Sara's Enterolab results

sarkin · Post by **sarkin** » Thu May 19, 2011 12:37 pm

A friend of mine asked when I went GF, "are you sure?" Yes, I'm sure:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 103 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 16 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score Less than 300 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow’s milk) IgA 15 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0202

Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)

C) Egg, Yeast, and Soy Food Sensitivity Stool Panel
Fecal Anti-ovalbumin (chicken egg) IgA 13 Units (Normal Range is less than 10 Units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 9 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 8 Units (Normal Range is less than 10 Units)

C) Antigenic Food Sensitivity Stool Panel
Mean Value 11 Antigenic Foods 8 Units (Normal Range is less than 10 Units)

I am not certain this means I'm in the clear for soy, because I haven't been eating it (or any other legumes) for some time, so the antibodies may be lower than they would be if it were still in my diet.

I believe the 'Antigenic Foods' panel would look different if I had reacted to some, but not all of the foods, and in that case would have shown the relative reactivity? I kind of wish I had learned more from that test, but more than that, am relieved that there's no obvious red-flag food on that list of 11 (oats, corn, rice; beef, pork, chicken, tuna; walnuts, almonds, cashews; potatoes).

Post by **tex** » Thu May 19, 2011 12:50 pm

Sara,

Interesting - you're a member of the Double DQ Club.

Is it OK if I add these results to our database?

Tex

sarkin · Post by **sarkin** » Thu May 19, 2011 1:06 pm

Tex,

Yes, absolutely - I meant to indicate that in my original message.

Thanks for the welcome to the club! That surprised me. I had it in my head that I'd have GS genetics but maybe not both alleles, and probably not a celiac variety. (WHY I made that up, I have no idea - good thing I placed no bets.)

I was also surprised that the anti-gliadin number was so high, after 3 months GF (except when I got glutened). That confirms, in my mind, that Dr. Fine is right about how persistent those antibodies are. That casein number is also high, after 3 months dairy free - so I'd guess dairy will never be safe for me (er, perhaps I mean, it never was!).

I forwarded the genetic part of the results to my brother - he's fit as a fiddle, and *might* not be a walking time bomb. Then again, he might.

I think this means I should see improvement by eliminating eggs. (That sounds calmer than it feels, and some corner in my mind is already bargaining for duck eggs - some distant day.)

L,
S

irisheyes13 · Post by **irisheyes13** » Thu May 19, 2011 1:46 pm

Wow Sara, I'm sure you're still taking all of this in... I remember the feeling well. So relieved to final know but shocked regardless of how much you felt like you prepared for it.

Yes, you get the dubious honor of joining us in the double DQ club... you have some stellar company however;) I believe you and Kari share the same genetics.

You have done such a great job analyzing and tweaking your diet already that hopefully by eliminating eggs, you'll be even better. (Although I'm sorry to see that you need to).

I'm curious about the list of 11 other foods- did they break each one down individually or is the Antigenic Food Sensitivity Stool Panel results the only details you receive? Good news that nothing jumped out on any of these foods.

:bigbighug:

Kelly

Zizzle · Post by **Zizzle** » Thu May 19, 2011 2:23 pm

Damn girl! Double DQ2s?!? Well, join the DQ2 club and all the excitement that has to offer. I often wonder why my extended family is so healthy (except for my sister who has IBS and granuloma annulare), when they all have either a DQ2 or DQ3 (also gluten sensitive). How is it that none of my grandparents, aunts or uncles had/have celiac disease or other related diseases? Why only me??? Maybe it was one vaccine or GI bug too many...or having mono (Epstein Barr) as a teen. Maybe your brother will be lucky. Or maybe he's not willing to share his toilet troubles? :cool:

Bummer about the eggs. As for soy, I suppose you can eliminate what you know, then add soy back in and see how you feel. I scored 11 for soy and I still eat GF soy sauce (the protein is hydrolyzed and fermented) and chocolate and other snacks with soy lecithin. Maybe moderation is the key?

