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

Looking For Support...

GF Lover

Recommended Posts

GF Lover Rising Star
GF Lover
Posted

I have a few updates on my cancer.  I'm having 2 wide excision done Friday on 2 dysplatic Nevis.  Then next Tuesday I have scans done, chest, gut and pelvis.  My chest scan in December showed a 4mm Spot in my lung.  This is one that scares me.  I've also been having neurological issues that seem to be getting worse.  My brain is selecting some kind of word for me in a sentence, that doesn't make sense.  Forgetting info five seconds after I've been told.  My beautiful handwriting is suffering.  I been mispelling simple words.  and I am having balance issues. I gonna ask for a head ct scan too.  My depression has been very heavy. My anxiety is as high as I've ever experienced and I am totally fatigued and couch bound.   The waiting for these procedures on Friday and then the scans on Tuesday is debilitating me and my appetite is especially very low.

 

Please keep me in your thought if you can. I truly appreciate it

 

Thank you

 

Colleen

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

Celiac.com Sponsor (A8-M):


bartfull Rising Star
bartfull
Posted

Lot's of heartfelt prayers coming your way. (((((HUGS)))))

1desperateladysaved Proficient
1desperateladysaved
Posted

Hi Colleen,

 

Oh, I hope you will feel better soon.  I have been wondering where you are.  The Lord hasn't left you and can carry.  When you feel the couch under you, you can feel you are being carried.  Hang on, or just be held on to.

 

***  Get well

 

Diana

mushroom Proficient
mushroom
Posted

Colleen, you are being carried lovingly in our thoughts wherever you go.  We are all pulling for you.  I know the waiting is excruciating ~~ try some celiac disease's with beautiful imagery and music to transport you away from troubling thoughts.  We are here for you whenever you need us.

kareng Grand Master
kareng
Posted

Colleen, you are being carried lovingly in our thoughts wherever you go.  We are all pulling for you.  I know the waiting is excruciating ~~ try some celiac disease's with beautiful imagery and music to transport you away from troubling thoughts.  We are here for you whenever you need us.

 

 

You could try some compact discs or an Ipod, too!  (love the helpful nature of this site!)

 

Good luck with the procedures. Sending positive thoughts! 

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Colleen

Sending positive thoughts, hugs and prayers from across the pond.

Wishing you all the support you need

Mw x

IrishHeart Veteran
IrishHeart
Posted

Oh sweet girl, I have just arrived home from being on the road for 3 days and I knew your tests were fast approaching and you've been heavily on my mind. 

 

You have every right to be concerned, but being anxious will just drain you. Think only positive thoughts, girlfriend!!. 

 

You know you always have my loving thoughts and positive energy sent your way every morning. (I always send up thoughts for

all the celiac warriors I know and love  ;))

 

You know you can call me anytime, if you just want to vent.  

xx 

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

Celiac.com Sponsor (A8-M):


GF Lover Rising Star
GF Lover
Posted
  • Author

Thanks to all of you.

 

 Have been listening to my relaxation music and chakra meditations.  It's soothing and the only thing keeping me sane.  Positive thoughts are difficult.  I'm having nightmares and such.  

 

I really appreciate you thoughts and prayers.  

 

Colleen 

Gemini Experienced
Gemini
Posted

My love and healing thoughts are being sent your way, Colleen.  You will be in my thoughts tomorrow so please hang in there.....I'm rootin' for you!  Please keep us updated when you are able.  Best of luck tomorrow!

GottaSki Mentor
GottaSki
Posted

Oh Colleen - was wondering where you have been - I've had those same neuro symptoms and is beyond difficult to be possitive while they are happening - so for now we will carry your hope for you until you are ready to pick it back up.

I framed your beautiful Christmas card and will send loving healing thoughts each time I pass it.

:)

GFinDC Veteran
GFinDC
Posted

I hope everything goes well for you Colleen.  Our church group said a prayer in the name of Jesus for you last night.  Hang in there and remember we are thinking of you.  :)

nvsmom Community Regular
nvsmom
Posted

(((HUGS))) Best wishes to to.  I wish you only the very best.

GottaSki Mentor
GottaSki
Posted

Hi Colleen-

 

Just in case you can read these, but not post right now -- I am still thinking powerful healing thoughts for you and will not stop.

IrishHeart Veteran
IrishHeart
Posted

Me too!! Me too!!! 

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

And me x

GF Lover Rising Star
GF Lover
Posted
  • Author

I'm beginning to feel like a like a scare crow.  New incisions are 3" diaganol one on back and 3" vertical one on right thigh.  These go wonderfully with the 2 monsters on the left leg.  The back one is kinda uncomfortable but they are healing well and I get to shower today, hooray.   Get this, I actually watched the doc do the one on my thigh.  They propped the bed up for me.  I couldn't watch all the numbing stuff going on, hurt.  After that it was so surreal the cutting, pulling, stitching.  Yes, I'm not in my right mind, but was really cool. Path reports due Friday 

 

See what you guys do for me?  I'm much calmer now and ready for all the scans tomorrow, whatever the outcome.  I get the results same day from the doc so ill let you know as soon as I can, or let IH know.

 

Love you guys

 

Colleen 

GottaSki Mentor
GottaSki
Posted

Thanks for the update -- glad you get to shower -- always feels fantastic after withheld for a few days.

