A new round with an elimination diet to check my food sensitivities
Shawna Barnes - What’s the first thing that comes to mind when someone tells you they’re “doing the carnivore diet”?
If you’re like my husband, who works in the fitness world, it might just be an eye roll. If you’re a vegan or vegetarian, it might be disgust.
What if I told you that I’m doing the carnivore diet as an alternative elimination diet, similar to how people use the autoimmune protocol (AIP) diet to identify foods that cause flares of their autoimmune disease? Does that change your response? I’m hoping it tickles your curiosity.
Several years ago when I was diagnosed with myasthenia gravis (MG), I tried the AIP diet in hopes of managing my symptoms and “curing” this disease. It was restrictive as hell, and I was always hungry. But I was able to identify a few foods that definitely exacerbated my symptoms.
I tried my hardest to stay on the modified diet, paying attention to the foods that I’d learned cause flares for me. I discovered that soy gave me a headache, for example. After about a year of no soy, I went back to eating my favorite takeout food: Chinese.
How this food survey is going
Last month I decided it was time to try an elimination diet once again to identify what I was eating that was still causing my bloating and joint pain. These aren’t necessarily symptoms of my MG, but they definitely affect quality of life. Based on research and discussions with my husband, I opted to try the carnivore diet as my elimination diet of choice.
For the past month, I’ve been eating more fish, chicken, pork, beef, and some fruit. I’m following what’s called a “dirty” or plant-based carnivore approach. I know certain foods, including watermelon, don’t affect me. Since it’s one of my favorite fruits, I didn’t cut that out.
I kept eating this way for two weeks before starting to add things back. I need sauces to help move food down my throat, so I tried a barbecue sauce we always use. The next day I woke up with a headache. I looked at the ingredients a little more closely and saw it was made with soy. Well, all right, then. Soy definitely remains a food that my body doesn’t like.
A few days later I tried some of my son’s homemade bread with supper. I woke up with the joints in my hands hurting. I waited a few days and tried another piece. Hands hurt again. Looks like I have a wheat sensitivity.
Next on the food add-back list was oatmeal. And not prepackaged oatmeal because guess what? It’s made with soy. Old-fashioned oats for breakfast, please. No noticeable reaction. Wahoo!
My home health aide made me a spread with Greek yogurt. Within 20 minutes I had a cough because my increased phlegm was going down my trachea (windpipe) and not my esophagus (throat or food pipe). I stopped consuming dairy and began drinking water to help thin the phlegm. Twenty minutes later, the coughing stopped.
I tested this dairy theory a few days later by adding some hard cheese to my meal. Coughing ensued. No cheese. I’ll be exploring if I have a lactose or whey sensitivity later, but it’s safe to say that I’ll be avoiding dairy going forward.
Holistic and natural treatments, such as monitoring the foods I eat, aren’t going to cure my MG. What they will do is help me identify foods that don’t agree with my body, so I can avoid them and reduce my inflammation triggers. The less my body has to work at fighting things it doesn’t like, the more the MG plays nice and seems to respond better to treatment.
So yes, I’m on the carnivore diet, but not because it’s the cool thing to do or the current fad. It’s in hopes of finding the food sensitivities that trigger inflammation and eliminating them while being able to maintain this way of eating for the long haul. - Source: https://myastheniagravisnews.com
Why I need a nap: What living with MG fatigue is really like
Mark Harrington - For the past three weeks, my struggles with fatigue have greatly affected my life. I think others who, like me, have been diagnosed with myasthenia gravis (MG), as well as those who care for them, understand this experience. One minute life is rolling along and everything seems normal, then — bang! — fatigue instantly becomes overwhelming and all I want to do is sleep.
In my case, fatigue causes an emotional struggle as well. A Myasthenia Gravis News article titled “Energy drain: Coping with myasthenia gravis fatigue” notes that fatigue in MG “is more than simply feeling tired. It’s a deep-seated lack of energy that is physical as well as mental and makes it harder to meaningfully participate in day-to-day life.”
The article also quotes my own characterization of MG fatigue, which I described as “total and complete.” I added that “with ordinary fatigue, one knows that going to bed early, sleeping a little late, these will drive away the fatigue. When I’m experiencing MG fatigue, I don’t even think about it ending. I just want to sleep.”
