Budesonide, Enterolabs & IgA

[Lui]

Hi, friends-
I swear, the longer this D goes on, the more brain cells I'm losing (and we all know where the exit points are)!

I started Budesonide February 11, 2020. I'm still taking 9mg/day and still having WD or D or occasional semi Normans every day. Since January 3, 2020...
Still ONLY eating white rice, white & sweet potato, avocado, banana, pork and Earth Balance soy-free "butter". I drink all-organic Traditional Medicinals Green tea, with dandelion, Tulsi Sleepy Time tea and water. omg...I just realized that I'd never analyzed the SleepyTime tea ingredients-I've been drinking it for years!
Tea: tulsi (holy basil) peppermint, cardamom, ashwaganda, chamomile, gotu kola and shankpushpi.

Can Tex or someone please explain to me how the Enterolab test results might be skewed if I were to do the test now? And, I mean...in detail, please.
If IgA is suppressed, does that mean just the gluten antibodies results will be skewed? Or, some or all of the results? That's really what I'm not understanding.

Thank you all so much for your time and knowledge!! Where would I be without y'all? (Well, besides stuck in the bathroom )

Lui

[tex]

Hi Lui,

At this point you've been taking the budesonide for over 5 months. Obviously, it's not working very well. Since I don't see anything wrong with your diet, if I were in that situation, I would eliminate both teas for at least a few days, to see what happens. You should know within a few days (or less) if the tea is the problem.

Regarding the possible suppression of your immune system's ability to produce IgA antibodies (because of the budesonide), you're in a transition period now. We know that someone who's been taking budesonide for a few months (or less) would probably still respond normally to most of the EnteroLab tests. We also know that someone taking budesonide for a year or longer would probably get very little benefit from most of the EnteroLab tests, due to false negative results. IOW, the tests would not detect the food sensitivities because that person's IgA production capabilities would be too low for most foods. It's possible that anti-gliadin antibodies might still be detected at that point, but the others would all surely be too low. The area in between is a gray area.

We know that we all have different response rates to budesonide, so response rates between a few months and a year (of budesonide) are uncharted waters because of individual characteristics. The tests will miss reactions to some foods for some people, but not for others (depending on antibody levels).

That said, I believe we can still get some insight into the situation by simple logic. Here are my thoughts (and please note that this is strictly my opinion — not EnteroLab's):

If the budesonide is not working, then obviously you are still producing antibodies or some other pro-inflammatory agents. Since most pro-inflammatory agents are produced in response to antibodies, I'm guessing that the EnteroLab tests may still show a response to the antibodies that are not being suppressed by the budesonide at this point. IOW, although the Enterolab tests may no longer be effective for all foods, they might still be helpful for the ones that are currently causing most of the inflammation. Personally, if I were desperate to see what was going on, I would gamble on the EnteroLab tests.

Again, that's just my opinion.

Tex

[Lui]

Tex-
My apologies for not replying. Thank you for explaining IgA results so thoroughly. To be honest, I went into a kind of funk after reading your reply. NOT your fault. Your words just confirmed my suspicions that
1) the budesonide was not as effective as I expected.
2) the Enterolab test was possible at this point, but there would not be an all-encompassing result, only a partial view into my "internal world".

I did take some action: stopped drinking SleepyTime tea at night, and there hasn't been enough of a difference to warrant thinking that it was a contributing cause to my D.

I took your thoughts re: testing to heart. I just can't see spending the money for a partial result (money is pretty tight right now!). I know me, and I'd always wonder what I was missing!

I'm very open to input, but here's what I'm considering: tapering off the budesonide (I already know how bad it can get), then with the guidance of y'all and Dr. Fine (if appropriate), after a period of time, do the testing so I would have a full report. I would know more definitively what I can and can't eat.

Have any of you tried this? Thoughts? Experience? Please chime in! I'm open.

Love,
Lui

[Lui]

Should I post this "experiment" I'm considering in another area instead of Enterolab Testing?
Lui

[tex]

Here should be fine.

Tex

[brandy]

Hi Lui,

Two comments--stick to a one ingredient tea

You might temporarily switch to coconut oil in lieu of the earth balance while you are struggling--the "refined" is neutral in flavor and does not taste like coconut.

[brandy]

Lui,

Are you on any prescription drugs? Some of them will prevent remission.

Are you still having WD? Ribbon stool? How many times per day?

[Lui]

Lui,

Are you on any prescription drugs? Some of them will prevent remission.

I tapered off both Prevacid and Prozac. I didn't realize that I'd taken both for over 10 years! Prevacid is the one I miss! Heartburn!
Stopped NSAIDS, aspirin, many supplements, any thing that I read on here that may contribute to this. I can imagine what this all has done to contribute to my gut health!

