Some new questions

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Hi Everyone,
I've been off recovering for several months and doing better all the time - then the wheels came off the cart and now I'm back with more questions - which I know you'll be able to help me with.
At the beginning of December my dad died of Covid. I thought I was handling it okay, but maybe stress got me. Also about the same time I tried a different oil while making my own bread - which I had been doing with good success for a few months. The oil was listed as 100% Sunflower Seed oil. I'm figuring that may be a lie. Soy kills me so maybe it was adulterated with soy? Who knows. The problem was the D is back and I can't get rid of it. I'm back to eating my same safe foods verified from my Enterolab test. No baked things, no foods with more than a couple ingredients. No fiber etc. The same foods which got me out of the D to start with.
I had a box of Budesonide in the cupboard- and am thinking of trying it again.
But here are my questions.
1. If you're taking Budesonide, does the 'pulse test' still work to test questionable foods when you place them in your mouth?

2. If you are taking Budesonide and have BAM - will the Budesonide still work completely- because it only addresses inflammation not the bile acids which still may be present.??

3. What is the likelihood of developing more food sensitivities after you've taken the Enterolab tests and you're on your way to recovery? How long do they take to develop? A day? A year? 10 years?

4. I saw a drug advertised called Rhinocort. It's an inhaled form of budesonide that's available OTC. What's different here? Encapsulated form? Just curious since its OTC and the Budesonide we are prescribed is hideously expensive and requires a script.

Thanks to all of you for sharing your knowledge,

Colleen

[HockeyMom]

Do you use..or have you used cholestyramine for BAM already ? My thoughts and experience with Budesonide twice over the years and cholestyramine....those of us with wicked bile acid issues see little to no improvement while taking Budesonide. For me, I might as well have been taking M & Ms

If you have used cholestyramine with some success (however you define that) in the past...my experience is that maybe you need to increase the dosage. I seriously fiddled around with dosage and dietary restrictions for a good THREE YEARS before I became brave enough to up my dosage to 8 packets a day . No one takes 8 packets a day, right? That’s an insane amount, right? I lived on a tightrope that last year at 6 packets...sorta ok but thinking any little food thing was still messing with me, and driving myself crazy trying to figure it out. 8 packets solved that problem.

My 2 cents..

Laine

PS...Budesonide seems to be a very common steroid in inhaler form for folks with chronic lung issues ...see lots of my hospital patients with COPD and such have it listed on their med sheets.

[Rosie]

The reason for Entocort is that the budesonide is encapsulated in order to target it the intestine where it needs to work. Very little gets into the bloodstream and the rest of the body, and minimizes the nasty side effects of taking regular steroids. The inhaler targets mainly the lungs, so not much use for digestive symptoms. The steroid in Entocort, budesonide, is also available in cheaper tablet form, but then there are the usual problems with side effects.

If your drug plan has a huge co-pay for Entocort, just use GoodRx. Depending on the pharmacy, I have seen it as low as $71 for a 90 pill supply.

Another alternative is alldaychemist, an on-line pharmacy that doesn't require a prescription, even though they say they do on their website. That is just a "fig leaf" to cover themselves. The cost is fairly similar to GoodRx, once you factor in the cost of shipping. Also, with Covid delays, shipping can take 3 or 4 weeks. So unless you are having trouble getting a prescription from your doctor, GoodRx is your best bet.

Rosie

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Thank you for your replies!
Yes I took and am taking cholestyramine, and it seemed to work until this last catastrophe!
8 packets a day !! I'm stunned! You are brave to try so much but it gives me some hope here. I'm going to up my dose to try to right this ship!! At this point I feel I have nothing to lose. I'm only having 1 trip a day to the bathroom but it's always D. Cholestyramine is what brought me out of that. But I was only using 1 packet / day.
How long have you been taking it? Does the BAM problem EVER go away????

Thanks for your help!
Colleen

[tex]

Colleen,

Laine and Rosie did a great job of answering your main questions, so I'll take a stab at a couple of the others.

