Anyone else get WORSE with dietary restrictions of Enterolab?

[MomLady]

I really appreciate the time and energy people have put into this board to share knowledge and tips on dealing with MC. When first dealing with this disease, I read here about the recommended approaches to improve things, and read Tex's book as well. So don't mean to sound ungrateful or whiny when I say all the dietary interventions didn't seem to work for me. I would like to understand why, so I can better proceed with healing.

What would be the model to explain how my symptoms could get WORSE on a limited diet? (like 3x/day pudding type stools in spring 2020 to winter/spring 2021 was 20x a day watery). Has anyone else had this experience? I really don't understand. I did several Enterolab tests, despite having read other sources' concerns over their legitimacy, figuring hey, if it worked for me and gave me the needed push to cut out big food categories like gluten and dairy, it was worth a try. I finally stopped this terrible slide by beginning budesonide, and it was nearly instant improvement. I had fought so hard to handle this with diet alone, but only succeeded in making everything worse.

Does anyone else have disappointing results following Enterolab recommendations? There are several celiac websites that share concern over the lack of independent verification of their methods. And this tidbit from reddit, which obviously is just anecdote and could be entirely fiction, but who knows? ( https://www.reddit.com/r/glutenscience/ ... is_a_sham/ ) . I'm not trying to start a flame war as I know many people saw improvement with Enterolab-inspired dietary changes. Just trying to figure out how it didn't work for me.

thanks,
Janet

[Gabes-Apg]

my thoughts

the internet is FILLED with crap, only about 5% is useful and substantiated.
for any issue in the world you can find various articles to support or not support these issues.
what i do know is that enterolab testing has helped thousands of people on this site.

whether you do enterolab testing or you do trial and error
if you are still reacting then there is something your day to day life that you are reacting to

there is way way more to MC, healing than just the food items

- what are you drinking each day?
- did you purchase new cookware and utensils?
- are you sharing the kitchen with others that are still eating gluten etc
- what supplements are you taking - are you taking Vit D3 and magnesium
if so how much and are you spreading the magnesium dose through the day?
- have you checked bathroom products like shampoo etc for wheat and soy ingredients
- are you taking medication for other health issues?
- and for women, hormones are a big factor in our gut health! are you going through hormone change?
- do you have stressful situations in you day to day life at the moment?
- have you noticed histamine type symptoms?

this is just a starting list, there are many aspects of daily life that contribute to inflammation and MC mud poop.
for some (mmmm 1/3 of people) changing diet is enough for others we need to review and modify many other factors in our day to day life.

[MomLady]

Thanks, Gabe, for your detailed reply. I have read many of your replies on the board and am glad you are so thorough. In response:

what are you drinking each day?
water, coffee, black tea, sometimes a seltzer

did you purchase new cookware and utensils?
I cook with my own GF stuff and keep my cooking utensils separate, have my own toaster, etc.

are you sharing the kitchen with others that are still eating gluten etc
Yes, I have a husband and 3 kids, though I do nearly all of the cooking. There is no loose flour in house. I am diligent about wiping up crumbs, and use my own GF cutting board.

what supplements are you taking - are you taking Vit D3 and magnesium
Been on Mercola D3 spray (5000 IU) daily. Topical Mo Maggies lotion, about 1 tsp or more in morning. I forget the exact dosage that correlates to but I seem to recall it was ok as per this board.

if so how much and are you spreading the magnesium dose through the day?
Not spread out, didn't know that

have you checked bathroom products like shampoo etc for wheat and soy ingredients
Yes, as far as I know all is ok

are you taking medication for other health issues?
Fluticasone (Flonase) for nose, should be ok

and for women, hormones are a big factor in our gut health! are you going through hormone change?
Not that I am aware, though it can't be far off. I am 51.5 yrs old and still menstruating regularly.

do you have stressful situations in you day to day life at the moment?
Clearly stress is a hard to measure item. I can say I have been MORE stressed before I had MC symptoms, and gut-wise I was fine at the time as far as I could tell. But getting worse MC symptoms while being on a really restricted diet for a year...sure, that is stressful.

