Elimination Diet Part Two: Seven Years Later

Hippo quote

I have known for a very long time that I need to be completely gluten free, to the most minute degree. Although I was never diagnosed with Celiac disease, I have the same level of sensitivity. It now makes me obviously and incredibly sick, however for most of my life I had no idea that gluten was bad for me.

How is this possible? Well, according to some reading I’ve done, when you are first introduced to a substance that is bad for you then yes you get sick. But then you quickly climatize to it, although it is still doing a lot of damage. Like how cigarettes make you sick when you first start smoking them, but you get used to it, and although it is doing a ton of silent damage you don’t really notice. Symptoms gradually get worse and worse, until one day you body screams enough, and collapses. With cigarettes that may be increased sinus infections, allergies, headaches, leading eventually to emphysema and cancer.

With gluten, I had no idea the myriad of vague health issues I had was related to it. I thought everybody had headaches 4 or more days per week. I thought it wasn’t unusual to get migraines on a monthly or more basis, since there were several people in my family who had this. I was taking ibuprofin almost every day and had no idea that the chronic pain, mostly in my head, was not normal. A friend tried to tell me, but I just brushed them off and didn’t really think about it.

Although I could “write” on my skin, scratching with medium pressure would cause swollen red lines because of the high level of histamines in my system, I thought it was just some weird random fluke. I never connected it to the fact that it really hurt to get my teeth cleaned because they were so sensitive, nor to the fact that rain to me felt like little cold needles. Nor to the fact that I was always so cold, and that once cold it was in my bones and took forever to feel warm again. I thought it was just cold out or that other people didn’t like talking about how much teeth cleaning hurt.

I was tired all the time, but hey, I thought, who isn’t? I frequently got super cranky but I thought it was just because people were being especially stupid that day. I had a cold or the flu once or twice a month, which I knew was more than other people, but I thought I had just inherited a bad immune system from my mom who was also sick frequently. (Did I mention that food intolerances are hereditary?)

NONE of this is normal.

I know this because I finally got sick of being sick and was finally willing to do the elimination diet, found out that gluten is my kryptonite, and have been hypervigilant to keep it completely out of my life.

From what I have researched, the ONLY way to know for sure what you are allergic to is to do the elimination diet – it is the “gold standard” according to my doctor. The blood and skin scratch tests are not very accurate. I have read that they are now finding that there are antibodies (allergic response) that develop in the bowel that never make it into the blood. If you are serious about getting well, you must do an elimination diet. (And of course, consult your doctor first! And hopefully your doctor is one that actually understands elimination diets. If you don’t have one, get one)

I am doing much much MUCH better now that I have completely eliminated gluten, in even its tiniest forms (such as the evil maltodextrin and “natural flavors”). I only eat at places that understand celiacs and have strong protections in place against cross-contamination. And, of course, my own house! Most of the food I consume was prepared by me in my own house from scratch. No boxed food! Few canned or bottled either.

I NEVER get a headache or a migraine unless I have been “glutenized” (ingested some gluten). In a year, the three times I had a cold was when I was glutenized. My teeth don’t hurt now when they get cleaned! You can no longer write on my skin. Many other health problems have cleared up as well.

However, lately I have been feeling kinda tired and off. I know that I am also allergic to corn, sesame and chocolate (yes, chocolate). I have been wondering if there is something else that is slowly poisoning me. I have my suspicions about dairy and the nightshades, especially potatoes and tomatoes (sob!).

My spouse has been thinking that maybe she has allergies too and has been wanting to try the elimination diet. Her mom recently was confirmed with Crohn’s Disease and is thinking of doing one too.

So here we go, Elimination Diet round two!

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Happiness and love

After a grueling two and a half weeks of struggling with gluten-induced symptoms, I am finally remembering what it is to feel good.

I’d forgotten.

The last 2.5 weeks I’ve been exhausted, in pain, disoriented, and depressed. I’ve felt so bad I missed quite a few days of work, and been lying comatose on the couch, with only ibuprofen and a heating pad for company. The days I have gone to work, it’s been such a struggle to get out of bed and get through the day. In a rather dramatic moment of journaling, I likened it to dragging my broken body along the ground by the bloody stumps of my fingers.

Those of you who struggle with unseen chronic illness know what I mean.

This holiday season, it deeply hurt my heart the degree to which some family members dismissed my illness as being all in my head or said nasty things behind my back. I still feel quite sad and upset by it.

But other family members were extremely supportive, and actively sought out ways to help keep me safe, without my even asking. Even though it would have been easier transportation wise to have Christmas dinner in Seattle, many drove 60 miles so we could have dinner together in my house – the only place I can safely eat right now.

My partner has been extremely supportive, organizing the dinner at our house. She regularly goes out of her way to make sure that I am safe from being poisoned by gluten. She sees first hand what it does to me, how debilitating and painful it is, and does everything she can to make sure I don’t get sick. She still eats gluten at other places but washes her hands and face before leaving, and brushes her teeth when she gets home. She is vigilant in the shopping, making sure to read the labels each time. She watches what I eat, and if she has doubts she double checks with me if I’ve made sure its safe. She doesn’t hold it against me that I can’t go out to eat. If she wants to eat something with gluten in the house, she always asks first to make sure I won’t be tempted and then takes precautions, like spreading out a large towel that she eats over then puts immediately into the washing machine.

That is love.

My co-workers have also been very sympathetic. They too see how terribly gluten affects me. Normally I laugh and joke a lot, but the last few weeks I’ve been a wreak. They have really gone out of their way to try to make it safe for me. They rarely bring anything with gluten into our area, and if they do, clean up immediately. They have been genuinely wanting to know how I am and been quite understanding about my missing work recently.

Today, my partner picked me up after work. As we were driving home, the sunset was glorious and we drove to a point we could see it better. The capitol was lit up all firey and the clouds were gorgeous gold and pink. We kissed and watched the sunset. She loved my cheese and green onion scones I made yesterday for the firs time, so we ran to the store to get more ingredients. She dropped me off, and went out to play poker with some friends.

Happy to have a night alone and clean kitchen in which to play, I put on Lie to Me (my favorite show right now), and made scones. Gouda, green onion, and smoked paprika scones. Rather than spending the energy on cooking dinner, I just ate baked tempeh with avocado and ketchup at the kitchen counter. It felt so decadent! Then I curled up on the couch with a lovely cup of tea, and watched more Lie to Me. When the timer went off for the scones, I checked the oven…and it was empty! I’d forgotten the scones in the freezer – oops! But I was able to just laugh, and let them thaw a bit then popped them in the oven. I took a shower and I even found myself singing! My lovely girlfriend came home and we shared the first bites of scone – a new recipe and it was delicious!

I am thankful for these things. People, including myself, that care enough to protect me from gluten. Feeling good enough to actually enjoy a shower. A simple evening making scones.

This is happiness to me now.

Feel the Love – for Jennie and Mikey

For those who don’t know, one of the food bloggers, Jennie Perillo, who is an integral part of that community suddenly lost her husband and father of her two girls to a heart attack. In the wake of this, as people were struggling to find something to do and Jennie asked that people make a peanut butter pie. Thousands responded and it made major news. Now, as Shauna of Gluten Free Girl writes, she is struggling to be able to keep her house and support her girls. A new organization has been started called Bloggers Without Borders. They have a beautiful account of what Jennie and her two girls have undergone, and a way to donate if you should so choose.