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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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    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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