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Hello,
  I was wondering if anyone can tell me if they have experienced this situation in connection w/ CD.  A little history first.....My 4 children and I are gf.  They were diagnosed serologically, the three oldest had high IgA ranged from classic to atypical symptoms.  Our youngest daughter who was just barely 4 at the time of testing had no symptoms whatsoever, but we decided to test the whole family as it is present on both sides.  Her tests came back w/ low total serum IgA and high IgG.  The genetic tests were contradictory, but since improvement in their health post gf was so profound, I wasn't in any doubt as to whether or not to stay gf.  The doc & testing lab said that the results of the 4 yr. old were most indicative of celiac of all the kids but w/out biopsy we couldn't be 100%.  I decided that I didn't want to go through all that at her age, and that since it ran in the family and she was DQ2 gene positive (assuming accuracy), I'd play it safe, hoping to avoid the development
 of CD symptoms.  We have been 100% gf for over a year with very few accidental gluten ingestions.  Everyone is very very much improved and we are once again enjoying HEALTH.....until the seizure.
  The youngest, now 5 year old daughter had a grand mal seizure out of the blue one night shortly after going to sleep.  She had a second seizure of exactly the same type about 1 and a half months later.  We took her for MRI and EEG a week after the first seizure.  The MRI was negative :) and the EEG abnormal.  The neurologist said she had a "classic" childhood form of seizures that are typically outgrown by adolescence.  We will make a decision whether or not to medicate depending on future seizure frequency.
   I read that Celiacs have a greater occurance of seizures...I'm not sure if that includes gluten free (recovering:) celiacs.  I'm not sure of the connection if there is any.  If she is indeed Celiac but was a silent one prior to testing, could that have predisposed her to seizures?  Childhood seizures are also on both sides of the family...but since CD is as well, (and untreated on the other side of the family) its hard to know the connection if there is any.
  I have no doubt that we did the right thing getting off gluten.  The kids get pretty sick in varying degrees when exposed to gluten.  Our nutrition is good.  We eat lots of whole foods, home cooked meals, stay away from cheap carbs and encourage protein.  Her weight has gone down, too, lately...she's 41 lbs. now and that's about a 4# drop!  She's not a big eater and a fireball of energy, but not hyperactive.  She's put on some height, too, of late so I wondered if that was just a normal growth spurt of height.  I was asked if there's any chance that taking her off gluten could be depriving her of valuable nutrients, thus causing seizures, but I don't see how not eating gluten can cause seizures if the body/brain is being properly fed!
  I would like to have all the kids tested for various vitamin/mineral levels but don't know where to begin, what to ask for.  The doc who worked w/ us on testing is on prolonged leave for illness...so I'll be working w/ a new doc.  The medical community in my town (pop. 3,000) was very unaware of Celiac Disease...my doc let me educate him, and in general the med community seems more aware, willing to test/diagnose.
   Sorry to make this so long...just thought I'd get in all the background to help.  Any helpful information would be greatly appreciated.  It was the most frightening moment of my life to experience her seizure and I'm grateful that its not something worse...but this is the worst we've been dealt so far.  Thanks for your supportive "ear".
  Peace to you,
  Kate, Salmon, ID


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