Fear of Food...

When I was first diagnosed with Alpha-gal Syndrome I had so many emotions. You can read more about that in detail in my blog post (Meat and Potatoes Anyone?!). But one of the main things that happened, that I did not expect, was a fear of food. Fear of the next meal causing me a reaction. Fear of the pain that comes with eating the wrong food. Fear of what is in the foods that may trigger a histamine response. Fear that if I eat the wrong thing my throat would close up in the middle of the night while everyone was sleeping and I couldn't get to my epi-pen fast enough. The list goes on. And the fear grew for a while.

Now that I knew that it was AGS and severe allergies causing all of these problems in my body. It was real. It wasn't just me thinking or being told "its in my head" or "your labs are normal" or "your white cell count is way too high, but all the tests are negative, so go home and rest". All the things that had been hindering my life for years were most likely due to AGS. But somehow that didn't make the fear any easier in the beginning. I guess I had been living with the symptoms so long I just thought this is how its supposed to be, this is how my body will always feel, this must be normal. But it most definitely was not normal! And the realization set in that the wrong food could kill me.

For anyone who has experienced severe allergic reactions or AGS you may understand what I am referring too. But if you are new to AGS and think "well this lady is just being over dramatic" or "this wouldn't happen to me"; I am so grateful that you have not had to experience the pain and severe symptoms that can go with AGS. This blog may not be for you and that is okay. But for anyone who has felt this way or is in the heat of it now, stick around. Maybe my journey could help you. And don't worry, in time that fear becomes manageable and eventually goes away. You will always have to be cautious, but you don't have to live in fear.

Because of that fear, for the longest time I stuck to the same couple of foods. I had no real variety. No real joy in my meals. No looking forward to eating or trying something new or special. No eating with my family or eating what I made them for meals. I would cook my family a warm, hearty, filling meal and I would eat a bowl of cold salad. At women's ministry finger food nights, I would sit and eat carrots and watch everyone else enjoy delicious, homemade goodies that each lady made for all of us to enjoy. I couldn't participate in church breakfast or dinners out with friends and family. All because I feared having an allergic reaction and ending up in the hospital. A valid fear, but I let it dictate my life.

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I was reading, studying, and learning about AGS and high histamines, amongst my other allergies. And at first there was so much information and so much to learn; it was overwhelming, so very overwhelming. Trying to narrow down what is going to cause me problems and what I would be able to handle. So to protect myself, at first, I ate salads full time or just skipped meals all together. I felt like I was missing out. Which made me begin to burn out on eating the same things over and over, every meal. I not only had a fear of the foods that would make me sick, I began to dread eating a food that I knew wouldn't cause me a reaction.

Now you would think that eating salads all the time or skipping meals would "improve" my health. (I am using that term in the broadest of sense) But it didn't. I gained almost 40 pounds, my blood pressure went up, my heart rate was raised, I was tired all the time, my stress levels were through the roof, and in general I just didn't feel good. Even though I wasn't having "allergic reactions" all the time, I still felt miserable.

Coming from a medical family and being trained and certified in sports nutrition, I slowly realized that I wasn't fueling my body in a way it needed. (hence why I felt miserable) I was fighting through the brain fog and exhaustion to survive, when I should be trying to think like a personal trainer or coach again. I began to treat myself like I would a client. I had to go back to the basics. Still being to scared at this time to branch out and try a bunch of foods, I simply began to add nutrients to my salads I was already eating.

I started by adding a food and seeing how my body would handle it. Then after a while, if I had no reactions, I would add another food and see how my body handled it. Over a period of time my salads went from plain cold lettuce to a well balanced meal with a variety of ingredients.

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And with time and more education on AGS and my specific allergies, I began to add back in foods until I had a healthy, well balanced diet. I started to slowly feel better and the fear of food began to fade into the background of my new lifestyle. I am still careful with my foods, I check each ingredient, I cook at home, I don't eat out unless I know for sure it is safe for me, and I plan meals ahead for trips or events. But that is just a part of my new AGS journey, not something to fear.

A few simple things I did to add variety and nutrients to my salads:

• First- salad mixes with a delicious mix of lettuce, greens, cabbage, etc. (so that I wouldn't get burned out on one type of lettuce) Also a mix of lettuce, greens, & cabbage can add a variety of nutrients, vitamins, and minerals.

• Nuts & Seeds- I always try to keep an assortments of nuts on hand for snacking, cooking, and to add to salads. Some of my favorites are: pepitas (pumpkin seeds), almonds, pecans, macadamia, pistachio, and walnuts. Nuts give you a healthy fat, protein, fiber, vitamin E, magnesium, selenium, and other nutrients. A small amount can really add a lot of flavor, texture, and be so filling.

• Freeze Dried Fruits- I love freeze dried fruits. No additives, no added sugar, and they are perfect in a salad (or a handful as a snack). As the dressing and natural juices from the salad hit the fruit, it makes it the perfect texture and bursts with flavors.

• Granola- assorted granola can add an extra flavor, create a new texture in the salad, add a little crunch, and give you some extra nutrients and fiber.

• Fruit- there are so many ways to add fruits to a salad and there are many types of fruit that work so well on a salad. Fruit can add so much flavor and texture. It can take your salad from bland to bursting. Plus you get so many vitamins and nutrients from fruit.

• Vegetables- veggies on a salad? Absolutely yes! I add a mix of veggies on top of my bed of veggies/greens. Veggies have almost everything your body needs to be happy and healthy. They are packed with nutrients that not only nourish your body, but help specific organs strengthen, detox, and even heal.

Here's the great thing about a salad. It so simple. You can add so many toppings and there is almost no way to go wrong. Add things that you already enjoy eating. Add things that seem fun to eat. Mix and match the AGS safe topping you have on hand and create new recipes. Go nuts! (haha, mom joke)

Food that is AGS safe doesn't have to be bland or boring. It can be scary and overwhelming at first (trust me, I understand), but don't limit your food so much that your life is miserable and you dread eating. It just makes living with AGS that much worse. Start with a few basics that are AGS safe, then slowly overtime add more and more foods until your new lifestyle feels safe, comfortable, and fulfilling.

I am so excited to write The Art of Alpha-gal blog and watch God grow it, me, and each member who finds us! I hope that this reaches you where you are at. I pray that it can help lighten your experience with a diagnosis that can seem detrimental. That this blog can show you, slowly but surely this disease gets easier and more manageable. And with the right support system and some good food recipes there's greener grass on the other side..... Until next time. Lisa

Disclaimer: If you are having an allergic reaction; please seek help from your medical provider, go to the ER, or call 911 if it is emergent. Alpha-gal Syndrome is a life threatening allergy. Even if you do not have a reaction right now you could have a reaction in 2-6 hours. Please do not eat foods that are going to cause an allergic reaction. Any reactions I have had were before I was diagnosed or from hidden AGS that I did not know were present in a food.