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

HELP WITH HLA RESULTS

adobs80

Recommended Posts

adobs80 Rookie
adobs80
Posted

I am in Pittsburgh and have been to multiple doctors for stomach issues. I had an endoscopy that showed "villous atrophy indicative of celiac sprue". I had IgG and IgA testing- both came back negative. I had genetic testing and the doctor says it is also negative, but the results say I am positive for:

DQB1*03

DQB1*06

DQA1*01

DQA1*03

I have googled and googled with no luck. I guess I have a few questions. Can everything be negative and I still have Celiac disease? Or what else could cause the damage to my intestines? Does anyone know enough about genetics to interpret these positives? I know I shouldn't be seeking medical advice on a forum, but my doctors have been useless. Any advice is appreciated. Should I keep up the hunt for a doctor or is this a true negative?

 

Thanks!
 

 

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I can't answer about the HLA tests but since you did have villi destruction have you tried the diet strictly for a while? Some folks don't show up positive on blood tests and there are some more rare genes that are also associated with celiac. I can't say for certain that one of the ones you are positive for is one of them or not so I will leave that to someone more familiar with that subject.

adobs80 Rookie
adobs80
Posted
  • Author

I have been gluten-free since June and do feel better. The doctor just keeps saying I need to stop and eat more fiber since my tests are negative. My joints don't hurt anymore so I am very hesitant to go back to that pain. I think I will just have to try another doctor. This is a very frustrating process. Thanks for the response!

cyclinglady Grand Master
cyclinglady
Posted

Here is my opinion (lame that it may be).  Years ago, doctors thought celiac disease occurred only in children (signs of malnourishment/extended bellies) and that you had to be of European decent.  Even when Dr. Fasano came to the US, there were very few people who being diagnosed with celiac disease.  He and other researchers discovered that celiacs can be large or small, old or young, European decent or not, and that the disease was systemic with over 200 possible symptoms or none at all.  What I like about him is that each time he lectures, he points out that the we still do not know everything about the gut.  

Are your genes affliated with celiac disease?  I do not know and I honestly do not research it because I am already diagnosed.  Not to mention that gene knowledge is limited.   Maybe you are like me and you test weird.  I only test positive on the DGP IgA.  Maybe you are seronegative and that happens and the percentage is not tiny.  Does your GI even keep up with the latest celiac research?  

Okay, I am ranting, but if the diet is helping and you had villi damage and you were not in the subtropics, gulped down massive amounts of ibuprofen, have a severe milk or food protein intolerance (usually occurs in babies), chances are you have celiac disease.  The pathologist thinks so!  

I would err on the side of staying healthy.  I am diagnosed (five years), but my hubby is not.  He went gluten free 17 years ago per the poor advice of his GP and my allergist.  It worked though.  He got well.  Will he do a challenge?  No way.  I do not blame him.  Does he have celiac disease?  Who else would stay on a gluten free diet if they did not think it was working?  

It might help you to get another opinion.  Keep and maintain all your medical records.  It is your right.  But the bottom line is your opinion.  You know that your joint pain is gone and more fiber is not going to cure that!  

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,112
    • Most Online (within 30 mins)
      7,748
    Donna J G
    Newest Member
    Donna J G
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • jenniber
      Celiac support is hard to find

      By jenniber · Posted

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      need help understanding testing result for Naked Nutrition Creatine please

      By RMJ · Posted

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @cristiana,  I react the same way.  Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies.  This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.   We have opioid receptors throughout our bodies including lots in the digestive tract. Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button! The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.   Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards.  The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.   Some people in remission report being able to consume gluten again without consequence.  Another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.  
    • TheDHhurts
      need help understanding testing result for Naked Nutrition Creatine please

      By TheDHhurts · Posted

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
    • cristiana
      Insomnia help

      By cristiana · Posted

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly.  I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it! To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.  
×
×
  • 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.