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Can I Cope? Venting...

imsohungry

By imsohungry
in Coping with Celiac Disease

Recommended Posts

imsohungry Collaborator
imsohungry
Posted

What's that up in the sky? It's a bird...it's a plane...no, it's Superwoman! (Oh, no...looks like she's in for a crash landing). SPLAT!!!!! :blink:

Superwoman, I am not...I am the SPLAT on the ground. <_<

I am feeling incredibly sorry for myself right now (anybody willing to lend a foot to kick my butt with?). :rolleyes: Actually, I'm mad, sad, and ticked off all at the same time. I've had two seizures today and four in the last three days...no grand mals, but all complex-partials with a good dose of simple-partials thrown in there to make me dizzy, tired, and off-balance. All of my various autoimmune problems seem to be having a hayday too. I know I'm stressed; there are our financial and health problems, plus being a new mom, plus my mom and step-father are both in and out of the hospital with serious medical complications (i.e. cancer, pancreatitis, and appendicitis). :(

I suppose the icing on the cake was this week when I asked my doctor (neuro.) about applying for disability (at least for the short term)....her reply was rather rude. YOU would not qualify and I can't support it. She continued, "there are plenty of people out there who have seizures that work." She isn't telling me anything I don't already know. THAT is what I have ALWAYS done, work. And THAT is why I worked my A$$ off to get three college degrees. I can't explain it...I'm 30 years old and feel 70 physically. I just need some help for awhile. I really don't appreciate being treated like lazy scum (and I usually love this doctor). My feelings and my heart are hurt.

I also tried to bring up the research on Celiac disease and seizures. She dismissed me and told me that she knew what Celiac disease was and there was no connection....oh, well, she shot that idea down too.

I left her office feeling lazy and stupid...and now I'm home sick and tired (literally and emotionally).

Sorry for such a long vent. -Julie

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CDFAMILY Rookie
CDFAMILY
Posted

Julie,

Here is a link that has info on sezuires and celiac:

Open Original Shared Link

I am so sorry that things are so difficult for you now. You sound like me, someone who continues to work hard even though the body is not cooperating! I struggled thru a year and a half of feeling lousy and weak but have finally crossed the finish line in the last few weeks....I hope...I had a few days of feeling better in the first few weeks of gluten free then, I went up and down...but mostly down for almost a year. I was lucky in that I could work whatever hours I wanted which seemed to be very little for the last 6-8 months. I wish your neuro could walk our walk and then maybe he would change his mind about giving you disability for a few months. I definitely felt disabled for quite some time.

I hope things start to improve soon.

From someone that knows.

CDMOM

happygirl Collaborator
happygirl
Posted

Oh, Julie, I am so sorry. I unfortunately don't have any advice and don't know much about seizures. I did find these on celiac.com but I'm sure you've seen them:

https://www.celiac.com/st_prod.html?p_prodi...-04106572867.ed

https://www.celiac.com/st_prod.html?p_prodi...-04106572867.ed

https://www.celiac.com/st_prod.html?p_prodi...-04106572867.ed

I will keep you in my thoughts. I know you are a new mom and are thrilled, but I hope you find some quiet time for you. Keep us updated, ok?

HUGS

imsohungry Collaborator
imsohungry
Posted
  • Author

Thank you both so much for replying. I could "read" the empathy in your posts. (((HUGS))) to you both. :wub:

Thank you for the links. Do you think it would be to bold of me to e-mail my neurologist some of the links and research that I've found? Honestly, she brushed me off so quickly. She said that without a positive biopsy, it wasn't Celiac anyway...it's funny, but the GI said my symptoms, family history, and positive bloodwork were enough to convince him...but my neuro. thinks otherwise???? HUH? :blink:

She said the ketogenic diet is the only diet that research has shown to affect seizures. She cut me off rather rudely. (Even my hubby said so; he was in the room holding the baby...and he never says anything bad about others). Maybe the doctor was just having a bad day. :huh:

I wanted to ask about the Celiac/seizure connection not just for my benifit but for the possible benifit of others as well. And I definitely was not trying to say that my seizures are caused by Celiac...just curious if she thought it may be a contributing factor to my refractory (recurring) seizures/epilepsy.

