LC and Mastocytic Enterocolitis -- what next?

[Zizzle]

Hi all!
It's been a while! I've been in maintenance mode, still with D, but manageable for many years. I'm still GF/DF/SF and now egg free (although I still eat eggs in baked goods). I miss them terribly, although I just experimented with duck eggs and did OK.

I had my first colonoscopy since my 2009 diagnosis and my first-ever endoscopy last month. My new GI specializes in women with autoimmune diseases.

My endoscopy was fine, just some mild gastritis, and NO villus blunting, so no untreated celiac despite my HLADQ2 genetics and cross-contamination exposures. Yay!

My colonoscopy showed patchy LC in all of my colon biopsies, and I asked her to stain for mast cells and they did...my results were more than 20 mast cells per high powered field, when normal should be less than 13. Of course we don't think I have mastocytosis, and elevated mast cells are seen in IBDs and IBS, so most people think they are of limited significance. So I suppose I have Mastocytic Enterocolitis on top of the LC? I wonder if they are the cause of my occasional total rejection of food - racing to the toilet episodes? Particularly after alcohol and other high-histamine foods? And after mental/emotional stress triggers? I've read mast cells are very responsive to mind-body triggers.

She's willing to try cromolyn sodium (Gastrocrom), but I note you must take it 4x day and it has unwanted side effects like headache, nausea, and D! Not worth it!!! Doc also wants to start me on Budesonide, which I've never tried. I slowly weaned myself to a tiny steroid dose for my autoimmune disease (5 mg hydrocortisone), and I'd like to stay there, so I'm thinking I'd only accept 3 mg Budesonide, not 9 mg, since the systemic spillover dose would exceed the amount I'm used to. In other words, I only want to replace my current steroid dose, not add to it. I note Budesonide will reduce mast cell concentrations, which might help.

Or should I give Cholestyramine another try first? I never gave it more than a week.

Decisions, decisions!

Thanks for your thoughts!

Zizzle

[SumSum]

Hi, I'm a newbie though not new to MC - diagnosed 2013. I have no idea what's best. I'm taking budesinide right now. My husband was on low dose steriods for quite a while and slowly weaned off too, so I can understand your concerns with another one. However, the systemic effects are so much lower with Budesinide that I don't think you can compare the mg directly. I would talk to your doctor about your concerns.

Good luck!

[tex]

Hi Zizzle,

Sorry to hear that you've received another diagnosis. You know, I haven't heard anything about Mastocytic Enterocolitis (ME) in quite a few years. Nor have I noticed any new research on it. But then, I'll admit that I haven't actively searched for any research about it, either. But the lack of publicity makes me wonder if the medical community Is just sweeping it under the rug, or if ME is simply a side effect of most IBDs, for certain patients.I note that in my own case, my histamine/mast cell issues continue to increase, especially when seasonal inflammation issues, such as pollen allergies are present. The added heat from a hot shower makes a reaction worse, so I assume that stress would also have a similar effect. But histamine/mast cell increases cause me to have an Itchy rash, rather than MC symptoms.

The right dose of the right kind of colestyramine seems to work for quite a few people who have tried unsuccessfully for years to stop refractive diarrhea. The treatment doesn't seem to work early on, because we have to get all the food sensitivities out of our system first. But if carefully following the diet for years doesn't bring remission, colestyramine is often the key to remission. You have to experiment to find the right dose that will work for you. Many brands do not seem to work. So far as I'm aware, the vast majority of patients who have achieved remission by using colestyramine, have used the Sandoz brand.

If you try it, I hope it works. Keep us informed.

Tex

[HockeyMom]

I’m not trying to sway you one way or the other...but as someone who needs cholestyramine and has fiddled with dosage and brand for 5.5 years now...one week of experimentation with it wouldn’t have shown me much improvement either.

I’d say you need to give it a solid month...and even then..increasing the dosage was the key for me. And honestly, the starting dose seems ridiculously low to me. It isn’t heroin, geez. I take 8 packets a day as a 123# woman.

Laine

[Zizzle]

My GI said Cholestyramine is not a treatment or cure, it just helps with symptoms. She really wants me to try Budesonide, starting briefly at 9 mg and tapering down, and says it has the potential to treat and stop the MC. I had cited the high risk of relapse. I plan to discuss it with my dermatologist-rheumatologist before I do anything. I've spent years tapering off steroids and I'm down to my last 1.5 milligrams. Do I really want to become steroid-dependent all over again?

But what if I'm one of the people who just needs a break from the inflammatory cycle to stop the LC?

I'll take my Cholestyramine in the meantime and see what happens.

On second thought...9 mg Budesonide is equivalent to 30-40 mg prednisone? 3 mg is equivalent to 10 mg Pred? NOW WAY!!! No wonder it works!

Based on pharmacokinetic and bioavailability studies, 3 mg of budesonide is equivalent to 10 mg of prednisone. Starting dose of budesonide will be 9 mg by mouth daily which will be equivalent to 30-40 mg of prednisone used as standard of care.

[tex]

I Zizzle,

Apparently your gastroenterologist is either naïve or ignorant of the fact that published medical research shows that 40% of refractive diarrhea cases (Including MC patients) Who do not respond to normal treatments, are caused by bile acid malabsorption (BAM). One of the reasons why budesonide is effective is because cortisol regulates bile acid uptake in the terminal ilium. Consequently, any corticosteroid will help to treat BAM, although it may not be as effective as cholestyramine. The other reason why Budesonide Helps to resolve Inflammation, is because it suppresses mast cell populations, so the combination makes it effective for treating IBD's. But in cases where BAM is the primary, or remaining problem, selecting cholestyramine as the primary treatment over budesonide Is a no-brainer, because cholestyramine, although not particularly pleasant to swallow for many people, is one of the safest medications ever developed, with the only adverse side effect being constipation, if a larger dose than needed is used. And most people benefit from the fact that cholestyramine will reduce their cholesterol level.

That's why the majority of the relatively small percentage of people who come here and are unable to achieve remission by following a safe diet, find that they can resolve their symptoms simply by experimenting until they find the right dose of the right brand of cholestyramine. In other words, by using cholestyramine the way we recommend on this board.

Tex

[Zizzle]

Ok, Tex, I'm going for it! Cholestyramine all the way!! Polly is advising me on dosing. I have a big tub of the flavor-free plain stuff. It's expired, but I doubt it matters?

[HockeyMom]

I will only say that brand seems to matter. And that your GI doc is a bozo. 2 rounds of Budesonide didn’t do anything for me and radical eating like a Plains Indian didn’t do it for me either...and I was crazy religious about the diet thing because I was pretty sure MC was going to kill me.

Bile acid malabsorption appears to be a genetic thing for me. On my moms Swedish side. I honestly saved myself. With input from this site. If I was still doing the crappy stuff my GI docs recommended...I’d either be dead or home bound on disability and miserable. As it stand, I am back to my fighting weight, I am able to have a normal life and life is good. BUT...I have to also take Betaine HCL...when I don’t my poop slowly goes the wrong way...and when I try to wean off magnesium I start getting anxious and my sleep starts going bad. I take fat soluble vitamins because of how much cholestyramine I take.

I am where I am because cranking up the cholestyramine saved my darned life. Maybe that sounds dramatic...but it’s not. I promised myself that if I got out of that mess then I would try and help others like myself who failed with everything that helped the others. Believe me...8 packets a day just sounded ridiculous and sorta scary. But it’s what works for me, and I am not Andre the Giant sized. I had no other options....

Sorry for the rant. It’s been a long week as a PT on the Covid floor at my hospital.

Laine