 

Prayers for good news from the scans tomorrow continue :)

IrishHeart Veteran
IrishHeart
Posted

C

Watching your own surgical procedure is about as cool as it gets. (I know, I'm a dork, but I like that stuff. Fascinating) And scars are sexy, IMHO. I've got 5  and I think, well, battle-worn maybe, but still kicking.

. 

You're doing a great job of getting all this done and remaining steady and cool....one more hurdle and then, they will leave you be for a bit.

Hang tough. Were here ----and we're sending love and moral support.

xx

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Glad to hear it all went well today, will have fingers crossed for those scans.

 

I saw quite a lot of my 2 c-sections, which was quite interesting. Strangely fascinating, though somewhat disconcerting.

 

Your fighting spirit is amazing (even if it doesn't always feel like that to you...)

 

Mw

IrishHeart Veteran
IrishHeart
Posted

 I checked on Colleen today and she replied. Our girl is one brave cookie. I asked her permission to share with the gang here (because I know you are all concerned) and she said:

 

"Go ahead and share. I want them to know what they mean to me." :) 

 

She wrote:


"All that support you guys have given is working.  Here's the breakdown.

The nodule in my lung has stayed stable, great news, but I do have a new one that's small and we will watch.  I have a scattering of spots on my liver but not diagnostic of anything at this point, also great news, and again, watch and wait.   My pancreas, gallbladder, kidneys all look great, thankfully.  I get the pathology on the two excisions this Friday, should have clear margins, no worries.   I am getting an MRI of my brain tomorrow because of some neurological and speech type issues.  But I think that may have come on because of the stress, crossing fingers.  Will be a week before I get those results.

So I think overall things look real good.  I'm stable and that's what counts.  I am really exhausted from everything and am gonna get lots of rest.

I'm really looking forward to getting things back to some kind of normal.  The support from you guys is getting me thru all this and I'd be lost without it.  I also look forward to getting back to contributing to the forum, if that's possible,lol.

I love you guys.
Colleen" 

GottaSki Mentor
GottaSki
Posted

Yay Colleen!!!

 

You rest up and jump in when you are ready -- stable sounds promising to me -- we will keep the the faith that the MRI and scan results are all good news.

 

Thanks for the update Irish :)

Loey Rising Star
Loey
Posted

I have a few updates on my cancer.  I'm having 2 wide excision done Friday on 2 dysplatic Nevis.  Then next Tuesday I have scans done, chest, gut and pelvis.  My chest scan in December showed a 4mm Spot in my lung.  This is one that scares me.  I've also been having neurological issues that seem to be getting worse.  My brain is selecting some kind of word for me in a sentence, that doesn't make sense.  Forgetting info five seconds after I've been told.  My beautiful handwriting is suffering.  I been mispelling simple words.  and I am having balance issues. I gonna ask for a head ct scan too.  My depression has been very heavy. My anxiety is as high as I've ever experienced and I am totally fatigued and couch bound.   The waiting for these procedures on Friday and then the scans on Tuesday is debilitating me and my appetite is especially very low.

 

Please keep me in your thought if you can. I truly appreciate it

 

Thank you

 

Colleen

 

I'm sorry I haven't responded on the site sooner. I've been offline and following on my Kindle (which doesn't seem to let me reply to email or on the forum). You have been in my thoughts and prayers since your first post and continue to be. You're on my list of heroes and heroines. Please know we're all pulling for you!

 

Sending positive energy, healing (((hugs))) and love,  :wub:  :wub:

Loey

nvsmom Community Regular
nvsmom
Posted

I hope you are feeling better and the tests stay looking so good.

GF Lover Rising Star
GF Lover
Posted
  • Author

Hey guys.

 

Pathology from both excisions is great.  Just scar tissue left and no nasty cancer cells!!  I'm a seriously happy camper.  MRI results should be in sometime this week but I'm pretty confident that all will be good, fingers and toes are all crossed.  I got pretty run down in the last few weeks so I'm getting better from that and I'm feeling good.

 

I hope you all know that your support is getting me thru this and I can't thank you enough, but I will try :)

 

Hoping your all feeling well,

 

Colleen 

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Good pathology = good news then!

 

This is really fantastic, it sounds like you can focus all your enrgy on healing for the next few weeks.

 

I am so pleased to hear things are going well, I have been thinking of you often

 

Hugs

Mw x

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,827
    • Most Online (within 30 mins)
      7,748
    Rebecca Hurst
    Newest Member
    Rebecca Hurst
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Colleen H
      Stomach burning and neuropathy

      By Colleen H · Posted

      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Nausea

      By Me,Sue · Posted

      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      @fatjacksonthecat I have been doing some digging about the topic of nicotine and celiac.  I came across many studies that showed that the nicotine patch helped many with long covid and chronic fatigue syndrome.  I have a son who was diagnosed with celiac and his symptoms are severe when he is glutened.  He shows a lot of neurological inflammation and suffered with fatigue, brain fog, depression, anxiety and insomnia. There have been studies revealing that nicotine smoke actually masking celiac symptoms.  I also read that microdosing with a nictoine patch prevents one from addiction.  We are currently trying this out and so far it has lifted the brain fog and helped with anxiety and mood.  One of the studies I have read showed that it's not so much the dose, but the length of time a person is on the patch that showed improvements.  Many showed significant improvement as early as week 3 and continued through week 12.  We are taking 3 day breaks in between to make sure we don't down regulate the nicotine receptors.   How have things been for you?  Are you still chewing nicotine gum?  Perhaps, try the patch?  And how long did it take to ease up on your symptoms when glutened?
×
×
  • 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.