EnteroLab Results-All input/advice needed & appreciated

hollyweb · Post by **hollyweb** » Fri Jul 22, 2016 3:52 pm

Well, I received my EnteroLab results and feel totally overwhelmed. I've not seen other tests this high, plus I have the mast cell / histamine issues. EnteroLab was really sweet; they even called me and I received (unplanned) what turned out to be about a 20 minute consultation with one of the techs. They were very concerned about me. I just don't know what I can eat! And what in the world I could take with me when I do go out. If anyone has any ideas about foods to eat and what to drink, I'd be so grateful to hear them.

The good news is that I do feel my gut is healing. I've been off the Budesonide 2 months now, and about 7 months of being 99% gluten, dairy, soy, egg and almond free (the 1% was before I found this board and I'll do my best to ensure it doesn't happen again!) and by using the anti-histamines, l-Glutamine w/VSL3 probiotics, and digestive enzymes prior to eating, the diet and using more Magnesium Oil, plus Vit D and methylated B's for supplements, I am regular about 6 days a week. Then I can tell my insides are starting to churn up again so I take about 8 Immodium on day 7 and so far that's kept me from flaring. I up the amount of antihistamines I take daily per my histamine symptoms, and I still have a lot of anxiety, brain fog, fatigue, etc.

We talked over the idea of me having the malabsorption test done for $90 more since they still had my specimen. I told her I'd already had the 48 hour fecal fat quantity test, and even though my results were below the boundary of a diagnosis, I had all the symptoms. She confirmed that their test could only show whether or not I was absorbing everything from my food, but the test wouldn't be able to say what nutrients, etc. were NOT being absorbed. She also said that by the time one has fat malabsorption, nothing else is getting absorbed well either, that the fat malabsorption was the last to show up. And, she confirmed for me that I was doing the right things for treating this condition with the digestive enzymes and probiotics (which she said Dr. Fine highly recommended, interesting).

Here are my lab results - moderators, please feel free to re-post this where appropriate. And I think this should be included in the locked test results, so when someone else has a super high result like this, they perhaps won't feel as devastated as I do now.

Fecal Anti-gliadin IgA 525 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 215 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 69 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 81 Units (Normal Range is less than 10 Units)

Mean Value 11 Antigenic Foods 68 Units (Normal Range is less than 10 Units)

Foods to which there was no significant immunological reactivity - NONE
Foods to which there was some immunological reactivity (1+) - NONE
Foods to which there was moderate immunological reactivity (2+) - Rice, Oat, Beef, Tuna, Pork, Cashew, Walnut
Foods to which there was significant and/or the most immunological reactivity (3+) - Corn, Chicken, Almond, White Potato

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

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

Nuts
Nut toward which you displayed most immunologic reactivity: Almond
Nut toward which you displayed intermediate immunologic reactivity: Cashew
Nut toward which you displayed 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. It is possible you would react to all other nightshade foods (tomatoes, peppers, eggplant), so usually all four nightshade items should be eliminated from the diet.

To my knowledge, I haven't had any corn (perhaps some corn starch got in there?), potato, almonds or beef in over 4 months, so I was pretty surprised to see reactions to them still occurring. The EnteroLab tech referred me to scdiet.org for a suggested diet, and perhaps that's a good place to start, then removing my personal trigger foods, histamine foods, etc. I was just surprised to see some dairy on there and a few other things which seem contraindicated for MC. The main thing she stressed to me is that Dr. Fine doesn't eat ANY grains, not even rice. I don't know what I will / would do without rice cakes! It's about the only thing that is "portable" that I know of and have seemed to be tolerating. Perhaps if I just ate less of them.

Help!! Please!!

~ Holly

jessica329 · Post by **jessica329** » Fri Jul 22, 2016 6:05 pm

How about lamb? I like lamb shoulder, it reminds me of a steak. Cornish Hen, Turkey, Rabbit (yum, tastes like chicken), Gator (depends on where you live but I'm a fan of gator too), deer. Possibly Bison (it's an iffy but I've been ok with it). Sweet Potato, root vegetables.

Jumpindogs · Post by **Jumpindogs** » Fri Jul 22, 2016 6:30 pm

Holly...I am so sorry you are feeling overwhelmed and devastated. Hugs to you!

I am a newly diagnosed LC so I don't have much experience to be able to help you but I wonder if you could make your own meat jerky for a take-along snack. It's much better to have a protein snack than a carb snack for many reasons...staying power, no sugar dump, etc. I've been struggling with portable food, too, and recently purchased a dehydrator https://smile.amazon.com/gp/product/B01 ... UTF8&psc=1 that maintains the safe temperature for making meat jerky, a jerky gun https://smile.amazon.com/gp/product/B00 ... UTF8&psc=1 and found a source for 100% ground turkey with nothing added (Aldi's).

