Newbie's sob story and questions

[DB]

Hi Everyone, I was just diagnosed with MC (I'm not even sure which kind yet) this past week and am extremely grateful to find this group and amazed by the amount of time and energy devoted in responding. Of course, I have many questions about what to do next and while I know this is something I need to decide for myself, I am looking for a bit of advice.

My background: I don't really remember having a sensitive stomach as a kid, but I definitely took my fair share of antibiotics. I first remember having issues when I went to Jamaica with my mom when I was about 12...I wonder if I could have picked something up there that stayed with me... interestingly I also started having seasonal allergies about the same time.
I have had an IBS diagnosis since around 2004 when I was having problems with persistent D. So, I guess my first question is, is it possible that I've had MC for this long? At that time I figured out that I was reacting to soy, and cutting that out pretty much resolved the issue. Since then I have pretty much been OK in the D department, although I always get D when I get my period and often when I don't get enough sleep or at other random times. I have also never had a good reaction to alcohol- I have always gotten D if I drank more than 2 drinks. In the past 9 or so years my life has also been rather stressful- my boyfriend has developed multiple chronic health problems and hasn't been able to work, the house we bought was in much worse shape than we knew, my job is very sedentary (I teach online) and we have seen multiple rounds of layoffs and more work for less pay over the years. I've progressively seen my health worsen with trouble sleeping and lack of energy. I have also had a general low-grade depression for many years.
This is turning into a long sob story , but I guess I may as well keep going... since my sleep problems seemed to cycle with my hormones, I started seeing a doctor in 2012 who specializes in hormone therapies (bioidentical) and she put me on a paleo type diet, which I managed to stick with for about a year and I started feeling better. I also tried taking progesterone, but that seemed to be causing digestive issues (mostly reflux), and didn't really seem to help with the sleep, so I stopped. One thing that helped somewhat with the sleep was iron supplements, since it turned out I had very low ferritin levels. I also started having heart palpitations last year (PVC's).

Right now, I honestly can't really say when the last time was that I had a truly well-formed stool. I'm sure it's been 6 months, but it may have been longer. I've been thinking for quite some time that I really needed to figure out what was going on with my digestion. About 2.5 months ago (coinciding with another big round of layoffs a month earlier and then the election, which I reacted very badly to) I started having a lot of gurgling and rumbling after I ate, and then after a couple weeks of that I started having persistent WD and rapid weight loss. I am a small person, so don't have a lot to lose. I started at around 121 and am now down to 108. I had the usual stool tests with no results and scheduled a colonoscopy. When this started I basically went straight to an elimination diet, since everything seemed to be irritating me. I was already mostly gluten free since my boyfriend has celiac, but I had actually been eating more gluten than usual the weeks before this happened. And drinking more too... I had done elimination diets before, but never cut out eggs completely, so I was curious to see if that would help. Just cutting out the wheat, dairy, eggs, nuts didn't seem to make much difference though.
I discovered the "SCD lifestyle" website, and found that they had a diarrhea protocol in their "Leaky Gut" program, so decided to try that, since I felt like I just needed someone to tell me what to eat. My current diet is very similar to what is suggested on this website: chicken, turkey, pork, beef (I try to get organic and grass fed), salmon, shrimp, bone broths, cooked veggies (cucumbers, zucchini, carrots, cauliflower, peas, some broccoli), and apple and pear sauce. Also using ghee and olive oil. I am also taking fairly large doses of digestive enzymes and have started a supplement regime of D3 (10,000iu/day), K, C, B, L-glutamine, and Iodine (I have a thyroid nodule now too, which was biopsied and found to be benign, and I don't appear to have thyroid disfunction). I just ordered some Magnesium after reading about it here as well.

So, with all of that I have reduced my trips to the bathroom from 3-7 to 1-3 on most days and have also seen a reduction in other symptoms, such as gas, cramping and a feeling of having to go to the bathroom even when I don't have to. Interestingly enough, I saw additional improvement after my colonoscopy, so not sure what that means! My stools are still not formed, and I still sometimes get watery ones, but I'm considering this improvement for sure and have been slowly trying to add more different veggies back in. I still need to give bananas a try...last time I tried a banana, it didn't go well, but that was also when I was still eating salads and fiber supplements...

Now the question is, what to do next? My doctor has prescribed me Budesonide. I am rather medication-averse, so haven't started it yet. The thing I'm asking myself is: is this going to help or hinder the healing process? I still feel quite vulnerable, like I could tip back the other way at any point, and I'm still trending towards losing weight, so I feel like I should at least try it, but the stories about weaning off are also a bit discouraging. I was just seeing the posts about LDN, maybe I should try that first...

