Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

NCGS - should I gluten challenge/EGD?

OHtummytroubles
 Share

Recommended Posts

OHtummytroubles Rookie
OHtummytroubles
Posted

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted

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 Experienced
Awol cast iron stomach
Posted
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 Grand Master
Scott Adams
Posted

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. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,367
    • Most Online (within 30 mins)
      7,748
    Brianman
    Newest Member
    Brianman
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...