This is the recipe I am gonna try as soon as I have a couple days with no work commitments so I can monitor the dehydrating process. I'll cut out some stuff...you'd have to nix the coconut aminos and maybe some other stuff...but the recipe should work even though modified. http://www.backcountrypaleo.com/gobble- ... key-jerky/

Gabes-Apg · Post by **Gabes-Apg** » Fri Jul 22, 2016 8:12 pm

There are other portable options...

savoury or sweet paleo type muffins made with coconut flour are grain free
there is hemp protein powder
Cold home cooked meats or jerky (as suggested by Joanne)

the overall results for gluten, dairy, soy with high numbers indicates lots of inflammation.
Have you had Vit D3 levels checked? how much Vit D3 are you taking?

as per the discussions in the other posts about various toxins/biotoxins mold etc - it could be none food type toxins that are heightening the inflammation (and making the food reactions worse) reducing exposure to external contributors is worth investigating.
Turn off all wifi /EMF devices of a night, check water supply, reduce exposure to chemicals in the home, use more natural bathroom personal products, stop using fluoride toothpaste, etc etc...

Post by **tex** » Fri Jul 22, 2016 9:22 pm

Holly,

IMO the reason why your test numbers were so high is because you have been reacting for a long time. The longer we react, the higher our antibody numbers climb.

And one of my theories about the immune system (that you won't see in the medical literature) is that "almost" removing a food from the diet (such as a diet that is 99 % GF) causes the immune system to become extra-sensitive to that antigen. This occurs because reacting to virtually every meal over a long period of time causes the immune system to become sort of "overwhelmed". While it continues to react, the reaction tends to become somewhat blunted, and more of a chronic, limited reaction because of the almost constant exposure to the antigen (or antigens).

But when a food is almost completely removed from the diet, the immune system is no longer overwhelmed (or at least it is less overwhelmed), and it tends to launch more powerful responses to each exposure. IOW, the immune system's sensitivity is increased as the antigen exposures become less frequent or less intense. This may seem counterintuitive, but if you think about a bit I believe you will see what I mean.

Many members here have posted about the increased intensity of their reactions after they have been on a restrictive diet for a while and they accidentally slip up with something that contaminates a meal. That type of reaction supports my theory.

I'm not posting this to criticize your previous diet, because you had no way of knowing that it might cause such a problem. I'm posting this to show you why your test results may not be so unusual after all. After your antibody levels have had some time to decay back down to more normal levels, you should find that you are no more sensitive than most of us.

At the moment, your immune system is practically screaming "TILT" (because of the high antibody levels), but it will slowly settle down with a safe diet, and you will find that you are on the road to recovery.

The suggestions offered by everyone look good to me, so I don't have much to add there. I'm just surprised that gator meat is available in Connecticut.

Tex

jessica329 · Post by **jessica329** » Sat Jul 23, 2016 6:46 am

No gator here, but my whole Dad's side of the family lives in the gator capital of the world- Florida!

Deb · Post by **Deb** » Sun Jul 24, 2016 6:15 am

Hollyweb, my gluten reading was also very high (510). I agree with Tex that I think I was reacting for a long while. The good news is that I reacted quickly to removing it from my diet. Within a month I was doing much better. Deb

Erica P-G · Post by **Erica P-G** » Mon Jul 25, 2016 1:31 pm

Hi Holly,

Foods to which there was moderate immunological reactivity (2+) - Rice, Oat, Beef, Tuna, Pork, Cashew, Walnut

I am looking at this line at the moment and if you feel Rice was not such a reactant for you at this time (not saying it may not be one later on) but at this time I would leave it in my diet to at least have something from the "mostly" safe for MC list to rely on at the moment.

Rotate the Pork with Cornish Hen, Turkey and even Lamb....an every 4 day rotation should be ok for now.

Try some Coconut Aminos http://www.vitacost.com/productResults. ... fgod3aAPwQ they are even on sale right now, and I would think rotating the Yellow or Red potato (steamed well ofcourse) with the steamed White Rice would be ok right now too.

This is a bare bones idea at the moment...using Cornish Hen bones or Turkey bones for a bone broth would be another good idea, that only entails bones, water and sea salt. It is up to you if you want to add a vegetable you are comfortable with.

These are my ideas at the moment....
Good Luck, I know the right combination will come to you.
Erica

crervin · Post by **crervin** » Mon Jul 25, 2016 3:01 pm

Hugs to you Holly!! The only thing I can add is duck eggs! They are a life saver. In my area, the ducks are not producing due to the heat, so I miss them greatly. Hopefully you can find some!