Before the diagnosis I was also planning to do a more comprehensive stool panel (Genova Diagnostics CDSA), but am waiting to hear back from my functional medicine doc about whether or not I still should. I'm wondering if the sensitivity testing would be of more value at this point (they are both around $500!) since I may still be eating something I'm reacting to somewhat without knowing it.

Questions: Would being on budesonide interfere at all with the Enterolab testing? Do I need to be eating a food I am sensitive to in order to have it show up in the results?

Thanks for "listening"! I am thankful that I did manage to find the diet before things got even worse! Although I have been through many diet changes before, this overhaul has definitely been the most extreme and I am spending most of my free time cooking and eating. I am having to eat a lot more than normal to keep from dropping weight, so with that and the supplements my pocketbook is also seeing the strain and so is my relationship. My boyfriend and I are now talking about splitting up or at least living apart for a while. Living with someone who has chronic pain has been very difficult for me (and him of course) and now I just feel like I need to focus on caring for myself and not have the pressure of attending to his needs as well. That sounds kind of cold when I say it out loud! We are just both pretty worn out by everything we've been through, and I guess I just don't have much left to give....we were supposed to be going on our first real vacation together in March and we had to cancel it since I didn't know if I would be up to it...violins please!

[Gabes-Apg]

DB
welcome to our group
(sympathies for the diagnosis and having to find us)

some quick answers to your questions etc above

LDN - LDN has worked well for some with multiple AI issues. (not all) and if MC is your main issue I am not sure that it is a good choice
Enterolab testing and Budenside - you would need to be taking the budenside for over 3 months before it will impact enterolab test results
enterolab and foods - if you look the main tests that people here do (A and C panel) you will get an indication of things like gluten, Dairy, Soy etc even if you haven't consumed them in recent months

Regarding your diet, depending on how many posts you have read - double check the following;
quite a few people react to chicken and beef, so if you minimise these in comparison to other proteins this may help
buy good quality olive oil - cheaper versions have soy filler in them
maybe skip peas - those that react to soy can react to peas
are you cooking the cucumber or eating it raw - if raw, this maybe too much fibre at this early stage
also how much apple and pear sauce are you having?
and what are you having liquid wise? juice? soft drink? tea? coffee etc?

re the supplements
things like digestive enzymes are not always tolerated well in the early stages of MC healing.
Also double check the ingredients of all the supplements to ensure they don't have soy, gluten etc

In regards to your reaction to alcohol and that you are taking L-glutamine. again depending on how much reading you have done - alcohol issues can be related to 'Methylation issues' and based on this - depending on where things are at with methylation cycle some people can do worse with L-Glutamine - we have a section on Methylation it might be worth having a read.


Sorry it has been such a tough time for you and your boyfriend...
has he adopted the same eating plan and supplement plan as you? Quite a lot of what is suggested here diet wise and supplement wise helps a multitude of health issues. Especially when it comes to magnesium

hope this answers some of your questions.

[DB]

Thanks so much for reading my long post and the reply Gabes. To answer your questions:
The cucumber is cooked. I never thought I would be eating cooked cucumber, but it's actually not bad ;-).

Apple and pear sauce have been about 1/3 cup each/day. I was actually surprised that it was recommended for the diarrhea diet, but it's quite a treat considering everything, and feel like it's one way that I'm getting enough calories. I've been thinking I should give white rice a try for that reason.

Peas are something I added back recently. I didn't notice a significant reaction, but like I said, I'm also still having obvious inflammation, so yes, I feel like anything I'm eating could still be an issue. I also have a bit of a pea addiction and I know the foods you love the most are often culprits!

I drink mostly just water (sometimes with lemon added), and herbal teas. My go-to teas recently have been ginger, fennel and "throat comfort" (has slippery elm, orange peel, cinnamon, wild cherry bark, fennel seed, licorice root, black pepper, clove, mullein, ginger, cardamom).

I will definitely look into the methylation issues. The l-glutamine I also just started recently and have been slowly increasing the dose.

No, my boyfriend has not adopted the same eating/supplement plan. He also has Asperger's syndrome, so change is even harder for him... we have been eating together some of the time and he is more of the cook than I am, so he has been adapting to some extent, but he still eats a lot of the more processed gluten free snack food and he might lose it if he has to give up ice cream. I have tried to encourage him to get away from that, but it takes a lot more effort to prepare this kind of food and with the amount he eats I can't really keep up with the prep for both of us, and he is in pain a lot of the time (joint and muscle, due to EDS) so can only spend so much of that time and energy in the kitchen as well....I do feel like he could be helped with diet and supplements as well, but I can only do so much. I think I have him at least taking Vitamin D now!