If the "heart rate" test usually works for you, My guess is that it should continue to work if the budesonide is not controlling your symptoms. After you take budesonide for 6 to 8 months or more, the "heart rate" test may not work as well. But there's no research data on this, so my guess could be wrong.

Additional food sensitivities can probably develop at any time. In my case, I initially tested negative to soy sensitivity at EnteroLab. Several years later, I had a reaction to peanuts, and an EnteroLab test showed that I was sensitive to soy.

Incidentally, the stress caused by a death in the family can have a very powerful effect on our remission status. It can be strong enough to trump even the best of treatment efforts, and until that stress has faded sufficiently, it may be continuing to frustrate your treatment efforts.

Tex

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Thank you Tex,
I wondered about the timing of my dad's death and if it could be affecting me more than I had thought.
I was hoping I could just snap out of it, but alas that's not the case.

Something interesting happened to me regarding peanuts- this happened years and years ago before any of this MC business started.
I was eating peanuts/peanutbutter everyday back then. I started to notice I was having pain in my right hip joint. I remember wondering what it could be from since I considered myself too young to need hip replacement surgery! We had stairs at my work and it was becoming painful and difficult to climb them. I started researching and read someplace that peanuts can be a trigger for arthritis. So I cut peanuts out of my diet and within 3 weeks the pain in my hip was completely gone. I found that to be weird then - now i completely understand what the whole situation was about.

In the case of the sunflower seed oil - are other oils, even ones labeled 100% also adulterated with soy like olive oil is??
Can I not trust what i read? Last year you told me to be wary of any olive oil NOT on the approved list. I found that was one of my problems. I stopped consuming it and my recovery really started to improve. Once again you saved me.

Am I to understand that if a person is on budesonide and their diet is completely free of offending foods, the drug will then cause them to be constipated?
Questions seem to breed in my brain. Sorry.

I'm going to give myself a break and some time to process all that has occured. It's hard for me to know if my problems are internal or external right now.
Thank you all for your insight!

Colleen

[tex]

As far as I know, that olive oil list is still reliable.

https://www.aboutoliveoil.org/certified-olive-oil-list

There may be similar lists for other oils, but I've never checked.

Am I to understand that if a person is on budesonide and their diet is completely free of offending foods, the drug will then cause them to be constipated?

That seems to be the case. Our general recommendation for reducing the dose during a treatment regimen is to step down to the next stage at the first signs of constipation.

I'm going to give myself a break and some time to process all that has occured. It's hard for me to know if my problems are internal or external right now.

I agree with that plan. Sometimes we push ourselves so hard when trying to recover that this just adds to the stress, and it becomes counterproductive. Stick with the diet, and your treatment plan (whatever it may be), try to relax, and go with the flow. Time helps the healing process — especially when emotional stress is involved.

Tex

[HockeyMom]

Well, I’ve been taking cholestyramine since September of 2016. GF, DF, SF starting in like November 2011. Diet went down to crazy restricted in 2016. Budesonide in 2011 and 2017....not the miracle drug for me! Still took Imodium and pepto with it...still had diarrhea. Enterolab testing twice.

Fiddled with dosage of cholestyramine and actually stopped taking it twice. Immediately decided that was a really bad decision. Missed 2.5 months of work in 2017, lost 25# and bottomed out at 100#. Million dollar work up revealed nothing. I had no other options. I truly thought this might kill me. Honestly ....

We are all different. Diarrhea issues run in my moms Swedish side. Polly posted about some genetic mutation regarding bile acid reabsorption. I guarantee you my Swedes have it, and if I remember...it’s been mentioned that the Scandinavian countries have more MC issues? Anyone?

Bless the folks that can have a life with dietary restrictions or LDN or steroids. I so wanted that to be me! Alas, it was not. And you can either keep waiting for things to settle down and improve...or try going a different direction. I HAD TO GO A DIFFERENT DIRECTiON. I just inched my way up with cholestyramine over the years. It does not work overnight!!! It just started settling my churning guts down! Then poop got better. But it took me diving into the deep end to get solid! And no...I don’t think this just gets better ...I tried going down to 6 packets a day this past summer....didn’t go well. Took me a month at 8 to get good again.

