Sick of Being Sick: Letter from a Reader

Following is a letter from Travis that I feel is an all too common story. I’ve pasted his entire letter below with his permission, but the summary is that he has finally figured out that food is at least part of what is making him feel so sick, however he’s feeling overwhelmed and frustrated in trying to figure out WHICH foods, and how to eliminate them without starving.  My lengthy response is also below. Spoiler: I can’t really tell him what to do, but I can offer some direction on how to figure it out.

Hi Corn Allergy Girl,

I feel weird calling you that but I don’t actually know your name. Since I was about 10 years old I’ve always felt sick experiencing symptoms that have affected nearly every functioning piece of my body. It started out with just the and swelling of the joints in which I would take an over-the-counter NSAID of some sort and later, see my doctor in which he would denounce as growing pains. Sometimes the pains were so intense I’d start bawling because my shoulder or knee were throbbing and there wasn’t a pain reliever on or off the market that would touch the pain. At thirteen the symptoms spread to my stomach. A lot of things I consumed would hurt my stomach sometimes leaving me in the fetal position in so much pain. Later on, I’m diagnosed with an infection known as h. pylori found by a colonoscopy. The doctor treats me for it and my stomach doesn’t hurt as bad for a while. When we go back for a reevaluation I tell her my symptoms are still present but she says the ailment probably left me with Irritable bowel syndrome so I accept that.

My parents tell me I’m lazy and I sleep too much and at this point are tired of the constant complaining because I never feel well. I stop complaining.

A year later my mom finally realizes something may be off. I can’t stay awake in class and haven’t grown much since the 6th grade. I go to a rheumatologist and he wiggles my joints around and tells me I have migratory arthritis. I tell him something is triggering this but he doesn’t listen.

a few months later have developed the ability to fall asleep in three minutes flat sitting up in a chair. My mom takes me to a sleep doctor. He tests me for sleep apnea the tests come back negative and says I fell asleep in about 15 min and achieved REM sleep as normal, so I ask him, “why am I still tired?” He runs other tests for issues like narcolepsy. All come back negative. He diagnoses me with ADD and says the drug will help me stay awake as well. It doesn’t.

I’m approximately 17 and start to ponder if it’s food related, so I half-ass-ly eliminate gluten from my diet, since that seems to be the most popular allergy/intolerance. I feel worse. Next I try to eliminate a new food on my own: soy. I feel better but not well enough to constitute abstaining from Asian inspired meals. I move to Kansas on my own. I see an allergist he tells me environmentally I’m allergic to everything (something I had already know.) they tell me to pick a couple of foods that I think it might be. I pick shellfish, nuts almonds, soy wheat and milk. I overlook corn thinking I don’t have corn all that often. I come back positive for most of the food but the doctor explains that I’d have to go back through the list and double check because sometimes the positive readings aren’t always true. I realize I’m 100% allergic to soy. I eliminate it from my diet. Again I feel better but not great. I realize perhaps I’ve been too sensitive and that this is just how some people feel due to the foods we consume everyday and the things we’re exposed to.

A month ago I begin working out hoping to achieve the best quality of life possible for someone like me. After every meal my joints swell up. I work out and it’s painful, sometimes I have to quit mid workout because I can’t extend my shoulder due to the massive amount of fluid buildup. But I feel slightly better. Then I eat chipotle, an all organic meal without soy and gmos, and an excellent source of protien, and I get sicker than I’ve felt in months and have to put off working out for a few days. The next day I eat Mexican at a local eatery and begin feeling worse. I wake up confused because I’ve been eating healthy yet, I can barely get out of bed. My stomach hurts and my joints are stiff. I feel hungover and didn’t even have the pleasure of getting wasted the night before. I give up. I keep working out and avoiding soy but at this point I’ve lost hope. But then something happens.