[Gabes-Apg]

for that small amount of apple and pear - keep it for now
in regards to calories and weight - while there is excess inflammation you will struggle to gain weight, even If you tripled what you ate.
main aim for now is 'settle the gut'

drinks - skip the lemon for now (many here react to all citrus when inflamed)
re the teas - the combo one that you are having has a few high risk ingredients for MC'ers.
plain ginger and plain fennel 'MAY' be ok, so long as there no hidden ingredients (some brands of herbal teas can have soy and other contaminates during processing)

as you have probably read, MC is for life, and for where you are at right now, looking after yourself guilt free is a priority.
if he is not willing to make the changes necessary to get well, that is a huge pressure in the household for you.
it can take a few months to 'get into the flow' of your MC management plan, eating, lifestyle etc of what works best for you to minimise symptoms.
stress is a major trigger for many of us. and in those cases no matter what we do medication wise, supplement wise, eating wise, may not be enough to avoid symptoms if there is too much stress (whether that be emotional stress, physical stress and or mental stress)

the enterolab testing is the 'short cut' to identifying food triggers in your current eating plan. otherwise elimination diet is the other option, I did this and it took me about 6 months to identify my major and medium level food triggers.

my suggestion supplement wise - in this early stage of healing, go back to minimal basics like Vit D3, magnesium for now. sort out the safe eating plan. get some stability in your bowel motions and THEN test the other supps etc one at a time. if you started a few things in the past few months it would be hard to confirm which ones are causing you issues.

down the track with gut healing there is scope to add back these supps. Albeit while you have this level of inflammation in the gut you are not absorbing and processing all the benefits of the nutrients from those supps anyway...

keep reading and keep asking questions..
have you read the posts in the success stories area?? this is a good way to see what others have done, and how long it took.

[DB]

Wow, thanks so much for that detailed advice- much appreciated. Yes, yesterday I spent some time with the success stories! I had started in some other areas, but decided that I needed to hear the good news :-).

Yes, I've kind of been wondering about that tea- I didn't actually realize how many ingredients it had until I typed it out. I will take that one out of rotation. I would also be happy to simplify the supplements- it's a lot to think about. I did read about the methylation last night, but wasn't quite clear on the specific connection to the l-glutamine...?

When it comes to safe eating plans- I guess I'm having a hard time figuring out what is problematic and what isn't. Obviously if I go back into full-on D, then I will know that something is not good, but other than that, how do you read the more subtle signs? Do I just need to start eliminating specific items that I'm already eating, such as chicken, for a period of time and then add it back?

I'm still kind of dragging my feet about the steroids... I guess because I'm already on this path of testing things and feel like I wouldn't be able to do that while on the meds. I decided to start taking claritin for a few days and see if that seems to have any impact since I saw antihistamines mentioned as one helpful item (not sure if a few days is enough, but thought I would just see...). I thought that was interesting because most of the time I do take them on a daily basis and I'm wondering if that's what's been keeping my symptoms at bay. I hadn't been taking them much since fall, and the time that I was diagnosed with IBS I also wasn't taking them because I was in California and not having seasonal allergies...

Thanks for the relationship advice as well :-). We've decided to try living apart for a while and see how that goes. I think I am probably going to go and stay with my Dad in Canada for a month or so, and he is looking into buying a camper.... luckily he is being pretty understanding and supportive about the whole thing, even though being unsettled is very hard for him. But we've been in a not very good cycle for a while, so we both agree that a change needs to happen. It's better to have it out in the open, because I've been keeping it bottled up for a while, not wanting to deal with repercussions, and I'm sure that hasn't helped my stress levels!

[jlbattin]

DB,

I started budesonide just as soon as I was diagnosed and it was a lifesaver for me. It helped with the inflammation, the hurting, the gurgling, etc.............

I just recently had to go back to it because of a flare, but I didn't have to take it for very long and was able to taper it pretty quickly the 2nd time around...............the 1st time, I took it for almost a year and tapered it down very slowly so as not to have a relapse. It's one of the safer steriods.

[DB]

Thanks so much for sharing your experience Jari. Very helpful! Yeah, if I can feel better sooner, that is a good plan :-). I think my reluctance is probably also because I had a really bad reaction to a pharmaceutical a few years back, so I have gotten a lot more cautious. Of course, that one had a black box warning....

[Gabes-Apg]

Do I just need to start eliminating specific items that I'm already eating, such as chicken, for a period of time and then add it back?


there are two approaches to this
- do the enterolab testing as this will give you the foundation of safe eating plan
- go back to 2-3 protein types, 2 veges, home made bone broth based on the safe proteins and when the gut is settled 'try' ingredients

we suggest that you keep a journal, track various symptoms, ie gurgling, cramping, stool consistency, urgency, movements per day.
Also track things like sleep quality, energy etc. stress levels, relaxation activities. when you try things one at a time, it is easy to monitor symptoms to gauge if you are reacting.

relationship wise - listen to your gut! (pun intended) this is the tough part of things like MC, for some of us it pushes us into making decisions that we have been avoiding for a while...

