Cautiously optimistic but need help w/latest enterolab

[tiffanyvaughn]

Hi all,
I've been following the super simple stage 1 but mainly just meats/fats now for a month. A little bit of banana, apple, pear, kiwi, but no vegetables. Way less bloating, gas, discomfort. Which seems crazy, but maybe the lectins? Fiber? even in the peeled, seeded soft cooked zucchini, carrots??

Based on my original enterolab results, I've also been having cashew butter as a source of fat and a little protein/carb since it was a 6 on the results. Also coconut butter.

Most of my meats are turkey thigh, grass fed beef roasts or fatty cuts like short ribs, cooked long and slow in crockpot, pork shoulder roasts, and lamb. I have had salmon, and other fish, not tuna, but not much based on what Tex said about reactivity with tuna means probably reactivity to other big salt water fish like salmon.

Since my last post a few weeks ago, the extreme WD subsided(I think adding fats definitely helped, Tex, thank you!), and things have progressed to dare I say every other or every few days I'm getting ribbon stool! This is what was starting to happen before earlier this year with the strict AIP paleo, but I didn't know what was going on. Now, thx to Brandy, Tex, others, I see that that is headed in the right direction.

I decided to do another enterolab, same as my original one a couple of years ago; B2C2(vegetarian panel) and C3meat panel, just to get most comprehensive profile, and based on stuff I ate this summer, and see where I was at. These are the results, and what I am most confused about is why did cashew go up so high when it was totally ok before? Potato went up into a 1plus when it was below 10 before, walnut went way up, almond went down, and sesame is less than 10 when it was a 15 or higher before? And I have had sesame here and there. The meats are most confusing! What the heck do I do about that?? Especially in light of the meats seeming to be helping right now?

I see anti gliadin is still high, down from my original value of 233, but still. I've been super careful too about preparing my family's food, washing hands, separate cutting board, knives, pans, etc.

The meats, all 4 of them, were only in the 1+ category before and the order was tuna, chicken, beef, pork. Now they are in the 2+/3+??

Is it possible that as the interpretation piece says, that my immune system is working better, less exhausted, and therefore some of these values are higher because of that?

So I'm not sure what to do, given these values! Tex, please help! And Brandy or anyone else experienced with what might be going on and what might be the best course of action. Thank you so much!!

Quantitative Microscopic Fecal Fat Score 320 Units (Normal Range is less than 300 Units)

Fecal Anti-gliadin IgA 103 Units (Normal Range is less than 10 Units)

Fecal Anti-Oat IgA 13 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 17 Units (Normal Range is less than 10 Units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 5 Units (Normal Range is less than 10 Units)

Mean Value 11 Antigenic Foods 17 Units (Normal Range is less than 10 Units)

While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows:

Food to which there was no significant immunological reactivity: Food to which there was some immunological reactivity (1+): Food to which there was moderate immunological reactivity (2+): Food to which there was significant and/or the most immunological reactivity (3+):
Rice
Sesame Seed
Corn
Almond
White potato
Milk
Cashew
Walnut
Egg
Soy
Garbonzo Bean


Within each class of foods to which you displayed multiple reactions, the hierarchy of those reactions detected were as follows:

Grains:
Grain toward which you displayed the most immunologic reactivity: Corn

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

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.

C-3) Antigenic Meat Panel

Mean Value 4 Antigenic Foods 33 Units (Normal Range is less than 10 Units)

While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows:
Food to which there was no significant immunological reactivity: Food to which there was some immunological reactivity (1+): Food to which there was moderate immunological reactivity (2+): Food to which there was significant and/or the most immunological reactivity (3+):
None None Beef
Tuna
Pork
Chicken


Pancreatic Elastase Stool Test

Pancreatic Elastase Stool Test (Fecal Elastase) Pending (Normal Range is greater than 400 µg/g feces)

When I copied/pasted, it didn't come out the way it looks on results page, so here is the breakdown:

the 11 foods
no signif reactivity= rice and sesame seed
1+ corn, almond, white potato, milk(in order of reactivity)
2+ cashew
3+ walnut, egg, soy, garbanzo bean

Meats
no signif reactivity=none
1+=none
2+=beef, tuna, pork
3+=chicken

[tex]

Is it possible that as the interpretation piece says, that my immune system is working better, less exhausted, and therefore some of these values are higher because of that?

