Sweet Treats

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On cold, rainy days like today I promise myself cardamom chai from Revolution Doughnuts to drag myself out of bed. That’s not to say I always end up there, but today I did, and they had their low-gluten, low-grain* dough-nuts!

This AIP paleo thing has been rough, but step by step I’m feeling better. It’s all about making your life choices work for you.

*They say “low” because they make the dough-nuts in the same kitchen with all their other products.

Cheaters Never Prosper

Let’s face it. Elimination diets are hard. Really hard. So let me recount what has happened on the days I’ve slipped up….

Cheat #1: Sushi. I knew gluten was something to avoid, sure, but I didn’t altogether believe the whole “grain-free” need. Until I ate sushi one night. My joints ached for three days.

Cheat #2: Donuts. I was trying to be so good. I went to Revolution Doughnuts (who, by the way, have delicious low-grain/low-gluten donuts, if you don’t have a nut allergy). Unfortunately, they were out of the “dough-nuts,” so on a whim I got a few of my favorites. Cake-style Vanilla Bean, yeast-style Cinnamon Sugar, and a Cinnamon Apple Fritter. In just a few hours I was exhausted and achy. It lasted for days.

Cheat #3: Choco-Pie. Not having eaten all morning, I couldn’t resist this Moon Pie-like treat a friend had brought in for class. I went home immediately afterward and slept for three hours in the middle of the afternoon.

I saw the rheumatologist last week, My RA is at a moderate level, so we’re having to up my dosage of Remicade to the highest possible amount and consider new treatments. I spoke with my doctor about the AIP (autoimmune protocol) diet I was trying, and she said it was a great idea.

I know what I need to do. I know what foods I need to avoid.

It’s difficult.

AIP Apple Spice Bread – Going Paleo Deliciously

wpid-img_20151004_185248.jpgFall and winter are easily the most difficult times of the year to avoid grains and gluten. As someone who adores baking – for the smells and the flavor and the relaxation of it all – going AIP paleo has been rough. Bordering on impossible, really. My search for AIP baked goods (that actually taste and feel like baked goods) has been difficult and frustrating.

Finally, I have discovered something worth sharing!

When I was growing up, a dear friend’s mother would bake the most delicious pumpkin bread. For whatever reason, that pumpkin bread recipe came back into my life this week. My first thought was sadness that I had finally procured this delicious recipe but would be unable to bake and eat it. But then something about the recipe caught my eye…

It requires two packs of pudding. Pudding means gelatin. Gelatin holds things together. Maybe this could work! So I began to dig through posts on the internet for tips on substituting flaxseed for eggs and how to make pudding from beef gelatin. Because I didn’t have pumpkin on hand, I decided to substitute with applesauce.

And viola! This recipe was born.

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AIP Apple Spice Bread

Ingredients
wpid-img_20151004_185436.jpg5 TBL flaxseed meal (works better if the flaxseed is freshly ground)
3/4 cup coconut milk (or water)
1 cup oil
1 cup applesauce (or pumpkin or mashed ripe bananas)
2 cups coconut sugar
1 tsp vanilla (omit if using vanilla coconut milk)
2 TBL gelatin
plus 1/4 cup additional coconut milk
2 cups coconut flour
wpid-img_20151004_185345.jpg1/2 cup tapioca starch
2 tsp baking soda
2 tsp cinnamon (1 tsp for banana bread)
1/2 tsp nutmeg (omit if making banana bread)
1/4 tsp ground cloves (omit if making banana or pumpkin bread)
1/2 tsp salt

Step One: Set the oven to 350 degrees Fahrenheit. Grease two 5 x 9 inch pans with solidified coconut oil or palm shortening.

Step Two: Mix flaxseed with 3/4 cup coconut milk. Set aside to gel.

Step Three: Mix oil and sugar. Add fruit purée and vanilla.

Step Four: Mix gelatin with 1/4 cup coconut milk. Set aside to gel.

Step Five: Mix together all dry ingredients.

