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

New Endoscopy

Guest NitaB

By Guest NitaB
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

Guest NitaB
Guest NitaB
Posted

Hi,

I haven't been here for awhile! I guess I'm one of the lucky ones that feel much better on the gluten-free diet. I had conflicting tests back in May and June. The upper endoscopy showed flattened villi, resembling Celiac. But, my blood test came back negative. I was put on the gluten-free diet, and have done a good job of it for over 7 months.

I had my 2nd endoscopy today. The lesions have vastly improved, so the GI Dr. gave me a positive diagnosis of Celiac. And a lifetime gluten-free diet. The biopsies will be back in 3 weeks. They were fine last May, so not too worried about them.

I'm just glad to report that the lesions are healing! I know it's very possible to be getting cross contamination, but not so much as to keep from healing!

I still don't like this diet. But, I'm glad to know my health is in my own hands, and that I can heal! My oldest brother died of colon cancer, and may well have had celiac disease and never known!

Thanks for all the prior help here! This board is great for newbies to learn from others in the same boat!

Nita

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

Celiac.com Sponsor (A8-M):


phakephur Apprentice
phakephur
Posted

Hi folks,

Nita's post is troubling to me. A lot of celiac related literature recommends annual blood test to check for compliance to the gluten free diet. If you can have a negative blood test and still have intestinal damage, what is the point of the annual screening? Is Nita's situation so unusual that I shouldn't worry about that?

Nita - I'm glad you're feeling better.

Sarah

cmom Contributor
cmom
Posted

Hadn't heard about the yearly blood tests. My gastro has me come in for blood tests and small bowel with follow through xray every 3 years. If he doesn't see a problem, he says I don't need to come in sooner.

Guest NitaB
Guest NitaB
Posted

Thanks Sarah!

I haven't heard of annual blood tests, either. And the old blood tests weren't as accurate, as I had one over 8 years ago that was negative. That's why I've had to suffer so long with this, as it was diagnosed as IBS.

I have the same GI Dr. as then, but the newest blood test is much more accurate, that's why he was so unsure it really was celiac disease. But, after seeing the improvement in the villi, he gave a definite diagnosis of celiac disease. He had said none of the blood tests are 100%. The test will come back negative without gluten in your system anyway. The upper endoscopy is how they found the lesions in the duodenum last May.

Nita

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,382
    • Most Online (within 30 mins)
      7,748
    victimm
    Newest Member
    victimm
    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

    • lauramac
      COVID19 and getting glutened

      By lauramac · Posted

      I was diagnosed with Celiac Disease abput 10 years ago. When I was initially diagnosed my only "symptom" was persistently low iron (that occasionally dipped into anemia). After diagnosis,  over time, I started to develop symptoms when exposed to gluten--they have been overall relatively minor, but have increased over time (and yes, I realize my guts are likely being wrecked regardless of the symptoms) on the rare occasions I've been exposed to gluten. I had COVID19 last week (now testing negative) and was glutened last night (never trust anything labeled gluten-free in a mixed environment). I had my traditional symptoms (sharp gas pains, burping, nausea, stomach ache) but they were accompanied by new, more intense symptoms (muscle cramps all over my body--feet, calves, biceps, neck, shoulders, jaw, abdomen, I'm still sore today and cold sweats). I spent about 6 hours writhing before I felt well enough to get up.  I have been told by my allergist that COVID19 can cause your immune system to hyper react. I'm wondering if that's what happened here.   Has anyone else had experience getting glutened post COVID19? Relatively shortly after recovering from COVID19? Was it a more extreme reaction or same? I can't seem to find any articles on this, so I thought I'd ask the community.  Thank you!
    • Rogol72
      Draft gluten-free ciders… can they be trusted ?

      By Rogol72 · Posted

      A friend of mine is in the bar trade most of his life and has never heard of lines being mixed for different type of beers and ciders. Better to stick with cans.
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      Thanks very much for confirming my suspicion @Scott Adams! That helps a lot because I'm really trying to track down and get rid of these sources of cross-contact and so I'm going to just rule out the draft ciders and hope that helps. Also @Rogol72 its nice to hear you haven't had a problem on that side of the pond - draft cider lines being used for cider only certainly sounds like the right way to do it, but I think that must not always be practiced over here! 
    • Zuma888
      Gluten challenge and Hashimoto's Thyroiditis

      By Zuma888 · Posted

      I didn't ask a doctor about this actually. I did ask several doctors a long time ago and they told me gluten has nothing to do with hashimoto's. One of them told me to do a gluten challenge to test for celiac, but at the time I was in graduate school so couldn't afford to be even more ill than I was. If you have the symptoms, I really don't advise you to do a gluten challenge. It messed me up mentally and physically for months. At the same time, I benefitted from doing the challenge in the sense that it convinced me that all my symptoms were truly from gluten - even stuff like insomnia! So now I am terrified to eat gluten, whereas before I would have a little once in a while and not notice anything dramatic. 
    • Winnie-Ther-Pooh
      Gluten challenge and Hashimoto's Thyroiditis

      By Winnie-Ther-Pooh · Posted

      I am in a similar situation where I can't feasibly do a gluten challenge but have all the symptoms and I have 2 celiac genes. I'm curious if your doctor advised you to eat as if you had a diagnosis or if they were more dismissive about it. 
×
×
  • Create New...