Enterolab results are in! (Sara, we guessed wrong...)

[draperygoddess]

FINALLY, FINALLY got my lab results this morning. Here they are:

B) Gluten/Antigenic Food Sensitivity Stool/Gene Panel
Fecal Anti-gliadin IgA 16 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 9 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 7 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 9 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0602

HLA-DQB1 Molecular analysis, Allele 2 0609

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


So, Sara, we are not long-lost cousins as we thought: I don't carry a celiac gene. Of course, that doesn't mean I'm out of the woods, but at least I know it's not celiac. This does, however, guarantee that my kids got at least one GS gene. I'm still thinking of having them go GF in January and see what happens.

I did think it interesting that I tested negative for casein. Of course, by the time I did the test, I had been basically dairy-free and soy-free (except for soy lecithin) for close to 3 months, which might indicate that I would have tested positive a few months before, I don't know. The soy result was the same as casein, which I also found interesting. I think that I will cut out all soy (goodbye, creamer! ) after the holidays and see if I notice any difference.

By the way, we had a WONDERFUL time on the Disney cruise! The servers were so nice about my food issues--they brought me a menu after dinner every night so I could pre-order for the next day. I even got to pre-order my lunch at our port-of-call, and it was ready and HOT when I got there! Highly recommend it to anyone who wants to take a cruise and not worry about being sick the whole time!

Tex, feel free to add my results to your growing collection!

[Gloria]

Cynthia,

Wow, those look like pretty good results! You're a double DQ1 who doesn't seem to have many intolerances. That's very unusual. Eggs are still on your menu, too. Terrific!

Gloria

[sarkin]

Congratulations, Cynthia! (Maybe we're newfound cousins??)

My soy result was also 9, coincidentally - I also took that to mean that it might have been higher, as I'd been legume-free for 2 months, soy-free for 3 by the time I tested.

That's great news, about Disney. They are *amazing* at customer care. I called my boss once from a conference I attended, onsite on Orlando, and said - "if only our company did *anything* as well as Disney does *everything*!"

Maybe not having a celiac gene buys you a little more time to tweak things with your kids, though I think in the long run, there must be many factors other than yes/no on the celiac-gene question to explain why some of us get hammered with symptoms, and others do not - or not until much older. I know it's hard to impose dietary restrictions on kids who are exposed to so many temptations at birthday parties, but in some ways I wish I'd been gluten free from a young age. I never would have had to unlearn a whole way of eating, shopping, cooking... My friend with the GF/DF/SF/*F kids - one kid had two genes, and the other had the *other* two.

I'm sorry about your creamer. The So Delicious brand doesn't contain soy - but you still have to adjust your tastebuds. I think it's a good call not trying to make yet another change in the middle of this busy season - since you're not feeling dreadful. And maybe soy will be something you can have occasionally in certain forms - maybe a little soy lecithin doesn't need to be a deal-breaker for you. I feel as though I'll understand a lot more in another year or two... but we have to eat every day!

Thanks for sharing this update - cousin!

xox/S

[nancyl]

Cynthia,
Good news about your Enterolab results. Hopefully you'll kick this disease in the butt sooner than later.

I'm glad you shared the cruise information. We will be leaving on a 13 day cruise in April with Celebrity. Hopefully, I will get the same good treatment.

Nancy

[Kari]

Cynthia,

Glad your wait is finally over and that your results are pretty good to boot!!! However, I agree with your analysis of the casein and soy results - it's a strong possibility that you would have tested positive a few months ago:(. As you heal more and feel that things are under control, you may want to do a casein test, but after what I just went through, I would caution you to be very careful.

Glad to hear you enjoyed the cruise - sounds like your experience was similar to mine. It makes sense that pleasing people with their food service would be a high priority on a cruise.

Love,
Kari

[draperygoddess]

Hey, I've been looking at the test results posted on the forum, and I didn't see anyone else with a 6.9. I researched it, and apparently it's usually found in people of African or Asian descent--almost never in those with European roots. Anybody else out there carry the same gene? I'm a family history buff, and though I have some Native American blood, I haven't found any Middle Eastern, African, Asian or Mediterranean background.

Also, who else is a double DQ1? I know Gloria and Polly are...truly thankful I don't have so many intolerances!!

[Lesley]

Your results seem to be pretty good, AND you had a good time. I am so glad for you!

[tex]

Cynthia,

I agree with Gloria - you have a very unusual genetic profile. With a double DQ1 situation, I wonder if the soy and dairy results could be false negatives.

Do you mind if I add your results to our collection?

Thanks,
Tex

[draperygoddess]

Tex,

I am positive I'm sensitive to casein, test result or not. And THAT makes me think the soy result is suspect as well. I haven't been doing much soy, but haven't completely ruled it out, either. I'm hoping that more food sensitivities don't show up in time!

