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sydneysmommy added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsSister Has Every Symptom But Her Dr. Won't TestI 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??????
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sydneysmommy added a topic in Gluten-Free RestaurantsHave You Heard About This Chef?http://www.kjct8.com/news/27377743/detail.html?utm_source=twitterfeed&utm_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????
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?
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sydneysmommy added a topic in Gluten-Free Sports and FitnessCeliac Runner In Training For MarathonI 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.
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sydneysmommy added a topic in Super Sensitive Celiacs & Gluten SensitiveIdeas To Speed Up Recovery From Contamination?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.
I need a super pill!!!!
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.
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sydneysmommy added a topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseX-Rays Showed A Lot Of "air Bubbles"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).
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.
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sydneysmommy added a topic in Celiac Disease - Coping WithWhat Happens To You When You're Contaminated?I've seen that a lot of people get very harsh reactions to being glutened (throwing up, sick for weeks etc). That's awful. Luckily, I havent had such a bad reaction as that since I was first diagnosed.
But I am wondering if it is normal, or if anyone else is like me?
Whereas, if I get contaminated or ingest gluten I feel immediate pain in my lower abdomen. I feel very bloated and an overall long lasting feeling of indigestion and pain. I get constipated for a day or two. Then followed by a couple weeks of fatigue, migraines, hormonal fluctuations that cause acne, and my menstrual cycle goes WHACK. And for some reason I always get a sinus infection or cold???
I've never heard of anyone else reacting this way. Am I freaky? Anyone know how I can deal with these reactions when I am contaminated.... bc unfortunately I've been glutened THREE TIMES in the last two months and it's put a giant wrench in my life and a lot of goals and plans I've had. SO FRUSTRATING.
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sydneysmommy added a topic in Gluten-Free RestaurantsContaminated 3X In 2 Months Now!In the past 2 months now I have been contaminated by foolishly believing a restaurant's statement that they serve gluten free items. We even carefully ask if they are made on seperate cooking pans/ovens etc and are reassured!
At one point I was literally served the wrong bread and it was too late. The waitress felt SO bad and I could tell she was panicked as I had already made a bee-line for the restroom and was sick within minutes. PAIN! And believe it or not, this very popular Austin restaurant's manager NEVER came over to our table. Their consolation? 25% off our bill and free dessert.
The 2nd time was at PF Changs which has always been wonderful to me and I specifically asked for the gluten free menu and ordered the GLUTEN FREE better lemon chicken. I immediately had a reaction to it. My gut was in pain and the waitress looked at me and said "that isnt gluten free, I didn't know you wanted gluten free?". WELL DUH! I don't know how many times I could have used the term gluten free in a sentence more than I did!!!! oh my peas.
3rd time was a famous pizza chain here in Austin that carries great gluten free pizza from a local gluten-free bread distributor. I've previously asked if they bake the pizzas on the same rotation oven and they said no it's seperate. and I've never had a reaction before but last night I had an immediate reaction and am not sure what part of it was bad. the veggies? the chicken i added on top? I don't know. but I was in pain again.
I am SOOOOOOOOOOOOOO frustrated!
that is 3x now in 2 months and I know I'll have to deal with the reprecussions of autoimmune response to these incidences now for the next 6+ months. Migraines, and the usual flare ups of the cold or sinus infections I always come down with not to mention leg cramps and so on. I am TRYING so HARD to train for this marathon and this just REALLY frustrates me.
I just want to be NORMAL... and have NORMAL PEOPLE GOALS without running into this crap.
Gluten free has become this "craze" now that people do as a lifestyle for health reasons or weight loss and I notice in my city, it isn't taken so seriously anymore. They are forgetting that Gluten Free is and HAS BEEN for people who are MEDICALLY and PHYSICALLY effected by gluten. Not this "ewps, accidently ate it but that's okay" kind of thing.
I am SO HAPPY that so many restaurants are becoming aware of this but I'm afraid its not for the right reasons. I feel that Celiac Disease is a bit forgotten and "gluten free" is used as a term to describe certain lifestyles now.
this is my fear.
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sydneysmommy added a topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseDoctors Don't 'believe' In Intolerance, Won't Test For celiac diseaseI am 30 and was diagnosed with celiac disease 9 years ago after suffering my entire life (since I was around 5) with chronic illnesses. I was a sick child my whole life, and it made things so difficult for me. (ear infections, joint problems, asthma, anxiety, insomnia and migraines starting when I was 7 & 10, and I caught everything going around and seemed to get whtever it was to the point I'd be hospitalized. My family was fed up with me pretty quick and I was deemed a hypochondriac. I felt so blessed to finally have an explaination for all those years of illness to be able to present something tangible and medical and say I'm not nuts).
Long story short: I DO NOT want my 2 girls to have to go through their lives the way I did.
If they do not have celiac disease, I'll be the first one to sigh in relief. But I just want to KNOW!!!
Why don't their doctors "believe in" gluten intolerance, sensitivity, or want to test either one for Celiac????
Both have had symptoms that I consider red flags and especially the fact that their mother has Celiac, I wonder why they wouldn't want to be on the safe side?
The pediatrician made some comment that she doesn't want the 5yo on a gluten free diet bc if she does that now, she won't build up a tolerance to it later in life. And she doesn't really buy into the intolerance "deal" because if that's the case then we're all intolerant to one thing or another and that just spooks everyone on some level which spirals out of control.
So after the youngest (21 months old) began having severe gut problems I just went behind pediatricians back and took her to a Gastro, and he suspected and wanted to test for celiac but not until she's 3?
But I keep hearing about intolerance and sensitivity and others getting this. Kicker is that bother girls' schools will not feed them a gluten-free diet without a doctors note.
So how can I do this?
for most part, she's normal. not too many symptoms.
but intermittedly she will have spurts of extreme anxiety.
suffers insomnia like I did
is also getting headaches a lot now
I had her on gluten-free before and she says she WANTS to go back to gluten-free bc it makes her feel better.
goes months without growing
either constipated or the opposite
(removed lactose, symptoms improved, but belly gets really big again after eating)
fussy after eating (literally belly blows up so big she's too large for high chair tray and it causes her pain)
a lot of ear infections, has had 2 tube surgeries and adenoids removed
doesn't eat a lot, picks her food. eats healthy, but just not a lot.
generally sleeps very well though
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sydneysmommy added a topic in Celiac Disease - PregnancyPregnant & Craving Everything ButI am 34 weeks pregnant and so far, have had a successful pregnancy staying away from gluten. No major cravings up until NOW. I am SO close to the end, why did it get me now???
the thought of certain foods makes me literally ILL. i've had to resort to just eating brown rice and vegetables bc I cannot stand touching raw meat or cooking it. kinnikinnick has some great options for me as i want things like donuts and cookies, but its so expensive, too! (God help me!)
I really want starchy things like muffins, donuts, cereals etc.
But I feel like I'm running out of options as my tastes become pickier and pickier. After a few times of eating a certain thing, I get very sick of it.
my husband and daughter are not gluten free and have plenty of things around the house that are making it SOOOOO HARD to not just grab and eat.
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