It's NOT all in my head!

Deanna in CO · Post by **Deanna in CO** » Wed May 23, 2012 4:22 pm

Hi all!

My Enterolab results came back today (and yes, Tex, please feel free to post them). :) Can I just start by saying that even though in some ways it's bad news, it's nice to know this whole thing isn't all in my head? Quick reminder - I have been GF (and most other additives, sweeteners, etc.) since December 1 (6 months), DF since January 1 (except for a number of "accidents" early on - no accidents even since February 1 - 4 months), and EF/SF since March 1 (3 months). I did Panel B - the "Big Four" plus the genetic analysis - and here's what I got back:

Fecal Anti-gliadin IgA 34 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 32 Units (Normal Range is less than 10 Units) - This seems pretty high for as long as I've been DF. Or does dairy show up in these tests for as long as gluten does? Just wondering if somehow I'm getting cross-contaminated - I don't see how, because I'm extremely careful, but maybe I'm missing something.

Fecal Anti-ovalbumin (chicken egg) IgA 11 Units (Normal Range is less than 10 Units) - I THINK this is reasonably good news, if I understand it correctly. Because the level is only just over 10, even after only 3 months, does it mean the chances are reasonably good that at some point I may be able to eat egg occasionally, at least as an ingredient in say, gluten free bread? (Obviously I wouldn't expect to ever go back to eating 2 eggs every morning for breakfast, but once in a while, especially as an ingredient, it would be very helpful and add significant variety to my diet.)

Fecal Anti-soy IgA 5 Units (Normal Range is less than 10 Units) Note: I think this is VERY good news. Does this mean I can eat all the soy I want, or does it mean I can include it in my diet in moderation?

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0603

Serologic equivalent: HLA-DQ 3,1 (Subtype 9,6)

Most of us are familiar with the interpretations from having seen them, so I'll spare you the details except for the genetic interpretation:

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.

There! Proof positive that it's not just in my head. My dh is starting to say that we need to spend the $$ for either the 11-antigen Enterolab panel or the MRT testing after July 1; that's encouraging too. Wish I could get him to acknowledge that since my dd definitely has at least one GS gene, it might be wise for her to follow some precautions in terms of drugs, gluten, etc. Hopefully time and thought will be persuasive eventually.

And - given that my sister has chronic fatigue syndrome and significant thyroid trouble, and that she recently put her daughter (who probably has Asperger's Syndrome) on a GF diet and the daughter is doing much better, I'm guessing my parents passed on those genes to her as well.

Anyway, thanks everybody for your support through this process. I am MUCH happier having concrete results in my hands, especially when they contain a little bit of good news among the bad - when you're already eating GF/DF/EF/SF, it's good news if you can add even one thing back in, you know? This is especially true since I suspect I'm going to have to cut back on some other foods as I am not yet seeing the kind of results I want - some days are better than others, but I still have far too many rushed trips to the bathroom in a day, and no visits from Norman. So I am satisfied with the results.

Thanks again!

Deanna

Stanz · Post by **Stanz** » Wed May 23, 2012 4:35 pm

Your reaction to knowing is just about exactly what I said too. We share the 603 gene, as well as the anti-gliadin score, I'd been GF for 5 months when I sent in my sample.

Yeah, can completely identify with looking at family member similarities and health histories. One daughter and one grandson of mine both carry my 501 gene and another GS gene. Can't get anybody else to be tested even though it's pretty obvious within my family that it's rampant. Good for your DH for being so supportive, it makes a difference.

Connie

JFR · Post by **JFR** » Wed May 23, 2012 5:40 pm

Deanna - I understand how you feel. When I got my results not too long ago I felt confirmation for a lifetime of digestive struggle. I had long since decided that it was not all in my head but I had never had any test that suggested what was wrong and mostly I had given up trying to figure it out, just tried to figure out how to live with it, until it got so bad living with it wasn't an option unless I wanted to be a hermit. I am glad your husband is on board with this. After getting my results for the big 4 I decided I wanted to do the 11 antigens test too and I am glad I did. Now of course I want to do the MRT but I have run out of money and that will have to wait. What is so helpful about the Enterolab tests is that they do not just confirm that something is indeed wrong but they lead to a plan of action too.

Jean

brandy · Post by **brandy** » Wed May 23, 2012 6:14 pm

Hi Deanna,

My egg score was also an eleven. I'm not sure how Dr. Fine would interpret it or how Tex would interpret it but for me it is so close to a 10 that I'm kind of interpreting it as you are. For me that means I've been having egg as an ingredient of something else on occasion. That translates into occasionally having GF bread. I'm glad the tests were helpful. I found the food group one also to be helpful although I didn't get it until late in the game. Best wishes, Brandy

Post by **tex** » Wed May 23, 2012 6:24 pm

Hi Deanna,

I agree that after you are in remission, and some more healing takes place, you may be able to at least eat eggs in pastries.

It appears that you may be home free with soy. I tested negative to soy also, but I avoided it anyway, while I was recovering, just to be safe. These days, I don't eat soy, but I don't worry about trace amounts in vitamins and things of that sort.

Thanks -- I've added your results to the list.

Tex

brandy · Post by **brandy** » Wed May 23, 2012 6:50 pm

Hi Deanna,

Correction--my score was a 10 on egg for what it is worth. Brandy

Deanna in CO · Post by **Deanna in CO** » Wed May 23, 2012 9:29 pm

Thanks so much for the support!

