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


mjroda

Recommended Posts

mjroda Newbie

My son has 4y. at 2y even the blood analises come negative for transglutaminases he had short stature, his teeth were small, got joint pain, had anemia, low vitamin A and low vitamin d,  his speech was difficult to understand. The doctors said "well he has to eat more fat and give him spinach and red meat..." I've made that but he started to feel bad with fat...

Fortunatly foud a naturopath that made fezes analises that found disbiose and other values of bowel inflamation, his liver was a bit fat and we started an anti inflammatory diet- no gluten, no laticinios- started "dr roland candida yeast ", started probiotics, l-glutamine to seal his bowel, vitamins... in a few months he started do speak more clear, was less shy, gain weight, grew more, his joiny pain desapear, his hair grew more...

but in my mind i had to have a positive blood test, so after all this... i gave him gluten for 5 months... the blood test were still negative... in does months he lost weight, his speech was less clear, it started to grow white hair (only 2 but...) :o!  his joint pain came again... well...now we've started all over again... and this time i wont go back again 😕 

i´ve read that biopsy for gluten sensitivity its not an option because it doesnt damage your bowel...so by all this simptoms i suppose my son has celiac disease... do i really need to have an ok from a gastro doctor...? need to make a biopsy in a year or so... ? just asking... does he need this...

Greetings from Portugal


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

Welcome to the forum! 

So the difficult thing about gluten sensitivity is that there are two main types: 1) celiac disease, which ~1% of the population has, and you can test for it, usually with a TTG blood test; and 2) non-celiac gluten sensitivity, which is the tricky one, because there is no current test for it, and possibly ~12% of the population has. 

To me it sounds like he has non-celiac gluten sensitivity, and you've already done the basic test for it, which is going gluten-free and seeing his symptoms improve, then going back to gluten, and seeing them come back. I would keep him gluten-free.

mjroda Newbie

thank you. yes i think is the best. hoping for good results again. thank you.

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,130
    • Most Online (within 30 mins)
      7,748

    Anna Poulin
    Newest Member
    Anna Poulin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Skg414228
      Fair enough! I very easily could have misread somewhere. Celiac is very confusing lol but I should know in a little over a month what the final verdict is. Just thought chatting with people smarter than myself would get me in the right mindset. I just thought that DGP IGA was pretty high compared to some stuff I had seen and figured someone on here would be more willing to say it is more than likely celiac instead of my doctor who is trying to be less direct. She did finally say she believes it is celiac but wanted to confirm with the biopsy. I did figure it wouldn't hurt seeing what other people said too just because not all doctors are the best. I think mine is actually pretty good from what I have seen but I don't know what I don't know lol. Sorry lot of rambling here just trying to get every thought out. Thanks again!
    • Scott Adams
      Yes, these articles may be helpful:    
    • trents
      No, you don't necessarily need multiple testing methods to confirm celiac disease. There is an increasing trend for celiac diagnoses to be made on a single very high tTG-IGA test score. This started in the UK during the COVID pandemic when there was extreme stress on the healthcare system there and it is spreading to the US. A tTG-IGA score of somewhere between 5x and 10x normal is good enough by itself for some physicians to declare celiac disease. And mind you, that is the tTG-IGA, not the DGP-IGA. The tTG-IGA is the centerpiece of celiac antibody testing, the one test most commonly ordered and the one that physicians have the most confidence in. But in the US, many physicians still insist on a biopsy, even in the event of high tTG-IGA scores. Correct, the biopsy is considered "confirmation" of the blood antibody testing. But what is the need for confirmation of a testing methodology if the testing methodology is fool proof? As for the contribution of genetic testing for celiac disease, it cannot be used to diagnose celiac disease since 40% of the general population has the genetic potential to develop celiac disease while only 1% of the general population actually develops celiac disease. But it can be used to rule out celiac disease. That is, if you don't have the genes, you don't have celiac disease but you might have NCGS (Non Celiac Gluten Sensitivity).
    • Skg414228
      Okay yeah that helps! To answer your last bit my understanding was that you need to have multiple tests to confirm celiac. Blood, biopsy, dna, and then I think symptoms is another one. Either way I think everything has to be confirmed with the biopsy because that is the gold standard for testing (Doctors words). You also answered another question I forgot to ask about which is does a high value push to a higher % on those scales. I truly appreciate your answers though and just like hearing what other people think. Digging into forums and google for similar stuff has been tough. So thank you again!
    • trents
      The tests outlined in the article I linked are rated according to "sensitivity" and "specificity". Sensitivity refers to how well the test does in not missing those who actually have the disease being tested for, in this case, celiac disease. The DGP-IGA test is estimated to have a sensitivity of 75% to 95%.  Specificity refers to how well the test does in not producing a positive score to medical conditions other than the one being tested for, in this case, celiac disease.  The DGP-IGA test is estimated to have a specificity of 90% to 100%. Obviously, in your case there is no issue with sensitivity. So, the only remaining question would be in relation to specificity. It is my observation from participating in this forum for many years and reading the posted test results from many, many forum contributors, that the likelihood of misdiagnosis due to a specificity issue diminishes greatly with high test score numbers. Still, there is a slight chance it could be due to something else. Think about it. If this were not so, why would your GI doc even be scheduling you for a biopsy?
×
×
  • Create New...