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How Strict If You Are Ncgi?


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8 replies to this topic

#1 raistlinm

 
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Posted 05 May 2013 - 08:29 PM

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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#2 srall

 
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Posted 06 May 2013 - 06:19 AM

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)


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#3 GottaSki

 
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Posted 06 May 2013 - 07:00 AM

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.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 pricklypear1971

 
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Posted 06 May 2013 - 08:37 AM

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.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#5 Celiac Mindwarp

 
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Posted 08 May 2013 - 07:14 AM

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
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#6 GFinDC

 
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Posted 08 May 2013 - 08:11 AM

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.co...ists/Page1.html

Innate immune response in AI diseases
http://www.celiac.co...uals/Page1.html

 


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#7 Sassbo

 
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Posted 08 May 2013 - 09:30 AM

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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#8 GottaSki

 
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Posted 08 May 2013 - 12:32 PM

Welcome Sassbo :)

 

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


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#9 raistlinm

 
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Posted 09 May 2013 - 04:49 AM

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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