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Driven Mad By Celiac

Guest cd&dhspruehead

By Guest cd&dhspruehead
in Coping with Celiac Disease

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Guest cd&dhspruehead
Guest cd&dhspruehead
Posted

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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plantime Contributor
plantime
Posted

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!

midnightlullaby Apprentice
midnightlullaby
Posted

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.

debmidge Rising Star
debmidge
Posted

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!

plantime Contributor
plantime
Posted

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!

JsBaby-G Newbie
JsBaby-G
Posted

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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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • MichaelDG
      celiac.com support

      By MichaelDG · Posted

      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
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