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Living in the Garden of Eden

 I am Celiac. It is a self-diagnosis and I have yet to find a doctor who even recognizes the disease. I'm still looking. In the meantime, I maintain my own health and try to help others who exhibit the symptoms. Most will refuse the elimination diet. I have learned to accept that fact and pray that those people are not actually gluten intolerant.

This is not a death sentence. If you can use a computer, you live in an area that allows for three meals a day. That is a luxury for a large percentage of the world. Our children are not chewing on sticks as a meal replacement. We are privileged to live in the Garden of Eden and the fruit of all the trees is for our food...except one. If you hang around that tree, it'll start looking good and smelling good and you'll say, "what the heck?" to the consequences. Stay away from it and you'll stay healthy.

There
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are so many foods available to us that are naturally gluten free and tasty. Many societies actually enjoy a gluten free diet regularly. Thai food is almost all gluten free and our new Mexican immigrants have brought with them some wonderful gluten free goodies along with the recipes and kitchen tools for making  them. We have the world at our fingertips.

I wish to encourage my fellow Celiacs to get creative. Become detectives and seek out new foods. Look on this as an adventure, not a prison. I discovered what made me sick when I was 50, having been sick all that time. It makes me glad to find a sad message from someone under the age of 10 who's been diagnosed. That one won't have to be sick as long as I was. To that one, get crackin', and find those gluten-free nuggets and create some desserts to feast our eyes and mouths on. The ball's in your court.

I am Yvonne, signing out.

As always, Celiac.com welcomes your comments (see below).


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2 Responses:

 
Monika Draga

said this on
27 Feb 2008 10:55:30 PM PDT
Hi Yvonne,

you are absolutely right! We live in a Garden of Eden but there are many poisonous snails ...

It seems to me that your story could be mine. Discovered guten intolerance myself after 50 years of suffering. My way to cope with this? I moved to the sunniest place of my country (Germany) to put up a project for gluten intolerant holiday makers - as an attempt to make visible our Garden of Eden. Interested to read more about it? I need someone & something to encourage me to write about it in English.

Greetings from Germany,
Monika

 
Carol Frilegh

said this on
29 Feb 2008 10:08:07 AM PDT
This week it's no garden here. My Latex Allergy and MCS have flared from renovations in a nearby suite and I am reacting to so many things I gave to do the Paleo Diet for a while.




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Celiac.com Celiac Disease & Gluten-Free Diet Forum - All Activity

Hello I was diagnosed Dec 15 of last year and went totally gluten-free the next day. I actually got worse before I got better - it's a steep learning curve - but now, 4 1/2 months later I'm finally seeing improvement. Hang in there.

Called my GI doctor today to make sure he is going to look at my small intestine and do biopsy for Celiac for my EGD and he is. Thanks for the tip everyone about have to start eating gluten again. The office told me to break my gluten free diet and start eating gluten everyday until my EGD. Here's to being miserable again for a few weeks ???

I can completely relate! The horrible mental effects that I have been living with for years is the absolute worst side effect of eating gluten, HANDS DOWN. Worse than the endless tummy aches, worse than the constant diarrhea, worse than the week long migraines, worse than the daily fatigue and body pain.... I honestly though there was something seriously wrong with me and hated my life because of how I felt mentally. I always felt like I was drowning, not in control of my thoughts, trapped in some unexplained misery. My head was always so cloudy, and I was mad because I always felt so slow and stupid. I would feel so lethargic and sad and empty while at the same time be raging inside, wanting to rip out of my own skin. I was mean, terrible, would snap at the people closest to me for no good reason and just felt like I hated everyone and everything. Think of how crappy you feel when you have a terrible cold and flu - I felt that crappy, but mentally. Some days were really bad, some were mild. I always thought it was because I was getting a migraine, or because I had a migraine, or because I had just overcome a migraine, because I didn't sleep well, because....always a random reason to justify why we have all these weird unrelated symptoms before we get diagnosed. I'm happy to say that I have been gluten-free for about 2 months now and though I am not symptom free, the first thing that improved was my mood. I no longer feel foggy and miserable. For the first time in years, my head is clear, I can actually think, and I feel positive and like I am in control of what's going on in my head. I don't hate the world. I don't spend every day bawled up on the corner of the couch depressed and angry. The release of these horrible symptoms is enough to never make me want to cheat, no matter what I have to miss out on. So insane how a little minuscule amount of a stupid protein can wreck such havoc.

I wanted to collect some of the info on NCGI in one place so that visitors who test negative but may still have an issue with gluten can be directed there. I'll add to this post as I find new links, but feel free to add or contribute anything you think may be of use! Matt --- Useful links: An overview from Alessio Fasano, one of the world's leading researchers on celiac and gluten sensitivity: https://www.youtube.com/watch?v=VvfTV57iPUY Umberto Volta, another leading researcher in the field gives some of the latest findings about NCGI: Presentation slides from Dr Volta's visit to Coeliac UK - NCGS about halfway through A scholarly overview from celiac disease magazine: https://www.researchgate.net/profile/Knut_Lundin/publication/232528784_Non-celiac_Gluten_Sensitivity/links/09e415098bbe37c05b000000.pdf A good overview from a sceptical but fair perspective: https://sciencebasedmedicine.org/a-balanced-look-at-gluten-sensitivity/ Another overview: https://celiac.org/celiac-disease/understanding-celiac-disease-2/non-celiac-gluten-sensitivity-2/ University of Chicago's excellent celiac site's take: http://www.cureceliacdisease.org/category/faq-non-celiac-gluten-sensitivity/ A compelling account in the British Medical Journal from an NCGI patient: http://www.bmj.com/content/345/bmj.e7982 Here's some positive news about a potential new test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 NCGI in children: NCGI and auto immune study: https://www.ncbi.nlm.nih.gov/pubmed/26026392 Also consider: Fodmaps: http://www.kcl.ac.uk/lsm/research/divisions/dns/projects/fodmaps/faq.aspx This Monash study: http://fodmapmonash.blogspot.co.uk/2015/03/the-truth-behind-non-celiac-gluten.html suggested some who think they're reacting to gluten should actually be reducing fodmaps Sibo: http://www.webmd.boots.com/digestive-disorders/small-intestinal-bacteria-sibo

I was just diagnosed in March and I totally feel you. I'm having a hard enough time with determining which lip glosses are safe, let alone all my face products etc. I feel like this 'grey area' is the biggest annoyance with Celiac. So many foods/cosmetics I thought were safe after reading the ingredient list are actually not safe at all! One website says it's safe, one says its not. All these unfamiliar ingredients and even after googling term after term still so many grey areas!! I'm sure in time it gets easier and second nature and you learn by trial and error but holy this constant uncertainty is super annoying haha.