Last week was basically the "week from Hell". I hate to start out a post on such a sour note, but I have to tell you the truth. I promise, it gets a little better.
I visited my neurologist for a follow-up appointment on Monday. I saw the P.A. (I never get to actually see the doctor), prepared with information on Celiac Disease and Small Fiber Neuropathy and the connection between the two. I handed the P.A. the folder, he scanned it and handed it back. When I told him he could keep it, he said, "Well, I can look that stuff up on the computer later". Then he politely told me to keep taking my meds and come back in three months.
On Wednesday, I met with the P.A. at my gastroenterologist's office (the person who diagnosed my celiac disease three years ago) for my annual check-up. I filled her in on my issues and before I could even finish, she stopped me cold with "Nope, the problems you are having are in no way related to your celiac disease as long as you are following your gluten-free diet". She told me to "stay off of the internet and stay on my gf diet". At that point, I just gave up trying. I felt totally defeated.
Obviously, it's all in my head.
On Friday, I had an appointment with an Integrative Nutritionist. I figured that I had pretty much exhausted all other avenues, so I decided to take a more holistic approach. Her office is located inside the Spa at the Roosevelt Baths in Saratoga Springs, NY. As I walked into the lobby, I couldn't help but relax. Calm music was playing, an indoor waterfall was trickling and a fireplace was welcoming. People were sitting around in padded lounge chairs in white robes and flip flops, waiting for their massages and mineral baths. I poured myself a cup of tea and waited. I couldn't help but wonder why doctor's offices weren't like this. Why do they have to be so cold and sterile?
Once in her office, we talked about the paperwork I had filled out and my symptoms and struggles. We talked about the brain-gut connection and how our gut controls a great deal of our bodies. I had been already researching about this before our meeting, so I was totally on board with what she was saying. She gave me instructions for an anti-inflammatory, anti-candida, elimination diet (which is also gluten-free). The idea behind the diet is to stop eating foods that contribute to inflammation in the intestine and replace it with foods that help the gut to heal. I won't lie, it's pretty strict. I've been on it for five days and I can tell you that it's not easy. I've had to give up red meat, dairy, soy, corn, white potatoes, tomatoes, sugar, chocolate, soda and pretty much everything I love. My diet has been consisting of chicken, turkey and fish, brown rice and quinoa, allowed vegetables and fruits, sweet potatoes, black beans and chic peas, nuts and nut butters (except peanuts), almond milk, flavored seltzer, 100% juices (no citrus), decaf coffee, green tea. I can use molasses, pure maple syrup, agave and stevia for sweeteners. There's also an added twist called "the egg challenge". I have to go without eggs for two weeks. At the end of the two weeks, I eat five yolks in one day to see if I have symptoms. If I do, then I can write-off egg yolks permanently. In a couple of days, I do the same with egg whites. From what I gather, this will be the way it goes as I add restricted foods back into my diet.
All of my go-to snacks are gone. No popcorn, no M&M's, no ice cream, no soda. I admit, I'm going through some pretty severe sugar withdrawal. I had to sprint through Target the other day in order to avoid the HUNDREDS of aisles of Easter candy. It's been especially tough the last couple of days. My daughter came down with the stomach flu and my stress level is making me crave sugar all the more.
The other component to the plan is dietary supplements. I have four big bottles on my kitchen counter which contain probiotics, digestive enzymes and omega 3's. I have to work up to the recommended dosages slowly to give my system a chance to adjust. The probiotics cause the most distress. I've had some pretty bad cramps and "bathroom issues" after taking them. I was told that this may happen. Apparently, as the bad bacteria are taken over by the good bacteria, a little intestinal war can break out. Completely normal, but more than a little uncomfortable. Right now, I'm taking it slow with the probiotics, only taking the minimum amount and only using them every-other day or so.