Yes, the immune system becomes more sensitive to other foods that produce antibodies as anti-gliadin antibodies decline. Anti-gliadin antibodies have a 120-day half-life, so it usually takes years for anti-gliadin antibodies to decline to normal. Most other food antibodies have only a 5 or 6-day half-life Your anti-gliadin antibody results appear to be on track.

Regarding changing result values over time, I was not sensitive to soy in my first test, but a few years later, soy scored relatively high.

Based on your results, I would continue using turkey and lamb. If you want more variety, use venison, antelope, rabbit, duck, goose, pheasant, quail, emu, etc. Don't use bison, because these days, most bison have some domestic cattle DNA. Looks like rice is safe. Corn might be OK if you only eat it occasionally (not every day).

Those are my impressions, FWIW. Sorry for the late reply — it's been a busy day for me.

Tex

[tiffanyvaughn]

Thank you Tex, I appreciate it! I will go with what the current results say and stay with lamb and turkey. Couple of other questions:

Is it also possible that by eating a lot of a food that previously showed no signif. reactivity, a problem can be created? Meaning, I've been eating a fair bit of cashew butter, and I'd say at the time of the first enterolab, not very much, maybe occasional here and there. Or is this possibly what you have explained about, that once the immune system has less of the primary poison to deal with and maybe some healing has occurred, that it can then go on to deal with the next inflammatory food or thing?

Now that sesame is showing no signif. reactivity, is it safe to assume that I can eat a fair bit of this, even though it was a higher reactivity originally?

Do you know why or have a theory as to why enterolab does not test for sensitivity to other common vegetables/fruits?

Is it possible that running or any physically demanding exercise would cause mast cell degranulation in the intestines and get the WD going?

Can the fluctuations of estrogen/progesterone, (maybe cortisol too?), cause fluctuations in consistency of BM's and amount of them? Meaning cyclically, even though I'm in menopause, things are definitely looser and more frequent every couple of weeks and the same goes for less watery/loose and fewer of them for me once those two "hormonal times" have passed. I've tracked this for a long time, and it seems like there is a pattern for sure. If this is true, will this get better as healing and inflammation calm down? Or is this just the way it is?

I hope this isn't too many questions! Thank you so much for your time.

Tiffany

[tex]

Is it also possible that by eating a lot of a food that previously showed no signif. reactivity, a problem can be created? Meaning, I've been eating a fair bit of cashew butter, and I'd say at the time of the first enterolab, not very much, maybe occasional here and there. Or is this possibly what you have explained about, that once the immune system has less of the primary poison to deal with and maybe some healing has occurred, that it can then go on to deal with the next inflammatory food or thing?

I'm not sure whether there's an association or not. I note that when I became soy-sensitive, I was mostly (though not completely) avoiding soy. The issue was brought to my attention because I was eating a lot of peanuts (a legume), and one day I suddenly had ileus (my digestive system suddenly stopped all activity). An EnteroLab test confirmed soy sensitivity.

Now that sesame is showing no signif. reactivity, is it safe to assume that I can eat a fair bit of this, even though it was a higher reactivity originally?

Theoretically, yes, but personally, I would be very reluctant to experiment with sesame until I was in stable remission for a while. Didn't I read somewhere that sesame is a very common allergen for a lot of people?

Do you know why or have a theory as to why enterolab does not test for sensitivity to other common vegetables/fruits?

They offer tests for the most common problems. Very low-percentage risks (for most people) are not considered because if the Lab developed and offered those additional tests, that would run the cost of the panels up so high that most people would consider the cost prohibitive and wouldn't buy them (the old law of diminishing returns).

