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Never Let Anyone Tell You This Isn't Serious


bonnie blue

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bonnie blue Explorer

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.


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ravenwoodglass Mentor

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

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

navigator Apprentice

Really sorry to hear your news. Thinking of you.

Bubba's Mom Enthusiast

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)))

kareng Grand Master

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

pricklypear1971 Community Regular

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

Skylark Collaborator

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


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domesticactivist Collaborator

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.

lynnelise Apprentice

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!

srall Contributor

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

mushroom Proficient

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

AVR1962 Collaborator

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

bartfull Rising Star

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.

sandsurfgirl Collaborator

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.

bonnie blue Explorer

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.

Jestgar Rising Star

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

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

pricklypear1971 Community Regular

That's great news!

Skylark Collaborator

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.

Bubba's Mom Enthusiast

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!

lynnelise Apprentice

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!

Gemini Experienced

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

sahm-i-am Apprentice

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

sandsurfgirl Collaborator

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.

GottaSki Mentor

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!

Lisa Mentor

Fight like a girl, bonnie blue! B)

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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