the specimens (they would have to call the pathologist, I'd guess) and to have them read by another pathologist. I'm just tossing that out as a possible idea, I don't really know if it would fly or not. But we do add-on blood tests after the blood's been collected all the time, so it may be worth it to ask if the specimens have still been preserved. Otherwise, in addition to what Scott said, it's possible that the biopsies were indeed negative which may just mean no damage yet. That's good. But that does not mean he doesn't have celiac disease. To be told that is kind of careless, if you ask me.

Edited June 3 by plumbago

[Sarah Marie]

His Celiac panel was:

Deamidated Gliadin Abs, IgA    15    (Neg)

Deamidated Gliadin Abs, IgG    31    (flagged high moderate to strong positive)

t- Transglutaminase (tTG) IgA    4     (flagged high weak positive)

t-Transglutaminase (tTG) IgG     6     (flagged high weak positive)

Endomysial Antibody IgA                        (neg) 

[trents]

Actually, Sarah Marie, I think you have your answer for all practical purposes. The bloodwork is positive and symptoms disappear upon cessation of gluten consumption. Is there a particular reason you need an official diagnosis? 

[Sarah Marie]

The main factor we’d like a conclusive diagnosis for is to know how strict we need to be for cross contamination. It’s one thing to be gluten free but it’s a whole other level of carefulness if celiac. We also have 3 kids in the house who still eat gluten.  I appreciate your insight with all of this! Thank you! 

[trents]

With your strong family history of celiac disease, you need to get your kids regularly tested. Two recent large studies, one done by the Mayo Clinic involving well over 300 people, pegged the incidence of celiac disease in first degree relatives of those with celiac disease at over 40%. This was proven by biopsy. Many or most of them were of the "silent" type. That is to say, they were largely asymptomatic and so to be diagnosed with celiac disease caught a lot of them quite by surprise. To be fair, this conflicts with older studies that put the figure at more like 10%. But I think you would be foolish not have a gluten free household. The chances are quite good that your children already have or will develop celiac disease. It typically takes 10 years or more for people to get a celiac diagnosis from the onset of symptoms because most of the time the symptoms are attributed to something else. Or, the symptoms were so subtle that by the time they became serious enough to warrant investigation, villous atrophy is quite advanced and attendant health issues are well underway. Would you want this to happen to your kids? And do you want to risk your own health through repeated cross contamination because several others in the household are still consuming wheat. And they are kids. How careful are they going to be? I hope this doesn't offend you but I sense you are a little in denial.

[Scott Adams]

16 hours ago, Sarah Marie said:

His Celiac panel was:

Deamidated Gliadin Abs, IgA    15    (Neg)

Deamidated Gliadin Abs, IgG    31    (flagged high moderate to strong positive)

t- Transglutaminase (tTG) IgA    4     (flagged high weak positive)

t-Transglutaminase (tTG) IgG     6     (flagged high weak positive)

Endomysial Antibody IgA                        (neg) 

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. You have 3 positive tests here, which make it extremely likely that you have celiac disease, especially with the family history, symptoms, etc. I think you ought to be very strict with your gluten-free diet going forward.