Mastocytosis Enterocolitis?

Robin.booboo · Post by **Robin.booboo** » Wed Nov 30, 2011 9:27 pm

Hi Gang,

I have been reading up more and it looks from what I am reading as though the fact that I have both immuneological and histological responses means I might have mastocytosis enterocolitis as well as the collagenous colitis. Am I interpreting this correctly? Tex, you said that most of us don't have the food allergies, but I have both food allergies and the MC. I've seen a couple mentions of lab results and testing for mast cells - is this what those were talking about? I am looking at Dr Lewey's Food Doc site and maybe I am reading more into this than I should? http://www.thefooddoc.com/mastocytosis_enterocolitis

I am really struggling with the jump in to going fully gluten free, even though I know I will probably have to. My difficulty is in the fact that as soon as I started taking the immodium, most of my symptoms cleared up, and it is sooooo hard to imagine that when you are not feeling bad, and eating food tastes good and satisfies you, that there is something wrong with eating the food. I know you have all been through this. If I was still having all my full symptoms then it would be much easier to wrap my head around. Since I feel pretty great lately, it is hard to believe I'm still actually sick. I get a kick in the behind if I mess up and eat too much in a day, so I guess I should realize I am still sick, but it is hard when I don't feel particularly sick!

[Edited to add additional whining: Its also so hard with what some of you have mentioned, too - I was brought up with the mantra that white bread like "Wonder" brand bread is bad, but whole wheat, mixed grain, rye, brown bread, etc are very healthy, especially home made. My Mom is an excellent cook and she always home baked all our family's bread, for Pete's sake! Hence, artisan pastas, gourmet pastries, and of course goodies like zuchinni muffins or bulgar salad are supposed to be not only yummy, but "clear consience" "whole foods" "healthy" yummies. I continue to be extremely frustrated by my last four years of being a veggie and how that felt so good, but is probably the very thing that drove me over the edge. That just makes me feel queasy when I think about it. Ok, finished with my extra rant now.]

Anyway, what I am thinking is that I want to do the Enterolab tests, the full panel, so I don't end up eliminating anything I don't have to from my diet, and I am wondering if they can do the mast cell test as well, and if that is the same thing I think it is, to test for the mastocytosis enterocolitis. Is the genetic marker test for celiac another, separate test? Is celiac sprue separate on top of that, or does that cover it? I want to talk to my kids about all this if they may get stuck with it too. I specifically asked my GI if this is genetic and he said "No" but everything I am reading, here and elsewhere says otherwise. Oh man... :(

Thanks guys,
Robin

Post by **tex** » Wed Nov 30, 2011 10:36 pm

Robin,

Many of us seem to have some degree of mast cell issues, but that doesn't mean that we have mastocytic enterocolitis. In order to have a diagnosis of ME, one has to have an elevated mast cell count, on biopsy sample evaluation, under a microscope, (more than 20 mast cells per 100 enterocytes).

Robin wrote:Anyway, what I am thinking is that I want to do the Enterolab tests, the full panel, so I don't end up eliminating anything I don't have to from my diet, and I am wondering if they can do the mast cell test as well, and if that is the same thing I think it is, to test for the mastocytosis enterocolitis.

No, as described above, ME would have to be diagnosed by a pathologist, from your biopsy samples, after staining the slides with a special stain to make the mast cells more easily visible.

Robin wrote:Is the genetic marker test for celiac another, separate test? Is celiac sprue separate on top of that, or does that cover it?

The gene test at Enterolab will tell you whether you have any celiac genes, or any non-celiac genes that predispose to non-celiac gluten-sensitivity. This is a DNA test - you take a DNA sample by rubbing a cotton swab on the inside of your cheek, and then you send the swab to the lab.

Your GI doc doesn't realize that MC is genetic, because he probably denies that food-sensitivities have anything to do with the disease. IOW, he's lost.

Regarding not feeling sick - many celiacs are asymptomatic, so presumably some of us with MC may well be asymptomatic, as well.

You're most welcome,
Tex

draperygoddess · Post by **draperygoddess** » Wed Nov 30, 2011 10:41 pm

Robin,

I'm sure Tex will chime in on this one--he is the answer man! I will tell you that ME is diagnosed by biopsy, and the pathologist must use a specific stain in order to make the mast cells visible. Typically this isn't done unless the GI specifically asks for it, but it's my understanding that the existing slides from your biopsy can be re-stained, if the doctor still has them.