I’m sitting on my couch catching up on The Walking Dead, corn tortillas chips and gauc in hand in enjoying a healthy snack balanced with a portion of zombie violence and I begin to feel awful yet again. I peek over at the ingredients of both items. There’s no soy. There’s corn and sea salt in the chips and in the guac avocado onions cilantro and salt.

First I google corn allergy and everything seems to make sense. (In case you didn’t notice, I found corn is literally in everything!) then I google the symptoms of an undiagnosed food allergy and everything finally seems to add up.

I say all of this to give you a little (or a lot) of background on me. I’ve never really had a rash I know when I consume corn my face breaks out but with zits and acne, not a rash. The past week my face has cleared up and my stomach feels a LOT better however my joints are still in pain. I’ve been doing a lot of research on leaky gut syndrome and how it correlates with food allergies/intolerances and joint swelling. I’m not sure if I have an allergy or just an intolerance and was curious if you knew a sure way to tell. All of my symptoms seem to be internal. Which would lead me to believe it’s an intolerance but again I’m not really sure. I’ve learned that healing a leaky gut can take months and because I can’t take things like probiotics I assume it will only prolong the process. I was hoping you could help set me on a path to achieve the cleanest diet possible. I don’t think I’m as allergic as you are or even close, but reading your website has made me paranoid. Can I eat fresh vegetables and fruits or do I stick to the can or vise versa. Is chicken ok? Should I stay away from beef until I heal my leaky gut or do I risk it? Are there fruits that are 100% safe or should I be suspect to all foods on the market? I read your website often especially when preparing food and was truly just hoping you could shed some light on some this. I’m pretty overwhelmed to say the least.

My Response

Hey Travis. First things first, join this Facebook group. There you will find 5,000 people who have corn allergy, intolerance, multiple allergies, immune disorders that are triggered by corn, and more.

https://www.facebook.com/groups/cornallergy/

That group is the one that saved my life when I first got super sensitive and started reacting to all of my previously safe foods. I am a member and hop on sometimes to answer questions and check on new happenings, but I am not a daily participant due to having a very full and busy life and having my hands full sourcing, prepping, and preserving safe food.  For the most part I would like to refer you to that group as many of your questions are things that other people there are dealing with, but I did want to make a few key observations/suggestions:

 

You Are Not Alone

I’m really glad that you wrote me, because your story is all too familiar. Props for taking charge of your health and deciding to do something to stop feeling like crap. I want to assure you that it is, in fact, possible for you to not feel like crap again. And I also want to assure you that there are people out there who have gone through something like this, myself included.

It won’t necessarily be easy. Unfortunately since bodies are all so different, there will be a lot of trial and error and mystery-solving. But I assure you: you are not alone, and there is hope.

 

Intolerance vs Allergy

Joint pain, acid reflux, acne, and extreme sleepiness are all true “allergy” reactions for me. Not intolerance, allergy. I know this because the triggers are all items that either always did trigger more typical allergic reactions like hives, facial swelling, asthma, or began to as I got more sensitive to the item.

Joint pain in particular was one I experienced my entire life as well. I also had my pain diagnosed as growing pains or juvenile arthritis, but I didn’t ever think there could be a trigger. I just thought I had to live that way for the rest of my life.  And it was terrible. There were times I was immobilized due to the pain and found myself wishing I could amputate rather than feel that way any longer. When I figured out about corn being the trigger, I was both overjoyed that I could control it and angry that I’d lived that way for so long when it could be avoided. 

 The extreme sleepiness I experience is similar to what you seem to be describing, where it feels like I’m just nodding off, and I may have time to lay down before I fall asleep, but it just isn’t really a “choice” per se, not the way just being tired usually is. So don’t assume symptoms like this mean an intolerance not an allergy. The main point of distinction would be that any allergy *can* lead to anaphylaxis.

