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

Very Confused


Noomers

Recommended Posts

Noomers Rookie

I was diagnosed with celiac just two weeks ago. I had very few symptoms. I had my 2.5yo son tested since he has all the symptoms (diarrhea, low BMI, irritability, chronic loose stools (sometimes grey ones). His test results came back today and they are very much negative. So now what? Is he too young to get an accurate test?

What confuses me more is that since the whole family started a gluten-free diet 4 days ago, his moodiness has improved somewhat and he had a semi-normal bowel movement. I'm truly shocked that he didn't test positive and I did.


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



Celiac.com Sponsor (A8-M):



psawyer Proficient

Testing is notoriously unreliable in young children. False negatives abound.

Roda Rising Star

I agree with Peter. If you want to take it further you could consult with a gi and get the EGD and biopsy. You can have negative blood work and positive biopsy, but biopsy can produce false negatives too. Or if you are comfortable with putting her gluten free without a dr. diagnosis then go for it. I don't have a doctor diagnosis for my 6 year old son, but I do have a signed letter from his allergist to avoid wheat, rye, barley and all gluten containing ingredients that I sent to the school and that was sufficient for the school. But I know a lot of people say getting a diagnosis makes it easier when they are in school.

Noomers Rookie

Thanks for the replies.

I am wondering if it's best to get a biopsy (which would have to be ASAP) or just self-diagnose. I am switching the whole house to gluten-free because of me which will make further testing later on in life next to impossible, right?

I'm waiting for a call from our doctor.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,100
    • Most Online (within 30 mins)
      7,748

    Jules13
    Newest Member
    Jules13
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @BlakeAlex! Is this the GI Reset product you are using?: https://inwellbio.com/wp-content/uploads/2023/08/GI-Reset_Info-Sheet.pdf There is a lot of weird stuff in that you could be reacting to. Personally, I would discontinue it as I doubt it's really doing you any good anyway. Getting to the point where you are truly eating gluten free consistently usually involves a significant learning curve as gluten is hidden in the food supply in many ways by manufacturers. For instance, would you ever expect to find it in soy sauce or Campbell's tomato soup? But it's there and a main ingredient. Getting rid of macro sources of gluten is relatively easy. Just cut out bread, cake and pasta. But avoiding the hidden sources and the cross contamination sources is much harder. I am including this article that might be of help to you as a new celiac in getting off to a good start:    Long-term undiagnosed celiac disease inevitable leads to nutritional deficiencies because of the damage done to the lining of the small bowel where almost all of the nutrition in our food normally is absorbed. We routinely recommend that newly diagnosed celiacs invest in some quality gluten-free vitamin and mineral supplements. And I'm talking about more than a multivitamin. We recommend a high potency B-complex, 5-10,000 IU of D3 daily, Magnesium glycinate, and zinc. I suspect your mouth and throat ulcers are nutritional deficiency related. Costco is a good place to get good quality gluten-free vitamin and mineral supplement products at a reasonable price. Are you on medications? May we ask your relative age?  
    • BlakeAlex
      Hello, I was recently diagnose with Celiac Disease and without realizing, I had every symptom on the list. Now I am moving as fast as I can to a total recovery. I thought I was doing well but I notice my ulcers on my tongue and throat and cough are starting to come back again.  Has anyone experience these symptoms? Also, I am incorporating GI Reset powder for a jump start to recovery.  Thanks in advance, Blake     
    • trents
      No. There is no damage done to the gut lining with NCGS.
    • MagsM
      Hi Trents, Thanks for the feedback. Yes, I do have concerns about NCGS. Would this show up if I did the endoscopy testing?
    • trents
      @MagsM, It concerns me that your physicians seem to be preoccupied with the concept of "classic celiac disease".  That suggests to me their knowledge of celiac disease may be dated and they don't have a concept yet for the "silent celiac" who doesn't manifest with classic GI symptoms.
×
×
  • Create New...