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

Non-Celiac Gluten Sensitivity

ML123

Recommended Posts

ML123 Newbie
ML123
Posted

Hello,

Testing indicated I do not have celiac disease. However, after performing another "gluten" test on my own (after maintaining a gluten-free diet for awhile), I received my answer. Waiting on blood work to verify. Does anyone have experience with NCGS? Any helpful insights?

Thank you! 

 

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

Celiac.com Sponsor (A8-M):


Gluten-free-01 Enthusiast
Gluten-free-01
Posted

Hi ML123, could you give us more details? 

2 hours ago, ML123 said:

Testing indicated I do not have celiac disease.

Did they run a complete celiac blood panel? Endoscopy/biopsy?

(Blood tests = Gliadin IgG, Gliadin IgA, Endomysium IgG, Endomysium IgA, Tissue transglutaminase IgG, Tissue transglutaminase IgA, Total IgA)

2 hours ago, ML123 said:

another "gluten" test on my own

What do you mean, please?

2 hours ago, ML123 said:

Waiting on blood work to verify.

NCGS can't be verified by bloodwork..

This is a great forum (helped me a lot) and the members have amazing knowledge, but I think more info is needed :)

Thanks  

ML123 Newbie
ML123
Posted
  • Author

Hello,

Thank you for your reply! Yes, all of those things were checked in bloodworm for celiac. The Dr. said it wasn't worth further investigation (i.e., scope, biopsy). All that appeared was a positive marker for "Q8" - but Dr. said this indicated only a 1-4% chance of developing celiac disease over the course of lifetime.

I got food allergy testing done with an MRT/LEAP test kit. Not sure the accuracy.

For my own gluten test, I had a small bite of bread. Reaction hit within 4 hours. GI distress and brain fog for 4 days.

Thank you for any insight.

 

ravenwoodglass Mentor
ravenwoodglass
Posted

Were you eating a regular gluten full diet before your blood work was done? If not them you will have a false negative. Some doctors will consider a low positive to be negative or want all the tests to be positive.  You may want to get copies of the tests and post the results and the lab ranges and post them here. Many are familiar with the tests and can give you some insight. There are cases where folks have been negative with blood work but positive on the biopsy so it would be a good idea to have the biopsy done to be sure.

Blood tests for food allergies are not the same as celiac tests. They also have high rates of false positives. 

If you want further testing for celiac you have to go back to eating gluten for 3 months and then retest.  If you become too ill to continue the challenge then you have your answer but not a formal diagnosis.

Feeneyja Collaborator
Feeneyja
Posted

I hhad been gluten free for several years for my daughter (who also is NCGS). It turns out that I am also gluten intolerant. I went on a gluten challenge for testing. Only lasted 1 month (supposed to be 3 months long).  I did not test positive so am technically also NCGS. I haven't pursued genetic testing for either of us yet.  

But I can tell you that NCGS is no laughing matter. I do not buy that it is "only a sensitivity" and doesn't cause damage. It affected my nervous system, it felt like my teeth were going to fall out, I could barely stand up and function. The reality is that celiac testing is really good at picking up those with the intestinal damage. It is not good at diagnosing those who have already gone gluten free. It is not good at diagnosing those with neurological symptoms. 

There is no good definition of NCGS and no way to test for it.  Strict gluten free is the only treatment. The same as celiac disease. 

Gluten-free-01 Enthusiast
Gluten-free-01
Posted
1 hour ago, ML123 said:

Thank you for your reply!

You're welcome :)

1 hour ago, Feeneyja said:

But I can tell you that NCGS is no laughing matter. I do not buy that it is "only a sensitivity" and doesn't cause damage.

I totally agree.

4 hours ago, ML123 said:

Does anyone have experience with NCGS? Any helpful insights?

Yes, I have NCGS. My blood tests were negative and I didn’t pursue an endoscopy/biopsy. It was my personal choice – the main reason was that I don’t trust doctors in my country enough to let them perform it. There are risks involved – e.g. small intestine perforation. They ask you to sign an informed consent before the procedure, so even if something happens, it’s never their fault, of course (!).  

So, yes, I may be an undiagnosed celiac, in fact.

I’ve decided not to worry about not having a formal diagnosis. I stick to the gluten-free diet, don’t cheat and like cooking so I actually enjoy the food I eat and don’t feel deprived really.

As Feeneyja said, it is not uncommon to have neurological symptoms as a NCGS. In my case these were migraine headaches, diziness, vertigo, brain fog, fatigue, tingling in my left arm, anxiety and irritability.

Going off gluten has helped a lot! :) 

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.