CVID…. what the heck is that?

cvid-ribbonTeam KLB,

Let me back right up to where it all began…

Before I was diagnosed with Breast Cancer I had noticed that almost every time I ate, my nose would run. It didn’t matter what foods I ate, whether I was eating on the go, or whether it was spicy or not. Most meals made my nose run. I had even commented on this to Jim. I assumed this was some type of additional food intolerance.

During my time going to Bauman College (my in person classes, before I switched to distance learning), we learned about histamine and that got me thinking that this must be related to some issue with histamine. That stuck with me, but then I was diagnosed with breast cancer, so many other things got put on the back burner.

Fast forward to early 2016. At that time I had been completely done with all cancer treatments for about a year and had my last surgery in Oct. 2015. I kept waiting to get my energy back, to not have to drag myself out of bed every morning, to feel like myself. I know my body well enough to know that there was something else going on. At that time, I just didn’t know what or who to ask. In mid spring of 2016, while on instagram, I found a post by a woman with the handle @thelowhistaminechef (she has since changed her handle and can be found at Healing Histamine.) Coupling my low energy with my runny rose, I thought, THIS must be what I need to learn more about. THIS is what I have. And to top it off, she was going to be a Paleo F(x) in May. I had to go see her talk.

At Paleo F(x), she did a food demo. After the food demo, she answered some questions about her experience. (A great story, by the way, I highly recommend checking out her page). After going into anaphylactic shock while reporting for CNN in war zones, she consulted a naturopathic doctor. This eventually lead her to a diagnosis of Mast Cell Activation Syndrome (MCAS) and to a low histamine diet. She encouraged her listeners to reach out to an immunologist or a naturopathic doctor. When I came back home after the conference, I looked up MCAS and contacted my doctor for a referral to an immunologist. There are many symptoms of MCAS, but the ones that I noted were: gastrointestinal (intestinal discomfort), brain fog, headaches, migraines, general fatigue, being cold all the time, food and chemical sensitivities (including perfumes), and of course my respiratory symptoms.

I met with an immunologist just a couple of days after arriving home from Paleo F(x). Before going to the doctor appointment, Jim jokingly said, “they’re going to put you on the no food diet” since this was something I dealt with at nearly every meal. It was the most thorough doctor appointment that I have ever had with a doctor. I told her about what I thought I had and about my symptoms that aligned with MCAS. Then she went on to ask me about everything I had ever done. I told her about my my cancer diagnosis and treatment, my recurrent sinus infections, my digestive issues, chronic yeast infections, and a systemic yeast infection. I told her a story to illustrate my experiences. In Feb. of 2016, I got a common cold. That cold lasted for four weeks! And then I was well only for ONE WEEK before I started getting sick again. This is a common occurrence in my life. She then did a physical exam and told me that she didn’t believe I had MCAS because people that have it usually have skin lesions and I don’t have any of those. She did, however, suspect that there was probably something amiss with my IgA. She noted that the sinus symptoms and the bloating and digestive discomfort was like a red flag for low IgA. She asked me to have 11 vials of blood taken for testing and asked if I would get the pneumonia vaccine to help determine what I had. I decided to put off the vaccine until I knew I needed it.

Throughout the appointment I was able to convey to the doctor that I wasn’t looking for a prescription or a quick fix. I wanted to understand what is wrong with me and to do everything in my power to heal it on my own with holistic, natural, and diet/lifestyle based interventions. I know my body and I know when things are “common, but not normal” (refer to this post for more…) and when there is truly something amiss. She was awesome. She was so impressed that I knew my body so well and that I listened to it. She also understood that as a holistic nutrition consultant, I practiced what I preached.

After two separate blood draws (I pass out folks!) I went back to learn about my results. Here they are:

IgA  <6 mg/dL                   Normal range: 87-474 mg/dL

IgG 343 mg/dL                 Normal range: 681-1648 mg/dL

IgM 26 mg/dL                   Normal range: 48 – 312 mg/dL

IgE <2 kU/L                        Normal range: <114 kU/L

Please note those normal ranges come directly from the test results. As you can see, they are all very low, but my IgA and IgE were the lowest. Based on these test results and the fact that most of the other test results came back “normal”, she believes that I have Common Variable Immune Deficiency (CVID). However, she could not diagnose me without first giving me the pneumonia vaccine. To be able to diagnose, she had to prove that my body did not respond to the polysaccharides in the vaccine. So reluctantly I got the vaccine. Six weeks later I had my blood taken again to see if I had any presence of antibodies. When looking at the test results, side by side, you can see there are virtually no differences. To my body, it’s like I wasn’t even vaccinated, I have no antibodies built up to the pneumonia virus. So on August 4th, I was officially diagnosed with CVID.

