When It’s All Not Enough

After over 10 years of almost debilitating pain for Superman, we finally got some answers. 10 years of being brushed aside by our conventional doctors, them telling Superman he was “exaggerating things” and that he “just needed to eat more fiber” and he basically needed to “toughen up.” We did eventually get a Celiac diagnosis through our conventional doctor, but only after Superman insisted he be tested (since she consistently told him he did not have Celiac since only 1% of the population has it). Her advice? Remove gluten and you’ll be fine.

We were originally ecstatic that he finally had proof that something was wrong. We had a honeymoon period of weight gain (he is 6 feet tall and weighed a whopping 130 pounds), and a small reduction in symptoms, but after a few months, he plateaued and even worsened. After going back to his regular doctor multiple times, he was told he must be getting cross-contamination somewhere and that all he had to do is cut out gluten and he’d be fine. Believe me–he was not getting gluten. As soon as he was diagnosed, I removed any gluten items from our home, and he did not eat out. I was anal about it. So then, his doc said he must have IBS. Yeah, thanks doc. You have no idea what’s wrong with him, so let’s just categorize him with something that you have no cure or treatment for. Her solution was all about treating a symptom…indigestion? Take some Tums. Blood in stool? Eat more fiber. Weight loss? Eat more food…especially whole grains. Intense intestinal pain? Well, don’t eat spicy foods. It was never about figuring out why Superman was experiencing symptoms, merely masking them.

A homeopathic doctor finally diagnosed him with dairy, wheat, soy, corn and goat milk allergies and told him he may have other allergies as well. This was a huge blow, but at least we felt like there was something we could do to help him. (I will add–I was very skeptical of this whole “food allergy” thing, since I had never known anyone with food allergies, and all conventional wisdom made food allergies sound bogus.) I started researching food allergies and discovered that many people with Celiac developed other food sensitivities as a result of “leaky gut” and the issue of food particles leaking into their blood stream. I read “The Paleo Solution” by Robb Wolf and decided our whole family would revamp our diet. We cut out all dairy, soy, grains and sugar.

I desperately wish I could write that Superman was healed. I wish I could say that our drastic dietary changes made everything go away. They did make a lot go away: my arthritis, neck pain, sleepless nights, fatigue; our son’s asthma, allergies and many behavioral issues; many many of Superman’s symptoms. But still, still some of his symptoms have persisted, even now, two years later.

I am a big believer in the power of prayer. Last year for Lent, I decided to get up a 1/2 hour early each morning to pray for Superman’s healing. I truly believed he would be miraculously healed. He did improve, but again, he wasn’t healed completely. I felt defeated, I’ll admit. What else could we possibly do?? This poor man had eliminated nearly all foods with the exception of meat, veggies, some nuts and a little fruit (a blood test of over 150 foods revealed that his autoimmune system was in overdrive and was reacting to almost everything, including spices, sugars from fruits, potatoes, eggs, and many, many other things).

Don’t get me wrong–Superman has a lot more good days than he did before. But still, out of the blue, his symptoms will resurface and once again we’ll feel defeated.

It’s frustrating. It’s tiring. It’s saddening and painful and I’m not even the one going through it. And I’ll admit, as much as I enjoy cooking and coming up with new creations that will give Superman some variety, I wish I could put curry powder on some chicken and not have to worry about how he’s going to physically react. Or be able to just order take-out and sit and enjoy it as a family instead of having to cook separate meals. Some days I feel like there needs to be a support group for wives (or husbands) of autoimmune/food allergy sufferers.

So, where does that leave us? Right where we are. We’re here, in the middle of it all. Superman has more good days than bad days now, and believe me, we appreciate the good days like nothing else. And despite the setbacks and frustrations, I’m thankful he’s here and that he’s alive. A few years ago, he was ready to die. In fact, he was so sure he was going to die, that he got all our affairs in order and made sure I knew exactly what to do in case of his death.

We’ve realized that Superman’s health is like a puzzle. We are constantly discovering new “pieces” to fill in toward his healing. Vitamin D deficiency was a big piece of the puzzle, and once we figured that one out, we noticed a decrease in some of his symptoms. (*Edited to add a few more “pieces to the puzzle”: the discovery that he has adrenal fatigue, absorption issues, enzyme deficiency so he can’t break down foods, and a host of other issues that can be somewhat healed by supplements have each been other notches in his health belt buckle) It used to be that he couldn’t even run a 1/4 mile without feeling completely exhausted. Now, he runs nearly a mile every day and actually feels good afterward.

Although I don’t have a miracle story to share, I still have the hope that one day I will. I am hopeful that at some point, I will be able to write that he is finally free from his pain. In the meantime, I’ll cook good food (bland food for him!), and continue to pray for his healing. I am looking into Nutritional Therapist training programs where I can go to learn even more, and possibly find pieces to the puzzle that may eventually lead to his healing. I love Superman more than anything else on this earth. I love my kids, too. But that man is my soul mate and my best friend. I will do everything I can to help find that final piece of the puzzle!