Hla Lab Results

[notes21]

I am a newbie to the board, though I've been browsing it for a while for helpful hints. After two years of abdominal pain which would make me double over in tears constantly and numerous tests, I was sent to the MayoClinic. They thought it might be celiac but again my antibodies and biopsy came back negative. Rather than suggest still going gluten-free (as all food bothered me, even a liquid diet of soups, etc.), they said it was a motility disorder. After two more weeks of pain, I decided to try gluten-free. I had significant improvement and no longer had the sharp pain or constant tenderness within a month. My gastro agreed that it seemed to help and that I should stay on a gluten-free diet along with doing hla typing.

Unfortunately, after several weeks, I couldn't get anyone to give me the actual results of the labs. I did finally manage to get a lab report though I still am not positive what it means. I have tried to research online, but can't find everything. The results were:

DRB1 0401

DRB1 0802

HLA DQ 03CFTD

HLA DQ 0402

DRB4 01ZDV

DRB3 and DRB5 just had dashes next to them. From my searches, I think this indicates that I do not have the celiac genes. I know that my body has shown I have a gluten problem as even a slight amount can be felt. I know that not having the genes does not put you completely out of risk for celiac, but it does make a difference as to whether breaking down and eating a bite of red velvet cake at Christmas or getting a crumb from something else just makes me hurt (which I know isn't truly worth it) or whether its potentially killing my intestines. Any help that you all could give me would be a huge help and greatly appreciated!

Nancy

[Sesame]

Nancy I know how you feel. I have been seeing doctors for the last 10 year for a plethora of problems, most recently chest pains. I have all the symptoms of Celiac and more. I have been diagnosed with everything from Asthma, Eczema and IBS. I have at times been afraid to leave the house for fear of not being close to a bathroom. I stopped eating Wheat products about 4 months ago and everything has miraculously gone away. No inhaler, no more creams and I actually was able to do my own Christmas shopping without the constant mapping of any and all bathrooms in the area. I however was tested for Celiac and the test for the antibody came back negative? This was frustrating as I thought I would finally be able to give a name or diagnosis to several years of health problems. I am still up for further testing but I too have decided in the interim that even a bite of pizza isn't worth it? Good luck to you.

[lizard00]

I came across this article today about genetics. https://www.celiac.com/celiac-disease/understanding-the-genetics-of-gluten-sensitivity-by-dr-scot-lewey-r1032/

Basically, the doctor who wrote it says that with the amount of research done and his observations as of yet, the only DQ NOT associated with gluten sensitivity is DQ4.

So even though you do not have the "celiac" genes, you do have genes that could predispose you to be sensitive.

Definitely check out that article, it's a good read.

And welcome to the forum!

[ang1e0251]

I haven't had any tests. I dx'd myself through elimination diet. I have to say just listen to your body and instincts. You know what makes you feel bad and no test can dispute it. So go with what your body needs and what you know to be right.

[notes21]

Thanks for the link to that article. It was a good read. I'm still learning, and I guess I should be thankful that my doctor does recognize that gluten sensitivity exists......even though it took me doing it on my own to get there, he is supportive of it & has it in my chart now.

I came across this article today about genetics. https://www.celiac.com/celiac-disease/understanding-the-genetics-of-gluten-sensitivity-by-dr-scot-lewey-r1032/

Basically, the doctor who wrote it says that with the amount of research done and his observations as of yet, the only DQ NOT associated with gluten sensitivity is DQ4.

So even though you do not have the "celiac" genes, you do have genes that could predispose you to be sensitive.

Definitely check out that article, it's a good read.

And welcome to the forum!

[caek-is-a-lie]

I guess I should be thankful that my doctor does recognize that gluten sensitivity exists......even though it took me doing it on my own to get there, he is supportive of it & has it in my chart now.

That's great that you have support from your Dr. What a blessing! I'm kind of doing this on my own. My Dr.'s office is too skeptical of such things. But I don't care. I feel soooooo much better gluten-free I'm NEVER going back! Screw 'em! Haha!

[nora-n]

These gene tests do not sound like any of the gene tests we have had for celiac.

We get HLA DQ tests, usually HLA DQB1, but sometimes HLA DQA1 as well.

