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 Genetic Test- Negative Blood Work

jk624

Recommended Posts

jk624 Newbie
jk624
Posted

I recently had genetic testing and lab work for celiac from prometheus labs, ordered by my doctor. My doctor said I came back positive for having all the genes celiacs have but my blood work was negative. How much gluten do you have to eat to get positive results? I dont avoid it completely but I definitely eat a gluten restricted diet. What next? I have too many health issues and symptoms to just accept that i have inactive celiac genes. Ive had candida overgrowth and just got diagnosed with bacterial overgrowth. Should i request a biopsy or additional testing? Also do I need to have my 2 young children tested now? HELP!

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

Celiac.com Sponsor (A8-M):


Wolicki Enthusiast
Wolicki
Posted

OK, since you have the genes and symptoms, I would say you likely have it. The problem is that blood tests and biopsies can be false negative. The true test, IMHO is positive dietary response. You can have the biopsy, but remember that there are over 35 ft of intestine, and they only test 6 samples. So, it could be negative, too, even with Celiac. Or you could have gluten intolerance, which will never show up on a blood test or biopsy, but the symptoms are the same.

as for your kids, kids tests are notoriously inaccurate. Are they symptomatic? My 9 yr tested positive, but my 13 does not. Even though he vomits for most of the day after eating gluten.

I would suggest doing a strict gluten free trial, with a gluten free house to ensure you don't get cross contamination, for 3 months. If you have improved your symptoms you may have your answer. Then after 3 months you could challenge it.

After all I have learned, I don't think the official diagnosis is worth it, unless you live outside of the US where you get benefits. Too many people struggle for years with no diagnosis. And you don't need a diagnosis to try the diet to see if it works for you.

That's my two cents. And yes, I know that I am opinionated in this matter :D

DebbieM Rookie
DebbieM
Posted

I am somewhat in the same boat. I tested positive for genes and negative for blood work. I had been gluten free for 9mos so I did a 3 month gluten challenge in order to do a biopsy. The results of the biopsy were sort of inconclusive saying I showed signs of "suggestive early/mild celiac" and they want me to continue eating gluten for 3 more months and do biopsy again.

SO...my choices are 1. just go gluten free or 2. redo the biopsy

I am not at the place where many other seem to be able to accept that and just go gluten free w/out the diagnosis. I just REALLY, REALLY want to know for sure if I have it before going gluten free for the rest of my life. I am 100% happy to stop gluten, but I feel such a strong desire to have an official diagnosis.

AND..I have to think about my kids as well.

Good Luck.

Debbie

jk624 Newbie
jk624
Posted
  • Author

I am somewhat in the same boat. I tested positive for genes and negative for blood work. I had been gluten free for 9mos so I did a 3 month gluten challenge in order to do a biopsy. The results of the biopsy were sort of inconclusive saying I showed signs of "suggestive early/mild celiac" and they want me to continue eating gluten for 3 more months and do biopsy again.

SO...my choices are 1. just go gluten free or 2. redo the biopsy

I am not at the place where many other seem to be able to accept that and just go gluten free w/out the diagnosis. I just REALLY, REALLY want to know for sure if I have it before going gluten free for the rest of my life. I am 100% happy to stop gluten, but I feel such a strong desire to have an official diagnosis.

AND..I have to think about my kids as well.

Good Luck.

Debbie

Yea, i also feel i really want a definite diagnosis. I have been eating a "gluten restricted" diet for at least 2.5 years. I def don't eat an equivalent of 3-4 slices of bread a day! My doctor seems to think that having even a little gluten in your diet will yield a positive or at least slightly positive result. Im just NOT convinced, i still need more answers. I wonder if im eating enough gluten for a biospy to be positive. Im thinking of getting the entero lab stool test to get a diagnosis, anyone know if this is accurate?

Jestgar Rising Star
Jestgar
Posted

I recently had genetic testing and lab work for celiac from prometheus labs, ordered by my doctor. My doctor said I came back positive for having all the genes celiacs have but my blood work was negative. How much gluten do you have to eat to get positive results? I dont avoid it completely but I definitely eat a gluten restricted diet. What next? I have too many health issues and symptoms to just accept that i have inactive celiac genes. Ive had candida overgrowth and just got diagnosed with bacterial overgrowth. Should i request a biopsy or additional testing? Also do I need to have my 2 young children tested now? HELP!

There are no 'Celiac genes', only a subset of HLA haplotypes that are associated with Celiac - like blue eyes and blond hair are associated. You can have one without the other.

DebbieM Rookie
DebbieM
Posted

Yea, i also feel i really want a definite diagnosis. I have been eating a "gluten restricted" diet for at least 2.5 years. I def don't eat an equivalent of 3-4 slices of bread a day! My doctor seems to think that having even a little gluten in your diet will yield a positive or at least slightly positive result. Im just NOT convinced, i still need more answers. I wonder if im eating enough gluten for a biospy to be positive. Im thinking of getting the entero lab stool test to get a diagnosis, anyone know if this is accurate?

I was thinking of doing the Entero Lab too....wondering if that might be more info to help me put the pieces together!?!?

jk624 Newbie
jk624
Posted
  • Author

There are no 'Celiac genes', only a subset of HLA haplotypes that are associated with Celiac - like blue eyes and blond hair are associated. You can have one without the other.

yes but the test did not say i only had one or some of the genes, it said i had ALL the genes associated with celiacs- so either i have celiacs or i could DEFINITELY develop it in the future

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

Celiac.com Sponsor (A8-M):


k2626 Explorer
k2626
Posted

I just saw an expert GI who is also giving me this test due to yrs of gerd, and the past 2 yrs having neurpathy/neuro issues and past yr inflammation of pancreas. My other dr did not run the proper labs. Oy. Anyway, he said if my genetic tests come back POS but labs NEG he will do a biopsy of my stomach as it would be VERY likely I have it. Gluten does not always show in labs...