Wayne/Tex, did you see my question about my results for dairy? I feel like my anti-casein level is pretty high for having been completely off dairy for 5 months. Do you know if dairy has a similar half-life to gluten, and if that might explain it? Or am I really that sensitive to dairy? Or is it more likely I'm still somehow getting cross-contamination (my family still eats lots of dairy)?

Thoughts?

Deanna

Gabes-Apg · Post by **Gabes-Apg** » Wed May 23, 2012 11:19 pm

Congrats on winning over your DH and getting the clarity to help you achieve wellness

hope things continue to improve

Gloria · Post by **Gloria** » Thu May 24, 2012 6:04 am

Deanna,

It's nice to have your intolerances verified by a test. It's also great news that you tested negative to soy. I hope the testing helps you achieve remission more quickly.

Gloria

Zizzle · Post by **Zizzle** » Thu May 24, 2012 7:51 am

Lucky you on the soy!! I tested 11 for soy, so I don't eat it in large quantities (like soy milk, tofu, or foods with soy flour), but I don't worry about small quantities of soy lecithin, soy oil, etc.

I'm also puzzled by your casein result. I would have expected it to be negative. Maybe you've gotten some accidentally? I just learned Harris Teeter just recalled all of its sorbet flavors because of undeclared milk protein. Who puts milk in sorbet??

Post by **tex** » Thu May 24, 2012 9:37 am

Deanna in CO wrote:Wayne/Tex, did you see my question about my results for dairy? I feel like my anti-casein level is pretty high for having been completely off dairy for 5 months. Do you know if dairy has a similar half-life to gluten, and if that might explain it? Or am I really that sensitive to dairy? Or is it more likely I'm still somehow getting cross-contamination (my family still eats lots of dairy)?

Thoughts?

Deanna

Hi Deanna,

Well, yes I noticed your question, but since I wasn't sure how to respond, I tried to ignore it.

Seriously -- I've been thinking about that apparent paradox, but I haven't quite sorted out all my thoughts, at this point.

Last fall, I decided to test casein (even though it doesn't seem to cause any GI symptoms for me), because I was seeing signs of minor osteoarthritis. So I made sure that for a couple of months or so I was getting a reliable, regular weekly (though not necessarily daily) dosage of casein. Just before I was ready to send a sample, though, I began to notice signs of gluten-sensitivity, so suspecting cross-contamination problems, I ordered tests for both gluten and casein.

Years ago, I had tested negative to egg, yeast, and soy antibodies at EnteroLab, but since I was already avoiding gluten and casein at the time, I didn't order gluten or casein testing, so I have no idea how the results might have turned out back then.

Anyway, my recent test results arrived about the first of the year, and the antibody levels were 62 for gluten

and 24 for casein.

According to Dr. Fine (and I agree with his logic), the magnitude of the test result numbers don't necessarily reflect the level of sensitivity so much as the length of time that we have been reacting. This is because continued exposure to an antigen causes the immune system to continue to pump out antibodies, so the antibody levels continue to rise. The higher the levels, the longer it takes for them to decay after the food is withdrawn from the diet. IOW, my results suggested that I had been getting somewhat regular traces of gluten contamination for an extended period. On the other hand, prior to the challenge, I only occasionally ingested casein.

However, since I was asymptomatic to casein (casein causes no GI symptoms for me, and the osteoarthritis may have been due to the low-level gluten exposure), in view of the results, I just assumed that I had developed a tolerance for casein.

Now, in view of your results, I'm not so sure. Anti-gliadin antibodies have a relatively long half-life. As you are aware, anti-casein antibodies (and virtually all other food-based antibodies) have a half-life that is only a relatively small fraction of the half-life of anti-gliadin antibodies. Therefore, anti-casein antibody levels should decay at a much, much faster rate, and like you, I would have thought that after 5 months on the diet, your anti-casein antibodies should be below the threshold at which a positive test result would be triggered (unless, of course, you're still exposed to trace amounts of casein in your diet).

So now I wonder if exposure to gluten may induce pseudo-casein sensitivity due to molecular mimicry (for some of us).

I hope I don't go broke doing tests, but I'm inclined to try to track this down. I'm seriously considering doing a series of tests and trials, to try to determine if a connection exists. Of course, first, my anti-gliadin antibody level will need to settle down, and that will take a while, even on a perfect diet. That also means that I'll have to test for both types of antibodies, each time I do a trial (casein challenge).

I may see where my levels are in a month or so (at the 6 month point). My casein antibody test level will have to be negative before there is any point in doing another casein challenge, but I'm guessing that my casein test may always be positive, if the anti-gliadin test result is positive.

We'll see. The problem is that I'm not sure that it's even possible to get a negative anti-gliadin test result, because it's so easy to be exposed to trace amounts of gluten these days, and every exposure will kick the test level up again, requiring a relatively long (many months to years) period of decay before the level will be below the threshold for a positive test result.

Sorry, this isn't a very good answer to your question, but these are uncharted waters. I reckon I'll be a guinea pig for a few years, to see where this might lead us.

Tex

carolm · Post by **carolm** » Thu May 24, 2012 7:40 pm

Hi all,
My casein results were at a level 16 on Enterolab tests, yet I had been dairy free for 4 months. I also expected it to be low but apparently that wasn't the case. The idea of molecular mimicry is very thought provoking.

You know Deanna, I'm thinking that if this was all in our heads it would be much easier to fix, IMO. I'm glad you have more information to move forward now.

Carol