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celiac
November 2009 
connections
Posted on Feb 23rd, 2008
by 
Amanda
Amanda
I no longer believe in coincidences. I know this may not seem like a big step for some, but for me it is a huge leap of faith toward understanding. Aware-ness. Open-ness. One-ness. A deep breath in and an affirmation that I know myself and I know my family.
We received the results back from my daughter's blood work. Her allergy panel came back normal on all foods tested. Her Celiac panel came back as negative for having Celiac but positive for having the genetic marker. I was so convinced that we were dealing with an allergy-- and even felt I knew which foods were causing all the distress-- that to hear these results stopped me short. I realized I was no longer breathing fully as I spoke with the doctor and panic started to set in. These test results state my daughter is healthy, but she's not. She's in pain. She may only be 18 months old but she can convey pain pretty clearly. So what now? Thankfully, even in my growing state of panic I was able to tell the doctor we weren't interested in invasive procedures like a GI scan and biopsy. Instead we would step back, try an elimination diet and consultations with our Naturopath. Our pediatrician is a rare breed of doctor (perhaps because she is so young?) who encourages non-traditional-Western medicine. She wants to open a dialog with our Naturopath and be informed of any treatment decisions we make. Even ending the conversation on this positive note I wasn't able to regain control of my breathing. I hung up the phone and slipped down to my kitchen floor, sobbing. Sonya came to me and patted my back. "Mom-me. Mom-me owee?" She let me hold her tight, kissing her and breathing her in until I felt grounded again. I didn't have the luxury to dwell over the situation-- the necessities and niceties of life are too demanding for me to sit on the kitchen floor all afternoon. Not surprising, though, was that I could not sleep that night. I kept reaching back over the past months looking for clues. The longer I searched, the farther I searched, the more I came to see a pattern. A child sees her pediatrician dozens of times before her 2nd birthday and we certainly were no exception. For well-ness checks as well as illnesses. At each check there was always something small of concern. Never pressing as Sonya has always thrived but still present. Most recent was her skin. It's not smooth and soft like most baby skin but rough and raw and pebbly looking. "Oh, that's just Keratosis Pilaris. Genetic. Harmless. See you have it, too." Her sleepless-ness and sleep-crying. "She needs to learn how to sleep without you." Her moodiness and angry outbursts. "She's a toddler and cannot express herself as well as she would like." Inability to drink cow's milk. "Many babies are lactose intolerant." The list goes on. Alone, each concern is so small and each response completely valid. I continued to reach back, searching. When I was pregnant with Sonya I had horrible stomach problems, to the point where eating lost all joy. I was reassured that as long as the baby continued to thrive and I continued to gain weight there really was no concern, just the annoyance on my part. "You probably caught a virus and can't completely heal because your immune system is too busy taking care of baby. As soon as she's out, you'll heal." It made sense so I went about my job of gestating without complaining (too much.) Sure enough, as soon as my Petite was yanked (unwilling) from my belly, I began to feel better. I see, now, that what I was experiencing then is exactly what Sonya is experiencing now. She told me, in a dream, she was coming before I even knew I was pregnant. There are no coincidences. I know now she had other things to tell me about both of us but I wasn't putting all the pieces together as a whole. I no longer believe in coincidences. I'm making the connections and seeing the whole. Because of this, I have no doubts that we will all be better. Shining again, and soon.
