I have officially abandoned the diet-test. While on it I experienced marginal improvements, in the end I was expecting to see more after 1-1/2 years. As shallow as it may sound, I’ve decided to risk losing these improvements in favor of the increased quality of life of being able to eat traditional pizza, burritos and ice cream.
So, a take-away I have added to “Lorna’s Rules for Battling MS" is Rule #37, Rotate foods to avoid food sensitivities.
My attention has now veered to my digestion, more precisely the… er, finale of the process. Since I stopped relying on the diet to manage my bladder and started taking medication for it, the boat show that I was already experiencing and understood to be my norm, has gotten worse. For example, today marks day 4 without a boat.
I have been eating even more salad and fruit and taking fiber supplements three times a day and lately even added some herbs recommended by my acupuncturist. As I have recounted, it is typical for me to have a boat every couple of days. From time to time, in casual conversation, I became aware that others expect more frequency–like daily.
Might this be a factor in my M? A daily boat is my new project.
I've been feeling discouraged that my mobility still is bad and seems unaffected by this diet experiment even though my bladder urgency seems much improved. I was recounting this to my therapist and musing about whether the diet was actually helping or if the improvement I am seeing is just the natural fluctuation of the disease.
She pointed out that I had actually identified four big improvements since starting this experiment:
- Cognition. My fuzzy-brain feeling has all but vanished. I hesitate to say it is gone for good, but I can't remember the last time I experienced it.
- Energy. I can get up at 7:30, work a full day, watch TV at night, do a stint on the elliptical machine then get into bed at 10:00 and read for a bit before turning out the light. My energy levels are definitely better.
- Fatigue. Related to my energy level and my experience of fuzzy-brain but, as my doctor pointed out, one of the most common complaints of M.S., the multiple-system failure that is fatigue. I still notice it when I get overheated, but recovery seems to come quicker, usually within a day rather then lasting a week.
- Incontinence. The subsiding of bladder urgency was one of the first things I noticed and the incidence of "accidents" has gone way down too.
Also, I have adopted some great alternatives to things I don't eat and am back down to a comfortable weight.
We talked about the fact that it had been eight months so far and she asked me how I would feel if I stopped now and then a month later, for example, again started to notice declines in these improvements. Would I feel it was prudent to resume it at that point, even if it meant I had to wait another eight months to get back to where I am now?
No. It makes more sense to at least finish out the year.
I keep thinking I can "cheat" sometimes with my food sensitivities, like you sometimes do when you are following a diet to lose weight. But I had another reminder that one, the diet is helping, and two, I can't cheat. Sigh.
A few weeks ago I had a major bladder issue again, which I haven't had in months. I was discouraged because I thought the progress with my bladder was therefore not due to the diet, like I thought, but simply just my m.s. remitting and now relapsing according to the whims of the disease. And that all this restricting foods was for naught.
I talked to OH about it and had a little cry. Then suddenly I remembered that I had succumbed to the temptation of ice cream the night before. Ah-ha! Maybe that was why.
It was chocolate brownie ice cream, and of that, I'm sensitive to chocolate, sugar, cream and wheat (do brownies have wheat?). I continued to have bladder urgency for over a week after that, but it was worst that first day. And I'm back to having none now.
So the moral of the story is "Don't quit now!"
In an effort to find alternatives to what I can't eat, OH has been scrambling me duck eggs. It was originally conceived after our neighbor, The Pie Lady, brought some back from her family farm after a weekend visit. I seemed to tolerate them fine and it was so cozy to be able to have scrambled eggs from time to time.
Then he got duck eggs from a local Asian market. Last Sunday, after having them with some uncured bacon (also a nod to my food sensitivities), I became violently sick to my stomach (projectile vomiting, explosive diarrhea, full-on gastric distress). Hmmm, a new clue.
At that time, we had to consider both the pork and the eggs suspect. But OH had had both and experienced nothing unusual. A mystery!
