Posted by susan C on March 26, 2008, at 11:20:47
This is what I say to people who haven't seen me in a while and they are surprised at how much I have changed.
In the last 16 months, my health has taken a 180 degree turn for the good. A year ago I was resigned to the reality that for the rest of my life I would have only 5 hours to function in each day. I had tried everything. The final suggestion I had from my main doctor (Psychiatrist) was to develop coping skills. We had, over the previous six years, successfully controlled mania and severe depression thorough medication-Depakote and Verapamil(yes, I had suicidal thoughts - though no plans and no action). What remained was cognative slowing & debilitating fatigue. I would wake at 7:30 after 10 hours of sleep, function well until 1 or 2. By two o'clock it was all I could do to get to bed and sleep (I could set a clock by my reaction). I slept for an hour, sometimes two or three. The rest of the day, until bed at 9, I was in a fog. But, I thought, "At least I am not depressed!"
In late summer, the doc suggested I investigate a particular diet, the ketogenic diet. He reasoned that since I responded well to anti seizure drugs-- this diet, developed has been found extremely successful with children who have non-responsive seizures. Two years on this diet (very strict -
no carbohydrates, like the Atkins diet, though more so) many of the children remained seizure free for the rest of their lives. I do not
have seizures, but it was worth a try. Doc warned me he knew nothing about it, recommended I run it by my internist and get a very good
Over the next 3-4 months, I tried the Atkins diet, (no change) I talked to my internist and found a nutritionist. They both agreed:
Ketogenic diet was only for very severe seizure situations and the Atkins diet was terribly hard on the body. The nutritionist and the doc finally talked several times. Doc called me and said, "this fellow is sharp, I'd leave it in his hands."
So, I signed on. I committed to six months.
Within twelve days of a "detoxification and elimination diet", I deviated a bit. Within 24 hours, I was stumbling down the hall to the
bed..."I remember this...I haven't felt like this for about a week." The fatigue was back.
Before I started the process, I thought, "yeah, RIGHT!, all my symptoms are caused by food. RIGHT!
After that experience of creating the symptom by eating the food, I said, RIGHT! :o) FOOD DOES CAUSE ALL MY PROBLEMS!
What followed was six months of careful reintroduction of food, one by one and monitoring the effect, if any.
(BTW, when I started this, I looked at DH and said, I am NOT doing this by myself, you are doing it too. It turns out he is in worse
shape than I am, though I am disabled, he functions quite well....)
We now have a list of 10 foods we do not eat.
gluten, dairy, soy, eggs, corn, yeast, pork, beef, pecans and macadamia nuts.
I am off all medications,two strong meds for mental functioning - Depakote ER 1000mg and Verapamil ER 320mg, Prevacid for acid reflux, Rhinochort a sinus spray, ( I continue to do a saline rinse only), asthma meds are now "as needed", my lung function is the best it has ever been. I no longer use a CPAP machine - I just
took another sleep test, and have no sleep apnea.
Since December 2006, I have lost 20 lbs. We have not had a cold or been sick in any way since. Before we were sick with something every two months, year 'round.
What was going on? Why was I so ill? I had a "perfect storm" autoimmune reaction to foods I was eating every day. When I stopped eating those foods, literally, within 12 days, my body calmed down and started healing.
At one point, when I finally understood how my body was (or wasn't) working, I said, "All these years I have been trying to eat really well - whole foods, fresh food, organic, you name it...I might as well have been eating the dollar bills for the amount of nutrition I was getting!"
I will not know if I have Celiacs Disease, because, in order to get the "gold standard" medical test, I would need to start eating gluten
again. But I don't want to get sick. I know if I eat it my emotions will be in shambles. I will get depressed, irritable and irrational.
Similarly with corn. Each of the foods on the list have a specific and discrete reaction - in me. DH's are different. What we have fall into the categories of Allergies, Sensitivities and Intolerances. What the reactions are called, to me, is irrelevant. I know if I eat a particular food, I will get sick. Maybe not right away, but within the next 24-72 hours.
I have my life back. My moods are stable, I am not fatigued (I went from 5 hours a day to 15). And, best of all, I am happy.
I have never felt like this in my life! At one point, I looked at DH and said, "I don't know who I am any more. I walk down the street and
people smile at me. I think, 'why are they smiling at me??' I catch my reflection in a store window, and I am smiling!"
Thank you P-Bers for all your support, all the years. Contact through this board allowed me to meet others like myself and learn solid information. Thank you, thank you. You helped keep me alive.
Yours in health...