Step Six. Combine flaxseed paste with gelatin mixture. Fold into wet ingredients. Stir in dry ingredients.

Step Seven: Smooth into greased pans, being sure to evenly distribute the batter. Bake for 65- 70 minutes until a toothpick inserted into the center of the loaf comes out clean.

Enjoy! I highly recommend slathering a slice of the bread with coconut oil. So good…

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*If you try the recipe and find out something different works better for you, please let me know!

Pressing the Reset Button

handNow and again, there comes a time when we just need to take a breather and hit the reset button on life. Frustrations mount, stresses build, and complications twist everything into a knotted, tangled mess. You can’t always walk away from your stressors – usually you can’t – but you can take a step back. You can take a moment to yourself and reenter the situation with a fresh perspective.

This month, that’s exactly what I’m doing: Resetting.

Resetting My Body – Starting AIP

For those who have been following the blog for awhile, you know that I’ve had trouble with chronic fatigue for about a year and a half now. For months at a time, I would need 10 to 14 hours of sleep every day. Even awake, I wandered through life in a fog, exhausted and unmotivated. Two things entirely contrary to the life of a grad student!

carbsWhen my doctors couldn’t figure out what was wrong, I decided to take my health into my own hands. I started researching my symptoms and found the autoimmune protocol paleo diet. No grains, no legumes, no dairy, no nightshades, and no starches. Yikes! As someone who has spent most of the past 10 years as vegan or vegetarian, it was pretty scary to think about eating animal flesh at every meal. However, all of my symptoms kept pointing to the AIP as a way to reset my digestive system and stop the extreme autoimmune reactions causing my fatigue and inflaming my joints.

This past weekend, I celebrated my birthday with all my favorite foods! Ice cream, cupcakes, pasta, chocolate… 28 never tasted so good. September first marked day one of my 30-day AIP reset. I’ll be updating SuddenSight with my posts about the experience, so keep checking back for updates!

Resetting My Mind – Taking a Step Back

The fatigue, as well as numerous setbacks with my eyesight since January, made finishing my master’s degree this summer, well, difficult. I did manage to turn in everything and have my paper accepted (hooray!) Still, moving forward I decided I needed to recognize my physical limitations.

Even on my good eye days I read at half the speed that others in my program read. When I’m sleeping 10 hours a night, it becomes virtually impossible to keep up with the 60 to 70 hour work week required to keep up with three graduate classes and teach a class. So I took a step back and slowed things down for a bit to let my body catch up.

I’m only taking two classes this fall, and I’m pushing myself to make more time for yoga classes and cooking – my favorite relaxing hobbies.

Resetting My Blog!

ice creamTaking all of this into account, I’ve also decided to shift the focus of this blog a bit. I don’t want to spoil too much, but this fall SuddenSight will be relaunching with an all-new look! Get ready for more health and lifestyle posts, a recipe section, and guest bloggers featured each month.

Stay tuned for more news!

Waking Up: How I Took my Health into my Own Hands

For the past year, I’ve been tired. Exhausted, really. I’d sleep anywhere from 10-12 hours a night, but still walk around like a zombie all day and take frequent naps. I was miserable. But according to my doctors, nothing was wrong.

Vitamin D levels? Normal with my daily supplements. B6 and B12? Fine. Thyroid? Enlarged, but showing no signs of hyper or hypothyroidism. So why was I so exhausted all the time?

I talked with my GP, with my rheumatologist, and with my friends who have similar autoimmune issues. My GP wasn’t very concerned at all, but after six months of pushing she recommended I start on Wellbutrin, an antidepressant. Don’t get me wrong, I’ve had my fair share of depressive episodes, but this didn’t seem like one of them. I was exhausted, sure, but I didn’t feel sad or upset. Still, I started taking a low dose of the medication. It didn’t help.