Is it possible that running or any physically demanding exercise would cause mast cell degranulation in the intestines and get the WD going?

Yes, runner's diarrhea in otherwise perfectly healthy people is rather common when runners really exert themselves. This is presumably associated with primal instincts that were invoked during human evolution when someone would run for their life trying to escape a short-faced bear, or some other common human predator back then. In such a situation, to conserve energy, the enteric nervous system (our "second brain") shuts down digestion completely, causing any food in the system to spoil (which may later cause diarrhea). A heightened threat would cause the enteric nervous system to purge the contents of the intestines, in order to reduce weight. In extreme cases, the flow of blood to the intestines will be halted, so that more blood is available to supply the muscles used for running. If this continues for too long, a serious (life-threatening) condition known as ischemic colitis will be the result, and intestinal tissue may start to die.

Can the fluctuations of estrogen/progesterone, (maybe cortisol too?), cause fluctuations in consistency of BM's and amount of them? Meaning cyclically, even though I'm in menopause, things are definitely looser and more frequent every couple of weeks and the same goes for less watery/loose and fewer of them for me once those two "hormonal times" have passed. I've tracked this for a long time, and it seems like there is a pattern for sure. If this is true, will this get better as healing and inflammation calm down? Or is this just the way it is?

Yes they can. Here's an extreme example from my book:

Certain hormone levels are apparently linked with MC. Pregnancy, for example, causes drastic hormonal changes in a woman’s body. Doctors have long been baffled by the fact that some women experience remission from the symptoms of MC during pregnancy, while others find that their symptoms become much worse.

Research shows that during pregnancy, very high concentrations of DAO are produced by the placenta (up to 500 times as high as the normal level) (Morel, Surla, & Vignais, 1992).15 It seems rather logical to conclude that if mast cell activation disorder is a prominent cause of the patient’s MC symptoms, then clearly the huge increase in DAO during pregnancy should greatly enhance the odds of remission, whereas if mast cell issues are not a significant factor in her reactions, then the other hormonal changes (estrogen and progesterone for example) will tend to cause the MC symptoms to become worse for the duration of the pregnancy.

It’s known that birth control pills can trigger MC symptoms, and hormone replacement therapy (HRT) can also trigger symptoms. Even the transdermal patches used for HRT by some women can cause a flare of MC symptoms, and in those cases, remission will be virtually impossible to attain unless the hormone replacement treatment is discontinued, or replaced with an alternate method of administration that does not trigger MC symptoms.

Here's reference 15 from that quote:

15. Morel, F., Surla, A., & Vignais, P. V. (1992). Purification of human placenta diamine oxidase. Biochemical and Biophysical Research Communications, 187(1), 178–186. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/1520 ... t=Abstract

But magnesium is also involved (as a result of hormone changes). When estrogen and progesterone levels go up during the second half of the menstrual cycle, the magnesium level declines dramatically. This can cause spasms in the arteries that supply the brain with blood, and presumably, this is the cause of most PMS symptoms and migraines. All of these symptoms can be reduced by increasing magnesium intake (in order to significantly increase magnesium reserves) before the symptoms develop. It's common to crave chocolate before menses. This happens because dark chocolate (with at least 80 % cocoa content) contains more magnesium than any other type of food. So while PMS symptoms may occur in response to hormonal changes, they're actually caused by a magnesium deficiency.

I hope this helps.

Tex

[tiffanyvaughn]

Thank you Tex, all of those responses were very helpful!! It's a little hard to get my mind wrapped around the possibility that even though my perception of exertion is far below what I would consider "fight or flight", my guts are obviously quite sensitive and think otherwise.

I had definitely forgotten about the magnesium connection with the estrogen/progesterone fluctuation, especially the second half of the cycle, that totally makes sense. And that's when I get the nasty headaches.

