Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Prometheus Labs Vs Enterolab For Genetic Testing

Guest cassidy

By Guest cassidy
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

Recommended Posts

Guest cassidy
Guest cassidy
Posted

I don't know if I have celiac or gluten intolerance but I know I have some genetic problem with gluten because my mom has it to. I'm pregnant and want genetic testing on my baby on the off chance he has no genes and I can relax and not worry about him developing my problem.

I know Enterolab and Prometheus do genetic testing. I looked at the Prometheus website and it looked like they only tested for celiac genes, with no mention of gluten intolerant genes. I think Enterolab tests for both. I never had any of this done on me, so I'm not sure that I have it right.

So, since I don't know what I have, does it make sense to go with Enterolab so they can check for both, or can Prometheus check for both as well?

Any age limits on this? Can you do it on a newborn?

Thanks

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted

Enterolab is the only lab who tests for "sensitivity" genes. If you get tested for Celiac genes using Prometheus....and dont have a Celiac gene.....then you can be 100% positive that you *do* have sensitivity genes.

I would go for whichever test is more affordable for you. You are *guaranteed* to be positive either way with Enterolab because basically the entire population carries these genes in some combination or another. In my opinion the "sensitivity" genes dont really tell us much.....unless you are of Asian decent you will have either sensitivity genes, or celiac genes...or one of each.

If you do not have a Celiac gene.....your baby could still have a gene from your hubby.

The "sensitivity" genes arent really diagnostic of anything. Like I said, if you dont have either of the Celiac genes you're guaranteed to have 2 "sensitivity" genes. You can take it for what its worth. They are not recognized by any lab other than Enterolab.

I would assume that even if you dont have Celiac genes and the gluten-free diet is beneficial to your health you would continue with it regardless. As far as finding out the genetics to see if your baby may develop Celiac...you can find this out with either lab.

The test is a "cheek swab" so it can be done at any age.

larry mac Enthusiast
larry mac
Posted
.......

The test is a "cheek swab" so it can be done at any age.

Rachel,

I had blood drawn & sent to Prometheus. I don't have it at the moment, but I think it was:

Celiac Serology:

5-marker serology panel (Anti-human tissue transglutaminase IgA, Anti-endomysial IgA, Total Serum IgA, Anti-gliadin IgA, Anti-gliadin IgG).

And the Crohn's disease test also. In all, it was about $425. I'm not sure, but I don't think we ever did the genetic testing.

best regards, lm

Open Original Shared Link

Guest cassidy
Guest cassidy
Posted

So, if you will either have celiac genes or gluten sensitivity genes, then what is the point of genetic testing? I was hoping that they was an option where you had neither gene.

Since both are treated the same and if my son ever had symptoms I would put him on a gluten-free diet and not go through testing anyway, I guess it really doesn't matter what genes he has.

Thanks for clearing things up.

Rachel--24 Collaborator
Rachel--24
Posted
So, if you will either have celiac genes or gluten sensitivity genes, then what is the point of genetic testing? I was hoping that they was an option where you had neither gene.

Some people want to know if they are actually susceptible to Celiac. If they carry genes which can predispose them to the disease....in this case the genetic testing can be helpful.

I agree...if your son has symptoms which clear up on the diet...it doesnt really matter what his genes are.

happygirl Collaborator
happygirl
Posted

Cassidy:

Important to note that there really isn't a lot of research linking dr. fine's "gluten sensitive" genes to anything.

Wht I'm interested in---do all people with some sort of allergic response have a "gene" for it? If not (which I've never heard of), then why are there ones for gluten (supposedly)?

Laura

Rachel--24 Collaborator
Rachel--24
Posted
Wht I'm interested in---do all people with some sort of allergic response have a "gene" for it? If not (which I've never heard of), then why are there ones for gluten (supposedly)?

Laura

Laura,

Personally I dont think there is such a thing as gluten sensitivity genes. Like you said.....there is no real research/studies to support Dr. Fine's claim.

I think anyone who develops leaky gut will become sensitive to gluten....even those of Asian decent with the DQ4 gene (the only gene not recognized as a sensitivity gene by Dr. Fine).

