Very limited progress...advice needed

[audreybutler22]

Hi folks,

For the last two months, I've been on a mission to cut out all triggers (per Enterolab testing) and get my poor stomach into remission.

I've been strictly avoiding gluten (of course, celiac), dairy, eggs, soy and legumes, chicken, corn, oats, almonds, walnuts... everything indicated by my Enterolab tests that were 2+ or above. For the 1+ foods (rice and beef) I've been rotating those in and out. My mean score for the 11 antigenic foods was 17, so certainly above normal but not astronomical either.

I take 400 mg of magnesium glycinate spaced out throughout the day + topicals, and 5000-7500 UI vitamin D per day.

I've basically been eating a lot of turkey, pork, well-cooked MC-safe vegetables, limited gluten-free grains like millet and buckwheat, coconut everything. I do some occasional GF/DF/EF/SF at-home baking using ingredients like maple syrup, coconut/arrowroot/cassava flour, and pumpkin. I have also been using GF spices sparingly and occasionally had homemade macadamia nut milk. I make everything from scratch in my dedicated GF kitchen and have cut out all premade foods, things with additives, etc.

And yet despite my best efforts... I've yet to see much progress. I was really hoping to meet Norman by this point haha. I still have the D 2-4x per day, though it's less watery than it used to be.

I've had years of significant stomach problems so maybe I just need to be more patient with the healing process? I'm young-ish (34) and was definitely expecting a bit more progress healing-wise. Maybe I need to simplify my diet even more i.e. no spices? Or maybe it's time to start investing causes of refractory MC like BAM, etc.

I'm desperate for advice or any wisdom you might have to share. This is all really starting to get me down.

Thanks in advance for your help :)

[tex]

Stress can be a major issue, because serious chronic stress can trump even the best of efforts. If that's not a problem, you might just need more time. I reacted for a long time (several years) before I modified my diet, and I had so much intestinal damage that it took me about a year and 1/2 to reach remission after I removed gluten from my diet, and started tracking down and removing the other problem foods. If you've had digestive system problems for longer than that, even though you're a lot younger than I was when I changed my diet, you might need even more time than I did. The intestines heal very slowly. We're all different, so it's impossible to put accurate estimates on recovery times. Sorry I couldn't be more helpful.

Tex

[audreybutler22]

Thank you for your reply Wayne. That's what I suspected. Sigh. A lesson in patience and perseverance I guess.

I'm trying to find things to be positive about in this whole mess, and one of the things that I think about frequently is how lucky we are in this day and age to be able to find such niche communities online and share information. How incredible to live in a time where dogged, intelligent people like you can access a range of publicly available scientific research, gather data, and create a platform to share insights with those who need it. If you'd lived a hundred years ago and had MC, you'd spend your entire life being sick as a dog and never know why or how to fix it. Anyway — thank you! You've been an incredible resource to so many thousands of suffering people.

[tex]

Audrey,

You're right on target. We have to maintain a positive attitude and look for signs of encouragement wherever we can, because if we dwell on the negative aspects of this disease, the stress and worry just make us feel worse. And you're certainly correct to point out how fortunate we are because of the technology available to us today.

A little over two decades ago, when my symptoms began, neither I, nor my gastroenterologist had a clue as to what the actual problem might be. My gastroenterologist thought I had colon cancer, so that's what he was expecting to find. Consequently he didn't even bother to take biopsies. So naturally he told me there was nothing wrong with me, all the tests and procedures checked out just fine. Back then, most gastroenterologists just assumed that MC was a disease of older women, and when I asked him what I should do to control the symptoms I was having, he recommended I see a good psychiatrist.

The Internet wasn't nearly as sophisticated back then, as it is today, and not as user-friendly, and I didn't really know how to use it all that well, anyway. I was just lucky to stumble across a research article on celiac disease and after I removed gluten from my diet, and started a journal of my food intake, and my symptoms, in about six or eight weeks I could detect that certain other foods were making me sick, so I started testing them and gradually tracking down all my food sensitivities. Since I didn't even know the name of what I had, I already had my diet perfected, and was in remission before I accidentally stumbled across an old MC discussion board. It didn't take but about 30 seconds worth of reading before I realized, "Hey, these people are just like me". They immediately made me feel as though I were home.

So just as you point out, we're so very lucky to have the research and the technology available at our fingertips, so that we can find relief, when the medical approach doesn't work. Thank you for that post. It made my day.

Wayne

[Marcia K]

Good morning, Audrey. I'm in remission for almost 10 years, but I still don't do well with grains. You might want to look at the grains you're consuming, even though they're gf. I recently tried organic, certified gf oatmeal and after eating too much of it my eyelid became inflamed & I had to get a prescription medication. I don't do well with gf flour, the only flour I use is almond flour and I don't bake very often. Danielle Walker has a lot of gf,df recipes online. She has UC and her first cookbook Against All Grain is very good. Best wishes on your journey to healing.

[audreybutler22]

Thank you Marcia! Yes, oats are a big no-no for me as well. The only baking I've been doing is with grains like millet and non-grains like coconut and cassava, but perhaps it would be wise to cut those out too for a while and see how she goes.

I'll certainly check out that cookbook, I appreciate the recommendation :)

[cloud9er]

Hi Audrey,

I’m like you I’m afraid that I’m still not in remission with diet changes, although I’ve had quite a few bumps on that road. You could try adding in exercise? Have you been on Budesonide before? You may need to wait a bit longer. Remember every major stress and virus you get will slow or stop progress.


Amy

[audreybutler22]

Hi Amy! Yes, I do strength training twice a week with a train and hot yoga once a week, plus 10K steps per day. With the classic MC fatigue, that's all I can manage.

I haven't been on budesonide, since it just masks the symptoms, and the vast majority of people using it relapse as soon as they stop. So opting for the diet route. I think I just have significant damage and will need to have patience with the healing process, though it is really hard and discouraging. I have a work trip to LA in April that I am dreading, no idea how I'm going to maintain the diet.

[tex]

If you're still not in remission before April, it might be worth considering bile acid malabsorption (BAM), and a cholestyramine treatment. The details of doing that can be found in the newsletter published by the Microscopic Colitis Foundation on January 1. You can read or download a copy at the following link:

https://www.microscopiccolitisfoundatio ... mplate.pdf

if worse comes to worse, a budesonide treatment might allow you a temporary reprieve from your symptoms while you're on that trip to LA.

I hope this helps.

Tex