Entero Lab Results

[Sheila]

This is quite depressing.

Test B
Fecal Anti-gliadin IgA 245 Units (Normal Range less than 10 Units)
Fecal Anti-casein (cow's milk) IgA 38 Units (Normal Range is less than 19 Units)
Fecal Anti-ovalbumin (chicken egg ) IgA 15 Units (Normal range is less than 10 Units)
Fecal Anti-soy IgA 16 Units (Normal range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201
HLA-DQB1 Molecular analysis, Allele 2 0501

The interpretation of the gene test reveals that I have one of the main genes that predisposes to gluten sensitivity and celiac sprue. I also have a gene that predisposes me to gluten sensitivity.

Serologic equivalent HLA-DQ 2,1 (Subtype 2,5)
I've been GF for a while now and am okay with it at this point, not happy but okay. I'm shocked at the rest of it and in denial. Not surprised by the genetic test since my mother had CC and my youngest son has sure signs of it. I have never noticed a problem when eating eggs, soy, Boca burgers. I know I'm lactose intolerant and really not happy about that casein intolerance. I LOVE cheese. Could the other numbers be high because of the inflammation from this big flare and I'm just showing sensitivity to everything? Help, Tex and my other wonderful Potty People!! Please tell me what the Hell this means.
Thank you.

[Zizzle]

Oh Sheila, I'm sorry. Welcome to the DQ2 club. I tested in the teens for soy and can tolerate small amounts of soybean oil, GF soy sauce (it's fermented and hydrolyzed) and small amounts of soy lecithin (in dark chocolate). I tested in the teens for dairy, and I am DEFINITELY intolerant to casein in all forms. I miss cheese too. The dairy reactions became more evident once I had gluten out of my system, presumably because the immune system was refreshed and ready to do battle against the next foe. Bummer about the eggs too!! I suppose you can cut them all out for a couple of weeks and try reintroducing them one by one to confirm the results.

[Ginny]

Sheila, it is a bummer! I am not a DQ2 but had very high scores. Give yourself time to adjust to the results and then try to put a plan together that does not include any of your intolerances. Dee has lots of recipes to try and wonderful suggestions for substitutes. Try not to get overwhelmed; easier said than done, but take each day as it comes. Some of us with multiple intolerances, rotate our foods and we use grain alternatives; Buckwheat, Quinoa, and Amaranth. I found that I can tolerate Silk's Pure Almond milk.

Anyhow, I know how you feel and so do many others on this board!

Ginny

[Polly]

Hi Sheila,

As one of the "Queens of Sensitivities" around here, you have my deepest sympathy. I truly understand how you feel. Unfortunately, Dr. Fine's tests show that you have specific antibodies to all of the foods tested - those antibodies are not the result of "generalized" inflammation or sensitivity (although I know how much you wish they were.) In order to control your MC with diet alone, you will most likely have to avoid all of your sensitive foods. I wish it weren't true......... Take your time as you plan how best to incorporate these results into your lifestyle.

With so many sensitivities, you might wish to read L. Cordain's book on the "Paleo Diet" . The more sensitivities, the more difficult it is to find commercial foods that are safe, and it may be easier just to start with whole, pure foods like the paleo diet recommends.

Best of luck, and feel free to rant and rave all you want. There is a real grief process that happens when one is forced to make major changes to diet. The good news is that "information is power" so that you now have some tools to find the path back to health.

Hugs,

Polly

[tex]

Sheila,

I have to agree with Polly - there's really not much leeway to argue with those results. A result of 10, 11, or 12, can sometimes be iffy, but all of your results seem high enough that the risk of one or more of them being a false positive result, is mighty slim, unfortunately.

I notice that your genes are identical to mine, (FWIW). I was much more fortunate though - I had to avoid all those foods and more, (except for eggs), while recovering, but once my gut healed, I was no longer sensitive to casein, soy, etc. Unfortunately, I was unaware of the Enterolab tests before I started the diet, so I have no idea how I would have tested, early on.

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

Thanks,
Tex

[mbeezie]

Sheila,

I feel your pain. I remember when I got my results back (both MRT and enterolab). It's hard to wrap your mind around it at first but it gets easier over time. Like Polly, I have more sensitivities than you can shake a stick out so I know how you feel.

Since you have DQ2 and such a high result for gluten, I am wondering if you aren't truly celiac. Dr. Fine said that when numbers get close to 300 people are almost always celiac. Either way, a gluten free diet is needed.

