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

Enterolab Results


Crimson

Recommended Posts

nora-n Rookie

The beta chain0201 is enough for DQ2,5 because it automatically means that the DQ2 is on the same gene, whereas the DQ2,2 = beta chain 0202 means the other part of the DQ2 sits on the alpha chain and this type of DQ2 is less prone to celiac.

Open Original Shared Link

Of course the alpha chain is not tested at enterolab so there is a theoretical chance there is a different alpha chain than in the typical gene result.

What Dr. Lewey writes about the alpha chain, and the wiki about the alpha chain, that it also means something, is a bit new .

But, the beta 0201 0201 being enough for homozygotous DQ2,5 should be enough. Any speculation about a different alpha chain than DQA1 0501 is purely academical.

By the way, the alpha chain 0501 alone means half a DQ2 gene and that alone predisposes to celiac alone, so Enterolab will miss that constellation.

This alpha 0501 alone is missing from the list of risks here. (it has no name yet I think, besides being half a DQ2,5)

And the thing that confuses pwople here is taht they have not yet spelled out DQ2,2 for the less celiac risk DQ2 and DQ2,5 for the high celiac risk DQ2 gene. I guess this is why some have started to specify which kind of gene they talk about. This is all new.

This is how I understand the subject. Please correct me if I am wrong, I am just studying the new things.


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



Celiac.com Sponsor (A8-M):



fedora Enthusiast

I researched genes for many many hours.

The alpha part of the celiac gene( A0501) can be found on some DQ7 genes.

so having the DQ2.2 and the right DQ7 gene makes the full celiac gene.

DQ2.2 has been proven in lab tests to induce gluten reaction, just not to the level of DQ2.5. Only rarely does it pass the threshold to cause villi damage.

nora-n Rookie
I researched genes for many many hours.

The alpha part of the celiac gene( A0501) can be found on some DQ7 genes so having the DQ2.2 and the right DQ7 gene makes the full celiac gene.

Yes i remember I read something like that last year or so.

On the forums, we have other genes that are very celiac or gluten-sensitive, especially DQ1 and at least one double DQ9 (the explanation for DQ7 and DQ9 being celiac-prone but to a lesser degree is that they are very very similar to the celiac gene DQ8)

I think I am DQ1, but I will have to find a way to get a sample to enterolab. I think the shipping alone is about 80 usd. plus the cost of the test. OR, I could try to get a second opinion at a hospital that does research. Sollid's research lab did my gene test but they only reported absence of DQ2 or 8. I do not know if they used serotyping or electrophoresis, I just think they used serotyping. I phoned the lab and they could not even anwer me. Sounded like they did not know, not that they did not want to answer. Sollid is a celiac gene researcher, and how much is the research worth if they did not test the alpha part? The conclusion here is that absence of DQ2 or 8 proves that hte person cannot be celiac. So my doctor has applied an appointment with a psychiatric clinic because Sollid's research lab proveed I cannot be celiac and so I must have psychatric issues because I refuse to eat gluten.....

Of course I know I am not nuts and noone can refuse me to eat gluten-free.

nora

mftnchn Explorer

Nora, I am sorry you are dealing with so much ignorance in the professional community that should be helping you.

I appreciate you and others who are posting on this topic.

What about one of the other labs in the US that tests on both parts of the gene?

Re the shipping, do you have a friend who travels back and forth to the USA? I am outside of the USA and often can have someone bring something back and forth. Get the kit brought back to you and send the kit back with someone all ready to drop in the Fed Ex box or whatever. It can at least save the extra in the shipping costs.

Sherry

nora-n Rookie

Hi, someone here was gonna go over to the US. now in may, but she did not go after all. I will have to wait for another chance......I think Enterolab would be the best bet to get some result. Kimball only tests DQ2 and 8, but both the alpha and beta chain. Some people may need both labs....

  • 3 months later...
craigiecarter Newbie
Crimson,

Although you do not have a WHOLE celiac gene, your two genes come together to form the celiac gene. The beta part of the DQ2.2 gene is the same as the beta part in the celiac gene DQ2.5. The DQ7 gene you have is the same as the alpha part in the celiac gene DQ2.5. Enterolab doesn't tell people this, but it is true. I just don't think it is common.

This is known and accepted in the medical world. Yes you have a genetic link.

DQ2.2 alone and DQ7 alone have both been linked with celiac, just rarely.

This is a somewhat old thread, but Fedora, you've recently replied to me about my dd's EnteroLab results. I actually have glorious and rare quiet atm (which will soon end when the kids return with dh, lol), but I've been doing tons of reading that you and Nora suggested and just need to make sure I understand correctly.

