Enterolab results-finally

irisheyes13 · Post by **irisheyes13** » Tue Mar 01, 2011 11:41 am

It is 3 weeks to the day and I finally received my Enterolab results. I guess I'm not surprised but am really bummed about the egg and yeast results. I'm still taking all this in so for now I guess I don't have anything more to say. Tex, feel free to add these to your accumulated data of others on the board.

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 58 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 31 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 21 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0603

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

C) Egg, Yeast, and Soy Food Sensitivity Stool Panel
Fecal Anti-ovalbumin (chicken egg) IgA 20 Units (Normal Range is less than 10 Units)

Fecal Anti-saccharomyces cerevisiae (dietary yeast) IgA 15 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 25 Units (Normal Range is less than 10 Units)

Celie · Post by **Celie** » Tue Mar 01, 2011 1:05 pm

Hi Kelly,
Welcome to the multiple sensitivities club! I, too, was surprised when I was sensitive to everything. It take adjustment and I am still in the process. But here is a yummy cookie recipe to start you off....

http://www.elanaspantry.com/dairy-free- ... p-cookies/

Celie

irisheyes13 · Post by **irisheyes13** » Tue Mar 01, 2011 1:38 pm

Celie,

Thanks, I needed to hear that right about now! It's so funny because I was on Elena's Pantry when your email notification popped up lol. She has what looks like tons of great recipes but I haven't tried any yet. I have bookmarked several over the last few weeks but haven't seen her chocolate chip recipe. Thanks for the tip... it sounds like the perfect comfort food to make me not feel so bad about the results today. I just posted a question regarding blanched almond flour on another thread. Have you tried it yet? I was considering ordering it due to the low glycemic index and nutritional value.

I'll keep you in mind if I try a recipe as well since it looks like we have the same intolerances!

Polly · Post by **Polly** » Tue Mar 01, 2011 2:17 pm

Aw RATZ, Kelly!

Welcome to the double DQ1 club. Most of us are posting regularly in the MRT forum just now. (I saw your post there and will catch up with you there a little later). This gene pattern is found in those of us with the MOST sensitivities. Bummer, huh? But I am here as living proof that a double DQ1 can go into longterm remission.

Have you done any reading on the paleo diet? (The best book is Cordain's "The Paleo Diet"). With multiple sensitivities, it is often the best way to go, as it eliminates all grains, dairy, soy, etc. right off the bat. The MRT is very helpful for double DQ1s because we often have additional sensitivities to some veggies, fruits, nuts, etc. that are allowable on the paleo diet.

Please cheer up - it IS doable!!! And you won't believe how much better you will be feeling one of these days.

Love and :bigbighug:

Polly

Celie · Post by **Celie** » Tue Mar 01, 2011 2:21 pm

I have used several of Elena"s pantry recipes. Some are too hard for me, (I am not much of a cook), but this one is not. I have been using the Honeyville almond flour. I get it on amazon. The bob's mill almond flour is not as good and it is the only brand available where I live. I hear that Trader Joes has a good almond flour that is less expensive. But we don't have one around her for me to find out.

I also like the coconut flour. It is much lighter. I have used it in some other recipes.

Good luck on your journey!

Celie

Gloria · Post by **Gloria** » Tue Mar 01, 2011 2:46 pm

Celie,
I bookmarked Elena's Chocolate Chip cookies for the time when I can eat chocolate again.

Kelly,
Welcome to the double DQ1 club! It's a dubious honor. You share the identical genes that Polly and I have. I remember when Polly excitedly wrote that we shared the same genes. My heart sank as I read all of her intolerances under her avitar, especially chocolate.

I was in shock after I received my results, which were the same as yours. I am still not able to eat eggs, but I do eat yeast bread about once a week. I abstained from eating it for a couple of months at first. I believe Polly still doesn't eat it. JoAnn also tested positive for yeast, and I'm pretty sure she eats yeast breads now and then, too. She is in remission after going off Entocort several months ago. JoAnn is also able to use eggs in her baking. Look in Dee's Kitchen for egg-free recipes.

I agree with Polly, you will get better, but it might take a little more effort to get there. You can draw upon the experiences of your fellow double DQ1s on the board. We will help you as much as possible.

Gloria

Post by **tex** » Tue Mar 01, 2011 8:16 pm

Hi Kelly,

Polly has already broken the bad news to you, (about double DQ issues), so here is some good news: we have found that virtually everyone who tests positive to yeast, seems to be able to safely eat yeast, after they get their MC symptoms under control, (IOW, after they are in remission). Apparently a positive result on Enterolab's yeast test is an indication of a yeast overgrowth, and once the symptoms are brought under control, the yeast sensitivity disappears. Unfortunately, yeast is the only item for which an Enterolab test is available, that does not result in a lifelong sensitivity - a positive result on any other test seems to be a permanent condition.

Thanks, I'll add your results to the database.

