Do I Really Need A Biopsy?

[Krisgideon]

I recently had a blood test done:

Deamidated Gliadin Abs, IgA           Your Value: 317 units                 Standard Range: 0-19 unit               Flag: H

Deamidated Gliadin Abs, IgG.           Your Value: 20 units                   Standard Range: 0-19 units               Flag: H

t-Transglutaminase (tTG) |gA           Your Value: 26 U/mL                   Standard Range: 0-3 U/mL                 Flag:  H

t-Transglutaminase (tTG) IgG           Your Value:  <2 U/mL                   Standard Range: 0-5 U/mL

 

Endomysial Antibody IgA                   Your Value: Positive                   Standard Range: Negative                 Flag: A

Immunoglobulin A, Qn, Serum         Your Value: 149 mg/dL               Standard Range:  87-352 mg/dL

 

My insurance won’t cover it & I was quoted around $7,000.  From my DR:

“Yes, it is necessary to confirm the diagnosis. However, gastroenterology will likely be willing to make this diagnosis based on your symptoms and lab results. I still would like you to see gastroenterology to review the short-term and long-term consequences of celiac, how it should be managed and how it should be followed up. I do want to make sure that you are managed appropriately. You can declined doing an EGD and biopsy.”
 

This is all brand new to me & a little overwhelming.  For those more experienced with this, I would like your thoughts. 

[trents]

Welcome to the forum, Krisgideon!

Your blood work definitely looks like celiac disease. Sounds to me like the doc who ordered the bloodwork is saying the GI doc may not see a need to do an endoscopy/biopsy when he/she sees your blood work scores. So, you may only be looking at an office visit, resulting in the GI doc giving you a celiac disease diagnosis without the expense of a follow-up procedure. Can you afford an office visit? Does your insurance cover that much?

But the question is, do you need the rubber stamp in your chart official diagnosis to take your celiac status seriously and to seriously dive into the gluten free diet and stick to it? The biggest problem we see in this scenario is people rationalizing that those positive numbers might be due to something else and then falling off the gluten free wagon. Going gluten free usually has a big social cost to it.

What are your symptoms, anyway and how long have you been experiencing them? And what is your age if you don't mind me asking.

[Krisgideon]

6 minutes ago, trents said:

Welcome to the forum, Krisgideon!

Your blood work definitely looks like celiac disease. Sounds to me like the doc who ordered the bloodwork is saying the GI doc may not see a need to do an endoscopy/biopsy when he/she sees your blood work scores. So, you may only be looking at an office visit, resulting in the GI doc giving you a celiac disease diagnosis without the expense of a follow-up procedure. Can you afford an office visit? Does your insurance cover that much?

But the question is, do you need the rubber stamp in your chart official diagnosis to take your celiac status seriously and to seriously dive into the gluten free diet and stick to it? The biggest problem we see in this scenario is people rationalizing that those positive numbers might be due to something else and then falling off the gluten free wagon. Going gluten free usually has a big social cost to it.

What are your symptoms, anyway and how long have you been experiencing them? And what is your age if you don't mind me asking.

Thank you for your reply!  Good question- I don't feel like I need a rubber stamp...I think because the blood work seems to validate the diagnosis?  I have experienced extreme fatigue over years, anxiety, depression, bloating and constipation.   I'm 46.

I do think I can afford the office visit though.  

[trents]

As the PCP explained, even if the GI doc won't give you a diagnosis without the procedure, you're only out the cost of an office visit if you decline. Then you institute a gluten-free diet and see if your symptoms improve. Symptom improvement is really the proof of the pudding. This may be helpful when you start the gluten-free diet:

Attaining to a gluten-free lifestyle involves a learning curve but after a year or two you will develop a sixth sense of knowing what may contain gluten. Reading ingredient labels on things you buy is essential. You will also discern with experience how sensitive you are to minor amounts of gluten and whether or not you need to become OCD with avoiding any possibility of gluten, like when a label does not list gluten as an intentional ingredient but bares the disclaimer, "Produced in a facility that also handles dairy, nuts, wheat, ect." and also CC (cross contamination) in eateries from their cooking your gluten free food on the same grill, pot or pan used to cook gluten stuff. Things like that.

One caution here if you decide to go to a GI doc and that is you need to continue eating regular amounts of gluten until all tests are complete, including the endoscopy/biopsy. In this procedure they check for damage to the villi that line the small bowel caused by gluten inflammation. If you discontinue gluten for weeks or months before the biopsy, the villous lining heals and there' noting to see in the biopsy.

