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Prometheus Lab Test
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Hi folks, Newbie here - I have visited the board for info but this is my first time posting. I have been followed by a GI for over a year for reflux disease and a swallowing problem. Once we got those symptoms improved I brought up some other digestive problems I had been having with him and had tried gluten-free for a few weeks and had some improvement. He ordered blood tests - one out of the three were positive and did a biopsy with my last endo which was negative. At my last GI visit I told him I was staying mostly gluten-free because I felt better but when I cheat (which I seem to do at least once a week) I can have problems for several days. This time around he ordered the tests by Prometheus Labs which include a 5 marker serology with genetics reflex. He said I didn't have to be consuming gluten because the genetic marker will not be affected by that. I am wondering if it will be a more conclusive test if I am actually eating more gluten. The original blood tests may have been negative because I was mostly gluten free at the time - I had a sandwich the day before thinking I should eat some in case he did the blood test. So the question is should I be eating gluten and for how long before the test? I just took the lab referral home with me so I could post and get some input before I go. 2 of my mom's sister's had celiac's and I think my mom does too so the genetic test will be helpful to convince my mom to be tested.

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Hi Im Kaiti and I am 17 and I was actually just diagnosed with Celiac this year. When I first got the test done he said to eat the foods I would normally eat and dont change it because that will affect the outcome of the test. I ate wheat and foods containing gluten for about a week and then after the testing I went off it to make sure. If you are already cheating once a week you will have wheat already in your system so you would be fine to go get your testing done now if you wanted. It does not get out of your system for a while so I think you are fine to get it done now if you need any more info id be happy to help the best I can. :)

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You don't have to consume gluten for the genetic test.

My daughter was diagnosed through this test. My test was negative. Do you have a skin rash of any kind as a symptom of gluten consumption? The doctor is still checking if dermititus herpetiformis is detectable through the gene test.

( It seems the test was supposed to be at least 90% accurate, but now they are saying it can have a 30% failure rate. If that makes sense to you can you explain that to me?)

Laura

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    • You are right, the tests could be invalid.   All the celiac tests require you to be on a gluten-containing diet.  It is up to you to decide if you want to go gluten free.  You can do it.  Believe me, I know.  Hubby is not officially diagnosed.  He went gluten-free 15 years ago, based on the rather poor advice from my allergist and his GP.  It worked though.  But he would be the first to tell you that I have had way more support in terms of family and medical.    We think he has it.  Both of our families are riddled with autoimmine disorders.  I am the first to be diagnosed.   My Aunt went gluten free per the advice of her Chiropractor.  Her other doctors never suspected celiac disease.  The diet obviously worked for her.  Her daughter (my cousin) is a nurse.  She had an endoscopy but they did not check for celiac disease.  She chose to go gluten-free too since it worked for her mom.  Both will not do a gluten challenge.  However, my diagnosis has helped them get proper medical treatment.  My Aunt is very active in a celiac support group.    Now everyone in my family knows about celiac disease.  My own niece was just diagnosed with Crohn's, but her GI did test and will continue to test her for celiac disease.  You can develop additional autoimmune disorders at any time.   So far, a few other members have been tested.  No one else had had a celiac disease diagnosis yet.  Time will tell.  If I can save someone from the misery of struggling to get a diagnosis, then I can feel good.   Now, an official diagnosis will help you adhere to the diet .  You can get follow-up care.  Get checked for other things like SIBO, H. Pylori and cancer.  But ultimately, it is up to you.   Whatever you decided to do, please consider a family health history chart.  You might someday help a grandchild.   The stool tests?  In all my research, leading celiac experts do not recommend them.  http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/  
    • The procedure is a breeze. You will go in, be sedated and go to sleep for a short nap and then it's over. Some people will have a bit of a sore throat but not everyone does. For me the hardest part of the endo was not being able to drink coffee when I got up. You seem to have been back on gluten for long enough to have the test but as CLady said there is a good chance your blood work may be negative. In your case you may want to continue eating gluten after the biopsy at least until you get your blood results. If they are negative consider going a bit longer and getting them redone.
    • I think the gene tests are accurate.  Not sure if thier interpretation of them is.   If you actually think have Celiac, you need to know that.  You  need to know how careful you must be.  You need a diagnosis to get gluten-free food in hospitals or nursing homes (if you can find one that does gluten-free food).  Because thsese "stool tests" are not medically accepted, it is unlikely that a real medical facility will consider you to have Celiac.   http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Why would your doctor order an endoscopy and check for celiac disease, but not order a celiac panel?  Had you been gluten free already?  
    • Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...
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