I am beyond confused with what all this means. I know after talking with the nurses at Enterolab that I am Non-Celiac Gluten Intolerant, with odds of less than 1% of developing Celiac, and am starting to follow a GF/CF/SF diet, however, I'm still confused as to what these numbers really mean.

What genes do I have? What do these gene combinations say? And do I need to get more testing besides somewhere from LabCorp?

Enterolab Results

HLA-DQB1 Molecular Analysis, Allele 1 0301
HLA-DQB1 Molecular Analysis, Allele 2 0602

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

Interpretation of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

LabCorp Results
Test: Celiac Disease Comprehensive

Deamidated Gliadin Abs, IgA

• Results: 1.0 U/ml
• Reference Interval 0.0-10.0

Deamidated Gliadin Abs, IgG

• Results: 1.0 U/ml
• Reference Interval: 0.0-10.0

t-Transglutaminase (tTG) IgA

• Results: <4 U/ml
• Reference Interval: 0-3

Negative 0-3
Weak Positive 4-10
Positive >10

t-Transglutaminase (tTG) IgG

• Results: <6 U/ml
• Reference Interval: 0-5

Negative 0-5
Weak Positive 6-9
Positive >9

Sorry this is so "medical", but hopefully someone can help me read these reports and have a better understanding.

Anti-tTG antibodies are those associated with villous atrophy aka celiac disease.

The deamidated gliadin antibodies are new ... perhaps out for a year now. They are also more specific to villous atrophy than the original antigliadin antibodies were. This is ok if you are only concerned about villous atrophy.

What we know (and there really is a lot of evidence out there) is that many people have gluten sensitivity causing both gut and non-gut symptoms without having celiac disease. This is best determined by either the original antigliadin antibody (AGA IgA and IgG) or the stool test by Enterolab or a positive response to the diet.

I have tons of reading I could offer you... here are a couple articles:
http://findarticles.com/p/articles/m...c/ai_94538644/

https://www.enterolab.com/StaticPage...yDiagnosis.htm

and many other sources that discuss the difference between gluten sensitivity and celiac disease.
http://jccglutenfree.googlepages.com...sceliacdisease

I'm not sure what your symptoms are, but especially for those of us with neurological symptoms... gluten sensitivity can manifest with or without villous atrophy (villous atrophy required for a celiac diagnosis).

Your blood work and genetic testing does pretty much rule out villous atrophy aka celiac disease. It does not rule out gluten sensitivity, which can cause all the same things, and is associated with autoimmune disease and other wide ranging conditions. Check out The Gluten Fileif you haven't and just scan through it for areas of interest.

Hope this helps. I would absolutely encourage you to make the dietary changes and give it at least six months before deciding whether it is helped you. Many people know within the first weeks they are improving, but for others the improvement is slow, and better realized after many months. Log the symptoms you have now, with some scale for severity... and re-assess over time (month by month) for signs of improvement.

Cara

This may be more than you are interested in knowing...

As for antigliadin vs. deamidated antigliadin antibodies... here is some additonal info gathered from a recent article by Marios Hadivassiliou, a leader in gluten related neurological disease research. I'm copy/pasting this from a post I made elsewhere. Mostly, it explains that the new deamidated antigliadin antibodies are not so great for diagnosing gluten sensitivity that manifests in non-gut ways (neurological disease like ataxia, pn, migraines, or dermatitis herpetiformis which is a skin rash, or other non-gut symptoms).

The article gives a nice review of the various neurological manifestations of gluten sensitivity and some of his more recent findings.

Of particular note is a diagnostic flowchart for a patient with possible neurological manifestion of gluten sensitivity (ataxia, peripheral neuropathy, seizures).

The blood tests to be included are:
antigliadin (AGA IgA and IgG antibodies)
anti-deamidated gliadin (DGP IgA and IgG antibodies)
anti-TG2 (TG2 IgA and IgG antibodies)

If the above are all negative, then additionally test for:
anti-TG6 (TG6 IgA and IgG antibodies... not widely available yet)
HLA DQ2 or DQ8 varients.

Quote:"In practice, it is best to do serological tests for both IgA and IgG autoantibodies to TG2 (and, if available, anti-TG6 and anti-TG3) as well as antibodies to gliadin and DGPs."

