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

Waiting On Test

Bune

Recommended Posts

Bune Newbie
Bune
Posted

Hi all!

I've had various digestive issues for over 6 years now. Mainly diagnosed as GERD. In the last year or so my symtoms in addition to reflux have increased. My Dr. suggested that Celiac might be the cause of my increased symptoms. I have to have an EGD (Endoscopy) done for the GERD to biopsy my esophogus so he said he'd biopsy my small intestines while he was in there.

After doing some reading on celiac disease it all makes sense and I would be surprised it he tells me I don't have it. Eventhough the thought of eliminating gluten from my life seems to be a bit of a daunting task. I would actually be relieved that there is someting that I can do about all of my pain and symptoms and it doesn't involve drugs with nasty side effects.

It kind of bugs that I have to wait two weeks to get a test (plus however long it will take to get results) before I can make any changes, so I guess I'll have to live with the pain and bloating until then. I'm just going to take the opportunity to enjoy some foods that I know would be off limits if it is celiac disease.

I just thought I'd drop in and say Hi, I'll post again once I know more.

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

Celiac.com Sponsor (A8-M):


plantime Contributor
plantime
Posted

Do your research now, so you will be prepared. Let us know how the testing turns out.

Bune Newbie
Bune
Posted
  • Author

Thanks Dessa. I am certainly doing a lot of research and reading. It's exciting (that I may have found the answer and can finally do something) but daunting, Gluten is in everthing. The obvious things seem easy enough to replace or cut out but it's the hidden things that are hard to keep up with. Eating out will be the biggest change. Right now I eat out pretty much everyday for lunch and I don't think any of my current restaurants will do the trick, so that will be a major change. I'll have to start brown bagging it.

  • 2 weeks later...
Bune Newbie
Bune
Posted
  • Author

I had my EGD yesterday. Doc didn't say much other than the results would be available in about two weeks and that my Espophagus (because of Reflux) and Small Intestine were very inflamed. When my mom (who took me) asked about the probablity of Celiac he would only say that it was very possible. When she told him that we were starting a gluten-free diet he said that was probably a good idea.

I go back to see him in a month.

Does anyone know about the testing for other allergies to food? Should that be done with my GI or my Family Practitioner or another specialist? Is it needed right away or should I just wait and see if I'm still having issues after cutting out Gluten? I sure would like to have the quickest route to feeling MUCH better Quickly!

Thanks for listening!

Brenda

  • 2 weeks later...
Bune Newbie
Bune
Posted
  • Author

GRRRRR! i just got a call from the nurse at the Dr.s office. She said that the biopsy came back normal and that I do not have Celiac's. The results from the Gastric Emptying scan came back that I have Gastric Parisis (stomach does not empty on time) the answer to that is to put me on Zelnorm, which I started about a week after my EGD test (which I went gluten-free immediately after) with in a week I was completely sick and in pain again. So now I'm back at square zero with no answers except to take drugs that just make things worse for the rest of my life.

I'm so frustrated. My next appt with the GI isn't until 8/25. I don't want to start eating gluten again, I've been feeling so much better.

Is it possible that I still have celiac disease if the Biopsy comes back normal?

Guest nini
Guest nini
Posted

yes it's possible.

but I am one of those people that believe that gluten intolerance is the cause of a lot of conditions. It's possible that they didn't take enough samples or took samples in areas with no damage, or you just don't have damage YET. I believe that if your body is telling you that gluten is bad, by you feeling better being gluten free, then there is your answer.

KaitiUSA Enthusiast
KaitiUSA
Posted

The problem with biopsies is they can rule celiac in with a positive biopsy but they can't rule it out with a negative one. There could be no damage as of yet or sporadic damage that they missed.

Were your blood tests positive? If you had blood tests which ones were done?

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

Celiac.com Sponsor (A8-M):


Bune Newbie
Bune
Posted
  • Author

Kati

No blood tests. and now that I've been gluten-free for two weeks they would be skewed right?

I'm going to try to find a way to do the Enterolab testing so that I don't have to be eating gluten.

so frustrating!

Brenda

KaitiUSA Enthusiast
KaitiUSA
Posted

An Enterolab is probably your best option at this point.

Blood tests would not be valid now since you have been gluten free.

Archived

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

Go to topic listing

  • 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. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Watch this space! 😊
    2. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but...
    3. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10). Since then it has gone up to 10. I am not happy with that. I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I...
    4. Mike Maurillo
      0

      Celiac Friendly Sports Camps - Academy Camps - Virtual Open House

      until
      Hi everyone, I’m Mike, one of the co-founders of Academy Camps, a sleepaway sports camp for kids ages 10 to 16. I’m posting here because one of our camp families whose daughter has Celiac encouraged me to share our experience wit...
    5. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer. Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,215
    • Most Online (within 30 mins)
      7,748
    Demery
    Newest Member
    Demery
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Watch this space!  😊
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Low iron and vitamin d

      By lizzie42 · Posted

      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By Scott Adams · Posted

      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
×
×
  • 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.