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How Strict If You Are Ncgi?

raistlinm

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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!

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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.....

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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?

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      Seeking advice on potential gluten challenge

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    • JudyLou
      Seeking advice on potential gluten challenge

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      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
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