Just as a FWIW, I was looking through a few different threads and noted yours and other experienced members' various comments about how "we don't need variety, we just need protein, fat, enough calories" until in remission and then slowly re-introduce. And Jean's about looking at food as medicine, not entertainment. It was REALLY helpful. This can get discouraging and boring. Very grateful to have so much help and support here!

Tiffany

[brandy]

Hi Tiffany,

It sounds like overall you are doing great if you are getting ribbon stool!

Just as a FWIW, I was looking through a few different threads and noted yours and other experienced members' various comments about how "we don't need variety, we just need protein, fat, enough calories" until in remission and then slowly re-introduce. And Jean's about looking at food as medicine, not entertainment. It was REALLY helpful. This can get discouraging and boring. Very grateful to have so much help and support here!

This is a disease you don't want to go backwards with. I'd stay the course on what you are doing and would
advise you to keep doing what you are doing until you get Normans. Don't be in a rush to add in foods.
Gabes stage 2 diet section is worth a read. I'll post it below. Until you get consistent Normans like for 3-4 weeks
I'd keep doing what you are doing with the minor tweaks you and Tex discussed. Again, you don't want to
go backwards.

Going into the holiday season here are some tips: pre eat at your house before you go to a party.
If you bring a dish bring 1-2 you can eat and throw some extra food in your purse.

At Thanksgiving and Christmas go all out on the foods that you can eat.

You referenced Jean above and both she and I had disordered eating prior to MC diagnosis. It is tough
to narrow down your food groups and be okay with it but it can be done.

Tonight for dinner I'm having jovial GF pasta, jarred GF red pasta sauce, GF meatballs that the boyfriend
made and froze, and a salad with olive oil and vinegar. Understand that this is very advanced MC eating.
It probably was maybe 2-1/2 to 3-1/2 years of healing until I got to this point. The tomato sauce
and salad (raw) were a no go for a long time.

I was age 50 at diagnosis and am age 59 now. I still do better eating unprocessed. I have some GF bread
here and there but I do better with potatoes, rice and sweet potatoes. I stay clear of GF bars (Lara bars etc.)
They just scare me. I'd probably be okay with a made at home bar.

I got very sick eating a bag of nuts from the Charlotte airport. Now I travel on airplanes with a banana and
bag of my own trailmix which is generally a mix of nuts (not peanuts) and some raisins and salt.
I have 40 flight legs on American airlines this year so it can be done.

We get a lot of women runners on the forum. You might be interested doing a search of women running
on the forum and read those threads.

I'm glad you are doing good! Stay the course, stay the course, stay the course!

[brandy]

gabes stage 2 diet plan

https://perskyfarms.com/phpBB2/viewtopic.php?t=22328

[brandy]

Do you know why or have a theory as to why enterolab does not test for sensitivity to other common vegetables/fruits?

Dr Fine who owns Enterolab has MC like us. This is just a guess but I suspect one reason enterolab does not
test vegetables/fruits is that when we are not in remission all vegetables/fruits are problematic for us and
contraindicated due to fiber. Dr. Fine, having MC, would know this. If you can't eat a veggie or fruit due
to the fiber content (and sugar content in fruits) why waste someones monies testing for it.

[tiffanyvaughn]

Brandy,
Thank you so much for responses. I too have had disordered eating prior to MC diagnosis. I am slowly getting used to and ok with SUPER simple. It is a struggle at times, but I'm seeing how it can be done.

And now I'm back to really loose, "the usual" again:((. I'm encouraged that I was seeing some ribbon stool though. It was like a day or two of a little more form/mud or ribbon, then another couple days loose D, repeat, for like 2-3 weeks. And overall less frequency, like 2-4 bm's, as opposed to 6-7. Now it's back to at least 7-10 days loose D in a row. If I don't run, it's 2-3bm's, if I run that usually makes another 2-3 come out. I'm also in the phase of the hormonal fluctuations where I'd kind of expect a bit looser. So I'm just trying to be patient, wait it out, stick with the plan.

