Saturday, July 18, 2009

Odd Celiac Duck

I am the odd duck

Ugly squawking thing

I ask for help but no one understands because I look fine.

I see that I will have to fend for myself, I am normal after all

So I sift all the messages, yet always seem to be lacking something

I want to but I cannot run

Everything irritates me I am dizzy and uncertain, there are always tears

I feel as though the swirling darkness will swallow me whole, I wish it would

So I borrow the ideals of others to be thin

Success is heady

Yet with each healthy muffin that I eat I find myself disappearing


Then why can I not lift this weight?

Each step becoming heavier than the last, and my tongue feels leaden in my throat.

Yet what could be wrong? I am doing everything right.

I lay down and close my aching eyes.

I am being swallowed up in nothingness, weak light, weak breath

I feel nothing, no pain, nothing

Slipping away I reach for a pen to write a last note to my sister.

I cannot eat, so I don’t

In the morning I awaken

I don’t eat what I usually do, only fruit

Then fruit and vegetables

Fruit, vegetables and meat

Steamed veggies, seared meat, raw milk, and rice

I can breath, I can think, I can feel

I can feel!! I can run!!

The sky is so blue, the mountains so green, it is beautiful

I feel vibrancy, I feel life flowing through me and in me from my head to my feet.

Joy! I am alive!


  1. This is about the Celiacs disease which has messed up my life. I suffered from anxiety, depression, uncontrollable crying, bloating, stomachaches, gas, constipation, dizzyness, ringing in my ears, myopia when in open spaces, unexplainable weight gain and I really could not run (I am still trying to train my body to do it)I really did not suspect the bread that I ate, my shredded mini-wheats, raisn bran, cinnamon rolls, even licorice! Yet it all makes sense now.

    I had to throw out everything, including a lot of beliefs one of which was that I knew what I knew and that doctors and the general media knew what they were talking about. I am distrustful of both.

    I am slow to judge, after all what I thought I knew was wrong, what I think I know now may be wrong as well.

    Everything hangs in the balance of trial, and I have tried a lot of things. In some ways this attitude is unnerving, but in other ways liberating.


  2. I feel so sorry for you Strawberry girl, the very things you enjoyed was making you ill.
    I sincerely hope you will find a solution and will be able to enjoy good health.
    Good luck.


  3. wow what a write. isn't it funny how they say things happen in life for a reason, or people come into you life for one reason or another.
    Short but true, My son finally brought home his girlfriend to meet us.

    When I found out she is stayin for dinner, my son said she cannot eat this, nor this, or that, or this, and eggs are out of the question. She has Celiac. I said OMG I do not know much about this disease only a friends sister and daughter have it.
    I spoke with her , she filled me in on allot and then I googled to read more. I went to the market looked at the Gluten free stuff there was not much, but what was there was like double the price. I thought OMG why is it we have to pay more for less..
    This young girl of 23, told me when she was 10, she kept being sick and then starting vomiting until she has lost 30lbs ended up in the hospital for awhile.. Once she started to take out of her diet all the bad things for her, she felt better , gained back her weight, now she does modelling, beauty pageants, etc.
    I like you SG, ask ? how can they say one day this is bad for you, than a month later NOPE it's all good.. I who suffer from a bowel disease is learning the goods and the bads, one day at a time. I know what some foods can do to me and its not GOOD.
    Goodluck with it. How long have you had this? maybe I /we can learn from one another

  4. SG, did you recently find out it was celiac disease? I'm not sure if it would be easier or harder to discover this later in life. You write it beautifully, hauntingly. I hope today is a better day.

  5. Annie-I think your thiking and attitude are outstanding in this post. I see you standing tall and smart. I, too, hav given up my trust of doctors and such. Hang in there! ~rick

