I have finally figured out Alyssa's problem. Gluten.
We have several acquaintances who are either gluten sensitive, have Celiac, or have children who suffer. In random conversations we would talk about their symptoms and I started to wonder if that could, maybe, have something to do with Alyssa's health issues. Then I started to research it on the Internet.
Yikes!
It is like that scene in 'Tangled' when she realizes she is the lost princess and all the suns she has been painting in her room start glowing around her. They had been their the whole time and she never noticed them until she had the castle's flag. The more I read about Celiac and Gluten Sensitivities, the more her symptoms 'glow'. Things like her untreatable and relentless eczema, allergies, asthma, stomach aches, headaches, legs 'hurting' and more...even down to the fact that is can even cause a delay in hair growth!
What I learned is that celiac is an auto-immune disorder where gluten inflames the villi in your small intestines and causes a wide range of symptoms. With an auto-immune disorder your body can't tell the difference normal body tissue and antigens, so the immune system produces a hypersensitive reaction that attacks and destroys normal body cells leading to those symptoms. And, because 70% of your immune system is housed in your small intestines, it can also reduce your ability to fight illness and make your more susceptible to getting sick. Sound like anyone you know??
Celiac can remain dormant, or 'latent', until activated by an environmental trigger (stress, illness, gluten exposure, etc). Latent celiac disease is commonly known as a 'gluten sensitivity'...not quite as serious on the surface, but causes the same symptoms and has the same treatment. Continuing to eat gluten if you are sensitive to it can trigger active celiac; and if a celiac continues to eat gluten, it can lead to many life-threatening diseases (thyroid disorders, cancer and heart disease...just to name a few). The only 'treatment' is a lifelong gluten free diet.
I also learned the problem is extremely common and often misdiagnosed. 'Gluten Free' seems to be the new trendy diet craze...it seems like everyone is 'coming down' with a sensitivity. But it may not be just a Hollywood trend. The National Institute of Health reports that 1 in 133 people likely have celiac, but only about 1 in 2,000 are diagnosed. Partly because the symptoms are so vague and mimic other common disorders (ranging from fatigue and joint pain to severe intestinal problems and lack of nutrient absorption). Combine that with the fact that, because it is an auto-immune disorder, it expresses differently in each patient; invasive testing to obtain the diagnosis; AND and increase in Genetically Modified foods and you get recipe for growing epidemic. Eek...By the time I am done with my research I may move our family to a farm to raise our own livestock and live off the land ;)
I don't want to put her
through the testing...especially since the only treatment is a gluten free
diet. A formal diagnosis means nothing to me if we see the results. So, we did the 'gluten challenge', a home test for gluten
sensitivities. You just remove all gluten from your diet to see if your
symptoms subside. If they do, it is assumed gluten was the
culprit...if they don't, it must be something else. Not very scientific,
but better than blood draws and intestinal biopsies on a 5 year old.
So, what is gluten?? It is a protein found in wheat, barley, rye, spelt and any derivatives of those products. So...basically everything. And, while wheat is one of the 8 major allergens that is required to be disclosed on a food label, gluten is not. That make it really hard to decipher what is and is not gluten free. Plus, GF food is twice as expensive....we are talk $6 for a small loaf of bread. Regardless, we agreed to put the entire family on a gluten free diet for a month and then re-evaluate.
At first didn't see much of an improvement. Then at the three week mark it was like a switch was flipped. Her skin started healing and, for the first time in years, she wasn't constantly digging at her skin and breaking it open. She also hasn't complained about her legs hurting in weeks and that used to be a nightly issue. I think the longer she is off of gluten and as her gut heals, the more benefits we will see. And, when we went gluten free, Dan saw major benefits too! The eczema he has had for as long as he can remember started healing and his 'ibs' problems have pretty much disappeared. All the years up stomach issues that the doctors could never find an answer for...crazy.
It is a little disheartening that we have been see three different doctors (our pediatrician, an allergist and a dermatologist) for her since she was 10 months old for these issues. Not one of them put it together and suggested trying a gluten free diet. They did their best to treat the symptoms...but that's not enough. Just treating the symptoms wasn't fixing the problem. Something is causing those symptoms...her body is not doing what it was designed to do. Without treating the source of the problem she will never really be healed.
Here is the stuff I initially pulled...just out of our pantry.
There is definitely a learning curve to grocery shopping and cooking gluten free. But, I hear it gets easier everyday. Alyssa has been so great about it and her teacher has been an awesome support, which has made it easier to transition at home and school. She and Hannah both make sure to ask that everything is gf before they eat it ;) In fact, we are all adjusting fairly well. It's hard, but it hasn't been as difficult as I thought it would be for our bread loving family. The most difficult part is eating out (Chipotle and Z Pizza have become our 'go to' restaurants of choice...even more now) and going to friends and family's houses. It just requires more planning and preparation on my part. Thankfully, I have some great friends to help me and we are figuring out this thing together. I am just glad to finally have an answer!