I haven't felt much change in my pain level yet. I know it's still early and I get really impatient. I have lost a couple of pounds, I'm guessing because sometimes I don't really know what to eat. The lack of sugar probably is helping as well. I've had moments where I just stand in the middle of the kitchen and stare at the fridge. I'm finding that I have to cook two meals at dinner, one for my family and one for me. I haven't tried to eat in a restaurant yet, that will be interesting. I thought going gluten-free was challenging!
How long I will need to stay on this plan is uncertain. I guess it depends on my symptoms. In the meantime, I'm still taking my nerve meds and trying to "stay off of the internet". (Not!)
I will keep you posted!
Thursday, April 14, 2011
Tuesday, March 8, 2011
Celiac Disease - More Than Just a Belly Ache
As some of you know, I've been dealing with some pretty nasty neurological pain issues in the last several months. I haven't posted too much about it because, well, I really didn't want to talk about it until I had a little more information about what was causing it.
I've hidden my pain from most everyone. It's not visible to the human eye. Most days I get out of bed and go about my daily routine as best I can and just "fight through it".
The pain I'm talking about now has a name. Small Fiber Peripheral Neuropathy. This diagnosis was just confirmed about a week ago after visiting two neurologists and having way too many blood tests, MRI's and neurological exams. Well, actually, the diagnosis was "some kind of neuropathy, but we don't know what's causing it, so here take these pills and come back in four weeks". I only came upon the actual name of the neuropathy after much internet research.
Small Fiber Peripheral Neuropathy affects the small nerve fibers in your skin. These fibers receive signals from the brain and control skin sensations such as temperature and pain. When you burn your finger on the stove or feel a cool breeze, it is your small nerve fibers that transmit that feeling to your brain to tell you that you hurt yourself or need to put on a sweater. Damage to the small fiber nerves disrupts this process and basically all Hell breaks loose.
For me, this means that I feel like I have a bad sunburn all over my body. Clothes hurt. I get chills, even though my skin feels hot. I have trouble sleeping. It affects every part of my day and everything I do.
The reason that I am writing this post today is that I want to get the word out there that the probable cause of my neuropathy is my Celiac Disease. I don't know why it took me so long to figure it out. I've been researching on the internet for months, trying to find an answer. Finally, this past weekend, I came upon it. It hit me like a ton of bricks.
I found this article on Celiac.com. It is entitled "Up to 16% of Patients with Small Fiber Neuropathy May Have Celiac Disease". Wow. I had considered that the cause of my issues were Celiac-related, but here it was, in black and white. Proof. It was written by The Neuropathy Association. The kicker....this article was written in 2003! Why do mainstream doctors not know about this???
"In addition, patients with celiac disease tended to have a type of neuropathy called small fiber neuropathy which often causes severe burning, stinging, and electric-shock like pains, but is often misdiagnosed as it is undetectable with routine tests used by neurologists to diagnose neuropathy. Approximately 16% of all patients with small fiber neuropathy were found to have celiac disease. Many of our patients were told that there was nothing physically wrong with them, and were advised to seek psychiatric care for presumed anxiety or depression, noted Dr. Norman Latov, Medical and Scientific Director of The Neuropathy Association, and senior author of the study. You too would be anxious and depressed if you were in constant pain, and no-one believed you or offered to help."
So, after finding that article, I dug a little deeper. I found this website Small Fiber Neuropathy.Net .
And this one: Center For Peripheral Neuropathy at University of Chicago.
Needless to say, I am printing out copies for every doctor I know. It makes me angry that I had symptoms of this since the time of my diagnosis in 2007. Not one doctor mentioned that Celiac Disease could be causing these symptoms. Since I had cervical disc issues at the time, the doctors just assumed that I was having nerve issues related to that. I just sat back and believed them. I had neck surgery. Instead of the pain going away, it just kept getting worse.
