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Driven Mad By Celiac
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6 posts in this topic

It still gets to me how people are ill informed about serten allergies.There are so many.Peanut allergy is the most herd about.Nuts this,nuts that.YES it is vary importent.But so is CELIAC/COELIAC''uk''and it shoud be known the world over without the strang looks from those you try to explane to.Gluten is toxic!We all have our stories on how we found out about ''THE SPRUE''and how doctors.famlies,friends thought we were crazy.DH just as hard to explane.Gets some fired to all because it looks like your not taking care of your self.Its all just mading!!!!!!!!!!!!!!!

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A pill cannot cure it, so there is no incentive for pharmacy companies to educate people about it. No one has committed a horrific crime and blamed on celiac disease, so there is no publicity value in it. We just have to do our best ourselves!

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Yes, this bothers me too. Sometimes when I tell people or I ask if something is wheat free/gluten-free at a restaurant people don't understand. I feel like people sometimes think I'm on some new age diet, when really, if I eat that stuff I'll be sick for days and days.

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You're right. Until I knew what it was I too thought it was a "new age" fad diet (really did). Like low carb. Now I call myself the Celiac Ambassador as I try to educate all who'll listen as to what it is, etc. I know I am boring some people, but maybe it'll stick in their heads & they'll recall the info later on if they hear about it again or if a relative comes down with it.

I pass out brochures from the Celiac Sprue Assn. I've even written up my own one page hand out and I leave copies of it at the supermarket.

I feel like an evangelist and celiac disease is my religion -- I will set you all gluten free!

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I educated the local butcher about it this morning. He can get me beef and pork that is only grain-fed, with none of the hormones and other garbage, but I will have to buy 1/2 of the animal to get it. I am calling all of my family to see if they want in on it. Meat with no additives is such a blessing for me!

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celiac disease,

I totally agree with you. It's very annoying (to say the least) to have to go through a detailed account of exactly what Celiac Disease is etc... I think it is getting better though 'cause now I run into people who say "oh yeah I know someone who has that." So time will tell I guess. :huh:

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    • puffiness in face
      The puffiness in my face went down a lot after I went gluten free. Old photos shock me sometimes now! Your doctor should be able to test you for food intolerance? Here in UK I did tests for wheat, nut, mustard etc. You can do a blood test and there's also skin prick tests I think, am sure others here would know more.  Good luck    
    • glutened by lays potato chips?
      Here in the UK I can't eat Lay's owned Walkers crisps as even the ones without gluten ingredients can cause a reaction. I read it was something to do with their production processes. Looks like others have same problems too:  
    • Newly diagnosed and totally overwhelmed
      Don't apologise! Not needed here at least where people know exactly what you're going through. As Cyclinglady says, you're now in a grieving process for the former, carefree attitude to food you've now lost. You may find this helpful in understanding the psychological journey you're on: http://psychcentral.com/lib/the-5-stages-of-loss-and-grief/ It WILL get better. Eating cleanly is very good advice as you heal but you can then find the replacement snacks and treats that are safe to eat.  I now know which chocolate bars are ok, which brands of crisps (chips) are safe etc.  I don't drink now, but I did find there were some fantastic ciders that I could tolerate and you've always got wine! In fact one of the weirder discoveries post gluten was that my past (vicious) hangovers were far more about gluten reactions than the alcohol itself. A cider hangover is a breeze in comparison All the best!  
    • glutened by lays potato chips?
      I ate some baked lays last night and felt very sick all night and haven't been feeling great all day today. Other than that I didn't eat anything different from what I normally eat and there was no risk of cross contamination with anything.. These were the only thing I had that was different. They're labeled gluten free so I figured it would be okay, but I started feeling sick pretty soon after eating them. I'm not sure if it's another ingredient in them or what (and i know it's not the soy).. Has anyone else had a reaction to lays potato chips?
    • Symptoms In Toddlers?
      Welcome Ashley! Here are the current tests.  The DGP versions seem to work a bit better than the TTG in small children.  So, ask for the complete panel (and get it all in one stick....my 15 year still hates to get blood drawn ! http://www.cureceliacdisease.org/screening/ Your doctors are wrong!  They must be reading old medical text books.  Not all kids or people have failure to thrive!  You can even be symptom free!. I was anemic and had no intestinal issues when I was diagnosed.  celiac disease affects everyone differently and that's probably why so many folks are not diagnosed. Your kids (parents, siblings too) should be tested every few years (sooner if symptoms develop) per all the leading celiac researchers/doctors if a first-degree relative has celiac disease (like you!)  celiac disease can develop at any age! Hope this helps!   
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