Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Recommended Posts

Guest cassidy

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

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
.......

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

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
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

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
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

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

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

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

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
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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748

    Leeila
    Newest Member
    Leeila
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...