Has Anyone Experienced Dietary Issues From Their Meds? | MyEpilepsyTeam

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Has Anyone Experienced Dietary Issues From Their Meds?
A MyEpilepsyTeam Member asked a question 💭

Hi everyone, I hope you are all well. Being new to the forum I don't know if this has been asked before, so I apologize if it is a repeat. Since diagnosed with epilepsy in 2010, and being put on medication I have become essentially celiac. One of the triggers for my seizures is refined sugar. I can tolerate about 1/2tsp to a tsp a day max. Have been very stable for 5 years no known seizures or deep brain "incidents " that I am aware of ( I used to get seizures in my sleep but they always woke me… read more

posted January 31, 2022
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A MyEpilepsyTeam Member

Absolutely having gained off and on weight depending on the meds. I can completely relate. I don't like that any of us have to just kinda put up and shut up about side effects and baselines etc. The study I am involved in as a patient is really hoping to change that and adopt some European methods. I know reading some of the European journals saved my life due to a little know side effect of a med. I also grate that John Hopkins has never stopped researching. For me personally I have made peace and I honestly have with all the othe quirks that these meds bring. This question is more about physical body damage and finding elusive results for Neurologist and Dr. because especially right now they don't have time to look and my Neurologists trust me enough to find credible sources. I now many of my family members would happily donate a kidney if needed, it doesn't solve the underlying issue though. This forum is amazing and has wonderfully different perspectives vs. Medical journals and as my Neurologists told me. Only you know your body well.i can't feel what you're feeling. I can take blood work and make suggestions but only you know what is truly happening in there. I adore her. She was the first Neurologists that took my sensitivities to sound and infersound seriously as a trigger and through the study she was able to say yes you were right. This however she is struggling with because I also have a malformation of the white matter, even if I never have another seizure again in my life in this country anyway I am required to be medicated to a baseline.

I really hope that everyone is kind to themselves and their sides

posted January 31, 2022
A MyEpilepsyTeam Member

It is fine to ask the questions. There are plenty of friends, like me, who are always happy to answer.

Do you know which medication brought on Celiac disease?
If not, then do you at least know what medications you were put on prior to Celiac disease developing?
NOTE: At least one medication has a rare side effect that brings on Celiac disease, I remember looking this up for a friend a month or so ago. And I know that it is listed as a rare side effect of, but I don't recall which it was.

==========================================================
However, if you did develop Celiac disease by usual means, then here is a complete up-to-date source about it from this page on the US National Library of Medicine site: https://medlineplus.gov/celiacdisease.html

And here are more details on Celiac disease from the Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/...

And here is specifically how to get enough grains from the Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/...

Celiac Disease points out that certain medications, vitamins and supplements can contain gluten, thus stay clear of these.
https://celiac.org/gluten-free-living/gluten-in...

As for the details on your 2 medications:
Aptiom https://www.drugs.com/aptiom.html
Clobazam https://www.drugs.com/mtm/clobazam.html

posted January 31, 2022
A MyEpilepsyTeam Member

When I was on Keppra I it suppressed my appetite as well. Do you mean a CBD oil.spray?

posted February 9, 2022
A MyEpilepsyTeam Member

The meds I take are keppra and Lamictal and also ativan for tremors I'm going to ask if it would be alright to try the spray it supposed to stop the tremors and keep from having a full blown seizure

posted February 9, 2022
A MyEpilepsyTeam Member

I find that my medication I take seems to curb my appetite what kind of diet do you all do

posted February 9, 2022

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