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

Tested negative 3 years ago still unsure


Cara1

Recommended Posts

Cara1 Newbie

Hello. I've been dealing with digestive issues for the past few years, went to various doctors and eventually found out I'm lactose intolerant. I thought the mystery was solved when the LI was discovered, but, I started having digestive problems when not consuming lactose in the last month. I am going to go to a GI soon, but, I wanted some insight from those with Celiac to see if it could still be a possibility.

I had a blood test done 3 years ago for Celiac that was negative but, with new symptoms, I question it.

Issues I've dealt with:

-mild inflamed rib feeling off and on on both sides

-never feel full when eating (feel hungry then just not hungry, never like I've had enough food)

-chronic issues with BV (female infection)

-never have a healthy BM anymore the last month-loose in the morning and if I go again it's small and hard (also acidic smelling stool)

-anxiety due to the stomach issues

-the worst symptom I have developed now is excess gas every night that I can't get rid of until I go to the bathroom the following morning

Does any of this sound like Celiac? Thanks.

-


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

The only way to know for sure is to get retested.  Be sure to ask for the complete blood panel because I personally did not get a positive on the standard TTG screening test yet I had moderate to severe damage.  

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  
 
(Source: NVSMOM -- ?)

 

Welcome to the forum and let us know how it goes! 

 
Cara1 Newbie

Thanks for the information. Yeah, my doctor definitely didn't do the full testing.  I've heard recently how the blood tests aren't always accurate, but, I wasn't told that after the test. Do you know if endoscopies (with biopsies) are reliable or is there still a chance they are not?

Also, does anyone know the percent of those who are lactose intolerant and also have Celiac disease? I've never been able to find info on this but wanted to know because I know Celiac can cause lactose intolerance.

Jays911 Contributor

Endoscopies are pretty accurate. My blood work was iffy. My Doc predicted I was not a cellac, but did the scope. I am. And am glad he was willing to do the right thing. My life has been transformed. 

cyclinglady Grand Master

Lactose intolerance is very common among newly diagnosed celiacs, but it is also common in the general aging population and different races (e.g. Asian).  So, I can not answer your question.   An endoscopy is still considered the gold standard in helping to diagnose celiac disease.  But taking just the typical 4 to 6 samples can be a hit or miss!  The small intestine is vast -- the size of a tennis court.  Plus, biopsies are taken at the top of the small intestine and can miss damage as the intestin is about 20 feet.  Sorry, but there are no easy answers when it comes to diagnosing celiac disease.  ?

Cara1 Newbie

Thanks for the help. I figured an endoscopy was better. I can't believe how hard it is to diagnose celiac disease, at least for some. It doesn't help either that doctors (at least in my experience) don't want to even do much testing and  just want to say "it's probably IBS." They didn't even suggest to me before the possibility of food intolerances/allergies causing my stomach problems. Only my GP ordered the one celiac test, and I figured out the LI (and confirmed with my doctor) after I started noticing I would get sick 3-5 hours after ingesting milk.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,330
    • Most Online (within 30 mins)
      7,748

    TamSta214
    Newest Member
    TamSta214
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • somethinglikeolivia
      Responding to both of your replies: thank you so much!! That makes a lot of sense and helps me feel better about it - I really appreciate the clarification and recommendations. You guys have been very helpful and this site is a gift. Thanks again! 
    • trents
      I think giving attention to the main sources of exposure such as direct consumption of gluten and gross cross contamination with reasonable attention to handwashing and thorough counter top cleaning and dishwashing should cover cross contamination issues. The biggest precautions would be eating in restaurants and at other's homes. Don't get paranoia over it and don't make trouble where there is none. As far a what you communicate with your physicians, just tell them what you know. Strongly positive antibody tests, negative biopsy, positive symptoms when consuming gluten with clearing of symptoms when gluten free.  
    • trents
      Occasionally we do see anomalies where celiac antibody tests are positive but biopsies are negative, and even visa versa. Sometimes, damage to the small bowel lining is patchy and unless numerous samples are taken from various areas, the damage can be missed. So, there's that issue as well. I think in your situation, the tell-tale indicator is the difference in symptoms between when you were off gluten and when you were consuming it.   
    • somethinglikeolivia
      Okay, that makes sense - so based off of the 90% odds that it is positive, it’s worth switching to fully gluten-free? How strict do I need to be with cross-contamination, handling, etc. Is it something that can go by feel, for instance if I feel okay making my family sandwiches and handling the bread as opposed to eating it, or is it something that is causing silent damage even if I feel fine? Also, do I make it clear to my rheumatologist and other medical providers that I am celiac? Or will they veto that due to negative endoscopy? Thanks again for the help!
    • Scott Adams
      If you look at the article that I shared you will notice that "The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease," so your results indicate that you very likely have celiac disease, especially if you also have symptoms while eating gluten that go away when you stop eating it (although many celiacs don't have obvious symptoms).
×
×
  • Create New...