If any of the tests for gliadin, deamidated gliadin, TG2, or TG6 are positive (IgA or IgG antibodies), or HLA DQ2 or HLA DQ8 are present, then the recommendation is to proceed to biopsy.

If there is enteropathy > strict gluten free diet is warranted. If there is no enteropathy, testing for IgA deposits against TG on the biopsy should be performed (limited availability, done mostly in research so far). If deposits are found > strict gluten free diet is warranted.

Quote:Anti-TG2 antibodies are deposited in the small bowel mucosa of patients with gluten sensitivity, even in the absence of enteropathy. Furthermore, such deposits have been found in extraintestinal sites, such as muscle and liver. Widespread deposition of transglutaminase antibodies has also been found around blood vessels of the brain in patients with gluten ataxia.

In the case of an uncertain diagnosis, consideration should be given to offering strict gluten free diet particularly if there is no other aetiology and it is a progressive disease. Of note, improvement or stabilization does not occur until after a year of strict gluten free diet with serological elimination of antibodies.

SO... Hadjviassiliou's team recommends BOTH the original antigliadin antibody AND the newer anti-deamidated antibody (both IgG and IgA classes). I am happy to have this clarification and direction!

More specifically, they say this:
Quote:
"Detection of antibodies to deamidated gliadin peptides (DGP) is more specific for detection of coeliac disease than are classic AGA assays. However, unlike autoantibodies to TG2, anti-DGP antibodies can be either IgA or IgG class and not all patients have both. IgG anti-DGP has been reported to have 100% positive predictive value in adults and should therefore be included in the analysis. At present, whether these assays are similarly sensitive for detection of neurological manifestations of gluten sensitivity is not known. Recent evidence suggests that anti-DGP antibodies might be present in only 26% of patients with gluten sensitivity who are negative for TG2 IgA. This finding is consistent with our observation of detectable anti-DGP IgA/IgG in only 25% of patients with ataxia without enteropathy who test positive for autoantibdoies to one or more transglutaminase isozymes.

They also note that IgG class antibodies to TG2 or TG6 are more common than IgA class antibodies in patients with gluten related neurological disease, in contrast to celiac disease where IgA class antbodies are more common.

Quote:IgG class antibodies are present in only 60% of patients with coeliac disease, whereas the occurrence was 90% in patients with gluten ataxia who were positive for anti-transglutaminase. This shift from IgA to IgG might reflect the target organ involved (cerebellum rather than small bowel).

Thanks Cara! I'll have to take a few days to read through the links on your responses. Quick question though... what are the genes I carry? I don't know how to read that from the results from Enterolab - are they DQ3 & DQ1? What is tha Allele 1 0301 an Allele 2 0602??


Here's a quick back story, that I probably should have included. (I'll prepare you know, it's not that quick.)

I was diagnosed with PCOS in 2002 and have been trying, unsuccessfully to get pregnant since then. Because of the PCOS (or so I thought), I've had a really hard time losing weight. I tried Weight Watchers, Quick Weight Loss, the extreme HMR Program and even a 2-month boot camp monitored by a nutritionist where I gained 20 pounds. I would always do well on the program for the first few weeks, but by the 4-5 week, my body would be screaming at me!! I was very tired on these programs, my body didn't seem right, and I was still getting headaches. But I thought it was me giving up. The only program I felt good on was the Marilu Henner Total Heath Makeover program - I know, she's an actress. She condones a No dairy, no sugar, no alcohol, no sugar and no red meat (and no processed food) lifestyle.

To this day my husband still comments about that experiment 7 years ago... that I looked my best: I had life in my eyes again, I had lots of energy, and my face cleared up. Not realizing why her program made me feel so much better, when life got in the way I didn't stick with it.

Anyway, as the years went by I had suspicions that I had a dairy allergy - I started thinking back and realized that as a child, I was always sicker than my brother. I was the child who came down with ear infections, colds, stomach bugs, and strep throat. Things started getting a little worse for me health wise when I was around 17. I started getting sinus infections and bronchitis about 2-3 times a year, then came the viral infections, and even H1N1 this past year. I suffered 7 broken bones since then (all fluke incidents, but none than less, I wondered if they would have happened to anyone else - and to note I never had a broken bone until I was 17).

