Help! Finally posting, this has been going on way too long

[tiffanyvaughn]

Hi all, I've been on and off of this forum for a while now, reading and learning as much as I can. I have both of Tex's books, and I'm so grateful for them. I remember thinking "hallelujah, there is a God, someone actually wrote a book about this!!" I don't know why it's taken me so long to get the wherewithal to post and get some help/feedback, but here I am. I think I've kept looking for and wanting there to be some other answer, root cause of this, easier way out, I don't know. I do keep coming back to this site though. I was diagnosed with MC, CC in 2004. It had probably been there for some time before that, but was mostly alternating diarrhea/constipation for a long time through my young adulthood. As a kid I mostly suffered constipation. I briefly took asacol when I was first diagnosed but it never helped and I never tried budesonide though it was recommended. I really wanted to try and find alternative, diet related management. I've tried lots of different food approaches over the years; SCD helped a little but didn't last. I went GF/DF off and on and finally completely GF/DF for a few years now, and mostly egg and soy free, though that has been on and off. I'm completely G,D,S,E free now. Earlier this year over the summer I totally indulged in soy and had eggs in gf baked goods. The most success I've had with diet was early this year(jan-march) when I did an AIP paleo approach diet. It's very strict and not far off of what is recommended here, basically removing all inflammatory foods. I now see that I was likely starting to see some healing...some days I would have ribbon stool, some actual form, maybe a pile of mud, instead of just loose WD. It was not consistent and I couldn't figure out what was going on. I now see that's probably just the nature of this for a long time possibly while healing. At the end of March/early April as I was reintroducing, following their protocol, I flared back up again, I think eggs did it, and instead of going back to square one, I kept reintroducing, couldn't pinpoint what was what and got frustrated and "gave up".

I've had enterolab testing done twice...fall of 2017 and March of this year. The first one I did the B2C2 and meat panel just to get the most comprehensive view I could. Gluten, casein, egg, soy, oat, TGG all elevated(egg and soy were prob 11 or 12, but gluten in the 200's, dairy 44, oat pretty high too). Sesame, garbanzo, almond, walnut, potato, rice, corn all 10 or above. I think cashew was the only thing below 10. Order of meat was tuna most reactive, then chicken, beef, pork. The fecal fat score was normal though. It felt pretty grim food-wise and I was in tough shape. It was also a hugely stressful time a couple of years ago. I did the A1C1 panel in March and my scores had improved. Gluten, casein, egg, and soy still there, but gluten and casein had decreased. Egg and soy still right around 11-13. Oat still a factor but less I think. But rice, potato, and cashew were below 10. Corn most reactive grain, Almond still the most reactive nut, followed by walnut. Meats still same: tuna, chicken, pork, beef. Everything was in the 1+ category, no 2+ or 3+. And yeast had fallen below 10, fecal fat still normal.

I hope I'm not too bizarre of a case, but I feel like in some ways I am. I've been a high level endurance athlete most of my life, bicycle racing, triathlons, running. I'm sure the physical stress of all the training and exercise has not helped in some ways, but mentally it always has! I still err on the side of too much exercise probably, but being older(I'm 53 now) and having a family(husband, 2 kids aged 10, 8...yes I was old-ish having them, 43 and 45!), plus working as a massage therapist has kept me in check. Not to mention the WD!! Since having kids, running has been my main go to. For many years, I felt like this was "manageable", meaning I could work my way and life around it. It was mainly in the morning, 3-4 episodes, then ok. Even when it got worse, I still felt I could work around it. It was definitely becoming more of an issue on runs and I'd have to "pick my course" so to speak so I could pull off when needed. I know, it's crazy, but this is what athletes do. Override the body's signals to accomplish your goal. Menopause definitely kicked things up several notches a couple of years ago and things have been a lot worse since then, probably last 2-3 years. I now feel as though I don't even get complete evacuation unless I go for a run or fast walk. Or possibly/likely the jostling aggravates the intestines and makes the situation worse? Does anyone else have this? I know adrenal fatigue is an ongoing component for me too and this is likely exacerbating things. Sometimes the D goes on throughout the day, into evening.

