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Driven Mad By Celiac
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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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    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
    • AdrienJ, thank you so much! I dream of traveling more one day. I have spondylitis too. I'm so glad that a gluten free and casein free diet is helping you feel your best!
    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
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