Good News and Bad News

[Kari]

Terri and Jean - thank you for sharing your experiences with Elavil.

As you may know, I have been treating my MC with diet alone for 3 years now, and am so grateful that the LC has cleared up. I do use Imodium fairly often as it is so helpful in slowing down motility. Yesterday I had a pretty powerful aha moment :). I was driving to pick up my grandchildren from school when I noticed my stomach starting to churn a bit. Well, I knew I had to spend the next 45 minutes to an hour in the car without being able to get to a bathroom. Then came my moment as I realized that I no longer get that desperate, uncontrollable urge to go. So I relaxed, and waiting until I got back home to get to the bathroom was absolutely no big deal :).

This made me realize how I live in fear of an "emergency" when in reality I have healed enough that I should be able to let go of that seemingly ever present fear. As we know, that "fear response" places stress on the body, which then aggravates the condition further. I have also noticed that my lower abdominal muscles are always very tense, so now I consciously relax them whenever I remember. As for the Paleo diet, whenever I attempt it, I have the same experience as you Terri. I don't like meat, so I start to lose my appetite, and then lose weight, which I absolutely cannot afford to do. I don't think I'll ever be able to live without rice and potato products being part of my diet. This seems to be a psychological issue more than anything else. Jean - you are very fortunate that you enjoy meat :).

Love,
Kari

[JFR]

Kari,

To some degree I have learned to like meat. At this point in time I buy only ground lamb and ground pork (grass fed or pastured, not factory farmed) in pound packages. I divide it up into 1/4 pound patties and cook one at a time. I also buy wild caught cod in bulk, divide it up into quarter pound pieces and cook it with a little coconut oil and salt. I think a lot less about liking or not liking than I used to. If it's tolerable and advances my health rather than derails it, I eat it. I guess I really do eat to live. It is true that I do not actively dislike meat but I think it is my attitude towards food that has changed the most. Also, eating high carb foods tends to make me ravenously hungry. I guess you could say I am a carb addict, so eating grains, even if I hadn't tested positive to all of them, just derails my attempts to eat healthy. Same goes for sugar and potatoes and other high carb foods. I guess we all have to just figure out what works best for each of us, taking into account a lot of variables.

I know what you mean about just relaxing rather than tensing when strange sounds and sensations occur. I am still working on that. I tell myself that even though it sounds ominous,nothing bad will happen. That gets me through a lot when my inclination is to just go home or run to the nearest bathroom.

I hope that you are successful with the mast cell issues. I also eat a very low histamine diet and take a daily Allegra. The last time I started adding back foods that I realized later were high histamine was the last time things went south. My reaction to such foods is always almost immediate but there is also a quantity effect. I may be ok with a small amount of a high histamine food but adding too much back in leads to problems. I do not have any diagnosis since I just opted to try dietary measures rather than going to a doctor to figure things out. This was after a lifetime of intestinal trouble that never got anything but an ibs diagnosis along with bad advice from the occasional doctor I would consult about it. It could be that my problems are all mast cell related and that I don't have MC. At this point it doesn'tmatter to me since whatever is wrong with I seem to be able to treat it with diet and the help of this forum.

love,
Jean

[Kari]

Hi PP friends,

I don't post often any more, but I do stop by from time to time. I noticed that the topic of Mastocytic Enterocolitis came up recently, so thought I'd bump up this conversation from 4+ years ago.

Wishing healing to all of you.

Love,
Kari

[JFR]

It's strange reading an old post of mine. My attitude towards eating has remained pretty much the same. If it advances my health I eat it. If it is toxic to my health I avoid it. What has changed is that I no longer seem to have histamine issues. I remain very careful with my diet and all remains well.

Always nice to hear from you Kari.

Jean

[TM]

Thanks for reviving this thread Kari. I hadn’t seen it before and there’s a lot of helpful info. I’m still rereading other related posts here, as well checking referenced links, and other mast cell resources that I’ve stumbled upon recently. I still find it all confusing, but at least feel like I’m heading in the right direction.

Hope your LC has not recurred and that you’re keeping the ME in check. Any chance for an update?

