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sydneysmommy

Member Since 29 Mar 2006
Offline Last Active Apr 05 2011 02:36 PM
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Topics I've Started

Sister Has Every Symptom But Her Dr. Won't Test

05 April 2011 - 02:36 PM

I am so frustrated. Frustrated with doctors and society in general that take this diagnosis SO lightly. Isn't it true that if you have a sibling, parent or child with celiac disease then you SHOULD be tested for it??????

I was diagnosed via endoscope 10 years ago, and I was only 21. At that point my GI said it was pretty "advanced", and even back then awareness by doctors and general public was NOT what it is now.

I've told everyone in my family they should be tested.
They act like I'm being dramatic! Listen! I got this from SOMEONE!!!!!! It didn't magically appear in me.

I've also, since had 2 children and its like pulling teeth to get their doctors to order a test for them. the oldest is 5yo now, I think she's old enough to be tested. WHY NOT????

~~~~~~~~

About my sister.
I have 3 older siblings and the oldest has ALWAYS had problems with food. She has always had short stature (4'10 and the rest of us are 5'3, 5'5 and 5'11), gets BAD allergies, rashes in the sun, asthma, the list goes on. In the last 5 years her reactions to food have increased and she's had to literally elliminate 100's of foods from her diet. She's meticulous about it and keeps a diary and list.

I told her she NEEDS to get tested and she said "but I don't have diarreah" and I explained that's not just what celiac is and so she asked her dr for the test and he has now told her TWICE she doesnt need it, it's too expensive and he won't order it.

I told her to get a new dr. but her insurance is minimal and its hard for her to find one.



IM SO FRUSTRATED!


And my mom has diabtetes and Ive told her itd be just simple to do this and I think she wont bc if it turns out she does have it she'll have to go gluten free and she's not willing.




where can we find good doctors that wont treat us like idiots??????

Have You Heard About This Chef?

31 March 2011 - 04:52 AM

http://www.kjct8.com..._medium=twitter



I saw his facebook page before it was removed.
he boasted about serving customers regular pasta after they requested gluten free and laughed about it calling them "experimental projects" bc he thought gluten intolerance was a joke. One of his 'friends' did pipe in and post "have you ever heard of celiac disease. it will make you very sick. you shouldnt play around like that" but he didnt pay attention to her. another noted her friends son has autism and does the diet to aid in his treatment. again, he didn't acknowledge her.

he then made other rantings and posts about his customers, joked about the elderly or rednecks or cheapskates etc. then "liberal hippy retards" came up again.... that's us. people who request gluten free. (apparently we're a major pain in the butt and he doesn't believe for a second we have any validity in our 'claims' or needs so he just serves us regular pasta and calls it gluten free.... then SAYS nothing happens to us).

he cusses a lot too.


well i guess one of his friends became alarmed and took a screen shot of these and sent them to his restaurant. he got fired but it made its way around some gluten free facebook communities and several news channels. the facebook was soon deleted.

but this is SO scary to me.

if just ONE chef like this feels this way, has this philosophy or attitude-- HOW MANY OTHERS ARE OUT THERE????

and I wonder if that's why I've had such a hard time eating out lately????
aaaaaaaaaahhhhh!!!!!!

by the way, that gi doctor quoted in that news clip doesn't even chip away the tip of the iceberg on "cileac" disease in that article.... another scary thought. who is this doctor?

Celiac Runner In Training For Marathon

28 March 2011 - 06:03 AM

I am a runner, and run many races from 5ks to marathons. It has been a constant uphill battle since I cannot train with your average running 'groups' (ideal) bc of my health problems and schedule conflicts. For one, I am a fulltime student, mother, wife and stay busy so my schedule is constantly changing. I run when I CAN! That said, my body and my gut is always changing too! I can never count on it to just be NORMAL.

Despite living gluten free and having now turned my home into a completely gluten free home (I'm the only celiac here)... I still have issues. Seems to happen a lot when I run too. That adrenaline rush tends to send my gut into a frenzy.

Don't get me wrong; I LOVE RUNNING!

But what. is. going. on!!!!!!!!!

I need to figure this out especially for my longer runs.

Ideas To Speed Up Recovery From Contamination?

23 March 2011 - 05:11 AM

Lately I have been VERY sensitive to any kind of contamination or cross contamination. Meaning, I am showing immediate and obvious/strong ill reactions after the slightest ingestion of gluten. Just the tiniest flake of wheat germ or slight dusting of it on the table-to-my-food-in-my-mouth kind of a thing. It NEVER used to be like that. I have 2 kids and a husband that do NOT eat gluten free and we've never had to worry about cross contamination but now it's terrible bc I stress about cooking their seperate pot of spaghetti (yes, my husband still insists even though we now have VERY good spaghetti...kids don't mind). And I've had to get a new toaster just for my bread.

I think stress has something to with my new 'sensitivity'. Because I was diagnosed 10 years ago and have NEVER been this reactive to small amounts. I get that I've probably had underlying issues as a result of cross contamination, which is probably just as dangerous and this physical reaction is likely a blessing in disguise to get me to really pay attention.

Well I AM!!!

My question is... how to I DEAL with the physical symptoms in the meantime? I feel like I cannot get back on my feet for weeks. (magic number seems to be 2 weeks after contamination as long as I am VERY strict).

Fatigue, cramps that are really bad one day and totally fine the next, then hit me bad the next, IBS which is like PMS of the intestines... can't make up its mind if I have constipation or the opposite, migraines and tension headaches, BRAIN FOG, gas (Lord help me), hormonal fluctuations which cause this 30yo to break out like a 14yo and also I'll miss my period entirely. I am also a runner and am training for a marathon- and my joints begin hurting TERRIBLY (hips and knees) so this cripples my long runs for two weeks which is uncool.


HELP.


I need a super pill!!!!

Any ideas?
I need help trasitioning and smoothing over these horrible effects.


I already practice a VERY strict regimen of eat well ----> exercise well ----> sleep well. Purely organic whole foods and a dynamic round of exercise and no matter what I sleep about 8-9 hours a night. That has always worked for me to stay strict with those 3 elements but when I get glutened my LIFE is upside down.

:(

X-Rays Showed A Lot Of "air Bubbles"

12 March 2011 - 12:37 PM

So I put my foot down like so many of you suggested and went to the children's hospital full steam ahead to get my 22mo tested for celiac (distended belly, fussy, chronically ill, small arms and legs, 10th percentile weight and height, always fussy following eating, seemingly lactose intolerant etc. ps. I have celiac disease... obvious red flag).

GI specialist wants to do xrays and bloodwork first but said he thinks the only real way of telling is the scope (he's hesitating to put her through that yet, especially bc she's young and it may not come out clear one way or another).

anyway...
i insist. im so sad for her.

they did the blood work out (don't know until monday) and xrays.
immediately the tech said she sees A LOT of "air bubbles" in her stomach and asked when the last time she ate. I explained I had her eat a lot of "gluten type things" that day and the last time before testing was about an hour. She said "ah. okay".

can someone tell me (because I have zero patience whatsoever) what that could mean?
gas obviously? indigestion?

is my poor child walking around in constant discomfort???


HOW LONG UNTIL I CAN JUST PUT HER ON A STRICT GLUTEN FREE DIET????
im so frustrated. i want her better.