Good News and Bad News

[Kari]

Hi PP friends,

Two weeks ago I did my 5 year colonoscopy (I do it every 5 years since my mother had colon cancer). Yesterday I got a call from a nurse, telling me that the GI wanted me to come in to go over the results. I asked if she could let me know what the report said, and she told me that my diagnosis is Mastocytic Enterocolitis. This certainly did not come as a surprise, as I have been suspecting it for many reasons. So I asked if I still had LC, and she said there was no mention of it in the lab report .

As much as I don't like my new diagnosis, I have to say that the positive LC news outweigh it. I'm keeping my fingers crossed that I can trust the nurse's information. I will find out for sure when I see the GI on Tuesday.

In other good news, the rectal polyps my PCP diagnosed, turned out to be 3 harmless skin tags that do not need to be removed, and my colon looked clean - yeah!!!

As for dealing with ME, I printed the list of the foods with histamine that Jean provided a while back, but in checking the list, I don't eat much that should be troublesome. I do eat avocados from time to time, and will eliminate those. I also eat Udi's whole grain bread, and will eat less of that because of the yeast.

If you read this Mary Beth I'd appreciate any input, as I know you've been successful in dealing with Mast Cell issues. If anyone else has some advise/insight I'd also appreciate it.

Tex - guess I am a perfect example of the "difficult cases" in your book, where you wrote quite a bit about ME. Now I'm wondering which came first - LC or ME??? I'm sure they did not do the stain for mast cells during my earlier colonoscopies - this time it was only done because I asked for it.

Love,
Kari

[mbeezie]

Hi Kari,

I agree, good news, bad news. Here is a low histamine diet http://www.mastocytosis.ca/MSC%20HT%20R ... ov2012.pdf Are you having other mast cell symptoms or is it restricted to your GI tract? I wonder how many other people diagnosed with MC are undiagnosed with mast cell issues. Kudos to your doc for doing the tryptase stain.

If you need help please PM me.

Hugs,

Mary Beth

[wmonique2]

Kari,

Interesting results you have there...I know I have mast cell issues which was never diagnosed until I learned it on this board. I am curious to hear if you actually don't have LC. Very curious.

Interestingly, the list that MB has provided here is quite different than the one we got from Jean. I follow Jean's list and since I started following it I am doing seriously better. I wonder why the lists are so different.

Maybe MB can shed some light on this...

thanks MB...

Monique

[tex]

Hi Kari,

That's definitely good news that your exam showed your colon to be polyp-free. The discovery of ME is certainly a bummer, though.

My guess is that the ME was there originally, but as you say, since they didn't bother to look for it the first time around, we can only guess at this point.

Did you happen to notice the discussion in chapter 14 about how vitamin D affects mast cell development (on pages 176 and 177)? This suggests that higher levels of vitamin D may help to suppress excess mast cell development. But of course, that has not been verified by any random, controlled research trials, so that's just speculation on my part, at this point.

Another reason why an adequate level of vitamin D is essential for proper immune system function can be inferred from the fact that vitamin D plays a vital role in regulating the development of mast cells.20 Baroni et al. (2006) showed that mice without vitamin d receptors produced mast cells that matured much more rapidly than mast cells from normal animals, and their mast cells were much more sensitive (subject to inappropriate degranulation). These researchers also showed that mice without vitamin D receptors produced more mast cells than normal mice, thus creating a potentially unstable mast cell environment that predisposes to a proinflammatory environment. These are very important observations because as we shall see in chapter 16, this phenomenon appears to play a vital role in the development of not only microscopic colitis, but also in all inflammatory bowel diseases and possibly all autoimmune issues.

Where reference 20 is:

20. Baroni, E., Biffi, M., Benigni, F., Monno, A., Carlucci, D., Carmeliet, G., . . . D’Ambrosio, D. (2006). VDR-dependent regulation of mast cell maturation mediated by 1,25-dihydroxyvitamin D3. Journal of Leukocyte Biology, 81(1), 250–262. Advance online publication. doi:10.1189/jlb.0506322

If I recall correctly though, your vitamin D result from your last test was not too shabby (unless I'm thinking of someone else). But maybe it was low when the problem originally developed.

We may have to put our thinking caps on and figure out new ways to treat ME.

Love,
Tex

[wmonique2]

Tex,

What's an "adequate" level of vit D? How does one finds out what level one has? I guess I have to be tested for that...Is it something that is found in complete blood count or is it something that they have to test separately? I take 12,000 IU a day. How much more can one take? (you mentioned it once but I forgot).

Thanks,

Monique

[Kari]

Thank you for your quick response Mary Beth. I'm grateful that I don't have the skin issues you and others here are dealing with. My only problems are D. (no longer the garden hose WD variety :)) and fatigue. I have been eating an extremely limited diet for 3 years now, but the D. persists. Fortunately my BM's are only 1-3 times a day.

Since there is conflicting information on which foods should be avoided on a low histamine diet (as Monique pointed out), I'm thinking of doing MRT again to see what has changed. It was very helpful the first time around; eliminating all yellows, reds and high greens, actually produced normans for a while. Since ME is a relatively new diagnosis and not on the radar of most GI's, I bet it is severely under diagnosed, and I have no doubt that many here have it.

Tex - we did discuss my vitamin D level recently - it was 35 last year when I checked it. I get a lot of sun exposure here in Colorado, which helps to keep it within normal, although on the low side. I have tried taking supplements, both pills and liquid, but as usual I start reacting. My system seems to categorically reject anything in pill form, which is very frustrating. I'm low on B12 and have convinced my PCP to give me shots to circumvent the GI tract, so I will make an appoint. to get that done - hopefully it will help with my energy level. My intuition tells me that ME came before LC, so I think you're right about that.