Crimson has the same genes as my dd (0202, 0302, HLA-DQ 2, 3, Subtype 2, 7). From the abstracts I've read and from what you and others have said, that, plus her elevated stool TtG would indicate Celiac Disease and not "just" gluten intolerance, no?

I think I'm really starting to understand this now. I've seen those Wiki pages so many times. Now I look at it and see that with 0202 on DQB1, she either has 0201 or 0302 on the DQA molecule, and with 0301 on Allele 2, she could also have 0201 on DQA.

Still a bit overwhelming, but it's coming together. If you (or anyone else) catch this and can confirm that I'm on the right track, I'd much appreciate it. I'm often wrong when I think I understand!

Best wishes to Crimson and Tinpat, etc, who are still trying to figure it out and feel better!

chb Rookie

Thanks so much cragiecarter for bumping this post up.

I'm sure I glanced at it at the time, but I didn't know my gene testing results then which also happen to be the same as Crimson's.

I actually had my endoscope done the day of the original post. Since my endoscope looked good, my blood tTg was not elevated, and I have no GI symptoms, the GI doc did not give me a diagnosis of celiac. I was just told, stop eating gluten if it makes you feel better.

My Enterolab results showed all of my values elevated except for malabsorption. Wheteher it all makes me celiac or just "gluten intolerant" all I know is I feel soooooo much better now. I suffered from fatigue and nuerological problems.


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



Celiac.com Sponsor (A8-M):



mftnchn Explorer

Yes with the DQ2 genes it is important to now see if you have a 0201 or 0202 type. The 0201 is the celiac gene, the other has a lot less association with celiac. It can however, be combined with the DQ7 to form an equivalent to the celiac gene. (One piece of each together is equivalent to the main gene).

leadmeastray88 Contributor

This is my genetic analysis:

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

So I know the 0201 is the celiac gene, but the 0202 with the right DQ7 gene can create a celiac gene, am I wrong?

Does anyone know of any labs that test for the alpha chain too?

fedora Enthusiast

yes...I think ya'll have it.

DQ2.2(the subtype 2) and one of the DQ7 genes form the COMPLETE celiac gene DQ2.5

DQ2.2 has the beta part 0202 and DQ7 has the alpha part 0505.

These two together act the same as the DQ2.5 gene that has alpha 0501 and Beta0201.

Also it makes no difference if the complete gene is on one chromosome or on two. It works the same.

I believe that Kimball tests for the alpha part. You can google and find out. Also Scott Lewey just wrote an article on the different genetic tests available.

I would like to add about DQ2.2 that in studies of confirmed celiacs in Europe it is the most common gene in celiacs who do not have DQ2.5 or DQ8

Also it has been proven in labs to respond with anti gliadin and anti tTg antibodies just not usually at the level that causes celiac intestional damage. However, if these antibodies are being made then they are completely capable of causing damage elsewhere. these antibodies can travel and hurt us. I have only the DQ2.2 gene without the DQ7 gene, but I have multi system symptoms including digestive, skin, hormonal, blood pressure, anemia, mood, and brain functioning. I definately have an autoimmune response and my doctor thinks I have celiac even though I never got bloodtested or a biopsy.

I just don't want people with DQ2.2 to think there is NO WAY they can have celiac. If you are responding well to no gluten, then that tells you alot.

here's a link about DQ2.2 reacting to gluten. Open Original Shared Link

good luck...happy healing

craigiecarter Newbie
Thanks so much cragiecarter for bumping this post up.

I'm sure I glanced at it at the time, but I didn't know my gene testing results then which also happen to be the same as Crimson's.

I actually had my endoscope done the day of the original post. Since my endoscope looked good, my blood tTg was not elevated, and I have no GI symptoms, the GI doc did not give me a diagnosis of celiac. I was just told, stop eating gluten if it makes you feel better.

My Enterolab results showed all of my values elevated except for malabsorption. Wheteher it all makes me celiac or just "gluten intolerant" all I know is I feel soooooo much better now. I suffered from fatigue and nuerological problems.

You are welcome; I can't let something drop until I get it, lol. My name is Christie, btw. I need to make a siggy I guess.

Knowing what I do know about this, I'm a big believer of the proof being in the gluten-free (and in our case Dairy-Free) pudding. I'd go on a rant about my doctor experiences, but let's suffice it to say that I don't have a "Dr. is God" complex. The only ped. gastro around here was more than content to send us on our merry way, essentially saying that a high IgG was nothing.

It took me a while, but I'm glad I finally listened to my mommy gut. I sure hope that you continue on the path to wellness. Something so many take for granted, eh?