JFR · Post by **JFR** » Mon Jul 25, 2016 5:32 pm

crervin wrote:Hugs to you Holly!! The only thing I can add is duck eggs! They are a life saver. In my area, the ducks are not producing due to the heat, so I miss them greatly. Hopefully you can find some!

I tried duck eggs a short time ago and had my first flare of any kind in months. I had not eaten chicken eggs in over 4 years. My downstairs neighbors were happy to get my remaining 4 duck eggs (I had eaten 2).Proceed with caution.

Jean

crervin · Post by **crervin** » Mon Jul 25, 2016 9:09 pm

So sorry to hear Jean! I typically use them in baking mostly. If I eat them scrambled, its on a really good day or at night...

hollyweb · Post by **hollyweb** » Wed Jul 27, 2016 9:51 am

Thank you to everyone! I've not been able to be online for the past few days and was deeply moved to hear from so many of you!

Jessica, I've just purchased some lamb and will be looking forward to trying it. Thank you for your encouragement and advice!

Joanne, thank you for those recipes! Being able to make something like a homemade jerky that I can count on would be awesome as a portable food. I never would have thought of that! Please keep me posted on your progress, and I will start investigating doing the same as time allows!

Gabes, I appreciate your input so much. It seems like my histamine response is the most prominent symptom/s I'm experiencing right now, and I'm wondering if having a high level of toxins could be contributing to that response (in addition to foods, stress, etc.)? My Vitamin D level was tested back in February 2016 and it was >96 (ref. range 30-80 ng/mL). I take 5,000-6,000 units per day. Am having blood work done in a couple of hours which will include a histamine test (I know it's not accurate, but will provide some info I can perhaps show to a doctor) and Vit D. I've not been able to have my B6 tested, but again in Feb. my Vit B12 was >1500 (ref. range 180-914) and Folic was >24.2 (ref. range 5.9-24.8). This was after I'd found out about my MTHFR and had been taking methylated B's for over 3 months. Will check magnesium today also, it's been chronically low for (years???). Blood work in ER twice showed levels at 1.4 and 1.6 (ref. range 1.8-2.5). They gave me IV magnesium both hospitalizations; my hope is lab results today will show that the daily transdermal magnesium I've been using since March 2016 is working.

Thank you also for the idea of the hemp protein powder; I seem to be tolerating hemp well, and maybe I can look into hemp flour, too!

Tex, thank you as always for your insights. I understand what you mean. I do wonder, sometimes, if we aren't shooting ourselves in the foot by completely eliminating foods/food groups and then causing a backlash type of reaction if we inadvertently have a small amount later? This is confusing to me; Erica addresses it in her post, and I'll comment on that too. I guess I'm wondering if it is better not to be so restrictive ... could that help avoid creating more "triggers"? As I said, a bit confused. Also confused still about the histamine issues. I understand the antihistamines are just a patch, but I'm not able to reduce my MC symptoms without them. Maybe as time passes and I eliminate the main histamine foods and toxins I can, I won't need them as much?

I have been guilty of keeping my leftovers in the frig and re-heating them over a period of a few days. Am I understanding it to be best to do the big weekly cooking, then freeze individual portions of leftovers instead of refrigerating them to reduce histamine content? If so, can you microwave the individual leftovers, or do you need to thaw them first (and if so, what's the best way?)? When re-heating, is microwave safer than other methods? My research shows inconsistencies on these questions.

Deb, thank you so much for your kind words and support! It really helps to hear from someone else who had such a high level of reaction, and I'm so glad to hear you are doing so much better!

Erica, thank you for all your great ideas! I know I need to rotate my diet more, and do more with the freezing, etc. I've not had the cooked rice in awhile, so the main rice in my diet prior to my EnteroLab results were the plain rice cakes, which were so valuable for their portability. It's so hard to know what to do; rice is a 2+ reactivity for me, so it is high, but in the big scheme of things, in my overall results it is "lower". I'd like to keep some rice cakes in my diet, yet I fear I'm so toxic right now, I don't want to do anything that would add to it! Is there any type of similar product that is completely grain-free, I wonder? Coconut is something I do react to, in all its forms, unfortunately. Haven't tried the bone broth yet (it's HOT right now, in the 100's!) but will do so. That would likely be quite good for me. Any recommendations on the type / cut of those meats that is best to purchase for this?

Martha E and Jean, thank you for the posts and hugs! I may find the courage to try some duck eggs at some point, and I'm glad that they work out for some of us! Hugs back!

