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About Me
I was just recently diagnosed with Celiac Disease. However my stomach issues started with my ovaries cystizing and rupturing in 1997...... They did emergency surgery and while I was in the local hospital I attained MRSA (what a gift!! LOL) and it set into my gut. The MRSA basically ate my intestines up from the outside in, causing the severe diverticulits. After months of IV antibiotics and numerous pain meds and three subsequent abdominal surgeries removing the sigmoid, transverse and transending colon (total of 5 abdominal surgeries from the breast bone down over a three year period..... ) The Dr's basically said you are going to just have to live with this... "D" ten times a day on a good day, bedridden on bad days, severe abdominal pain and too many RX to mention.
I took myself off of a lot of the meds and stopped eating raw vegtables, corn, popcorn, seeds, anything fried or hard to digest.... ect out of my diet and it helped...... but not enough, so I finally requested to see a big city hospital doctor LOL at John Hopkins in Baltimore. I only have a few inches of intestines left and I know, if I don't get whatever is going on under control, I will end up on a bag and I am willing to do anything to avoid that.
I go back up to John Hopkins on March 10th and they are supposed to start me on antibiotics and new RX's. With removing the above foods and then the gluten foods.... LOL it sounds like it leaves me with meats and expensive gluten free foods. So it will be an adjustment.....
I am just feeling a little overwhelmed at this point and I know it sounds strange but I am glad to finally have the Celiac diagnosis so that I can really fight back and hopefully get the "D" and pain under control...... and it is a great feeling to tell my old Dr's that there really was a reason for the pain!!! LOL finally!!!
With being newly diagnosed I am open to any suggestions on how to cope. Your advice would be greatly appreciated!!!!
I took myself off of a lot of the meds and stopped eating raw vegtables, corn, popcorn, seeds, anything fried or hard to digest.... ect out of my diet and it helped...... but not enough, so I finally requested to see a big city hospital doctor LOL at John Hopkins in Baltimore. I only have a few inches of intestines left and I know, if I don't get whatever is going on under control, I will end up on a bag and I am willing to do anything to avoid that.
I go back up to John Hopkins on March 10th and they are supposed to start me on antibiotics and new RX's. With removing the above foods and then the gluten foods.... LOL it sounds like it leaves me with meats and expensive gluten free foods. So it will be an adjustment.....
I am just feeling a little overwhelmed at this point and I know it sounds strange but I am glad to finally have the Celiac diagnosis so that I can really fight back and hopefully get the "D" and pain under control...... and it is a great feeling to tell my old Dr's that there really was a reason for the pain!!! LOL finally!!!
With being newly diagnosed I am open to any suggestions on how to cope. Your advice would be greatly appreciated!!!!
Community Stats
- Group Advanced Members
- Active Posts 16
- Profile Views 1,569
- Member Title New Community Member
- Age Age Unknown
- Birthday Birthday Unknown
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Gender
Female
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Interests
I am a social Worker, working with Foster Children. I love to paint and do anything involving art. I love to play on the beach and spend time with family (especially my grandbabies) and friends.
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Location
Southern Maryland
Topics I've Started
Is There An App For That?
21 March 2011 - 07:40 PM
I was in Safeway today grocery shopping and noticed they have color coded a lot of items that are gluten free!!! I was so excited, because I was actually able to buy items that I didn't realize were gluten free!! But it made me wonder...... since there APPS out there for the smart phones for almost everything..... Does anyone know if there is an APP out there to assist with selecting gluten free foods?
Bleeding And Abdominal Pain
18 March 2011 - 09:23 AM
Hi all~~~~
I was diagnosed a few weeks ago with ulcerated colitis and celiac disease. I have been gluten free for 9 days. They started me on Asacol 3 days ago and I have been having abdominal and intestinal pain since I started the gluten free diet. I started bleeding yesterday. Has anyone else had these symptoms from starting gluten free or starting Asacol?
I was diagnosed a few weeks ago with ulcerated colitis and celiac disease. I have been gluten free for 9 days. They started me on Asacol 3 days ago and I have been having abdominal and intestinal pain since I started the gluten free diet. I started bleeding yesterday. Has anyone else had these symptoms from starting gluten free or starting Asacol?
What Pain Meds Have Worked The Best?
10 March 2011 - 08:25 PM
Just diagnosed with Ulcerated Colitis and Celiac, Diverticulitis and IBS. I was using extra strength tylenol during the am and darvocet at night or when the pain was really bad. They recently pulled Darvocet off of the market so am using extra strength tylenol as much as possible and Dr. gave me Ultram today. What has worked best with others for pain?
Thanks in advance!!!
Thanks in advance!!!
Diagnosed With Celiac And Ulcerated Colitis Has Anyone Ever Been On Asacol? Please Tel...
10 March 2011 - 08:07 PM
Just got back from John Hopkins and received the formal diagnosis of Celiac and Ulcerated Colitis, diverticulitis, IBS and severe infection in stomach and intestines. They stated that they need to address the Ulcerated Colitis first with Asacol...... has anyone else been on this? They have me taking 800 mg 3 times a day for 4 months. They suggested the gluten free diet and stated that once the ulcerated colitis is under control, then they will deal with the infections.
I am really bummed and really could use some support. Good news was the DR. is going to write a letter to my insurance company(Blue Cross Blue Shield) to insist that they cover the cost of me seeing a dietician since it isn't just one diagnosis. So hopefully they can help me figure out what I can and can not eat. I guess I am just feeling very overwhelmed right now and need assurance that it will get better. I am so sick and tired of being sick and tired!!
I am really bummed and really could use some support. Good news was the DR. is going to write a letter to my insurance company(Blue Cross Blue Shield) to insist that they cover the cost of me seeing a dietician since it isn't just one diagnosis. So hopefully they can help me figure out what I can and can not eat. I guess I am just feeling very overwhelmed right now and need assurance that it will get better. I am so sick and tired of being sick and tired!!
List Of Restaurants That Offer Gluten Free Menus?
02 March 2011 - 08:00 PM
Hi all~~~~~~
I am newly diagnosed with Celiac Disease (I actually go back to John Hopkin's next Wednesday to start new antibiotics, RX's and attain info on celiac disease) One of my many current dilemas is that I am a Social Worker working with Foster Children, which means I am on the road constantly and work extremely long hours.... (14 hour days at work are not unusual) Does anyone have a list of restaurants that offer gluten free menus? Or suggestions on how to go gluten free while on the road?
Thanks in advance!!! Any and all advice is welcome and extremely appreciated!!
WitchyWoman
I am newly diagnosed with Celiac Disease (I actually go back to John Hopkin's next Wednesday to start new antibiotics, RX's and attain info on celiac disease) One of my many current dilemas is that I am a Social Worker working with Foster Children, which means I am on the road constantly and work extremely long hours.... (14 hour days at work are not unusual) Does anyone have a list of restaurants that offer gluten free menus? Or suggestions on how to go gluten free while on the road?
Thanks in advance!!! Any and all advice is welcome and extremely appreciated!!
WitchyWoman
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