On the positive side, my mother came for a rare visit today and was marveling at the nutritious meals I was preparing. We all eat a lot better now, and for that I am grateful. Not being able to buy all that processed convenience food is a blessing (ask me again when I have nothing prepared for dinner

Christie

craigiecarter Newbie
yes...I think ya'll have it.

DQ2.2(the subtype 2) and one of the DQ7 genes form the COMPLETE celiac gene DQ2.5

DQ2.2 has the beta part 0202 and DQ7 has the alpha part 0505.

These two together act the same as the DQ2.5 gene that has alpha 0501 and Beta0201.

Also it makes no difference if the complete gene is on one chromosome or on two. It works the same.

I believe that Kimball tests for the alpha part. You can google and find out. Also Scott Lewey just wrote an article on the different genetic tests available.

I would like to add about DQ2.2 that in studies of confirmed celiacs in Europe it is the most common gene in celiacs who do not have DQ2.5 or DQ8

Also it has been proven in labs to respond with anti gliadin and anti tTg antibodies just not usually at the level that causes celiac intestional damage. However, if these antibodies are being made then they are completely capable of causing damage elsewhere. these antibodies can travel and hurt us. I have only the DQ2.2 gene without the DQ7 gene, but I have multi system symptoms including digestive, skin, hormonal, blood pressure, anemia, mood, and brain functioning. I definately have an autoimmune response and my doctor thinks I have celiac even though I never got bloodtested or a biopsy.

I just don't want people with DQ2.2 to think there is NO WAY they can have celiac. If you are responding well to no gluten, then that tells you alot.

here's a link about DQ2.2 reacting to gluten. Open Original Shared Link

good luck...happy healing

I had tried to correct my post, but it seems to not have worked (still new to forums). At any rate, she actually has 0301, not 0302.

Here is the link to that Lewey article that I think you are referring to: https://www.celiac.com/articles/21567/1/Ten...ting/Page1.html.

Kids just barged in, so I'll have to read that link later, but thanks so much as always. To think, I've never been one for jigsaw puzzles, but this I can't give up on :P

Christie

fedora Enthusiast

Christie and others wondering,

When you get Enterolab testing it only shows the beta part of the genes and not the alpha part. The DQ7 gene has the beta parts 0301, 0302, and 0304(according to wikipedia. There probably is a 0303 but it is rare).

The DQ7 gene that has the correct alpha half of the celiac gene has the beta part 0301.

So Christie your daughter could have it. The thing is that there are several variations of the DQ7 gene that have the beta 0301 part. Only one of those(according to wikipedia again)has the correct alpha part 0505.

Hope the diet is working for her.

nora-n Rookie

By the way, 0303 is normally DQ9, which can be a celiac gene too according to scientists as there is just one base difference from DQ8. Or, it may be a form of DQ2 sometimes see wiki for DQ2.....

Enterolab tests for serotypes, and the people posting with enterolab results now report that the results state the testing was done by the American red cross.

There is electropheresis, and serotyping, and another test method, forgot what it was. The wikis on DQ ans the different DQ types state how sensitive each test method is (mistyping is common)

The genes are like cookie forms, and the serotypes are like the actual cookie. The cookie DQ2 can be made up by either 0501 0201 or the other combination DQ2,2 (0202 in teh beta chain) and the half gene from one of teh DQ7's. I would think it is the most common DQ7.

nora

  • 5 months later...
Rebecca's mom Rookie

Hi all,

I am new to this thread. Our youngest daughter was diagnosed with celiac disease in April of 2008 - no outward symptoms, but since she has Down syndrome her pediatrician ran a screen. Her numbers were off of the chart, and she had borderline Stage IV intestinal damage. After doing research, I determined that my skin rash must be DH, even though blood testing showed no sign of celiac disease. My husband's gliadin antibody was slightly elevated, but otherwise everyone else tested negative for celiac disease through a blood screen.

However, hubby was having all kinds of problems, and I was doing so well on a gluten-free diet that I insisted that he and the girls have testing done through Enterolab. All of them are producing higher than normal antibodies to both gliadin and tTG, so no more gluten when we go out to eat (the kitchen was gluten-free immediately after 1st daughter's celiac disease diagnosis).

All 3 of them showed 2 copies of gluten-sensitive genes, so I am assuming that I must be the one carrying a celiac gene (if not, it will be really interesting to figure out what is causing celiac disease in our youngest daughter and the implications for the Down syndrome population). However, in other threads on this discussion, I am starting to wonder if one of our daughters might not also be predisposed to celiac disease, despite her blood test results.

