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Prometheus Lab Test


mommyof2

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mommyof2 Newbie

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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KaitiUSA Enthusiast

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. :)

mommida Enthusiast

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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    • trents
      @cristiana, I'm thinking the intensity of our response to the same amount of gluten can vary from time to time. Our bodies are a dynamic entity. 
    • Scott Adams
      I'm going to try Jersey Mike's soon--we have one nearby. Thanks for sharing!
    • cristiana
      Hi @trents Two things can happen:  1/ For a very small gluten hit, I will get a slightly sore stomach for a few days, maybe a day or two following the glutening, and (TMI warning) maybe slightly loose BMs with mucus  for a couple of days.  2/ For a substantial glutening, and thankfully it's only happened once in recent years,  I get bad chills, followed by vomiting, and my heartbeat is all over the place and I can hardly stand.  It's pretty extreme.  That happens within about 2 hours of eating the gluten.  I might feel slightly dizzy for a couple of days after the glutening episode. Interestingly I've just been out to a cafe which hitherto has made a big thing about how their french fries are cooked in a separate fryer.  I shared some with a friend and they were served with chilli sauce, jalapenos, cheddar cheese and fried onions.  Definitely not health food!  Anyway,  I'd eaten half when I realised I'd not checked the menu to ensure that this dish is still gluten-free - and it turns out it isn't!!!  They've changed the ingredients and the fried onions are now cooked with wheat.   I came home expecting to feel dreadful as I had no idea how much gluten I have consumed but so far if anything I feel just little queasy.  I think I'd have thrown up by now had there been a lot of gluten in the onions.  
    • trents
      It might be wise to start him on small amounts and work up to 10g. Monitor how he reacts. Some people simply cannot complete the gluten challenge because it makes them too ill. By the way, you can buy powdered gluten in health food stores, at least here in the states you can. With a food scale, it would be easy to measure the amount being consumed in a day. I'm not sure what the intensity of reaction to gluten tells you about what's actually going on with regard to celiac disease. I mean there are some celiacs like me who don't seem to react to minor exposure amounts but who get violently ill with larger exposures. Then there are celiacs who get some kind of reaction to even the tiniest amount of exposure but don't necessarily get violently ill. And how the reaction manifests itself is very different for different people. Some, like me, experience emesis and diarrhea. Others just get brain fog. Others get joint pain. It's all over the map.
    • melthebell
      That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\
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