Just Diagnosed This Morning
Posted 02 November 2004 - 08:26 AM
Here is my story...
I have been misdiagnosed for 10 years now with irritable bowel. It started in college and continues today. When i was at my doctors appointment in the year I told her the medicines were not working the way I had hoped. She sent me to a gastro specialists and he could not find the problem but put me on more medicine. Lets just say back in the spring i was on more medication than my parentsand only 28 years old. Now I have backed off of all of those because I think that some had side effects made me feel like crap. So now we cut all the other medicines for spastic colen and irretible bowel and am on 150 mg of Zoloft and feel so much better but not 100%. (that was over the summer)
When i was in the office last week she tested me for celic disease. Let's just say when I went into the lab, it took 20 minutes to find the medicial code because it was not in any of the books. This morning the test results came in positive. What am I supposed to do now??!! The nurse just told me to stay away from gluuten. I am stressing out about not eating my favorite foods even though I know they "go right through me" Food has been going right through me for years. I am used to it now.
Any advice on what to do next. Do i need to see a nutritenist?? Thanks guys and I look forward to hearing from some of you,(I hope).
Posted 02 November 2004 - 10:42 AM
This is pastor Dave's wife Christina. As a nurse I am very saddened to hear that you were just told to "stay away from gluten." As if that means anything. It is VERY important that you completely cut all of the wheat, barley, and rye from your diet as well as many "hidden" forms of gluten. (Gluten being the protein in wheat that you react to.) This sounds horrible at first, but it is not really so bad once you find a good store that sells gluten free foods and get a cookbook. I would recomend the gluten free pantry (online) as a good source of some easy meals and ebay as a great source of some gluten free cookbooks.
It is overwhelming to see all of the forums on this site, but take an hour or two and just browse, it will teach you so much. It is easy to say, "Food has been going right through me for years. I am used to it now." You may be used to it, but it is doing your body a lot of damage that can cause cancers, kidney problems, diabetes, neuropathies, and many other health problems if the damage is allowed to continue.
As to favorite foods, don't worry. You can still get great food, it might just take a little more effort. I make pizza and doughnuts for David (even put cream filling in the doughnuts!) A dietician may help you if you don't want to do the research on your own, but be careful - many don't know any more about celiac disease than it sounds like that nurse did. Don't listen to anyone who tells you it is okay to cheat every once in a while - it does not "just" cause an allergic reaction, it destroys your bowels!!!
Congratulations of finally knowing what is wrong. As difficult as it seems right now, you will feel so much better that it is worth the hassle.
Posted 02 November 2004 - 04:07 PM
I would first like to welcome you to the forum. You will always find great support and advice here. Everyone is really supportive, and when you first find out that you must go gluten free, you can use all the support you can get because it can be incredibly overwhelming....
Your story sounds alot like mine. I have had permanent diarrhea for years now. The gluten free diet was not working for me so they have recently done further testing. A colonoscopy and biopsy revealed I also have collagenous colitis, which is what causes the permanent watery diarrhea. Apparently, this is quite often misdiagnosed as irritable bowel syndrome. I have just started treatment for it so I have not really had a chance to see any results from it though....
The best advice I can give you is don't do what I did. I basically took the view that, "Oh well, stay away from bread, I will be okay....." After subjecting my body to further gluten in hidden sources for so long, I have delayed my healing by years.... I can promise you though that you will get so used to the diet and what you can and can't have, that it just becomes natural to you..... I go shopping, I know to get Aim toothpaste, Pantene shampoo, etc.. (there is hidden gluten in a lot of toiletries.....). Even my husband has become quite used to shopping for me and knowing what to get.... There is so much more than just "staying away from bread", but knowledge is power, and if you do your reading, you will realize that you can accomplish this..... Print out lists what okay foods so when you go grocery shopping, you have it right there which brands to buy, etc.
I hope to see you around here getting the support, we will all be here for you!
Welcome from Canada,
positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)
Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.
Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......
"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden
Laughter is the shortest distance between two people.
-- Victor Borge
"An optimist laughs to forget. A pessimist forgets to laugh."
"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Posted 02 November 2004 - 07:38 PM
I would like to welcome you to the board! It is an awesome board and you will learn a lot from it!I have been diagnosed since I was a baby, 20 months old. So I know a lot about it. If you have questions you can always e-mail me or PM me.
I have one huge comment:
And it is think positive not negative. When you're negative you get depressed. If you go to the stor and all you see is food you can't eat, you're going to think that you can't eat anything.
Instead you should think that 'Wow I can eat that, that is awesome." you'll be happier. YOu will just be in a better mood because you will be like, I didn't kow I could have that, and that is much better than being like, wow this sucks, i can't eat anything.
Also don't expect to feel better in one day. It may take a couple of weeks to feel a difference because you are so badly damaged, but once you start feeling the difference, you will feel a whole lot better, and it does get better. I promise you it will get better.
People think that this diet sucks, but I have lived with it all my life and there was no gluten-free food back then 13 years ago. NOw there is so much better food and much more variety. I had gross food when I was little, but every year it got a little better, and then in the last two years the food got SO much better. So you are lucky that there is so much food now and it is so much better.
Being diagnosed it a privilage, you won't be sick anymore and you will have so much more energy than you have ever had.
I just want to say that you will be much better as time goes on and you will be glad that you have been diagnosed early and that you won't have to suffer more for the rest of your life and you will feel much better soon.
Posted 02 November 2004 - 08:38 PM
I'm so happy that you have finally learned what was causing your problems. Thank God! Now you can move toward good health, and find out what living is really about.
I've been gluten free for many years, along with milk, dairy, egg whites, and yeast free as well. I feel great! There are so many foods we can eat. All the natural, mostly unprocessed foods, like fruits, vegetables, meats, poultry, fish, nuts, seeds, beans, rice, potatoes, etc. And now there is even soy ice cream, which is so good.
What have you always dreamed of doing? Start dreaming again, because with your renewed health, you will most likely be able to do anything you want. Plan on feeling as you did when you were even younger. Make a list of all the things you've wanted to do, because you will probably be doing them soon.
You will find that reading labels is actually interesting and fun, and it is so intriguing when you see something advertised publicly that you may be able to eat, but that you thought was off-limits. Food companies are coming up with a wide variety of foods each day, which gives us all hope. Restaurants are beginning to wake up to the fact that 11 million Americans have food allergies.
It's going to get better for us. Welcome to the group! Welda
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