Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

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

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

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

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

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
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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,916
    • Most Online (within 30 mins)
      7,748

    TrevorT
    Newest Member
    TrevorT
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
    • Jack Common
      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
    • Jack Common
      My old results (almost a year ago) are: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months and after I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   I didn't have any symptoms now except tiredness but I think it's just work. I'm not IgA deficient as you can see so I don't need to do this Deamidated gliadin peptide IgG test. But I do because it's sometimes not in the normal range. What do you think this time? I think I don't have celiac disease. But this test... 
    • Wheatwacked
      @plumbago, I found a good PDF on cholesterol:  Unlocking the mysteries of VLDL: exploring its production, intracellular trafficking, and metabolism as therapeutic targets I just started it, but it may have answers for us, with whacky cholesterol.  The pharmaceuticals don't seem to be interested in anything but statins.   "The nicotine in tobacco causes a decrease in the HDL cholesterol level. " Maybe you should start smoking? 🤪 I have high LDL and low HDL.  It is genetic mutations in the LDLR, APOB, PCSK9, or LDLRAP1 genes. My whole family is on statins for Familial Hyperliperdemia except me.  December I had ultrasound and cat scan for Carotid Artery blockage and both sides are above 85% blockage.  I started on Atorvastatin and that made me weaker than ever, even with CoQ10.  I asked for and got prescription for 2000 mg/day Nicotinic Acid B3 and in the 3 weeks my numbers changed. I am feeling realy good lately.  Stronger and more flexible.  Sleeping better.  Getting roto router (TCar) as soon as I get clearance from a cardiologist.  I expect that by my next blood panels in April to be even better. I am beginning to believe that like vitamin D where the RDA only accounts for preventing Rickets, the RDA for B3 is way underestimated.   From Oct 22 to Jan 17: A1c from 13.5 to 10.2 eGFR from 55 to 79 Triglyeride from 458 to 362 Total cholesterol from 245 to 264 HDL from 27 to 44 VLDL from 84 to 68 LDL from 134 to 154
    • plumbago
      I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it. All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and speculate now: The lab ranges we all see on our reports are more or less the averages of Americans who have had those blood tests. Now, it’s up to you and me whether or not to think of the average American as healthy. I can make arguments both ways, more often than not, on the negative. My point here is that maybe the current range of HDL is somewhat skewed (ie, low), and maybe just maybe my super high (plus 100s) HDL results are not something to worry about; the range just needs updating. Why do I say this? Because pre-celiac disease diagnosis, my HDL values were in the normal range, but post celiac disease diagnosis, my HDL levels are way above average. See where I’m going? My trusty guidebook on celiac disease, Recognizing Celiac Disease by Cleo Libonati, RN, BSN, says that HDL increases after being on the gluten free diet. Or can increase, I guess. Then again, it could be something else. ¯\_(ツ)_/¯ In thinking of going to a cardiologist, I sort of fear that he/she will be dismissive of a link to celiac disease, treated celiac disease, and would not therefore be considering all possibilities. @trents I'm sorry you've been diligently working on your numbers to no effect. That must be frustrating. LDL is a world that is far better understood than HDL, so for you there's maybe less "mystery." Familial hypercholesterolemia is for sure something that can be tested. Outside of that, you're right, genetics can determine a general pattern.
×
×
  • Create New...