My symptoms were well-controlled with Immodium for several years. Then one day I had D that I couldn't get stopped, even after taking the maximum dose. It really scared me--so much so that I got an appointment with a GI, who did a colonoscopy...the rest is history. All that to say, if you're still able to control your symptoms with Immodium, NOW is the time to figure out what's causing them, before they get any worse. I'm sure you've read the horror stories of some of the members here. I never want to end up there. And you may discover that going GF makes you feel better in ways you don't expect.

Okay, that's my two cents' worth. I'll let someone else take over now!

draperygoddess · Post by **draperygoddess** » Wed Nov 30, 2011 10:42 pm

Hey, Tex posted while I was typing! I knew he would explain it better than I can.

Lesley · Post by **Lesley** » Wed Nov 30, 2011 10:56 pm

Robin,
I resisted going gluten free, but even more to going rice free, dairy free, egg free AND corn free. Because products with rice and corn can replace gluten. There are lots of them. And if you can have eggs you can have lots of baked goods. And if you can have crackers, or bread and cheese you have dinner.

It's hard to give up foods you love. Initially I was not feeling as bad as I am now, and I was eating a lot more. All that happened was sensitivities got WORSE! And now I am feeling really, really rotten. It's truly not worth it. You need to quit eating the things that are bad for you in order to prevent more damage and a longer healing time.

Robin.booboo · Post by **Robin.booboo** » Wed Nov 30, 2011 11:09 pm

Hi Tex and DraperyGoddess,

Thank you both for your two cents!

Soooo... My question NOW is, do you guys think if I called my GI or the lab - would it be physically possible for them to obtain and add the extra "mast cell" stain to my biopsies that were already taken, and provide results? Or would that require brand new colonoscopy/biopsies? I don't think I can manage that colonoscopy prep again for at least a few months, it gave me the worst, raging migraine and I threw up so much, during the second half of the prep when I was already so dehydrated. I really, really don't want to have to do that again anytime soon.

Thanks,
Robin

Post by **tex** » Wed Nov 30, 2011 11:47 pm

Assuming that the biopsies were taken recently, you shouldn't have to undergo another colonoscopy - a pathologist should be able to re-stain the existing slides, and reexamine them for mast cells, if your doctor requests it.

Tex

Robin.booboo · Post by **Robin.booboo** » Wed Nov 30, 2011 11:53 pm

Lesley wrote:Robin,
I resisted going gluten free, but even more to going rice free, dairy free, egg free AND corn free. Because products with rice and corn can replace gluten. There are lots of them. And if you can have eggs you can have lots of baked goods. And if you can have crackers, or bread and cheese you have dinner.

It's hard to give up foods you love. Initially I was not feeling as bad as I am now, and I was eating a lot more. All that happened was sensitivities got WORSE! And now I am feeling really, really rotten. It's truly not worth it. You need to quit eating the things that are bad for you in order to prevent more damage and a longer healing time.

No doubt!

I told my Dad over the holiday, when we visited, that I am trying to teach myself to "not be stupid" and eat too much, because that now always consistently ends up in the big D. I still have the best results when I eat very small amounts, no matter what they consist of. Are we SURE it's gluten? I get pretty darned good results from eating very little food.

I guess I need to understand better how gluten is bad for us. It just seems so much against everything I have ever been told.

I am more than halfway there, from my logical side, but my environment and upbringing disagree. Oh good grief! I need to go back and re-read the reasons why gluten is so evil again - I have to keep reminding myself that it damages my colon, which I need to survive. Again, the difficulty in persuaiding myself comes when all is well (i.e. I have taken my immodium).

But then my brain keeps coming back in and saying, "what the heck are you complaining about - you feel fine now, without the constant diarrhea, so what are you whining about?"

I am afraid to stop the immodium because I know it will come back full force - so that is proof in itself. *sigh*

draperygoddess · Post by **draperygoddess** » Thu Dec 01, 2011 9:07 am

Robin,

It's easy to get lulled into thinking that gluten is "not that bad." I sometimes feel that way myself, because my reaction to gluten isn't as spectacular as some of my other intolerances. I have to remind myself that gluten is probably what got me here in the first place. There's a chance that I might get some of those other foods back someday once I've healed up--but not if I keep eating gluten. And honestly, the gluten has been the easiest for me to replace in my diet. I won't tell you I never miss it, but there are some really good substitute ingredients out there.

