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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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      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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