my Enterolab results

patc73 · Post by **patc73** » Thu Jun 30, 2011 5:32 pm

I've just received back my test results from Enterolab and Dr. Fine:

Final Laboratory Report

Date: 6/30/2011

Name: Castrejon, Patricia
DOB: 11/30/1955

B) Gluten/Antigenic Food Sensitivity Stool/Gene Panel
Fecal Anti-gliadin IgA 7 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 8 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 6 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 5 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)

Basically, I have two copies of a gene that predisposes me to gluten sensitivity, although the anti-gliadin, casein, ovalbumin, and soy are within normal range. Based on that information and the experience of the people here on the MC Forum, should I continue to avoid gluten? What about dairy, which I haven't tolerated for several years? Egg bothers me at times, but soy doesn't. Thanks in advance for any enlightenment you all can provide me!

dgshelton · Post by **dgshelton** » Thu Jun 30, 2011 6:25 pm

Pat - Tex is the expert on this stuff, but with 2 genes for gluten intolerance and that low of a number, I would bet that you are IGA deficient. Tex can explain this much better than I can.

Hugs,

sarkin · Post by **sarkin** » Thu Jun 30, 2011 7:26 pm

Denise,

I had the same notion about the possibility of IgA deficiency.

Pat,

If you know you can't tolerate dairy, I'd absolutely continue to avoid it. If you're feeling better without gluten, my guess is you'd react, perhaps more strongly, if you let it creep back in (that's how I got here - I went GF on a hunch, and then thought maybe I was being silly, and ate a flour tortilla... turns out I was right all along, and it was drastically worse than the nagging symptoms that made me suspect I should give GF a try).

I bet your instincts about eggs are good, but maybe you could try them again after some time of recovery. I'm thinking I might have a date with a taste of egg in about a year - maybe we can make a date for a tiny omelette

How are you feeling - both physically, and in puzzling out your results? Denise and I both had spectacularly decisive results (and others, too) - but you are not the only one to experience "OK" results for a food you know you can't tolerate. In this topic http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089 are many folks' results; if you look for Marliss, you'll see she had an even lower result than you did for gluten, and she is very strongly intolerant. (Marliss, if you're listening - was it you who felt ill after an affectionate kiss from a cake-eating beloved husband???)

I agree with Denise - Tex can give some more helpful context about the possibility that your IgA is "underpowered" - it is incredible how much individual variance there is in symptoms, genetics, test results, etc., and how complex the whole process is... and also how much we all have in common.

Hope you're feeling strong and well,

Sara

Reneeknits · Post by **Reneeknits** » Thu Jun 30, 2011 7:59 pm

Pat,

Thank you for posting your results. I'm new here and will be having the testing done myself, just need to save a bit first, so I'm anxious to fully understand more about the testing, results, etc.

I hope that you will find a diet that brings you success!

Thanks again for sharing your results!

Renee

dgshelton · Post by **dgshelton** » Thu Jun 30, 2011 8:24 pm

Sara - How was the trip to France? I hope you took lots of pictures to share! I'm anxiously awaiting to hear all about it.

By the way, wasn't it you who posted about the So Delicous coconut ice-cream? I found some the other day and just had a big bowl with fresh blueberries. It was So....well, Delicous!

I'm glad you're back.

Hugs,

Post by **tex** » Thu Jun 30, 2011 10:02 pm

Hi Pat,

Hmmmmm - interesting results. Of course, theoretically, not everyone with MC, has food intolerances, but something is causing your MC symptoms, and there are basically only two options - a medication, or one or more food sensitivities. I believe that if I were in your shoes, I would either ask my GP to test for selective IgA deficiency, or I would continue to avoid those foods, until I attained remission, and then I would experiment with them, (one at a time), to see if any of them caused symptoms.

Otherwise, if you simply assume that the test results are correct, and you continue to eat those foods, if you happen to be IgA deficient, then you might never be able to reach remission. Somewhere around 1 in 500 people have selective IgA deficiency, depending on which research you go by - I've seem some reports of as low as 1 in 300, to as high as 1 in 600. Regardless of which figure is accurate, selective IgA deficiency is definitely not a rare event.

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

Thanks,
Tex

patc73 · Post by **patc73** » Fri Jul 01, 2011 6:15 am

Tex, of course you can add my results to the database. If I am IgA deficient, that would explain my exaggerated sensitivity to dairy, as well as gluten. Since I definitely feel better since going GF, and my bloating is almost gone (I no longer feel like I'm several months pregnant!

), and my skin rash is gone too, I'm sticking with the GF/DF diet. With two copies of the gluten-sensitivity gene, it makes total sense to continue being GF. I may try soy and a little egg again, though. (One thing at a time!) Leave it to me to be one out of 500...when it comes to weird medical conditions, my family and I seem to have them disproportionately!

sarkin · Post by **sarkin** » Fri Jul 01, 2011 8:47 am

Denise - thanks for the shout-out (and Pat, thanks for letting me sidetrack for a moment here).

