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Writing My Paper
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Hello everyone,

I've been gluten-free for about 1.5 years, and now i am finaaly achieving more than sticking to my gluten-free diet daily, i'm graduating from college! I am writing my final paper on celiac disease, and i'm trying to take an educational approach.

If all goes well my story will get printed in some of the local Orange County papers, maybe i'll try and submit it to magazines too. I am looking for some interesting/ helpful tips from everyone on this board. What are the things (big or small) that has made life easier as a Celiac? What was the hardest thing to give up and did you find something to replace it with? Any tips on keeping on doctors for diagnoses, or even like the last question, what to do about communion? Both good things and bad things will be helpful to my paper. When it's done i'll post it here for everyone to read too.

I have tried to go through these boards and find some answers, but don't want to include anything I don't get permission for writing. So if people will be so kind to post them on this message board over the next couple of days, i will include them in my paper.

If you have any questions, please email me at nadia_van_rooyen@yahoo.com or jordanandnadia@yahoo.com

thank you much!

Nadia :D

by the way, i took charge with my wedding and my whole cake is going to be gluten-free!!!!

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Ads by Google:

The biggest realization: realizing that food is not as important as people.

The biggest frustration: restaurants not taking your requests seriously.

The biggest skill: learning to cook in a way that will keep you cooking.

The biggest happiness: not feeling sick!

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in the procces of writing a gluten/wheat free cookbook

inspirded to write it because i saw how depressed my friend was with the limitations on the foods available to her. i'm creating simple recipies with delicious results. i have lost 40 lbs. eating these foods and she has maintained her weight.

feel free to write @ garcia3169@bellsouth.net buen apetito!

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Biggest frustrations: I have been sick with stomach and weight problems since I was a small child. I am on my second surgery to look for problems and had one surgery to remove my gallbladder. And after all these years more doctors told me it was a female problem or just in my head. Now I have an actual answer to what is wrong (Celiacs) and a way to fix it (gluten-free for life).

Biggest happiness: Knowing that I will be here to watch my daughter grow up and I will not be too sick to be a part of it anymore. Second biggect hapiness, I got the all clear fromthe doctor to get prgnant again. YEAH!

Family: My husband, daughter, and friends are FANTASTIC about the gluten-free diet. My family (mom, dad, brothers, aunts, uncles, etc.) not so good. Luckily they do not live nearby. I was never tested for celaics as a child even though a doctor said my vili were flat, and a cousin had been diagnosed with Celiacs. I come from a family of stick your head in the sand and all your problems will go away.

My realization: The people who love you and respect you are your family be it through blood or friendship. Children deal with problems much better than adults. And food is not the center of every social occassion. It's a wonderful thing to be gluten-free and healthy!

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Biggest Frustration: Being sick and having stomach problems, gas, bloating, etc. for seven years...and not knowing what it was....and having people think that I was "getting myself sick" by stressing out....etc.

Hardest Thing to Give Up: Pizza...I thought it would be bagels, since I ate them every morning and loved them, but I found a decent replacement for the bagels early on. I was thrilled to find a replacement for the pizza: Chebe, which is phenomenal...(you can only order it online at http://www.chebe.com, but they don't charge shipping! :D Pizza is now no longer a difficulty...and the rest of my non-celiac family like it as much as regular pizza that when we have pizza for dinner, the whole family eats gluten-free.

What Made Life Easier as a Celiac: First, my family, who have been supportive, helpful, sympathizing, and understanding, especially my mother for finding so many great replacements for the foods I loved. Second, this board...so many questions have been answered; either by posting myself, or by reading posts. I've learned so much from this board, and it's nice to have somewhere to get info. and talk to people who understand.

Biggest Happiness: The feeling of freedom (which is starting to come) when you don't have to worry about getting sick, making up work, etc. and you don't have to endure the cramps, vomiting, nausea, gas, bloating, diarrhea...etc.

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Congratulations! Is that Orange County CA? Or NY? (I'm in Huntington Beach CA.)

Biggest Frustration: Being horribly ill much of my adult life and not knowing why...but feeling like I was losing my mind. Missing out on a lot of fun with my kids.

