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sillyactsue added a topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseAnkle/bone PainMy daughter is consistently complaining of pain in her ankle bone. Could this be gluten or even nutrition related?
Her diet does not include any grain, soy, dairy or egg so I am concerned about what she might be missing. She is taking a calcium supplement but no vitamins. Have any of you had the same experience and if so what did you do for it?
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sillyactsue added a topic in Celiac Disease - DoctorsDoctor Near Arlington TexasWow. It's been a long time since I have been here. You all helped so much when I was battling my daughters father in court when he tried to say she had a failure to thrive. Things went well. I am recently remarried and living in Arlington Texas with my little girl. We have been here for over three years now and I have never found a doctor for her. With the gluten free diet she has been healthy except for the times when, as a kid will, she got glutened.
She has become sensitive to more foods though. Originally the "free" diet was gluten, soy, egg and rice. Now she can not have rice or corn either. She looks anemic and is often complaining of a tummy ache. I have been thinking of taking her back to the doctor in Oklahoma that we finally found who understands food sensitivities but They are no longer taking self pay patients. I need to find a doctor, preferably near here, that understands about food sensitivities. Does anyone know of such a creature?
One problem I am running into with doctors as well is the fact that she has never and never will be immunized.
Today I took her to a dentist. She has some cavaties and I want them taken care of. When I left his office I felt like crying. Felt as though I had been verbal beaten up. His idiotic "30 years of experience" put him into the catagory of someone who thinks he knows everything and that I, who have battled this thing for 6 years side by side with my daughter am certified in knowing nothing. I wouldn't use him now if he were the last dentist on earth but I am still stuck with not knowing where to turn.
We seem to have fallen into an every widening crack because we don't have insurance and because I have enough knowledge to seem "dangerous" to the average doctor.
I can't spend a fortune doctor hopping until I find a good fit. I really hope someone can shed some light on us.......down here....... in this crevice..........anybody?!
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sillyactsue added a topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseTinkerbell Body Glitter And Success At A PartyDoes anyone know if tinkerbell body glitter is gluten free?
DD won it playing pin the tail on the donkey at a birthday party. That was not the afore mentioned success though. The success was how at 3 yrs old she understood why she couldn't have ice cream and cake and she gladly shared her skittles with the other kids at the party. I think she gets it that gluten makes her sick. she just deals with it and keeps playing. That was last week.
Tonight we went to a Christmas party for my work. They ate pizza and cookies. We ate before we came and I brought some jelly beans for her for when everyone was done eating. She was intently watching them eat the pizza, I mean watching like they were specimens under a microscope. She had never seen pizza before. I told her we could make gluten free pizza at home if she wanted. She kind of squealed. A man handed her a piece of chocolate and instead of popping it into her mouth she came to me and held it up for inspection. I shook my head no and whispered that it might have gluten ( I didn't even mention the dairy). She said, "No?" and took it back. she came back to me and asked for her jelly beans.
I know it won't be this easy all the time but I am very proud of where she is with it right now.
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sillyactsue added a topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseUpdateI haven't been here for a while. Bogged down in forensic physchologist, lawyer, 3 year old and work. I had no time to do anything extra but breath. Yes that was an extra. Good news, though. Some of you may remember my soon to be ex-husband was trying to accuse me of neglect because my now 3 year old was not growing. I found a doctor with celiac disease in Ok. City. He diagnosed her with gluten/casien sensitivity. He sent her to an endocrinologist who diagnosed her with intro-uterine growth retardation (probably due to a small or unhealthy placenta). She will always be around the 5th percentile. Gluten/casien prevents her from gaining weight. She has been gluten free and is gaining slowly but surely. With his testimony and with the forensic physchologist testifying that my husband is unsafe around children things are looking much better. We do not know if he will get a few hours a week supervised visitation from now on or if he will lose parental rights all together. Either way the stress level at my house has gone down to a somewhat normal level. Things are looking up. I look forward to being here on the forum again. Thanks everyone for being here.
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sillyactsue added a topic in Celiac Disease - Coping WithDriving Me CrazyI know I have been glutened recently, not sure where or how. I am having all sorts of problems the most disturbing of which is sensitivty to sound. Any one sound seems to scrape my brain. Combinations of sounds are eating my lunch. Dog barking, train going by, my three year old's three wheeler going by on the dining room floor. People talking, everything is very frustrating. I have a lot of demands on me, a lot of stress that has lasted a few years and will last a while longer. It is all piling up. I have thought about seeing someone about depression but their solutions are not for me and as far as counseling goes I have learned through experience that psychologist exist for one purpose, to stick their self diagnosed superiority into my pocket and happily snatch away the food off of my table and extend my bill payments past their due dates, as if I were a peon to be stepped on. Ooohh Doc, you forgot to break my nose while you were climbing up my face. Screw them!
I know that much of what I'm feeling is gluten related. I know this because I am bloated and haven't had pop for a while. I feel almost to pathetic to care about gluten. The thought of getting glutened while I am trying so hard not to is, I guess very discouraging.
I have to work. I can't! I have to cry. I can't!
Soon to be ex who is celiac has been found to be a sociopath. He lives to control in every possible mind tweeking way possible. The judge thinks that in spite of that he is JUST a bad father. Never mind Judge that he has gone to prison for physically abusing his other children and oh yeah it turns out now he is an unregistered sex offender against children. Why can't they just make him leave us alone?! But no, the Judge keeps saying that he will eventually have unsupervised visitation with our daughter. Forget him! Why can't the judge just leave us alone?
Anyone? Got anything?
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sillyactsue added a topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseNeed Opinions About My Nephew's SymptomsMy nephew is 8 years old. For as long as my mom can remember he has had large, painful stools. Recently she was talking to me about it because she is concerned for him. She said she thought he was holding it in because it is to painful to have a b.m. and then when he could hold it no longer he would squeeze his cheeks (sorry it is a gruesome but necessary topic) together while going. Trying to control the pain. He makes a mess and he gets fussed at for it. Not by her.
Mom thought that maybe he was doing it to try to get attention (which he needs). She cited two other family members that did that when they were young. She said they started doing it after a particular family crisis. Different families, diffirent crisis. I pointed out to her that my nephew hadn't started doing this after some crisis but that it had always been a problem and that it became a more pronounced problem after potty training at about age 4.
She said she didn't think it was gluten because his stool isn't like my daughters when she has been glutened. I reminded her that different people have different symptoms and for some it is constipation. She has been encouraging him to try to go once every day. I reminded her that he can hurt himself straining.
Whether it is gluten or not doesn't this sound like a food sensitivity? Especially since he has food sensitive relatives?
My brother has taken him to doctors twice and they were completely unhelpful.
I told her I would ask on here what you all thought. She has him for the summer and she is willing to put him on a gluten free diet to see what happens. I do not have much confidence that she will especially since she has two other grandsons with her for the summer and all three of them would consider such a die-it cruel and unusual punishment.
What do you guys think.
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