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Enterolab Results


Crimson

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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.


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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.


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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

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      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
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