Mayo Testing Updates

[Tall Holly]

Just thought I would share my findings from Mayo in case others are going through the same thing. Brief recap as well  

1. 2018 endoscopy showed increased IEL’s but celiac blood work negative and villi were fine. Wasn’t told about it. 
 

2. Repeat endoscopy May 2 of this year because of ongoing and worsening stomach issues since January (after a bad bout of GI Covid). Increased IEL’s present again and celiac b/w negative. Diagnosed with NCGS based on both endoscopy findings. 
 

3. went to Mayo for a second opinion. They confirmed the NCGS based on my last two endoscopies but decided to do their own as well. So here we are. 
 

I had the endoscopy on Wednesday after being gluten-free for just over a month. They wanted me to be gluten-free for this one and see what happened. All of the inflammation and IEL’s are now gone. This confirms everyone’s initial diagnosis of NCGS. I also have a post-covid IBS that has been terrible but gluten really kicks it into overdrive. 
 

I tried to have gluten yesterday since I was all healed, just to see what happens, and I am paying for it dearly! 
 

So if you are having gluten-related issues, but negative for celiac, please know that you can have a serious/severe ncgs that causes terrible inflammation. I admit that I thought gluten intolerances were a fad before I was diagnosed. I’m glad I’m no longer naive and uninformed. 

[Russ H]

Thanks for the update. It is very helpful to others experiencing similar symptoms. No more gluten challenges and get on the mend!

[Scott Adams]

Good to hear that you found an answer to your issues!

[knitty kitty]

@Tall Holly,

Since Celiac Disease damages the small intestine more severely over time, I'm of the opinion that many people who are diagnosed with NCGS just haven't sustained the major damage (Marsh Three) of Celiac Disease, yet.

I thought these articles might be of interest to you.  

Carrier frequency of HLA-DQB1*02 allele in patients affected with celiac disease: A systematic review assessing the potential rationale of a targeted allelic genotyping as a first-line screening

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7109277/

"...importantly, a comparable risk of celiac disease development was present in individuals carrying a double dose of HLA-DQB1*02 alleles, no matter the paired HLA-DQA1 alleles."

And...

"The present systematic review estimated that only 5% of the general celiac disease population (including both adults and children) is devoid of HLA-DQB1*02 allele at all. If we could consider a mass screening looking for the carrier status of HLA-DQB1*02 only, we may identify 95% of celiac disease predisposed patients and, concomitantly, rule out (with no more than a 5% error) the lifetime risk of disease in 60%-70% of the general population:."

And another article...

Classical celiac disease is more frequent with a double dose of HLA-DQB1*02: A systematic review with meta-analysis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6375622/

"Conclusion:  Our results suggest a significant gene dose effect regarding clinical presentation: classical clinical presentation and villous atrophy are more frequent in patients with a double dose of HLA-DQB1."

Best wishes!