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

Last Round Of Chemo Done!

bonnie blue

By bonnie blue
in Coping with Celiac Disease

Recommended Posts

bonnie blue Explorer
bonnie blue
Posted

Good morning friends,

Well I am all done with my three rounds of cocktails, can I get a Woo Hoo!!! I am scheduled for the removal of my stomach on January 27th, so basically I have 23 days to eat all I want to eat, of course no gluten, lol. The doctors are so pleased with my progress and actually think I will have an easier time with the surgery and the new diet because I already know what my body can and cannot handle, what will cause the big D, make me sick, etc..... So thank you Celiac Disease!!!!!

Now dont get me wrong I know that this will not be easy, but I do feel pretty good going into this, I can look at this two ways, I am getting my stomach removed, ummmm ya that is not going to be fun, or I can look at it as I am getting rid of the organ that has the cancer so that I can move on and live my life, there will be major dietary changes but heck we have all been through that!!

It's kinda funny people say to me well at least you wont have Celiac Disease anymore, ummmm ya I will, I just laugh it off. People dont understand I dont mind having Celiac, its the Cancer that pisses me off, lol.

There are certain things I miss, you bet, but on the other hand I never feel like I am missing out on good food, I eat great food everyday!!!

So I just want to say to everyone we have Celiac Disease, Celiac Disease does not have us!!!

Oh and to let you know I got the cutest little blond wig and I am rockin that new hair, you know they do say blondes have more fun :D

Have a wonderful day everyone, thanks again for all the support and hugs, take care B)

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Woo Hoo!

Jestgar Rising Star
Jestgar
Posted

woot.gif

You are amazing Miss Bonnie!

Darn210 Enthusiast
Darn210
Posted

WooHoo!!!

You go, girl!!! Your positive attitude is inspiring!!!

My brother heard blondes have more fun and gave it a try . . . turned his hair orange . . . not quite the same.

AVR1962 Collaborator
AVR1962
Posted

YYYYYAAAAAYYYYY!!!!!!!!!! What a good spirit too! Good for you!!

lynnelise Apprentice
lynnelise
Posted

So glad to hear you are doing well! :)

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Yay for being done with chemo!!!

Your attitude is inspiring.'

Rock that blond wig! LOL :D

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

Celiac.com Sponsor (A8-M):


catsmeow Contributor
catsmeow
Posted

You have such a great attitude. I hope everything works out really well for you.

I hope you don't mind me asking for details. But I am curious about your surgery. Will they be removing most of your stomach and leaving a small amount for food intake, kind of like a Vertical sleeve Gatrectomy or will you have to have it all removed and be basically left with a bypass surgery? If they are leaving some of your stomach, do you know the percentage of stomach they are removing?

I cannot believe someone thought you wouldn't have Celiac's anymore...LOL....DUH!!!!

Here's one for you:

I've read so many times on here about people saying that other people would say to them, that they would kill themeselves if they couldn't eat bread/pasta. It has really offended many of the gluten challenged on this site. Well, glory be, it finally happened to me the other day. The cashier said it. I was delighted, because it took nearly 2 years for someone to say it to me, she said "I'm Italian and I would kill myself if I couldn't eat pasta" I had a good laugh and then told her about Tinkyada pasta, ending with "see you wouldn't have to kill yourself afterall" I said it sarcastically, but in a joking way that caused all around, even the cashier to burst out laughing. Sometimes we just have to find humor in things that really are not funny. I love your attitude and just thought that you would enjoy that liitle tale.

I'll be praying for you, and will add your name to the prayer basket at church on Sunday. I'll be praying that your surgery goes smoothly and safely and that the surgeon gets every bit of the cancer out of there and that you have no more cancer ever ever ever ever again...(((((hugs)))).

ravenwoodglass Mentor
ravenwoodglass
Posted

Glad to hear the chemo is done. With your strength and good attitude, well I think you can beat anything.

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

Skylark Collaborator
Skylark
Posted

WooHoo!!!! So glad to hear you're staying upbeat through all this. I hope the surgery goes well. :)

IrishHeart Veteran
IrishHeart
Posted

Here's your Whoohoo!!! and I'll throw in a "YOU GO, Girl"! :)

You are not only inspiring, but your courage just humbles me.

(I thought I was a warrior princess) ---well, honey, you are the QUEEN! ;)

Best wishes and a hug,

IH

beebs Enthusiast
beebs
Posted

You are really positive! That is great. I'm so glad for you Chemo is over and so glad that the next chapter of your *healthy* life is starting. Yayy!!

mushroom Proficient
mushroom
Posted

Here's another WOO HOO!!! for you - the more the merrier. :D Keep that sunny outlook and the world will smile upon you.and keep you safe :)

mamaw Community Regular
mamaw
Posted

Great to hear chemo is complete... Your spirit is amazing.. After you recover you need to take your spirit &journey on the road to helping others cope..you could be a lifesaver for so many with your positive attitude.. WAY TO GO>>>>>>>>

blessings mamaw

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. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

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

      @catnapt, I apologize. Obviously I've confused you with someone else. I have vision problems due to undiagnosed Celiac complications. Being legally blind, y'all look the same from here. You still have not said which new medication you started taking. Parathyroid disorders can affect antibody production. Bone Loss Correlated with Parathyroid...
    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

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

      during the gluten challenge I did not consume any wheat germ the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least. no anemia however the endo who ordered...
    3. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

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

      @catnapt, I'm sorry you're having such a rough time. How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them. Do you pressure cook your beans? Were you pressure cooking your wheat germ? What drugs are you taking? Some immunosuppressive drugs affect IgA production. Do...
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

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

      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 🤔
    5. Wheatwacked
      - 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.

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

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Helen1984
    Newest Member
    Helen1984
    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

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

      By knitty kitty · Posted

      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

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

      By Wheatwacked · Posted

      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.  
×
×
  • 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.