Now that I have a diagnosis and a cause, I have to find out what my treatment options are. For right now, it's LOTS of medications. I'm not happy with this option, but it's the only one available at this point. I also need to figure out why, since I am so careful about my gluten-free diet, that things are getting worse and not better. I'm sure it's going to take a lot more research, doctor visits and prayer to help me find a way to get through this.
So, I guess the moral of my story is, please, if something is not right with your body and you know something is off, don't just accept the first answer the doctor gives you. Don't just write it off. Investigate. Ask questions. You are your best advocate! It's taken me three years to learn this and it's been a painful lesson.
I've hidden my pain from most everyone. It's not visible to the human eye. Most days I get out of bed and go about my daily routine as best I can and just "fight through it".
The pain I'm talking about now has a name. Small Fiber Peripheral Neuropathy. This diagnosis was just confirmed about a week ago after visiting two neurologists and having way too many blood tests, MRI's and neurological exams. Well, actually, the diagnosis was "some kind of neuropathy, but we don't know what's causing it, so here take these pills and come back in four weeks". I only came upon the actual name of the neuropathy after much internet research.
Small Fiber Peripheral Neuropathy affects the small nerve fibers in your skin. These fibers receive signals from the brain and control skin sensations such as temperature and pain. When you burn your finger on the stove or feel a cool breeze, it is your small nerve fibers that transmit that feeling to your brain to tell you that you hurt yourself or need to put on a sweater. Damage to the small fiber nerves disrupts this process and basically all Hell breaks loose.
For me, this means that I feel like I have a bad sunburn all over my body. Clothes hurt. I get chills, even though my skin feels hot. I have trouble sleeping. It affects every part of my day and everything I do.
The reason that I am writing this post today is that I want to get the word out there that the probable cause of my neuropathy is my Celiac Disease. I don't know why it took me so long to figure it out. I've been researching on the internet for months, trying to find an answer. Finally, this past weekend, I came upon it. It hit me like a ton of bricks.
I found this article on Celiac.com. It is entitled "Up to 16% of Patients with Small Fiber Neuropathy May Have Celiac Disease". Wow. I had considered that the cause of my issues were Celiac-related, but here it was, in black and white. Proof. It was written by The Neuropathy Association. The kicker....this article was written in 2003! Why do mainstream doctors not know about this???
"In addition, patients with celiac disease tended to have a type of neuropathy called small fiber neuropathy which often causes severe burning, stinging, and electric-shock like pains, but is often misdiagnosed as it is undetectable with routine tests used by neurologists to diagnose neuropathy. Approximately 16% of all patients with small fiber neuropathy were found to have celiac disease. Many of our patients were told that there was nothing physically wrong with them, and were advised to seek psychiatric care for presumed anxiety or depression, noted Dr. Norman Latov, Medical and Scientific Director of The Neuropathy Association, and senior author of the study. You too would be anxious and depressed if you were in constant pain, and no-one believed you or offered to help."
So, after finding that article, I dug a little deeper. I found this website Small Fiber Neuropathy.Net .
And this one: Center For Peripheral Neuropathy at University of Chicago.
Needless to say, I am printing out copies for every doctor I know. It makes me angry that I had symptoms of this since the time of my diagnosis in 2007. Not one doctor mentioned that Celiac Disease could be causing these symptoms. Since I had cervical disc issues at the time, the doctors just assumed that I was having nerve issues related to that. I just sat back and believed them. I had neck surgery. Instead of the pain going away, it just kept getting worse.
Now that I have a diagnosis and a cause, I have to find out what my treatment options are. For right now, it's LOTS of medications. I'm not happy with this option, but it's the only one available at this point. I also need to figure out why, since I am so careful about my gluten-free diet, that things are getting worse and not better. I'm sure it's going to take a lot more research, doctor visits and prayer to help me find a way to get through this.
So, I guess the moral of my story is, please, if something is not right with your body and you know something is off, don't just accept the first answer the doctor gives you. Don't just write it off. Investigate. Ask questions. You are your best advocate! It's taken me three years to learn this and it's been a painful lesson.
