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

Blood Test Normal - Where To Go From Here?


jvdb

Recommended Posts

jvdb Rookie

So after a lot of trouble to get my blood test results I have learned that they are negative and I have mixed feelings.  Likely not celiac - great I don't have to worry about every single crumb of gluten.  But now I am back to square one, what is causing all of this for me?  I still feel strongly that it is food related considering I have a flat stomach in the morning and slowly thoughout the day inflate.

 

Other symptoms:

-chronic (almost daily) diarhhea

-periods of constipation

-undigested food in stool

-HUGE bloating (flat stomach to a few months pregnant by end of day)

-Trapped air feeling and air cramping

-daily mild headaches (no migraines)

-daily fatigue despite 8 hours of sleep every night

-mild adult cystic acne

-lactose intolerance

 

 

I am waiting to see the gastro and will in two months.  I know it is possible to have celiac with a "normal" blood test and be diagnosed with an endoscopy but now I am having my doubts that it is celiac at all.  What would you suggest I do in these two months while I wait?  Should I try go gluten free and see if I feel better?  I have a feeling if my doctor DID want to do an endoscopy that I would have enough time to do a gluten challenge before the test date (and that is assuming he even decideds to).  I have tried keeping a food & symptom diary but there were no obvious triggers since the symptoms occured daily.  So what would you do?


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

I would make sure you had a complete celiac antibody panel to include both IgA and IgG versions of tTG and DGP along with Total Serum IgA; nutrient testing of minimally B12, D, Iron along with recent CBC and CMP so that all the results are available for your gastro appt.

Do not remove gluten until the GI appt is completed in case you decide to have an endoscopy with biopsy of the small intestine.

Once you are certain you are done with testing remove ALL gluten for at least three months.

Porcelina Contributor

I'm not sure if you've tried this yet or not, but keep a food journal and record how you feel after every meal.

This is how I found out that wheat was my issue, amongst fructose and 'sugar free' foods. Wouldn't hurt to try. Then look up the FODMAPS diet. But I'd also keep the gluten in the diet for now, at least until you find out your endo date.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    3. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    4. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,818
    • Most Online (within 30 mins)
      7,748

    STy
    Newest Member
    STy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.