MBombardier · Post by **MBombardier** » Thu May 19, 2011 3:36 pm

Zizzle, I may be able to give a little insight on that. I was slightly concerned about an on-going diarrhea problem, but not too, since constipation had been a constant companion since I was little. I had a colonoscopy after my gyn strong-armed me two days after a dear friend died of colon cancer six weeks after diagnosis. As far as I was concerned, I had no adverse reactions to food whatsoever except that tomatoes gave me a slight rash on my lips and my hand and made my knees sore for a couple of days. Oh, and drinking soy milk made my lips itch.

I was surprised that the GI biopsied my colon, and was blind-sided by his diagnosis of collagenous colitis. Through researching what this strange diagnosis meant, I came across Dr. Fine's site and went GF the end of September, and found this site shortly thereafter. Four months after removing gluten, an intense flare showed me that I was intolerant to soy. And the beat goes on...

You may recall that my Enterolab results showed a fecal fat level of 1444, indicating severe damage. I suspect this means that if I had allowed the GI to do an endoscopy, it would have indicated celiac disease. I was 53, and as I said, never had had more than a slight reaction to any food I had ever eaten. So I would say that it is likely that your relatives have things going on inside that they have no idea of. I certainly did.

Kari · Post by **Kari** » Thu May 19, 2011 4:31 pm

Sara,

So sorry to have to welcome you into the DQ2 club, but there it is. Bummer about the eggs. As you may already know, I tested negative for eggs, which I was very happy about, but I strongly suspected them anyway, and eliminated them even before I got my "positive" MRT verdict. The good thing is that you did not test positive for yeast - I'm not sure how you feel about bread products, so that may or may not excite you. For me, it was a big let down to no longer be able to have Udi's products.

After seeing your results, and finding out that you have double gluten sensitivity genes, I suspect that you'll want to do MRT testing. It was an enormous help for me, as it aided in narrowing down my food choices. Knowledge is power, and what could be more important than managing our health.

Again, I'm sorry your results were discouraging, but at least now a lot of the guesswork is behind you and you can focus on moving forward with your diet management program.

I have 5 older sisters who all live in Norway, and they have always had the problem with stomach bloating (as did my mom) - we've always joked around about how our genes have dealt us 'big stomachs'. I've explained to them about our shared genes and gluten, but it pretty much fell on deaf ears. They will all be shocked to see my 'flat belly' when I visit next month :).

I agree with Marliss that the fact that your brother does not seem to have any signs of issues does not exempt him from having them down the road. He certainly could forestall them by having himself tested, but I know how hard it is to convince a perfectly healthy person to worry about potential future health issues. My sisters are not healthy, and I still could not convince them.

Lots of luck to you on your continuing MC journey. I'm so glad you've been proactive and therefore have a lot of the tough initial work behind you.

Love and hugs,
Kari

Post by **tex** » Thu May 19, 2011 5:47 pm

Sarah,

If you were casein-free for 3 months prior to your Enterolab test, I'm very surprised that your casein result was so high. Your antibody level must have been way up there, at one time.

Love,
Tex

sarkin · Post by **sarkin** » Thu May 19, 2011 7:24 pm

Tex - I had the same thought.

I could have been 'dairied' when I got glutened, but... I have been "off dairy" in general, and not only since my "GF-vegan" experiment started February 1; I have been a minimal-dairy consumer for some time, suspecting it wasn't my best friend. In fact, my late mother was worried about lactose intolerance (how I wish I'd understood more about this for her sake - how I hope I understand enough now).

I do realize that 'very little' is a long way from 'none.' So there would be a little parmesan, or butter, or funky cheese, within my black-coffee lifestyle. In my dim awareness, I was more focused on lactose than casein.

But no matter what - that's a decisively high number. I am interpreting this result as "never again" for dairy of all kinds. Maybe that's the double-DQ2 legacy?

Thanks for your thinking here... always appreciated.

Love,
S

Gloria · Post by **Gloria** » Thu May 19, 2011 8:48 pm

Hi Sara,

I'm pretty surprised that you're a double DQ2. I may have been misinterpreting your symptoms, but I've thought that you've had a pretty good handle on things. It sounds like you have eliminated the major problems, but need to tweak a few more. I was pretty impressed with the list of foods that you are currently eating.