My menstrual cycle was never regular... Once or twice a year I'd have to take progesterone to get my cycle to start because it would go longer than 3 months without one. (Again, I attributed soley to the PCOS) And I also suffered from this "knife stabbing" pain in my left side (about 1/4 up from the hip area). My quack doctor ordered a sonogram to check my ovary (nothing then), and ordered a flax-sig (useless procedure) and then declared... "huh. I don't know what it is, it's one of those pains you'll just have to live with". And I did - I was 17 and didn't know what else to do. NOTE: Whenever I cut out dairy (which means I was also cutting out most gluten products because they almost always go hand in hand with ingredients) I would start my cycle within 2 weeks - EVERY time.

Anyway, that all brings me back to about 2 years ago. I got a mild sunburn on my face (and I mean mild), but this time it caused a reaction I have never had in my life! Along my scalp line I developed what my dermatologist diagnosed as psoriasis (no history) - it was very scabby, itchy, red, and oozy. And it spread to the area around my eyes, and mouth.

That caused me to start researching more of a WHY reason to my health issue and not a what medication can I take to help with my symptoms approach. During this time, I also started to notice that I felt like I was getting a sinus infection after eating a cheeseburger, that I felt extremely tired after eating while my friends would have a burst of energy, that my nose would itch after eating, and that I was experiencing some big ADD and brain fog moments every day - getting worse.

During my research I stumbled on the fact that an OB/GYN (can't remember her name right now) tested all of her PCOS patients for gluten sensitivity and that 80% tested positive. That was a HUGE number for me. So I brought my evidence to my fertility doctor, my OB/GYN, and my PCP, and they all agreed.

Unfortunately, none of them had the resources, or the knowledge for me to be tested (except the blood test for celiac and the allergy prick test, which I didd). So reading The Gluten Connection, and finding a nutritionist, I discovered Enterolab and had myself tested. You saw the results. I never thought I had Celiac, but I knew something else was going on. And the results confirmed more than I thought - including not only the casein, but the gluten and surprise, the soy!

But 18 months later, I am finally starting to get back on a GF/CF/SF program. I have been able to stay on a strict program for about 30 days when "life" would happen and I would go off... of course when I would, I started experiencing stabbing knife pains in my stomach, really bad headaches, mood swings and would get very very tired - all within 30 minutes of the offending meal. But a GI doctor called me "delusional" (yes, that was his word) about a year ago, so I am only now believing in my results again.

And just want to know more... The GI doctor was my mothers GI doctor and neither she nor my father think I have problems. But oddly enough, I carry 2 genes, passed down from each of them, and my Mom has a whole list of autoimmune issues for herself (epilepsy, brain tumors, had ulcerative colitis / proctitis, gets sick easily, and breast cancer) - and there are more in the family (dairy allergies, autism, another family member with brain issues, Crohns on both sides, cancer rampant, etc).

Sorry... that's my long story (not very quick). So, I was trying to figure out what my results meant, what genes I carried so I could better understand and link my symptoms. I am back on my program - 7 days clean and I'm doing research again. Knowing the more I know about this, the better my doctors can help me, and the better informed I'll be about what is happening when I ingest this stuff.

Thanks again... I'll read through those links.

PCOS patients may do well on Metformin. This however has GI side effects, and also may lower B12 levels. But some women lose weight on this and also become pregnant (if that is what they are trying for)

An alternative to this is a natural supplement called d-chiro inositol. This normalizes the metabolism of glucose and will also result in pregnancy in previously infertile women.

If you weigh over 130 lbs you need 1200mg a day. Weigh less and use 600mg a day.

Here is their website:
https://www.chiralbalance.com/store/index

I've been using this product for about a year now, with good results on my blood glucose. (I am long past child bearing--but this product is also good for insulin resistance. I had PCOS many years ago. One nice side effect of this supplement is a reduction of facial hair, which is caused by androgens that are at high levels in PCOS patients).

The price has come down quite a lot since last Feb when it was $89 a bottle for 60.

Thanks MsD! I'll look into the D-Chiro-Inositol site. I've tried Metformin several times in the past, and although I didn't have the same GI issues that other people experienced, it didn't help in any way. My cycles didn't improve, nor did my other symptoms.