Tex

MaggieRedwings · Post by **MaggieRedwings** » Wed Mar 02, 2011 5:56 am

HI Kelly,

I too want to welcome you to the club. It seems it is ever growing but with persistence and good journaling - it seemed key for me - you will get there.

Love, Maggie

irisheyes13 · Post by **irisheyes13** » Wed Mar 02, 2011 11:01 am

Not sure where to begin in thanking everyone for the education, tips and condolences

I have to admit I am not handling this news as well as I expected. I was fully anticipating gluten, casein and soy intolerances but was completely surprised by egg and yeast not to mention the double DQ1 whammy. I've spent lots of time reading so many threads and have read lots of Gloria and Polly's struggles so at least I know what I may be up against.

Polly- I have been a lurker in the MRT section as well as your cave dweller area. I know a bit about the Paleo diet but will need to get a bit more knowledgeable now. As far as the MRT testing, it is something I am definitely interested in because it sounds like there may be quite a bit more landmines that I am facing and I don't want to delay my healing any longer. Unfortunately finances are going to delay me for a bit. With just having the Enterolab testing expenses and 3 of our 4 kids in college right now, I'm going to hold off but maybe I'll reach out to Mary Beth to learn about the process and how to proceed so that I know what to do when I'm ready. The LEAP diet and results from the testing seem so valuable to everyone.

Gloria- Thanks for "allowing" me into the DQ1 club

I'm honored to be surrounded by such warm, intelligent, helpful friends. You all have paved the way so that hopefully I will learn from your experiences and will find remission sooner rather than later. I plan to avoid all yeast and eggs (along with gluten, casein and soy) as best as I am able until I am feeling much better. It's good to know that I may be able to have small amounts of yeast or possibly egg (as an ingredient) in the future but won't think about that now.

Tex- When I spoke with Enterolabs, I specifically asked if there is a possibility of systemic candida in the gut would the test results for yeast be altered or affected by it and her answer was NO, it would not... I like your answer better but only time will tell. I'm still suspicious of having a yeast overgrowth so I also plan on keeping my sugar intake very low.

Maggie- thanks for the reminder about a food journal. I must admit I haven't been very good about that but it seems imperative now. My official winning the pooh journal has started today.

I think my biggest struggle isn't how I'm affected by this but the impact it has on my family. The guilt is overwhelming because as everyone here knows, it isn't limited to us but our loved ones feel the effects as well on a certain level. I've always been a "foodie" and love to cook and bake. It is something my husband and I both enjoy and we spend our weekends together in the kitchen coming up with some creative and fun dishes and have a blast doing it while watching a movie or listening to some good music. So much so that we did a complete kitchen remodel 6 months ago. Obviously this news puts a damper on things but we had a long talk last night and we aren't letting this get us down. I will get creative and see if I can come up with some recipes which will work for the family along with my safe (and somewhat boring) food. He will take over on the "fun" stuff that I can't have for the rest of them and we will still spend quality time together in the kitchen.

I'm also very worried about the kids because if I understand how the genetics testing goes, since I have double DQ1 genes, my children all have at least one gluten sensitive gene. Please set me straight if this isn't the case. None are showing any symptoms yet but I'm so worried about them. They are at an age where I can't really control their diets because they eat away from home more than they eat with us and it's your typical teenage food.

Thanks, once again, for all the support and help. I'm sure I will be full of questions soon.

Zizzle · Post by **Zizzle** » Wed Mar 02, 2011 12:23 pm

Kelly,
The good news is your DQ1 genes are not the official celiac genes (DQ2 & 8), so hopefully your kids won't run the risk of developing celiac disease. But who knows what Dad gave them. I tested positive for everything but eggs, and I do eat Udi's bread several times a week now with to reaction from the yeast. Hard cider and wine are another story, but I have them on occasion too. Yeast is also everpresent on the skin of many fruits, especially grapes, so peel, peel, peel. But there is no way to avoid yeast 100%. It's simply everywhere.

Your food relationship with your husband sounds similar to mine. We've done OK altering our recipes for the family and making me rice pasta when he's making regular pasta. Most of our meals are now a tasty meat/chicken/fish and steamed vegetables, sometimes potatoes or rice, sometimes pasta. He's even good about using "my butter" (Earth's Best soy-free) or oilve oil on communal foods. However, I think my failing to buy lots of gluten-containing foods when I shop is beginning to take it's toll. He recently said he suspected gluten was not my problem, since I'm not 100% better on the diet. He fails to remember how I lived on the toilet, and how pregnant I looked from the massive bloating before the diet. Eating out is also becoming contentious, because I either pick where we go, or I barely eat, and that's no fun for anyone. But he does try to find restaurants with GF options.

I hope to someday win him over to my way of eating, but until then, I endure a bit of anti-GF/DF backlash. Hopefully you'll be able to avoid that.

