I messed up my digestion... Feeling ill and sad

[keepswimming]

I'm so fed up about this and really need to have a little rant

Just a background - I've had IBS for years, long before M.E. I actually had a bad flare due to stress just prior to getting EBV/that leading into M.E. But the last few years it hasn't really bothered me too much, other than loose stools and a bit of stomach ache.

So I decided to try an exclusion diet to check nothing was making my M.E. worse. I cut out legumes/grains/dairy/gluten for about 3 weeks then introduced them one at a time. I didn't feel any better during the diet, and I was fine with reintroducing all of them until I reintroduced gluten. I had bad headache, nausea, diarrhea, stomach pain etc. So I thought, OK, gluten seems to be problematic, and I cut it out.

But ever since then my IBS has been worse. I've been experiencing stuff like acid reflux (a new symptom for me) and nausea regularly. Increased stomach pain and symptoms. Eventually I thought, well this isn't helping so I might as well go back to eating gluten...

I reintroduced a small amount and didn't seem to notice any difference. So I thought I may as well eat what I like... But then two weeks ago I ended up eating a lot more wheat products than I had been... And I got so ill. I felt terrible, fluey and I could see from my heart rate I had massive inflammation in my body, as well as gastro symptoms.

Now I just don't know what to do with myself. I've obviously cut out gluten again. Low fodmap foods seem safest and minimise symptoms, but I am having problems whatever I eat. I'm wondering about the full low fodmap diet plan but on the other hand I'm afraid that as the exclusion diet seems to have triggered all this, whether another exclusion diet will make things even worse again?! If I lose my tolerance to even more foods...??

Or maybe I am just bad with gluten (or perhaps fructans as I am suspicious about onion too??) and the effects of reintroduction have caused a IBS flare which had made me more sensitive to everything else... But how long will it last?? It's weird how I've eaten gluten for years, but after cutting it out I'm getting such a bad reaction to it.

Honestly I'm just fed up. I tried to do something to make me better, and its made everything worse. I'm also anxious the effect all this will have on my M.E. In the long run...

 

[YippeeKi YOW !!]

(or perhaps fructans as I am suspicious about onion too??)

Onions are almost at the top of the no-no list with IBS. Also garlic. ALso pretty much anything you really enjoy eating, as far as I ca tell ....

It's weird how I've eaten gluten for years, but after cutting it out I'm getting such a bad reaction to it.

This is odd .... when my brain kicks in again, I'll be back ....

I tried to do something to make me better, and its made everything worse.

This is why I stick to the old dictum, "If it ain't broke, don't fix it ...." Which isn't to say that ME doesn't make us all feel pretty fluckin' broken, but at the time you undertook this experiment, you apparently didn't have any hard evidence that a change or restriction in your diet would help ....

I'm also anxious the effect all this will have on my M.E. In the long run...

My experience with undertakng ill-advised experiments (and yes, I've done a few) is that if you leave well-enough alone, your ME will reset to previous base. Whether this means gutting thru and adding small amounts of gluten back into your diet, or maintaining a hands-off position gluten-wise, only you can say.

But just know that you haven't screwed yourself unto eternity. You've put a hitch in your git-along that might take a minute to reverse.

Lemme know how it's going, yes?

PS .... I had what I thought was a relatively sudden up-flare of IBS before I found PR, and spent to a lot of time going to extremes to deal with it, all of them wrong. And I'm still here .... pretty much .... most of the time ....

 

[Treeman]

I also have ibs but don't have any answers. Hope it improves soon.

 

[Judee]

My best IBS sup is Mycopryl however, that might not work for everyone.

Plus, I can't do gluten either. No digestive issue with it though.

For a time, my Mom and I took a digestive enzyme that was made for gluten issues and it seemed to make it better. I wonder if that would help you now to be able to eat the other things more easily even if you don't add gluten back in.

THIS was the one we used but I see there are other brands like NOW. (The supplements are from different forms of Aspergillis which is a form of mold so I didn't take it that often because mold can affect my sinuses.)

Anyway, just a thought.

Hope you can figure this out and get back to your previous baseline.

 

[Treeman]

Hi, I had been trying Caryophyllene for only about a week and noticed that my ibs-c had improved, less sensitivity to the touch of my digestive system and the stools became softer ( and more smelly) . I have had to stop for a few days and the ibs-c has returned to its previous state.

I plan on restarting it.

This may or may not be of some use to you.

 

[Insomniac]

Raw camel milk and soups made of chicken/chicken bones, leek, pumpkin, squash/courgette helped me.
I boil those things just enough to make a soup. There is something anti inflammatory in it that helps me.
Also propolis capsules.