Check out the wikipedia pages on HLA DQ: Open Original Shared Link

and you might need the HLA DR page to decipher medical literature Open Original Shared Link

Our results look like this: (random posting from somebody)

https://www.celiac.com/gluten-free/index.ph...rt=#entry232540

I think if you contact them again, they can dig up your HLA DQ beta chain and possibly alpha chain results. Those you were given were something else.

nora

[notes21]

Mine were not done by enterolab. They were scripted by my doctor for the specific things that he was looking for and then sent through a regular lab (not Prometheus either, I had that test done previously which showed positive for Crohns). I know that I can't get anything more than what I have from them, unfortunately. There were HLA DQ results there though it didn't show whether A1 or B1. Hmmm, don't know where to go with this now.

These gene tests do not sound like any of the gene tests we have had for celiac.

We get HLA DQ tests, usually HLA DQB1, but sometimes HLA DQA1 as well.

Check out the wikipedia pages on HLA DQ: Open Original Shared Link

and you might need the HLA DR page to decipher medical literature Open Original Shared Link

Our results look like this: (random posting from somebody)

https://www.celiac.com/gluten-free/index.ph...rt=#entry232540

I think if you contact them again, they can dig up your HLA DQ beta chain and possibly alpha chain results. Those you were given were something else.

nora

[nora-n]

Not just Enterolab, but all other results here have had the same format, and one could decipher them by checking the wikipedia HLA-DQ page, by looking at the chart. Usually the beta chains, two of them, and sometimes the alpha chains too.

Sometimes they test for DR type, and then one must decipher them by looking at the chart at the wiki page for HLA DR. Medical papers sometimes just go by DR type when discussing celiac gene results.

Open Original Shared Link here you find that DQ2 is also DR3. (DR0301)

DQ8 is also DR4 and it can be DR0401, or 0402, or 0403, or 0404 or 0405.

Looking at the DRB1 column on the DR page, it looks like you are DRB1 0401 which can be DQ7 or DQ8.

In the HLA DQ line they write 03 ans some numbers, we would have it listed as HLA DQB1 03* if they do nothave the exact kind. I wonder what the DFTD behind the 03 means, could be they could not decipher it. Sounds to me like you might be either DQ 7 or DQ8.

You should note that DQ7 is often half a celiac gene, because of the 05* alpha chain.

So you very likely either are half DQ2, or the other celiac gene , DQ8, and the other gene is DQ4.

The other gene is DRB1 0802 which is not on the list, but they connect it with 0402 which is DQ4.

Bottom line: you are either half DQ2, or DQ8, both of which are celiac genes.

If they cannot decipher your genes, they should send your test on to another lab, as happened to someone else here.

She had a result that was negative for celiac genes, and she protested as she was already diagnosed some years ago with very high antibody numbers and biopsy. She just wanted to know the genes because of family. So they sent the sample on to another lab, and they found DQ8.

The last line in your results I could not decipher, maybe that is how they differentiate between DQ7 or 8. They should be able to answer that.

Note that most doctors would not be able to decipher those test results, and I could only do that because I have seen things about DR before (and I phoned the lab that did mine too and they talked about DR)

Nowadays labs have started to become better at reporting DQ results (in the past, often even doctors could not understand the test results), and they also have started to come up with better explanations about the risks for celiac. And that is the point, it is about the risks. Even people with other genes than DQ2 or 8 can be celiac, but the risks are much smaller. And those with double celiac genes, it just means the risks are higher, it does not mean one is celiac.

nora

[notes21]

Thank you for taking the time and effort to explain all of that to me. I did relook at the results and above what I posted it does does HLA DRB, DQB Typing. Does that narrow it down any for the DQ results? I think the DQ 03CFTD refers to the genetic tendency for Congenital Fiber Type Disproportion which is also referred to as CFTD. That was the only thing I could find. I will look more into the links, etc. that you posted.

The worst thing is that I had to go down to the Dr and request the physical copy of my lab report because I couldn't get anyone to give me the results. I kept being told that my doctor would call me with the results, but after almost a month and many calls he hadn't. One other time I couldn't get the dr to give me results and it was because the pill cam never left my stomach for that test & it was as if he didn't know what to do so I got no call.......that time I had to make an appointment to get anything and move to the next step. I have a feeling the problem is the same here --- he isn't sure how to read it or what to do.....so I get no call. Its very aggravating b/c generally I consider him a very good doctor who has really tried to help me figure this all out. I just don't know if he's even getting the messages to call with results or if he's just ignoring them.