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guest cassidy
Guest cassidy
Posted

My mother has a problem with gluten and when she found out she sent an email to the entire family. We found out yesterday that her brother (my uncle) and his daughter are now gluten-free and doing great. So, I know something runs in my family. My grandfather also died of stomach cancer. None of us were officially tested, we all just went the diet route, so would it seem more like celiac and less like gluten intolerance since there is such a family history? I didn't realize that gluten sensitivity genes were controversial. Does Dr. Fine think that gluten sensitivity is genetic as well?

celiacgirls Apprentice
celiacgirls
Posted

I did the Enterolab testing because it would tell me if I had the DQ1 gene as well as the DQ2 and DQ8.

I believe DQ1 is recognized by some neurologists as being linked to neurological problems due to gluten.

I also did want to know the likelihood of getting "official" celiac disease.

Since you already know there is some genetic link in your family, it might not be worth it to have your baby tested. He'll probably eat mostly gluten-free anyway and you will be quick to notice if gluten does cause a problem.

I haven't yet tested my kids but they are both gluten-free. I plan to test them at some point but it is more for curiosity than anything else. Also, if they do have one of the widely-accepted celiac genes, they might be more likely to stay on the diet as adults.

The Enterolab test was $149 when I did it.

JerryK Community Regular
JerryK
Posted

I did the gene test specifically because I wanted to know whether or not I carried the Celiac gene. I don't think there is a whole lot of value, as the earlier posters said, in the gluten sensitive gene markers, because everyone has them. In my case I have two, but do not have the Celiac gene.

In my case, the stool test and gene test indicated gluten sensitivity. Blood tests and the gene test ruled out Celiac. That's pretty much as good of an answer as you can expect.

Another thing to realize is (in my opinion and correct me if I am wrong) the gluten sensitivity genes are certainly arguable, because they are interpreted by Enterolab..and it is Enterolab that indicates which genes they think are pointers to gluten sensitivity. Granted the guy probably knows what he is talking about, but I'm sure there's plenty of room for debate.

So if you want to rule out Celiac, but not gluten sensitivity, the gene test is of value..

Of course then you could end up like me :lol:

Mtndog Collaborator
Mtndog
Posted

The good thing about Prometheus is that insurance will cover it if your doctor orders it. By the time I saw a celiac GI I was already gluten-free and had such severe reactions to gluten that she just went straight to the gene test. I ended up with the DQ8.

I don't know if insurance will pay for Enterolab.

happygirl Collaborator
happygirl
Posted
My mother has a problem with gluten and when she found out she sent an email to the entire family. We found out yesterday that her brother (my uncle) and his daughter are now gluten-free and doing great. So, I know something runs in my family. My grandfather also died of stomach cancer. None of us were officially tested, we all just went the diet route, so would it seem more like celiac and less like gluten intolerance since there is such a family history? I didn't realize that gluten sensitivity genes were controversial. Does Dr. Fine think that gluten sensitivity is genetic as well?

Cassidy: To my knowledge, Dr. Fine is the only one who recognizes the gluten sensitive genes. So yes, I would definitely say it is controversial in that we just don't know enough. I see it two ways---there are multiple genes linked to multiple foods (milk, soy, eggs, etc) that we don't know about, or there aren't genes. I don't really know what to think, considering gluten intolerance should typically be just like a casein, or soy, or egg, etc. intolerance....we never hear anything about those with "true" allergies (IgE) having specific genes....so why is there one for only gluten (delayed) allergy (IgG)?

Again, I don't know, I'm just throwing out the devil's advocate conversation that runs in my head. My problem is that I'm often too logical and can see the potentials in both sides of the argument! :)

chrissy Collaborator
chrissy
Posted

my family is involved in a celiac study being done at the university of california, irvine. there is no question that this is a reputable institution. the gal in charge of the study says she is not aware of any gluten sensitivity gene, and she said that they do not accept anyone into the study that has been diagnosed by enterolab.

dr. fine has been testing people for how many years? and he still can't get together his notes to publish??????

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy. Benfotiamine and other forms of Thiamine do not bother me at all. There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes. The sulfur in thiamine is in a ring which does not trigger sulfa allergy...
    2. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...
    3. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
    4. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

      Hello @Scatterbrain, Are you getting enough vitamins and minerals. Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D. By the way you should get your mom checked for celiac disease. You got it from your mom or dad. Some studies show that following a gluten-free diet can stabilize or improve symptoms...
    5. Scott Adams
      - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,291
    • Most Online (within 30 mins)
      7,748
    DottieLyn
    Newest Member
    DottieLyn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.