Hardest Thing to Give Up: Hands down, Take-out Chinese!

What Made Life Easier as a Celiac: The Internet.

Biggest Happiness: Because I was dx'd, my 11-year-old daughter was dx'd, too. Who knows what could have happened to her?

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Good luck with your paper.

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I'll add my input to answer your questions:

WHAT MADE LIFE EASIER AS CELIAC: SUPPORT from others including a next-door neighbor whose husband is celiac, a local celiac support group (esp. the leader), THIS MESSAGE BOARD and my husband (after I finally told him what I needed). :rolleyes:

HARDEST THING TO GIVE UP: Freedom to walk into any restaurant and order anything on the menu without worrying how it will affect me. :(

SOMETHING TO REPLACE WHAT I GAVE UP: A local totally gluten free restaurant owned and operated by a celiac who brews her own gluten free beer, makes a Chicken Florentine that beats the Coq au Vin I had in Versailles and fantastic gluten-free peanut butter cookies (as well as gluten-free versions of other things we might miss like burger, fish & chips, sandwiches, pizzas, cookies, breads, etc.). :P

TIPS FOR KEEPING ON DOCS FOR DX: ZIP. I gave up after my own PC diagnosed me with 'IBS' 7 years ago and recommended I follow the IBS diet which told me to eat more whole grains (esp. wheat bran) which made my symptoms worse! :angry:

WHAT ABOUT COMMUNION: I take the juice (wine) and pass the 'bread' plate, but we just pass the elements in our church now. 'So glad we aren't 'served' anymore, so nobody (except my husband) notices I don't take the 'bread'. ;)

WORST THING ABOUT CELIAC: Being or learning I was? 'Sorry I forgot how you asked that question. WORST ABOUT BEING: All the excruciating pain I suffered and other confusing but less painful symptoms I experienced most of my life (I had 'symptoms' from early childhood which were misinterpretted by my parents and misdiagnosed by my doctors) BEFORE learning I had celiac. WORST ABOUT LEARNING: Fear everytime I had a gluten 'slip' (from mystery ingredients or cross-contamination) that I was further damaging my intestines which have suffered so much celiac damage for soooo many years. :o

BEST THING ABOUT CELIAC: Again I'll answer with being and learning: BEST ABOUT BEING: I'm a LOT more vigilant about choosing foods which are beneficial for my body, not just what tastes good and satisfies hunger, because longterm malabsorption has deprived me of vital nutrients and zapped my energy too long. ;) BEST ABOUT LEARNING: FINALLY an explanation for all those painful and embarassing symptoms as well as a treatment to resolve the pain and 'symptoms'. :D

I WANT TO ADD: I don't consider learning I have celiac diseasea burden, but rather a blessing. I'm SOOOOO glad to finally experience less pain (I went from excruciating to tolerable to no discomfort for short periods) so I can eat without fear that I'll hurt for the next 4-12 hours. I used to eat from pain of starvation (because I avoided eating until my blood sugar was so low I had to eat) to pain of dull bloating discomfort followed by sharp cramping pain. I LOVE knowing I can eat gluten-free foods without discomfort. Maybe people, who see their celiac diagnoses as a burden, didn't suffer enough pain to realize the benefits of going gluten free. ;)

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I know this is an old thread but how did you do on your paper?

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If you go to a member's profile by clicking on their name, you can see when they last posted. For jordanandnadia, it was November 2004.

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BIGGEST FRUSTRATION: being sick my whole life with seemingly unrelated symptoms, being told over and over that it was "anxiety" or "all in my head" when I knew I had no control over it. Feeling hopeless like I would be sick forever, and nobody cared.

Hardest Thing to Give Up: cheese fries at outback steakhouse, they were my comfort food.

What Made Life Easier as a Celiac: Gluten free animal crackers, that look like everyone elses. (well, it made things easier for my girls, haven't figured out my "super great thingy" yet)

Biggest Happiness: knowing that I wasn't losing my mind, knowing now that ALL of my sypmtoms were caused by celiac, and that soon when I am healed up, I won't be sick anymore.

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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
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