Again, thank you for responding. Please let me know if you think it would be inappropriate/appropriate to e-mail her some well-researched medical journal articles/findings.

It's not even 8:30 and I'm going to BED! HA! (I'm taking your advice Laura) :) I'm tired of thinking about the bank account, family, and myself. I'm getting off my pity pot (and wiping) B) and going to sleep!

Blessings. -Julie

happygirl Collaborator
happygirl
Posted

Ok, Julie, I don't know why this didn't occur to me. But awhile ago, on Discovery Health channel (I think!), there was an episode of a show that dealt with Celiac and seizures. It was called Medical Mysteries or something like that. There were discussions on this forum about it. It was a little boy who had these weird seizures, I think. They didn't know what was wrong. Turns out Mom had Celiac but the dr. told her it wasn't genetic (go figure). Turns out it WAS Celiac.

Let me see if I can find anything on it.

xoxo

jerseyangel Proficient
jerseyangel
Posted
Ok, Julie, I don't know why this didn't occur to me. But awhile ago, on Discovery Health channel (I think!), there was an episode of a show that dealt with Celiac and seizures. It was called Medical Mysteries or something like that. There were discussions on this forum about it. It was a little boy who had these weird seizures, I think. They didn't know what was wrong. Turns out Mom had Celiac but the dr. told her it wasn't genetic (go figure). Turns out it WAS Celiac.

Let me see if I can find anything on it.

xoxo

Laura--If this will help, the episode was titled "Like Mother, Like Son".

happygirl Collaborator
happygirl
Posted

Thanks, Patti. Working on it....xoxo

Julie, Do you have Dr. Green's book on Celiac. I have it, but I lent it to my Mom. It is so comprehensive and I swear he talks about seizures in there. Check that out---or maybe someone who has their hands on it can look it up!

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daffadilly Apprentice
daffadilly
Posted

"Celiac Disease", A hidden epidemic by Peter H.R. Green M.D.

Neurological Manifestations, page 83 the chapter begins

page 84 in a highlighted box - "The well defined meurological associations with celiac disease include the following:

peripheral neuropathies...

ataxia...

epileptic seizures, with and without intracranial calcifications (calcium deposits in the brain), particularly in children

migraines

brain atrophy and dementia...

Highly recommend this book. & also the book Dangerous Grains

yep, I would be sending the uppity lady doctor some references akong with a piece of my mind.

tarnalberry Community Regular
tarnalberry
Posted

I'm sorry the doc was so rude to you. Is it possible to get another doc? She is serving you, after all. You are paying her.

Sometimes we don't fit into the little boxes other people want to put us in, and it frustrates them, and us when we try to comply and work with their system. I hope you can find a way around this problem. :(

imsohungry Collaborator
imsohungry
Posted
  • Author

Thank you all so much for your support. I've just had a chance to sit at the computer for a minute.

Tiffany,

I appreciate your advice and empathy. :wub: I totally agree with you on the "little boxes" comment; I think doctors lose patience with themselves sometimes (when they can't easily solve a problem) and take their frustrations out on the patients (sometimes intentionally, often unintentionally).

Laura, Patti, and Daff,

Thank you SOOOO MUCH! I am definitely going to look into finding Dr. Green's book and Dangerous Grains. If I get up the courage, I may e-mail her...I really want to. Actually, I wanted to have an adult face-to-face conversation about the subject of Celiac, but since I was blown off, I guess the next best thing is an e-mail.

Hey, I saw that Discovery Health episode too! I had completely forgotten. The little boy had one of my types of seizures (I have three types)....I believe he was having complex-partials. His weren't exactly like mine, but they were close enough that I thought WOW! I think that is what made me really start examining a celiac/seizure connection.

If water, estrogen, caffeine, and certain herbs have been found to affect seizures, then why on earth would a doctor not be willing to consider gluten????? :rolleyes:

Again, thank you and (((HUGS))) to all for your support! -Julie

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