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

Never Let Anyone Tell You This Isn't Serious
0

32 posts in this topic

Hello to my friends,

Last year in September after being ill for sometime I was diagnosed with Celiac. We took everything very seriously and began our gluten free life. All was well until December when I started losing weight again and feeling really bad. To make a long story short I saw different gastros, I was told it was all in my head, that I must be cheating and eating gluten, and my personal favorite, that I had worms. Finally after months and months I found a gastro who took me seriously. He did start me on Entocort to control the big D and I did feel a little better, however the weight loss continued, fatigue, and then it became hard to eat, and I began to have trouble swallowing. He decided it was time for another endoscopy, well the results came back yesterday, and I was diagnosed with Adenocarcinoma of my stomach. It is not my intention to scare anyone but to let anyone who has any doubts that Celiac disease is not serious that it is, it defenitely is.

In just 3 short hours we are off to the medical center to meet the with doctors so that they can stage my cancer, and come up with a plan to beat this. I guess I just wanted to share this with my friends who really understand what it is like to have Celiac, and the obstacles that we face everyday. I will keep you all in touch, take care of yourselves, and God bless.

0

Share this post


Link to post
Share on other sites


Ads by Google:

So sorry to hear this. Please let us know how you are doing.

(((((((((((((((((((((((HUGS)))))))))))))))))))))))))

0

Share this post


Link to post
Share on other sites

Really sorry to hear your news. Thinking of you.

0

Share this post


Link to post
Share on other sites

I'M SO sorry to hear about your DX. I can't for the life of me understand why Dr.s don't take us seriously when we tell them something's wrong! We know our bodies better than anyone.

I had colo-rectal cancer at the age of 46, stage 1. I knew something was wrong, even though they say most people have no idea they have it. It took me going to two different Dr.s and several visits with each before I was finally given the scope I needed for a DX. :angry:

Good luck to you in your treatment. I hope it's just stage 1. I found that once I had a DX they moved pretty fast in treating it, so be ready for a bit of a whirlwind.

(((hugs)))

1

Share this post


Link to post
Share on other sites

Oh, Bonnie! Thank you for sharing this. Good luck with the doctors today.

0

Share this post


Link to post
Share on other sites




I'm so sorry to hear this. Good luck today, and let us know if we can help.

0

Share this post


Link to post
Share on other sites

I'm so sorry to hear of your illness. Please don't hesitate to ask for support here if you need it. ((( hugs )))

0

Share this post


Link to post
Share on other sites

I hope it goes well for you now that you have a diagnosis! As for those other doctors, I hope someone can call them on your behalf and inform them of the cause they missed so they will be better informed of the possibilities in the future.

0

Share this post


Link to post
Share on other sites

Sorry to hear of your diagnoses! I'm glad you were able to find a doctor who took you seriously!!! Good luck at the doctors!

0

Share this post


Link to post
Share on other sites

I'm so sorry for your diagnosis. Best of luck to you!

0

Share this post


Link to post
Share on other sites

Oh Bonnie, I am so sorry about your diagnosis. Stay strong and fight, and yes, please let us know how you are doing. {{{hugs}}}

1

Share this post


Link to post
Share on other sites

Best of luck to you! Thank you for sharing and keep us informed.

0

Share this post


Link to post
Share on other sites

That really stinks! But it seems like you have a good attitude. Maybe all of us who have had to stand up to people who "think it's all in our heads" have learned to be stronger than the average person. And that strength will see you through. You'll be in my prayers.

0

Share this post


Link to post
Share on other sites

Hugs and hugs and hugs for you! I pray that it is at an early stage and you get healed fast. There is so much they can do for cancer nowadays. It's not like before where there were just a few treatments. My dad has cancer and they are doing amazing things to treat him. Hang in there and come here for support when you need it.

We celiacs have to stick together and lift each other up.

1

Share this post


Link to post
Share on other sites

Just an update, home finally. The cancer is in the early stages and has not spread to any other parts of my body. I will have two months of chemo, then surgery to remove my stomach, they will make me a new stomach from my small intestine, then after I have healed from the surgery two more months of chemo. The doctors are very optimistic about a full recovery. I did find out from the doctor today that they will not do any radiation, because of the Celiac disease, they told me it would be too hard on my body, because radiation causes the Big D, wow you learn something new everyday. I go into my surgeon on Friday so they can put in a port in my chest for the chemo, and then the chemo will start next Tuesday. I am in a very positive mind set at this point, and I will beat this cancer!

Thank you all so much for your support, this forum is like my second home, thank you again and I will keep in touch.

1

Share this post


Link to post
Share on other sites

Geez L'weez. So much to deal with. :(

Stay strong and I hope everything goes smoothly and you recover quickly.

0

Share this post


Link to post
Share on other sites

Wow, that sounds like an ordeal but I'm very glad to hear it hasn't spread. Thank you for updating us and I hope you have a compete remission and recovery.

0

Share this post


Link to post
Share on other sites

I'm so glad to know you're in the early stages. Treatment will still be a tough thing to go through, but at least they have a treatment plan worked out for you.

Please keep in touch when you feel like popping in? We're all rooting for you!

