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Silent Ncgi, Is It Possible?

Salax

By Salax
in Coping with Celiac Disease

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Salax Contributor
Salax
Posted

For anyone out there, who has experienced this…I have a random question that I have searched for and can’t seem to find the answer too.

I know with Celiac disease there are folks that are silent Celiac’s.

 

Are there silent non-celiac gluten intolerant/sensitive folks? There is a reason I am asking.

 

In theory, let’s say someone has traditional celiac symptoms, and is diagnosed celiac via blood, but not villi (no villi damage) and the blood is only IGG higher none others, so….they go gluten free, but their symptoms continue even after years of gluten free, they remove other intolerant foods (corn and dairy) and then dying gall bladder and then finally they feel great.

 

Then, out of curiosity, they do the celiac gene test, and they don’t have either gene, but the doc interpreting the results says they have both genes for NCGI/NCGS. But then the person accidentally eats gluten and nothing happens, no symptoms nada…..they feel great.

 

How does that happen?  What does it mean? Has anyone had a similar experience? Theories, ideas?

 

Thanks guys, just need to bounce this off ya'll.

 

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WestCoastGirl Apprentice
WestCoastGirl
Posted

I don't personally have this experience, but since there can be silent celiac, I can't see why there couldn't be silent NCGI.

bartfull Rising Star
bartfull
Posted

IS there a gene for NCGI?

 

I don't think they know very much about NCGI yet. From what I understand the symptoms are the same as for celiac, but there is supposedly no villi damage. According to that "definition", the only "symptom" is symptoms, so if you DON'T have symptoms, you don't have it.

 

All that being said, I PERSONALLY suspect there is a lot more going on with NCGI than doctors and scientists realize. I have a feeling they will eventually come to the conclusion that it does do damage, perhaps to the villi, perhaps to other parts of our bodies. It might even BE a form of celiac. But that's just me speculating.

 

So I don't have an answer for your question, but maybe someday they'll figure it out.

Salax Contributor
Salax
Posted
  • Author

IS there a gene for NCGI?

 

I don't think they know very much about NCGI yet. From what I understand the symptoms are the same as for celiac, but there is supposedly no villi damage. According to that "definition", the only "symptom" is symptoms, so if you DON'T have symptoms, you don't have it.

 

All that being said, I PERSONALLY suspect there is a lot more going on with NCGI than doctors and scientists realize. I have a feeling they will eventually come to the conclusion that it does do damage, perhaps to the villi, perhaps to other parts of our bodies. It might even BE a form of celiac. But that's just me speculating.

 

So I don't have an answer for your question, but maybe someday they'll figure it out.

 

I didn't know there was a gene either but this guy is saying there is.

 

Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

TEST INTERPRETATION(S):

Interpretation of HLA-DQ Testing: Although you do not possess the HLA-DQB1 genes predisposing to

celiac disease (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene

that predisposes to non-celiac gluten sensitivity, in your case HLA-DQB1*0301 and HLA-DQB1*0602.

Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if

you have them) will possess at least one copy of the gene. Two copies also means there is an even

stronger predisposition to gluten sensitivity than having one gene, and the resultant immunologic gluten

sensitivity may be more severe. This test was developed and its performance characteristics determined

by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food

and Drug Administration.

Adalaide Mentor
Adalaide
Posted

My memory isn't what it used to be, but when I last heard Dr. Fasano talk about genetic tests and celiac and NCGI he did not mention any such genes. If anyone would know about them, he would right? 

 

I'm sure this may be an unpopular opinion around here but maybe the problem was the gallbladder the whole time? Maybe wheat and/or gluten aren't and never were an issue. Just a possibility. 

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