Jump to content

  • 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

How Strict If You Are Ncgi?

raistlinm

Recommended Posts

raistlinm Newbie
raistlinm
Posted

I have a question... Is Non Celiac Gluten Intolerance the same as Celiac? I know transgressions are very bad for Celiacs, is the same case for Non Gluten Celiac Intolerence? I understand the the sympthoms are similar but not the immune response, if you have NCGI and you don't follow a strict Gluten Free diet, will you have the symthoms only or you are risking as well getting other important sickeness? Thanks!

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

Celiac.com Sponsor (A8-M):


srall Contributor
srall
Posted

Absolutely 100% gluten free.  No question.  

Personally I think I do have celiac based on the fact that I had a very specific rash from eating gluten, but by the time I got myself to the doctor I had been off gluten for 2 months and even though the doctor was pretty sure it was celiac I wasn't willing to do a gluten challenge.

 

That said, after 3 years of eating gluten free and constantly reading about it, I believe that there is gluten intolerance that doesn't present as celiac disease.  And it's very serious.  I believe some people with gluten intolerance develop celiac disease, some get arthritis, some get chronic fatigue, etc etc.   I'm glad NCGI is finally starting to get some attention because I worry that a lot of people who need to be gluten free test negative for celiac and then go on with their lives as if gluten isn't the problem  ( My younger brother for example)

GottaSki Mentor
GottaSki
Posted

I agree.  As gluten free as humanly possible in the world we live in.

 

My NCGI children and grands can't tolerate any gluten -- exactly same reaction as their diagnosed Mom (me) and their sister.

 

I believe if I had been tested earlier in life I would also be labeled NCGI as my antibodies were all mild/weak positive at 43 with symptoms dating back to childhood.

 

So I'd say NCGI needs to be just as careful as someone with celiac disease.

pricklypear1971 Community Regular
pricklypear1971
Posted

The truth is the medical community does not know what being "NCGI" means - other than you are gluten sensitive, and you fail the Celiac tests.

To tge best if my knowledge, there are no long term studies of the health problems found in NCGI patients. There are no studies showing what "a little bit of gluten" does. There are no studies about what happens to NCGI if you continue to eat gluten.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

For me, the key is the improvement in so many symptoms being completely gluten-free. I have ended up virtually paleo.

I was more or less wheat free for 9 years, but the change from that to gluten-free is almost unbelievable.

There is not much long term evidence about effects of untreated ncgi.

For me, there is no going back to the pain and exhaustion of life pre gluten-free.

Evidence is starting to emerge that ncgi and celiac are on a spectrum. Early days though

GFinDC Veteran
GFinDC
Posted

They think there is an auto-immune response in NCGI, just not the same AI response as in celiac.  Any AI response (bodie's immune system attacking it's own tissues) is not good for a person.   Long term effects have not been studied yet so nobody can tell you what NCGI might result in later.  But there is some thinking that Crohn's disease may involve the innate immune response also.  So it could be very serious.

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

 

Sassbo Newbie
Sassbo
Posted

I am NCGI as well (just found out this year) and tested negative, but had already eliminated gluten.  I do have reactions when unintentionally getting "glutened".  So far had found by trial and error that I am ok with products labeled "produced in the same facility as wheat".  This is definately a learning process.....

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Welcome Sassbo :)

 

If you haven't already -- take a stroll through the "Newbie 101" thread -- it contains tons of helpful tips.

raistlinm Newbie
raistlinm
Posted
  • Author

I did igA, igG and igE, all very low.

 

I got a biopsy negative as well.

 

I have helicobacter, it is quite bad, huge erosion with ulcers and metaplasia.

 

Also de ultrasound scan showed a inflammation in the ileum but nothing in the colonoscopy (but I have pain in the right lower side from time to time).

 

Bit low in Vit D, bit low in copper, TSH 3.2, liver bit high... No clue! Celiac? NCGS? Chron? Just the Helicobacter?

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,677
    • Most Online (within 30 mins)
      7,748
    Nancy Magil
    Newest Member
    Nancy Magil
    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

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.