[Kari]

Jean - so glad to hear you're doing well. I've come to believe that sticking with a careful diet is a life long endeavor in order to remain well.

Teri - it was after reading your thread on ME that I decided to bump this one up - glad you found it helpful. As far as an update on me, healing is very slow, but consistently moving in the right direction. Because all issues relating to colitis (with the exception of persistent soft stools) have cleared up, I decided not to add any meds, not even anti histamines. I hike quite often, and one of my symptoms used to be a constantly runny nose during exertion. This has cleared up, which I consider a good sign that the histamine issues are abating.

I was initially diagnosed with LC almost 2 decades ago, so it has been a long road. It took me 10 years to discover the diet connection, so a lot of damage had been done by then. Strangely, I have no idea what my stools looked like before LC, so the fact that they remain soft may be that they always were, or the fact that so much damage was done that more time is needed for healing. I can say that my BM's are definitely getting better as time marches on, and I stick with a very careful diet.

One more thing of note is that when I first found out I could heal with diet, I threw myself into the effort whole heartedly, and believe the stress I placed on myself to "perfect" my BM's hindered progress. After a couple of years of that, I came to accept that I was dealing with a life long condition and should learn to relax about it. I believe that "letting go" of the idea that I can "control and perfect" things through effort and will power alone has greatly helped in the healing process.

Hope this helps, but please feel free to ask any other questions you might have. I will do my 5 year colonoscopy later this year, and will post the results here.

Love,
Kari

[TM]

Thanks for your update Kari. Sounds like you’ve put in a lot of mileage on this long and winding road. Its very encouraging to hear that you’ve been able to keep both LC & ME in check w/o any meds. I do have questions but apologize for their length—I think I’m congenitally incapable of brevity.

I’m wondering whether your symptoms were mainly digestive, or whether you had other non-digestive symptoms besides a runny nose?

Lately I find myself relying increasingly on anti-histamines. Beginning in mid-October I’d tried to limit to one (or sometimes two daily)—usually generic Claritin or Zantac, and then in December stopped them entirely for two weeks. It wasn’t long before chronic scalp issues, itching everywhere, esophageal pain, headaches, eye grittiness, sneezing, congestion, LPR, insomnia, increasing anxiety, numbness and tingling all seemed to escalate dramatically. I also have a few auto-immune issues and other symptoms that may or may not be related to mast cells/histamine, like worsening electrolyte deficiencies, lifelong low RBC with slightly macrocytic cells, breast cancer in 2015, and joint and muscle pain and cramps. I’ve never had pollen allergies, but now can barely get through a meal (or even snack) before my nose starts running. I think I’ve become allergic to my houseplants and also sneeze repeatedly whenever walking through the soap or fragrance section in a store.

A few weeks after resuming 2 A/H daily and then adding Benadryl at bedtime, almost all symptoms began to decrease gradually. But its now about 2 months back on 2-3 A/H daily and while symptoms have continued to improve, most of them, particularly itching, sneezing and congestion—are still worse than they were in the fall.

Thankfully collagenous colitis however, seems still to be in remission—since early November. Generally just one solid BM daily (2 or 3 only if I’m particularly anxious about an upcoming appt or event). Virtually no cramping, gurgling etc., except for the 3 or 4 occasions that I deviated significantly from a low-histamine diet. I began that on 2/24/17—same time as my Enterolab based diet, which is still mostly huge amounts of turkey and coconut. I've gained almost 20 lbs since summer and have added a number of new veggies and 2 fruits, occasional corn tortillas, chips, hummus and rice crackers, and actually feel like I can eat anything now without problems—so long as it’s low histamine. But I still remain extremely cautious about additions.

Since my PCP hasn’t yet responded to my request for further testing or referral, all I know so far is that I have an elevated number of colon mast cells.
So what I’m wondering, is whether my assorted non-digestive symptoms make systemic mastocytosis or MCAS seem more likely than ME.

Kari, I realize that your ME diagnosis came as a surprise, and you may never have investigated these other issues, but thought I’d ask anyway, in the hope that if you haven’t, someone else may have.