Thank you again to everyone!

Hugs,

~ Holly

Gabes-Apg · Post by **Gabes-Apg** » Wed Jul 27, 2016 1:43 pm

Holly, I think there was the initial shock with the results and now you sound a bit more at peace with them...

B wise, are you taking the active forms of B12, B6?
the high B12 blood test result might be that you have lots of inactive B12 in your blood, that has not converted to active form needed for methylation
the same with B6. My histamine issues resolved when I fixed deficiences (Vit C, magnesium, zinc) and started the active B6. (which i was very deficient in)

And as we have discussed, the non food triggers might be more of an issue for you compared to others. It has taken me a 3 years of focussed supplement protocols to reduce my toxin load. I am 6years plus post Dx, and sticking with bland eating plan and only when I fixed methylation cycle and cleared excess toxins have I seen good improvements. For the first time in over 20 years I have had near normal poop every day for 2 weeks. prior to this my poop was borderline MC mud, alternating with slight constipation, and changed day to day

Where i live now is the first time in over 20 years that i live in a low toxin environment, fresh air, minimal pollution, minimal EMF/WiFi/radiation, rain tank water, house with no mould, no excessive powerlines, no major power box/fuse box attached to the house (it is on a pole away from the house). reasonably healthy work place (no mould, fresh air, clean air conditioners,) and no toxic co-habitants. i turn off wifi of a night and there are no electronics whatsoever in the bedroom to optimise good quality sleep. bathroom products, cleaning products are as natural as my budget allows.

hollyweb · Post by **hollyweb** » Wed Jul 27, 2016 3:34 pm

Yes, you are right, Gabes!! The B vitamins I've been taking for months now are all the methylated form - is there a difference between that and the "active" form of which you speak? Also, since the B's are water-soluble, could you recommend a good "active" B6 supplement, and / or do you think that might be helpful? The B supplements I take have a much lower percentage of B6 than the other B's. Also, I take a methylated B12 sublingual tablet daily, so that's another reason my B12 is so high. Maybe all my B percentages need to be adjusted due to the MC and histamine issues?

I am definitely looking at ways to reduce my toxins; not much I can do with powerlines and fuse boxes, but am slowly transitioning as much as I can to the safer products, etc. There's a skin care line my ND recommended that I really like, Andalou 1000 Roses, have you heard of it? I've started taking 1,000 Vit C daily again, as you've mentioned that before. Since MC symptoms have caused me to greatly reduce my greens and produce, it's likely I'm not getting nearly enough zinc. Would you recommend supplementing that, also, and is there a brand or form you like?

De-toxing options are limited for me right now. My GI doctor refused, but my PCP did write me a prescription for the Cholestyramine, which Polly mentioned does help with some de-toxing as well as the BAM. I have it on hand, but don't want to start it until after a (local) 3 day seminar I have coming up, as I understand that it definitely affects the intestines and when it works, fantastic ... and when it doesn't, it could make symptoms worse. I plan to give it a month trial and am hoping for the best!

And I am so so so so so glad that your symptoms are much better!!!!!! You have been through so much for so long, and we on this board are truly blessed to learn from such a powerful and resourceful MC coach!!!!

~ Holly

Gabes-Apg · Post by **Gabes-Apg** » Wed Jul 27, 2016 3:47 pm

trying the cholestryamine is a good start
Did you see the discussion that ERica and I had in the other post about Diatomaceous earth?
bottom of page 10 of this thread http://www.perskyfarms.com/phpBB2/viewt ... &start=135
this might be another option that may work

I would not suggest supplementing with zinc, unless you have had zinc and copper blood levels checked.
(i have additional condition that causes zinc deficiency)

like anything, we cant do everything perfectly and avoid ALL toxins. a good aim is to reduce as many as you can, and still maintain happy lifestyle, no financial stress.
I havent heard of Andalou 1000 roses. my skin care regime is coconut oil, cleaning with betonate clay, and using coconut based shampoo and conditioner.

methyl b12 sounds right. Are you taking B6 or P5P? P5P is the active form of B6 and has helped me alot. (i get Thorne P5P from iHerb)

Detoxing wise, it doesnt have to be a full on detox program - just following low inflammation gut healing eating plan, taking the right key nutrients (like Vit C, magnesium, optimising healthy methylation cycle with active B's etc) epsom salt baths, lots of 'clean' water, and reducing toxin contact is a fantastic start.

like everything in MC world, it is trial and error to figure out what works for you, what your body needs most, and being patient. finding the slightly delicate happy place inbetween overthinking/being slightly OCD, and doing nothing.. while still working, living life etc..