Here’s an FAQ:

Q: What are the treatment options?

A: There are three main treatment options:

  1. Prophylactic antibiotics. Basically a prevention in case I get sick. Just in case. This option is not for me. I’m anti prophylactic antibiotics. See this post for more on why….
  2. Immunoglobulin infusions. The immunoglobulins come from healthy blood donations. They are then processed so that it’s just the immunoglobulins, not all of the blood. It is actually a clear liquid.
    1. Every four weeks, for about 4-5 hours at the infusion center at the medical center. Indefinitely.
    2. Weekly, for about two hours at home. These infusions are subcutaneous (under the skin in the abdomen region.) I would give the infusion to myself. Also indefinite.

The advantage of doing weekly infusions are: you don’t have to sit at the infusion center for 5 effing hours every month! and that your IG levels stay more stable rather than spikes and dips with monthly infusions. The disadvantage is that you have to do this each week and you have to do it yourself. Ick.

Q: How did you get this? Is it related to cancer?

A: I was born with it. The doc believes I was born without IgA and IgE, and that the rest of my immunoglobulins are low because they have been working on overdrive to compensate. Most people do not get diagnosed until they are in their 30’s or 40’s. It does not have anything to do with my having had cancer. However, a compromised immune system is more at risk for cancer. Think of it this way: the immune system is like an army. My immune system doesn’t have very many soldiers (very low IgA and IgE) and the soldiers it does have are busy fighting small battles (low IgM and IgG). So when a big battle (cancer) comes along, it can only do so much to fight the cancer.

Q: What are the infusions like?

A: They are mostly long, boring, and uneventful. Except for the first one.

I remember my doctor mentioning something to me about the fact that because I don’t make IgA, I could have antibodies built up to it. This means that I could go into anaphylactic shock. That’s where I remember the conversation ending, which left me concerned. So before I would let them give me anything, I asked how they test, prevent, or treat for this. The standard protocol is to treat with premeds (antihistamine, hydrocortisone, and Tylenol) and then to ramp up slowly. For the first half hour, the dose is very low, and every half hour they increase the dose. They also have additional meds (Benadryl) if needed. Once I felt that I understood their plan, I consented. Initially, I noticed nothing. But after the first half an hour, when they increase the dose, I noticed feeling a little flushed. Then I noticed that near the IV site, my arm felt kind of tingly. A little bit itchy, but mostly like someone had put icy hot on my arm. I told the nurses and they decided that they should flush my IV with saline. Then they gave me Benadryl and more hydrocortisone and restarted IV. My arm was still tingly and so they slowed infusion down. This did not seem to help. The doctors and nurses came to check on me and it was decided that since it was only near the IV site, and not all over my body, it was probably not an allergic reaction. We continued the infusion. Afterwards, I had a bit of a headache and felt tired from the Benadryl. The nurse emailed me the next day to say that she had talked with my doctor and that the tingly feeling was normal. The second infusion went much smoother, but I still had the tingly sensation.

Q: What differences will you notice?

A: The doctor said that is likely that I will notice feeling less tired. She didn’t seem to think But many of my other symptoms would go away. I should also get sick less often and be able to have and more robust immune system. So far I haven’t noticed much. My levels were so low that it could take a while to rebuild them to normal.

Q: You’re doing all of this for a runny nose?

A: No. It’s much more than that. It’s giving myself an immune system that actually functions. It’s preventing cancer reoccurrences. It’s regaining energy. It’s preventing a lot of hospital visits due to “non-serious” illnesses. The runny nose was my catalyst for seeking out medical help for a much bigger problem.

Q: What are the risks associated with CVID?

A: Getting sick, a lot. Many people with CVID end up getting very sick from things like pneumonia. Or are just chronically sick.

Here is a link to learn more about CVID.

Thanks for reading this, it was a lengthy one!

XOXO,

Katie

July 2016 Book of the Month – Gulp

The July 2016 Book of the Month is Gulp: Adventures on the Alimentary Canal by Mary Roach. While attending Bauman College, for my Nutrition Consultant certification, one of my teachers recommended this book to me. It was fascinating! I give Gulp *5 strawberries*. 5:5 Strawberries

Roach begins the book at the beginning of the digestive system, or alimentary canal, as she refers to it, and works her way to end of the alimentary canal, detailing the function of each organ along the way. She interweaves anecdotal stories and humor throughout the book making it delightful, funny, and thoroughly educational.

