Sunday, September 6, 2009

Our Journey to Gluten-Free Goodness

So Ive just finished making pickles and granola and sweet and sour chicken. all from scratch. (In between cutting up the latest batch of orange coconut soap made by yours truly. ) So what has brought on this cooking goddess frenzy? Why am i no longer a Betty Crockerfan...sauce from a bottle...meals from a packet kinda gal? Well, as of about five months now, our house has been trying to live gluten free. What the heck is gluten? Why are we trying to evade it at every turn?

Gluten is a type of protein found in most types of cereals/grains.Its what gives dough its elasticity and bread its structure. It makes pizza dough rise, gives cake its moist deliciousness, gives puff pastry its lightness. But gluten isnt only found in bread and cakes. Soy sauce - made from wheat. Root beer - malt flavoring from barley. Caramel coloring derived from wheat. Even some lipsticks use wheat as a binder. So as one writer put it - even licking your lips can be poison for those trying to live gluten free!

Why are anti-gluten around here? A year ago, our gorgeous bossy demanding Princess Bella became sick. It showed up first as blister like sores covering her body. They were maddeningly itchy, she was horribly grumpy and less than delightful to live with. We took her to Doctor number one. She said, chicken pox. Okay. That i can deal with. All the other fantastic four have had it. Surely i could take care of ONE baby with the pox!? Three weeks later, the sores were worse. Infected. Pus filled. She was bathing twice sometimes three days a week in oatmeal baths to help with the itching. Drinking phenergan at night to help her sleep. Calamine lotion covered her body.
Enter Doctor number TWO. He said - scabies. I was horrified. How could i have been such a bad mother i had allowed my child to suffer with scabies for this long! She hadher first round of anitbiotics for the infection and we were all prescribed nasty stinking lotion to apply from head to toe. Scabies for those unfamiliar lucky highly contagious. A tiny mite that burrows under the skin and lays eggs. Very itchy. Ugh. The thought crossed our minds - why is it that no one else in the family was stricken with the same symptoms? But Doctor number TWO assured us, it was possible for us to have scabies and NOT EVEN KNOW IT...hmmm. Okay. Can any of you be itchy without knowing it? But we dutifully followed instructions. Twice. Another month passed and still our daughter suffered. Three times we treated for scabies. Enough toxic chemicals to start our very own nuclear dump site. Her condition worsened. She started losing weight. Cried often. Heck if i was covered in sores, I'd cry often too. Then the vomiting began. Diaorrhea.

WE took her to doctor number THREE. He took one look at her and said (drum roll please) : YOUR DAUGHTER HAS SMALL POX. Excuse me? Small pox. Youre joking right? No - small pox. Its another kind of chicken pox. But i thought small pox was a deadly epidemic that wiped out millions and is so contagious that my entire family should be writhing in agony and / or dead right now? And wasnt small pox eradicated? No, he said confidently. She has small pox. She needs some anti biotics. Then it will go away. I went home with my crying baby. Told Darren. Burst into tears and the futility of it all. At the total stupidity of the local medical profession. He put us on the next plane to New Zealand. We saw a local GP first.

To protect the guilty lets call her Doctor number FOUR. She at least being vaguely honest said: I dont know what that is. Lets look at my computer. She then went to a medical site online and tapped in symptoms and read through the list of possibles. (Im thinking - heck lady - ive got broadband...i could tap in that at home and save myself the trouble of paying to come and consult you and your seven years of medical school). She said - maybe scabies Maybe %$#@&^%! ( a long word i cant remember which translated means a childhood skin disorder that comes and then goes and has no cure). She prescribed more antibiotics and more scabies treatment. I said we did that already. She said - but aahhh this is a BETTER scabies lotion, we use it here in NZ! (as opposed to what dumb samoans use in Samoa). We made appointment for dermatologist specialist. Very expensive. Very time consuming process. He has very nice office. He looks at her and is puzzled. Calls in another specialist for a consult. They consult and consult and consult. Could be this...could be that. We must perform skin biopsy. WE go back for biopsy. I have to hold her down while she screams and they take a plug of her skin out. Must wait several days. Must pay lots of money. REsults come back. Indecisive. Dont know. Think it might be urticaria. Fancy name for skin disorder that appears and then goes and no one the wiser.