I never took steroids for the MC - for the short term while you sort out eating plan and living arrangements etc it is a good option. so long as you take good doses of VIt D3 and magnesium, it is very unlikely to have long term impact

[Erica P-G]

Welcome DB,

All great suggestions stated here...

I am seeing a pattern and STRESS seems to be in most of the paragraphs here.....learning how to manage that one the best you can, and it sounds like you are taking steps to doing just that....we all have to

I just posted about Adrenal Fatigue....that is another piece of the puzzle everyone needs to understand about themselves, could be another thing to look into...I know I am looking forward to reading about it when my book arrives :-)

Cheers
Erica

[tex]

Hello DB,

Welcome to our Internet family. Gabes and Jari have addressed most of your concerns, so I don't have much to add.

Now the question is, what to do next? My doctor has prescribed me Budesonide. I am rather medication-averse, so haven't started it yet. The thing I'm asking myself is: is this going to help or hinder the healing process? I still feel quite vulnerable, like I could tip back the other way at any point, and I'm still trending towards losing weight, so I feel like I should at least try it, but the stories about weaning off are also a bit discouraging. I was just seeing the posts about LDN, maybe I should try that first...

Before the diagnosis I was also planning to do a more comprehensive stool panel (Genova Diagnostics CDSA), but am waiting to hear back from my functional medicine doc about whether or not I still should. I'm wondering if the sensitivity testing would be of more value at this point (they are both around $500!) since I may still be eating something I'm reacting to somewhat without knowing it.

Questions: Would being on budesonide interfere at all with the Enterolab testing? Do I need to be eating a food I am sensitive to in order to have it show up in the results?

As Jari points out, for most MC patients, budesonide will bring relatively fast suppression of clinical symptoms. And for those for whom weight loss is a concern, one of it's side effects is weight gain. Unfortunately it seems that it's more likely to cause weight gains for those who do not lose weight because of MC than for those who do lose weight, but of course not everyone is affected equally by various side effects.

The downside of using budesonide is that it will mask symptoms from food sensitivities for some patients, making the use of an elimination diet to track down food sensitivities difficult or even impossible in some cases. And corticosteroids have been shown to retard healing because of the way that they interfere with the inflammation pattern in the gut (inflammation is the first step in the healing process), and longer term use can suppress the immune system (the immune system is in charge of the healing process).

Another possible (somewhat common) side effect of budesonide is that it can cause hyperactivity and/or interfere with sleep. All that said, in most cases normal (relatively short term) use of budesonide does not seem to significantly interfere with healing, and in cases where it is effective, it definitely helps to make life much more pleasant while waiting for the diet changes to heal the gut.

In general, for most MC patients, our combined experiences indicate that the EnteroLab stool tests are much, much more accurate and reliable than the Geneva Diagnostics tests for detecting the type of food sensitivities associated with MC. If I had money to burn I might consider using both test methods, but since I don't, I always order the EnteroLab tests whenever I want to verify or rule out a food sensitivity.

Again, welcome aboard, and I hope that some of this is helpful.

Tex

[DB]

Jari, just curious, did you do the Enterolab testing? If so, at what point in the process did you do it? Thanks!

[Gabes-Apg]

Jari's results are in the enterolab result section
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=18305

[DB]

Erica and Tex, thanks so much for the welcome, feedback and support. Your time and energy is very much appreciated! I'm so glad to have found this community.

Erica, yes, stress has been a big problem for me for quite a while, and I honestly feel like I have somewhat brought this on myself by not getting out of unhealthy situations sooner. I've been trying to figure out an alternative career path for quite some time, but right now I'm actually just grateful to be working from home. I didn't mention that when I was seeing the doctor about the sleep issues that she had actually diagnosed me with adrenal fatigue, so that is part of the picture for sure. I was pretty non-compliant with the supplement protocol for that, so while I got somewhat better with the diet, I had further to go and then relapsed into worse eating habits. About 9 months ago I was doing a lot better with stress management -going to yoga and meditation classes several times a week and exercising more regularly, and then I had a very bad episode of positional vertigo (a problem I've had on and off for the last 17 yrs) that took about 6 months to resolve, so I couldn't do yoga at all and lost my way. I'm just getting back into it now... I guess I've just got to keep getting back up and dusting myself off! Right now, although I am still having some pretty unpleasant symptoms at times, I'm also having times when I feel pretty good, so I am grateful for that!

[jlbattin]

I did, and I did it pretty quickly after diagnosis because I wanted to know what foods to avoid and get on the road to healing as quickly as possible! I did it within a couple of weeks of being diagnosed.

[DB]

Thanks Jari and Gabes. You are quick on the draw!

Jari, I hope you are still feeling better after the flare!