Again, I appreciate so much you giving me the information and taking your time to help me. It is wonderful to know that there are people out there who you can turn to in all of this.

[nora-n]

I did a google search for DRB4 and only general stuff came up. DR53 came up but that did not change anything.

Check for yourself...

I did a google search for the whole DRB4 result, and there were a couple of hits on a forum, but they were discussing mold and lyme: Open Original Shared Link so those are not the usual test results we get here on this celiac forum....

Insurance will cover the usual celiac gene tests, which give normal answers....Prometheus, Kimball are two names that I recall, but you will have to do a search which ones will tell you teh actual genes, not just positive or negative for DQ2 or 8.

According to your results, your results are either DQ7 or 8, and DQ4 for the other gene.

Looking back at your results, your DQ7 is the type with 0300 in the alpha chain, and so it is not the kind with half a DQ2.

good to have that resloved.

we have others here with just a result of DQ7 to go by , and not which kind, so they wonder wehter they have half the DQ2 gene.

Your are either DQ7 DQA10300 DQB1 0301 (DRB10401) not a celiac gene because no 05* in the alpha chain) or you could have an official celiac gene, DQ8, DQB1 0302 (DRB10401)

I am not even absolutely sure about the DQ4 as your kind was not on the list. (0802) either it is DQ4 or DQ7, the kind with 0601 in the alpha chain, which is DQ1 which is gluten sensitive. I am looking at the DR list at wikipedia here. Anyway, it is DR8.

nora

[nora-n]

nancy, some people here would love to have tests like yours, as they can differentiate between the different DQ7 types, wether it is the type with 05* or not....

By the way, I was reading on the link from the forum I linked to, about mold and lyme, and there were some interesting things about mold there. We have discussed methylation and mold and lyme here in this forum before, and there is a lyme thread in the other food intolerance issues folder here.

"I was reading an article about mold illness that included the following list of potentially problematic foods:

Dried Fruit -- Raisins, apricots, prunes, figs, etc.

Aged Cheese -- some cheeses are okay if milk is not a problem. e.g. cottage cheese, mozzarella, provolone, ricotta and farmers cheese.

Leftovers -- Eat within 24 hours, unless frozen

Mushrooms

Over-ripe Fruits and Vegetables --(Discolored, wilted, mushy)

Breads -- Check ingredients. Malted means moldy. Dough conditioners are moldy. Sourdough is the worst (sometimes labeled yeast-free). Bread develops surface mold after a day. Tortillas, biscuits, muffins, cakes and cookies are usually yeast-free.

Tomato Products -- Juice, sauce, paste, ketchup, etc., are made from moldy tomatoes.

Beer -- The darker the brew, the more mold it contains.

Wine and Wine Vinegar -- White wine is least moldy: clear vinegar may be tolerated.

Most Liquors -- Vodka, Tequila, clear rums are least moldy.

Multi-B Vitamins -- Contain either yeast or mold (rice hulls are moldy)

Processed Meats -- Hot dogs, sausage, salami, bologna, etc. Solid preserved meats such as ham, turkey, pastrami, may be okay.

Hamburger -- Often from aged meat: eat within a day of grinding.

Products of Aspergillus Fermentation -- Soy Sauce, Chocolate, Tea(black), Malt Extract (bread, cereals), Lactaid (milk additive), Citric Acid (a common food additive; not derived from citrus fruit)

Fruit Juice (commercial -- often from moldy fruit, many contain mold enzymes added in processing), Digestive Enzymes (pancreatic are okay), Cholesterol-lowering Enzymes.

Note: All foods will become moldy with time. Shop frequently, buy in small quantities. Read labels. Molds thrive on sugar, so control your intake.

"

(I have IgG antibodies to yeast and I figure I react to mold as well)

Check further down in that thread: someone has the same gene result as you:

"...her ...HLA DQ was 03AFB and mine is 03CFTD. ...........

DRB1: 0402

DRB1: 0701

HLA DQ: 02MS

HLA DQ: 03CFTD

DRB3: -

DRB3: -

DRB4: 01ZDV

"

They all have results in the same format as you. Must be a specific test.