Yesterday, a week later, OH and I again attempted just the eggs. And within four hours, I was again violently sick. And again, OH experienced nothing unusual.
So, for whatever reason, the duck eggs from the Asian market, at least this batch, don't agree with me. Obviously, it is not all duck eggs because those from the Pie Lady didn't bother me. And it isn't contamination because OH experienced nothing.
So if I decide to continue to investigate this, I will again have to try some from the Pie Lady, and if that does nothing, I will have to try a different batch from the Asian market. Or I could just avoid eggs altogether for the rest of my life. Hmmm…
On my way to acupuncture yesterday I stopped and had my food sensitivities rechecked. I am so happy to report that some of the things I've eliminated I'm no longer showing as sensitive to!
Some of the things I've really missed and can now eat again (in rotation every 4 days or so) are salt, Mozzarella cheese (on spelt pizza crust!!!), rice and corn, tuna and avocado. I am looking forward also to cottage and cream cheeses.
Still no wheat, eggs or chicken. Surprisingly no sweet potatoes, curry, turkey, and now canola oil! Safflower and olive oil are okay now.
I can have sole, black coffee and barley (in my coffee substitute) sparingly. So rotation, rotation, rotation.
My bladder urgency is mostly gone and others have commented that my energy seems up. It's hard to tell, day to day, when changes are so miniscule, so other peoples' comments are so appreciated. I wish I had drastic changes to report, but am cautiously optimistic that this experiment is useful.
I have not been able to go back and get my food sensitivities checked again. I still am not driving myself and OH continues to be sick: he is still recovering from surgery and most recently contracted a cold that has dragged on for weeks, resulting in nausea and fatigue. So I am just trying to pay attention to minute variations in my health after eating something 'new'.
As OH likes to point out when we are trying to figure out what to eat, I don't like vegetables and thus am very picky about the way they are prepared. So when I suggested baba ghanoush (pureed eggplant dip) and flat bread for guests, he was willing to make and try it. I was a little discouraged by how it tasted without salt (unfortunately that's a common reaction for me) but he said it tasted great.
However, later both he and another guest had major bowel distress. He attributed it to the chopped, raw garlic the recipe I found had called for. I didn't experience that, but did experience some bladder urgency which I hadn't had for awhile and awoke the next morning feeling weak and very fuzzy which I'm going to assume is my reaction to eggplant.
So I'm assuming eggplant is a "no".
I am still maintaining dietary restrictions from my food sensitivities. This has been really hard on OH, who cooks a lot of my meals, and a testament to how much he has been trying. And one thing that I've noticed is that my bladder situation has gotten much better.
My initial reaction, before being tested, was that coffee with its infamous diuretic properties was increasing my urgency to go. But having something warm in the a.m. was so comforting that I just tried to time having a cup more than an hour before I had to get in my car and commute into work.
After I was tested I learned that I shouldn't be drinking coffee, tea or cocoa at all, so I started trying coffee alternatives such as Teeccino®. I started to notice that the urgency was gone, but at the time I was wary about the benefits of the diet versus just normal remitting inherent to my disease.
But I gradually started drinking coffee again because OH would make a fresh pot in the a.m., which smelled so good, and it was just easier to pour a cup and head back to my computer working at home. To my delight, the urgency did not return and I began to take this to mean that avoiding something was helping.
The final proof was that I had some wheat inadvertently in some store-bought meatballs. The next day the urgency was back, so I examined the ingredients on the label. Sure enough: wheat.
Christmas has passed with not too much drama. It was nice, low-key and relaxing. I still have gifts to wrap and give to friends, but am able to do that leisurely (as is always my goal to do way ahead of the holiday. Ah, well: maybe next year).
Surprisingly, I managed to stay mostly on the diet this holiday. Our neighbors had us over for dinner Christmas Eve and we went to my parents' house for brunch Christmas Day. The biggest temptations were all the assorted cheese-engulfed hors d'oeuvres at dinner and the quiche and bacon at brunch.