 

Gut Healing

I get the feeling that you’re focusing on it because you have “cut out all allergens” or at least “cut out all corn” and are still experiencing fatigue, GI problems and other inflammation symptoms. Gut health is important, but I think the absolute most important key both to your gut health and to avoiding allergic inflammation will be removing triggers.

I think it is very likely that you are still eating triggers. Rather than trying to focus on taking items to heal the symptoms (gut issues), you should focus instead on trying to remove food items that help create the inflammation. The process for this is not one-size-fits-all, and if you’ve been reading my blog you know that it was a real struggle for me and I ended up going down to freaking TWO foods because I had a period where everything but those two foods made my throat feel like it was closing up.  Now I don’t suggest you go down to two foods if you can avoid it. I just had no choice for a while there.

But I do suggest the following:

  1. Get on that group I linked you to above.
  2. Read the “pinned post” at the top and all the links in it. On a computer or laptop, the pinned post will be the first post on the main group page. On mobile and tablet, the pinned post will be a tiny link that just says, “Read Pinned Post” and you will have to click that link to see it.
  3. Read the files in the group.
  4. Read the pinned post and all the links and all the files a second, third, and fourth time.
  5. As you do this, and read posts on the group from others, you will begin to discover areas where corn may be hiding in your diet still.  Some people feel like they already know where all the hidden corn is and don’t have anything to learn from the group. 99% of those people STILL find that they learn about things they had never thought of from the group.

    If you feel that you are fine with a food that people are reporting is corny, consider removing that item from your diet for one week and then adding it back in to see if there is a change. If there is no change, then you’re good, that’s not a problem for you. But often we get so used to being a bit sick and inflamed that we don’t notice a problem food is a problem until we are away from it for a while. This is especially important for someone who is currently experiencing mystery symptoms and inflammation. If you were otherwise feeling great it would be less important to check on an item others react to if you feel you are fine with it.
  6. Once you have spent some time, say 6 months,  learning about hidden corn and cutting suspect items from your diet, if you are still having inflammation/intolerance symptoms, it may be time to  look at more than corn. I would suggest you pursue this with a very strict elimination diet. The philosophy of this is covered in my Advanced Corn Allergy help post.
  7. It’s my opinion that once you have focused on eliminating all triggers, corn and non corn, THEN it’s time to look at gut healing. It’s not to say that you can’t think about it, but generally speaking, gut healing involves a) avoiding foods that damage the gut and b) taking supplements or eating foods that heal the gut. You really can’t focus on eating the *right* foods for gut healing effectively until you know what foods are right for your specific body and intolerances.
  8. Once you’ve been feeling better for a while, consider re-examining your list of trigger foods, especially if your diet is very limited. There is so much going on with you right now that you are bound at some point in this journey to misconstrue the cause of a reaction and cut something you don’t need to.  Once you get yourself into a better place healthwise, I would really encourage you to continue (safely) exploring and learning about what your body can handle and what it responds best to.

 

2 thoughts on “Sick of Being Sick: Letter from a Reader

  1. Hi Travis! The Corn Allergy Girl has guided you well. I am in that facebook group and there is a lot information available there. Really, I just wanted to say that I am impressed with your research and attitude. You are doing well to be where you are at this point in your life; it is difficult to figure these things out! I firmly believe you can and will feel better. The hard part is it really takes some time. Hope to see you on Facebook!

  2. Hi Travis,

    I wanted to reach out because I have been in the same boat for a number of years. Being in constant pain and in a never ending haze really takes a toll on mental health. I know it feels like your alone in all of this because, in reality, probably none of your friends feel like food is an enemy. But as corn allergy girls said, were here! I just recently discovered allergies were a large part of my symptoms after having been to a ton of GI doctors all diagnosing me with something different. In reality, these symptoms can stand alone as other medical conditions too and that’s whats so hard about getting the right diagnosis. I just wanted to say, were right there with you. This isn’t a fun thing to be dealing with and support can be hard to find. Feel free to reach out if you need someone to talk to.

    -Anna

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