We go home to Samoa. Her sores at least are not infected anymore. My beautiful princess still looks like she has small pox. Or chicken pox. Or scabies all over her body. Or heck lets go the whole hog and just say she looks like she has leprosy at this point. She throws up more. Cries more. More miserable. More hot. More sores. One Sunday after rocking half through the nite while she cries, i am praying for divine help. Somehow, someone, somewhere please help us to help our baby? I sit in front of computer and cry. I go online and look at pictures of skin conditions. Is it eczema? Is it prickly heat gone haywire? Is it it? Then i see it. A picture of dermatitis herpetiformis. Its a picture of my daughter's skin. Pustule blisters. Itchy. All over the body. I read further. Its caused by a reaction to gluten. Some people with celiac disease have dermatitis herpetiformis. People who have celiac (pronounced: see-lee-ak) disease have a disorder that makes their bodies react to gluten. When they eat gluten, an immune system reaction to the protein gradually damages the villi in the small intestine. When the villi are damaged, the body is unable to absorb the vitamins, minerals, and other nutrients it needs to stay healthy. Celiac is an auto immune disease that basically means gluten causes your body to attack itself.

I read more. The only 'cure' for celiac is to cut out all gluten from your diet. As Darren walks a screaming Bella through the garden, I decide to try it. We are desperate enough to do it. We are desperate enough NOT to ask any more doctors whether its a good idea.Six months later, Bella has stoppd the vomiting. The diaorrhea. She's a fat little Hobbit - big and boisterous. She still struggles with flare ups of the sores - a sure sign we have missed something forbidden in her diet. Its a 24 -7 occupation making sure everything is gluten free. And we still make mistakes. You thought Ricies cereal was gluten free cos its rice? Right? Wrong. Its coated in malt. Malt comes from barley. GLUTEN. You thought shrimp cracker chips were safe because the label said it only contained rice flour and seasoning? Right? Wrong. Obviously the labelling (from China) was a lie because after gorging on a plateful, Bella spends the night screaming and breaks out in sores the next day. Then i discover MSG contains gluten. As does most seasonings on pre packaged foods. WE have to re learn how to read labels. Gluten comes under many guises. It can be 'dextrin', vegetable starch, modified food starch,hydrolyzed vegetable protein... Even BEER has got gluten. ( so definitely no Vailima for Bella!) The best route to gluten free living is making as much food yourself, totally from scratch. Thats the only way to control whats in it.

Since going GF, we have also put our other daughter Zion on the diet. Shes the very thin, 7 yr old daughter who always has a sore stomach, no energy, cries alot, very tired. Its been harder for her to adjust since of course shes older and knows what shes missing! I am fast becoming the queen of new and diverse ingredients and ways to cook. I make a mean vi crumble using soy flour, coconut and brown sugar. The whole family loves GF pancakes made with leftover rice and eggs. The girls week wouldnt be complete without my Saturday bake - tons of chocolate cupcakes using rice flour, corn flour, a sliver of sugar and some healthy filler hidden in the mix...todays bake up contains mashed bananas. Last weeks had grated carrot and some cooked mashed pumpkin!

All in all, there have been rewards for the entire family. We are eating healthier ( whether we want to or not.) We are far more conscious of what we put into our bodies. Its actually more economical to be doing all this cooking as well. And finally we feel like we have some control over the demon disease that has been wreaking havoc and agony on our daughter. No thanks to the medical profession on this one. We have journeyed through chicken pox...small pox...scabies...urticaria...%$#@#*...and now to gluten free goodness. Its most probably a lifelong journey for my 2 daughters. And one where we find everyday how much more we have to learn. I am grateful for being blessed with such a strong and resilient child. I am grateful for divine intervention that sent us the answers we needed when we had reached the absoloute end of the line called hope.

1 comment:

Lukas Eddy said...

How tough is it being gluten free in Samoa? I am planning a trip to Samoa, but I can't find out if it is friendly for gluten-free diets...