Archived

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

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


  • Member Statistics

    • Total Members
      130,083
    • Most Online (within 30 mins)
      7,748
    alanaalmond36
    Newest Member
    alanaalmond36
    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

    • Wheatwacked
      Should I ask for more testing? Celiac vs. Gluten Sensitivity

      By Wheatwacked · Posted

      It seems the "fad" diet is working for you.  
    • Mari
      Upset stomach

      By Mari · Posted

      Hi Vicky'  If you are hesitant to visit your medical provider and if this discomfort persists you may choose to do that. I do have some suggestions and how ai have delt with digestive problems not caused by gluten but likely a result of having the autoimmune reaction in my small intestine for all the years before going gluten free. Before I stopped eating gluten I had a leaky gut. The gluten inflammatory reaction let other food molecules get just far enough into the wall of the small intestine to be recognized as invaders so I began reacting to them at a very low level, not very noticeable.  When you eat a meal it goes into the stomach and is liquified in a highly acid environment. This may take up to 2 hours. This acidic fluid is then  released into the beginning of the small intestine where, as it is released, bile is squirted into it . The bile is very alkaline so it neutralized the acid.  Without that bile being available the liquid that is released from the stomach may remail too acid and cause discomfort. Many people use antacids to stop the burning but I don't do that because it did not get at the real cause. \\I wrote that I had developed other food intolerances or allergies that weren't noticeable when I was eating gluten foods. Except for hot peppers and all of the nightshade family.  I have mild reaction to other foods. Those reactions cause enough inflammation in my digestive system that impeded food from passing down the small intestine so that when the food was released from the stomach it had no place to go because the small intestine was still having difficulty pushing it along. When the stomach can't release the acid liquidified food down it tends to be forced up resulting in acid reflux.  I learned to do gentle massages of my abdomen and over the last 18 years eliminated many foods from my diet. What I did not realize, although many celias have reported this, is that once a person reacts to a food even tiny amounts of the food I have eliminated, will cause inflammation in my stomach and upper intestine I was getting these very small amount of reaction causing foods in supplements, by cross contamination  . Now if soy or corn, to name just 2, is on a label I don't buy it. Another suggestion is to drink enough water to keep yourself hylrated. That information is available online and depends on you height and weight. I am not a medical practitioner so what I wrote is only from my own experience and what I think about the causes of some of my digestive problems. 
    • Wheatwacked
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By Wheatwacked · Posted

      Hi @Stephanie Wakeman, Get your vitamind D blood level checked and supplement to raise to around 80 ng/dl or 200 nmol/L.  This is the natural upper limit and provides the best immune system. Vitamin D plays a role in regulating the immune system, and low levels may impair the immune system's ability to control allergic responses.  Vitamin D deficiency may be linked to an increased risk of developing allergies and experiencing more severe allergic reactions.  Vitamin D is one of many vitamin deficiencies caused by small intestine damage so unless you get enough sunlight or taking large doses of vitamin D, you will be deficient.      
    • RMJ
      Damage after 13 years gluten free

      By RMJ · Posted

      I’m frustrated with celiac disease and my current gastroenterologist (GI). I’ve been gluten free for almost 13 years, with normal antibodies for almost 8 years - except for one excursion of my DGP IgA 5 years ago which returned to normal when I changed brands of gluten free flour. All 4 celiac antibodies were positive 13 years ago but I didn’t have an endoscopy for reasons unrelated to celiac disease.  I did have one 9 years ago. The DGP IgA was still slightly elevated, GI saw some blunted villi visually, biopsy showed “patchy mild increase in intraepithelial lymphocytes” and “focal mild villous blunting” (Marsh 3A). For the past few years I’ve had intermittent trouble with nausea and stomach pain so my current GI suggested doing a repeat endoscopy. He saw nothing visually, but biopsy showed “focal mild intraepithelial lymphocytosis” and “minimal focal villous blunting”.  All I got was a letter from the GI and his nurse that said there were mild changes consistent with celiac disease. I sent a message to the doctor asking where I go from here but just got an answer from a nurse saying it is better, less damage than 2016 so keep following the gluten free diet. So focal is better than patchy for increased lymphocytes and minimal focal is better than focal mild villi blunting? I feel this biopsy result after 13 years deserves some discussion, but this doctor never answers messages, his nurses just give out canned responses, it takes 6 months to get an appointment, and his only suggestion for nausea and pain was more soluble fiber. I’ve read that adults may not heal completely on a gluten free diet but with normal antibodies for years I was not expecting this result. I have made an appointment with a different GI who hopefully is more communicative. Rant over. Thanks for reading.
    • Pablohoyasaxa
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By Pablohoyasaxa · Posted

      I was diagnosed with gluten sensitivity and a wheat allergy as a child in the early 1960s, . which I inherited from my father's DNA. My mom tried the best she could with both of us, but in those times health and allergies were kind of brushed aside.  I grew out of it, or so we thought, but the rashes reared their ugly heads while I was in college. Keg parties (wheat & gluten in beer and youthful reckess eating led to an outbreak. To the point, I am a 65 year old and now living with full blown celiac with dermatitis herpetiformis blisters that are just beginning to receed after being gluten-free for over 2 years at least. The lesions are so unsightly that I need to stay covered. Ive been living in South Florida and would love to wear shorts but people see the sores and thing I am a leper. Ive lost a lot of weigh from  stomach cramps and frequent bowel movements. Will this ever end!
×
×
  • Create New...