Fast forward to now and I am getting myself wrapped around just how SIMPLE and low variety this diet has to be. I've had a really hard time with that because I love to cook and futz around with food, but I can now see it is impossible to figure out what are triggers and what is ok without being super simple. Right now I'm wondering if I'm too far gone to try and get this in check with just diet. I am basically eating just meat, mainly pork, turkey, lamb, beef, some fish. A little cashew butter, coconut butter and coconut oil, olive oil. I was doing carrots and zucchini/summer squash, occasional rutabaga, occasional winter squash, and collards or chard, green beans, for vegetables,all well cooked. A little fruit(banana, pear, apple, kiwi, avocado), white jasmine rice, very rarely sweet or white potato(horrible gas). I always felt bloated, gassy, uncomfortable, especially with the veggies I now realize. Starches have always given me gas, but rice was probably the least intrusive. So for now, temporarily at least I'm just doing meats and fats. I'm at about a week now of this. I am less bloated and almost no gas, but the loose stool has gone completely to very WD. As if I can't digest this at all. Is this ok for awhile? Just a transition period like I've read on some of the carnivore blogs? Or maybe not such a good thing?? Are we aiming for the least amount of gas/bloating/distress as possible, or is it better to put up with some of that just to get enough calories and nutrition in? I was thinking I would try and follow the enterolab results mainly, and eliminate anything that I know irritates my gut, but now I'm not sure what to do. Stick with just meat?, add in rice, maybe a couple of nonstarchy veg? Bananas? Feeling pretty run down and desperate and wondering if I should just try the questran or uceris/budesonide. I was very much hoping not to have to go that route. I should also mention that I had a really bad low point of probably adrenal exhaustion about a year and a half ago, that has taken a looooong time to crawl back out of and I sort of feel like I may be heading back down that hole. I'm pretty skinny too, about 100lb, 5'3", though that's not terribly underweight for an athlete runner type. For me though my normal good weight was about 110-115.

It would be super helpful to me if there's anyone out there who can relate to my particulars and what has or hasn't worked. I've learned a lot from this site and Tex's books, but I feel like I still need guidance, maybe reassurance, particularly on what to do now. I'm sure I have more questions, but that's it for now. Thank you Tex and all of you. Look forward to hearing back!

Tiffany

[tex]

Hi Tiffany,

Welcome to the group. I read your post, and I have some thoughts, but as slow as I am, composing a decent response won't be a ten minute job. Since it's already past my bedtime, I'd better take a shower and hit the hay, and tackle this tomorrow when I have some time to devote to it.

Incidentally, your early symptoms sound a lot like mine.

Tex

[tex]

Hi Tiffany,

You seem to know what you what you need to do to get to remission, and you appear to be on track. Recovery may be more difficult after so many years of reacting and almost-successful attempts to recover, but it is certainly not too late for recovery to be doable. The tenesmus is somewhat common with MC, and I'm not sure if it's a sign of relatively severe inflammation, or conflicting nerve signals in the colon/rectum due to a specific aspect of the inflammation. At any rate, it should resolve as your symptoms improve.

Yes, a simple diet is the key to remission for MC. Variety may be the spice of life, but it's the nemesis of MC patients who are attempting to stop the inflammation and heal their intestines. Starches are very difficult to digest when MC is active. It's helpful to select starches that are easier to digest during recovery (if you're going to eat starches). Please refer to the suggestions in the article at the link below when selecting starches during recovery.

https://www.microscopiccolitisfoundatio ... 633360.pdf

And obviously, only select starches that do not cause you to produce antibodies (according to your EnteroLab results).

If your stools have turned to WD after a week on an all-meat and fat diet, that's not a good sign. But the lack of bloating makes me wonder if you just might be eating too little fat (rabbit starvation or protein poisoning) or too much fat (steatorrhea) at this point in your recovery. If you were reacting to one of the foods, you should have at least some bloating, unless I'm overlooking something here. You definitely need a certain level of fat with an all-meat diet to prevent protein poisoning, but too much might act as a lubricant.