IMG_20150804_001340My rheumatologist seemed even less concerned. Fatigue is associated with some autoimmune disorders and can come as a side-effect of the Remicade treatments. I spoke with his PA Anna, and she mentioned that some patients have seen positive results after changing their diets. While she couldn’t medically recommend a specific diet, she did tell me that many patients she (and many of her colleagues) spoke with reported lessened inflammation with certain dietary restrictions: no gluten, no dairy, no alcohol, no refined sugar, etc. I’d tried some of this before to no avail, so I packed that discussion into the back of my mind.

Taking my health into my own hands

When both doctors reported no signals for the fatigue in my bloodwork and seemed rather unconcerned with getting to the root of the problem quickly, I took matters into my own hands. Because of the Remicade treatments, my rheumatologist orders a full CBC (blood workup) every two months and posts the results online. These worksheets became my obsession.

First, I will say this: no matter what your Google search turns up, check with your doctors about their validity. My GP has had to talk me off many a well-intentioned ledge where I just knew I had figured out the cause of my fatigue. Never be afraid to ask questions, or to ask about your options. Remember: it’s your body. Your doctors are there to help and have a lot of knowledge, but they aren’t perfect. If they say something won’t work, politely ask why. If you aren’t satisfied with that answer, don’t be afraid to ask another doctor.

Keeping this in mind, I started my own research process. When the usual signals for fatigue were fine, my GP asked to see the bloodwork from my rheumatologist. I should note that I am currently in the process of switching GPs because my previous practitioner is changing her practice. I wasn’t able to see her again before the change and share my findings, but I had put together a year’s worth of CBC workup results. Looking through them, I could see clearly when my surgeries had taken place. The neutrophil and white blood cell count would shoot upwards immediately following the procedure, then settle back to a normal level before the next workup.

I also saw a recurring pattern: high MCV, low alkaline phosphatase. My first thoughts were, “What the hell is that?” and “Why haven’t we talked about this before?”

Maybe it’s B12 malabsorption

And so, I Googled… MCV stands for “mean corpuscular volume,” and the higher it is, the larger your red blood cells. This can indicate a condition called macrocytosis, or macrocytic anemia, which is often a sign of B12 deficiency. A vitamin B12 deficiency does point to my symptoms – fatigue, depression, brain fog – but consistently my bloodwork has shown normal B12 rates. However, normal B12 levels don’t necessarily account for your actual B12 absorption rate (and can often underestimate macrocytosis). Some sites recommend a methylmalonic acid test. Buildup of methylmalonic acid in the urine indicates that your body isn’t using B12 the way it’s supposed to.

In other words, the tests could be wrong, and there are better tests I can try.

Other relevant causes for the high MCV could be a folate deficiency (my levels are fine) or past chemotherapy treatment. I was on cyclophosphamide (a chemo drug) for more than a year, so that could be the cause. (Also, myelositic diseases, megaloblastic marrow, leukemia, liver disease, etc…)

My solution: I’ve made an appointment with a new GP. I plan to discuss the B12 testing process with her and start on a B12 supplement.

Maybe it’s hypothyroidism

Here’s another case where my CBC indicates normal thyroid function, so says my rheumatologist, but several sites indicate that there are better tests to determine hyper or hypothyroidism. Hypothyroidism is often linked to an autoimmune disorder, Hashimoto’s disease. It also runs in my family. The only major difference I see in the symptoms of hypothyroidism and my own are my high heart rate, lack of weight gain, and lack of a goiter (thank goodness!) Still, it’s probably worth checking out.

My solution: Talk with my new GP about better thyroid testing.

Maybe it’s alkaline phosphatase deficiency!

This one seems pretty obvious, considering my alkaline phosphatase levels have been consistently low for at least a year. Beyond fatigue, other relevant symptoms include cold intolerance (check) and rapid heart rate (double check), as well as shortness of breath, constipation, and extreme weight-loss. And guess what? It can also be caused by B12 deficiency and hypothyroidism – as well as aplastic anemia, anemia, and myelogenous leukemia. So far, my symptoms and CBC abnormalities seem related.

