Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Silent Ncgi, Is It Possible?


Salax

Recommended Posts

Salax Contributor

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.

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



WestCoastGirl Apprentice

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

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

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

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. 

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.