Positive biopsy

[pothosqueen]

Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?

[trents]

Welcome to the celiac.com community @pothosqueen!

 

Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run?

To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.

[Scott Adams]

If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events.

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. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[Russ H]

16 hours ago, pothosqueen said:

Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?

What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility to coeliac disease it should be possible to give a diagnosis.

There is a bit more here:

Seronegative coeliac disease

[RMJ]

I agree with @trents that the IgA you listed sounds like a total IgA, not celiac-specific, if 114 is normal. 

Were any other antibody tests run?  

[pothosqueen]

Hi all. Thank you for the responses. I hope I’m responding right, lots of new things this week. I also thought it was a long shot to get any real responses. 

Clarifications — the positive biopsy was an accidental finding. I had an endoscopy as a precautionary measure. I was recently diagnosed with SMA syndrome and before surgery they wanted the upper endo to confirm no other problems were hiding. 
 

I had the bloodwork drawn after the biopsy came back positive. Celiac came out of left field. The result I have of 114 is for total IgA on scale of 70-400 mg/ml. There is allegedly another pending lab (they took 4 tubes, only IgA has resulted and I cannot see pending tests until tests are confirmed). 

[RMJ]

1 minute ago, pothosqueen said:

I had the bloodwork drawn after the biopsy came back positive. Celiac came out of left field. The result I have of 114 is for total IgA on scale of 70-400 mg/ml. There is allegedly another pending lab (they took 4 tubes, only IgA has resulted and I cannot see pending tests until tests are confirmed). 

Your total IgA is normal.  This test is run because if you are deficient in IgA the celiac specific IgA tests might not be valid (might not detect celiac disease). Hopefully some of those other tubes of blood will include other tests for celiac antibodies which might include Tissue transglutaminase (TTG) IgA and IgG, Deamidated gliadin (DGP) IgA and IgG, and Endomysial antibody (EMA).  They don’t all have to be positive to indicate celiac disease. Please let us know the results when you get them.  We will probably then say “welcome to the club you never wanted to join.”

[trents]

Just one thing I will add that you need to be aware of. If by some chance you had been avoiding gluten or eating less of it than what would be normal for most healthy people, the antibody results for celiac might still be negative. I understand that one of the symptoms of SMA syndrome is difficulty in eating because stuff isn't moving through like it should. Valid celiac antibody testing requires the consumption of normal/generous amounts of gluten for weeks/months ahead of the blood draw.

[pothosqueen]

50 minutes ago, trents said:

Valid celiac antibody testing requires the consumption of normal/generous amounts of gluten for weeks/months ahead of the blood draw.

This is a good point. The primary things I’ve been able to tolerate are crackers and pretzels and bread slices (also rice and potatoes but ntp). I’ve been loading up on gluten based snacks so the testing should be valid as far as I understand. 

[pothosqueen]

Second update: the tTG just came through. Scale is 0-4.99flu. My result is 108.47. 

[trents]

Yep, you've got celiac disease. That is a high score. In the U.K. you could have been diagnosed on the TTG-IGA score alone and not needed an endoscopy/biopsy. But I realize your physicians were not looking for celiac disease in the first place. But it also makes me wonder how much of your bowel issues are tied to celiac disease whose onset may actually have been years ago. Taking years to get a celiac diagnosis after onset is typical because the symptoms mimic so many other bowel diseases and many of us have "silent" celiac for years, meaning we have no or few symptoms until damage the small bowel lining becomes quite advanced and other symptoms, e.g. iron deficiency anemia, start showing up.

[pothosqueen]

Wow! Thank you @trents I  really appreciate the responses. This line of diagnosis has me questioning a lot of symptoms over the course of my life. Very validating and very much a bummer at the same time. 

[trents]

Would it be rude to ask your age?

[pothosqueen]

26F!

[trents]

Wow! You're pretty young to have a diagnosis of SMA syndrome.

But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems. 

It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.

[knitty kitty]

@pothosqueen,

Welcome to the tribe!

You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.  

There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.  

In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too.

Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.  

Best wishes for your recovery!  

Interesting Reading:

Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease

https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.

 

Edited January 8 by knitty kitty
Added link

[knitty kitty]

In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.  

Here's the full article link...

Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease

https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/