Really disappointing Enterolab results. Need support. :(

Lucy_B · Post by **Lucy_B** » Sat Oct 24, 2015 10:36 pm

Well, folks, the news is not good. My Enterolab results are as follows:

Comprehensive Gluten/Antigenic Food Sensitivity Stool Panel

Fecal Anti-gliadin IgA 310 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 47 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 44 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 48 Units (Normal Range is less than 10 Units)

Mean Value 11 Antigenic Foods 49 Units (Normal Range is less than 10 Units)

There were no foods with zero or minimal (+1) immunological activity.

Foods with moderate activity (+2) are:

Corn
Rice
Pork
Chicken
Beef
Cashew
Walnut
White potato

High activity (+3):

Oat
Tuna
Almond

Grains:
Grain toward which you displayed the most immunologic reactivity: Oat
Grain toward which you displayed intermediate immunologic reactivity: Corn
Grain toward which you displayed the least immunologic reactivity: Rice

Meats:
Meat toward which you displayed the most immunologic reactivity: Tuna
Meat toward which you were next most immunologically reactive: Pork
Meat toward which you displayed intermediate immunologic reactivity: Chicken
Meat toward which you displayed the least immunologic reactivity: Beef

Nuts:
Nut toward which you displayed the most immunologic reactivity: Almond
Nut toward which you displayed intermediate immunologic reactivity: Cashew
Nut toward which you displayed the least immunologic reactivity: Walnut

Nightshades:
You displayed immunologic reactivity to white potato, the member of the nightshade family usually consumed most often and in greatest quantities. While this does not necessarily mean you would react to all other nightshade foods (tomatoes, peppers, eggplant), it is possible. In the realm of elimination diets for immunologic disorders, nightshades are usually eliminated as the entire food class (i.e., all four previously mentioned foods in this class). This is especially important to the clinical setting of arthritis.

So....yeah. It's a bummer. Having looked at others' results, I didn't think my antibody levels would be quite so high. It's pretty depressing. :'( BUT, at least now I have a sense of how to move forward. I'm just feeling incredibly overwhelmed at the prospect of cutting out so many foods, particularly because I'm already underweight.

Lots of questions, where to begin. First, can someone explain how the "+1, +2, +3" scores work? For example, am I potentially as sensitive to the +2/+3 foods as I am to, say, soy (which had a score of "48 units")? I'm assuming so.

Also, is it possible to reduce sensitivity to ALL foods by eliminating the primary offenders? For instance, since gluten appears to be my #1 trigger, could I potentially reduce antibody production to other foods by completely eliminating that one? My goal at this point is to cut out gluten, dairy, soy, eggs, oat, tuna, almonds, and white potatoes (have been 100% off gluten for awhile). Do you guys think I definitely need to get rid of all legumes and nightshades, as well? I seriously feel like I'm about to cry, lol. I can't figure out where this is coming from. I'm 34 years old and autoimmune illnesses do not run in my family (well, except for my maternal grandfather who had diabetes and arthritis). I've led a very healthy lifestyle for the past decade, including avoidance of gluten, dairy, corn, and white sugar most days of the week. I just feel really sad and confused about how this happened, and why. But I'll stop wallowing now. :) I'm curious as to whether inflammation begets sensitivities or vice versa (chicken or egg thing)....are we overly sensitive to foods when we're inflamed/flaring, or are we inflamed because of the food sensitivities? I'm sure it's a bit of both and becomes a vicious cycle. Really wish I knew how to fix it without maintaining such an incredibly strict diet. I hardly have to time to cook as it is, and eating out/socializing with food is about to become impossible.

Gabes-Apg · Post by **Gabes-Apg** » Sat Oct 24, 2015 11:13 pm

Firstly. a hug as you deal with the shock and various emotions
:bigbighug:

re your questions....
as some have posted - once there is has been good healing then there has been the chance to have small amount of medium level type triggers..

Do you guys think I definitely need to get rid of all legumes and nightshades

With that really high score for soy I would say YES! I personally react worse to soy than gluten so have to avoid soy at all costs, including make up, moisterisers etc.

