Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Never Let Anyone Tell You This Isn't Serious


bonnie blue

Recommended Posts

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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 )))


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.