Vonnie Mostat
Entry posted by Yvonne (Vonnie) Mostat, RN
4,976 views
Whatever you do, DO NOT fail to mention that you are a Celiac if you have to go into your local hospital, even if it is not an admission for celiac disease:-
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It is dangerous not to mention to your nurse, or any nurse treating you, that you are a brittle celiac. I have had so many "accidental issues" - outbreaks of dermatitis herpetiformis and celiac disease issues. From the nurse that told me she would make me a "Nice cup of tea with some cheese crackers" when I could not get back to sleep one night. She returned with some crackers containing gluten, and when I asked about the cheese, which was a cheese not familiar to me, but not Blue Cheese, which I know contains gluten. I have had hot chocolate that contained flour, and I have also had some gravy over my potatoes but containing flour as a thickener. This was after three days in hospital. Many nurses, even R.N.'s do not know that Soya Sauce contains gluten, and I often wonder what is going on in the kitchen too. I know, and they say, that the longer you have celiac disease the more "brittle" you become - that means that you possibly cannot tolerate the 20 grams guideline of gluten in foods that they suggest. After 27 years of living with celiac disease I know I have become more brittle, or sensitive to gluten. Recently my husband purchased me a nutrition bar while waiting at the Pharmacy, On the front of the nutrition bar, at the top of the wrapper it had the official Celiac insignia, the wheat sheaf crossed out, so he purchased one, not thinking to check the ingredients. I enjoyed the first few bites of the bar when I decided to read the back label. Right at the top, and that usually means it is one of the bigger parts of the nutrition bar, it listed FLOUR. There are lots of flours, so I called the company, asked them about the "Gluten Free" insignia on the front of the bar package, and I mentioned the "Flour" noted in the ingredients, What often occurs when you call a company like this you are reaching their general reception and not the floor where they make the food article. So I was told they would call me back. I waited until the next day, when I could have told them that the nutrition bar did contain gluten. "Oh No," I was told, that is until I asked them what flour they were using in creating the bar. Big Silence. Referred to the General Manager of that Department, and she apologized because it was plain, not acceptable flour. She offered a refund which I refused, but told her that either the Wheat sheaf insignia had to be taken off the bar, or the flour had to change to a gluten free flour. Many people would accept the insignia as the "truth in advertising". I found out that it was not a "cheap Bar'. My husband would not tell me how much he paid for it, but I did find out that he had purchased two of them, one he was going to save until later. I told him to eat the second one because I had a stomach ache, some diarrhea and some DH sores. "All that from eating half the bar!?" He said. I told him that the longer you live with celiac disease the more sensitive you became to the smallest amounts of gluten. When I became a Celiac 27 years ago I used to gather some icing off the covered cardboard holder for the cake. Often, there is a LOT of nice gooey icing remaining on the cardboard, and some people take off the created roses off their piece of cake. Such a travesty for a sweet person's tooth! I woke up to this fact, but it took me over a year to realize where I was getting "Bitten" by the celiac bug, and it was all my fault. Since then I have resisted licking any icing from anywhere. Why they had to use flour in their icing I will never know, but I now manage to restrain myself with icing of any kind. I know it is not good for me, Number One. and Number Two, there is always crumbs attached to the icing, and the longer I suffer with celiac disease the more sensitive I become. We have only one Chinese Restaurant in Langley that we can trust, where the person that answers the telephone knows my husband and knows about celiac disease. They do not use MSG, and they tell me what has gluten in it, or flour if they do not understand the gluten part of the question. I do not use the cellulose pre-packaged Soya Sauce or Sesame Seeds or even the oil or the fortune cookie. You become your own detective, and I have learned from my earlier mistakes. This nutrition bar is the first time I have experienced something like the Logo issue and the ingredients. I will stick with reading the ingredients from hereon in.
Vonnie Mostat
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