I also got worse after a severe elimination diet. It was a more extreme diet than what you went through.
When you eliminated gluten, did you make sure you got an alternate source of stuff like fiber to the replace the grains and their nutrients?
Or maybe you are sensitive to starches and not actual gluten?

I mention those two things because they are my mistakes.

I forgot to replace the fiber when I eliminated gluten. The only non grain, non starchy food I can find with a similar fiber content to grains are: pears, chia seeds, flaxseeds and psylium.

I have sensitivity to high starch things, like potato, oats, rice etc. This includes all the breads.

Hang in there. I wish I could say something better because it is really hard with this illness.

 

[YippeeKi YOW !!]

I don’t know if you’ve read any of @CSMLSM’s successful experiMents with caryophylline, but it’s really ben a miracle for him and its elped a few other mebers, too. @Treeman posted about it briefly above, in raltion to th improvement it created in his IBS.

Here are a few links. You may have already read @CSMLSM ‘s original post, I cant remember, but am posting these in case you haven’t, cause you never now what’s going to make the difference, or even totally turn the tide ….

A place to ask Questions about Caryophyllene + related stuff!
https://forums.phoenixrising.me/thr...ions-about-caryophyllene-related-stuff.87175/

And another, shorter one, but not as info dense in terms of introductorymaterial …

If anyone is considering taking caryophyllene, caryophyllene oxide and Humulene containing substances please check medications- CYP3A
https://forums.phoenixrising.me/thr...stances-please-check-medications-cyp3a.88245/

You might want to browse thru the first thread link I posted to get acquainted with @CSMLSM ‘ s information …..

EDIT ... for ridiculous typo that wiped out a tag. Not at my best. Not at all. Not even cruisin' thru that neighborhood ...

 

[Rufous McKinney]

Honestly I'm just fed up

Did this get any better? @keepswimming


maybe its gluten, or maybe its just the simple carbs go off so quickly, its not good for us. I seem to get away with a piece of bread now and then. But often don't get away with another piece. (make someting sort of sandwich like but only one piece of bread. I avoid pasta, generally...

I used farro once, instead of rice in a meal and that wasn't pretty (too much roughage, too much fiber)

I'm trying this new probiotic and liking it alot. Mood Probiotics. a thread around here someplace.

 

[keepswimming]

Hi everyone, I'm so sorry it's taken so long to reply! I really appreciated all your replies - everything just got on top of me so I went AWOL for a while, and then I had a sickness bug which knocked me back! But I'm feeling a bit more like myself again now. Thank you so much all of you for your responses.

So an update... I feel like I'm starting to figure things out now. I've been doing research and some self experimentation. I am definitely sensitive to gluten. I have also realised I am sensitive to corn/maize, which explains why some gluten free products were bothering me. Apparently corn can be a cross reactive food if you're sensitive to gluten, it has a protein called zein which can mimic gluten in some people. I've particularly realised I have a very specific set of symptoms when I eat these products, and the effects last for weeks, which is different to other foods which are IBS triggers. I feel like the gluten/corn creates more of a whole body reaction, whereas other foods may just upset my gut for a day or two.

After research and chatting with people with gluten sensitivity it also seems its quite common for gluten sensitivity to get worse after you've cut it out. My guess is I've probably had problems for a long time, but after a break my body is reacting much worse.

I'm currently still eating a low fodmap diet, my stomach has settled down enough that I'm now at the stage of reintroduction. I've tried lactose and that was fine, fructose next! My hope is that gluten and corn are the main culprits, but the next couple of months of trialing different fodmap groups should figure that out...

I just hope this is all going to be worth it in the long run. One thing I have noticed is since cutting out the gluten and corn my resting heart rate has dropped. That's got to be a good sign...

 

[keepswimming]

My experience with undertakng ill-advised experiments (and yes, I've done a few) is that if you leave well-enough alone, your ME will reset to previous base. Whether this means gutting thru and adding small amounts of gluten back into your diet, or maintaining a hands-off position gluten-wise, only you can say.

My experience with undertakng ill-advised experiments (and yes, I've done a few) is that if you leave well-enough alone, your ME will reset to previous base. Whether this means gutting thru and adding small amounts of gluten back into your diet, or maintaining a hands-off position gluten-wise, only you can say.

But just know that you haven't screwed yourself unto eternity. You've put a hitch in your git-along that might take a minute to reverse.

Thanks so much @YippeeKi YOW !! I'm sorry it's taken so long to reply but this was what I needed to hear! It's easy to go into panic mode sometimes, none of us want to get worse do we.

