NCGS - should I gluten challenge/EGD?

[OHtummytroubles]

Hello,

I took a break from this board for nearly 10 years as I had a scope done years ago that showed I wasn’t Celiac. Fast forward 10 years, and my troubles continue. Since that time, I’ve had further testing, a gallbladder removal, colonoscopy and an exploratory lap to discover the source of continued stomach pain/bloating/distress. All have turned up clear, aside from the Gallbladder removal which also did not relieve symptoms. In early May, my father told me he tested recently and had the Celiac genes. I mentioned this to my Gastro, and she sent my bloodwork for testing as well. I am DQ 2.5 from what I understand. DQ alpha 1 2:01,2:01, and DQ beta 1 05:05. Gastro told me that doesn’t mean I have Celiac, but that I have the genes for it to develop. Said I could gluten challenge and to another EGD. My concern is that I’ve been gluten free since 5/12/22 and feel better. Not 100 percent, but better. I’m also not convinced that they would take more than one biopsy from the Duodenum.  I have had 2 scopes over maybe 15 years and each time they only took one biopsy from the Duodenum, and other samples from other areas due to checking for Barrett’s or HPylori. My understanding is you’d want them to take at least 4 samples from the Duodenum due to the patchiness of celiac vili bluntening, but maybe I’m incorrect. The doc said we could forego the scope and call it NCGS, but that I need to be strict with my gluten avoidance at this point and have my kiddos tested periodically since they are also at risk due to my father and I’s genetic testing. 
 

My question is, would you agree to a gluten challenge and scope if you weren’t confident the Dr would take enough samples for an accurate diagnosis? I just had my exploratory lap 5/12/22, so didn’t want to push another procedure so soon after:( Should I be content that it’s NCGS and I finally have some sort of answer?

Thanks for reading this far!

[knitty kitty]

Welcome back to the forum!  

Sorry to hear you're having diagnosis problems.  Many of us have endured years of symptoms in a struggle to get a diagnosis.  

Since you've only been off of gluten for a month or so, doing a gluten challenge for eight weeks and another endoscopy may be the best way for you to get that diagnosis.  

Anemia can affect not only red blood cell production, but also white blood cells, including antibodies, which could explain your "normal" celiac panel tests.  

Could you please post the results of your blood tests?  Along with the reference ranges?  Some people have total IgA deficiency which would affect the Ttg IgA test for Celiac antibodies.  This can be missed if a doctor runs only the Ttg IgA test.  

Your doctor is missing the subtle signs of Celiac Disease like having the genes for Celiac, anemia, low Vitamin D, gallbladder problems, continuing symptoms that are alleviated on a gluten free diet.  

A diagnosis of Non Celiac Gluten Sensitivity should be made after Celiac Disease is ruled out.  

And, yes, more than one or two biopsy samples should be taken.  If your doctor doesn't agree, find another.    

Hope this helps! 

[Awol cast iron stomach]

Just now, Awol cast iron stomach said:

 

Is the Dr willing to put NCGS in the medical chart based on all the medical history and past tests? Are you willing, and able to be strict with just that label? Will your Dr's and medical providers honor that label? Will they help maintain your health and support it?

It does sound like in my opinion you know that you should avoid gluten. If you are committed enough to accept this and live the life of a Celiac . I can share I am labeled NCGS. In my experience I am labeled NCGS, but live like a Celiac. I could not finish my gluten challenge. I was to do 2 weeks I barely made it 6 days. So NCGS it is for me.  My cousin is diagnosed Celiac.

My reaction during the challenge was stronger and the impact longer lasting. I resigned from a job during that time as I was physically unable to get to work. I will not go into the details, but the symptoms fall out I could not make the drive to work on various levels. I did not even feel remotely normal for 2 years, and 4 months. I also had many symptoms, and developed additional intolerance during that time. 

I do not want to convince you not to do it, but just want to ensure if you already know, give you the reality of what it entails. IF someone didn't have celiac in their genes or family, I may say consider the challenge. Your situation has a strong indication that gluten or a subset of gluten is a problem for you.  

Best wishes

[Scott Adams]

Wow, welcome back and I'm sorry to hear that you're not doing well. 

You are correct to question your doctor regarding the number of samples they plan to take during a endoscopy for celiac disease, and you are correct that the recommended amount is at least 4 samples. We had someone post here recently that they spoke to their gastroenterologist (in the UK I believe) and asked them beforehand if they would be taking at least 4 samples, got a semi-positive response, but then the doctor took only 2 samples, so you just don't know who you are dealing with, as it seems some doctors don't appreciate patients who go the extra mile and may actually know more then they do.

I agree with @Awol cast iron stomach that you have already discovered that 1) you have the genetics to get celiac disease; and 2) you know that going gluten-free provides you some level of symptom relief. This means at the very least you are likely in the non-celiac gluten sensitivity area, and there isn't a test for that yet.

Does it make sense for you to eat 2 slices of wheat bread daily for 6-8 weeks before a celiac blood panel, then at least 2 weeks before an endoscopy if you need to be gluten-free anyway due to your NCGS? What if the tests show that you don't have celiac disease, or are borderline or inconclusive? Would you still go gluten-free? To me it seems like your answer might be "probably," but that would be for you to decide.