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It's Celiac!
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5 posts in this topic

Exsplaining celiac to others is like talking to a wall.If doctors don't get it ,why would the general public.Wheat is only one of the things we are allergic to.It comes in so many forms.''Wheat allergy''makes it all seem tame.No one can grow out fo Celiac.its there for life.Look at foodallergybuddy.com for example.Thay have down lodeable food allergy cards.Whats there to ceck off under the wheat calum.Every thing but barley,rye,oats,ext.

There has got to be a way to shake up everyones way of thinking.Tv,radio comercels,newspaper ads,something.T-shirts are ok,bumper stickers yah,but do you pay any attention when your busy doing other things.Coeliac uk is five years ahead of us here in the US.YOU CAN'T BREATH WHEAT IN TO YOU BODY,BE AROUND A WHEAT MILL,OR USE IT.All will couse a reatsion.

It hi time people get the message that this is CELIAC not ''wheat allergy''.

:angry:

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While I get your point, some people still aren't up to speed on allergy. And some people treat allergy with more respect than intolerance. (Celiacs, even a bad case, is not at all likely to have you dead 30 minutes after a small exposure. Anaphylactic allergies are. So, people assume if it won't kill you right away, it's not awful if you get a bit.) Definitely more education is needed, and for those of us willing to answer the questions and take the odd looks, starting by saying "I'm gluten intolerant; eating wheat, barley, rye, or oats will make me very sick." is a good start.

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Although you all may not agree wth my way of getting the seriousness across I like it: I let my food servers, cooks, etc know that I have Celiac Disease and that it is a SEVERE intollerance to wheat, gluten, barley, and oats, and that even cross contamination can harm me. Then I ask them if they know what Celiac Disease is and if they understand it, if they do I leave it at that. However, if they don't I simply let them know that even the smallest amount of the ingredients I listed can kill me or make me violently ill very quickly, and that I would prefer my meals w/o garnish and everything served seperately and to please cross reference any "iffy" ingredients with my Celiac card. As far as the general public goes, all my friends, family and doctors are knowledgeable about it, and I'm always informing people about it when I can find a discussion starter.

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Doctors are not up to speed on CDd or DH.Its a food allergy to them.Meds have ''W''.Liqued & or pill.Its up to us to get the phormest to look it up if thay ever have the time.

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Hi! I'm PastorDave's wife. I love the way he tells people about his wheat "intolerence." He says, "well, it won't kill me at once, it will just kill me very slowly and painfully!" They get the idea!!!

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    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
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