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VioletBlue

Member Since 04 Jan 2007
Offline Last Active Feb 04 2011 02:02 PM
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#652288 Cilantro Recall

Posted by VioletBlue on 09 November 2010 - 11:42 PM

Please don't tell me you think I should be eating those spiders I squish ... at least I know they're gluten- and dairy-free!


You know, these days my motto is "If I'm not allergic to or intolerant of it, I can and will eat it." So pass the spiders. They gotta be a good source of protein. B)
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#644527 Pumpkin Recipes (And Stuffing?)

Posted by VioletBlue on 07 October 2010 - 12:24 AM

Every year I make a pumpkin cheese cake. For the crust I grind up a combination of pumpkin seeds, almonds and mix it with a little gluten-free flour brown sugar and butter.
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#643267 Just Patting Myself On The Back

Posted by VioletBlue on 30 September 2010 - 02:06 PM

The DNA tests are, um, interesting. I believe there is a lot that is not understoodd about Celiac Disease, Gluten Intolerance and the differences between the two. And that includes in the realm of DNA. Also the results of the DNA depend on whether a doctor sticks to a strict interpretation of what a "celiac gene" is. The understand of which is which and how much it matters is changing and evolving.

My suggestion would be to find out which genes the test found and start googling the specific genes for yourself to see what kind of information comes up. You will find more current information on the web about DNA than exists in your doctors head.

And BRAVO for asking! :D




Hi Everyone,

I posted over a year and a half ago about possibly being a false negative for celiac disease. After a number of cross-contaminations that left me out of commission for a few days each, I have decided to take matters into my own hands.

I am nearly certain that I have celiac disease, and also frustrated with the distinction between celiac and gluten intolerance, since it seems that many people in this forum have symptoms as debilitating as those who have the official diagnosis of celiac disease. I also just don't believe that doctors understand this well enough to know if their methods of diagnosing are accurate.

I was never offered a blood test before I stopped eating gluten, and I was never willing to take the gluten challenge, so they did a biopsy of my small intestine and a DNA test. The biopsy looking for flattened celia was somewhat useless, since I had not been eating gluten for some time, and The DNA test came back as non-celiac. I posted on here wondering if there was anyone I still could have been a false negative, since my symptoms when glutened (bowel movement problems which I won't detail here, IBS, vitamin deficiencies, brain fog, etc) all point to celiac disease.

I know it shouldn't matter, but it does matter to me, because sometimes it makes me feel crazy when people treat this as a food fad when I tell them what I can and cannot eat. Some people can be very mean about it.

So, I called the doctor who did the DNA test to get my exact results. I hope this will lead to more clarity. I can't believe it took me a year and a half after that first posting to do so. I was just kind of proud of myself for finally asking.

Sometimes it's the little things....


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#638552 I Feel Like A Hypochondriac

Posted by VioletBlue on 10 September 2010 - 01:32 PM

No, it's not all in your head. It never is, but that's the best answer doctors can come up with. They get frustrated and intimidated when they can't "cure" someone with a pill or an operation and they tend to write you off as a head case. They know they can't cure psychological issues so that "diagnosis" lets them off the hook in their minds.

I think you know it's not all in your head. Just as I knew years ago that it wasn't all in my head no matter how many doctors tried to tell me it was. You know your body better than anyone else ever could; you live in it!

It does take some time to feel better. Some people take longer than others. Four months may not be enough time for you, particularly if celiac disease caused anemia or other vitamin deficiencies.

One of the symptoms for me of food allergies is exhaustion. I've weeded out other food allergies that way in addition to gluten intolerance. Could you have other allergies you're not aware of?

You have been through a lot, but one thing I've learned over the last couple years is that everything life throws at me is much much easier to deal with if I'm physically well. One little bit of gluten or soy or citrus and suddenly everything in my life gets blown out of proportion. There's a huge difference for me between how I feel when bad things happen and I'm physically well, and how I feel when bad things happen and I've just been CC'd by gluten.

And I know many others here have heard the "Itís all in your head speech" only later to find out it wasn't. You are not alone; many of us have been through that.




Just more of a rant than anything, but I'm tired of not feeling well and I've been on the gluten-free diet for 4 months and I'm still just as tired as I always (my major symptom). I just saw my general doctor yesterday and told him that I still wasn't feeling well and he said maybe some of my symptoms were "psychological" and that he couldn't do anything else for me...he was frustrated, and so was I. He said it might be depression that is making me tired. Well, I wouldn't be surprised. I have practically lost my job, am unsure about my future and was also a victim in a recent car accident (and my car was totaled and I have to buy a new one) and have been suffering from post traumatic stress disorder (I was in a horrible train accident 9 years ago) and nightmares, anxiety and poor sleep. I am having to take a nap nearly daily to feel like I can get through the day.
I also saw my sleep doctor in Indy recently (the one who originally got me tested for Celiac) and she said she thinks that I'm doing much better (I've gained some weight, but other than that, no improvement). Easy for her to say! I just feel like no one is taking me seriously in the medical field right now.
Now my mom is getting extremely stressed out and she is normally an optimist. I ask her what's wrong and she said that she's extremely worried about me right now, my job situation, my health, etc. And I can see that my dad is very stressed out, too. I feel like I have caused my parents all this stress and that makes me feel even worse.
I just want to talk with others who can sympathize and not think that this is "all in my head."