Please feel free to add my results!

[Deb]

Cynthia, I'm a double DQ1 too and have (so far) not had a lot of sensitivities. I'm hopeful that it helped I was diagnosed quickly and went gluten-free shortly thereafter.

[draperygoddess]

Deb,

I do wonder if there's a correlation between the age (or duration of symptoms) at diagnosis and the number of sensitivities. Thinking about doing a poll on that one...

[Robin]

Hi Cynthia,

Congrats on your test results. I am jealous! I haven't done the gene testing yet but plan on it after the holidays, especially since receiving my food allergy sensitivity part.

I am wondering if you think you have a food sensitivity to casein and it didn't show up on your results, then could they have read my wrong for the sensitivity they think I have to chicken that I don't think I have. (Did that makes sense)! I do know that I am going to do the MRT also after the holidays because I still don't feel right. I am on Entocort and Asacol and still somedays have the D. So I have no idea anymore.

I am so glad you had a wonderful time on your cruise. That Disney Cruise is awesome. I went on it about 5 years ago and we had a blast.

[draperygoddess]

Robin,

My reasoning for the casein test is that, by the time I had the test done, I had been DF for nearly 3 months. I know I have a violent reaction to casein (challenged it with a piece of cheese and got spectacular--not in a good way--results), but my Enterolab test showed a 9. So, I think maybe if I had done the test while I was still eating dairy, it might have been a 10 or higher, and cutting it out of my diet has allowed the antibodies to deplete somewhat. It seems to me that it would be much more likely to get a false-negative than a false-positive. In the end, though, the best indicator of whether or not a food is a problem for us is going to be our own symptoms. So whether the test shows I have a casein intolerance or not, if it makes me sick when I eat it, I will count that as a food intolerance.

As I recall, you did the expanded food panel, which doesn't give you numbers, just a range of sensitivity. So I don't know what the possibilities are for a false-positive with that one. All in all, I'd bet your experience is the best indicator. I know there is SOMETHING in corn chips and tostadas that I'm reacting to, but i can't put my finger on it (it's not something obvious, and I know I can eat corn in other forms). So even though the label says there's nothing in there that could be making me sick, I'm staying away from them. It all goes back to the food diary!

[tex]

I am on Entocort and Asacol and still somedays have the D. So I have no idea anymore.

Many of us cannot tolerate Asacol, (or any of the mesalamine-based meds), because mesalamine is a derivative of salicylic acid, making it a close relative of NSAIDs. Dr. Fine described, over a dozen years ago, in the New England Journal of Medicine, why so many of us react adversely to mesalamine - it stimulates the production of leukotrienes, similar to NSAIDs:

Although mesalamine inhibits both lipoxygenase and cyclooxygenase in vitro (and should decrease the production of both leukotrienes and prostaglandins), clinical manifestations and results of fecal eicosanoid analysis in our patient suggest that this drug may stimulate leukotriene synthesis as do analgesic NSAIDs and, in turn, lead to diarrhea or intestinal inflammation (or both) in patients with inflammatory bowel disease.4,5

http://www.nejm.org/doi/full/10.1056/NE ... 3263381320

IOW, as I always recommend, if someone is taking Entocort, Asacol cannot help, (because it's redundant), but it can certainly undo some or all of the benefits of the Entocort. Therefore, taking them together can be counterproductive.

Regarding Cynthia's test results for casein, antibodies for all food-sensitivities other than gluten, fade rather quickly, (they have a half-life of only about 5 or 6 days, so it's not surprising that after 3 months, the level would be below the threshold for triggering a positive test result. If I recall correctly, Dr. Fine recommends not removing casein from the diet more than a few weeks prior to taking a test sample, for that reason. Anti-gliadin antibodies have a much longer half-life, and they can be reliably detected in the Enterolab stool tests for over a year after gluten is removed from the diet.

Another consideration is the analytical methods used to establish a cutoff point for ELISA test results, when the test kits are calibrated. Responses follow the familiar "Bell" curve, meaning that there will always exist a statistical possibility of false positive results, and a few false negatives. IOW, the closer that the test result is to the cutoff point, (10), the higher the risk of a false determination. Also, Cynthia is apparently correct in her opinion that a false negative result is more likely than a false positive result. Dr. Fine's stated cutoff point is listed at plus 2 standard deviations, meaning that approximately a 5% rate of false positives is possible. However, a much higher rate of false negatives is possible, and one of our members, who is experienced in similar lab work, did some statistical analysis calculations, based on the test results listed in our "collection", (at the time), which verified that possibility. IOW, these tests are more accurate and reliable than any other testing method available, but they're not perfect, because perfect tests do not exist in the real world.

Love,
Tex

[draperygoddess]

Tex,

Thanks--that made more sense than how I was trying to explain it!