Need advice

[JFR]

I am new here and have hesitated posting since I do not have a diagnosis of MC. My story of gastrointestinal problems is long spanning decades (I am 63) and I will spare you all the details. Mostly I have handled things on my own. A few years ago I decided that I really wanted some help figuring out what was wrong. I was planning my life around my intestinal track. I relied on imodium to get me through stuff but was finding myself becoming more and more of a hermit. I spent about 2 years seeing numerous specialists and having a bunch of tests. The final answer was we don't know but it has been going on so long it probably isn't going to kill you, so back to square one, handling stuff on my own. I was never tested for MC and I knew nothing about it until recently. What brings me here today is that over the past few weeks my symptoms have been the worst they ever have been with severe watery D necessitating trips to the bathroom every 15 to 30 minutes. It has never been this bad. I do not have cramping and don't feel like I have any kind of bug. Luckily large doses of imodium (8+ a day) seemed to have stopped it for the moment along with drastically restricting my diet right now to grassfed ground beef burgers and small amounts of coconut oil. I have been eating a low carb Paleo diet for almost 10 years, except for my homemade yogurt and hard cheese, and, except for a few lapses every now and again, I don't consume gluten or any grain, the only fruits I eat are a small amount of berries. I don't use sugar. Fiber makes things worse so I eat very few vegetables and take no fiber supplements. I seem to do best on a low residue diet. I did take a number of supplements but I have stopped all of them since things got worse except for the D3. It is free of suspect ingredients. I am also taking acidophilus, since stoping the yogurt, with no problematic ingredients.

So my 2 questions are:

1. Does it make any sense to pursue testing for MC if it can be treated with diet alone, something I am already doing? I tend to avoid drugs if at all possible.
2. Would it be worthwhile to be tested by Enterolab? I am happy to stay off gluten for the rest of my life but I miss my yogurt and eating eggs so I was thinking that testing for them might be useful although if I can marshall the discipline I might just be able to stick to a gf, df, ef, sf diet and rely on how my system respond.

Any help or suggestions you might have would be appreciated.

Jean

[tex]

1. Does it make any sense to pursue testing for MC if it can be treated with diet alone, something I am already doing? I tend to avoid drugs if at all possible.

Probably not, because at this point in time, most GI docs still argue that diet has nothing to do with MC, so all they can do is to write a prescription for a drug. Based on what you've said, the odds are extremely high that you do indeed have MC, so if you are willing to treat it by diet, a diagnosis is pretty much an academic matter.

There are a few gastroenterologists, here and there, however, who actually do know how to treat the disease. We have a list, (in case you happen to live close to any of them):

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14420

2. Would it be worthwhile to be tested by Enterolab? I am happy to stay off gluten for the rest of my life but I miss my yogurt and eating eggs so I was thinking that testing for them might be useful although if I can marshall the discipline I might just be able to stick to a gf, df, ef, sf diet and rely on how my system respond.

It might, if there's any question in your mind about whether or not you're actually sensitive to certain foods, (such as the yogurt and eggs), and there's certainly no point in doing without those options if you could actually be safely eating them.

If you're already avoiding all those foods, and still having symptoms, then either you're having cross-contamination problems, or the Panel C tests might be helpful. Some of us are extremely sensitive to certain foods, so it's very easy to be blindsided by something that we assume is safe. I had a round with cross-contamination back in December, and it took a while to get straightened out, and back on track, again.

It's also possible that your symptoms might be triggered by mast cells misbehaving, (mast cell activation syndrome, or MCAS). If mast cells are an issue for you, though, you should be having frequent problems with rash, itching, watery eyes, runny nose, etc., almost as if you are having a classic allergic reaction. It's possible to have one or all of the symptoms, but they are caused by mast cells in the intestines, releasing histamines, when they shouldn't, (because of certain food-sensitivities, connected with histamines).

Please be aware that many of us react adversely to probiotics.

Welcome aboard Jean, and please don't hesitate to ask anything.

Tex

[JFR]

1. Does it make any sense to pursue testing for MC if it can be treated with diet alone, something I am already doing? I tend to avoid drugs if at all possible.

Probably not, because at this point in time, most GI docs still argue that diet has nothing to do with MC, so all they can do is to write a prescription for a drug. Based on what you've said, the odds are extremely high that you do indeed have MC, so if you are willing to treat it by diet, a diagnosis is pretty much an academic matter.

Thanks Tex. That's what I was thinking, that the info wasn't going to do me any good and colonoscopies are no fun. My experience with my local GI doctor a few years ago was not a whole lot of fun so I will probably skip it for the time being. One of the doctors on the list is only about 1.5 hours away from me (the one in NH) so I'll store the information for later if it seems necessary.