Is this looking/sounding pretty typical?? Couple days ribbon, then some stretches of loose D?? How long might this last?? This is what was getting so frustrating and puzzling to me before, earlier this year on AIP(but too many foods prob.), too hard to track what was causing what.

Thank you for the holiday tips, I am sure this can and will be a tricky time. Good to be armed with preparation!

That makes sense too about not testing for fruits/veg knowing they are likely bothersome while not in remission.

I will def look for threads on the runners in this group.

Tiffany

[brandy]

Hi Tiffany,

I've been pondering my response for the last several days, thus the delay.

The good news is that you are getting some MCmud/ribbon stool some days. Since you are getting MCmud/ribbon stool
some days I'd be inclined to keep doing what you are doing food wise. I have to wonder if the ribbon stool days
are related to your cycle.

There are a lot of ups and downs with getting into remission. I reread your intro post and it looks like you
have suffered from MC for a long time. Be aware that it can take awhile to reduce the inflammation to
kick into remission.

You asked how long until you get MCmud/ribbon stool. This is a very, very random guess but I'd say
anywhere from 2 days to 3-4 months.

My personal experience (twice) was I had to get to WD mostly once in the morning but sometimes
twice in the morning and then I kicked into consistent MCmud/ribbon stool.

A lot of us with MC (not all) are Type A people. We have a lot of engineers in our club. We have a lot
of very driven people. We get a lot of women runners although I think you are the only one currently posting.

Since most of us are type A and stress makes MC worse consider the following to reduce stress/inflamation.

1. Get more sleep.
2. During my initial flare in 2010 I got the WD down to 1-2 times per day through diet. I started going
to a meditative yoga class 2 -3 times per week at 6:00 am before work. I did this for about 8 weeks
and then kicked into daily ribbon stool.
3. During a reflare of 9 months in 2017 that I thought I would magically kick out of I had WD once a day.
After 9 months of no improvements I started setting my cell phone every 2 hours. When my alarm
went off I reset the alarm for 3 minutes. I would do a meditation/deep breathing/prayer kind of thing for
3 minutes to help reduce stress. I did this every 2 hours. After doing this for about 5 days and also
switching to the few foods diet I kicked into ribbon stool (this was after nothing happening for 9 months.)

I know some of this sounds new agey and possibly could have even been placebo effect.

I hesitate to mention this as my sister is a woman runner and she has trained at US Olympic camps and
competed in the Moscow 1986 Goodwill Games but I'd consider maybe a 2-3 week break in running
(not permanent) to see if you can get any improvement. Again, I hesitate to even mention this
because I know how much running means to my sister.

Since you are getting ribbon stool on some days I don't know that I would change my diet.

Keep us posted. Brandy

[tiffanyvaughn]

Brandy,
Thank you so much for the well thought responses.

I definitely feel like there is a hormonal component to the times of mud/ribbon stool. My only hormonal support right now is progesterone cream(over the counter, not prescription). I don't detoxify well due to MTHFR(homozygous for A1298c, not the homocysteine one) so estrogens or others not a good idea according to my gyn/functional med doc. I'm amazed that there is still so much influence from hormonal fluctuation despite being in menopause!!

I can see how a lot of us are type A's, driven, achievement oriented and vulnerable to stress. I'm right in there, so those stress reduction tips are very helpful. I don't think new-agey at all. I like the setting alarm part for every couple hours to do some meditation type thing. That's totally amazing that after 9 months of no change, you were able to get remission in 5 days doing that (and few foods diet). I'm doing a yoga/breathwork/meditation class once a week and it definitely is calming.

I've been thinking about taking a short break from running to see if it makes any difference, much as I don't really want to. I can completely relate to your sister in how much I like it and the side benefits. It really is not fun to have to "pull over" at least 2 or 3 times during a run though, so it's a catch-22. I am physically totally capable of doing other stuff though, and for the sake of healing it's worth a serious look.

