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Not A Good Neuro Visit!

mooselulu

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mooselulu Newbie
mooselulu
Posted

My son had his follow up visit with neuro today since getting his MRI and EEG done. As you know I am new and was looking for insite as my son has had "siezure like" episdoes. His testing came back normal (as we already knew) but his liver enzymes were slightly elevated.

 

So the neuro asked me what his episodes looked like to me and what I thought this may be...so I told him that I am thinking its Celiacs Disease/Gluten Intolerance. He totally dismissed that thought and then proceeded to ask me why I havent had him off of gluten and or to GI for testing??? I told the dr that I have just now been researching Gluten and Celiacs, and that I wanted to get his opinion and I also wanted testing before taking him off of gluten.

 

He told me that whatever I suggested to him that that is what he is going to treat my son for, such as if its seizures, he would give a seizure med or if its not a seizure he would do further testing.....

The dr also thinks that because my son can answer a question in a short one word answer during his episodes and that my son can also tell us when he has had an episode that they are not seizures....

 

So I ask that we get blood testing to rule out Celiacs and he said NO!!!!

Then proceeded to prescribe Kepra for seizures that he feels are NOT SEIZURES!!!!! what???

 

Does this make any sense to anyone here??? I am very upset and will be calling our family dr tomorrow for blood testing for Celiacs. UGH!

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nvsmom Community Regular
nvsmom
Posted

(((HUGS))) No, it made no sense. :( What a dolt.

 

Good luck with the testing.

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

No no no don't test for Celiacs...   don't look for the true cause.... these pills are the answer ....(sarcastic tone)   ;)

 

 

Yes definitely get your son tested.

Make sure he's still consuming gluten prior to the test.

 

Here is the Celiac panel I used:

 

Total IgA
Transglutaminase IgA      tTG-IgA
Deaminated Gliadin IgA   DGP-IgA
Deaminated Gliadin IgG   DGP-IgG

 

 

 Deaminated Gliadin IgG   DGP-IgG      this is the best one for children. 

 

By testing you will find out if he has Celiac.

But gluten sensitivity could still be causing him problems.

So if the test is negative you can still try the gluten free diet.

durrsakja Contributor
durrsakja
Posted

I think it is a good idea to rule celiac out. The blood test is easy to do. I understand how it feels to be dismissed by neurologists. I was given pills and told the cause for my issues was idiopathic. I am sure there are cases where a cause cannot be found but it is good to exhaust all avenues in my opinion.

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