Egg intolerance is certainly a bummer. When I found I had the intolerance, there weren't that many of us here who shared it. It seems that more often than not, people are testing postive to eggs lately. I have a feeling that you will be sharing recipes with us that work without eggs.

I am pretty puzzled by the report on the extra 11 foods: oats, corn, rice; beef, pork, chicken, tuna; walnuts, almonds, cashews; potatoes. I can't believe the test results are given as an average of the individual scores. That's pretty useless. You could have tested 3 on five foods and 12 on the other six, and get an average of 8. I hope another report is forthcoming giving an individual report on each food. If not, then I would recommend the MRT test over this new one.

Gloria

ant · Post by **ant** » Fri May 20, 2011 12:15 am

Dear Sara

Your results, including on your genes. Makes me wonder why Dr Fines and his fine PHDs do not do a simple statistical study.......

Take a sample of say, 300, from the general population (or, if they wanted to get more granular, 100 each from different age, sex and ethnic backgrounds) and compare the IgA scores and gene types with a sample of say 300 people known to have been Dx MC. I am certain this will statistically prove the relationship between food intolerance and MC ...... and also "prove" Dr. Fines research.

Best, ant

Post by **tex** » Fri May 20, 2011 8:07 am

Ant,

He's already done that - years ago

http://www.enterolab.com/Lecture/Lecturenew/frame.htm

Click on slide number 29, to see some interesting statistics about gluten sensitivity, for example.

Tex

sarkin · Post by **sarkin** » Fri May 20, 2011 8:55 am

Gloria,

I'm pretty surprised, too. And lucky. Although the anti-tissue transglutaminase antibodies were elevated, meaning autoimmune issues, I didn't have a high fecal fat score, which (as Marliss points out) seems to mean that I may not have severe damage. I don't know why that might be the case.

I am going to call for an explanation of the results of the 11 additional foods. I never intended it to be instead of MRT, but was hoping that if I need to avoid particular proteins I'd get a heads up before the new MRT is available. And I may not need to do MRT, because I seem to be doing pretty well. We shall see.

Ant, I was pondering all our results and thinking of tinkering with a spreadsheet. Tex, thanks for reposting Dr. Fine's presentation... I'll share that with my brother, I think ;)

Love,
Sara

ant · Post by **ant** » Fri May 20, 2011 8:58 am

Dear Tex

Cricky! I had never seen that before....... Celiac: 100%....... next up MC: 69%.....normal volunteers: 29%..... cannot get more conclusive then that!!!!!!! (and 29% for "normal" is a high figure too.....)

What on earth is the ACADEMIC COMMUNITY (seekers of the "truth".....apparently NOT) doing ignoring these numbers? IMHO academics who sit in their sponsored chairs should hang their dunce-capped heads in shame (or perhaps infamy).

And, WHY are official Government website still urging people with MC and "IBS" to eat plenty a varied diet (including gluten) in the face of these facts? I think I know the answer: intellectual laziness....or worse..... corruption.

And, where on earth is Oprah and Michelle O when we really need them to make waves and help us all turn to REALLY healthy eating habits and reduce health-care costs?

Maybe we need to throw sacks of wheat into the Boston Harbor to protest against today's equivalent of a monopolistic East India Company.

END OF RANT.

best ANT (Not so "softly catchee" today)

Zizzle · Post by **Zizzle** » Fri May 20, 2011 9:53 am

Ant,
I agree. Unfortunately, it's government's job to encourage people to eat the foods they can afford, and the foods which are grown in large quantities around the world. Otherwise there would not be enough food to feed the world's population. Imagine if the majority of Americans had to stop eating gluten and dairy?? What if Michelle Obama told welfare mothers only to feed their children organically raised produce, meat and dairy?? Grains are cheap and easy to produce, process, store and sell compared to fresh fruits and vegetables and meat. It sucks, but it's the world we live in.

Being able to treat our MC with diet is a luxury, since the foods we must eat cost more and are often harder to find.