Paris was great - I am writing up some notes to post, but they're a little all over the place, and I think my bounce-back from the jetlag is slower (whether that's MC, middle age, or something else, who knows?). It was easier to travel than I thought, and feeling good was so important to me that I didn't feel at all tempted. I've eaten a lot of beautiful cheese in my earlier life - I can move on now

It's a great walking city, and we had lovely weather - just getting hot the last day or so. And the time with family was wonderful, hard as it can be to settle into a restaurant with 13 people (from 5yo to 76 - don't tell my FIL I told his real age!), we never had trouble.

More on all this on the weekend, promise! My husband took some pictures, and so did my brother - I'll see if I can get my hands on a few. I came home determined to spend the rest of the summer enjoying NYC the way we enjoyed Paris - and since New Yorkers often flee the city for long holiday weekends, I picked a great time to begin.

So glad you liked the So Delicious! I think I'm about to start making my own coconut milk - we are going through it in huge quantities. And I'm going to make my own banana-coconut ice cream over this weekend... I'll let you know how it goes. I got my husband a So Delicious yogurt yesterday and he looooved it. I had a taste - it was the raspberry flavor, and it was really good. I like things plainer and less sweet, so I might mix it with their plain version. (You know I want to make my own, but convenience foods are really convenient!).

Pat, your approach to your results seems good. I also lost a huge amount of bloat when I went GF/DF - at first I thought it was all weight loss, because I was sick enough to be dropping pounds pretty fast in the beginning. But then I tried a little rice, and immediately swelled up. My clothes fit totally differently now, but I'm waiting to shop till I know I'm not still changing dimensions. (BTW I now tolerate rice - but stick to only occasional small amounts.)

I just saw an article today that celiac patients are at greater risk for cataracts, which both my mother and grandmother had. I'm beginning to think that even some of the relatively common health glitches out there may be connected to gluten sensitivity, or made worse by gluten intake for folks like us. So maybe some of your other medical 'quirks' will be alleviated now that you've seized control of your diet, as confusing as that process may be.

(Tex, I'll find that link, if you haven't already seen it - heading out just now.)

--Sara

dgshelton · Post by **dgshelton** » Fri Jul 01, 2011 9:46 am

Sara - Did you see Joan's post about the gluten free scavenger hunt in NYC? It looks like it will be lots of fun. I wish I lived closer. We have no gluten free restaurants within 100 miles of where I live. We don't even have a Whole Foods or Trader Joes within 100 miles. It would be so nice to have either of those!

Sorry, Pat, I didn't mean to commandeer your post. It seems a lot of us have experienced falling into the "not normal" category when it comes to our health. I know it's happened to me and also to my mother too many times to count. It's not very reassuring when your doctor comes in scratching his head while saying this is very unusual. I have always said my mom passed her "faulty" gene to me. It seems I was correct since I'm pretty sure the celiac gene came from her. She passed away before I had the test done, so she never knew.
Her doctors, like most of them out there, had no idea that gluten could be the cause of all her "weird" symptoms. I'm so glad that you are starting to feel better!

Hugs,

patc73 · Post by **patc73** » Sat Jul 02, 2011 10:15 am

Sara, welcome home! I might just take you up on the date to try an omelette!

And I don't mind my post being "commandeered"...I love travel stories! And, Denise, I've lived on So Delicious soy ice cream sandwiches for years...my husband has his bowl of Breyer's Lactose Free Vanilla ice cream, which I can't handle, so I have my soy ice cream. Yum!
I have a question about Udi's frozen bread, which I've tried and love but I have to go 40 miles to buy. Does anyone buy it online and have it shipped? How do they keep it cold? Is shipping expensive?
Thanks again everybody! I'm learning to live GF/DF and finding more foods everyday that I can have. My sister bought me GF cupcakes that taste like Hostess Ding Dongs!

I saved one for tonight, while my family has apple pie and cupcakes watching the fireworks over Lake Columbia.

sarkin · Post by **sarkin** » Sat Jul 02, 2011 10:18 am

Denise,

I did see that - I think it's a great idea, and I love the publicity it gives to the 'scavenger hunt' it can be to find a safe meal. I am ambivalent about a lot of gluten-free foods, especially those that mimic/emulate regular baked goods, because they have so many ingredients to make non-gluten flours behave like wheat, and I'm not sure whether I tolerate all those well. And, luckily for me, I kind of don't like baked goods, probably from having a nagging feeling they didn't agree with me for years. However, I did mean to check in on that event and talk it up... so thanks for the reminder! I'm going to invite a friend.

I seem to do best being on some variant of the Paleo diet - with no grains or very few. I don't know whether that will change as I heal, or it's just what suits me best. Now that the frenzy of pre-trip planning and travel are done, I'm going to settle in this summer with my food and symptoms diary and really get my detective skills honed.

Love,
Sara