We are here for you to vent. We've all been there and will help you through the process of figuring out your new way of eating.

Hugs,

Mary Beth

[sarkin]

Sheila,

I'm another DQ2 club member - I had different numbers, but like yours, they left no doubt. For me, eggs were the big shocker. I had really been relying heavily on eggs, esp. for breakfast, once I knocked out grains and dairy (I'll meet you gals in the cheese aisle for a pity party - the cheese man called out "get a second opinion!" as I walked by today in the super-supermarket).

I am dreaming of getting eggs back "some day" but don't plan to try them for a long time. I would cite Tex as an example, except that as he says, he didn't have the Enterolab numbers before/after for comparison. I think that's just my fake promise to myself.

Take your time processing this info - I was reeling for days, even though I knew. And then I hope you feel better very quickly. I can tell you that dropping eggs did make me feel better... I hope you get that reward soon, to make up for the "shock and awe" of your results.

Tex, it is amazing how widely our numbers range (from 11 to over 500). It doesn't seem to correlate with specific genetics, or severity of symptoms, or number of intolerances quite as much as I had expected (not that I have attempted those correlations other than by browsing and pondering). My soy number was in the normal range, but on the high end (8 or 9) - since I had been avoiding soy for a few months out of desperation to feel better, I decided to keep avoiding it, just in case my antibodies had declined just enough to put me in the safe range - but not enough to be safe. When I hit some big milestone of symptom-free months, I think I'll relax my vigilance for soy lecithin and see how it goes.

Ginny & Polly - I believe some of us "medium-new" kids (me, for sure) don't know for sure yet whether the next intolerance is about to pop up or when. It's good to have you guys ahead down this path. We hope not to lose additional foods to newly discovered sensitivity, it's good to know that it's possible to keep going. I read a quote recently from EL Doctorow: “writing a novel is like driving a car at night. You can only see as far as your headlights, but you can make the whole trip that way.” MC certainly demands a lot of creative endeavor (marathon variety, not sprint).

Mary Beth - I think I, too, might well be truly celiac. They idea that they should wait for folks with the symptoms and genetics to have villous atrophy and additional AI diseases before they diagnose it.... is nuts. I'm figuring I'm as celiac as I need to be for purposes of eating and meal planning. I hope I never "succeed" at getting diagnosed.

I'm with you guys for the long haul,

Sara

[Gloria]

Sheila,

I still remember how devastated I felt when I received my Enterolab results. I expected to be gluten-intolerant, but nothing else. It's very difficult to accept at first. It will get better, but right now, you are not unusual in grieving and hoping the results are suspect.

We are here to help you, and we have a great deal of experience to help you through the bumps in the road.

Feel free to vent; sometimes it feels like that's the only thing we can do.

Gloria

[Sheila]

Thanks, everybody. I think I'm in shock. Chocolate???? I can't think of anything right now that I would want to eat that doesn't have at least one of those food items included.

Of course, you can add my test results to the rest, Tex.

Is entocort, I'm taking 1 a day, protecting me now when I eat eggs, soy or milk products? I've been eating some chocolate almost every day and have no problems at all. The S-O ice cream did give me gas and stomach pains but that is the only thing that has caused a problem.

Thanks, everybody. I guess DQ2 means a double gluten intolerance gene, including the 1 for celiac. It's too late at night to start drinking but I may start tomorrow!!!!

[Gloria]

Sheila,

You may still be able to eat chocolate, as long as it doesn't have soy lethicin. Enjoy Life makes chocolate chips which are free of all common intolerances. When I used to eat chocolate, I would melt the chips and pour the chocolate into Wilton candy molds. I'd refrigerate them and then put the chocolate into a plastic bag in the fridge. Chocolate was the hardest food I've had to give up because, like you, I ate it every day. Very few here have had to completely give up chocolate, and you probably won't, either.

Gloria

[Zizzle]

Sheila,
If you have a Trader Joe's nearby, they have a number if excellent GF/DF/SF/EF products, especially their Organic Dark Chocolate Truffle bars, and chocolate sorbet. You can still have chocolate!...unless you discover cocoa itself is bothering you too...which makes for a very sad day indeed.

[mbeezie]

Sara,

Like you I had an enterolab soy value of 9, but I knew I reacted to it. The mystery cleared up when I did MRT . . . I was RED reactive to soy lecithin. So it may very well be that you are also sensitive to lecithin.

I love chocolate like most people but since it is on the avoid list for the low histamine diet I only sneak a bite or 2 every now and then.

Mary Beth