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

Positive Blood Tests But No Biopsy

Rebecca92

Recommended Posts

Rebecca92 Apprentice
Rebecca92
Posted

So I was diagnosed via a celiac panel approximately three years ago and have been gluten free since (minus the rookie mistakes and CC) My symptoms have definitely gotten better but I don't feel 100% so I decided to see a gastroenterologist I've been having a lot of nausea with some vomitting along with having to run to the bathroom a few time a day but had trouble going off and on . While I'll admit that sometimes I mess up and CC myself (I live with gluten eaters lol) there's no way it's gluten related I am extra careful when preparing and choosing food and cosmetic products. I had an endoscopy at a drs.office a few months ago and they did find a small ulcer and said that my small intestine was inflamed but didn't seem too worried about it, but honestly I don't trust the guy anymore he spent a total of two minutes talking about my results :\ but that's another rant. They gave me horse pills to take twice a day before I eat and being that I'm young and in college of course I never ended up taking them all. The gastro doc gave me a two week supply of an acid blocker to try to heal up an ulcer if there is one.  The gastro was surprised that the positive celiac blood test wasn't followed with a biopsy of the duodenum because there are false positives with blood tests. He said they would call in two weeks and see how I feel, and if I'm not feeling great then we should go ahead and schedule and endoscopy and a colonoscopy. Obviously I'm not thrilled with this idea so I'm hoping the acid blocker works (which the nasea is getting better) but if I'm still having "bathroom" issues and an extremely tender abdomen on the left side I'm thinking about doing the tests. For the endo he said that if I am a celiac even if I've been gluten free for almost three years I will most likely show some damage and also mentioned checking to make sure there's not a small bowel malignant tumor or something and the colonoscopy to check for microscopic colitis. I'm thinking about maybe just doing the endo for now and only doing the other if I get no answers. It was extremely scary to hear him say the word cancer he said that about 3% of celiacs get the malignant tumors. I was just wondering if anybody had any advice or if anyone knew what exactly he meant by false positive, if it wasn't celiac then what else could it be? I mean whatever it is it obviously likes a gluten-free diet so there's no way I'm going back but it just has me wondering, the doctor didn't really explain much about false positives. I'm sorry if this seems long or rambling but this is the only place I can ask these kinds of questions talk about these things without people getting grossed out or confused lol unfortunately I am the only celiac I know in R. The chapter in my town always meets on saturdays...and I always work saturdays. Go figure lol

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

I'm pretty tired to respond, but I have to say that if you've been diligent about being gluten free for three years, you should not have any damage in your intestines.  We have others here who have been scoped years later and their intestines show no damage.  That said, you may be glutening yourself while living with gluten eaters.  But, maybe not.

 

You might have something else going on like Crohn's or maybe just picked up h. pylori which could be causing your ulcer.  So, I'd go with the endoscopy and colonoscopy.  If they do test for Celiac, make sure they follow the procedures outline on the University of Chicago's celiac website.  At least six or seven tissue samples should be taken.  But, if you've been gluten-free for years, your blood test will be negative and it's a crap shoot regarding the biopsy.  

 

Good luck!  Research and get empowered! 

WinterSong Community Regular
WinterSong
Posted

Definitely check out the University of Chicago's page. My understanding is that false positives are rare, but it is definitely something to look into because you're still experiencing symptoms, and the other possibilities are serious. 

 

Your biopsy and test results will most likely come back as negative. If you get a gene test done, you can see if you even carry the gene to have Celiac. It could bring you a little closer to figuring out what's going on. 

 

If you do have Celiac, you could be dealing with CC or a secondary food intolerance (which is common).

 

Good luck and feel better!

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. Haugeabs
      - Haugeabs replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil. Gluten free but not certified gluten free. Soy free, GMO free.
    2. trents
      - trents replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even...
    3. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    4. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    5. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748
    Donna Shields
    Newest Member
    Donna Shields
    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

    • Haugeabs
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Haugeabs · Posted

      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil.  Gluten free but not certified gluten free. Soy free, GMO free.   
    • trents
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By trents · Posted

      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even though celiac disease and gluten sensitivity are, technically speaking, not allergic responses, it would seem, nonetheless, appropriate to include "gluten" in that list for the present purpose. That would insure that food companies would be consistent with including this information in labeling. Best estimates are that 1% of the general population, many undiagnosed of course, have celiac disease and more than that are gluten sensitive."
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
×
×
  • 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.