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#606284 Chicken And Gluten Intolerance

Posted by VioletBlue on 22 April 2010 - 12:48 PM

If I remember right from research several years ago; secondary sources are not required to be listed in detail on an ingredient list. What this means is if a manufacturer buys a product - say a spice mix - from another company and then uses that spice mix to make their product they are not required by law to list what's in the spice mix; it's a secondary ingredient. The same would go for things like preservative mixtures and flavorings.

This is why most but not all root beers on the market contain gluten but you may not find gluten listed in the ingredients. There are less than a half dozen makers of root beer flavoring, and every root beer maker, large and small uses one of those flavoring mixes. Roughly half of those flavoring mixtures use barley to make the flavoring. The root beer maker is not required to list the barley in their ingredients, and in fact they may not even know what is in the flavoring they buy.

So yes, "hidden" gluten is possible in any processed food, even if it's not specifically listed in the ingredients. This is why many of us shy away from anything processed that lists things like "Spice Mixture" or "Natural Flavorings" in their ingredients.




There really is no such thing as hidden gluten. This subject has been addressed in many of the books I have read by medical people on Celiac Disease.

I eat a lot of chicken and have never seen any brining solutions which contain gluten. I do buy all my meats from Whole Foods so maybe they are the exception but brining solution is plain old salt and sugar....no gluten. I have also never seen preservatives with gluten in them either and I am a label reader. Then again, pretty much nothing I buy have preservatives in them so maybe I am out of touch with regular supermarkets. Since wheat is one of the established allergens which has to be listed on an ingredient label, if present, where would gluten be hidden if it came from wheat? It would have to listed as an ingredient. Barley is not one which has to be listed but that's easy enough to figure out if you have been doing your homework on label reading and ingredients. Companies generally list all ingredients in a particular product and not leave any out. Unless a product is heavily processed or breaded/sauced, it should not contain gluten.


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#605245 Has Anyone Had Any Success With Tso/whipworm And/or Hookworm Therapy?

Posted by VioletBlue on 17 April 2010 - 11:21 PM

For me, I'd rather have worms and be able to eat bagels than to remain gluten-free for the rest of my life. Let's encourage further scientific study...


That's a really sad statement. You'd rather carry around a dirty life sucking parasite in your gut then avoid gluten. That's just sad.
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#444989 Ingredients In Hot Dogs

Posted by VioletBlue on 07 July 2008 - 12:44 PM

I love Oscar Meyer. They have a "naturals" line that is nitrite free as well as gluten free. It's the only hot dog anyone sells up here that I can eat because I'm terribly allergic to nitrites. Their whole naturals line is preservative free. And the hot dogs taste wonderful as long as you heat them up. They have a nice smokey flavor to them.


I'm not a fan of Oscar Mayer either, but I do like Ball Parks and John Morrell, both of which are gluten free.


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#332356 This Sucks With My Crazy-busy, Travelin' Life!

Posted by VioletBlue on 04 August 2007 - 09:37 AM

I think Celiac Disease can be a watershed moment in someone's life. I can't offer practical advice about how to navigate your life because I live a very different life.

One of the things I've come to realize is that life cannot be the same anymore; no getting around that. I think though that this realization is going to mean something different to each person who is diagnosed. My beliefs are such that I don't think anything happens without reason or purpose in our lives. But while believing that, I also understand that figuring out what that reason or purpose is ain't easy to say the least. I've said it before and I'll say it till the day I pass over, LIFE NEEDS TO COME WITH A FREAKING MANUAL.

I think the challenge, above and beyond the practical issues of what's safe to eat and where, is to find a way to accept Celiac Disease and acknowledge that this change now has a place in your life. To be very new age about it, you have to honor the change and accept it. I think that is the one thing that makes everything else easier.

How you do that, I don't know :blink: I'm still working on that. I was diagnosed in December of 06. Celiac Disease requires us to live very conscious lives which most people just don't do. We have to stop and read labels, ask questions and question answers. Being that conscious on a day to day basis is hard, particularly at first, but I think it leads to other realizations, and I think with time it helps you find a way to accept and integrate Celiac Disease into your life. It may lead you places you hadn't planned on going. I'm learning to be open to the options and possibilities and accept #%"&* change into my life :)

violet
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