.

are we overly sensitive to foods when we're inflamed/flaring, or are we inflamed because of the food sensitivities?

yes it is a bit of a chicken and the egg, yes we are more sensitive to trigger foods when we are inflammed - so minimising inflammation is key to wellness.
there is the factor that ongoing inflammation can deplete key nutrients, and nutrient deficiencies/imbalances is what causes the upset in our bodies systems (methylation cycle, endocrine system, adrenals, nervous system etc etc) with the systems out of balance, the inflammation reaction is worse...

Really wish I knew how to fix it without maintaining such an incredibly strict diet. I hardly have to time to cook as it is, and eating out/socializing with food is about to become impossible.

Sadly - there are not many options....
my question to you is - how much do you want to be well? do you still want to have a baby (i note the miscarrage number in your post)
the symptoms you are having and the knowledge from these test results is valuable - your body is sending a strong message.
What many have learnt, ignore that message and things can and will get worse health wise...

Living with MC, and managing it to optimise wellness will take change, sacrifice, etc. you have to make time to cook safe meals.

So far as socialising and eating out, what many have found is if they follow the bland, low amount of ingredients eating plan so the body can heal a bit, then you can get your life back which includes socialising eating out. I wont lie, it wont be the same as life before MC.
The other aspect to all of this is the mental and emotional work of acceptance, acceptance of what is, being at peace with what is, MC is for life. The quality of that life, and your long term wellness is dependent on how you handle this.

we cant 'fix this' or 'eliminate it' we have to figure out the management plan to co-habitat with it and embrace it with love.

Lucy_B · Post by **Lucy_B** » Sun Oct 25, 2015 12:04 am

Thanks, Gabes! I needed that hug.

Yes, I'm sure I'll come to terms with this eventually. It just seems like everything I put in my mouth is causing problems, and that is a tough pill to swallow. I love food so much (and of course we need it to survive). But I'm preaching to the choir. :) I guess what really got me at first was just how insanely high my scores look compared to others that've been posted. It makes me wonder if I have some kind of systemic overabundance of IgA. Although, I've had my blood levels tested as part of the fertility process and they were normal. So odd. Speaking of fertility, after so many miscarriages, we've recently made plans to move forward with a surrogate (my amazing sister in law). But yes, I would still love, love, love to have a baby (and not spend thousands of dollars on IVF). Looks like food sensitivities could have been a major contributing factor in my losses, even though I was (mostly) avoiding what I thought were my triggers. I kind of want to kick myself right now. So many years of anguish.

Well...there's only one direction to go, and that's onward! Thanks, everyone. I really appreciate the support. It helps to know that you all get it. <3

Lucy_B · Post by **Lucy_B** » Sun Oct 25, 2015 12:14 am

P. S. Another thing I meant to mention is that I almost never eat tuna or oats (which were in the +3 category). So I was kind of surprised to see those on there. Is it common to have a high stool antibody count to foods that are very rarely consumed? Thx!

Deb · Post by **Deb** » Sun Oct 25, 2015 5:45 am

Lucy, my major four triggers were extremely high also. Anti-gliadin was over 500. Tex told me that was due to my reacting over a long period of time not that I was having worse reactions. The other panels were not available at that time so I'm not sure how I would have fared with those. The good news is I'm doing quite well now. Deb

Lucy_B · Post by **Lucy_B** » Sun Oct 25, 2015 9:46 am

Thanks, Deb! That's comforting to hear. :) Hopefully it's the same with me. Honestly, I have a feeling I've been reacting to ALL foods for quite some time and that any food tested would probably show some kind of response. So frustrating. There's no way I can eliminate them all, but I can at least work on the top four plus my biggest triggers from the other categories. How long did it take you to start feeling better after going on the diet? And were you very strict with it? I'm about to start LDN, as well. I hear that can help minimize food reactions, which would be a huge blessing. We shall see...

Post by **tex** » Sun Oct 25, 2015 10:08 am

Hi Lucy,

To address your question about the relationship between the individual tests and the test for the 11 other antigenic foods:

In general, the relative importance of the test results for the foods in the latter test depend on the overall score. A score of 49 is relatively high, so unfortunately those foods are more important in your case than they would be in most cases (because most scores are significantly lower). In this case they still will not be quite as significant as the individual test results, but they definitely cannot be ignored in your recovery program.