I don’t know if you’ve read any of @CSMLSM’s successful experiMents with caryophylline, but it’s really ben a miracle for him and its elped a few other mebers, too. @Treeman posted about it briefly above, in raltion to th improvement it created in his IBS.

Thanks for this. I plan to follow through with the low fodmap diet, then look into some things which might help with gut healing. So I will put this on the list - thanks @Treeman for the original suggestion too.

For a time, my Mom and I took a digestive enzyme that was made for gluten issues and it seemed to make it better. I wonder if that would help you now to be able to eat the other things more easily even if you don't add gluten back in.

Thanks @Judee ,this is on the list too!

Raw camel milk and soups made of chicken/chicken bones, leek, pumpkin, squash/courgette helped me.
I boil those things just enough to make a soup. There is something anti inflammatory in it that helps me.
Also propolis capsules.

Unfortunately the one time I tried bone broth it made me really sick! Not sure if it's a histamine issue or what... I will look into the capsules, thank you for the suggestion.

I also got worse after a severe elimination diet. It was a more extreme diet than what you went through.
When you eliminated gluten, did you make sure you got an alternate source of stuff like fiber to the replace the grains and their nutrients?
Or maybe you are sensitive to starches and not actual gluten?

I'm so sorry, it's horrible when things you're trying to help you heal make you worse. I'm pretty sure now that it's gluten. I can eat gluten free oats, buckwheat, rice, potatoes with no issue.

Did this get any better? @keepswimming


maybe its gluten, or maybe its just the simple carbs go off so quickly, its not good for us. I seem to get away with a piece of bread now and then. But often don't get away with another piece. (make someting sort of sandwich like but only one piece of bread. I avoid pasta, generally...

Thank you so much for asking @Rufous McKinney , I've posted an update above. As I said above, I'm pretty sure with me it's gluten, although simple carbs can be problematic too can't they.

I'm trying this new probiotic and liking it alot. Mood Probiotics. a thread around here someplace.

Thank you, I want to try a probiotic again when I've finished the low fodmap diet. I drank kefir for a while so I might try that again, but I will look into the one you suggested too. When I tried kefir before I had bad die off symptoms to start with, they settled down after a while. Perhaps if gluten has been problematic by cutting it out I can get the full benefit of a probotic this time.

 

[Rufous McKinney]

I feel like the gluten/corn creates more of a whole body reaction, whereas other foods may just upset my gut for a day or two.

Do you buy organic or non GMO?

its possible we might be reacting to glyphosate or other chemicals that are often used on wheat and corn.

I mostly get organic and try to avoid GMO corn....

 

[keepswimming]

Do you buy organic or non GMO?

its possible we might be reacting to glyphosate or other chemicals that are often used on wheat and corn.

I mostly get organic and try to avoid GMO corn....

Neither, so that's definitely something I could explore.

 

[godlovesatrier]

Most interventions will make you feel worse before you feel better and you'll have to deduce the new baseline and decide if it's any good or not.

Options

1. Don't do anything. Sometimes it's better not to if your baseline before was ok.
2. Take one tablespoon oat bran in the morning. This way you'll get about 1000mg beta glucans which will cause immune modulation. You'll feel rubbish for about 2 weeks but then you should start to pickup and feel improvement. Why is this good? It activated macrophages which eat pathogenic bacteria. As most ME have bad bacteria in the gut I believe this has an antimicrobial effect.
3. You could try solaray 24 strain or vitomixx. Both of which will re-populare bifido bacterium and lactobacillus. Both of which are chronically low to non existent in ME. However most patients just feel rough on these or see an improvement in energy (if you're like me).

Always hard figuring out what to do.

Hip also has a thread on bacillus subtillis. A form of bacteria that kill off staphylococcus aurelius in the gut. Staph a causes IBS it's posited. But we've been having some unpleasant reactions to bacillus. I had very bad immune modulation, mild but annoying brainfog, wrist pain, stabbing pain in various places, very poor sleep and obvious signs of immune stimulation .

Best thing to do is prob wait for it to rebalance. Gut bacteria rebalance takes ages. But eat plenty of fibre and it should help repopulate from existing species

 

[keepswimming]

@godlovesatrier thanks so much for these suggestions. I definitely want to work on gut healing once I've finished with the low fosmap reintroductions so I can look into these.

 

[godlovesatrier]

Be worth getting a 16s from thrive or biomesight for specific suggestions tailored to your microbiome dysfunction.

But it seems like only some pathogenic bacteria appear on a stool sample not a 16s which is annoying.