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

By bonnie blue
in Coping with Celiac Disease

Recommended Posts

bonnie blue Explorer
bonnie blue
Posted

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
ravenwoodglass
Posted

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

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

navigator Apprentice
navigator
Posted

Really sorry to hear your news. Thinking of you.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

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
kareng
Posted

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

pricklypear1971 Community Regular
pricklypear1971
Posted

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

Skylark Collaborator
Skylark
Posted

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
domesticactivist
Posted

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
lynnelise
Posted

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
srall
Posted

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

mushroom Proficient
mushroom
Posted

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
AVR1962
Posted

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

bartfull Rising Star
bartfull
Posted

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
sandsurfgirl
Posted

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
bonnie blue
Posted
  • Author

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
Jestgar
Posted

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

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

pricklypear1971 Community Regular
pricklypear1971
Posted

That's great news!

Skylark Collaborator
Skylark
Posted

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
Bubba's Mom
Posted

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
lynnelise
Posted

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
Gemini
Posted

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
sahm-i-am
Posted

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

sandsurfgirl Collaborator
sandsurfgirl
Posted

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
GottaSki
Posted

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
Lisa
Posted

Fight like a girl, bonnie blue! B)

Archived

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

Go to topic listing

  • 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. Bogger
      - Bogger replied to Bogger's topic in Related Issues & Disorders
      2

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

      Thanks for your reply I’m a nearly 69yr old female. My only medications are Fosamax and Lamotrigine for seizures. Thank you for that drugs.com link! There are soooo many common side effects for Reclast and almost nothing for Fosamax. Since it’s working well and I haven’t had any side effects from Fosamax (stomach bleeding, pain or upset) my d...
    2. trents
      - trents replied to Charlie1946's topic in Related Issues & Disorders
      32

      Severe severe mouth pain

      But for someone with Barrett's like @Charlie1946, long term PPI therapy might be necessary.
    3. Caligirl57
      - Caligirl57 replied to Charlie1946's topic in Related Issues & Disorders
      32

      Severe severe mouth pain

      Thank you!!
    4. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      22

      Shingles - Could It Be Related to Gluten/ Celiac

      Sorry I didn’t get a notification you posted. Thanks for this information! Im Still battling it and the itching that has now developed in my scalp and on my face is unbearable. My hair has broke off. I now have hazing on my cornea and I’m at like week 8 now I think. I came Down with Covid right before Christmas and now I have strep throat!! I think my imm...
    5. knitty kitty
      - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      32

      Severe severe mouth pain

      Aaaackkk!!! Stop with the Omeprazole! It's not good, especially if taken for a long period of time!!! Gerd and Acid Reflux are actually caused by too little digestive enzymes resulting from nutritional deficiencies in Thiamine B1 and Niacin B3 that are needed to make digestive enzymes. Omeprazole is a proton pump inhibitor that has been shown...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,083
    • Most Online (within 30 mins)
      7,748
    AASpahic
    Newest Member
    AASpahic
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Bogger
      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

      By Bogger · Posted

      Thanks for your reply I’m a nearly 69yr old female. My only medications are Fosamax and Lamotrigine for seizures. Thank you for that drugs.com link! There are soooo many common side effects for Reclast and almost nothing for Fosamax. Since it’s working well and I haven’t had any side effects from Fosamax (stomach bleeding, pain or upset) my doctor recommends it first over Reclast. Reclast is introduced into a vein thus bypassing the stomach which avoids all those stomach issues. But, once it’s in me, it’s there for a year or so. Any complications can’t be undone. With Reclast, I’m concerned about not being able to treat dental issues, several weeks of bone pain and the chance, although rare, of kidney damage. Plus all those other dozens of common side effects. It’s a very effective drug but looks pretty complicated to deal with. Hopefully I’m not just being a big chicken. In 2018 I fell and broke my ankle in two places. It took three screws to put it back together which is normal for that surgery. There was no mention of any difficulty or signs of bone loss. Thanks to my dog, I fell about a month ago onto a concrete floor with thin carpet. I landed on my left hip, then my spine, one vertebrae at a time, then clunked my head on the door frame. Twisted my wrist too. It was all in slow motion waiting to feel a crack that didn’t happen. Went to the ER tho. Amazingly, I didn’t even see any bruises. Thanks again for that link. I need to read through it some more. My doctor’s appt is next week when I’ll make the big decision.   
    • trents
      Severe severe mouth pain

