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Gluten Digestive Enzymes


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3 replies to this topic

#1 sugarsue

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Posted 08 December 2008 - 04:28 PM

We saw a new neurologist today and I am thrilled to finally find one who believes that dd's gluten intolerance is significant regarding her seizures. He may refer us to a GI doc if he feels it's important to find out if she has celiac or not. I'm worried about this since it would require that she go back on gluten but I'll worry about that later!

He's recommending that she take a gluten digestive enzyme at each meal whether she was glutened or not to help her digest any possible cc or unknown gluten.

She can't take pills yet so whatever I do I have to mix in a smoothie or something. Do you have any recommendations for products to use?

Thanks!
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Susan
LYME diagnosed 11/2010, allergic to wheat, Hashimoto's Thyroiditis, allergic to all grasses, most trees, dust
Mom to 9 year old dd, lyme, diagnosed 11/2011, highly gluten intolerant, epilepsy w/ generalized seizures, mitocondrial markers, malabsorption, recurring candida - Gluten-free Casein-free since 9/16/08. Diagnosed with P.A.N.D.A.S. 6/20/09, seizure free since going gluten-free!
and 10 yr old dd, Lyme diagnosed 11/2011, severe dust allergy, allergic to most trees/grasses/weeds. Positive gluten intolerance testing. Gluten Free since 12/09/08. Diagnosed with P.A.N.D.A.S. 6/20/09

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#2 Belinda

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Posted 08 December 2008 - 04:48 PM

Why would they of told you to take her off before they did any testing is crazy then make her go back :(
No way would I go back not worth to have it just on paper if she is doing well and you already have her gluten free keep her there.
If you haven't started the pills won't do that much good due to her consuming gluten there are for like being gluten free and eating at Grandma's and maybe she has not made her kitchen completely safe but cooked gluten-free then the pills would help, but far as taking the pills and eating whatever don't mix my son tried it when they first hit the market and tried taking 2 and eating bread like the health food store told him but he was reallly sick .so not sure if it is worth the 20-30 dollars a bottle to just try to find out. It is more for being gluten-free but someone being around with gluten foods then it helps you not to get any gluten in your system.
Not sure if they would do the same effect putting them in something so ask your health food store for more info they could prolly answer the effect.
I hope this helps and good luck!
Belinda
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#3 sugarsue

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Posted 08 December 2008 - 05:42 PM

Why would they of told you to take her off before they did any testing is crazy then make her go back :(
No way would I go back not worth to have it just on paper if she is doing well and you already have her gluten free keep her there.
If you haven't started the pills won't do that much good due to her consuming gluten there are for like being gluten free and eating at Grandma's and maybe she has not made her kitchen completely safe but cooked gluten-free then the pills would help, but far as taking the pills and eating whatever don't mix my son tried it when they first hit the market and tried taking 2 and eating bread like the health food store told him but he was reallly sick .so not sure if it is worth the 20-30 dollars a bottle to just try to find out. It is more for being gluten-free but someone being around with gluten foods then it helps you not to get any gluten in your system.
Not sure if they would do the same effect putting them in something so ask your health food store for more info they could prolly answer the effect.
I hope this helps and good luck!
Belinda


Thanks, yes, he meant for them to be for being gluten free and eating at Grandmas. I don't give her any gluten intentionally. If I ever have to put her back on, for further testing, he would not use them then. The doc that took her off had her go gluten free because he is a Dan! doctor and this is a protocol for his patients and she fit the bill and had a positive Anti-Gladian IgG test. But her new neurologist is going to be digging deeper and has a different speciality. I agree that I wish we had done more testing at the time, but I was not in touch with the right doc's. :( I can't imagine putting her back on gluten. I hope I never have to!

Good advice about asking whether putting them in something makes a difference too.

Thanks for your thoughts!
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Susan
LYME diagnosed 11/2010, allergic to wheat, Hashimoto's Thyroiditis, allergic to all grasses, most trees, dust
Mom to 9 year old dd, lyme, diagnosed 11/2011, highly gluten intolerant, epilepsy w/ generalized seizures, mitocondrial markers, malabsorption, recurring candida - Gluten-free Casein-free since 9/16/08. Diagnosed with P.A.N.D.A.S. 6/20/09, seizure free since going gluten-free!
and 10 yr old dd, Lyme diagnosed 11/2011, severe dust allergy, allergic to most trees/grasses/weeds. Positive gluten intolerance testing. Gluten Free since 12/09/08. Diagnosed with P.A.N.D.A.S. 6/20/09

#4 dilettantesteph

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Posted 08 December 2008 - 08:14 PM

I haven't heard about any gluten digestive enzyme that actually works. They are trying to develop one, but anything that is on the market now is ineffective as far as I know, and I think I would have heard.
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