The bad news is that you will need to avoid all nuts, all grains, dairy products, and the most common meats (IOW, the most common modern foods). Basically, you will need to follow a restricted paleo diet. The good news is that it will be a very healthy diet, and there's a good chance that after a while, miscarriages will no longer be a problem.

Turkey, lamb, duck, goose, rabbit, pheasant, quail, venison, etc. will be your best options for protein sources.

Lucy wrote:Is it common to have a high stool antibody count to foods that are very rarely consumed?

No, that's not common, but it happens surprisingly often, so I'm guessing that means that in those cases the antibody production may be due to an innate immune system characteristic, rather than an adaptive immune system development.

Gabes wrote:I wont lie, it wont be the same as life before MC.

Gabes didn't finish that line of thought. No, it definitely will not be the same, but believe it or not, despite all the negative implications of such a restrictive diet, and all the changes that we have to make in our lifestyle, most of us eventually discover that we are at peace with our new lifestyle, and we appreciate life more than ever. It's almost like being born again, in a different body, with a different lifestyle. Maybe this is the ultimate form of rehab.

As an aside, I'm not surprised that I developed MC, because I had many of the signs of gluten sensitivity for all of my life, I was a perfectionist, I was usually carrying way too much stress, and the word "healthy" was never a consideration when choosing what I ate (way too much sugar). But I never cease to be surprised at how many people who live apparently healthy lifestyles, end up with MC, complete with about a zillion food sensitivities. Is it fate? Or are we missing something?

Tex

louis · Post by **louis** » Sun Oct 25, 2015 11:14 am

I had very similair results as you had. The good news is, it really gets better if you restrict your diet to lamb and some vegetables only, although its very boring in my eyes. I also eat some fruit, but ive heard not everybody can tolerate it. But basicly, lamb, vegetables and fruit are the only things i can eat, but with them im almost a totally healthy person.

But on the other side, there are some things that worry me. Im just 23 and i dont know if i will ever be able to go traveling again or see the world. And i dont know if i will be able to find a job, where i can manage my diet , stress etc. or even a partner, that will accept the situation im in and how i have to live in order to stay healthy. I hope, there will be some other possibilites in the near future, cause i dont know if i will be able to be this restricted in the longterm/forever.

Gabes-Apg · Post by **Gabes-Apg** » Sun Oct 25, 2015 12:51 pm

Louis
I am confident you can travel again....

In early days of my MC life, I travelled from Aus to France and worked there for 3 weeks...
Travelling with food intolerances has got way way easier compared to 4-5 years ago.

With a healed gut and healthy cells life is pretty good. I can even have small serve of gluten and not have major reaction.

DJ · Post by DJ » Sun Oct 25, 2015 3:02 pm

Lucy, Learn how to REALLY eliminate gluten. It's not easy. You may think you have it down to a science and learn that it's still "sneaking" in your diet. I've learned to do a lot with turkey and sweet potato and winter squash remain a big part of my diet. My Integrative Medicine Practitioner believes that the inflammed state of my intestines makes everything flair. I wonder what your results would look like after a year of eliminating your biggest offenders, using a very careful diet!

Lucy_B · Post by **Lucy_B** » Sun Oct 25, 2015 3:16 pm

Thanks so much, everyone! Appreciate the scoring clarification, Tex. Perhaps one thing worth mentioning is that I recently tested positive to turkey, avocados, oats, carrots, and cinnamon on an allergy test. But the allergist admitted that I may still be able to eat these foods without issues, since IgE (?) is not a great indicator of true food sensitivity. What do you think? I've been avoiding those items since I got the results about a month ago, but I'll be damned if I'm gonna cut out my entire food supply, lol. My goal is to follow the AIP as closely as possible. It won't be easy, but I am desperate for healing and committed to this process. :) I still have strong hopes that the LDN will help with increased antibodies/inflammation, as well. My Rx is supposed to be ready tomorrow, I believe. My plan is to start with 1 mg. and titrate up by 1 mg every 7 - 10 days until I get to a good level. I'm gonna stop the Imodium, too, so I can gauge if the LDN is truly working.

