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sarahjo

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Latest Celiac Disease News & Research:

Everything posted by sarahjo

  1. sarahjo
    Does your medicine have gluten in them? They say sometimes it does get worse, but i don't want to say that to you, with all your other medical problems i am a little earie that it isn't something else, how do you feel now?
  2. sarahjo
    our celiac child has a dog, we put the food into container, she carries the dish and tries very hard not to touch it. As far as the dogs licking her, would it help to give them their food and then some water, it will rinse of some the residue...we go to the allergist next week because she keeps breaking out into hives, i wonder if it is from that? umm
  3. sarahjo
    Hi I haven't been on here for quite awhile....I have a daughter that is gluten-free, (and one with celiac and cf) Our school system isn't much help. You have to have a doctors note to provide certain snacks. We just send a container with fruit snacks in them, on holidays we supply our own treats for her. She takes her own lunch daily. We bought a good...
  4. sarahjo

    ARCHIVED I Am Done With Dr's

    sarahjo replied to Warrior Woman's topic in Doctors

    BEEN THERE DONE THAT!! good for you. you know your body, we have been down the same road with our daughter..she has a feeding tube, asthma, iron defiecincy, and sleep apnea. we didn't listen to her body before listening to the doctors. you will definently find lot of support here, good luck
  5. sarahjo
    we use to have our daughter the garden of life probiotics, she did good we just continued them until her bowel started to average out, (you could see stuff in her diaper, once that started to disapeer we slowly stopped using it,) sounds gross i know...don't know if it will help you, but i do believe they work we could see the bad in her diaper...if they...
  6. sarahjo
    I use to be bulmic and i had to have one tooth pulled (in the way back) because the acid deteroted away. i use to binge and purge alot, so you shouldn't have to worry about that. just check with you dentist, they can help you with them. as far as the reflux the doctors had my daughter go back and wheat for about 5 months (for testing, which she got to...
  7. sarahjo
    hi i have daughter that gets neocate plus through her g-tube. she seems to tolerate it well, i have never tried the other kind. we were on nutramigin, but it contains milk. (she is allergic) it is very expensive. well i wish you good luck.
  8. sarahjo
    my daughter doctor finally agrees that my 2 year old has it, he has no proof, just that she improved on the diet and failed with out it, i mean physically failed. she has a feeding tube, iron deficiency, asthma, and sleep apnea. on the diet the only thing was the tube until she was fully norished again. it took me a year to find a great doctor. when...
  9. sarahjo
    i know how you feel. it took my aunts over a year to even consider that katarah could have celiac, i stuck to my guns with the idea and now that she does they are trying hard to understand. my one aunt even thinks she has it. (I laugh to myself because she gave me the hardest time, she complains about it, but yets eats bread....) i have said that gluten...
  10. sarahjo
    we thought that our 2 year old might have it, but when she is milk, wheat, gluten free she improves dramatically. the medicines for add have nasty side effects. there alot of books that explain the relationship between the diet and add/adhd. to be honest i wouldn't give my kid the medicine before trying the diet. you need to do what is best for you and...
  11. sarahjo

    ARCHIVED Finally A Great Doctor

    sarahjo replied to sarahjo's topic in Doctors

    We are so lucky to have a great doctor, but don't get me wrong all the other specialist don't agree. but as long as out main doctor does, that is all that matters to me. katarah has already started to feel a little bit better, not a whole lot but better. I am exhausted, drained, yet at the same time relieved. you probobly never hear someone say yeah...
  12. sarahjo
    hi i don't know if i will be any help but a few years ago i was bulmic, and during high school i had 5 friends committ suicide in 6 months, so needless to say I tried it to. first of all you are doing what my mother did, is to be there and try to understand. she never left me alone, and always told me she loved me, it drove me crazy, i yelled at her ,...
  13. sarahjo

    ARCHIVED Finally A Great Doctor

    sarahjo posted a topic in Doctors

    my doctors office asked me for advice on celiac, they have done the work and I have been raising a celiac toddler. (They just agreed with me that she has it this week) I have never been so suprised. I put my foot down and never gave up, i knew she had celiac, they tried to prove it medically, but she got sick and sicker before they could get accurate test...
  14. sarahjo
    from what the doctor says her t&A are physically to large. she is very small, and it wouldn't suprise me. we go to see and ent next week. are all these problems normal with celiac? i had brought my aunt with to support me, and since she was there, the doctor looked at me and said no problem start her on that diet. i believe he is waiting for no...
  15. sarahjo
    I went to the doctor today, he agreed to put katarah on the Gluten-free Casein-free diet. i think he doesn't think anything will happen. he didn't want to perform the biopsy. he had a pulmnologist come in and speak to us. now we are also treating her for asthma, iron defiency, and we have sleep anpnea test on friday, we are going to remove her tonsils...
  16. sarahjo

    ARCHIVED Mayo Clinic Celiac Center

    sarahjo replied to Eric's topic in Doctors

    mostly all the people in my local support group have seen him, they love him, i guess he is really good.
  17. sarahjo
    they did do a gene test by blood on her, they have been waiting for to be healthy enough to do the biopsy. I have told them that unless she is off of wheat/gluten this isn't going to happen. so we battle the books vs. my child. I have had this gut feeling that she has celiac for over a year now. she is a whole differnt child on the diet, she is happy...
  18. sarahjo
    you guys help so much, my daughters symptoms are failure to thrive (Weighs 23 pounds, will be 3 in 2 months) feeding tube (Unexplained) irritaiable reflux (She had the surgery to stop it, has returned since she ate gluten) muscle pains nonstop illnesses (mostly viral) daily fever 99.0 hospitolized for unexplained reasons (High fever, listless) hurts...
  19. sarahjo
    my 2 year old does the same thing at night. she is in so much pain. I give her motrin, and rub her legs. some times I will put lavender oil on them, it seems to calm her until she falls asleep. I have never had them so I don't know how they feel I just know that she is in pain.
  20. sarahjo
    her doctor said at the first meeting 3 times "SHE DOES NOT HAVE CELIAC< YOU CAN"T SAY SHE DOES!!" he said since there was nothing on paper she doesn't have it. when we found out she was allergic to milk, he said we could still feed her cheese and ice cream, just avoid milk. well first of all she is still on formula through a feeding tube, milk hasn...
  21. sarahjo
    I have a 2.5 year old who has been sick with everything since birth, she has a feeding tube, and she only weighs 23 pounds. she can't hold weight. the doctors investigated me for abuse, because they thought that I wasn't feeding her. I am I doing everything I can think of, we started a gluten free diet for 8 months, she gained over 5 pounds, she was rarely...
  22. sarahjo
    I have a 2.5 year old that is failure to thrive and is on a feeding tube at night. she is allergic to milk, and we have been in and out of doctors and no answer, someone mentioned celiac to me and it fits, I finally removed all gluten from her diet even colors and playdough. she improved and even gained weight. she wasn't sick all the time, then we met...
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