Here they come with an explanation:

"When we look at the HLA-DR test for purposes of determining a person's immune system response to biotoxins, we only use the first two numbers of each result.

So your 03CFTD and Q's 03AFB are both 03 for our purposes.

(Dr. Shoemaker explains this in the appendix of Mold Warriors.)

So you have the same genetic combo that Q has: one multi-susceptible gene and one mold-susceptible gene.

This just tells you that your immune system is not good at recognizing and expelling many different kinds of biotoxins. Having a multi-susceptible gene means you are unable to naturally get rid of lots of things besides mold toxins. I listed some examples of other biotoxins earlier in this thread.

If you're not sick at the moment, then this is just useful information to know. You can avoid exposing yourself to things that might really make you sick.

For example, you could pay attention to the place you live and the place you work. Make sure they don't get a toxic mold infestation. And if they do, get out right away and don't take any chances by trying to remediate it.

You could also pay attention to ticks when you go outdoors. You could take precautions like wearing long sleeves and checking your skin afterwards or wearing tick repellent.

...

If I had known I had a mold-susceptible genotype, I never would have rented a basement apartment, which is where I lived when I came down with CFS. It would have been a no-brainer not to live there.Being forewarned is forearmed, as they say.

"

Here is a link to such a result, a pdf someone scanned, I think it is just like your result: http://home.comcast.net/~quantumkitty/imag...TestResults.gif

nora

[lizard00]

Nora

Can you give me genetic lessons??? LOL

How are you so good at this stuff??? It interests me, but when I read it, it looks unlike any language I've ever seen.

Sorry for the silly interruption... carry on.

[nora-n]

Hi, this test result is in a bit different format from the usual format, so I am not 100% sure about the interpretation. ......

This is what I could decipher from the DR wiki page.

I have read a little bit in scientific papers about celiac genes, and often they just go by HLA DR, so I had to look it up, and now I already knew where to look it up.

I notice the patients that use the Shoemaker book have the exact same format on their tests. so I wonder what tests they are.

I do not blame the doctors for not knowing what to think of test results like that. One has to look up the charts on DR and DQ , and has to know where to find them, and has to know what they mean. .....

Here is a old page on enabling.org that was good at explaining the DR thing:

Open Original Shared Link I had to go to waybackmachine to get it back, the original webpage is gone.

Some excerpts:

"HLA typing can be done either by analyzing the genes which code for the HLA molecules or by analyzing the HLA molecules themselves. Today most laboratories perform HLA typing by analyzing the HLA molecules on the surface of cells. Conveniently the typing is done with leukocytes (white blood cells) that are isolated from a blood sample. In some few years gene-analysis may become the standard way of doing HLA typing."

comment: if you read the wikipedia page on HLA-DQ, you see that some labs test with antibodies, and some with PCR.

"How many different types of HLA markers are there?

Your HLA type can be called your body type just as your particular ABO type is your blood type. HLA terminology is rather complex. To make matters worse, the coding has been changed several times by the immunologists. The following is an attempt to explain the HLA system in a simplistic way:

HLA molecules exist in two classes. HLA-A, HLA-B and HLA-C molecules make up the class I molecules and HLA-DR, HLA-DQ and HLA-DP molecules make up the class II molecules. All HLA molecules consist of two units; an alpha chain and a beta chain. For each chain there is a corresponding gene. The genes coding for HLA molecules (except the gene coding for the beta chain of class I molecules) are positioned on a stretch of chromosome 6 like pearls on a string. For each gene locus (each position) there exist a large number of variants or alleles (colors of pearls). For some loci there are more than 100 different variants described! Each individual has two chromosomes (pearl strings) which are inherited from the mother and the father. The composition of alleles on the two chromosomes (combination of colored pearls on the strings at different positions) are characteristic for each individual. Typically, the genes of one chromosome (the colored pearls on one string) code for one HLA-A molecule, one HLA-B molecule, one HLA-C molecule, two HLA-DR molecules, one HLA-DQ molecule and one HLA-DP molecule. Provided that the genes on the individual's two chromosomes code for different variants (i.e. there are different color of the pearls in the corresponding positions on the two strings) an individual may express as much as 14 different HLA molecules. (The number can be larger as in some instances alpha- and beta-chains of HLA-DQ and HLA-DP molecules that are coded for by genes on opposite chromosomes may form functional molecules).