Tuesday, January 25, 2011
"Senior Moments" and Comfort Food
Yesterday, I had a "Senior Moment". I was trying to update my post from a few days ago and somehow managed to delete the entire post. These kinds of things have been happening a lot to me lately. Like accidentally throwing away a pile of important medical paperwork and keeping a useless pile of "junk" paper that was supposed to go in the trash. I guess I'll just chalk it up to old age! Or, maybe add it to the list of weird, neurological "stuff" that's been going on lately.
I'm not going to try to re-write the post, but I do want to make sure I update you on the book I mentioned in it. I am currently reading "Super Nutrition for Women" by Ann Louise Gittleman PH.D. CNS. While I am fascinated by her recommendations for women not to follow the very popular "low fat, high carb" diets as we may be missing out on important fats and nutrients, I wanted to point out that this book is a little bit outdated when it comes to eating gluten-free. For example, Dr. Gittleman lists Original Sprouted Ezekiel 4:9 Bread as being gluten-free because it is "flourless" when it actually lists Organic Sprouted Wheat and Organic Malted Barley in the ingredients list. She even mentions that it is sweetened with barley malt. There are several other instances of this misinformation in the book. This book was written in 1991. We have come a long way in understanding gluten-free diets since then! So, while it is an interesting book to read and does have some valid points about nutrition and women, I do not recommend this book for anyone who needs to follow a gluten-free diet.
Now, on to something I've been wanting to post for a while now. I had to share that I made the most incredible mac n' cheese dish a few weeks ago! I was watching Rachael Ray's new show "Week In A Day". She made Spinach and Artichoke Baked Whole Grain Pasta. It looked really "Yum-O" and I knew it would be really easy to convert to gluten-free. (I know, this doesn't really fit in with my new "eating less carbs and more meat" approach, but what the heck?)
INGREDIENTS
2 (10-ounce) boxes frozen spinach (I only used one box)
Salt
1 pound whole wheat or whole grain penne' pasta or macaroni (any short cut pasta) (I used Schar Penne' Pasta)
2 tablespoons extra-virgin olive oil
1 large shallot, chopped
4 cloves garlic, finely chopped or grated
1 (10-ounce) box frozen artichoke hearts, defrosted, halved, pat dry (I couldn't find frozen, so I used canned)
1/2 cup dry white wine
4 tablespoons butter
3 slightly rounded tablespoons flour (I used sweet rice flour here)
2 cups milk
Freshly ground black pepper
Freshly grated nutmeg
5 ounces Gruyere cheese, shredded (about 1 1/2 cups)
1 cup shredded Parmigiano-Reggiano cheese
DIRECTIONS
Position the oven rack in center of the oven. Preheat the oven to 375 degrees F.
Defrost the spinach in the microwave. Drain, then dry the spinach out as much as possible by wringing it out in a clean kitchen towel.
Bring a saucepot of water to a boil. Add salt. Add the pasta and cook according to package directions for al dente.
Meanwhile, heat 2 tablespoons extra-virgin olive oil in a small skillet over medium to medium-high heat and add the shallots and garlic and cook 2 to 3 minutes. Add the artichokes and cook until they are lightly brown. Add the wine to deglaze the pan.
While the artichokes and pasta cook, in a saucepot over medium to medium-high heat, add the butter. When melted, whisk in the flour for 1 minute or so, then whisk in the milk and season with salt, pepper and a little nutmeg. Cook 5 to 6 minutes, or until thick enough to coat the back of a spoon, adjust the seasonings and stir in the Gruyere cheese. Combine the sauce with the spinach, pasta, and artichoke and stir until just combined. Transfer the mixture to a baking dish and cover with the remaining cheese. Cool and store for a make-ahead meal.
Bake on a baking sheet 45 minutes or until brown and bubbly on top.