Is it weird to admit that the chapter that sticks with me the most is the chapter on fecal transplants? This book was the first time that I had heard of them, but since reading it, I have heard of the idea in several other books and podcasts. Roach illustrates that in our current society, we have demonized all bacteria and become a culture sanitizing madmen. And while bacteria can be harmful, bacteria also makes up 90% of all the cells in our body and we wouldn’t be living without bacteria. Currently, fecal transplants are mainly used to cure C. diff  infections, but doctors and researchers are finding that there could be a greater need for fecal transplants due to the overuse
of antibiotics and sanitizing efforts. Roach states “Rarely does medical science come up with a treatment so effective, inexpensive, and free of side effects” (Roach, 2013, p.321). The main side effect is probably the “ick factor”.  😉 I finished the book thinking that this might possibly the way of the future.

I highly recommend Gulp to anyone that is fascinated by the amazing human body.

 

 

What will be Your Catalyst for Change?

Many of us want to make a change in our diet, lifestyle habits, or routines, but something holds us back. Maybe because it pushes us out of our comfort zone? Maybe because it takes work to change our habits? Maybe it is hard to fit in the budget? Whatever your barrier is, it is holding you back.

Health complications that typically develop later in life are a result of diet and lifestyle factors that have been accumulating over many years. Think of when a smoker develops lung cancer. When that person develops lung cancer, it’s highly likely that they wish they would have quit smoking earlier or never started smoking in the first place. I would venture to say that the same is true for most major health problems. Whether it is an Autoimmune condition, Cancer, Type II Diabetes, high blood pressure, Fibromyalgia, or even Leaky Gut, most people’s first reactions include wishing they had made different choices in the past. The problem with this approach to change is that it is reactionary. It’s filled with wouldas, couldas, and shouldas. It’s also filled with a lot of self-blame and self-hate.

There were three words that left me speechless and petrified. “Katie, I’m sorry to have to IMG_0521tell you this, but it’s cancer.” In the days, weeks, and months following my diagnosis, I asked myself what I could have, should have, and would have done differently. The list was endless: I would have been very strict about my monthly self-exams, I wouldn’t have taken the HRT (hormone replacement therapy) to help combat my cycle-driven migraines, I would have pushed my doctors to get that mammogram at age 30 that I had told myself I would get because I have a strong family history of breast cancer, I would not have taken countless rounds of antibiotics for acne as well as for sinus infections, I would have found ways to manage my stress levels more appropriately, and I would not have taken bottles and bottles of NSAIDs to deal with my headaches. I could go on, but I’ll spare you. (I’m definitely not encouraging people to blame themselves, but to wonder what we could have done differently is only natural.)

The problem with this reactionary approach is that while we can make changes going forward, often times, the damage has been done. However, the bigger problem to this approach is that there are usually warning signs that something is “off” and we ignore those signs. Acid reflux/ heartburn, also called GERD (Gastroesophageal reflux disease) is common and is therefore thought of as “normal”. It is not normal. It is a sign of a bigger issue. Most people just pop a few antacids (a Band-Aid) and continue on with their lives, never stopping to get to the root of the problem. It starts to become “your new normal” and then just normal. And since so many people have it, the root cause is rarely questioned. The same could be said for headaches, stomach-aches (actually, they usually are pains in the small intestine or large intestine, so the term gutache would be more accurate), skin rashes, acne, and other so-called normal problems. These are warming signs that our diets and lifestyles need an overhaul.

Allow me to digress. While reading, The Third Plate: Field Notes on the Future of Food by Dan Barber I came across the section about sustainable organic farming practices. The farmer that Barber interviews discusses his approach to weed management. Soil is living and filled with microorganisms. Good farming practices ensure the health and fertility of the soil. Soil is also full of micronutrients, when it has the appropriate micronutrient levels, there are no weeds. However, when there are micronutrients missing, weeds begin to appear. Each weed indicates a specific deficiency and when that deficiency is addressed, that type of weed disappears. The overarching idea is that these weeds are indicators of larger systemic problem that can be addressed by adding back the missing micronutrients. Now I realize we aren’t the soil, but let me continue to digress just a bit more. If you extrapolate that idea to humans, it might play out like this: minor health problems (the weeds) are a sign of a systemic problem (nutrient deficiency, lifestyle factors, environmental factors, gut issues, etc.), so to address the minor health problems you need to address the systemic problem and circumvent any larger health problems down the road (a garden overtaken by weeds). Thanks for allowing me to digress. Now back to your regularly scheduled programming.

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You can stop this cycle. You don’t have to have a frightening diagnosis. You can return to health. I bet you have even identified the “normal problem” that you’ve been mostly ignoring.