I preach this gospel as a success story. I truly believe bile acid malabsorption is more common than people think. And if nothing else is working....what do you have to lose? Cholestyramine is just some sort of industrial resin...you don’t get high, you don’t get the munchies and your hair won’t fall out . I do take fat soluble vitamins though..

After eating a restricted diet for all those years....I was so gun shy about adding food back in! I have no dietary restrictions now. 4 years ago I wouldn’t have believed that would ever be possible again.

All I’m saying is one size does not fit all!

Laine

[tex]

it’s been mentioned that the Scandinavian countries have more MC issues? Anyone?

I believe you're quite correct. They have to deal with a lot of celiac issues, also. Of course, both those problems are tied together.

I truly believe bile acid malabsorption is more common than people think.

Published research shows that at least 40 % of diarrhea cases that don't respond to treatment are caused by BAM.

And if nothing else is working....what do you have to lose?

I sure wouldn't argue against that.

Excellent post.

Tex

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Thank you Laine and Tex,
I'm still in a state of shock that 8 cholestyramine/ day is the magic formula for you! But I'm thrilled you found an answer for the misery! And no diet restrictions!! Now I'm awestruck!!
For the last 2.5 years I've been in this battle but as i see - comparatively- that's not very long. But in that time I've lost over 30 lbs. Sadly, I didnt have it to lose. At one point I was under 100 lbs. Looked like I just stepped out of Auschwitz.
My attitude has been - this thing isn't going to get me! - however some days I lose my resolve.
Cholestyramine was the answer over 6 months ago when I added it to the GF, DF, SF diet. Poops went from D which was only 1x / day to solid bullets. Still only 1x /day. Since my dad's passing, the D has returned and not left me - 5x/ day or more. In the last week it has decreased to 2x / day or so. I blamed the sunflower seed oil I tried, but that may or may not be true.
I know what you mean about being gunshy about adding foods to your diet. After working SO hard to become stable, the thought of returning to instability makes your blood run cold.
Laine can you really eat anything you want??? Gluten? Dairy? How can that be?? You're my hero.

Tex I'm going to do more digging on soy being added to other oils. I'll let you know if I find anything. I have no Scandinavian blood lines but that's not to say that's not my problem.
When I calm my nerves/emotions down, I'll investigate further medication..
Thanks again,
Colleen

[HockeyMom]

Colleen-
I get it. I wasn’t great and then things went nuts when my 52 year old husband died in March 2016. So, stress and more stress and more stress. Lots of people being crazy, secrets coming to light. My life turned into a bad Lifetime movie.... I also looked like I escaped from a concentration camp. So, ya....stress makes things worse. But My gut wasn’t great BEFORE the stress ratcheted up.

This Potty People group saved me. I took information and advice and experimented until something worked. I heard about cholestyramine here, Betaine HCl here, magnesium deficiency here. Ya, I tried it all...and then some! Again, one size does not fit all.

Believe me, when you read all these posts about people getting constipated on “ half a packet of cholestyramine a day”....you feel like some freak because it takes 8 packets a day....every day...isn’t that enough for a 400# man? Andre the Giant? I weigh 125# now for goodness sake.

Wow..adding food back was a slow process because I just didn’t trust it. I guess I finally just Let The Good Times Roll in mid September of 2019 visiting New Orleans with a bunch of friends. I ate everything and was fine...it was so liberating and full blown crazy. I have no dietary restrictions. I honestly don’t feel like I react to anything now.

I still take ONE Betaine HCl capsule with meals and do magnesium lotion plus Remag in my tea. I’ve tried cutting mag out but get low level anxious and my sleep gets bad. I sleep SO well now. Sleep of the dead, literally... the only other stuff is the fat soluble vitamins because I take the cholestyramine . I’m only doing the Remag to use up the bottle. After it’s gone I will probably try out mag glycinate pills again. Just being able to do mag pills would be so much cheaper

Potty People Rock .Like the motto says...You Can Get Your Life Back. It just may not be the same route to get there !

