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

Ta-da! I'm New!


justjane

Recommended Posts

justjane Rookie

Hi! I am 19 and I've been struggling with stomache aches for the past 8 years. I've had a lot of the tests done, except they were done when I was 15. I am not sure if the doctors ruled out Celiac, but I have my test results just need some help deciphering them. If any of you experts have any ideas, I'd love to hear it.

Also, I started a *real* gluten-free diet in May and have only been glutened two times. Other than the times being glutened, my asthma which is very severe, has stopped!! The top of my belly is starting to feel a lot better, but now my ovary area hurts like there are razors in there. This happened to me in April of 2004 and it was horrible. I have other symptoms too when on gluten. I don't know what to make of all this stuff:

9-26-03 TTG Tissue Trans Glutanomace = 9 (apparently anything under 20 is normal)

9-27-03 Pelvic ultra sound - negative

Abdominal sonogram - negative

8-1-03 Colon/upper endoscopy

Multiple biopsies

Transvers colon - mild active colitis

Left colon - mild chronic active colitis

Villi - normal

Villi blunting - capsule

So, as you can see this was a few years ago. Could my villi have changed sinse then?

I am planning to get a blood test soon. Have I been off of gluten long enough to screw up the blood test?

If anyone would care to share, I'd appreciate.

justjane


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



Celiac.com Sponsor (A8-M):



utdan Apprentice

I'm no expert on celiac yet but I just wanted to say Welcome! I wish I had known I was celiac at 19!

Ursa Major Collaborator

Hi Jane, and welcome to our board. Yes, you have been off gluten too long for testing to mean anything. But I say your improvements speak volumes. Your asthma went away off gluten, that's fabulous! That in itself is a good enough reason to stay away from gluten forever, and is all the evidence you really need. Keep up the good work!

schuyler Apprentice

Welcome. I am not an expert, but I do know that being off gluten can effect your test results. However, since you said that you had asthma while eating gluten, I'm not sure that it would be a good idea to eat gluten again. Obviously, you are improving since going gluten-free, so to me, that's showing that you do have a problem with gluten. If a diagnosis is important to you, then you should go back on gluten until your testing. However, regardless of the resluts, you should go gluten-free for afterwards since you have improved so much being gluten-free. Good luck

Danielle

mommida Enthusiast

I don't reccomend a gluten challenge for any one. If you have further concerns about diagnoses, you could consider a genetic testing. Doctors still will not take that as an official diagnoses, but combining those results with the dietary response most will consider a gluten free diet the best course for you.

L.

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

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

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,816
    • Most Online (within 30 mins)
      7,748

    KTH
    Newest Member
    KTH
    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.