All of these – B12 malabsorption, hypothyroidism, and alkaline phosphatase deficiency – can be subsequently linked to malnutrition. In particular, the need to increase and regulate levels of vitamins A, C, B6, and B12, folic acid, and phosphorous.

My solution: Look at my normal diet and make some changes.

Maybe it’s my diet

IMG_20150806_205816A few years ago, I ran into Christina, an acquaintance from high school, at the Five Points MARTA station. It was particularly surprising because Christina lives in Florida, we hadn’t spoken since I graduated ten years ago, and we were heading in the same direction. Talking with her on the train, I found out we had both been dealing with autoimmune disorders (me: rheumatoid arthritis, her: Hashimoto’s disease and narcolepsy), and we were both in graduate school for our doctoral degrees (me: political science, her: biomedical science with a focus on intestinal immunology).

Basically, she’s a badass, and you should check out her page!

I’m not one to believe that “things happen for a reason,” but I was glad to have had this conversation with Christina. Really, I wish I’d paid more attention and started my research on intestinal health back then, but grad students will be grad students… She shared her research on the link between autoimmune disorders and “leaky gut” – where your intestinal wall is too permeable and lets particles seep out into your body. Most of the current treatments for autoimmune disorders focus on inflammation and the overactive immune system. New research, like that of Christina and other scientists like Dr. Sarah Ballantyne, focuses instead on intestinal health. In other words, they are trying to treat the potential cause, rather than just stifle the symptoms.

When intestinal health kept popping up in my searches, I contacted Christina again for advice on where to start. She again mentioned the benefits of the paleo diet. If you haven’t heard the specifics yet, the essential idea behind the paleo diet is that our bodies haven’t adapted to many of the foods we regularly eat today. Proponents of paleo eat mainly meats and non-starchy vegetables, shying away from processed foods, sugar, and grain. The stricter autoimmune protocol refines this diet even more, acting as an elimination diet. For the first month, participants will avoid all grains, processed sugar, all nightshades, starches, alcohol, dairy products, and eggs. The will increase consumption of seafood, organ meats, and fermented foods and limit fruit intake. After “resetting” their system, participants slowly reintroduce foods to find out which are triggering an abnormal autoimmune response.

My solution: Try something new.

Going Paleo

For someone who spent 5 years as a vegan and generally tries to eat very little meat, going paleo sounded like a nightmare. Not only would I be giving up some of my favorite things (Ice cream! Baking!), I would be forcing myself to shovel down meat at every meal (very expensive, considering I only buy products from humanely treated animals). However, the exact months I went vegan in 2007 were the same months I started noticing joint pain, which quickly blossomed into a full-fledged flare. It’s also something I had never tried before, and I do rather enjoy seafood. So I decided to give it a try.

IMG_20150805_221532Whether or not you buy into the explanation of ancestral nutrition, the paleo diet does include much higher levels of the nutrients I may be deficient in (A, C, B6, B12, folic acid, healthy fats, and phosphorous). I started the autoimmune protocol (AIP) diet on July 15, 2015. On August 3, my alkaline phosphatase levels were already in the normal range, but my MCV was still high. By August 10, I had noticed significant improvement in my daily routine. Slight joint stiffness still made going to sleep a bit difficult, but when my alarm went off in the morning I was actually awake. Now I can get out of bed in the morning, rather than lying there another hour and a half trying to force myself to function. In the past few days, I’ve noticed the brain fog lifting, and naps don’t seem like such a necessity. The one time I caved and ate rice, my left knee screamed for three days!

I’m not saying paleo is the exact and only reason for the improvements I’ve seen. I’m certainly not recommending it as a one-size-fits-all “cure” for RA. I am merely sharing my own story from my own path. I cannot stress enough that everyone’s body is different and no one should change their diet drastically without fully understanding how to get the right nutrition from the new diet plan.

Remember: it’s your body, take care of it!

Day 2 – Health Activist Writers Month Challenge

Day 2 (April 2) – Introductions
 Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?
 Share links to 3-5 of your old posts (or posts from other Health Activists!) that you think will help
the newly diagnosed.