  6. Thank you all so much for the response.

    Inky, lets chat

    I did just recently find out, about 2 years ago and my family thought I was nuts! I was trying to figure out how to be healthy and save money so I wanted to be able to cook things from scratch. I started to make bran muffins because they were supposed to be healthy. The more that I made them the weaker I got and the more bloated. I was going to help my dad with his garden, but I got to a point where I couldn't even lift my groceries much less have the energy to help him. I was actually having an episode of anaphalactic shock, ironically I didn't go to the hospital because we didn't have insurance, but I don't think they would have been able to figure it out anyway. The two doctors that I did talk to at that time did not figure it out, neither did any of the doctors that I went to about my many symptoms. I actually did not know that there was something wrong with how I felt when I was growing up I thought it was normal, that I was inferior or something... It was my friend who has studied a lot about health who directed me to a Gluten free diet. What was hard about the whole thing, besides not being able to eat what I wanted to, was that my family thought I was doing this as a lark. It hurt my moms feelings that I wouldn't eat, this, or that, or that. I hated how that felt, I didn't want anyone to think I was judging them but the very fact that I wouldn't eat a lot of what they ate made it seem like I was judging them. I had a blood test done to see what foods may be causing me trouble and a stool test to see if I really was allergic to gluten, both tests came back with a lot of answers. This was done at my expense through two independant labratories. This was my justification, yet it is still difficult for my parents. My brothers and sister all could benefit from knowing if they have this problem but they don't really want to know, so I don't push them. My older brother has Autism my younger brothers have ADD, and it is related. In fact I had many of the symptoms of Autism when I was little but I guess I fought harder to communicate them my brother, and he has been medicated (something I am not too sure was good or not). One thing I am really glad about is that knowing what I should eat sort of liberates me, I feel a lot better and I know the parameters that I can work with for what I should cook and such. So I am starting to be able to cook a lot of things that I used to eat, but with different ingredients, luckily I can eat eggs which makes cooking easier. They do have an egg substitute though if I couldn't. The thing that I am most grateful for is that my courage to find out what was wrong with me helped my sister in law find out what was wrong with my neice Arisa who had had problems with bloating and diarrhea ever since she was a baby. Then because Arisa had the same problem (in reverse I get constipated) my mom and family have had an easier time accepting my "pickiness." Plus, because people know about Arisa, they have asked Sarah about it and several other mom's that she knows have found the disease in their children and their children are being helped. To me, even though this has been hard and embarrasing, it has been worth it to have questioned and fought for answers. ;D

    Thank you all again for the response.

  7. I needn't say much about the impact of this piece. You've done well in delivering the discomfort. And, then, is your optimist attitude that I admire. Now, that alone is enough to cross the tallest hurdle. Good luck!

  8. This is a powerful poem. It really emphasises your struggles, and I'm grateful that you finally get to feel the vibrancy of life.

  9. SG, I never understand people when they get offended or pissed of when someone does not eat as much as they want you to, or you eat something different. I was brought up in a large family who had likes and dislikes. Mother always had us try things, if we did not like it, she made something we did like. No fuss no anger.

    When family won't understand it makes it even harder. It sounds like you have had your trials, and now I can understand many of your writings.

    I feel bad even today when my son who loved carrots as a baby, when he got little older he would not eat them. I thought it was just an act he was putting on for his little sister who would only eat what he ate, or not eat something he would not touch. I made him eat them one day and he tossed them up. My son still remembers that and I really hurt knowing i did that , just one time.
    Foods that are totally yuck one week may be just the coolest next..

    I have since found out this past few weeks, chatting with my sons GF, there are 1 in 133 persons in Canada are affected by celiac disease. At present there is no cure, but celiac disease is readily treated by gluten-free diet.

    Today's processed and packaged foods have many hidden sources of gluten which can be unintentionally ingested. Particular care should be taken in the selection of soups, luncheon meats and sausages, I am now one who has become MORE aware of reading labels and asking questions on whats this made of. BUT I will not just rely on what I am told.
    I am reading more on the gluten free diet, not just to help my son's GF but everyone.As a person myself with bowel dissease, I know how my body reacts to certain foods. It is so dammed frustrating haveing to eat no more than 2 foods a day for a week and log the reactins to each one until we pinpoint the ones that are the bad foods. With Celiac I have learned that the intestinal lining becomes damaged.

    I know sons GF has learned to live with this CD now for 13 years, she has a very positive attitude, knows what she can and cannot have, she just said, I am not missing out on things, I can still have many of the things I like just made differently, I am just happy we found out what it was and I am learning that I Know that my body feels and not rely on other people making me feel different.
    keep in touch and GOODLUCK.. I will be praying for you, I know soon you will find life is going to be much pleasant for you. SMILES