Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

How Strict If You Are Ncgi?
0

9 posts in this topic

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites




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
http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

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

 

0

Share this post


Link to post
Share on other sites

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.....

0

Share this post


Link to post
Share on other sites

Welcome Sassbo :)

 

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

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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
0

  • Forum Statistics

    • Total Topics
      104,117
    • Total Posts
      919,453
  • Topics

  • Posts

    • So, I have just yesterday had blood work done to test for Celiac so I am waiting on my results.  This was prompted when my Dr discovered that I was severely anemic and after other testing sent me to  Hematology.  I actually inquired if I could possibly have a gluten sensitive because of the anemia (which has improved with an iron supplement) and feeling bloated after eating and well most of the time actually and after some research I found that this could be a sign that of a gluten sensitivity.   The Hematology Dr also recommend an upper GI.  Do you think that I am on the right course to see if I possibly have Celiac?  Can this develope later in life ( I'm 46)?  I ate a meal last night that was gluten free and did not feel like nearly as bloated after eating, would I notice a change that quickly?  Thanksort for your input.   ANN
    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,157
    • Most Online
      1,763

    Newest Member
    Anns
    Joined