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Genetic Testing

nothungry

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nothungry Contributor
nothungry
Posted

I want to have my children genetically tested for celiac disease. I don't really know the first thing about it and I would appreciate any information anybody has to offer me...Is this done in a doctor's office, a laboratory or with a home kit? How do I go about finding out of my insurance company will pay for it? Has anybody else had their insurance company cover the costs?

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Jnkmnky Collaborator
Jnkmnky
Posted
I want to have my children genetically tested for celiac disease. I don't really know the first thing about it and I would appreciate any information anybody has to offer me...Is this done in a doctor's office, a laboratory or with a home kit? How do I go about finding out of my insurance company will pay for it? Has anybody else had their insurance company cover the costs?

Use Prometheus Labs on the west coast or Enterolab on the east coast. I used Prometheus Labs. My insurance covered most of it. It was $300 per test. I got the test kit, took it to my dr who drew the blood and the kit is picked up by Prometheus labs for the running of the test.

nothungry Contributor
nothungry
Posted
  • Author

Do I mail order these test kits?

Jnkmnky Collaborator
Jnkmnky
Posted
Do I mail order these test kits?

I picked ours up at the R.O.C.K. walk last May. I think you can order them from the labs. Google their names and you'll get a link to them. They give out the kits for free as far as I know... it's the testing that they charge for! :)

nothungry Contributor
nothungry
Posted
  • Author

Thanks for the information. I tried to call my insurance company. They said that my doctor has to call their resource coordination department and convince them that my kids are at high risk, then they will consider paying for it. How did your insurance company handle it?

Jnkmnky Collaborator
Jnkmnky
Posted
Thanks for the information. I tried to call my insurance company. They said that my doctor has to call their resource coordination department and convince them that my kids are at high risk, then they will consider paying for it. How did your insurance company handle it?

Well, we're military. It's different for us. I picked up the kits, took them to our PCP *civilian, not military* and said I want the tests done. She did them, sent them off and I waited to see if they'd get paid for. I got a small bill later. I generally do whatever I want medically and they always cover it. I'm forunate that way. I realize it's difficult for those not in the military. Good luck.

I want add that it hasn't always been so easy medically speaking, in the military. Only in the last 4 years has it gotten to the point where they're more agreeable. Frankly, military medicine was, imo, dangerous prior to that. We had the WORST care. With the wars and the farming out of medical care, we're getting so much better care. I and my kids see civilian doctors and I can't tell you how great that is in just words. Did anyone see that 20/20 show a few years back where the head of the Army's OBGYN got out of the army and was delivering pizza for a living??? I had "drs" who couldn't get a job delivering pizza after they got out. <_<

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      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
      Accuracy of testing concerns

      By trents · Posted

      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
      Accuracy of testing concerns

      By McKinleyWY · Posted

      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
      A little about me and my celiac disease

      By trents · Posted

      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
      Gluten Free Coffee

      By Peace lily · Posted

      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.
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