Laine

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Hi All,
I want to run this past you so I can get some much needed feedback.
I had just continued to not improve - so I went back to my base foods : Jasmine rice, gr. beef, weak tea. Basically I eliminated corn completely. Within 12 hours my trips to the bathroom were decreased and in 24 hours it was back to 1 trip a day. The D is not gone but it is not the WD I had. I have taken this to mean I am reacting to corn. On my Enterolab tests I did not react to corn at all. And, indeed, I had been consuming corn for the last 8-9 months or more seemingly with any problems.
So what's up with this?????
I'm beyond disgusted considering trying to eat corn-free is hideous. I take a thyroid pill every morning. I'm assuming it has corn in it. Tylenol has corn! Does Cholestyramine?? I read conflicting reports on that. Label says sucrose, but does not list the source of sucrose.
I did read the new Tylenol liqui-gels do not have corn.
Does Budesonide have corn in the capsule?? I dont take it - just wondering.
Can I take my regular thyroid pill or am I shooting myself in the foot??
Boy this is a pain!
I'm back to being afraid to eat anything. Back to losing weight I dont need to lose.

Thanks for any ideas!

Colleen

[tex]

Hi Colleen,

Here are my thoughts. The primary prolamin protein in corn is zein. From 44 to 79 % of the total protein in the various corn varieties is zein. So this surely is the protein in corn that EnteroLab tests for reactions to. The ELISA tests used by the lab are very specific, and somewhat expensive, so in order to prevent the cost of the test from becoming too expensive for many patients to be able to afford, the lab only tests for the single protein in each food that's known to be the most common problem for most people. For corn that would be zein. Most likely you are reacting to some protein other than zein in corn.

I hear you about the difficulty in avoiding corn, because I had to avoid corn while I was recovering. The good news is that after I recovered and healed for a while, I was once again able to eat corn without any problems. As to whether any drugs or supplements contain corn, that depends on the manufacturer of the specific product. Sometimes they print the source of inactive ingredients on the label, but that's not required by law for corn. And because of the pandemic, the FDA has told manufacturers that they can make minor changes in ingredients, without changing the label. That option doesn't exist for the 8 major allergens, but it would for corn. That makes life even more difficult for people who are sensitive to corn.

That said, whether or not corn in a medication or supplement will be a problem may depend on how much is used. For tiny pills that contain only a few percent of corn, it may not cause a problem. But for a big pill that's 50 % corn, for example, it would almost surely be a problem. At least that's my opinion, FWIW. The thyroid tablet that I take (Armour) is very small. I've never been concerned about the corn in it, even when I was recovering. But then, I don't know if it contains corn or not.

Tex

[HockeyMom]

I don’t know about corn. Of course I reacted to it on Enterolab at a 2+....so I avoided it for a good solid year or two. I remember worrying about soy more than corn being in like Imodium and Tylenol. Not sure if it’s in Sandoz cholestyramine .
But if eliminating that makes you significantly better....

Like Tex said...maybe down the road you can try it again! I do corn chips and tortillas now. I don’t do corn on the cob or lots of whole corn because it basically comes out looking just like when it went in .

Laine

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Thank you Tex and Laine
I am suspecting the corn is a new problem. I was eating corn a lot before this hit. But who knows. I had even eaten corn on the cob - a small serving - with no ill effects.
I'm grateful for your thoughts on whether the amount could or could not be significant. I had a sense that everyone has a tipping point concerning each substance. The thyroid pill does indeed have corn, according to my research, but the amount has to be tiny considering the size of the dose. I plan to keep taking it and see what happens. I have eliminated all other sources of corn in my diet and am doing better in only a short time. Obviously, it was/is the problem.
I'm also glad to know that once I get healing, I will be able to tolerate corn again. It's amazing how prevalent it is in the food supply.
Laine, I noticed your screen name is Hockeymom. Hockey is near and dear to my heart since both my nieces are hoping to go to college on hockey scholarships! We have a rink next door every winter for them to play and practice.

Thank you again for your thoughts. I seriously dont know what I'd do without you!!

Colleen