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

Positive Abs, Negative Genetics


slf8

Recommended Posts

slf8 Newbie

Hello,

 

I was diagnosed with ulcerative proctitis in 2003 while pregnant with my third daughter. In 2008 I had ulcers further up in the colon. My colitis presentation is not "typical" however, in that the inflammation is not continuous but rather spotty, but it is not all the way through the mucosa like in Crohn's. I do, however have all of the typical IBD symptoms (pain, blood, mucous, D, cramps), off and on, mild to moderate, thankfully never bad enough to land me in the hospital.

 

I switched gastroenterologists last year and he suspected that perhaps I had undiagnosed celiac disease which had contributed to my IBD. I had a celiac blood panel and these were the results:

 

Gliadin IgG 18.99 U/mL Positive

Gliadin IgA 11.29 U/mL Negative

TTG IgG      20.98 U/mL Positive

Total IgA    265 mg/dL

 

He did an endoscopy, though visual inspection saw some mild blunting of the villi, the histology was negative for celiac.

 

After being on a gluten-free diet for two months, I had another test:

TTG IgA 8.44 Negative

 

I also had the genetic test done and I was NEGATIVE for both DQ2 and DQ8.

 

I understand that often the blood test can be false negative when the genetics say predisposed to celiac. I think my case is perhaps unusual that I am borderline positive on the blood test, but negative genetically. Does this mean I am non-celiac gluten intolerant? And what does that even mean? I have been reading about "leaky gut". Perhaps if tested I would have antibodies to many other foods as well.

 

As a result of the negative genetic test, I went back on gluten. I actually felt great over the summer but now I am in a flare again along with quite a bit of esophagitis so I am wondering if that was such a great idea.

 

Thanks for your time.


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

Welcome to the board.  :)

 

I don't know much about genetic testing, never having looked into it myself, but I do know that there are a few people on these boards who have celiac and did not test positive for the "usual" genetic tests. I believe there are other genes that are linked to celiac, but I can not remember what they are.

 

Two positive blood tests is a pretty sure sign that you have celiac disease. So is the villi blunting (others around here will know more about this)... And so is the fact that your ttg test went down after being gluten-free. :( I would say it looks a lot like celiac disease.

 

If you want to be more sure, why not re-test yourceliac blood tests? You've been on gluten for some time, and are having symptoms again, so you might as well get it checked and see if your auto-antibody levels have gone up again.... and unfortunately I bet they have.

 

If you decide to skip re-testing, I would advise you to go gluten-free again in the very least. If your symptoms improve again (and give it a few months) then you have your answer.

 

Good luck in whatever you decide to do.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,524
    • Most Online (within 30 mins)
      7,748

    cjv123
    Newest Member
    cjv123
    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

    • Russ H
      Although sensitivity to gluten varies between individuals, multiple research studies suggest that consuming up to 10 mg of gluten a day is safe for most people with coeliac disease. Wheat flour contains approximately 10% gluten by weight, so this is equivalent to 100 mg of flour, or a piece of wheat bread the size of a small pea. There is a case report of farmers with coeliac disease developing symptoms from inhaling gluten containing dust from cattle feed but that is an extreme example and they were exposed to very high concentrations of airborne gluten over a long period of time. In a domestic situation, unless someone is making dough and putting a lot fo flour into the air, I don't think you will get significant airborne exposure. The thing to watch out for is making sure work surfaces, cutlery and utensils are clean. If you have to share a toaster, get some toasting pouches.
    • Fabrizio
      So? What do you think it will go ahead? Did you partecipate to this trial? what's the result for yuo? Thanks a lot for your answers!
    • trents
      You might look into wearing an N95 mask when others are creating baked goods with wheat flour in your environment.
    • Rebeccaj
      @trents thank you for that information. My parents feel that cooking flour in toaster isn't a thing as its already cooked product before made? but Airbourne particles is my fear. Like I have had symptoms from 6 meters away had to leave massive migraine. 
    • knitty kitty
      Yes, except for the most sensitive, cross contamination from airborne gluten should be minimal. Highly sensitive people may have nutritional deficiencies.  Many times their bodies are in a highly inflamed state from Celiac, with high levels of histamine and homocysteine.  Vitamins are needed to break down histamine released from immune cells like mast cells that get over stimulated and produce histamine at the least provocation as part of the immune response to gluten. This can last even after gluten exposure is ended.  Thiamine supplementation helps calm the mast cells.  Vitamin D helps calm the immune system.  Other B vitamins and minerals are needed to correct the nutritional deficiencies that developed while the villi were damaged and not able to absorb nutrients.  The villi need vitamins and minerals to repair themselves and grow new villi. Focus on eating a nutritional dense, low inflammation diet, like the Autoimmune Protocol Diet, and supplementing to correct dietary deficiencies.  Once your body has the vitamins and minerals needed, the body can begin healing itself.  You can have nutritional deficiencies even if blood tests say you have "normal" blood levels of vitamins.  Blood is a transport system carrying vitamins from the digestive system to organs and tissues.  Vitamins are used inside cells where they cannot be measured.   Please discuss with your doctor and dietician supplementing vitamins and minerals while trying to heal.  
×
×
  • Create New...