Things I did succumb to:
- Salt (in prime rib, yummy stir-fry vegetables, and half a slice of bacon)
- 1 piece smoked salmon (salt again, too)
- crumbled bleu cheese and raspberries on the salad
- 1 bite of dark chocolate
- Coffee (but black and only in half-cups)
How I managed:
I avoided the hors d'oeuvres, drank red wine instead, and ate everything at dinner. At brunch I had spelt toast with fruit spread, mixed fresh fruit, and a mimosa.
It's been about a month, I do eat regularly so am not going hungry and still have lost some weight, but have not seen a big change in my health yet. I have, however, seen small changes and that's keeping me focused on the goal of this experiment.
I haven't mentioned it in awhile but I am still following my own, unique "diet," avoiding those foods to which I tested as "food sensitive."
A few of the things that I have been eating:
- Celery stalks with almond butter
- Spelt tortillas (from Trader Joe's)
- Pork loin
- Plain baked potatoes
- Quinoa 'pudding' (thanks, D.)
- Hot apple juice with cinnamon
- Rolled spelt with dried cranberries (instead of oatmeal in the a.m.)
- Laughing Cow cheese (the French "American cheese")
- Fresh tomatoes
- Steamed broccoli and mushrooms
- Raw carrots
I can't have salt (think any kind of broth) so soups are out, no legumes (lentils and hummus), no sugar, and no soy (tofu and edamame). And I can't have rice, so a lot of items for celiac disease (wheat allergy) sufferers are out.
I've been warned that it may be a long time before I see any improvement: "Symptoms often appear as the last stage of any disease's progression, so too, much healing might need to take place before symptoms finally disappear: the last to arrive and the last to leave…Nothing will happen overnight and improvement often comes in almost imperceptible steps." (Sawyer and Bachrach, p. 35)
I think I can commit to a year of this, and I'll get my food sensitivities retested in 3 ot 6 months so I may be able to add some things back. I've also got a list of additional foods I want tested as well.
It's definitely been a challenge, but it hasn't become unbearable yet.
It turns out that there are no 100 percent reliable tests for food sensitivities at this time. But continuing to pursue the theory that there is a link between what foods my immune system is sensitive to and my health, I went to see a woman recommended by my acupuncturist for food sensitivity testing using Meridian Stress Assessment (MSA).
There are various types of food reactions, including:
- Fixed allergy—will react to that substance always, even a very tiny exposure.
- Cumulative allergy—will only react to a specific food when I have ingested enough of it to exceed my allergy threshold for that specific food.
- Variable allergy—may react at certain times when eating a food, but tolerate it well on other occasions. For example, I might react to specific foods only when certain pollens are in the air or during a particular phase of my menstrual cycle.
An MSA tests my cells’ ability to conduct the electricity of various foods. The equipment measures how much electricity passes through my meridian pathway when the food’s electrical signature is applied at an acupuncture point. Then, after a food is avoided for a time and reintroduced, there may be no response if the sensitivity is cumulative or variable.
I tried to find out how a specific food’s electrical signature was identified in order to be input into the machine, but just kept coming back to “proprietary software.” So failing that, I read some of the research, based on double-blind studies, where MSA accuracy was compared with that of older, more established food allergy testing techniques. The MSA results were totally comparable to skin testing, food challenges and RAST (and related) tests.
OK, so it is good enough for my purpose: to identify the more recognizable food sensitivities, the “low-hanging fruit” and begin to cut them out of my diet.
The test showed that I am sensitive to the usual suspects like wheat, eggs, dairy, sugar and peanuts. But some of the surprises were sensitivity to rice, chicken, salt and olive oil, and no sensitivity to yeast and pork, for example. And now that I am home and reviewing the test results, I’m already compiling a list of additional things I want her to test for: alcohol, for one!