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

Trying To Eat gluten-free, Had Blood Test, Negative


nom

Recommended Posts

nom Newbie

Hi Guys,

 

I'm trying to decide what to do here, so perhaps thought I'd ask if anyone had been in a similar situation.

 

Through process of elimination, I worked out on my own that I was having a reaction (typically GI symptoms) whenever I ate products containing wheat.  I put myself on a Gluten Free diet, and inside of a week found significant changes in sleep patterns, energy and a complete absence of athsma symptoms I had suffered from for years.  After a particularly bad couple of weeks of what I thought was gluten cross contamination (I eat out a lot), I decided to get a blood test done, just to see if anything showed up.  I just got the results today, and it came back as a "1", which is within normal.

 

Now, given I had been trying to eat gluten-free for ~ 2 months prior, this could be a meaningless number.  On the one-hand, a non-zero number makes me think it's a positive although week.  On the other hand, I thought it'd be much higher since, based on my symptoms, I'd had a pretty bad couple of weeks.

 

As my doctor said, getting some numbers on a piece of paper, or a biopsy isn't going to tell me anything I don't already know -- gluten, or at least wheat, makes me sick.  What I don't know, however, is what value there is in actually having that number in the first place.

 

Should I make myself sick to get a positive diagnosis?

Should I just concede that I likely am coeliac and just continue doing what I'm doing, knowing I won't ever get a positive diagnosis?

 

Really not sure what to do here... 

 


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



Celiac.com Sponsor (A8-M):



w8in4dave Community Regular

Well you don't know that you weill never get a positive Dx. But I say if what your doing works for you!! Then do it!! Like your Dr. Said "You already know" So really if it was me? Why put your self thru it? When I first got my DX that said I was negative, I just decided to go on a non processed food diet!! Lil did I know the Dr.s office would call and say I did have Celiac. So yea I'd stick with the celiac diet and go for making your self healthy!! 

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. - sc'Que? commented on Scott Adams's article in Product Labeling Regulations
      1

      Global Experts Recommend Gluten Reference Dose: What It Means for Celiac Safety (+Video)

    2. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      What's your daily meals? Protein bars?

    3. - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

    4. - Seabeemee replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      My journey is it gluten or fiber?

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

    • Total Members
      133,170
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • xxnonamexx
      What are your daily meals? Guilty pleasure snacks? Protein bars? I feel when looking for gluten free foods they are filled with sugar cholesterol. Looking for healthy gluten-free protein bars. Something to fill since sometimes I feel like not to eat anything. Especially if on vacation and unsure of cross contamination I figure go with a salad and protein bar to fill and play it safe.
    • trents
      Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.
    • Seabeemee
      Thanks for your reply Trents…most appreciated.  I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population?  Also,  I found what you said about NCGS very interesting and I appreciate you mentioning that.  I’ve worked hard to research and advocate for myself with my Hematologist and now with a new GI, since my bowel surgery and to maintain my Vitamin B12 health concurrent with keeping my levels of Iron in the optimal range. I’ve been tested for SIBO (do not have it), biopsy showed negative for HPylori, and have had Fecal studies done (nothing showed up) and I understand how a loss of a large amount of bowel could be highly impacting re: SIBO, malabsorption and motility issues. So I’ve managed pretty well diet and elimination-wise until just recently. That said, this new problem with extreme bloating, distention and upper girth, NAFLD just occured over the last 4 months so it is new for me and I thought celiac might be a possible issue. I’ll probably just continue on in this less gluten/carbs seem to be better for me and see how reintroducing certain foods go.  Thanks again.    
    • xxnonamexx
      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    • JoJo0611
      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
×
×
  • 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.