As you suggest, I’ve been trying to relax and take it all in stride, sometimes more successfully than others. Although I’ve presented a long list of “issues,” I’ve been very fortunate in that most have been relatively mild—especially compared to many of the problems discussed here. Thanks again to everyone on this forum. With your help I’ve made incredible progress this past year.

Kari, thanks again. Wishing you the best on your upcoming colonoscopy.

Teri

[Kari]

Teri,

It's somewhat difficult to sort out which symptoms relate to LC and which to ME. However, now that I no longer have the markers for LC, I guess the left over symptoms relate to ME, which is basically soft stools and frequent sneezing. Other symptoms I have experienced over time are brain fog, lack of energy, stomach gurgling and discomfort, nausea, mild depression and anxiety, and excessive sleeping. Even though my stools are still soft, I no longer suffer from explosive WD, and am never worried about leaving the house like I used to be.

My current condition does not really interfere with my life. The fact that it's improving very gradually gives me the confidence to focus on more interesting things than what's in the toilet:), like yoga, meditation, hiking, skiing, etc. I'm retired, so I don't have a lot of stress in my life, except the stress I choose to place on myself, such as teaching yoga (got my teacher certification after I retired). When I first started down the road of healing with diet, I lost 20 lbs. and became underweight. This was a great source of stress, since I felt weak and seemed incapable of gaining any of it back. However, I'm happy to report that over the last several months, I have finally managed to gain a few lbs., and they seem to be sticking - yeah!!!.

Having patience is a giant part of healing from this disease. I have come to believe that by persistently sticking with a healthy lifestyle with diet, exercise, meditation, minimizing stress, etc., the colitis gets "worn down". Being impatient only adds fuel to the fire, prolonging the healing process. Accepting and embracing the condition (as it's not something we've chosen) helps by decreasing the stress level. I also believe that the longer one has lived with untreated colitis, the more damage has been done, and the longer it takes to heal.

There is not a lot known about ME, so I understand your frustration with finding information. The reason I had myself tested is that Tex mentioned that it does not automatically get done during a colonoscopy, but has to be specifically requested.

Best of luck to you on your continuing journey toward reclaiming your health.

Love,
Kari

[TM]

Kari,

Thanks for your reply and encouragement. It’s great that you’ve finally been able to gain some weight. I think you’re right that healing time is determined largely by the amount of prior damage. Sounds like even without LC, its taken you a very long time to reach this level of healing, even though you’ve been “doing everything right.” I almost feel like I’ve gotten off too easily. It took about a year of struggling with the usual horrific MC symptoms for me to lose 20 lbs, but only about 6 months before I started feeling better and gaining it back.

Like you I’m retired, so for the most part my stress level is also a matter of choice. But I still always find myself trying to “catch up” and wonder how I ever had time for anything else before I retired.

I was amazed at my level of acceptance of the restrictive diet and being able to adhere to it for so long—actually embrace it—without deviation. Until October if I was going out, I wasn’t able to eat anything at all until I got home, so had to start out early enough to make it back before I was hungry. Now I’m no longer “housebound,” and can venture into town (I live way out in the sticks) for whole days at a time—currently deterred only by winter weather and fear of flu.

So it feels like my gut has healed significantly, if not entirely, but not so the other symptoms. That’s what I’m trying to get a handle on now, since I really don’t like taking all these antihistamines. Other than a few unsuccessful “experiments” my diet has been extremely low histamine for almost a year—but histamine symptoms seem worse. So I’m trying to remain patient and calm, but hope research will eventually provide additional “natural” alternatives for dealing with mast cells. In the meantime I’m trying to identify the type of mast cell issues I’m experiencing, hoping that might lead to a more targeted approach.

Kudos on your Yoga certificate. I practiced daily for a few decades, but have drifted away, although I still meditate. Trying to pick up where I left off—especially since my workout routine has also deteriorated sharply recently. Since I live out in the woods though, I’m lucky to be able to be outdoors a lot and do a lot of walking, gardening etc.

Thanks again for your encouragement and for sharing details of your journey, and best of luck as you “ease on down the road.”

Teri