Here are the Enterolab results; if someone could help me out, I would really appreciate it!

Hubby: Allele 1 0202

Allele 2 0603

Serologic Equivalent HLA-DQ 2,1 (Subtype 2,6)

Anti-Gliadin 22 Units

Anti tTG 19 Units

Daughter #2: Allele 1 0301

Allele 2 0603

Serologic Equivalent HLA-DQ 3,1 (Subtype 7,6)

Anti-Gliadin 29 Units

Anti-tTG 23 Units

Daughter #3: Allele 1 0202

Allele 2 0301

Serologic Equivalent HLA-DQ 2,3 (Subtype 2,7)

Anti-Gliadin 11 Units

Anti-tTG 9 Units

If I understand what some people have written in this forum, Daughter #3 would appear to have the "Complete" Celiac Gene by virtue of the 2.2 and the "7" component. She does have some skin lesions similar to those that I have (my rash isn't very itchy), and she decided ON HER OWN to try a gluten-free diet while away from home during school hours, because she wanted to lose weight like I have. As you can see from her results, she does not have as many antibodies produced as the other 2 family members (she is only 1 year younger than Daughter #2).

I should mention that the ONLY person in the entire family who has GI issues is my husband - the rest of us have the proverbial "cast-iron" stomach. I guess we all fall in the "non-traditional" part of the celiac disease spectrum. I am also thinking that perhaps I should go ahead and have the genetic test run on both myself and our youngest daughter - I already know that I have the HLA-DQ 3,7 (based on the other 3 family members' tests), but it is impossible to know what my other gene is without testing, and I don't have a clue what Rebecca's profile might be.

Any help that ANYONE can give me in interpreting these test results would be greatly appreciated. I am especially interested in the results of Daughter #3, given that she is willing at this point to give the gluten-free diet a try. Daughter #2 is fighting us every step of the way, and since she will be going off to college in September, I am trying desperately to convince her that she needs to be on a gluten-free diet. As I said before, there is nothing at our house that has gluten in it, and since we got these test results in we have told daughter #2 that when we go out to eat, she is not allowed to order foods that have gluten in them. We refuse to contribute to potential intestinal damage. She's not very happy with us at this point, but oh, well.......

Thank you again!

Teresa Koch

Fort Worth, Texas

P.S. Daughter #1 is away at school in New York, and doesn't want to hear about gluten anymore. We have offered to pay to have her tested, but she has refused, and since she is over 18, we can't really force the issue (another reason that we insisted that Daughters #2 and #3 get tested now.....). At the very least, she has 2 gluten-sensitive genes, but what are you gonna do?

fedora Enthusiast

hi,

so ,I want to get this straight...you have 4 daughters? One not tested, one tested positive for celiac but you don't know her genes, and two more listed here.

after you clarify, I'll repost, but for now....

yes daughter #3 has a strong possibility of having the complete celiac gene.

You have at least half, hubby has half, daughter # 2 has half

the half genes can cause gluten intolerance and celiac, though not at as high of a rate as the complete gene.

good luck

Rebecca's mom Rookie
hi,

so ,I want to get this straight...you have 4 daughters? One not tested, one tested positive for celiac but you don't know her genes, and two more listed here.

after you clarify, I'll repost, but for now....

yes daughter #3 has a strong possibility of having the complete celiac gene.

You have at least half, hubby has half, daughter # 2 has half

the half genes can cause gluten intolerance and celiac, though not at as high of a rate as the complete gene.

good luck

Yes, we have 4 daughters, with the oldest in college, and the youngest having a positive blood test and biopsy for celiac disease in April, 2008. The daughter with celiac disease has Down syndrome, which is why she was screened in the first place - she had NO symptoms, but her numbers were off of the charts!

I am wondering if I should go ahead and have the genetic test run on myself and our youngest daughter - there isn't any need to do a stool test, as Rebecca is positive, and I am NEVER going back on gluten! I am also wondering if we should use Enterolab or if we should look into a different lab that will give us a complete alpha and beta profile of ALL of the DQ alleles. Do you know which lab is best for this type of test?

Thanks so much for your help -

Teresa K.

RollingAlong Explorer

I am also wondering if we should use Enterolab or if we should look into a different lab that will give us a complete alpha and beta profile of ALL of the DQ alleles. Do you know which lab is best for this type of test?

Here's a link to an article by Dr. Lewey talking about the Prometheus lab and how they test. Probably better for you than Enterolab. Good luck!

Dr. Lewey

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,553
    • Most Online (within 30 mins)
      7,748

    Jennifer CCC
    Newest Member
    Jennifer CCC
    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

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.