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Prometheus Celiac Serology

eddieisagirl

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eddieisagirl Newbie
eddieisagirl
Posted

Hi all! I'm new and would appreciate all your thoughts. Gastro dr sent me for cbc, crp and tsh blood tests and I'm to go for prometheus celiac serology test - is this a good, reliable indicator of celiac disease (the nurse warned me of which lab to use because she said lots of them "mess up" the test ?) How long until I get results and can be sure or not if this is my problem? Is there add'l testing after this test? Is heartburn a symptom? I feel like I've swallowed razor blades sometimes. Is swelling/bloating a symptom of celiac (abdomen, ankles, knees)? I look pregnant at times and the aching pain in back, under my ribs, middle and lower abdomen wakes me at night sometimes. This is going to sound weird, but when my abdomen is swollen, I can lay on my back and feel my intestines - hard and swollen, sticking out - it's painful! I think it's gas (which is way more than normal), altho I'm constipated often, taking laxatives (rx'd by dr, but which don't work so well all the time) - that doesn't sound like celiac from what I'm reading. My family does have a history of auto immune disease (diabetes and thyroid), but I personally do not. Can it really be something as seemingly simple as stress or a virus that can trigger this disease? I have been under crazy stress (divorce, raising my kid btn the x and I, other relationship issues, financial stresses.) Some things to consider: I have had eating disorder issues on and off for a long time (15+ yrs - binging, purging, restricting) but have not binged purged in yrs. My diet for the past several years is kind of unusual - mostly veggies, some fruit, no meat, no dairy, some starches. Sounds healthy, however, I love my condiments, vinegar, mustards, dressings and sauces (mostly low and fat free, but not natural, probably just full of preservatives). My weaknesses, in which I indulge often, include pretzels, beer, sugary snacks (like fruit jellies and twizzlers). I have NO energy, at all. My poor kid is suffering because his mom just can't keep up, my body feels old, I feel like I'm 60! All of this is not helping with my lack of a social life, all of which adds up to depression. Does this sound like celiac? Can you tell me about the testing and/or any other things you may know of that this may be (if not celiac?) Thanks so much in advance. I feel like I'm going crazy and any help is so appreciated!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. You do sound like you could be one of us. Yes celiac does require a trigger and emotional as well as physical stress like an illness or in women childbirth can trigger it.

I can't answer about the particular lab your tests are going to but there is a chance of a false negative with blood screening. Even if tests are negative after all testing is done, including the endoscopsy if your doctors do one as a part of the diagnosis, then go ahead and give the diet a good try.

eddieisagirl Newbie
eddieisagirl
Posted
  • Author

Thanks for the reply. I've been reading more and see how frustrating this whole process can be so I appreciate your advise. In my reading - holy cow - I can't believe some of the things I've been dealing with that I have assumed were unrelated to my digestive problems could actually be related! Panic attacks, anxiety, fatigue, brain fog - I assumed these were due to not getting enough sleep and stress - and they still very well could be, but I'd not considered the possibility of a link. My diet has become so limited because even the tiniest amount of anything seems to cause me to bloat up and stomach pain. This is odd - I'd run out of a probiotic supplement and B vitamins I was taking and I was nervous that not having these would make me feel even worse. I went about a week without either, and when I began taking them the other day, I started feeling bad again - could that be related - maybe they contain gluten? A few days later, I also indulged in one of my favorites - pretzels and beer, so that could be it too? I'm going for the blood test on Tuesday. I almost can't wait to begin to cut gluten out of my life so I can maybe begin to feel human again. I so appreciate all the information on this website and in this forum!

gfb1 Rookie
gfb1
Posted
[snip]I'm to go for prometheus celiac serology test - is this a good, reliable indicator of celiac disease (the nurse warned me of which lab to use because she said lots of them "mess up" the test ?) [snip]

prometheus seems to put a lot of faith in their genetic testing... from their brochure:

Genetic testing detects genes specific to celiac

disease (DQ2/DQ8). The absence of these

genes may allow your physician to rule out

celiac disease for life.

i suppose using the words 'may allow' give them an out; but, the DQ-haplotype analyses are not absolutely predictive.

their serology tests generally includes:

o Anti-gliadin IgG ELISA: <3.5 EU/mL

o Anti-gliadin IgA ELISA: <4.0 EU/mL

o Anti-human tTG IgA ELISA: <3.0EU/mL

o Anti-endomysial(EMA) IgA IFA: Negative

o Total serum IgA: < 3 years: 8-220 mg/dL ; 3-13 years: 41-395 mg/dL ; >13 years: 44-441 mg/dL

i don't think their error rate is any better or worse than any other clinical lab.

lizard00 Enthusiast
lizard00
Posted
their serology tests generally includes:

o Anti-gliadin IgG ELISA: <3.5 EU/mL

o Anti-gliadin IgA ELISA: <4.0 EU/mL

o Anti-human tTG IgA ELISA: <3.0EU/mL

o Anti-endomysial(EMA) IgA IFA: Negative

o Total serum IgA: < 3 years: 8-220 mg/dL ; 3-13 years: 41-395 mg/dL ; >13 years: 44-441 mg/dL

i don't think their error rate is any better or worse than any other clinical lab.