Louis, reading your story is comforting. 23 is the age when I first started developing MC symptoms, but no one knew what it was. Crohn's was suspected at first, then I got an "IBS" label slapped on me. I cut out a lot of foods back then, but nowhere near as many as I probably should have. I'm glad you've figured things out early and are on the road to recovery! I have the same fears as you with regard to traveling, working, socializing, etc. Thank you for putting our minds at ease, Gabes. :) Oh, and I totally know what you mean about finding a partner who can accept the situation. I've been with my husband for 14 years. We have a wonderful, loving relationship, and yet this disease has really taken a toll on us at times, especially recently. The miscarriages have been particularly difficult to cope with (it's all part of the same thing, in my case). But yeah, the diet part can be a bear for some loved ones to accept, especially when food is such an integral part of fellowship for some people. My southern family, for instance, believes that food = love and we do a lot of celebrating with it. Well, now I'm about to truly love and celebrate myself by giving my body the food it needs to heal. :)

Thanks so much to you all for your guidance and support! It means a lot. xo

Lucy_B · Post by **Lucy_B** » Sun Oct 25, 2015 3:21 pm

DJ wrote:Lucy, Learn how to REALLY eliminate gluten. It's not easy. You may think you have it down to a science and learn that it's still "sneaking" in your diet. I've learned to do a lot with turkey and sweet potato and winter squash remain a big part of my diet. My Integrative Medicine Practitioner believes that the inflammed state of my intestines makes everything flair. I wonder what your results would look like after a year of eliminating your biggest offenders, using a very careful diet!

Hey, DJ! For sure, strict elimination of gluten is my #1 priority at this point (has been for a couple months now). It seems logical that getting rid of the biggest offenders might help minimize the immunological impact of other foods, in my mind, since it should (in theory) have the biggest effect on inflammation. I'm gonna attempt the autoimmune paleo protocol, but if I get depressed/emaciated and have to add back some other foods, it definitely won't be gluten (or dairy/soy/eggs ;) Here's hoping!

Lucy_B · Post by **Lucy_B** » Sun Oct 25, 2015 3:27 pm

tex wrote:Turkey, lamb, duck, goose, rabbit, pheasant, quail, venison, etc. will be your best options for protein sources.

P.S. Tex- what about seafood? Is all fish out because of the tuna sensitivity? While I don't ever eat tuna, I do eat a ton of salmon. And occasionally shrimp, scallops, and other shellfish. And tilapia, when the mood strikes. What do you think? I currently eat a lot of lamb (at least once per week). Not sure I can find any of those game meats where I live. Oh well.

HappyBird · Post by **HappyBird** » Sun Oct 25, 2015 3:51 pm

Hi Lucy B........

Sorry to hear about our results. It's tough to get news like that but what can we do other than work with what we have. We have an inner strength and we can call on, and also important, you have the support of this forum and it's members.

No need for me to add anything, the others have done a very good job.

Do your very best for your health. Our bodies are amazing at bouncing back.
Hugs, Jen

Post by **tex** » Sun Oct 25, 2015 4:15 pm

Lucy wrote:But the allergist admitted that I may still be able to eat these foods without issues, since IgE (?) is not a great indicator of true food sensitivity. What do you think?

I'm impressed by your allergist, because she/he seems to be well ahead of most of her/his peers. Most allergists will not admit that those tests are not reliable for digestive issues. Kudos to her/him. I believe that her/his statement is generally correct, and IgE reactions will be a problem only if you have above average mast cell issues. Remember that the EnteroLab stool test results always trump blood or skin tests for what happens in the gut. If you should turn out to actually be sensitive to turkey and/or carrot, that would be history-making, because I believe you would be the first among all of the members here.

Lucy wrote:P.S. Tex- what about seafood? Is all fish out because of the tuna sensitivity? While I don't ever eat tuna, I do eat a ton of salmon. And occasionally shrimp, scallops, and other shellfish. And tilapia, when the mood strikes. What do you think?

If I remember correctly, EnteroLab says that most people who are sensitive to tuna are also sensitive to salmon, but that probably isn't chiseled in stone. Shellfish should be safe for you, and probably tilapia and certain other fish will be safe.

Remember that the "game meats" don't actually have to come from wild animals. Farm-raised turkey, duck, goose, pheasant, quail, rabbit, venison, etc., has the same DNA (and therefore the same protein molecular structure) as the wild versions of those animals. Also remember that foods that cannot be found locally can almost always be ordered online, and some members here use that option.

Tex