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

Is It Celiac Or Something Else?


melibig

Recommended Posts

melibig Newbie

I will try not to ramble so excuse me if I do.

 

Starting from the beginning. 

 

After the birth of my second child Sept 2013, my body just felt tired and achy, I was tired all the time, and my joints hurt. I went to the dr they did blood work, and said that that is just how it is going to be after kids. I didn't believe that for a minute. A few months after that I started getting an upset stomach a few times a week (august 2014). I started seeing a gastrointerologist late October and he suggested a colonoscpoy and endoscopy. With that he said that my stomach lining had similar patterns to that of Celiac. He did blood work after that and told me to try a gluten free diet and see how that helped. 

 

I have been gluten free since November, with a few accidents, and I am feeling better but not 100%. The most improvement has been with my energy levels and joint pain. I am still having an upset stomach and nausea a few times a week. I have a follow up apt scheduled for next week but wanted to know if any of you have experienced this before. I feel like I have been really strict with my diet and if I have gotten gluten it has not been intentional. It is incredibly frustrating to live this lifestyle and it not be better. Don't get me wrong I am incredibly thankful for the energy and my joint pain to be gone, I just would like to know what the deal is with my stomach!! 

 

Thanks in advance for any help or advice!!


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Do you actually have Celiac or not?  The doc sounds a bit wishy washy with this "try gluten-free" stuff.  If it isn't Celiac, he should be looking for other issues.

melibig Newbie

Do you actually have Celiac or not?  The doc sounds a bit wishy washy with this "try gluten-free" stuff.  If it isn't Celiac, he should be looking for other issues.

Now that I have had time to think back on the whole experience he was wishy washy. My blood tests were never discussed with me, he just said the lining looked similar to Celiac. 

 

I am debating on whether or not to eat gluten again and see what happens. I don't want to go full blown because I am feeling more energized I just don't want to be as strict if its not necessary. 

kareng Grand Master

Now that I have had time to think back on the whole experience he was wishy washy. My blood tests were never discussed with me, he just said the lining looked similar to Celiac. 

 

I am debating on whether or not to eat gluten again and see what happens. I don't want to go full blown because I am feeling more energized I just don't want to be as strict if its not necessary. 

 

 

I would suggest you get copies of the Celiac blood tests and the biopsy (pathology) report from the endoscopy.  Celiac si not diaganosed by how a stomach lining looks.  A GI doc will take biopsies of the small intestines and then a pathologist will look at them under a microscope.  Sometimes the damage in the small intestine is bad enough that the doc can see it with the scope - but they still take multiple biopsies to be certain.

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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. 0

      Celiac Friendly Sports Camps - Academy Camps - Virtual Open House

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

    5. - Scott Adams replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

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

    • Total Members
      133,213
    • Most Online (within 30 mins)
      7,748

    Isla M
    Newest Member
    Isla M
    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

    • trents
      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
      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
      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
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
×
×
  • 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.