Gloria · Post by **Gloria** » Wed Mar 02, 2011 1:30 pm

Zizzle wrote:He recently said he suspected gluten was not my problem, since I'm not 100% better on the diet.

I've heard similar conclusions from DH also. I can see where they would think that because they're not dealing with the day to day symptoms. They don't see the improvements; they just see that we are depriving ourselves and wonder why.

My husband recently has changed his diet because the doctor warned him that he will have to go on insulin if things don't improve. It's been interesting to see him counting calories and carbs and having to watch what he eats. I've been helping him through the mechanics of it. It's a completely new experience for him. He won't say it, but I think he's getting a small glimpse of what I've been going through.

Gloria

Deb · Post by **Deb** » Wed Mar 02, 2011 3:19 pm

Hi Kelly,
I sure understand and sympathize with you too. I'm another double DQ1 and worry about my kids and
already have seen some potential symptoms with my daughter. She does, kind of, listen though. A main passion
for me has been cooking and big family dinners and I posted on here about the grieving process I was going through when I was first diagnosed. Though so far I've just eliminated gluten (since October), I tested reactive to casein but can still tolerate it. I haven't had the rest of the tests but will if necessary. I am trying to take a new, creative outlook with cooking and experimenting with a lot of ingredients I've never used before. Some is working, some is not. DH is being pretty supportive but loves dessert. I recently made an angel food cake with sweet rice flour that wasn't too bad! Good luck. The shock will wear off and it will feel good to feel good again.

Kari · Post by **Kari** » Wed Mar 02, 2011 3:21 pm

Hi Kelly - here is a hug for you, as I think you can use one :bigbighug:

. So sorry you had to find out this news, but as others have said - there is hope of getting your life back!!! You are the newest member of the double DQ1 club, so welcome - for whatever it's worth, you will feel lots of warm, loving and understanding vibes from us.

If you're diligent about eliminating the 5 items from your Enterolab test, you will definitely feel better quickly. However, as others of us have found out, that MAY not be the end of it. With your "winning the poo diary" that you've already started, you will hopefully be able to ferret out any other intolerances without needing the MRT test. The test will always be there as a "last resort" should you ever feel a need for it.

After I took the Enterolab test and found out about my double genes, I immediately started worrying about my son (he is 39) and 3 grandchildren. Well, they have since been tested, and unfortunately they are all positive, and have now gone gluten free. It was not a hard transition for the kids, because they are so close to their dad and me, and actually think it's kind of "cool" to be "gluten intolerant" like us :). However, it's a whole other story for teenagers and college kids, so if your kids are feeling OK, you may not want to have them tested at this point in time. I just read Zizzle's post about your genes, so perhaps your kids do not have the sensitivity.

The other thing I'd like to add is that it does get much easier as time goes by. I'm actually starting to think that eating such a healthy diet now (almost exclusively unprocessed foods), will benefit me greatly in the long run. It's already starting to make a difference to me, as I seem to require less sleep, and am starting to feel a bit more energetic. We are so much more adaptable than we think, and although this is quite a life change, it does not take that long to adapt. Feeling well is an ENORMOUS reward!!! Well, at least that's how I feel.

Lots of luck to you with this transition - I look forward to follow your progress as time goes by. From what I've learned about you through your posts here, you have what it takes to make yours a success story!!!

Love,
Kari

irisheyes13 · Post by **irisheyes13** » Wed Mar 02, 2011 5:10 pm

Well I sit here with tears streaming down my face as I type this. They are bittersweet tears because I'm still reeling from the dose of reality I have been given but more so, how you all take time out of your busy lives to help me see the positive aspects of our limitations, to help guide me through the maze of intolerances and give a hug when it is very much needed. Kari, I am feeling those wonderful vibes and thank you for your kind and wise words.

I hesitate to say this for fear of jinxing myself but I have gone 24 hours without a single episode of D-and THAT hasn't happened in years. What's funny is that I didn't even realize it until about an hour ago. I have been so sidelined with thoughts of what to eat and trying to wrap my brain around it all that it hadn't even occurred to me. Maybe, just maybe the healing has begun after a month of gf, cf & sf eating. I'm not getting my hopes up yet and I'm fully prepared for other intolerances to show up down the road based on the history of double DQ1'ers.

My husband has brought up how difficult it will be to dine out and I think he is bothered by it but he tried not to let it show. I hope that it doesn't cause tension between us or the kids. He already sees the improvement in the diffuse pain I have been in. It's hard to be so close to a MC sufferer and be understanding day in and day out because it's difficult to know how truly horrible it is unless you have it personally and I wouldn't wish this on anyone...well maybe my gastroenterologist who told me I didn't need to eat gluten free 7 years ago.

Zizzle, I feel I will be in a similar situation as you with regard to dining out and a non-gluten free home.

It's not a death sentence and I will feel better in time and actually I already feel much better thanks to all of you.