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Fire Fairy

Member Since 25 Nov 2010
Offline Last Active Jul 22 2013 07:01 AM

Topics I've Started

Affordable Care Act ?

15 June 2013 - 08:32 AM

Does anyone know what the Affordable Care Act will mean for un-diagnosed Celiacs like me? I am a bit afraid the Affordable Care Act will require that I go to a Dr. And when I tell him/her I'm a Celiac (without a diagnoses) what will he/she do? Will they make me be tested? If they do I'll have to go back on gluten? I've been gluten free 2 and half years and I know if I have to go back to eating gluten to be tested I won't be able to function. My work has started having strict absentee policies so if I was out sick several days I'd be fired. My workplace seems to be making it harder on the old timers because they are moving towards having as few regular employees as possible. They now only hire temps. I'm guessing this is to dodge healthcare increases when the Affordable Care Act starts. :(

Celiac Blood Panel

12 June 2013 - 07:53 AM

Results from my mom's blood tests came back and the nurse read to me over the phone "No signs of Celiac disease". Now I'm sure there was more in the report, maybe that was what the Doctor wrote down to tell me. Point is when my mom had the test run she sent my dad out to buy all the gluten filled treats she loves, presumably so she could have them one last time, what do I do now? I mean really if any of our long timers could get a hold of a copy of her medical history you would see why I think she has to be Celiac or NCGS. What do I do? It's almost like I have a 75 year old baby and the Doctor is telling her she needs gluten to be healthy!  She loves her gluten, do I try to take it away when she got a negative result? I might could talk her into trying it. If she does have a problem with gluten it could make her much healthier. On the other hand in her poor health a severe glutenating once she is gluten-free could be very very serious.  


I almost want to go the bakery and eat a bunch of gluten just to prove to her beyond doubt that it's poison to me. Then I think she'd want it all out of the house for my safety.


PS Mom still has all of her mental capacity despite a stroke, when I say it's like having a child I mean her mind set towards gluten filled food. We tried having her go gluten free before and she would send dad out behind my back to get her treats.

Seizures And Celiac? I Need To Get Some Thoughts

05 June 2013 - 06:17 AM

When I was an infant the Doctor told my parents I was a "seizure baby" and I probably won't live more than a couple years. When I was still a small child they decided it was inner ear trouble and put tubes in my ears. I honestly can't tell you how old I was when those seizures stopped but I do know I had gotten to the point I could tell when one was coming and they didn't scare me anymore. I was old enough to be in Sunday school I know this because the Sunday school teacher didn't think my seizures were real she thought they were an act to get attention. There was an ugly incident where this teacher drug me out of her class room while I was seizuring, yelling at me the whole time that I was a spoiled little brat etc (Which might be why I never expect an authority figure to believe a word I say).


The seizures of this type ended about on par for it to have been inner ear trouble. However when I hit puberty I started fainting on occasions this continued into my early 20's. Then it just stopped. In my late 20's I noticed I occasionally had eye twitching not often but I was scared by it. In reading about Celiacs and Seizures I read something about a really mild seizure looking like eye twitching?


Then there is the thing that started in 2003. I started losing a tiny bit of time. I'd be standing at work or in the grocery store and no one would be near me then suddenly several people would be there. It was really scary. Like something out of sci-fi. Then I think it was 2008 when I started having moments when I just dropped to the ground and afterward I was horribly dizzy and my reflexes were shot. And about the same time period I also had three episodes where it was like all the data in my brain just went offline for a flash then it popped back in. The first thing I got back was the concept solid if that tells you how much my brain was freaked out.


Do these events sound like seizures?  I haven't had any of these things happen since going gluten-free in November 2010. I had actually feared the last one I described might have been a mini stroke but now I'm wondering if it was a seizure instead.   

Celiac Blood Panel Done On My Mother

05 June 2013 - 05:24 AM

Okay I have Celiac disease and I think there is a great likleyhood my mother does as well. To be honest listing all the things that have gone wrong with her health since I've been alive (39 years) is like writing a poster for Celiac symptoms and complication. Most recently she went in to have cataract surgery in November and either during or immediately after surgery (unknown or at least unacknowledged at the time) she had a mild stroke. We found out about the stroke after she went to her new DO in March for weakness. She is finding it difficult to stand/walk and is often very dizzy. The DO first noticed she had a small mass in her right breast which became her immediate focus. It was a very tiny cancer and the Dr's alternated between saying it was malignant and benign but either way they insisted it must come out immediately. They also assured her this had nothing to do with the weakness. They did a lumpectomy and sent her in for an MRI of the brain to make sure the weakness wasn't brain cancer. MRI came back showing she had had a stroke a few months earlier. Now before we could do anything else including physical therapy and X-ray therapy for the affected breast she developed shingles! She was finally allowed after another two weeks to begin X-ray therapy. The oncologists are panicd because she has been getting the lowest doses possible and she is getting weaker and Mom is telling them she wont survive the treatments. The Oncologist suggested she could have an unusual case of a rare autoimmune disease called Myastenia Gravis. It usually shows itself through weakness in the eyes and her eyes look fine. So Monday the oncologist insisted her DO has to get her in to a Neurologist now! He also sent her for another MRI. We went to her DO yesterday and after a bit of poo pooing the oncologists panic the results arrived at the DO's office. There is new damage to my mom's brain. It is not a stroke but they don't have any idea what it is! The DO ordered full bloodwork (including a celiac panel at my insistence) and told us to come back in 2 weeks and by then she will have found mom a neurologist. Now when Mom went for her X-ray therapy the nurse at the oncologist said that would never do and she now has another appointment to talk to the Oncologist today.


All this to ask two things 1) The DO said that the results of the Celiac panel could come back false positive because mom is immune compromised by the X-ray therapy. Is that true?

2) Anyone have any thoughts on my mom's situation? Mom is getting very tired of not knowing what is wrong and she used to a sitter, she sat with mostly dementia patients, she's getting rather scared and so am I. Right now she is mentally on the ball it is physically she is falling apart but with it being brain damage.....she also going crazy not being able to do anything. Her arms and more so her legs are so weak she can't hardly get to the bathroom and it's only a couple feet away.  


They should get the blood work back today but I don't know if they will call us with the results or not.

Okay Curious Anyone Feel Sicker In The Summer

02 June 2013 - 10:52 AM

I work outside a lot in the Summer as a Garden Center cashier. I live in TN and it gets hot and humid. Before going gluten-free the Summer almost killed me.  Now I've noticed this Spring when I go on break or Lunch from garden, when I come back I'm very sick to my stomach. Right now I feel particularly ill and I'm not sure if it's PMDD, Cross Contamination, or Tension. My head has been feeling progressively worse since about 1. It is almost 3 here and I go to work in my steaming hot Garden Center at 4. Feeling sick to my stomach now and trying to drink some tea to flush my system. (Which will be very bad when I get to work as I'll be very far from the restroom) I think today at least I may have to beg my supervisor to keep me inside and send someone else out. :wacko: Do any of you feel worse when out in the humidity?

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