The picture above is from the "Week in a Day" website. I wish I could show you a picture of my dish, but I seem to be having problems uploading pictures to Blogger today! Ugh. However, it came out amazing!!! The only issue I had with making this dish was that it dirties a LOT of dishes! Otherwise, everyone gobbled it right up...including the leftovers!
I'm not going to try to re-write the post, but I do want to make sure I update you on the book I mentioned in it. I am currently reading "Super Nutrition for Women" by Ann Louise Gittleman PH.D. CNS. While I am fascinated by her recommendations for women not to follow the very popular "low fat, high carb" diets as we may be missing out on important fats and nutrients, I wanted to point out that this book is a little bit outdated when it comes to eating gluten-free. For example, Dr. Gittleman lists Original Sprouted Ezekiel 4:9 Bread as being gluten-free because it is "flourless" when it actually lists Organic Sprouted Wheat and Organic Malted Barley in the ingredients list. She even mentions that it is sweetened with barley malt. There are several other instances of this misinformation in the book. This book was written in 1991. We have come a long way in understanding gluten-free diets since then! So, while it is an interesting book to read and does have some valid points about nutrition and women, I do not recommend this book for anyone who needs to follow a gluten-free diet.
Now, on to something I've been wanting to post for a while now. I had to share that I made the most incredible mac n' cheese dish a few weeks ago! I was watching Rachael Ray's new show "Week In A Day". She made Spinach and Artichoke Baked Whole Grain Pasta. It looked really "Yum-O" and I knew it would be really easy to convert to gluten-free. (I know, this doesn't really fit in with my new "eating less carbs and more meat" approach, but what the heck?)
INGREDIENTS
2 (10-ounce) boxes frozen spinach (I only used one box)
Salt
1 pound whole wheat or whole grain penne' pasta or macaroni (any short cut pasta) (I used Schar Penne' Pasta)
2 tablespoons extra-virgin olive oil
1 large shallot, chopped
4 cloves garlic, finely chopped or grated
1 (10-ounce) box frozen artichoke hearts, defrosted, halved, pat dry (I couldn't find frozen, so I used canned)
1/2 cup dry white wine
4 tablespoons butter
3 slightly rounded tablespoons flour (I used sweet rice flour here)
2 cups milk
Freshly ground black pepper
Freshly grated nutmeg
5 ounces Gruyere cheese, shredded (about 1 1/2 cups)
1 cup shredded Parmigiano-Reggiano cheese
DIRECTIONS
Position the oven rack in center of the oven. Preheat the oven to 375 degrees F.
Defrost the spinach in the microwave. Drain, then dry the spinach out as much as possible by wringing it out in a clean kitchen towel.
Bring a saucepot of water to a boil. Add salt. Add the pasta and cook according to package directions for al dente.
Meanwhile, heat 2 tablespoons extra-virgin olive oil in a small skillet over medium to medium-high heat and add the shallots and garlic and cook 2 to 3 minutes. Add the artichokes and cook until they are lightly brown. Add the wine to deglaze the pan.
While the artichokes and pasta cook, in a saucepot over medium to medium-high heat, add the butter. When melted, whisk in the flour for 1 minute or so, then whisk in the milk and season with salt, pepper and a little nutmeg. Cook 5 to 6 minutes, or until thick enough to coat the back of a spoon, adjust the seasonings and stir in the Gruyere cheese. Combine the sauce with the spinach, pasta, and artichoke and stir until just combined. Transfer the mixture to a baking dish and cover with the remaining cheese. Cool and store for a make-ahead meal.
Bake on a baking sheet 45 minutes or until brown and bubbly on top.
The picture above is from the "Week in a Day" website. I wish I could show you a picture of my dish, but I seem to be having problems uploading pictures to Blogger today! Ugh. However, it came out amazing!!! The only issue I had with making this dish was that it dirties a LOT of dishes! Otherwise, everyone gobbled it right up...including the leftovers!
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