I also probably will get the enterolab testing to see if casein and/or eggs is a problem for me. I also do have some allergic type symptoms, strange itchy rash stuff (not severe but present nonetheless) along with occasional itchy watery eyes. I thought it might be because of our early spring this year but maybe not. I'll check out MCAS. Does that necessitate avoiding histamine producing foods?

I really appreciate the presence of this board. I hesitated posting but it's good not to feel entirely alone with this.

Thanks,
Jean

[tex]

Jean,

Your allergy symptoms may indeed be due to spring pollen. The way to tell the difference, is to notice if they begin to get worse, roughly 15 or 20 minutes or so after eating. Unless the reaction is severe, it's easy to overlook the appearance of symptoms, (or an increase in severity), after eating, so sometimes we have to be aware of them, in order to notice them.

It's not easy to develop a safe menu, when mast cells are a problem, because in addition to the more common foods that we have to avoid, the list of foods that contain high amounts of histamine, and the foods that trigger mast cell degranulation, really complicate the issue. For some of us, mast cells are a minor problem, while for others, mast cells are a really serious matter. Here are some lists:

http://www.michiganallergy.com/food_and_histamine.shtml

http://www.urticaria.thunderworksinc.co ... foodsource

You're most welcome,

Tex

[JFR]

Tex,

In another thread you wrote that if a person reacts really quickly to a food after it is ingested that it's indicative of mast cell involvement. When things are going really badly for me that is what happens. I am in the bathroom within 15-20 minutes after eating when things are at their worst. The last time this happened I controlled it by eating only ground beef and homemade chicken soup. This time it was even worse because once the reaction got going it seemed to go on for hours and hours but a combo of the ground beef and lots more imodium than I ever had to take finally controlled it (so far). Now I see that lots of the other foods I was eating are high in histamine or histamine releasing. For the foreseeable future I am going to keep it really simple, eating only those foods that I am sure don't bother me. Luckily I am used to food restriction so I know I can do this. I remember mentioning this super fast reaction time to my pcp a few years ago as evidence that I reacted to a lot of foods. She said that it couldn't be a food reaction since the food didn't have time to even leave my stomach. That made sense to me at the time but it didn't explain why this only happened with some foods and not others. Now I have a possible explanation. Luckily my pcp is a nice person with a fairly open mind and quite willing to admit that western medicine doesn't have all the answers so she's a keeper and if I really figure this out she will probably be willing to be educated. She even suggested to me last week that I go see a naturopath. I decided my money was better spent on enterolabs. I have found over the years that I make my own best doctor in many if not most circumstances.

For the first time in a while I have some hope. My daughter is getting married in St Lucia in 4 weeks and will be living there most of the time with only the occasional trip back here to Vermont. I had to tell her that I couldn't come to the wedding because I can't possibly do the traveling. The thought of being on an airplane for that length of time and then having to figure out how to eat was too anxiety provoking and potentially very humiliating. Maybe if I figure this out I can at least go and visit her at a later date.

Thanks again,
Jean

[tex]

She said that it couldn't be a food reaction since the food didn't have time to even leave my stomach. That made sense to me at the time but it didn't explain why this only happened with some foods and not others. Now I have a possible explanation.

Yes, that's exactly why I would suspect a mast cell problem, but of course, it is indeed a food reaction. Your doctor is overlooking two facts - the fact that MC can affect any part of the GI tract, and the fact that the inflammation is actually generated by mast cells, releasing inflammation modulators, so theoretically, the reaction can begin as soon as the food is swallowed, (many of us seem to have esophageal and stomach involvement). In fact, the reaction can even begin in the mouth, (as evidenced by the fact that many of us have mouth sores in conjunction with reactions).

OK, actually, those aren't two scientifically-proven facts - they're part of my theory of how this disease develops, (but they're supported by sound, peer-reviewed, medical research reports, published in prestigious medical journals.

I have found over the years that I make my own best doctor in many if not most circumstances.

Unfortunately, with this disease, that's probably true for most of us.

For the first time in a while I have some hope. My daughter is getting married in St Lucia in 4 weeks and will be living there most of the time with only the occasional trip back here to Vermont. I had to tell her that I couldn't come to the wedding because I can't possibly do the traveling. The thought of being on an airplane for that length of time and then having to figure out how to eat was too anxiety provoking and potentially very humiliating. Maybe if I figure this out I can at least go and visit her at a later date.

It can be done - but it can be very trying, and very tiring. We have a few members who have done that, (and there is even a forum here devoted to such travel tips), Airlines, (unlike cruise ship lines), offer very poor service for clients with diet restrictions, and about all they can offer that is GF, are salads, (which, aren't tolerable, for most of us, because of the fiber), and fruit, (which isn't safe for most of us, because of the citric acid, fiber, and fructose). That means that we have to carry our own food, (which isn't near as easy as it could be, due to all the regulations). Here is a link to a collection of some of those posts, if you'd like to read how others have dealt with similar situations:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=62

Tex