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 Think I Might Have Celiac

kara7

Recommended Posts

kara7 Rookie
kara7
Posted

Hi, My name is Kara. I am 23 and have has stomach problems since I was about 13. Things have just recently within the last 2-3 years gotten worse. Two years ago I had a colonscopy that showed lymphocytic colitis. My doctor prescribed me Asacol and sent me on my way. I was still dealing with horrible diarrhea up to 10 bm's a day. Then this past summer my symptoms totally changed. I was all of the sudden constipated and bloated I looked like I was 6 months pregnant. I have had a gallbladder ultrasound done that shows I have a fatty liver. I am constantly fatigued. Diarrhea almost everyday with intermittent constipation. I have been tested for celiac and the lab tests came back negative. I do have a low B-12. A couple of weeks ago I was very strict on eating no gluten, and I think it helped. My whole body felt better. Then I read that you shouldn't stop eating gluten if you are going to be tested. I am gaving another colonscopy and EGD on 12/7 so I have to suffer until I have this done. Do you think I could have Celiac eventhough the tests are normal? Thanks for your help. So tired of feeling crappy all the time.

Kara

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

Celiac.com Sponsor (A8-M):


lonewolf Collaborator
lonewolf
Posted

Welcome to the forum!

Yes, you could have Celiac Disease even if the tests come out negative. There is a significant rate of false negatives. You could also have non-Celiac gluten sensitivity, which won't show up on mainstream Celiac tests, but can be just as bad. You don't have to be on gluten for a colonoscopy and I'm sorry I don't know what an EGD is. You do want to stay on gluten if you're being tested for anything specifically for Celiac, but you could always try the diet otherwise and just see how you feel.

Lisa Mentor
Lisa
Posted

Kara:

I am sorry that you are having a tough time.

I would like to suggest something that I think is very important. Instead of having a colonoscopy again, I would strongly suggest that you have an endoscopy (small intestine exam by scope). You already know what is in your large intestines. Please exam your small intestines. And, if you choose to do so, please continue eating gluten. Ask the GI to take 8-10 biopsy samples to be tested. (INSIST, AND, NO LESS..you are paying for a service!!)

Your symptoms "sound" very much like Celiac Disease.

It is often recommended that instead of continued testing, that a gluten free diet may determine celiac or an intolerance to gluten, buy diet response. But in your case, I would suggest the testing via endoscopy exam becaue of your cystopic colitis.

I hope that this makes sense to you. If not, please PM me if you choose.

You are on the right road, keep on trekkin. :)

Lisa

kara7 Rookie
kara7
Posted
  • Author

Thanks for your replies I am scheduled for an (EGD) or otherwise known as an upper endscopy. Any tips for doing the Trylite prep. I am freaking out about the prep. When I had my first prep I did the Visicol prep (pills) and that was a nightmare.

Thanks

Kara

Archived

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

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


  • Member Statistics

    • Total Members
      129,794
    • Most Online (within 30 mins)
      7,748
    DebLynnH
    Newest Member
    DebLynnH
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Russ H
      Confused about my results

      By Russ H · Posted

      There is a predictive model for children on this link. Depends on sex, HLA genes and number of affected close relatives.  The model only goes up to age 12 so it would be interesting to know what the lifetime risk is. https://hputter.shinyapps.io/preventcd/
    • thejayland10
      TTG IgA and IGA elevated mildy

      By thejayland10 · Posted

      That is a very good point I do not know if they truly ever went down. With my nutrient levels all being good, CBC, metabolic panel I assumed everything was fine over the years. Now Im worried this is refractory celiac or something else 
    • RMJ
      TTG IgA and IGA elevated mildy

      By RMJ · Posted

      I don’t know how common it is, but it happens.  Total IgA going up is not necessarily celiac related.  The body can make IgA antibodies against all sort of things.   But if I understand correctly that until recently you haven’t had a celiac blood test since diagnosis, how do you know that your recent blood tests are a mild rise, vs never going down to the normal range? That also can happen, although not too common. Some people with celiac disease do react even to purity protocol certified gluten free oats. Removing oats from your diet for a few months and retesting is probably a good idea.
    • thejayland10
      TTG IgA and IGA elevated mildy

      By thejayland10 · Posted

      interesting I did not know that was that common or could take that long.  When I was diagnosed 15 yrs ago I was told just follow gluten-free diet and follow up with primary care doctor (who never checked celiac panel again). I felt way better and all the major symptoms went away. It wasn't until recently at 25 (14 yrs after diagnosis) that I thought to follow up with a gastro doctor who then did a celiac panel and noted those minor elevations 3 months ago then I got them checked again by another doctor the other week and were showing roughly the same thing.  I am very strict with what I eat and dieitican was maybe thinking it could be oat flour. I do eat a fair amount of processed food but I will not touch anything unless it is certified gluten free.  Do you see this pretty commonly with others? Having mild rises in TTG IGA and IGA who have been on gluten-free diet for years? 
    • RMJ
      TTG IgA and IGA elevated mildy

      By RMJ · Posted

      Do you have any other results from either of the two labs where you’ve been tested recently?  If so, are the newest results from that lab elevated over previous results? It took me 5 years to get all of my antibodies into the normal range. Then 3 years later one went up into the positive range.  I realized that I had started baking with a different brand of gluten free flour.  When I stopped using that flour the level went back to normal.  Has something changed in your diet, environment, activities, medications or other areas where you could possibly be exposed to gluten? 
×
×
  • Create New...