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About deelind

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  1. deelind

    Tired Of Doctors/tired Of Testing

    SOunds exactly llike what I went through with my son this time last year- first we did gluten and dairy and saw some changes it wasb't uhtil we did complete elim diet that we saw big changes and then not again until we increased his vitamins- his vit a and e and d were all too low- been on elim diet since april- big jump in speech after we increased vit- google celiac and apraxia and there is a new research acticle just published with similarities to celiac, food sensitivities and speech issues- we did the MD thing- we found a holistic practitioner whp started us in the right direction- we saw regression in everyting after a few slip ups on diet- he also did not have weight issues- but did have rash, irritablitiy, extreme sleepiness and neuro issues- all seems to be improving- wehave a mixed kitchen but we are all eating healthier and less gluten- my son will be 3 this month and he always asks before eating something when we are out and he knows what is his and what is not in our home- rec you have his vitamin levels checked
  2. deelind

    Does Anyone Know What Could Be Wrong?

    My situation seems very similiar- I have a 2 1/2 year old boy who since 9/08 has been having these episodes of ataxia (very unccordinated walking to the point he cant walk across the floor without falling) that have lasting for minutes to upto 15 days with varying severities. Sometimes his left foot turns in, sometimes he looks at his feet as if to say why aren't you doing what I ask you to do. We have been to 3 nuero, 2 ent, gastro to find the source- his MRI was normal, his eeg shows abnoraml spikes but no seizures, metabolic bloodwork -, he is also slightly delayed in all areas. The onlly ting that I can pinpoint right now is that removing dairy, gluten and soy have significanlty improved, not yet resolved his issues- we had 2 accidnetal screwups and the symptoms came back 4 days later (which leads to a food sensitivity which usually show up hours to days after eating)- his last one was a month ago and he had soy and sure enough 4 days later it started and got worse from day 8-14 before starting to get better again. He has had skin alergy testing which was - and he has also been tested for celiac (my fil has it) his blood work was - his genetic testing was 97%- (too complicated to explain right now) and it was too late for a biopsy because by the time i got the appointment witht he gastro he was already 3 months gluten free which can lead to a - biopsy. His hieght and weight have been fine and I didn't realize he was having poop issues until I removed the gluten and he had normal poops- I also have 2 other healthy kids. he was also vitamin deficient- but was a great eater so he is on strong supplements right now. So traditional medicine has done nothing for me. I see a holisitic docotor through Brain Balance and he feels that he is having an auto immune reaction that his bodyis producing antibodies that are attacking his cerebellum(part of the brain repsonsible for coordination). His immune system is stressed becuaase of food sensitivities. The food sensitivities that are usually associated with cerebellar issues are gluten and so I have told when dairy gluten and soy are broken down inthe body there peptides resemble each other very closely so if you have a sensitivity with one you could have with the others as well. he also gets these terrible eczedma patches onhis buttocks when he has these ataxic episodes- that clear up a few weeks after the diet mess ups. Right now we are doing a complete food removal diet for a month-no gluten, dairy soy corn yeast apples tomatoes chocolate eggsbeans and nuts -not as bad as it sounds once you get organized - and then start adding them back one at a time to see what he is sensitive too- I know for sure it is dairy, soy and gluten from my accidental screw ups. Sorry so long but it is a long story and your story sounds a little similiar. please write back with any other questions
  3. deelind

    Seizures And ?celiac

    Has she had any side effects the the medications- what were her delays like priot to gluten-free- is she dx celiac or just gluten intoerant and how?? Thanks
  4. deelind

    Seizures And ?celiac

    My 2 year old has an abnormal eeg- frequent 1-2-sec spikes adn waves but no actual seizure activity- this was pre gluten-free. Lots of weird neuro type things (tics, weakened legs) that improved since gluten free but still seeing like a quick kind of tic/startle a few times per day- hasn't been acutally dx celiac- (-)bloodwork and too late for biopsy- gluten-free since 12/08- gastro 2/09- we are waiting for the genetic bw to come back; gastro said we should treat him like he has celiac- especially bc we have been seeing improvment. My f-i-l has celiac- which is why se suspect- also has ataxia which is still present but has improved on diet- also dev delayed and lwo muscle tone- didn't see stomach issues until he went gluten-free- then has had normal bm's since- prior always explosive and smelly but weight gain never an issue- also ate tremendous amounts of food starting to slow down- also has slight vit a nad e def started on prescitption vitamans from gastro Anyway we are contemplating seizure meds to see if the ataxia and delays improve- may be caused by spikes- anyone else have anything similiar- how long did it take for neuro symtpoms to improve???