Which alleles (color of pearls) that occur together at the various loci (positions) are not completely random. Some combinations are particularly frequent. Several combinations of alleles (color of pearls) are usually maintained together as gene blocks (segments of pearls). If you have one particular allele (color of pearl) at one locus (position) you very often have another distinct allele (color of pearl) at a neighboring locus (position). This phenomena is termed linkage disequilibrium and is very important for understanding association of certain diseases with particular HLA markers."

"Which HLA markers are associated with Celiac Disease? I have been confused, sometimes reading about DQ2, at other times about DR3, B8 and other markers.

The three markers DR3, B8 and DQ2 are all associated with Celiac Disease. The reason for this is that the genes which code for B8, DR3 (also termed DRw17) and DQ2 are in linkage disequilibrium. They are part of a gene segment that is usually maintained as a gene block. This fact has posed a problem in the work to identify which molecules are actually involved in the development of Celiac Disease and which alleles are just associated with celiac disease because the genes coding for these molecules are usually linked with the predisposing genes. In other words: Which of B8, DR3 or DQ2 are actually involved in the development of Celiac Disease and which are just marker molecules?

Those Celiacs who are not DR3 positive very often are DR5/DR7 (DR5 is coded for by genes on the one chromosome and DR7 is coded for by genes on the other chromosome). Individuals who are DR3, almost always also are DQ2 (because the genes coding for DR3 and DQ2 are in linkage disequilibrium - they are in a conserved gene block). The names of the genes in this gene block that jointly code for DQ2 are DQA1*0501 (which codes for the alpha chain) and DQB1*02 (which codes for the beta chain). The DQA1*0501 gene also exists in a gene block that contains the gene coding for DR5, and the DQB1*02 gene exists in a gene block that contains the gene coding for DR7. Individuals who are DR5/DR7 may thus also possess the DQA1*0501 and DQB1*02 genes. In contrast to individuals who are DR3-DQ2 the DQ genes in DR5/DR7 individuals which code for DQ2 are located on two different chromosomes. This explains why DR5/DR7 individuals also have a predisposition to develop Celiac Disease and strongly indicates that it is DQ2 coded for by the DQA1*0501 and DQB1*02 genes that actually are involved in the development of Celiac Disease. About 95% of the Celiac population carry these particular genes.

In addition, another 4-5% of the Celiac population have genes that code for DR4 and DQ8 molecules (the genes coding for DR4 and DQ8 are maintained in block of genes). Probably it is the DQ8 molecule that mediates the disease predisposition in this subgroup of patients. Some very few Celiacs are neither DQ2 nor DQ8 implying that HLA typing is not a perfect predictor of risk for Celiac Disease."

[notes21]

Nora -- that link you posted to the mold/lyme posts and food list makes a lot of sense to me. I saw that several people who had similar results to mine were shown as being mold-susceptible. That provided a huge "Ah ha" moment for me.

Two years ago when I first started having problems, I had recently moved back into my classroom after being removed from it for 5 months because of a severe mold problem. At that time, they thought it was gallbladder & my gallbladder was removed in May. I went back to work for about 2 weeks and then was out for the summer. I felt better all summer. About a month after school restarted, we found mold in my classroom again. I had to move out again. At the end of October, beginning of November, my stomach pain started up again. We finally figured out that the humidity in the room was out of control and got that fixed, mold recleaned, and moved back into the room. During this time, we went through many different things stomachwise and at the end of May, they started me on Reglan thinking my stomach didn't move. I felt better but not great & when Mayo thought it was intestinal motility not stomach, I really didn't notice any difference from the change in meds. I just think this is very interesting and wonder if avoiding all of those things mentioned would help and if I could eventually be able to eat normally again or what. Anyway its a lot of 'food' for thought for me about what to do now.

[nora-n]

A lot of people here have posted that mold started the whole issue with them.

You can even have celiac triggered from mold.

There are several postings about that here.

One woman used to be fine, even with chronic lyme, until she bought a sleep number bed and those are very moldy....

The whole issue of methylation blocks, mold , gluten and lyme is a bit complicated. But they can be connected.

Maybe you figure it out soon? You already have accidentally gotten HLA test results you can post over there....