The give and take
The need and desire to sleep drives away other considerations. I’m unable to care about things like credit card payment due dates or weddings and graduations. I know that as a reasonable adult I ought to attend those things, but overwhelming fatigue draws me back to bed, where sleep comes instantly. It feels so peaceful.
Sometimes I’ll sleep only briefly. I’ll get up, eat something, and sit down at my computer or grab a book. I’m relieved to be back among the living. But hours later, I’ll wake up with a sore neck because I’d fallen asleep while sitting up.
Then there are the disorienting days when I’ll wake up refreshed and relieved that the fatigue has passed. My alarm clock says it’s 6:45 a.m. Finally, I’ll have a full day to accomplish the tasks I’ve put on hold. But then I’ll look out the window and see the evening sun. Confused, I’ll ask Alexa what time it is. “It’s 6:45 p.m.” Another day of failing to accomplish anything.
On those days, I feel like Rip Van Winkle. I think of the time I wasted while sleeping and grow angry. Yet I don’t want to bother my loved ones with my emotions, as most of them are currently traveling. I used to plan on taking those kinds of trips and having similar experiences, too.
One day, as I made my way to the kitchen, I was overcome by a weird sensation. I felt as if I were on the edge of a canyon looking down. I was frightened and shaky. Thoughts ran through my head like will I ever be able to travel again? Has my world irrevocably shrunken to just home, sweet home? Will I ever journey farther than my front door? Has the pool permanently replaced the Pacific?
These questions continue to plague me now that the fatigue has passed and my “normal” life has returned. I don’t know if I’ll ever find the answers I’m looking for, but I’m certain about one thing: The fatigue will return. It’ll come unexpectedly and upend my world once again. The struggle will only end when, as the old church hymn goes, “the roll is called up yonder.”
One positive in all of this is that I won’t allow the fatigue to prevent me from getting the best out of the days when I’m running on all cylinders. In the poem “Andrea del Sarto,” Robert Browning writes that “less is more.” Ludwig Mies van der Rohe applied this idea to his designs and created architectural masterpieces.
Van der Rohe’s works can inspire those of us who live with rare diseases. Our lives may be shortened. The luxury of time may never be ours. Even so, we can make our lives into masterpieces.
I need to think further about fatigue and MG. Right now, I need a nap. - Source: https://myastheniagravisnews.com
If you’re like my husband, who works in the fitness world, it might just be an eye roll. If you’re a vegan or vegetarian, it might be disgust.
What if I told you that I’m doing the carnivore diet as an alternative elimination diet, similar to how people use the autoimmune protocol (AIP) diet to identify foods that cause flares of their autoimmune disease? Does that change your response? I’m hoping it tickles your curiosity.
Several years ago when I was diagnosed with myasthenia gravis (MG), I tried the AIP diet in hopes of managing my symptoms and “curing” this disease. It was restrictive as hell, and I was always hungry. But I was able to identify a few foods that definitely exacerbated my symptoms.
I tried my hardest to stay on the modified diet, paying attention to the foods that I’d learned cause flares for me. I discovered that soy gave me a headache, for example. After about a year of no soy, I went back to eating my favorite takeout food: Chinese.
How this food survey is going
Last month I decided it was time to try an elimination diet once again to identify what I was eating that was still causing my bloating and joint pain. These aren’t necessarily symptoms of my MG, but they definitely affect quality of life. Based on research and discussions with my husband, I opted to try the carnivore diet as my elimination diet of choice.
For the past month, I’ve been eating more fish, chicken, pork, beef, and some fruit. I’m following what’s called a “dirty” or plant-based carnivore approach. I know certain foods, including watermelon, don’t affect me. Since it’s one of my favorite fruits, I didn’t cut that out.
I kept eating this way for two weeks before starting to add things back. I need sauces to help move food down my throat, so I tried a barbecue sauce we always use. The next day I woke up with a headache. I looked at the ingredients a little more closely and saw it was made with soy. Well, all right, then. Soy definitely remains a food that my body doesn’t like.
A few days later I tried some of my son’s homemade bread with supper. I woke up with the joints in my hands hurting. I waited a few days and tried another piece. Hands hurt again. Looks like I have a wheat sensitivity.
Next on the food add-back list was oatmeal. And not prepackaged oatmeal because guess what? It’s made with soy. Old-fashioned oats for breakfast, please. No noticeable reaction. Wahoo!
