Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Writing My Paper
0

11 posts in this topic

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!!!!

0

Share this post


Link to post
Share on other sites


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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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?

0

Share this post


Link to post
Share on other sites

Good luck with your paper.

0

Share this post


Link to post
Share on other sites

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. ;)

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,665
    • Total Posts
      921,655
  • Topics

  • Posts

    • You're welcome! Yes, I too, hate waiting for lab results. Ugh!
    • I understand this is not a doctor's office and that I need proper testing done to rule out Celiac disease, however, I am stuck waiting until November to even see a GI doctor. So I need some suggestions soon on which test to go for first and what to do as I wait. Also do note, I am 28 years old.

      Right now, the most suspecting culprits to my symptoms have been Gallbadder, Celiac disease, and IBS. I have also been recently diagnosed with pre-diabetes and I am obese.  My Ultrasound and CT scan have all come up as normal and no signs of gallstones. However, I was in extreme pain as my upper abdomen was examined during the ultra sound. My white blood cell count also seems to be high at 12,000 but all blood work came back normal for liver and everything else.

      Symptoms included are: diarrhea
      yellow-stools (Sometimes foul smelling but always sink)
      light gnawing pain in area a few inches above belly button
      burning in chest
      sometimes pain below upper right rib cage.
      Tenderness all around the upper abdomen, but more so on the right and center.
      burping frequently after meals
      Gassy
      bloating in abdomen The pains used to come and go for the past few years as something very mild, but then the yellow stools happen at least four months ago and at a constant rate. Everyday it is either yellow or orange.  Sometimes the stools are lose and other times they are not. Two months in, I was finally diagnosed with pre-diabetes and have been having a strict low calorie and non fatty diet.

      So far the upper right pain has subsided but the pain above my belly button would continue. The gassy and bloated feeling would come and go as well. I get severe heart burn after almost every meal. But I felt it especially after eating whole wheat sandwiches or whole wheat pasta. I however don't feel it when I eat a Nature Valley granola bar, or pack of peanut butter crackers. I also had a chicken and vegetable stir fry with soy sauce cooked in that also had little effect on me. A bowl of cereal also made the heart burn act up pretty bad. I sometimes feel numb or light headed after various meals. Especially larger ones. In fact, it seems the more I eat, the worse I feel. But the less in the stomach, the more the pain above my belly button starts to act up.

      It is usually in the morning and afternoon I feel the most with gas and bloating. Especially after any large meals from the previous day. Despite the diet and work outs I have had, nothing has changed the stools. However, taking fish oil pills has greatly reduced the pain in my upper abdomen as well as the pain  in the the area above my belly button. My question now is, is there a very likely chance of this being celiac disease? Should I go on a gluten free diet to test since I Have to wait so long? Also, which test should I ask the doctor for first, as it will take a GREAT deal of time to pay off each one. Colonoscopy, HIDA scan, or endoscopy. 

      Again, I understand this isn't a site to get compete medical advice or to know exactly what my illness is, but I am trying to narrow down the possibility or what is most likely. If this has a chance of being celiac disease, I would rather know sooner than later.
    • Thank you very much for all the info Squirmingitch. The doctor told me as we were talking he was going to order some tests with urine so I don't know why he didn't mark that. Maybe he forgot as we were talking? Duly noted about the bladder Cancer to watch out for too. Doctor said it will take about a week to get the lab results back usually from this lab. The wait will seem like forever I'm sure. Yes I will press to have the other tests done too if this one comes back negative.
    • http://www.cureceliacdisease.org/screening/ Was your hubs tested for total IgA to see if he's IgA deficient? Read this thread: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83660
    • Yes, bone density problems are all part of the celiac "umbrella" so to speak and yes, osteoporosis tends to happen more rapidly and at earlier ages than normal when malabsorption is happening. At age 43, it's not normal to have osteoporosis as you describe so that's another part of the jigsaw puzzle. Time to receive blood test results back from the doc are entirely dependent on the particular lab they were sent to. Yep, it's time for you to start keeping a very close check on the PSA in light of your father having had prostrate cancer. I would think you should get a PSA every year. I really would have liked to see him do a urinalysis. With the prostrate cancer your father had, it would seem a close watch should be kept on you for bladder cancer as well. The first symptom of that is blood in the urine but it's generally microscopic before you're ever able to actually see it. That happens to be the 8th most common cancer in men & it's moving up in the rankings. I know this because my hubs had it. The good news is that it's also one of the easiest and most successfully treated provided it's caught early. Certainly starting @ age 50, men should see a urologist every year. BTW, in the last year before I found out I was celiac, I turned up with microscopic blood in my urine. I got it checked out thoroughly since I know about bladder cancer & all tests, ultrasounds, cystoscopy, CT scan etc... turned out fine. The docs were stumped & finally said, "apparently that's just what your body does". Guess what? That's not "just" what MY body does. Once I went gluten-free, I have had no more microscopic blood in my urine. Interesting eh? Before now I didn't realize you are in Canada. The doc didn't do the full celiac panel but I understand the initial screening protocols in Canada only order the TTG but if that comes back negative be sure & press for the full panel as cyclinglady said. We have several here who tested like cyclinglady so it's not a rare thing, it's just not the norm. I'm glad he's doing the B-12 & Ferritin -- those can be big clues.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,663
    • Most Online
      3,093

    Newest Member
    Steph0903
    Joined