I now take Thorne Vitamin D/K2, Pure Encapsulations B12 (both liquid), Jigsaw SRT Magnesium and CBD tincture for sleep/pain. Prescriptions:
Wellbutrin (anti-depressant), Lorazepam (sleep), Pepcid (heartburn), Amitriptyline (sleep), Modafinil (ADHD/alertness), Gabapentin (nerve pain) and Budensonide 9 mg/day since February.
Except for the Budesonide, I've taken all of these for years. It looks like a lot, but it's allowed me to stabilize fibro/autoimmune arthritis, etc. I'd actually like to get off some more of them eventually. At this point, I think it's all the same disease...It just finally "exploded" as CC.

Are you still having WD? Ribbon stool? How many times per day?

It really varies, which really makes this so hard to know what to do. I have bad days and good days. I have WD at least once a day. It's always "wet". At times during the day, I may not have any stool, just urine, but there's always some to wipe. Haha-I have wet wipes!
Occasional (once a week?) watery ribbon stools. Not waking up for D at night anymore.

I stopped the sleepytime tea, only have peppermint and green tea with dandelion. I'm going to find green tea without additional ingredients. Still need the caffeine!

Here's my daily diet:
Breakfast: sweet potato w/ earth balance* and sometimes bacon
Lunch: either rice or potato w/ earth balance*, pork and avocado
Dinner: same as lunch, but if I had rice for lunch, I have potato for dinner
Snacks: banana, sweet potato chips, potato chips
We cook everything in homemade pork bone broth. Pork is pressure-cooked, then meat is cooked in coconut oil for meals. I add Himalayan salt.
*I will back off on the Earth balance and use coconut oil instead to see if it helps.


All foods have been sourced for organic without additives. We are blessed to live in an area that has so much local meat/veggies/organic/non-GMO, etc.

So, I've been on the above diet for months now. High-fat, High-carb, some protein. Pre-CC, I did well eating high protein and complex carbs.
I really didn't mind the repetitiveness, but I've finally hit a wall, eating the same things over and over. I don't change anything, I just keep taking things away. On my good days, I get out and do some gardening. On my bad days, like yesterday, I just sit in my chair. I cry easily. I get light-headed when I stand up. No energy. Headaches. I'm sure you'll all experienced this, and much worse. I also know that many of you have improved. The success stories are heartening.

That's why I've started thinking "f" this, I'll taper off the Budesonide and then do Enterolabs.

Love,
Lui

[tex]

Some of the side effects of Mondafinil are:

A Stuffy And Runny Nose.
Anxious Feelings.
Backache.
Diarrhea.
Difficulty Sleeping.
Dizziness.
Headache.
Indigestion

How much amitriptyline are you taking? Amitriptyline can have a big effect on motility.

Tex

[Lui]

Hi, Tex-

The amitriptilyne is a very low dose, given for sleep cycle assistance. I've never experienced motility issues with it, nor with the Modafinil.

Best,
Lui

[brandy]

Hi Lui,

We are not anti drug on here or anti prescription drug but I'd take a hard look at your prescription drugs.

Prescriptions:
Wellbutrin (anti-depressant), Lorazepam (sleep), Pepcid (heartburn), Amitriptyline (sleep), Modafinil (ADHD/alertness), Gabapentin (nerve pain) and Budensonide 9 mg/day since February.
Except for the Budesonide, I've taken all of these for years. It looks like a lot, but it's allowed me to stabilize fibro/autoimmune arthritis, etc. I'd actually like to get off some more of them eventually. At this point, I think it's all the same disease...It just finally "exploded" as CC.

You are taking a lot of prescription drugs. It sounds like you are feeling miserable now too. I'd probably talk to your pharmacist and see which one he thinks is linked to IBDs/gastro issues and consider a taper off of the next one.

I've had active MC twice. The first time I used budesonide and got into remission (was on no scrips and no supplements).
The problem was I had severe side effects on the budesonide and could not go on it again even though it worked great the first time. Second time I went into remission with diet alone. I struggled for 9 months until I eliminated my OTC supplements for
a couple of weeks. Once I eliminated my OTC supplements I was headed into remission within days.

Most people find fibro gradually goes away once they get into a long term MC remission. It does take awhile.

I had a lot of wacky symptoms when I first got MC. I was only on budesonide for about 4.5 months but full recovery took
about 2 years. I had brain fog for over a year. I had tingling in my arms for weeks. I could not do math equations.
I had a lot of brain issues from MC. Fatigue was mind numbing for probably 18 months. I guess what I'm trying to say
was my MC remission was a long journey.

With all my health issues I prioritize getting and staying into MC remission. i.e. Keeping my IBD in remission trumps
everything else I have going on healthwise. IF I'm not in MC remission everything else suffers if that makes sense.

