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

Biopsy Results In Already


Meg123

Recommended Posts

Meg123 Explorer

Well it came back negative :( I'm upset with myself for spending so much money on something I knew had a significant chance of coming back negative even if it was positive....

I don't have any of the other conditions that cause the raised tTG, and it's going up slowly, so I'm taking it as celiac disease, like you've all been telling me over the past months :rolleyes:;) I just wondered if early osteo arthritis might cause the raised ttg, but apparently it's the autoimmune one which can cause that, which i def dont have.

So I have an appointment with Dr on Monday to take one last base blood test and then I'm gluten free strict strict strict for at least 8 months. Then I'll do a repeat blood test to satisfy my own curiosity. But I'll commit to 8 months. I hope to feel a lot better soon too :)

Thanks for all the advice and support, sorry I've been such a pain with all the waiting etc My husband doesn't want to hear about it anymore, I guess I've been unbearable..


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



Celiac.com Sponsor (A8-M):



Hawthorn Rookie

My husband doesn't want to hear about it anymore, I guess I've been unbearable..

For what it's worth Meg, I suspect I am unbearable too. I guess when you feel so ill, it's hard to think of anything else, and it's hard to walk around happy and smiling when you are in constant pain and worried about what on earth is wrong with you. It is hard.

Good luck with the gluten free diet, and I really really hope that you feel better soon.

Will you be undergoing further testing to rule out other causes?

Meg123 Explorer

For what it's worth Meg, I suspect I am unbearable too. I guess when you feel so ill, it's hard to think of anything else, and it's hard to walk around happy and smiling when you are in constant pain and worried about what on earth is wrong with you. It is hard.

Good luck with the gluten free diet, and I really really hope that you feel better soon.

Will you be undergoing further testing to rule out other causes?

Thanks Hawthorn :)

Yeah it is hard, and is especially distressing when you have young children who need and deserve a lot more of me than I have given them / have been able to give them...

No, I'm not going to pursue anything else just yet. Over the years, I've spent a fortune on this, that and everything else. I've had so many tests, scans etc etc and its always a case of back to the drawing board. But I cannot deny, I felt better gluten free, except, like I said in your thread, that I still wasn't quite quite right, but would have still been having traces for sure.

The other thing is that they recently discovered that I'm Insulin Resistant. When I am gluten free, I will be able to better fine tune the dose for that medication, and I'm hoping that between having my insulin resistance sorted, eating low GI and gluten free, that I'll lose weight etc and still hoping to feel better. IF in 8 months my tTG hasnt gone down then maybe I'll push to find out what other autoimmune disease I have(???) but that's the immediate plan ;)

ravenwoodglass Mentor

The osteoarthritis may be linked to celiac and hopefully the pain will be relieved after you have been on the diet for a bit. Do your pre and post meal checks for your blood sugar. After you have healed you may find that you are not insulin resistant any longer. Can't say for sure but since I was diagnosed when glutened as diabetic I decided to wait on meds and went with low GI index foods and blood sugar testing and found that it was that glutening that made me appear to be diabetic. It may not be the case for you but hopefully you will stablize as your body heals. Do make sure to check any meds they have given you to be sure they are gluten free.

Meg123 Explorer

The osteoarthritis may be linked to celiac and hopefully the pain will be relieved after you have been on the diet for a bit. Do your pre and post meal checks for your blood sugar. After you have healed you may find that you are not insulin resistant any longer. Can't say for sure but since I was diagnosed when glutened as diabetic I decided to wait on meds and went with low GI index foods and blood sugar testing and found that it was that glutening that made me appear to be diabetic. It may not be the case for you but hopefully you will stablize as your body heals. Do make sure to check any meds they have given you to be sure they are gluten free.

Thanks Ravenwoodglass, for all your help and advice over the past months. I always look forward to your posts :)

love2travel Mentor

Well it came back negative :( I'm upset with myself for spending so much money on something I knew had a significant chance of coming back negative even if it was positive....

I don't have any of the other conditions that cause the raised tTG, and it's going up slowly, so I'm taking it as celiac disease, like you've all been telling me over the past months :rolleyes:;) I just wondered if early osteo arthritis might cause the raised ttg, but apparently it's the autoimmune one which can cause that, which i def dont have.

So I have an appointment with Dr on Monday to take one last base blood test and then I'm gluten free strict strict strict for at least 8 months. Then I'll do a repeat blood test to satisfy my own curiosity. But I'll commit to 8 months. I hope to feel a lot better soon too :)

Thanks for all the advice and support, sorry I've been such a pain with all the waiting etc My husband doesn't want to hear about it anymore, I guess I've been unbearable..

You've really been through a lot lately so take the time to heal, mentally and physically. Remember, too, that only 39% of all biopsies are done correctly and there are lots of false negatives. Do you know perchance how many biopsies were taken? Apparently at least 8-11 are needed for accuracy.

Regardless, you know yourself far better than anyone else and if going off gluten makes you feel much better you know precisely what to do! :D

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. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

    2. - trents replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

    3. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

    4. - trents replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

    5. - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

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

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
×
×
  • 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.