Biopsy

[Ginger38]

I am one of those who fell through the cracks- didn’t get the biopsy done before going off gluten, because even though I had positive TTG-IGA antibodies I was told I could not have celiac disease but to go gluten free. Of course my newly established gastroenterologist has tried to convince me numerous times to go back on gluten and get the biopsy, but I can’t even imagine how sick I would be or how I would maintain my job. I have all kinds of weird symptoms on top of all the GI symptoms with gluten consumption. Every time I see him (saw him this morning) I feel like I doing something horribly wrong not having the biopsy even though he’s told me the biopsy wouldn’t be a 💯 guarantee and of course treatment is the same either way. I don’t understand why this biopsy is so important especially when it’s not even a guarantee? he’s sure I have celiac but he just can’t put it on paper or whatever bc I haven’t had the biopsy… but if the biopsy is negative he still can’t put it on paper.. I just get tired of feeling like I’m doing something wrong by not going back on gluten and having this biopsy .. and I don’t know why it bothers me so much 

[Scott Adams]

Would you remain on a gluten-free diet no matter the outcome of the endoscopy? If the answer is yes, then why bother doing it?

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[RMJ]

Due to an unrelated issue I couldn’t have a biopsy when my celiac antibodies were found to be elevated.  My official diagnosis was thus “abnormal celiac antibody panel.”  Maybe your doctor could put something like that on paper? Better than nothing. You are NOT doing something horribly wrong by skipping the biopsy!!!

Four years of gluten free diet later one of my antibodies was still stubbornly elevated and I finally was able to have an endoscopy. I did not do a gluten challenge since the antibody level said I still had problems.  Damage was found and I got the official celiac diagnosis.

[Hawk4]

I managed to avoid a biopsy, despite my HMO’s recognition that the biopsy is the gold standard. Depending how long you’ve been gluten-free, there may be another option.

My TTG – IGA, tested by my PCP, was off the charts (more than what they measure, so at least 17 times normal).  I was not gonna keep eating gluten while waiting for an appointment with the G.I.. I finally got the appointment with the G.I. four weeks after diagnosis, and 4 weeks after I stopped eating gluten.  When I declined biopsy, the G.I. ordered an endomysial iga titer; results were 30 times normal (despite being off of gluten for over over a month).  I had also private paid for a gene test (not a diagnostic tool) and confirmed I had HLA-DQ2.  Based on the TTGIGA being >10x normal, the results of the endomysial IGA, the positive impact of going off gluten, and my gene test, the gastroenterologist made the celiac diagnosis. We agreed that if my numbers (ttG-iga) don’t improve in 6 months, I’ll have a biopsy later.

So far, the biggest downside of not having had a biopsy is that I am probably not eligible for the various trials for celiac that are out there.

Anyway, just another perspective on biopsies.  I am not a medical professional of course – – just a relatively recently diagnosed celiac.

[Ginger38]

On 2/19/2024 at 2:53 PM, Scott Adams said:

Would you remain on a gluten-free diet no matter the outcome of the endoscopy? If the answer is yes, then why bother doing it?

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

Thank you for this good information. The question you posed is an interesting one. My brain works in weird ways, and I am honestly concerned that if I did not get a positive biopsy, my brain would latch on to that, even while knowing that my GI believes I have it, and I am honestly concerned that I would go back to eating gluten and somehow justify it, regardless of the fact that I know I cannot eat gluten, because of how sick it makes me. I have weird neurological symptoms, cardiac symptoms such as palpitations and high heart rate, increase in anxiety and depression, bloating, diarrhea, nausea, GERD, fatigue, horrible painful itchy raised pustular rashes, all kinds of fun things.

I have noticed lots of food intolerances as well, like salad and veggies and beans etc, makes it very hard to eat as a diabetic 

 

[Ginger38]

On 2/19/2024 at 3:56 PM, RMJ said:

Due to an unrelated issue I couldn’t have a biopsy when my celiac antibodies were found to be elevated.  My official diagnosis was thus “abnormal celiac antibody panel.”  Maybe your doctor could put something like that on paper? Better than nothing. You are NOT doing something horribly wrong by skipping the biopsy!!!

Four years of gluten free diet later one of my antibodies was still stubbornly elevated and I finally was able to have an endoscopy. I did not do a gluten challenge since the antibody level said I still had problems.  Damage was found and I got the official celiac diagnosis.

Thank you for sharing. And thank you for the encouragement that I am not making some horrible decision by not having the biopsy. I think he has my diagnosis as gluten sensitive enteropathy and elevated celiac markers or something like that.

do you mind me asking how elevated yours was on a gluten free diet that allowed you to achieve a positive biopsy?

 

[Ginger38]

2 hours ago, Hawk4 said:

I managed to avoid a biopsy, despite my HMO’s recognition that the biopsy is the gold standard. Depending how long you’ve been gluten-free, there may be another option.

My TTG – IGA, tested by my PCP, was off the charts (more than what they measure, so at least 17 times normal).  I was not gonna keep eating gluten while waiting for an appointment with the G.I.. I finally got the appointment with the G.I. four weeks after diagnosis, and 4 weeks after I stopped eating gluten.  When I declined biopsy, the G.I. ordered an endomysial iga titer; results were 30 times normal (despite being off of gluten for over over a month).  I had also private paid for a gene test (not a diagnostic tool) and confirmed I had HLA-DQ2.  Based on the TTGIGA being >10x normal, the results of the endomysial IGA, the positive impact of going off gluten, and my gene test, the gastroenterologist made the celiac diagnosis. We agreed that if my numbers (ttG-iga) don’t improve in 6 months, I’ll have a biopsy later.

So far, the biggest downside of not having had a biopsy is that I am probably not eligible for the various trials for celiac that are out there.

Anyway, just another perspective on biopsies.  I am not a medical professional of course – – just a relatively recently diagnosed celiac.

Thank you for sharing. I have been gluten free for quite a while now. My symptoms and rashes and antibodies all improved with a gluten free diet. I go back to my GI doc in six months for blood work, so I can talk to him about some of this then I guess, but my levels weren’t elevated like yours in the beginning so I doubt it will be an option for me

[RMJ]

3 hours ago, Ginger38 said:

Thank you for sharing. And thank you for the encouragement that I am not making some horrible decision by not having the biopsy. I think he has my diagnosis as gluten sensitive enteropathy and elevated celiac markers or something like that.

do you mind me asking how elevated yours was on a gluten free diet that allowed you to achieve a positive biopsy?

 

Some would say gluten sensitive enteropathy IS celiac disease! 

Gluten sensitive enteropathy

When I had my endoscopy/biopsy my TTG IgA and DGP IgG had gone down to normal.  My DGP IgA was 29 with a normal range of 0 to 19. Damage on the Marsh scale was 3A.

Some scientific studies have shown intestinal damage continues in some people even after antibody levels have normalized.

 

[Ginger38]

On 2/25/2024 at 5:29 PM, RMJ said:

Some would say gluten sensitive enteropathy IS celiac disease! 

Gluten sensitive enteropathy

When I had my endoscopy/biopsy my TTG IgA and DGP IgG had gone down to normal.  My DGP IgA was 29 with a normal range of 0 to 19. Damage on the Marsh scale was 3A.

Some scientific studies have shown intestinal damage continues in some people even after antibody levels have normalized.

 

Wow thank you!  I did not know this. Thanks for the information