We received the results back from my daughter's blood work. Her allergy panel came back normal on all foods tested. Her Celiac panel came back as negative for having Celiac but positive for having the genetic marker. I was so convinced that we were dealing with an allergy-- and even felt I knew which foods were causing all the distress-- that to hear these results stopped me short. I realized I was no longer breathing fully as I spoke with the doctor and panic started to set in. These test results state my daughter is healthy, but she's not. She's in pain. She may only be 18 months old but she can convey pain pretty clearly. So what now? Thankfully, even in my growing state of panic I was able to tell the doctor we weren't interested in invasive procedures like a GI scan and biopsy. Instead we would step back, try an elimination diet and consultations with our Naturopath. Our pediatrician is a rare breed of doctor (perhaps because she is so young?) who encourages non-traditional-Western medicine. She wants to open a dialog with our Naturopath and be informed of any treatment decisions we make. Even ending the conversation on this positive note I wasn't able to regain control of my breathing. I hung up the phone and slipped down to my kitchen floor, sobbing. Sonya came to me and patted my back. "Mom-me. Mom-me owee?" She let me hold her tight, kissing her and breathing her in until I felt grounded again. I didn't have the luxury to dwell over the situation-- the necessities and niceties of life are too demanding for me to sit on the kitchen floor all afternoon. Not surprising, though, was that I could not sleep that night. I kept reaching back over the past months looking for clues. The longer I searched, the farther I searched, the more I came to see a pattern. A child sees her pediatrician dozens of times before her 2nd birthday and we certainly were no exception. For well-ness checks as well as illnesses. At each check there was always something small of concern. Never pressing as Sonya has always thrived but still present. Most recent was her skin. It's not smooth and soft like most baby skin but rough and raw and pebbly looking. "Oh, that's just Keratosis Pilaris. Genetic. Harmless. See you have it, too." Her sleepless-ness and sleep-crying. "She needs to learn how to sleep without you." Her moodiness and angry outbursts. "She's a toddler and cannot express herself as well as she would like." Inability to drink cow's milk. "Many babies are lactose intolerant." The list goes on. Alone, each concern is so small and each response completely valid. I continued to reach back, searching. When I was pregnant with Sonya I had horrible stomach problems, to the point where eating lost all joy. I was reassured that as long as the baby continued to thrive and I continued to gain weight there really was no concern, just the annoyance on my part. "You probably caught a virus and can't completely heal because your immune system is too busy taking care of baby. As soon as she's out, you'll heal." It made sense so I went about my job of gestating without complaining (too much.) Sure enough, as soon as my Petite was yanked (unwilling) from my belly, I began to feel better. I see, now, that what I was experiencing then is exactly what Sonya is experiencing now. She told me, in a dream, she was coming before I even knew I was pregnant. There are no coincidences. I know now she had other things to tell me about both of us but I wasn't putting all the pieces together as a whole. I no longer believe in coincidences. I'm making the connections and seeing the whole. Because of this, I have no doubts that we will all be better. Shining again, and soon.
Access: PublicTagged with: family life, celiac, toddlers, pregnancy, keratosis pilaris, dreams, naturopath, coincidence
Amanda if it helps children usually grow out of these health problems. Good luck with the homeopath, they work in a holistic way, which means looking at the total person, in the context of family and environment.
Amanda, I'm wishing you well. I love the transformation that takes place in your piece above and that you so clearly articlate is happening for you now. It sounds like a huge one!
A big loving thank you to both! I'm not sure why it's taken us so long to see our Naturopath-she has helped out son immensely in the past 6 months– I know she will have a similar plan of healing for Sonya. And, yes, this transformation is big– for all of us. Sonya woke up last night only once which is a big boost to our happiness factor (lol!) and a gentle affirmation that we are moving in the right direction. I know there will be setbacks as our learning curve is so great, but we are on our way and I am feeling remarkably positive about the journey considering that just 3 days ago I was sitting on kitchen floor sobbing in despair!
Thank you for your support, my dear friends! :-*
Hi Amanda, I had a lot of similar challenges with my daughter when she was an infant. As you saw, she's a healthy and vibrant young lady now. One thing I might suggest is Reiki. I've been studying it for a while now, and it's the best thing for helping people heal from unexplained (and explained) dis-ease. If you take a Reiki I class, you will find that you can lay your hands on her and help ease her right away. It's really quite amazing.
Now that's a good idea. A quick Reiki story – I had a massage therapist who was also a Level II Reiki practitioner. He would end each of my appointments with some healing energy wherever I directed or he felt it was needed. One time I had an ear ache getting started - unusual for me - and I didn't mention it to him. At the end of the session, he focused on my head to the exclusion of everything else and I swear the pain was gone within minutes.
I say that not to persuade you, but to remind myself that there's something to Reiki, something to be explored for myself. Thanks for bringing it back to my consciousness, Mark!
I live in the middle of no-where LOL. Any ideas where I may find a class?
I'd do a search-engine search, type Reiki plus your zip code. I bet you'll be pleasantly surprised.
In the meantime, I'll send Sonya some Reiki tonight when I do my evening practice.
A deeply heartfelt thank you!!!!!!!
“pleasantly surprised”?? more like deeply humbled! A class next month, not far from my home. Dr. Meta Porter? I will call 1st thing tomorrow morning.
And, yes, I've learned my lesson! I love my town and all who live in it, so I should treat it with more respect! (no more references to “no-where”)
It is truly a pleasure. As Ralph Waldo Emerson once said, “It is one of the most beautiful compensations of this life that no man can sincerely try to help another without helping himself.”
Try it first. Make sure it works for you and Sonya.
Wow, Amanda! all of this chattin' has landed you a spot on Gaia's homepage “Hottest Blog Posts” box!