After reacting for so long, I can't help but wonder about your vitamin D and magnesium levels. Some of your "B" vitamins might even be depleted. But if you've always eaten a lot of meat, deficiencies are not as likely.

Properly done, an all-meat (and fat) diet has been used successfully to resolve some mighty tough cases among the members here. But if you're expending a lot of energy, you may need some of the extra calories available in carbs to keep from losing weight. Sometimes we have to cut ourselves some slack, to keep from overdoing it, because the body uses a lot of our available energy and other resources (vitamin D and magnesium, for example), just to fight the inflammation.

Anyway, those are some of my thoughts.

Tex

[brandy]

Hi Tiffany,

Sometimes it is tough to know which path to take a couple of things jump out

1. If you decide to stay on the mostly meat I'd throw in some starches due to your activity level.

2. It sounds like the AIP paleo worked well for you and you were very close to solid stool. If you give the
mostly meat 3-6 weeks without improvement I'd probably transition back to the AIP paleo.
DO NOT BE QUICK TO ADD IN FOODS. WHEN YOU GET RIBBON STOOL KEEP DOING THE SAME
THINGS YOU HAVE BEEN DOING. DO NOT ADD ANY FOODS BACK IN UNTIL YOU GET NORMANS WITH NO
WD DAY AFTER DAY FOR LIKE 6 WEEKS.

We get a lot of lady runners on here. You also strike me as type A. Be aware that healing can take along time.
We are talking years and months here not days.

Polly is a MD on here who also has MC. She posts once in awhile. In terms of meds she ranks them:

pepto bismol protocol>>>>>>>>cholestyramine>>>>>>>>>>budesonide (Entocort/Uceris)

The left side is most benign and the right side is the big guns.

I've done all 3 drugs and I've also done diet to get into remission. All 3 of the drugs work for me.

Given that you feel run down, you've been struggling with this for a long time, you have 2 kids, husband and a busy
work life and you like to run it is not a failure to consider one of the drugs.

Since you have fatigue consider:

1. Keep an eye on your iron/ferritin scores when you have bloodwork done. I was your age and ended up
with low ferritin.

[tiffanyvaughn]

Tex,
Thank you so much for your replies and thoughts.
That's a bit of a relief to hear that tenesmus is somewhat common with MC. It definitely feels sometimes like it's a nerve signaling problem, as if I can't "go" unless there's also great urinary urgency. So maybe there is more severe inflammation or something specific with the inflammation down there.
I forgot to mention that I have been taking MgSRT by Jigsaw, and Mg glycinate at night for at least a year now. I also frequently use Mg spray/lotion. I don't know how much good it's doing...I had my levels of Mg and vit D(along with Copper, Zinc, vit A,ceruloplasmin, ferritin, total iron, transferrin, part of Root Cause Protocol blood test) tested back in March and RBC Mg was 4.5; D,25-OH, Total, IA was 21. I know those are really low, and that's actually about the time I was seeing a tiny bit of healing. I've taken tons of supplements off and on over the years, but since finding you all, mostly less, realizing they're probably going right through and maybe making things worse. It doesn't seem like the Mg makes the diarrhea worse, meaning it's the same whether I take it or not. I figured maybe some is getting in there. Recently I've started using a different bcomplex(I was taking an oral methylated one before) called nutripatch Bcomplex, and I've been taking a whole foods vitc for a year or so in the form of adrenal cocktail by Jigsaw(it's a combo of acerola, redmond's real salt and potassium bicarb). I take Pure brand vit D drops(D3 cholecalciferol from lichen, with K2), 5drops=5000mg.(or units), B-5(for adrenals), and mixed tocopherols vitE(Lif Extensions), Rosita extra virgin cod liver oil. I also use progesterone cream.

I'm homozygous for MTHFR A1298C(not the homosysteine buildup one), which as I was told, means I don't detoxify well, which certainly makes sense given how I feel sometimes...like I'm moving through molasses or the energy just isn't getting into the cells, nasty back of neck/head headaches, like a hangover but have had no alcohol. These "toxic" feelings seem to somewhat coincide with what used to be menstrual cycle hormonal fluctuations. This could also help explain my somewhat compulsive need to exercise...it's another way to get the toxins out.