My home health aide made me a spread with Greek yogurt. Within 20 minutes I had a cough because my increased phlegm was going down my trachea (windpipe) and not my esophagus (throat or food pipe). I stopped consuming dairy and began drinking water to help thin the phlegm. Twenty minutes later, the coughing stopped.
I tested this dairy theory a few days later by adding some hard cheese to my meal. Coughing ensued. No cheese. I’ll be exploring if I have a lactose or whey sensitivity later, but it’s safe to say that I’ll be avoiding dairy going forward.
Holistic and natural treatments, such as monitoring the foods I eat, aren’t going to cure my MG. What they will do is help me identify foods that don’t agree with my body, so I can avoid them and reduce my inflammation triggers. The less my body has to work at fighting things it doesn’t like, the more the MG plays nice and seems to respond better to treatment.
So yes, I’m on the carnivore diet, but not because it’s the cool thing to do or the current fad. It’s in hopes of finding the food sensitivities that trigger inflammation and eliminating them while being able to maintain this way of eating for the long haul. - Source: https://myastheniagravisnews.com
Why I need a nap: What living with MG fatigue is really like
Mark Harrington - For the past three weeks, my struggles with fatigue have greatly affected my life. I think others who, like me, have been diagnosed with myasthenia gravis (MG), as well as those who care for them, understand this experience. One minute life is rolling along and everything seems normal, then — bang! — fatigue instantly becomes overwhelming and all I want to do is sleep.
In my case, fatigue causes an emotional struggle as well. A Myasthenia Gravis News article titled “Energy drain: Coping with myasthenia gravis fatigue” notes that fatigue in MG “is more than simply feeling tired. It’s a deep-seated lack of energy that is physical as well as mental and makes it harder to meaningfully participate in day-to-day life.”
The article also quotes my own characterization of MG fatigue, which I described as “total and complete.” I added that “with ordinary fatigue, one knows that going to bed early, sleeping a little late, these will drive away the fatigue. When I’m experiencing MG fatigue, I don’t even think about it ending. I just want to sleep.”
The give and take
The need and desire to sleep drives away other considerations. I’m unable to care about things like credit card payment due dates or weddings and graduations. I know that as a reasonable adult I ought to attend those things, but overwhelming fatigue draws me back to bed, where sleep comes instantly. It feels so peaceful.
Sometimes I’ll sleep only briefly. I’ll get up, eat something, and sit down at my computer or grab a book. I’m relieved to be back among the living. But hours later, I’ll wake up with a sore neck because I’d fallen asleep while sitting up.
Then there are the disorienting days when I’ll wake up refreshed and relieved that the fatigue has passed. My alarm clock says it’s 6:45 a.m. Finally, I’ll have a full day to accomplish the tasks I’ve put on hold. But then I’ll look out the window and see the evening sun. Confused, I’ll ask Alexa what time it is. “It’s 6:45 p.m.” Another day of failing to accomplish anything.
On those days, I feel like Rip Van Winkle. I think of the time I wasted while sleeping and grow angry. Yet I don’t want to bother my loved ones with my emotions, as most of them are currently traveling. I used to plan on taking those kinds of trips and having similar experiences, too.
One day, as I made my way to the kitchen, I was overcome by a weird sensation. I felt as if I were on the edge of a canyon looking down. I was frightened and shaky. Thoughts ran through my head like will I ever be able to travel again? Has my world irrevocably shrunken to just home, sweet home? Will I ever journey farther than my front door? Has the pool permanently replaced the Pacific?
These questions continue to plague me now that the fatigue has passed and my “normal” life has returned. I don’t know if I’ll ever find the answers I’m looking for, but I’m certain about one thing: The fatigue will return. It’ll come unexpectedly and upend my world once again. The struggle will only end when, as the old church hymn goes, “the roll is called up yonder.”
One positive in all of this is that I won’t allow the fatigue to prevent me from getting the best out of the days when I’m running on all cylinders. In the poem “Andrea del Sarto,” Robert Browning writes that “less is more.” Ludwig Mies van der Rohe applied this idea to his designs and created architectural masterpieces.
Van der Rohe’s works can inspire those of us who live with rare diseases. Our lives may be shortened. The luxury of time may never be ours. Even so, we can make our lives into masterpieces.
I need to think further about fatigue and MG. Right now, I need a nap. - Source: https://myastheniagravisnews.com
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