If you decide to taper off of one or two of the scrips I'd probably hang onto the budesonide for another 6 or 8 weeks or so concurrently while getting off scrips. Understand budesonide works less well if you go on it a second time.

I have some comments on sleep but give me a day or so on that.

[Lui]

Hi Lui,

We are not anti drug on here or anti prescription drug but I'd take a hard look at your prescription drugs.

Thank you, Brandy and Tex. Brandy, it sounds like you went through hell to get where you are now.

I just wanted to cry when I thought of what I'd need to do to sort it all out and what to do first/which med to stop, etc. As an "old" nurse, I guess I've gotten cynical over the years about doctors and pharmacists. I don't have a lot of faith in a pharmacist to sort out CC and med interactions. I've had a "self-management" approach to my meds. So, I pulled up my big girl panties and started researching each drug to determine which might be causing problems. (I'm sure stress has something to do with it In addition to our world's current issues, my oldest daughter (33) has separated from her husband, and is staying here. It's all very sad).
Am I overthinking this? Yes, which is what took me so long to finish this reply. Also, I tried salmon the other night, and it really knocked me for a loop. WD just now subsiding. Thank god y'all are here! We can talk about all our stuff in detail without fear of TMI. So, for days I've just been reading more of the forums.

I'd been considering several different paths. I'm going to list some of them and see what you guys think. #1, we've discussed.

1) Taper off Budesonide, then have Enterolabs done. Is it anecdotal re: 2nd time around with Budesonide not as effective?

2) Continue Budesonide, add Prednisone (MD suggested awhile back and I didn't want to take it yet. I've taken it several times before over the years.)

3) Continue Budesonide, add cholestyramine (MD had originally suggested it before diagnosis, then said it wasn't needed when biopsy showed CC). I don’t have a gallbladder.

4) Or, 2 or 3 without Budesonide

-I think I need to increase my magnesium levels. Everything I've read here, especially in the last few days, really points to the importance of this. I'm taking Jigsaw Mag SRT, which has:
Vitamin B6 (as Pyridoxal 5-Phosphate Monohydrate) 5 mg
Folate (as Quatrafolic 5-Methyl Tetrahydrofolic Acid Glucosamine Salt) 200 mcg
Vitamin B12 (as Methylcobalamin) 6 mcg
Magnesium (as Dimagnesium Malate) 500 mg
Malic Acid (as Dimagnesium Malate) 1436 mg
I've continued with it despite the recommendation here for Dr's Best, as it had the folate and B vits, too. I do have a bottle of Dr's Best.

-Perhaps 1st stop the lorazepam, which will temporarily cause some wakefulness.

-Then get started on tapering the Modafinil, which is really going to have an impact. It's funny (not really, but we gotta laugh sometimes), my MD was going to start me on Adderall just last week. Another reason why I've been resisting. I have a difficult time focusing as it is, so really felt it could be effective.

OK, enough for now. Thank you all SO much for the guidance, advice, and extreme hand-holding you folks do here.

Best,
Lui

[tex]

1) Taper off Budesonide, then have Enterolabs done. Is it anecdotal re: 2nd time around with Budesonide not as effective?

That's not only our epidemiological experience, but the fact that each successive treatment restart is less effective is verified by published research.

2) Continue Budesonide, add Prednisone (MD suggested awhile back and I didn't want to take it yet. I've taken it several times before over the years.)

Sometimes that helps, but it would almost surely guarantee some degree of adrenal damage, if done for an extended period.

3) Continue Budesonide, add cholestyramine (MD had originally suggested it before diagnosis, then said it wasn't needed when biopsy showed CC). I don’t have a gallbladder.

Without a gallbladder, you probably need to be taking cholestyramine even if you didn't have CC.

That Jigsaw Mag SRT supplement should be safe. I can't be sure of that because I'm not aware of anyone else here who has ever taken it, but it appears to be safe. If you ever decide to try something else, look at Thorne Laboratories' Methyl Guard, or methyl Guard Plus (in addition to the Doctors Best Magnesium Glycinate). How about vitamin D? I'll assume you're keeping your 25(OH)D level up.

MC is most effectively treated by putting less into our mouth, rather than more. When we're reacting and we can't stop, our immune system tends to become more sensitive over time, so that it tends to react to additional ingredients. If we're ingesting all sorts of things, the sheer numerical volume of the variety of ingredients will virtually guarantee that we'll be unable to reach remission.

So I'm hoping that when you can taper off the lorazepam and Modafinil, and assuming you continue to maintain a safe, simple diet, you'll finally be able to enjoy the symptom-free life you're working so hard to attain.

Best of luck to you. Getting this disease under control is never easy, and now there's extra stress to overcome, but you can do it, because it's so important to your long-term health.

Tex