 

5 Things You Need to Understand About RA

 

1) It’s not just for old people.

After “coming out” about having RA, there have been a rather significant number of young adults in my life who have come out about their own autoimmune disorders. Just a few months ago in the grocery store I heard two women strike up a conversation over organic eggs. As it turned out, they’d both been recently diagnosed with an autoimmune disorder and were changing their diets to help counteract the effects. And when I go in for my Remicade infusions every two months, I see people of all ages in those Laz-E-Boys!

2) It is just for old people.

While autoimmune patients seem to be getting younger and younger (I was diagnosed at age 2), the effects of RA in particular can age you very quickly. I make jokes about being a young person in an old body because RA can make you feel like you’re 80! Rheumatoid arthritis hurts. Your joints can swell up and burn and feel like they’ll never work again. On your bad days, getting out of bed can seem an impossible task–no matter how badly you need to use the bathroom. Lifting a glass of water might even seem a feat for only Superman! This is when you realize how important it is to have young whippersnappers around who love you. 😉

3) It may wizen you, but it also wisens you.

I also joke sometimes that I am an old woman living in a young body. My feet might not have traversed this world for very long, but the experiences I’ve had are significant. I understand better than most how to treasure a walk in the park, how to love my body for exactly what it is, and how to relish in each moment of another day lived to its fullest. Bad days can be frustrating, but good days are so much sweeter in comparison. Because I’ve lived beyond “old age,” I appreciate being young more. And I respect my elders much more.

4) Doctors don’t always know best.

In today’s society, we seem to view doctors as demi-gods. Their opinions are like laws. I, too, used to see them that way. And then a young doctor’s attempt to aggressively treat my RA nearly cost me my life and my sight. When my eyesight began to fail, the wonderful corneal specialist I was seeing actually referred me to a better doctor! This happened not once, but twice. I now see the world’s foremost eye surgeon for patients recovering from Stevens-Johnson Syndrome. Yet even then, he couldn’t figure how to keep my RA from interfering with his surgeries. So when my second rheumatologist wasn’t offering the help I needed (and not seeming to care whether I came in at all), I did some research and found a new one. My current rheumatologist has brought me back to normal! The lesson being: if you aren’t happy or aren’t seeing results, get a 2nd opinion. Get a 3rd, 4th, or 5th! Find someone who has read that obscure article relating perfectly to your case so he, too, can bring you back to normal.

And never, EVER, be afraid to ask questions. While doctors might not be able to prescribe certain things, their knowledge of other patients’ experiences can also prove helpful. For example, when the Remicade didn’t seem to be working all the time, I asked my doctor about dietary changes that could help. Going gluten-free after hearing her stories has been one of the best decisions I’ve ever made.

5) You make your own “normal.”

During my flare-up of RA five years ago, I wondered how long it would be until I was “normal” again. I wanted any quick fix that would erase the pain, the weakness, and the frustration of it all. Instead, I got Stevens-Johnson Syndrome, which took me out of the “normal” world for a year, made life painful and difficult (and EXPENSIVE) for going on five years now, and permanently disfigured my eyes. Through it all, I held onto this subconscious hope that one day it would all be fixed. One day I would wake up, look in the mirror, and be “normal” again. I would have my skin back, my eyes back, my youth back. Then one day I realized that the old me was never going to return. My eyes will always look funny. I will always be on some kind of medication or special diet. I will always have to see doctors of one kind or another. And I will always have the immense strength and wisdom that have brought me to today.

So I will always be different. I will always look different. But I no longer wake up in pain. I can exercise without worrying that I will throw out my knees or cause another flare-up (at least, for now). So instead of being “fixed,” I woke up one morning and embraced this new me, this new “normal.” I highly recommend it for you, too. We might not feel normal, but this is who we are. And we can be this kind of normal together.

 

Check out these links to some past posts that really helped me through the worst days:

Let Them Eat Cake

Connections

Beauty is in the Eye of the Beholder

Finding Normal

Fearing Hope, Needing Hope