Edited August 21, 2023 by trents

[Krisgideon]

1 hour ago, trents said:

As the PCP explained, even if the GI doc won't give you a diagnosis without the procedure, you're only out the cost of an office visit if you decline. Then you institute a gluten-free diet and see if your symptoms improve. Symptom improvement is really the proof of the pudding. This may be helpful when you start the gluten-free diet:

Attaining to a gluten-free lifestyle involves a learning curve but after a year or two you will develop a sixth sense of knowing what may contain gluten. Reading ingredient labels on things you buy is essential. You will also discern with experience how sensitive you are to minor amounts of gluten and whether or not you need to become OCD with avoiding any possibility of gluten, like when a label does not list gluten as an intentional ingredient but bares the disclaimer, "Produced in a facility that also handles dairy, nuts, wheat, ect." and also CC (cross contamination) in eateries from their cooking your gluten free food on the same grill, pot or pan used to cook gluten stuff. Things like that.

One caution here if you decide to go to a GI doc and that is you need to continue eating regular amounts of gluten until all tests are complete, including the endoscopy/biopsy. In this procedure they check for damage to the villi that line the small bowel caused by gluten inflammation. If you discontinue gluten for weeks or months before the biopsy, the villous lining heals and there' noting to see in the biopsy.

Thank you so much for your thorough response!

[Beverage]

In 2015 i was diagnosed with celiacs based on high blood test and positive response to gluten free diet. On my own, I also got the dna test to help me accept the reality. I have an official letter from a naturopathic MD that says I have celiacs based on these3 things. No biopsy.

Just recently my step granddaughter (no blood relation to me) was diagnosed just based on high blood test. 

We are all in the USA

[Russ H]

Quote

However, gastroenterology will likely be willing to make this diagnosis based on your symptoms and lab results.

There's your answer. Your IgA tTG2 is almost 10x the standard range - that is almost certainly coeliac disease. In the UK, people 10x are diagnosed on blood results alone: people over the age of 55 or with concerning symptoms also receive an endoscopy, but that is to check for other things, not to diagnose coeliac disease.

[Krisgideon]

On 8/21/2023 at 4:20 PM, trents said:

As the PCP explained, even if the GI doc won't give you a diagnosis without the procedure, you're only out the cost of an office visit if you decline. Then you institute a gluten-free diet and see if your symptoms improve. Symptom improvement is really the proof of the pudding. This may be helpful when you start the gluten-free diet:

Attaining to a gluten-free lifestyle involves a learning curve but after a year or two you will develop a sixth sense of knowing what may contain gluten. Reading ingredient labels on things you buy is essential. You will also discern with experience how sensitive you are to minor amounts of gluten and whether or not you need to become OCD with avoiding any possibility of gluten, like when a label does not list gluten as an intentional ingredient but bares the disclaimer, "Produced in a facility that also handles dairy, nuts, wheat, ect." and also CC (cross contamination) in eateries from their cooking your gluten free food on the same grill, pot or pan used to cook gluten stuff. Things like that.

One caution here if you decide to go to a GI doc and that is you need to continue eating regular amounts of gluten until all tests are complete, including the endoscopy/biopsy. In this procedure they check for damage to the villi that line the small bowel caused by gluten inflammation. If you discontinue gluten for weeks or months before the biopsy, the villous lining heals and there' noting to see in the biopsy.

 

I ended up getting a biopsy in October and it was confirmed with "severe damage."  I just had a recent blood panel done again and my numbers are still high.  Does it just take a while to come down?

 

[trents]

If you are being consistent at avoiding gluten, your numbers should have been falling by now unless you are cross reacting to dairy.

[RMJ]

3 hours ago, Krisgideon said:

I ended up getting a biopsy in October and it was confirmed with "severe damage."  I just had a recent blood panel done again and my numbers are still high.  Does it just take a while to come down?

 

Yes, it can take a while for them to come down to normal, but they should at least be decreasing. It took me 6 years to get all of my antibody levels into the normal range. The TTG-IgA was really stubborn. Have your levels come down at all? Were the tests run by the same lab? Results from different labs can’t be compared easily.

[Krisgideon]

Is there anyway to include a picture?  I have the results side by side

[trents]

59 minutes ago, Krisgideon said:

Is there anyway to include a picture?  I have the results side by side

You only have a short time to append pictures before the edit feature times out when you create a post. Look for the three dots in the upper right corner of a new post window.