Oddly enough, the bloodwork I've had done over the past year didn't indicate that I was having insulin resistant problems (though in past tests it has shown I was insulin resistant at that time)... they even tested for diabetes, and thyroid issues just to be sure the symptoms I've had recently weren't being attributed to either of those.

Once I found the link of Gluten Intolerance to PCOS, and found out that I was in fact intolerant to gluten, soy and casein, it made sense that I could bring on my cycle just by eliminating the bad foods / food groups. I'm going to give my body 6 months of healing on a strict GFCFSF food plan, take my prenatal (that's also GFCFSF), start increasing my exercise / strength training load - and if this doesn't work, then at least my body will be much healthier to carry a pregnancy.

As a note: Last August I was on a strict GFCFSF diet, had my cycle, ovulated, and about a week or so later fell off the wagon with my food because of major work issues (layoffs being announced and all)... needless to say, I had the worst period I have ever had in my life. The pain, the clotting, and everything seems to be associated to the fact that I interrupted the process of holding a pregnancy. I fully believe in my heart that had I continued to stay plan, I would be pregnant today. My body is reacting to the restriction in these food groups as I've never seen it react (in a very positive way).

AGAIN... THANKS FOR YOUR INPUT!! I'm finding LOTS of useful information here!!!

I am glad you found us here. The information on this Gluten forum is the best!

In regards to the insulin resistance... I think the most telling test is fasting INSULIN. This will be elevated for quite some time before the fasting glucose changes.

Be careful if you have it done, and not do any physical exercise before the test...be a slug, for the best accuracy. No jogging, running or swimming before they draw the blood.

Yes, you are DQ3 and DQ1. There are naming differences between blood test and cheek swab ways of doing the HLA testing, and translating between the two can get somewhat confusing. And, apparently, the naming has morphed some over time. I've been heavy in the gluten sensivity 'business' for a decade now, and can tell you the genetic jibberish is something I just try not to think about. Seriously, all the letters and numbers, variants, changes in nomenclature, etc, are something I've just never gotten a handle on... and just avoid rather than try.

The bottom line is those with HLA DQ2 and HLA DQ8 are predisposed to celiac disease/ villous atrophy. You don't have either of those, so it is unlikely you will ever test positive for anti-tTG2 or show villous atrophy on biopsy. That is all it means. Celiac disease is just one of many ways gluten sensitivity can manifest.

People without those main celiac genetic types can certainly be gluten sensitive, and it can manifest in both gut and nongut symptoms (but not villous atrophy). My daughter had GI, skin and neurological symptoms did not have the main celiac genes, but did have double copies of HLA DQ1. I also have double copies of HLA DQ1. My daughter tested positive for antigliadin IgG, but I didn't.

Don't get bogged down in the difference between the antigliadin antibody and deamidated gliadin antibody. Just skip all that as it really isn't important for you. It just explains some of quirks in current testing methods. The antibody testing and subsequent pitfalls and loop holes have gotten ridiculously more complicated with the addition of each "new" test they come up with.

Antigliadin IgG (not run on your) would have been the best of the blood tests available to show non-celiac gluten sensitivity, but your results from Enterolab should be trusted. The stool testing is even more sensitive than antigliadin IgG. I know many, many, many, people who are better today based upon trusting the results of those tests.


This is the explanation on genetics given by Dr. Fine on the Enterolab website Q&A page. Does it help ? It does and it doesn't. The genetics, in the end, don't mean that much because nearly every genetic type is susceptible to non-celiac gluten sensitivity.

Quote:

Why are gene results so complicated, and which genes predispose to gluten sensitivity/celiac sprue? Gene tests for gluten sensitivity, and other immune reactions are HLA (human leukocyte antigen), specifically HLA-DQ, and even more specifically, HLA-DQB1. The nomenclature for reporting HLA gene results has evolved over the last two decades as technology has advanced. Even though the latest technology (and the one we employ at EnteroLab for gene testing) involves sophisticated molecular analysis of the DNA itself, the commonly used terminology for these genes in the celiac literature (lay and medical) reflects past, less specific, blood cell-based (serologic) antigenic methodology. Thus, we report this older "serologic" type (represented by the numbers 1-4, e.g., DQ1, DQ2, DQ3, or DQ4), in addition to the integeric subtypes of these oldest integeric types (DQ5 or DQ6 as subtypes of DQ1; and DQ7, DQ8, and DQ9 as subtypes of DQ3). The molecular nomenclature employs 4 or more integers accounting together for a molecular allele indicated by the formula 0yxx, where y is 2 for DQ2, 3 for any subtype of DQ3, 4 for DQ4, 5 for DQ5, or 6 for DQ6. The x's (which commonly are indicated by 2 more numbers but can be subtyped further with more sophisticated DNA employed methods) are other numbers indicating the more specific sub-subtypes of DQ2, DQ3 (beyond 7, 8, and 9), DQ4, DQ5, and DQ6. It should be noted that although the older serologic nomenclature is less specific in the sense of defining fewer different types, in some ways it is the best expression of these genes because it is the protein structure on the cells (as determined by the serologic typing) that determines the gene's biologic action such that genes with the same serologic type function biologically almost identically. Thus, HLA-DQ3 subtype 8 (one of the main celiac genes) acts almost identically in the body as HLA-DQ3 subtype 7, 9, or other DQ3 sub-subtypes. Having said all this, it should be reiterated that gluten sensitivity underlies the development of celiac sprue. In this regard, it seems that in having DQ2 or DQ3 subtype 8 (or simply DQ8) are the two main HLA-DQ genes that account for the villous atrophy accompanying gluten sensitivity (in America, 90% of celiacs have DQ2 [a more Northern European Caucasian gene], and 9% have DQ8 [a more southern European/Mediterranean Caucasian gene], with only 1% or less usually having DQ1 or DQ3). However, it seems for gluten sensitivity to result in celiac sprue (i.e., result in villous atrophy of small intestine), it requires at least 2 other genes also. Thus, not everyone with DQ2 or DQ8 get the villous atrophy of celiac disease. However, my hypothesis is that everyone with these genes will present gluten to the immune system for reaction, i.e., will be gluten sensitive. My and other published research has shown that DQ1 and DQ3 also predispose to gluten sensitivity, and certain gluten-related diseases (microscopic colitis for DQ1,3 in my research and gluten ataxia for DQ1 by another researcher). And according to my more recent research, when DQ1,1 or DQ3,3 are present together, the reactions are even stronger than having one of these genes alone (like DQ2,2, DQ2,8, or DQ8,8 can portend a more severe form of celiac disease). https://www.enterolab.com/StaticPage...rpretation.htm

You medical history screams gluten sensitivity. And, it so happens, that 50% of those with gluten sensitivity also have casein sensitivity. No surprise. Soy and corn round out the top four. Absolutely .... stick with a gf/cf/sf diet. It's a common trio... you are not alone. Corn has a pretty nasty reputation, and although we haven't scratched it entirely yet in my family, I'm on board in concept and am trying harder to avoid it. Don't make the mistake of using more corn products as a substitute for wheat. If anything, decrease or eliminate corn.

I've also read a lot about PCOS and gluten sensitivity, infertility/miscarriage and gluten sensitivity, and heavy/ painful/ irregular periods and gluten sensitivity... including success stories w/ positive outcomes with gluten free diet.

Here is some info on infertility/ miscarriage:
http://jccglutenfree.googlepages.com...ndmiscarriage2

Good luck! Stick with it!

yes, yes, yes. If you've read the Gluten Connection you probably realize how these may all be related to gluten/casein sensitivity. Most of this is covered in The Gluten File, too. Good for you to figure this out for yourself and your future generations . It can be a tough task to enlighten other family members, particularly the older generations, but even siblings and children can be a challenge.

For now, focus on yourself and use Internet groups like this and others for the support you might not get from family or friends. Even many doctors are now blogging about gluten sensitivity, and are putting up facebook pages, etc. I have some of them listed on the gluten sensitivity vs. celiac disease page of The Gluten File. The more you continue to read and search, the more supported you will feel. You are on the right track.

DQ7 (=0301) usually have the 05* alpha chain, which essentially is half a DQ2 celiac gene. enterolab does not test for alpha chains.

For explanations and charts, read up on the HLA DQ page at en.wikipedia.org