Monique - I will update after meeting with the GI and getting confirmation of the test results. He is actually quite open minded and listened carefully to all I had to say - he agreed about the importance of diet in managing/resolving MC symptoms. He took quite an interest in Tex's book, which I brought along. I'll be curious to hear what he has to say about managing ME. I'm guessing he will prescribe Gastrocrom, or something similar, along with a low histamine diet.

Love,
Kari

[tex]

What's an "adequate" level of vit D? How does one finds out what level one has? I guess I have to be tested for that...Is it something that is found in complete blood count or is it something that they have to test separately? I take 12,000 IU a day. How much more can one take? (you mentioned it once but I forgot).

You're taking a lot of vitamin D, so it would probably be a good idea to have your level checked, if you have been taking that amount for more than a couple of months. Everyone probably has a different limit, but in general taking 20,000 IU or more on a long-term basis may eventually lead to a toxic level.

It's a separate test (not part of a CBC), so you will have to request it. And when you do, be sure to specifically ask for the 25(OH)D test (pronounced 25 hydroxy-D test). Otherwise, the doctor will virtually always order a 1,25(OH)₂D test, which is worthless for determining whether or not you are getting enough vitamin D.

I try to keep my level over 50 ng/ml, and below 100 ng/ml. I shoot for 80–90 mg/ml, but since part of my terminal ileum is missing, I seem to have trouble absorbing a lot of things, and since my surgery, I haven't been able to reach that goal. My last test showed 55 ng/ml.

If your doctor isn't willing to order the test, or forgets to order it (as mine usually does), you can order a test kit at the first link below, and draw the sample yourself (it only requires a few drops of blood). That's what I did the last time, and I'll probably continue to go that route, because that way I can order a test whenever I want, not when the doctor feels like getting around to it. And unlike ordering a test through your doctor, this test doesn't require a pint of blood in order to do the test. The second link is to a video that shows how to collect a sample. It's pretty simple, and it worked like a charm for me.

https://vitamindcouncil.zrtlab.com/

http://vimeo.com/47901769

You're most welcome,
Tex

[wmonique2]

Tex,

Thank you so much for that very thorough answer. Exactly what I needed to know. I will order the test myself since I'd have to give him (my doc) a long explanation as to why I need it ...

Love,

Monique

[tex]

Monique,

The good part about that test lab is that they have an agreement with the Vitamin D Council, so that they include a questionnaire which helps with vitamin D research, and part of the money from the test also goes to support vitamin D research.

I think I'll order another test myself in another month or so, to see where my level is, before winter arrives.

Love,
Tex

[Kari]

Great info about vitamin D Tex - thanks. I had to laugh when I saw your comment about your doc "forgetting" to check your D level. When I had my annual check-up a couple of months ago, I specifically asked for it, but they "forgot" . Therefore, I only have the results from last year :(. I may ask them to check it when I go for my B12 shot, or opt to do my own.

Love,
Kari

[JFR]

I order the test myself. I usually prefer to avoid my doctor when possible even though she's better than most.

[tex]

I had to laugh when I saw your comment about your doc "forgetting" to check your D level. When I had my annual check-up a couple of months ago, I specifically asked for it, but they "forgot" .

Yep, most doctors worship the worthless cholesterol tests as if they were pagans and the cholesterol test results were some kind of stone idol, but they don't see any point in checking something as important as our vitamin D level. If it weren't so pathetic, (and so potentially dangerous for our general long-term health) it would be comical.

Love,
Tex

[humbird753]

Hi Kari,
I am sorry for the news you got on ME; however, by following the new diet for this, you may finally be able to reach remission with this newfound knowledge. Reading the results you got can make all of us wonder whether we too did not get a full diagnosis with our colonoscopies. Mine was taken in June, 2010, and I'm sure they didn't look any further than the elevated lymphocytes.
Please keep us posted on what your GI has to say.

And, Tex - thank you for the information on how we can have our own D level checked.

Love,
Paula

[Kari]

Just got back from seeing the GI, and got it confirmed that I no longer have LC- YEAH!!! I had brought along a couple of articles on ME by Dr. Scot Lewey. When he saw them, he started to laugh, as he knows him from school. Anyhow, he is very open minded about everything I have to say, and willingly admits that he doesn't know too much about ME, as it was not part of his training.

He wrote me a script for Gastrocrom, as I suspected he would. He also said I should go back to antihistamines, and rotate them (Claritin, Zyrtec, Allegra, etc.) to have a lesser chance of developing a tolerance to any one of them. He suggested that I also add an H2 blocker, such as Zantac. Then he recommended a Nutritionist, and her information sheet states that she does L.E.A.P. (MRT)!!!

He told me not to worry too much about having D., unless I started having other, more disruptive symptoms (pain, bloating, multiple WD's, etc.). He likened the condition to "hay fever of the intestines", which sort of makes sense to me, and actually made me feel better :).

I brought along your book, Tex, and he said he would order it for the clinic.

So, all in all, good news. Now if I can only recover from the colonoscopy prep - sigh.....

Paula, and others who suspect mast cell issues - hope this report is encouraging and lets you relax a bit about the scarcity of Norman :).

Love,
Kari

[wmonique2]

Kari,

I am speechless! Stunned. VERY HAPPY for you. What a great doc that he'd buy Tex's book!

Dunno what to say except that those of us with mast cell issues are wishing for the same results. There is hope.

AWESOME, Kari.

Wishing you a speedy recovery from the colonoscopy.

Love,

Monique