Do you have totally normal BM's now, as in not ribbon stool or MCmud? If so, how long did it take to get there? Or is there never really a "back to normal" on this front? And Tex, any others, please feel free to chime in!

A couple other questions for you, Tex, any others:

My latest enterolab results for fecal elastase came back and the value is 427(over 400 is normal exocrine function). This seems pretty low/borderline and much lower than my initial one a couple of year ago(561). Does anything over 400 mean you're good to go, pancreas is working normally, or is there significance to the number value? If so, is there anything I can or should do about that? I've used enzymes and betaineHCL and they don't seem to make any difference even at high doses.

I've noticed I sometimes get a very acidic burning with the D and this is preceded by huge urgency. This seems to mostly be the episodes during a run, but not always, it can be other times as well, like the usual morning D. And not every D, even running has that acidic/burning feeling. Is the acidic/burning from bile? As in sometimes there is BAD and other times not?
Could times where there's not enough cortisol around for the intestines to use to allow bile acids to be resorbed be causing the bile to move on into the colon? As in hormonal fluctuations where cortisol is needed elsewhere? Or specifically related to the running, when the cortisol/adrenaline is kicking in, that doesn't allow the bile to be resorbed, everything gets pushed into the colon too fast, then comes the D??

Thank you all for the help and responses!!

Wishing everyone a peaceful, healthy, beautiful Thanksgiving holiday!!

Tiffany

[tex]

Hi Tiffany,

Those are some tough questions, but I'll take a stab at the answers. Personally, I wouldn't be concerned about pancreatic function at this point, because many of us test well below normal on pancreatic enzyme levels when MC is active. Those low levels virtually always resolve as MC is brought under control. Your situation is probably better than most of us.

I'm familiar with the burning/acidic feeling you describe, but I'm not sure of the cause. It might be due to various things. It can be caused by a reaction against dairy products (casein), but it can also be caused by other issues that lower the pH in the gut (such as grains). Acidosis among feedlot cattle is a major problem, for example, for cattle on a ration with a high-grain content. And of course, as you suggest, excess unabsorbed bile would do that, also. Diet might be the most important element in the equation, because of it's influence on the pH of the system.

I hope this helps. Thanks, and happy thanksgiving to you also.

Tex

[tiffanyvaughn]

Thanks Tex,
Def reassuring on the pancreatic function front.
Well, the burning/acidic feeling for sure isn't casein or grains, so huh. I'm wondering mainly because if it is bile acid, then giving the cholestyramine a shot could be beneficial. I hesitate bc it takes most of the fatty acids with it, right? which I need. I'm going to stick with the meats/fats, tiny bit of fruit for now and see if doing that a while longer will give me more days of ribbon stool.

I've read that doing super low carb can be not so great for the adrenals and adrenal exhaustion long term. And that it can throw other hormonal systems out of whack(thyroid?). I have also read and agree with what you've said about not actually needing carbohydrates. Do you have any thoughts on how to reconcile this contradiction?

Thank you again,
Tiffany

[tex]

Low-carb causing adrenal problems is news to me. But I'm not an authority on all the details of low-carb diets. Jean has been doing it for more than a few years (and so have a number of other members), so she's the expert on KETO and low-carb.

Some paleo tribes ate meat and fat only (Eskimos for example), and for many/most others, carbs (from fruit, honey, or root plants) was only available on a limited seasonal basis. Probably, many paleo people only strayed from an all-meat and fat diet when they couldn't obtain enough meat. and they were starving.

Tex

[JFR]

Tex is right. I have been eating a very low carb diet for at least 15 years. I have never heard of issues involving the adrenals. There's a lot written about very low carb/keto eating that is wrong, silly, misguided. The best site for getting reliable information about low carb eating is on dietdoctor.com. I credit my low carb way of eating along with the information I got from this site for my current state of good health. You can read my success story here: https://perskyfarms.com/phpBB2/viewtopic.php?t=22587

Jean