Start with that nagging problem. Start a journal to find patterns and trends. See if you can tie your headaches/heartburn/breakout/etc. to a food, habit, or environmental factor (like cleaners and body products). A basic daily journal would include the following:

Breakfast – foods and liquids: _________________________

Snack – foods and liquids: ____________________________

Lunch – foods and liquids: ____________________________

Dinner – foods and liquids: ___________________________

Additional liquids: _________________________________

Supplements (dose and time):_________________________

Medication(dose and time):___________________________

Exercise: _________________________________________

Sleep: ___________________________________________

Relaxation: _______________________________________

Mood/Emotions: ___________________________________

Nagging Problem? Time? Duration? ______________________

After a 3-4 weeks, it’s likely that you’ll see a trend, which can then lead you to a hypothesis. With the hypothesis, you can then seek additional help from Dr. Google, books, your doctor, a chiropractor, a physical therapist, a Nutrition Consultant (ME!), or a naturopath. By choosing to gain control of the nagging issue, you can remove yourself from the path to the bigger and scarier health concern that was down the road.

Obviously I cannot guarantee that because you have a minor common health problem that you are going to get a larger, scarier health concern. No one knows that. But what I can say is that even the minor health concern is negatively impacting your life. Why not make a change and a commitment to feel the best that you possibly can?

What will be your catalyst for change? What are you waiting for? Will you wait for things to get worse? Or will you heed the warning signs that your body is giving you?

Hugs & Health <3,

Katie

DISCLAIMER 

References:

Barber, D. (2015). The Third Plate: Field Notes from the Future of Food. New York, NY: Penguin Books.

What is The 21-Day Sugar Detox?

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Many people stumble across The 21-Day Sugar Detox posts or books and wonder, “What is The 21 Day Sugar Detox?” and “How can it help me?”. In this post, I’ll explain exactly what the 21DSD is all about.

Q: What is The 21-Day Sugar Detox?

A: This is a 21 day plan to help you bust sugar cravings naturally. The goal of the 21 DSD is to eliminate sugars from your diet and change your taste buds to crave less sugar.  “Sweets” are eliminated for the 21 days as well as so called “health foods” like sugary cereals, breads, meal replacement bars (aka sugar bars), and other foods that contain added sugars. When you eat less sugar, you crave less sugar. Simple as that. Sugar alternatives are out as well. Check out the book, The 21-Day Sugar Detox: Bust Sugar & Carb Cravings Naturally, for more on the “Yes” foods, the “No” foods, and the “Limit” foods.

Q: How can it help me?

A: Everyone experiences different results while on the 21 DSD. Some of the results from past participants include: increased energy, better sleep, moods stabilized, clearer skin, being in control of food cravings (rather than the other way around), weight loss, mental clarity, less bloating, regular & healthy bowel movements, reduced headaches, improved blood tests, reduced anxiety, and stable blood sugar. Your results will vary.

Q: Do I have to buy a bunch of stuff (supplements, meal replacement shakes or bars, etc.)?

A: No, this is a real food plan. No junkie meal replacement foods are allowed. The goal is to eliminate processed foods that are nearly always laden with sugars and other highly processed and unnatural ingredients.

Q: What do I need to buy?

A: Besides my coaching fee, you don’t need to buy anything. This is not so much a product, but a shift in mindset and behaviors in regards to food. See this post for an additional Q&A and for instructions on how to join the next detox.

Q: What is included?

A: In the guidebook/online membership site you have recipes, meal plans, yes/no/limit food lists, guides for dining out, modification guides for pescatarians, athletes, nursing moms, and those with autoimmune conditions. But most importantly, you have information about the negative effects of sugar in the body.

Q: How much is the coaching fee?

  • A: Local September in-person group: $199 per person (guidebook included!)
  • September group Online price: $149 per person (guidebook included!)
Q: What’s the difference between the In-Person group and the Online group?
Online Group In-Person Group
The 21 Day Sugar Detox Guidebook
Participant Workbook
Access to our Private Facebook Group
Access to my Expertise as a Nutrition Consultant
Motivation
Accountability Partner
Daily 2-Minute Educational Videos
Three LIVE conference calls
One 15-minute one-on-one personal call
Four In-Person Sessions:

  • Whole Foods  Shopping “field trip”
  • 21DSD Meal Swap/Potluck
  • Sugar Seminar
  • Life After the Detox
21 DSD Snack Pack

  • Filled with Foods to help you survive the Detox
21 DSD Product Sample Swag Bag

  • Filled with samples of foods for your Detox

The 21-Day Sugar Detox Online Group Coaching with Katie

 

 

The 21-Day Sugar Detox In-Person Group Coaching with Katie

 

 

Now some questions for you…

What goals do you have?

How might your current diet be a barrier for those goals?

What are you waiting for?

What will it take for you to make a change?

Hugs & Health <3,

Katie

Refund Policy:

Participants may postpone their detox start date within three months of payment. Once materials have been distributed, no refunds will be issued.