I Don't Know Where to Start

[MO]

This forum, while full of information, has so many threads that it's a little overwhelming (I read the welcome to newbies section, but I honestly don't know where to go next). I'm creating this post; maybe someone can help me.

I had a colonosopy and biopsy and was diagnosed with lymphocytic colitis in mid-June. I started having symptoms in April, though just in the evening. I went to my PCP (at this point, I had cut cheese and soda completely out of my diet), and he referred me to a GI doc, whom I saw in early June. In the couple of weeks leading up to this appointment, I got much worse. I had issues not just in the evening anymore, though never after I went to sleep. I didn't know what to eat, because I didn't know what would trigger symptoms, so I lost some weight. Since it would be a couple of weeks before my colonoscopy, the GI doc put me on a low FODMAP diet, which gave me significant relief in about a week.

After my diagnosis, he told me to take pepto bismol for 8 weeks, and to stay on this diet, which I did. This combination resolved most of my symptoms. I stopped taking pepto about two weeks ago, and I didn't have any loose stool in the weeks leading up to that, though I did have some mild abdominal cramps. But since I've stopped taking it, I've had two bouts of loose stool.

I emailed him right after I stopped the pepto, wondering what to do next, and his only recommendation was to stay on this diet. But this diet is not designed for long term use, and there's evidence that doing so could lead to nutritional deficiencies and an altered gut flora (not in a good way). The strict elimination phase is only supposed to last for 2-8 weeks, and I've been on it since early June. I told him about my concerns, but he didn't address those. I think, in his mind, I got much better, so case closed. I asked him to refer me to a dietician. He said he didn't think this would help, but he was happy to refer me. I'm still waiting to meet with them.

I'm wondering, could systemic inflammation be my problem? In addition to LC, I also have eczema, pernio, and vestibulodynia, all inflammatory conditions. I've been to different doctors for these, but I think they all see my symptoms improve and send me on my way. Only I can connect the dots, so to speak. I did cut out all cheese early on, but I was still eating gluten. Once I started the low FODMAP diet, I eliminated gluten, but not caesin (the low FODMAP diet is lactose free, but not dairy free). I'm thinking that maybe the pepto was holding my symptoms at bay, and that once I stopped taking this, my symptoms are gradually returning. I seem to be worse after eating cheese, however, this could just be wishful thinking on my part.

I know that MC is a form of IBD, and that many people remain GF long-term, but does anybody have experience eliminating caesin? Thoughts?

[tex]

Hi MO,

Welcome to the group. You're right — doctors don't really know what to do after the initial treatment, because that's as far as their training and experience goes. Most of us have to also avoid casein in order to stop the inflammation.

Regarding systemic inflammation, yes you may have systemic inflammation to some extent, but inflammation always originates in the gut. If you stop the inflammation in your intestines, any systemic inflammation will disappear. Members here who successfully control their MC symptoms often discover that all sorts of previous problems such as psoriasis, arthritis, etc., also fade away after a while. Healing is somewhat slow (often a couple of years), but it's usually a profound, life-changing experience.

To get started here, if you need more convincing about the diet changes that are usually necessary, you might look at some of the posts in this forum:

https://perskyfarms.com/phpBB2/viewforum.php?f=71

if you want to see basic diet and recovery suggestions, you might read some of the posts here:

https://perskyfarms.com/phpBB2/viewforum.php?f=79

The secret to controlling MC (and all other autoimmune issues) doesn't lie in any particular diet, because we are all different. The key to gaining effective control is to eliminate every food (and medication or supplement) that is causing our immune system to produce antibodies (which result in the production and release of inflammatory agents by our immune systems). Again, welcome aboard and please feel free to ask anything.

Tex

[Gabes-Apg]

Welcome.

Where to start - breathe relax.
Hundreds (over a thousand or so) people have been in same situation as you when they come to this group.
The link provided by Tex should answer eating plan questions.

Re casein, it is highly inflammatory to everybody, IBD or not. To optimise healing we strongly encourage avoiding casein. Quite a few here after god healing can have small amounts of casein again.

Please read the posts in the member success stories area, here you will see what others have done and how long it took. Hope this helps.

[SN8888]

There's a book on Amazon (written by Tex, aka Wayne Persky) that covers all of this:

https://www.amazon.com/Microscopic-Coli ... fkmrnull_3

Sometimes it's easier to read from a book than a computer screen...

[tommyboywalker]

There's a book on Amazon (written by Tex, aka Wayne Persky) that covers all of this:

https://www.amazon.com/Microscopic-Coli ... fkmrnull_3

Sometimes it's easier to read from a book than a computer screen...

Yup, lots of great information on this forum. Use the search function for specifics.

But please do yourself a big favor and buy Wayne's book as mentioned. There is no better money spent on understanding MC than what you will learn with this book.

[MamaFill]

Hi Mo - I started with eliminating gluten, dairy and soy while adding the magnesium glycinate and Vitamin D.

Hope that helps

Cathy

[MO]

Thanks for the replies! I have the book on a wish list; if it's not gifted to me, I will buy it. FYI, I thought this was unrelated, but apparently inflammation can be factor in cancer, too. A couple of years ago, I went to neurologist for poor balance and he ordered an MRI. It revealed a brain tumor in my cerebellum. The neurologist thought it was benign, but surgery revealed that it wasn't. It was very malignant, a grade 4, stage 1 medullablastoma, a pretty rare tumor in adults. Anyway, I went through all the treatments and it appears to be gone, but now I have a hole in my cerebellum, so walk with a walker, have double vision, and garbled speech. And then I developed LC. Yay, me!

[MamaFill]

I'm so sorry to hear that, Mo. I hope at the very least your LC will get under control soon!