      By trents · Posted

      But for someone with Barrett's like @Charlie1946, long term PPI therapy might be necessary. 
    • Caligirl57
      Severe severe mouth pain

      By Caligirl57 · Posted

      Thank you!!
    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      Sorry I didn’t get a notification you posted. Thanks for this information! Im Still battling it and the itching that has now developed in my scalp and on my face is unbearable. My hair has broke off. I now have hazing on my cornea and I’m at like week 8 now I think. I came Down with Covid right before Christmas and now I have strep throat!! I think my immune system has quit!! How much longer-l-lysine is recommended?  Thanks I have been wondering if I need to increase my zinc and or vitamin d And / or add anything else 
    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      Aaaackkk!!!  Stop with the Omeprazole!  It's not good, especially if taken for a long period of time!!!   Gerd and Acid Reflux are actually caused by too little digestive enzymes resulting from nutritional deficiencies in Thiamine B1 and Niacin B3 that are needed to make digestive enzymes.   Omeprazole is a proton pump inhibitor that has been shown to cause continuing villi damage to the small intestines!        Factors associated with villus atrophy in    symptomatic coeliac disease patients on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/28220520/ Proton Pump inhibitors reduce digestive enzymes which results in poorly digested food.  If the food is not broken down by the digestive enzymes, then the nutrients cannot be released from the food and cannot be absorbed by the villi.  Damaged villi cannot absorb nutrients from food.  PPIs block Thiamine B1 transporters, so that thiamine cannot be absorbed.  PPIs reduce the production of the intrinsic factor required for Cobalamine B12 absorption.  The absorption of other vitamins and minerals are affected as well.    The Effects of Proton Pump Inhibitors in Acid Hypersecretion-Induced Vitamin B12 Deficiency: A Systematic Review (2022) https://pubmed.ncbi.nlm.nih.gov/36545170/ Proton Pump Inhibitors like Omeprazole should be used only on a short term basis, like two weeks.  Continued use can cause nutritional deficiencies because PPIs prevent the absorption of vitamins and minerals.      Profound Hypomagnesemia Due to Proton Pump Inhibitor Use-Associated Wernicke’s Encephalopathy: A Case Report on Excitotoxicity https://pmc.ncbi.nlm.nih.gov/articles/PMC12618944/    Proton pump inhibitors and risk of vitamin and mineral deficiency: evidence and clinical implications https://pmc.ncbi.nlm.nih.gov/articles/PMC4110863/ Vitamin and mineral deficiencies contribute to health problems like Non Alcoholic Fatty Liver Disease and Chronic Renal Failure and Osteoporosis.    Association between dietary intakes of B vitamins and nonalcoholic fatty liver disease in postmenopausal women: a cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC10621796/    The association between proton pump inhibitors and hyperparathyroidism: a potential mechanism for increased fracture-results of a large observational cohort study https://pubmed.ncbi.nlm.nih.gov/37530847/ Regular Proton-Pump Inhibitor Intake is Associated with Deterioration of Peripheral Bone Mineral Density, Microarchitecture, and Strength in Older Patients as Assessed by High-Resolution Peripheral Quantitative Computed Tomography (HR-pQCT) https://pmc.ncbi.nlm.nih.gov/articles/PMC12546302/ Vitamins and minerals are essential to our health and can prevent disease. Long term use of PPIs can cause kidney disease and liver disease!    Association between Proton Pump Inhibitor Use and Risk of Incident Chronic Kidney Disease: Systematic Review and Meta-Analysis https://pubmed.ncbi.nlm.nih.gov/39061988/    Proton pump inhibitors use and the risk of fatty liver disease: A nationwide cohort study https://pubmed.ncbi.nlm.nih.gov/32886822/  Thiamine deficiency unrelated to alcohol consumption presented with urinary retention and Wernicke's encephalopathy: A case report https://pmc.ncbi.nlm.nih.gov/articles/PMC10415583/ Essential nutrients are needed to repair and heal the body!    High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition https://pubmed.ncbi.nlm.nih.gov/33608323/ Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ There are liquid forms of B complex vitamins that are available over-the-counter and by prescription.   I pray for ears to hear.
×
×
  • 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.