In the meantime, there are more connected postings and topics here, maybe a search will bring up some more things.

Do you by any chance have lyme, or suspect it?

There is a good lyme thread here in the other food intolerance issues folder here.

Anyway, happy new year, I will soon head out the door for a new year party, it is newyear here in six hours.

nora

[nora-n]

I was browsing the fibromyalgia forum I linked to, and to find out if they are sensitive to mold and lyme (according to Shoemaker), they get a HLA DR by PCR test done. That is how they get results in that format.

That is why you did not get which beta chain you have, you have 03 in one beta chain, and that can be 0301 which is a DQ7, or 0302 which is a celiac gene 08. Your DR type excluded DQ9.

Your other gene was not on the list in wikipedia either.

Maybe you can "complain" to the lab or doctor that the wrong test was ordered, a HLA DR instead of the celiac HLA DR test.....aat least, you can as the doctor to order another test, this time HLA DQ.

Still, I think you by accident had a relevant test for mold sensitivity...

And, no, if you are sensitive to mold, you cannot tolerate a buiding that has been "cleaned" for mold, mold toxins bond to surfaces in a certain way so it cannot get off, it has to degrade to disappear. According to that thread.

nora

[nora-n]

For anybody else browsing, a little bit more about HLA DR and MHC class stuff can be found at Open Original Shared Link and Open Original Shared Link from Open Original Shared Link

Open Original Shared Link

Those are very old, but they are useful for reading up on HLA DR and other terms for use who are only used to HLA-DQ. (the original pages are not available anymore, so these are webarchives)

[notes21]

I started a mold free diet on Thursday along with probiotics which my chiropractor had already recommended that I get on. She has also recommended that I try an antifungal supplement like for candida which I hope to get on shortly. The mold free diet is still gluten free, but also removes those other things on the list posted earlier. The one Im doing is modified from a few different ones that I found online. No matter what, it is eating very healthy with a focus on meats and veggies so it should be good for me. I'm not going to assume that it will cure my problems, but if doing this for a short time can help at all in just healing my gut, I'll be happy. I have seen several things and found that several friends that had candida had intolerances until they followed something like this. Once they cleared the problem, they no longer had problems with food (It's amazing what you learn about/ from friends when you start talking about some of this).

I'm wondering if I'm crazy to be trying this in some ways, but this whole process has pretty much been me feeling my way in the dark. I know that I was exposed to a very bad mold situation, and that my problems started after that. This might not be the answer, but I figure its worth a shot. My endoscopy biopsies were all negative and my antibodies were so far from positive it was insane (0.4 with 0-20 being normal). Even if I do have the celiac gene, I know it doesn't mean I necessarily have celiac. If I can introduce things back into my diet without pain after this, great..... If not, at least I'll be eating healthier and maybe find out if anything besides gluten is giving me a problem. Maybe, I'll drop a pound or two as well which I could definitely use. I know that not all doctors recognize the whole candida/mold toxin thing, but some don't recognize gluten intolerant without celiac either.

On my classroom in the cleaning process, the carpets and ceiling tiles were removed/ replaced and I have cement block walls which were cleaned by the environmental team. The air quality levels are and have been supposedly good for a while now. I definitely had some bad asthma problems during the time that we didn't realize the humidity levels were off the charts and before the mold became obvious. I have been better this school year than last but thought it was because of the meds I'd been on. Maybe it was just getting away from all of that over the summer and them recleaning over the summer. Who knows on all of that stuff???? Unfortunately, I'm the band director so its not like I can request the school to move me to another room as mine is the only one that can fit my class and has the required soundproofing.

Sorry to be rambling along, I'm just really thinking a lot about this. Another teacher at the school & I always thought it was weird & that there was a connection between the mold and my stomach, but we didn't have any idea how that could be. I guess I'm just trying to reassure myself that I'm not completely crazy.

[nora-n]

I hope you get better, and that eliminating and avoiding mold will get you better.

If not, there may be some detox problem which they speculate is genetic on some forums (some talk about it here, and on that other forum an probably other places, like cfs forums, and lyme forums)

Some have found out that they also have a component of lyme and/or co-infections or HHV or something that burdens the body, and makes it more difficult to get rid of heavy metals. Just to mention it.

nora