I know what you mean about that "healthy food" mentality. I could have sprained my wrist patting myself on the back for my "healthy" eating before MC. I was big into whole grains, fruits and veggies, yogurt for dessert, very little sugar. Now my diet is very different. The funny thing is, I don't have the cravings I had before. Food is not as big a deal all around. I tend not to overeat as much--when I'm full, I'm done. What I'm spending on GF foods I'm making up by NOT buying all the artificial sweetener and diet soda I used to get. I've given myself permission to have V-8 splash whenever I want, even though it's more expensive, because it's good for me, and I like it. (Caution--only certain flavors are GF!) And though I didn't have a weight problem before, I'm finding it much easier to keep my weight in check now. I did lose about 7 pounds in the beginning, and I weigh myself daily to make sure I'm maintaining, but it's not something I worry about. All that to say, it's a different definition of healthy, and it takes awhile to adjust, but you'll get there!

Zizzle · Post by **Zizzle** » Thu Dec 01, 2011 10:34 am

Robin,
Read this article by Dr. Hyman posted in another thread.

http://www.huffingtonpost.com/dr-mark-h ... 79089.html

sarkin · Post by **sarkin** » Thu Dec 01, 2011 11:04 am

Cynthia, I have that same experience - never had a significant weight problem, but now my weight and body composition is much better, and effortless to maintain. That's quite unexpected, at my age!

Robin, the fact you're finding it hard to 'stomach' this idea about gluten is telling you something else as well: gluten is highly addictive. No kidding - it lights up the same receptors in the brain that respond to opium. Many people have noticeable 'withdrawal' symptoms, which can really sabotage their efforts. (Fascinating, huh?)

If you think about it, they don't fortify wheat products with vitamins *because they are good sources of those vitamins* - they do so because grains are a pretty crummy source of nutrients. But they're a great source of cheap, filling, low-value calories. And that's before you factor in the anti-nutrient aspects of most grains, and the specific damage that the gliadin component of wheat/barley/rye gluten does, not only to celiac patients but to many others.

There have been efforts to create a drug to neutralize this effect, but it turns out that those who are "gluten sensitive" are made ill by other components of those grains, as well. Eating foods that don't try to kill me has really worked for me!

Robin.booboo · Post by **Robin.booboo** » Sat Dec 03, 2011 8:34 pm

Zizzle wrote:Robin,
Read this article by Dr. Hyman posted in another thread.

http://www.huffingtonpost.com/dr-mark-h ... 79089.html

That was a helpful article, thanks Zizzie!

Robin.booboo · Post by **Robin.booboo** » Sat Dec 03, 2011 8:38 pm

Sarkin,

I just had a bad couple of days the past two days, which makes it easier to swallow. I hate waking up in the middle of the night with D. Also it has been hurting when I lie on my left side. I guess it's inevitable.

Thanks,
Robin

Robin.booboo · Post by **Robin.booboo** » Sat Dec 03, 2011 8:40 pm

tex wrote:Assuming that the biopsies were taken recently, you shouldn't have to undergo another colonoscopy - a pathologist should be able to re-stain the existing slides, and reexamine them for mast cells, if your doctor requests it.

Tex

Thanks Tex! I will see if he will request that for me.

jme22 · Post by **jme22** » Sun Dec 04, 2011 9:37 am

Robin,

I was diagnosed with ME several years ago via biopsy, just as Tex described. My gastro happens to be well informed on the issue, so he requested the special staining based on my symptoms. Sure enough, it came back positive.

After the diagnosis I went up to Hopkins (not far from home) for a consult. The Hopkins' physician requested that I get the biopsy sample so it could be retested at Hopkins. I had to do the leg work to get the sample (they actually sent it to me) but I was then able to hand carry the sample to Hopkins for a retest. The retest showed the same findings, but it convinced the doctor at Hopkins that the test was performed correctly. (Often in question with mast cell staining.)

All of that is to say, Tex is absolutely correct that you should be able to get your biopsy sample for mast cell staining. Be sure to consult with your physician on sending the sample to a lab that knows what they are doing with the special staining.

Also, although I have posted this article previously you may have missed it, so I offer it once again. It was co-authored by my gastro on the role of mast cells in gastro illnesses. It's a great article to take to your physician to help lend understanding on the topic. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/

Hope you get some answers soon!

Julie

P. S. Gluten free gets easier the longer you do it. I really don't miss it now. I miss the convenience (quick stop at Subway for instance) of being able to eat gluten, but that's about it. Hang in there!