Amanda, as a mother I know how you're feeling with Sonya having pain; it's almost worse for the mom. And I am so happy to see the path you are taking. My children came into my life, and opened me up to regular meditation, Reiki healing and wonderful awakenings as well.
At one stage, I too realized that their illnesses were meant to help them meet certain people; or show me another path and so on. If you like, you can ask for healing from the Distant Healing Network as well.
Heehee, my 15 minutes, eh, Halal?
Meenakshi, thank you for the link to Distant Healing Network. From this morning's perspective I will need extra help and love sent our way. It was a difficult night and I find myself slipping back into the old (tired, impatient, grumpy, frustrated) me. Breathing should not be so difficult!
Thank you all again and again for your kindness and love. As your student, I am listening!
Amanda, be gentle with yourself, lack of sleep can affect anyone adversely, does your daughter have a daytime nap, try and get a rest then?
Ah, well, sleep begets sleep…..so when she feels well she sleeps well. Not so last night or today. BUT Mom is prescribing a long warm lavendar bubble bath tonight– for everyone! LOL
Dear Amanda,
You story here is similar to those I have heard over and over again, the only difference is, you and Sonya have been lucky enough to find out about that genetic marker for Celiac disease, at a very young age.
The average diagnosis time for most, is eleven long years. Eleven years of unexplained sickness, misdiagnosis and avoidable suffering.
The skin rash is easily explained and I won't be surprised to hear that it went away with the elimination of the protein gluten. It sure sounds like Dermatitis Herpetiformis
http://www.csaceliacs.org/dh_defined.php
I am happy to know that one more person is one their way back to a healthy and happy existence :)
With much gluten free love,
shirley
Thank you, dear Shirley! Yes, her skin is looking better by the day. Her cheeks and legs are nearly smooth again. It is a joy to see her pretty face so healthy looking again– and to not have perfect strangers ask me “what's wrong with her skin?”
I'm so gratefull to Gaia and everyone here! How lost I'd be without all of you loving souls…….!
Amanda
Someone has already pointed out dermatitis herpetiformis (DH). I diagnosed myself with a gluten intolerance after 10+ years of misdiagnosis. Granted, I have multiple diseases and and on multiple medications, so the docs did have some trouble. My now-husband found a description of DH online and said I HAD to read it! My skin was in such pain - like the worst sunburn with a mix of poison ivy - sometimes I could only find relief by bathing in a tea tree oil bath. I went gluten free and got better over about 3 days. I went to a doc, told them I went gluten-free, they did a blood test and found very low titers of the antibodies for celiac in my blood. Sent me to a gastro for a biopsy who told me I had to go back on gluten in order to have celiac test - the biopsy. I asked - what will your treatment be if I am positive for celiac? They said they would tell me to go gluten free. I said no thank you to the biopsy. So, I don't know if I have celiac, but know I am substantially better gluten free. The whole reason I have rambled on is because you are dealing with your toddler who can't vocalize, but you know is feeling bad. I am so glad that you, as a mother, tuned in to your baby! I can tell you my skin would hurt so bad I would cry. I also had oozing lesions that the doctors could never figure out the cause. I had deep gutteral pain at times that I would double over and couldn't stand. I was always dumbfounded when the docs would say I was OK because my blood test said so. Then tried to force me into their “experiments” and get me to go back on gluten.
Someone already stated reiki can be of value. I completely agree. I have also found that cranioscral work is helpful as well. I dare say that there is some energy work that you can do on your own - it is amazing what role intent can play -particular on the part of a parent. Also, if there are any reiki masters reading… they may launch into some remote reiki or whatever it is called. (my mom is a reiki master-so I know only enough to be dangerous)
Good luck to your little one, and follow your intuition in helping her!
Thank you for sharing your experience, tc! And I am ever, ever so relieved to know you are no longer in that amount of pain! I'm not sure if Sonya has DH– her skin doesn't look anything like the pictures and only slightly resembles the descriptions. My own (non-medical, but as you said, certainly motherly) opinion is that because her insides were so irritated she couldn't absorb enough vitamin A. One treatment for keratosis pilaris is periodic megadoses of vitamin A. While Sonya was still nursing I started taking a vitamin A suppliment and we both saw great improvement on our skin. As soon as she stopped nursing her skin worsened. Not long after her overall health declined rapidly and the bumps and redness on her skin spread to cover 50% of her body. She has been gluten-free (with only a few dietary “oops”) for 10 days now and her skin looks better almost hourly. Like you, at this point it doens't really matter what the condition's name is, we are just thrilled to have our happy baby returning to us!