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

Question About Enterolab Results


amberleigh

Recommended Posts

amberleigh Contributor

Here's what my results said...

HLA gene analysis reveals that you have two copies of the main genes that predispose to gluten sensitivity and celiac sprue, HLA-DQ2 or HLA-DQ8. Having two copies of a gluten sensitive or celiac gene means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe.

So my question is...does this mean that ALL OF MY CHILDREN WILL HAVE CELIAC? Do you have it if you only have 1 gene? Or are you considered a "carrier"? How does it work?

And...my parents have never been dx'd or had problems. So does this mean that they both have it as well?

And...the funny thing is that I've only gotten really sick twice in my life. Once was 6 years ago and they told me I had IBS, then I was "fine" for 6 years, had my 3rd baby and got sick again. Now they say I have Celiac. How can I be more sensitive to it with 2 genes if I only had 2 "flare ups"? I know there are some people on this board that have suffered for years.


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



Celiac.com Sponsor (A8-M):



gfpaperdoll Rookie

Amber, you are only 29, imagine if you were 60 - I know unbelievable :) & from the age of 29 on your life was a downward spiral - if you are lucky enough to actually survive, before they find out what is wrong with you. I am not as lucky as you because I am double DQ1 & I have suffered with this since I was a baby - but no one ever figured it out. then 37 years ago I gave birth to a son that was born with it, & his son was born with it 11 years ago. the 11 year old is failure to thrive & is also double DQ1. one of the genes I passed to my son, he passed to his son, & the grandchild got another one from his mother. & it was only 3 1/2 years ago that I found out about celiac - after thinking I had a wheat allergy for 10 years before that...

Just having the gene or genes does not mean that you have celiac or gluten intolerance, just that it is a possibility. You can also have total villi atrophy & no symptoms. You can have villi atrophy & have no gastro symptoms, but maybe you suffer from migraines, depression, asthma, diabetes, throid disease, cancer, on & on... or you can have partial villi atrophy & be bedridden well on your way to worse... or you could be bedridden or very ill & have no villi atrophy. It is any wonder that the docs cannot diagnose this stuff???...

here is how the genes work. If you have two genes, you got one from your father & one from your mother. not that they had the disease but they had the genes at least. It is my personal opinion that if you have the genes you have a problem with gluten & I think that is the stand that Dr. Fine takes also. anyway, back to the genes. so you have two. each one of your children will get one of your genes. If you only have one gene, each one of your children have a 50% chance of inheriting that gene.

hathor Contributor

Having the gene doesn't mean you have the disease. It merely means that you might get it. As the information from Enterolab said, there is a "predisposition." However, a rather substantial proportion of the population has "celiac genes" and doesn't have, and won't ever get, celiac. There may be other genes involved that haven't been identified and/or the need of some triggering event.

Actually, about everyone in the US has either celiac genes or gluten intolerant genes, as defined by Enterolab. Only those with DQ4, found in those of Asian heritage, seem to be in a different category.

I think the antibody & malabsorption scores are of FAR more importance than the genes you have.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,243
    • Most Online (within 30 mins)
      7,748

    Maya Baum
    Newest Member
    Maya Baum
    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

    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • 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.