MRT The Second Time Around

[Sheila]

Yes, this is an interesting thread, Polly. I've spent some of my bathroom time rereading parts of Tex's most excellent book. Polly, I was also thinking that Kari's segue from LC to ME may simply be a progression from one form of this disease to another. That made me consider having another colonoscopy and then I remembered why I don't ever want to have another one. I told my doctor he's going to have to catch me first if he wants me have another one.

Kari, I didn't know you were taking budesinide. For some reason I thought you were managing with diet alone. The first week off budesinide was great, no symptoms and felt well. Since then, very gradually, things have deteriorated. I had a few episodes of WD that I attributed to a small quantity of parmesan and 1/2 C chocolate Italian ice. I stopped taking S. boulardii and thought I had less gas but that was not borne out over time. Yesterday everything I ate I had prepared from scratch and still WD this morning. The stressful situation has been going on for a while but I didn't consider it be a causative factor. It has ebbed and waned.

As for the stress, Tex, my youngest son managed to find and marry a very beautiful woman who would give Lindsey Lohan a run for her money. She attempted suicide for the second time yesterday. This half-assed attempt was a culmination of excessive alcohol, pills and a mental illness, "borderline personality disorder". They are going to divorce but she is not making it easy. Once she is back with her family in Vancouver, things here should settle down. They have been married for 8 miserable months, each month worse than the last. People say the terrible twos are the worst. HA! The terrible 42s are beyond worse.

I'm going to read up on Mast cell issues. I do take Zyrtec every night but haven't even considered Mast cells in my food choices. I am worrying about the health consequences of taking budesinide, even at the low every-other-day dose, for the rest of my life. It certainly made my life more comfortable. By the way, Polly, I have tried eating white potatoes twice. The first time I had no reaction at all and the second time I started bloating immediately after dinner and had WD the next morning. Perplexing.

I hope you get yourself back to feeling healthy, Kari. It is so frustrating to have made so much progress and then have to go back to step one.

Sheila W

[tex]

Shelia,

That level of stress would probably cause most of us to suffer a relapse.


Polly,

Did your GI specialist request a mast cell count of the biopsy samples taken during your last colonoscopy?

Love,
Tex

[Polly]

Tex, Nope, but I will make sure it happens the next time around.........it'll be in 2 years.

Love,

Polly

[Kari]

Sheila - I firmly believe that stress causes symptoms, so I hope that you will notice a difference when your family situation resolves. I used to think that once my son grew up and became self sufficient, I'd stop worrying about him. However, the reality is that the worrying will never stop - and now that he has 3 children of his own, I have 3 more, plus my DIL, to worry about :).

You must have misunderstood something I said earlier, because you were right in thinking that I have healed with diet alone. As much as I have been tempted from time to time, I have not tried Budesonide.

Polly - certainly in my case, your theory of progressing from one form of colitis to another seems likely. After I felt so much better and thought I was near total remission, symptoms gradually got worse. Then, when taking Claritin for a constantly runny nose, norman showed up unexpectedly, and it clicked in my mind. I remembered all of Mary Beth's posts about mast cells and started exploring a low histamine diet. Unfortunately, Claritin did not work for long, and neither did other antihistamines. I wish I had been a lot more vigilant about a low histamine diet, as ME might not have developed. My big sin was to continue eating fruit. My latest MRT report shows high yellow for fructose, while my first one was low green.

I definitely agree that we should all include the staining for mast cells in our colonoscopies. If it wasn't for Tex encouraging me to have it done, I might not have asked for it. I wish I had known to get it done 5 years ago, as I wonder if both LC and ME were present then. However, it seems that in my case, ME developed after LC was resolved. Since your symptoms seem to be well under control, I doubt that you would exceed the ME diagnostic threshold if tested. However, there is certainly every reason to check it during a routine colonoscopy.

Love,
Kari

[Leah]

Kari, I always wondered whether there is something to the rotation diet thing. I rotate foods all the time, but not because I thought it would make a difference… but because I just get bored with eating the same things. Maybe because of that, I am able to eat more foods now then ever. Don't know, but it's an interesting thought.

Leah

[Zizzle]

I went to an allergy support group meeting with a local allergist who specializes in chronic urticaria. My MIL has chronic urticaria, and thanks to me, an ME diagnosis as well. He explained that mast cells tend to be opportunistic. They weren't always there...they migrate to areas of inflammation and then grow in numbers at those sites. So it makes sense that anyone with MC would eventually segue into ME if the inflammation does not improve.

My MIL's ME symptoms are varied. She's GF, but apparently small amounts of gluten don't bother her. A fruit and vegetable smoothie will give her tremendous bloating, but she kicks back huge martinis every night with no trouble I don't get it.

[Kari]

Leah,

Even though in my case it would seem that focusing more on food rotation would help, I'm not convinced that it is essential. I know a lot of people here are able to heal by staying on a very limited diet (I think that includes Tex). You're fortunate that you're a "foodie":), so it is natural for you to do the rotation. I still struggle with the whole cooking thing, but it is getting better over time.

Love,
Kari