- have you noticed histamine type symptoms?
No. The only positive change I have noticed from diet change is that I am a little less nasally congested, something I have dealt with since I was in my early 20's. Maybe the dairy? who knows.

If there is a research student out there, I have a year's worth of food input and stool output data in an Excel spreadsheet that you are welcome to :-) . My IT husband even tried graphing with this data to see if there was a correlation between certain foods and symptoms, and got nothing useful.

All I know is that I implemented a hard-core, supposedly safe diet, free of the multitude of reactive foods Enterolab said I had (the only pre-lab food I could plainly experience as suspect was oatmeal). I controlled as many factors as I possibly could, and it still wasn't enough. I don't think I can do it any better. As a non-scientist, I can imagine making all these changes and then not improving my symptoms. But the big decline in health is harder to understand. How is that possible if I am eliminating so many supposed problem foods? Post hoc ergo propter hoc ain't no good, I know, but it sure looks like my changes made things worse.

Again, thanks for your help and information provided. I am not denying the useful results many have gotten from implementing diet changes from their Enterolab results. I am just saying that, alas, this has not been my experience, so I have to wonder if there is something else going on.

[tex]

Gabes' response is right on target. Nothing happens by chance — there is a reason to explain everything, and in this case, that reason can be found in your diet. Although you may feel that you've covered all the bases, there's bound to be an undiscovered issue or two, remaining. For some of us, the compliance bar is higher, than for others. That may not seem fair, but then, no one ever said that life was fair. We have to play the game with the cards we've been dealt, and if we play them well, we'll still win the game, regardless of the odds.

Allow me to bring up one other possibility for why symptoms may be worse after you start the diet. As the old Chiffon Margarine signature line went — "It's Not Nice To Fool Mother Nature". Similarly, it's not nice to try to fool our immune systems, either. Food metabolites such as gluten and casein are almost as addictive as opioids. Because of that, the more we try to "tease" our immune system, by only partially avoiding them, the more sensitive to them our immune system becomes, so the worse our reactions will be when we continue to eat small amounts, or trace amounts of gluten or casein.

The details of how and why this happens are in my book, but be aware that no research projects have ever studied this, so the medical community is unaware of it, and you won't find any information on it in the general medical literature.

Tex

[Gabes-Apg]

trying to help solve what might be causing the ongoing inflammation
Something or multiple things in your diet / environment is triggering high levels of inflammation

the coffee - are you putting any additives in it? (creamer, white sugar, etc) is it fresh ground or off the shelf in supermarket
the tea - have you doubled checked the ingredients?
I know this sounds weird but some tea products the bags are made from Soy if this is one of your triggers this may be contributing

Protein sources -
what meats are you eating? are you having protein every meal and snack?

nose spray
the spray you are using for your nose has dextrose. - did corn come up in your enterab report??

given your age you may need more magnesium than the 300mg daily recommendation - we need good levels of magnesium to use the Vitamin D3 properly. -

another aspect is gluten free processed foods (cereals / breads) if you are super reactive to gluten, then you may be reacting to the minuscule amounts that can be in some of these products.
an example. Gluten free in the USA is the item has less than 20 parts per million
gluten free here in Australia is the item has less then 5 parts per million.

not a major trigger but one to consider - is there any mold or other toxins at home or at work place?

or me, in my early stages of healing I reacted worse to Soy than gluten. I could not use any bathroom product with any Vit E soy in it.
this includes face and body moisturisers, make ups etc. I still to this day peel a fair amount off vegetables before cooking (as they are sprayed with vegetable oil to help them last longer etc )

the suggestions above are not generally major triggers, but I am wondering if you are getting contact with multiple small triggers and that has continued the inflammation cycle.

there are a small number of people that hard core lifestyle and eating changes are not enough. have you considering some of the medication options cholestryamine is a non steroid option.

[MomLady]

Hey Gabes,

Thanks for your detailed reply - sorry for the delay. Had my GI appt yesterday and it went reasonably well in terms of agreeing to do a long slow taper.