0

Share this post


Link to post
Share on other sites

So glad to hear it was caught in the early stages! It's so amazing what modern medicine can do! Good luck with your treatment plan! I hope it's not to uncomfortable for you!

0

Share this post


Link to post
Share on other sites

Just an update, home finally. The cancer is in the early stages and has not spread to any other parts of my body. I will have two months of chemo, then surgery to remove my stomach, they will make me a new stomach from my small intestine, then after I have healed from the surgery two more months of chemo. The doctors are very optimistic about a full recovery. I did find out from the doctor today that they will not do any radiation, because of the Celiac disease, they told me it would be too hard on my body, because radiation causes the Big D, wow you learn something new everyday. I go into my surgeon on Friday so they can put in a port in my chest for the chemo, and then the chemo will start next Tuesday. I am in a very positive mind set at this point, and I will beat this cancer!

Thank you all so much for your support, this forum is like my second home, thank you again and I will keep in touch.

Bonnie...you are one tough gluten-free cookie! I wish you all the best and know you will be here years to come, posting on Celiac.com.

Keep in touch with us so we can cheer you on! :D

0

Share this post


Link to post
Share on other sites

Hooray for you for getting second opinions!!! Hooray for listening to your body and trusting your instincts!! Boo for cancer!

0

Share this post


Link to post
Share on other sites

Wonderful news that it's in the early stages and there is treatment for you. You advocated for yourself and got answers quickly.

You can beat this. Cancer is treatable these days.

Do everything you can to support yourself nutritionally too. I started juicing lots of green veggies and then adding apples, carrots and oranges to flavor it up. It is helping me a lot.

Hang in there and keep posting when you need us.

0

Share this post


Link to post
Share on other sites

Wow...very tough road...but good that there is a winning plan. You are in our family's prayers tonight and in the days to come...keep posting...so important for the rest of us to hear your story -- more important for us to support you and your family too!

0

Share this post


Link to post
Share on other sites

Fight like a girl, bonnie blue! B)

1

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
      104,358
    • Total Posts
      920,531
  • Topics

  • Posts

    • Here's another thing.  Feeling deprived?  Order two of the same item.  I was hungry by the time dinner arrived! 
    • The doctors just made me feel like I was crazy because they did not have a clue of what was wrong with me. I did a stool test (positive) and I did a genes test (positive for two gluten sensitive genes, one in each chromosome).  Blood test are not so foolproof, if you read the comments/experiences in such topic you will see the problems. Biopsy can give a false negative if taken from an undamaged area. If you have medical problems that go away once on a gluten free diet then gluten is the problem. The medical establishment profit from managing your medical problems and big pharma makes money by pushing pills so we need to be careful because they won't benefit if a gluten-free diet solve your problems. Since I started a Gluten free diet I have been free of the following: (all related to Celiac)  Irregularity, Intestinal noise, Irregular stool, Tooth enamel defects, Rash in upper arms, Abdominal swelling, depression, fatigue, irritability, lactose intolerance, 
      loss of memory, dandruff, uncontrollable bladder, suicidal thoughts, unable to sleep, Canker sores/ Mouth ulcers, high blood pressure, and probably others that I did not realize. I was at the end of my rope, thanks to Google and the people that are able to talk about this I was able to get my life back. I am passionate about this because I know how bad its can get. 
    • Well, I have never cruised on Carnival, but I am sure they can accommodate you.  I assume that you have already alerted them that you require gluten free meals.  If not, please contact Carnival immediately. Here are my own tips.  Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!)  Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it).   When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants.   Let them know you have celiac disease and must be gluten free.  They may try to tell you that each dish is clearly marked gluten free, but really?  Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not!  The staff usually will  go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies.  We have to wait up to 20 minutes or so but it is worth it.  Starving?  Get a baked potato wrapped in foil until your gluten-free meal arrives.  Now, do not do this every single time.  Those folks have to go down several levels to fetch food and you don't want to be a pain.  But if the main dining area is closed, they need to make an effort to keep you safe.  On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies).  My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room.  We can always grab whole fruit (I wash it first) to snack on.  I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often).  Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner.   Be grateful and not picky.   We eat all meals in the dining room (or at least as much as possible).  Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast!  What a treat!  At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time!  They even let me tour the kitchen and showed me the allergy section.   The only time I did not feel safe was at the buffet.  We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it.  Got the manager etc.  So, be careful.  Other cruises made us frozen Udi"s which was just fine with us.  They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun!   Tipping?  We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time.  For us, it was well worth the service and safety of our food.  It does not hurt to slip some of the tip ahead of time (like after your first meal!)   Oh, I checked your ship.  You must eat in the diningroom if you have special dietary needs.
    • French Celiac / Coeliac Gluten Free Restaurant Card <strong>What is ... What to know about celiac disease, gluten sensitivity, and gluten-free diets. View the full article
    • <strong>Celiac Disease & Gluten-free Diet Information at Celiac.com. Gluten Free Diabetes ::The 3 Step Trick that Reverses Diabetes Permanently in ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,432
    • Most Online
      1,763

    Newest Member
    rbeckler60
    Joined