It's probably not. Their advantage is that the standard serology tests are the complete panel; many doctors do not order the complete celiac panel. And it doesn't hurt that celiac testing is one of the areas they have 'specialized' in.

I had my genetic testing done through Prometheus, and their results just give you a risk factor, obviously it cannot diagnose. If you come back negative for both of the two genetic markers they are looking for, your results page says that you have a very low chance, but it's not 0%.

larry mac Enthusiast
larry mac
Posted

My doctor ordered one of Prometheus's other screening panels. I think it included Crohn's, etc. The results indicated a possible Celiac risk. He then performed an endoscopy which positively confirmed it. I think the test was $450. Money well spent IMO. He was the third doctor I tried. The first two knew nothing about nothing.

best regards, lm

eddieisagirl Newbie
eddieisagirl
Posted
  • Author
It's probably not. Their advantage is that the standard serology tests are the complete panel; many doctors do not order the complete celiac panel. And it doesn't hurt that celiac testing is one of the areas they have 'specialized' in.

I had my genetic testing done through Prometheus, and their results just give you a risk factor, obviously it cannot diagnose. If you come back negative for both of the two genetic markers they are looking for, your results page says that you have a very low chance, but it's not 0%.

I'm replying to this one, but thank all of you for your replies - they are really helping me understand this test and to manage my expectations. So this is not the end, this could be the first of a few more tests to positive celiac or possibly rule it out. And thanks for pointing out the "outs" (may be, less likely, low chance, etc.)

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ravenwoodglass Mentor
ravenwoodglass
Posted

One last thing on the genetic testing. In the US there are only two out of 9 celiac related genes that are tested for. While the majority of celiacs do have DQ2 or DQ8 there are celiacs who carry genes that are recognized in other countries but not here. The genetic tests are one of the tools for diagnosis but they can not for sure tell you that you do or do not have the disorder.

OptimisticMom42 Apprentice
OptimisticMom42
Posted
altho I'm constipated often, taking laxatives (rx'd by dr, but which don't work so well all the time) - that doesn't sound like celiac from what I'm reading.

Constipation is common in celiacs. Laxatives don't work for me. I use the diet, juices and magnesium supplements.

Can it really be something as seemingly simple as stress or a virus that can trigger this disease?

My first round of celiacs was just after my divorce. I went undiagnosed. I restricted my eating enough that I "got better" for a couple years. The second round started when my oldest son was jailed and diagnosed with bi-polar disorder.

Some things to consider: I have had eating disorder issues on and off for a long time (15+ yrs - binging, purging, restricting) but have not binged purged in yrs.

Many of us have developed weird eating habits while trying to adapt to our symptoms.

include pretzels, beer

Pretzels and beer would make me really sick. :(

Does this sound like celiac? Could be.

Can you tell me about the testing and/or any other things you may know of that this may be (if not celiac?)

I'm not a fan of the tests. They are expensive and frequently wrong. The only way to know is to go gluten free and see if it helps. .

eddieisagirl Newbie
eddieisagirl
Posted
  • Author

Could've been the pretzels and beer are what made me feel so crappy the past week, I'm just now feeling better today.

I went for the Prometheus test today and the dr should have results next week. I'll keep what y'all said in mind when I do get the results.

I did get my other results in, from the lab so they've not been read by the dr yet. It says my rbc is low (hmoglobin and hematocrit low) but mcv and mch are high. Everything else is in the normal range. So I think this means I'm anemic, which would explain why I am so weak and fatigued. Not sure if or how this relates to celiac - looks like I have some reading to do. Thanks again, really, you guys are so helpful!

  • 2 weeks later...
eddieisagirl Newbie
eddieisagirl
Posted
  • Author

So the dr didn't have results as of Friday. How long do the results usually take? With all the reading I decided to try to watch for any reactions. I have cut a lot out of my diet, basically been eating fruit and lettuces and stopped vitamins, supplements, laxatives and I felt so much better. End of this week I made a broccli and spinach dish (basically, just some canola oil, balsamic vinegar, pepper and garlic) and my stomach began to swell this moring. I had apples, lettuce and more broccli dish during the day and began to feel worse, in a lot of pain. Now I'm wondering if maybe it's the balsamic vinegar? What else could it be? The only thing I've done different if eat the broccli dish.

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