You are very detailed in thinking of what might be tripping me up, so I appreciate your attention to detail. Here are my answers:

coffee - I use plain stevia (organic from Trader Joe's). Usually bagged, preground Peet's or Starbucks. I had SoDelicious coconut milk for a while last summer when I began this, then later Silk unsweet plain almond milk. Couldn't tell any GI difference between them, and preferred the Silk almond, so I have stuck with that.

tea - I was hip to the soy problem, so I should be fine there. (I miss you, Bigelow Lemon Lift...soy lecithin, damn your eyes)

protein - lamb, turkey, pork, duck eggs. I tested a few times whether stopping pork or duck eggs made a difference, and couldn't see any. I have been aware of the possible soy issue with ground turkey. I use Shadybrook farm ground turkey. I am reasonably sure I was having enough protein.

nose spray
the spray you are using for your nose has dextrose. - did corn come up in your enterab report?? >>> AGH. Yes, it was +3

given your age you may need more magnesium than the 300mg daily recommendation - we need good levels of magnesium to use the Vitamin D3 properly. >>> OK, should be easy enough to take more, not sure how much.

another aspect is gluten free processed foods (cereals / breads) if you are super reactive to gluten, then you may be reacting to the minuscule amounts that can be in some of these products. >>> For a nearly a year, I didn't even try those. Last 2 months or so I have done so with bread (a TJ GF bagel or cinnamon bread), but it's not an everyday thing. Ditto some GF pancake mix - just in last month. In short, I was super pure, didn't have things with multiple ingredients, and it didn't seem to matter.

Mold or other toxins? >> not that i know of. We also have a whole house dehumidifer.

there are a small number of people that hard core lifestyle and eating changes are not enough. have you considering some of the medication options cholestryamine is a non steroid option. >>> Yes, in an earlier post on this thread I mentioned I tried cholestyramine twice, no luck.

Thanks for taking the time to think of all these possible triggers. It is mysterious...I am a very detail-oriented, diligent, and determined person, and I used those strengths in implementing these major diet changes, so the fact that I have not improved is pretty depressing. I am going to hope that budesonide will pull me out of the depths as I continue with "safe" (?) foods and maybe things will change.

- Janet

[tex]

If you use oral magnesium, be aware that certain types of magnesium supplements, or even too much of the right type, can cause diarrhea for some of us, especially while we're still recovering. We can only absorb so much magnesium at a time, and if we take too much at one time, most of it will remain in our intestines, where it can cause diarrhea. Divide it up evenly and take it with meals meals. Magnesium glycinate is the safest, most absorbable type available. Some types, such as magnesium oxide, and magnesium citrate, are laxatives.

Tex

[MomLady]

Thanks for that clarification. I take topical magnesium chloride in the Mo Maggies lotion. I tsp is supposed to be about 250-300 mg. I do this once daily. I don't measure exactly.

[Gabes-Apg]

you are welcome

based on your reply I am wondering if there are couple of little things that keeping you in the inflammation cycle
although it is good that you are seeing improvement with your skin

coffee - I use plain stevia (organic from Trader Joe's). Usually bagged, preground Peet's or Starbucks. I had SoDelicious coconut milk for a while last summer when I began this, then later Silk unsweet plain almond milk. Couldn't tell any GI difference between them, and preferred the Silk almond, so I have stuck with that.

some of the sodelicious can have soy in them - if you are only having 1 -2 coffees a day it shouldnt be a major issue


nose spray
the spray you are using for your nose has dextrose. - did corn come up in your enterab report?? >>> AGH. Yes, it was +3
mmmm maybe this is one of few small things keeping you in inflammation cycle



there are a small number of people that hard core lifestyle and eating changes are not enough. have you considering some of the medication options cholestryamine is a non steroid option. >>> Yes, in an earlier post on this thread I mentioned I tried cholestyramine twice, no luck.

Bugger (aussie slang for damn)

aside from possibility of small gluten contamination I am stumped!
fingers crossed the budenside gives you some stability!

[MomLady]

Bugger indeed :-) That is one I have heard before, and it's still funny to this Southerner! Thanks for your reply.