GI diagnosed without biopsy

[Melissa93]

Hey!

I'm new here and wanted to share my experience with celiac. Since I was about 4 years old I've been complaining daily about abdominal pain (according to my parents), over the years (I'm now 27 y/o) I have completely gotten used to my daily pains even though they have taken a lot of freedoms away in my life. I got tested for celiac at age 5-6 for the first time, after getting a high positive bloodtest back, the biopsy was negative. So they told my parents it wasn't celiac. When I was 19 years old I was tested again, again positive antibodies in my blood but even though I had mild inflammation in my intestines they said my biopsy was negative. IBS it was and I just always felt like I had to accept that I was always going to be in pain. In the meantime I was also diagnosed with Hashimoto's disease (thyroid auto-immune) and endometrioses. Multiple family members (maternal side) of mine have celiac disease also!

Anyway fast forward to last month when I was at the GI because after getting a very severe case of Covid-19, I have been struggling with a damaged nerve system and TERRIBLE GERD. Part from getting a barrium swallow test to check how far my reflux goes (results: to the base of the throat, can't go any further), I got my upper abdomen checked as I was having severe stomach pains (was all good) and my blood checked. He wanted to do a celiac panel as well, which I expected with my history and my symptoms. 

Results:

ENDOMYSIAL ANTIBODY IGA: Positive

T-TRANSGLUTAMINASE (TTG) IGA: 9 U/ML Weak positive

IMMUNOGLOBULIN A, QN, SERUM: 79 mg/DL

T-TRANSGLUTAMINASE (TTG) IGG: 4 U/ML (negative)

CELIAC GENETICS: DQ Genotype: DQ2.5 (HLA DQA1*05:DQB1*0201) which means high risk of celiac.

 

So my IG told me that because I am too low in Immunoglobulin my TTG-IGA is probably a lot higher than actually is tested. That makes sense, as I don't have a lot of IGA so when you test for a specific antibody in IGA it will turn out lower if you just don't have much. Even though it is low, my EMA did test positive, also tested in IGA. However he said that he didn't want to do a endoscopy as I've had multiple while I'm still young and as my stomach/GERD situation is quite severe and he doesn't want to further upset my body. 

This is confusing to me, as basically I've tested positive my entire life but they always made the biopsy sound like thé most important thing. My GI said that that's outdated information, as people can have celiac disease without a positive biopsy if they have symptoms and antibodies. He has now officially diagnosed me with celiac as with my blood levels he didn't need the official biopsy he said. 

 

What is your experiene with this? Anyone else with too low immunoglobulin levels? I have now changed my diet and gone gluten free since 1.5 weeks and I already notice a difference (since two years my belly is always bloated, even in the morning and always painful to the touch. It now seems a lot less bloated and painful in the morning already). I have accepted that I have celiac, but it's hard to have hope again that my pain might ever go away AND that it could have been earlier in my life if doctors just didn't make the biopsy so important..

[trents]

If eating gluten-free makes you feel better then I think you have your answer. Celiac Disease never goes away once it becomes expressed or active. It's in the genes like blue or brown eyes.

[Melissa93]

Yes, I know. I was more wondering if there are more people with low immunoglobulin levels and what their test results were, or people that also didn't get a biopsy but did get an official diagnosis.

[Posterboy]

2 hours ago, Melissa93 said:

Yes, I know. I was more wondering if there are more people with low immunoglobulin levels and what their test results were, or people that also didn't get a biopsy but did get an official diagnosis.

Melissa93,

I got an "Official" diagnosis but didn't have a biopsy.

I was lucky that I was not my doctor's first Celiac patient.

Here is an older HuffPost Article about it....

https://www.huffpost.com/entry/gluten-what-you-dont-know_b_379089

The European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) already says Biopsy's are not needed to diagnosis children as part of their new updated guidelines.

https://www.news-medical.net/news/20200207/New-guidelines-recommend-no-biopsy-approach-for-childhood-celiac-disease-diagnosis.aspx

The Pill Cam has recently been shown to be a non-invasive clinical practice that is more effective than Endoscopy.  Maybe you can get your doctor's to try a Pill Cam on you and see what it shows.

See this new research entitled "New Evidence Supports Using Capsule Endoscopy for Complicated Celiac Disease: 40% of lesions were found distal to the ligament of Treitz and would have likely been missed by standard endoscopy"

https://www.medpagetoday.com/reading-room/aga/lower-gi/89840

Just because your Endoscopy didn't catch it on biopsy didn't mean you didn't have damage...

I was glad my doctor knew enough to diagnose me from my antibodies alone!

And it sounds like your new doctor was too!

Villi atrophy can be patchy....and is often missed.....especially if several biopsies were not taken with your scope.

I hope this is helpful but it is not medical advise.

Posterboy,

[Melissa93]

Thank you Posterboy for all the information. I had googled around for more information about non biopsy celiac diagnosis but this is very informative and soothes my concern.

 

I remember that when I had my endoscopy and colonoscopy at 19 the doctor told me they had taken like 2 biopsies in total or something. Which I now know isn’t enough to check villi. Also very interesting that American wheat contains more gluten than traditional European wheat strains. Since living in the US (4 years) my symptoms have grown more severe, but I guess that would make sense anyway.

 

thanks for your help!

[DJFL77I]

just stop eating gluten

[GFinDC]

There was a list of 5 celiac signs that doctors sometimes used to diagnose celiac without an endoscopy.  I think it was developed mostly for young children so they wouldn't have to go through the endoscopy.  May have been something a GI group developed some years ago.