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
melibig
Posted

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
kareng
Posted

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
melibig
Posted
  • Author

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
kareng
Posted

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.

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. Scott Adams
      - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Have Tru Joy Sweets Choco Chews been discontinued??

      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    2. Scott Adams
      - Scott Adams replied to chrish42's topic in Doctors
      5

      Doctors and Celiac.com

      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating...
    3. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes...
    4. MauraBue
      - MauraBue posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Have Tru Joy Sweets Choco Chews been discontinued??

      Help! My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac. Her favorite candy in the world is tootsie rolls. I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase. Have they been discontinued?? Does anyone have another recommendation...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others thanks again for all the great info
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,259
    • Most Online (within 30 mins)
      7,748
    MauraBue
    Newest Member
    MauraBue
    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

    • Scott Adams
      Have Tru Joy Sweets Choco Chews been discontinued??

      By Scott Adams · Posted

      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    • Scott Adams
      Doctors and Celiac.com

      By Scott Adams · Posted

      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
    • MauraBue
      Have Tru Joy Sweets Choco Chews been discontinued??

      By MauraBue · Posted

      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others   thanks again for all the great info    
×
×
  • 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.