I've always eaten meat, just not exclusively or this much. This is very recent and new. I had never heard of protein poisoning! This is certainly how it feels though, at least a couple of times over the last 7-10 days since I started doing this. And definitely the way it's coming out like water, like my body is saying something's no good here(beyond the usual loose D). It's possible too that I'm not getting enough fat in(rabbit starvation or protein poisoning), but I have definitely seen an oily scum on the surface of what's in the toilet which seems like too much fat. I've been figuring it's just been too much all at once given my poor digestive capacity. I have taken digestive enzymes and HCL supplements off and on and honestly I don't feel like they made any difference.
Even though my enterolab results indicated that beef and pork were my least reactive, they've always felt very heavy, don't settle well, especially beef. Pork is sometimes ok. It feels like the fattier meats(lamb included) are tough. Since chicken was higher reactivity, I've gravitated more towards turkey. I don't eat tuna much anyway, but do eat a lot of salmon. Question about this: If tuna is the highest on meat reactivity, does that mean to avoid all seafood/fish? Or just tuna?

And Brandy, I just read your post as well, thank you so much for your thoughts and recommendations! That's good to know about the pepto>>>cholestyramine>>>budesonide. It was actually one of your recent posts(I think it was recent) to another newish member about ribbon stool that clicked/rang a bell for me and got me to thinking and realizing that I was actually on the right track there a few months ago, when at the time I thought something else was wrong, like geez now I can't even have normal poop anymore, what's this worm like thin stringy stuff??!! And feeling backed up to boot. Is that normal at first when ribbon stool is starting to happen, that one feels like they are almost constipated? I will def not add in foods to soon this time. And I'll really keep in mind how long this can take....it's so hard to know if I'm on the right path and eating foods that are ok if it's just D on and on. I have to keep reminding myself of what Tex and others have said that you can't really tell what's causing a reaction or problem until the inflammation calms down and the D stops.
Yes, I definitely have type A, driven, achievement oriented tendencies. Though a lot less than when I was younger, thank god. Not that that's a bad thing, but I can be hard on myself. Thank you for the heads up on the ferritin(it was 32 and total iron was 126, iron binding capacity 325, and %sat 39), which were within normal according to the chart.

Thank you both so much for the encouragement and suggestions! This has been very helpful and I am incredibly grateful to be able to share all this and ask all these questions. I hope I'm not being too long winded, but if any of this helps someone else, that'd be awesome. I learned a lot from members who posted detailed descriptions of what they were experiencing and what they did or didn't do that worked or not.

Tiffany

[Deb]

Tiffany, this may or may not be of help to you. I have pretty much been in remission for years. I started eating mostly keto in April with primarily protein and fat and limited green vegetables. I had diarrhea for four months. I stuck with it though and everything is now back to normal. Gut bacteria upheaval? That's my guess. It's a change and my body is sensitive to that. Deb

[tiffanyvaughn]

Deb thank you, that is helpful! Wow, that's a long time (4months) to have diarrhea while you were going keto. How did you push through and/or not wonder if it was a flare? Did you have a place where you thought "I'll go this far with it and if I still have diarrhea at that point then plan B"?
I can see where gut bacteria upheaval could be part of it.

[Deb]

I guess I can only describe it as feeling differently. It started almost as soon as I started keto. My last Enterolab showed my only sensitivity anymore is gluten (where I started with all the major ones). The diarrhea was mostly limited to mornings unlike my MC which wasn't. It didn't appear to be related to food intake times. Just different. I just decided to ride it out and see what happened. I'd be pretty wary of going back on carbs on a regular basis in case it might happen in reverse.

[brandy]

Tiffany, this may or may not be of help to you. I have pretty much been in remission for years. I started eating mostly keto in April with primarily protein and fat and limited green vegetables. I had diarrhea for four months. I stuck with it though and everything is now back to normal. Gut bacteria upheaval? That's my guess. It's a change and my body is sensitive to that. Deb

Interesting......