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

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

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

1desperateladysaved Proficient

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

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

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

Colleen

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

Wishing you all the support you need

Mw x

IrishHeart Veteran

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

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

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

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

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

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

GottaSki Mentor

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

Me too!! Me too!!! 

Celiac Mindwarp Community Regular

And me x

GF Lover Rising Star

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

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

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

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

 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

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

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

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

GF Lover Rising Star

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

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.

  • 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. - Rejoicephd commented on Scott Adams's article in Origins of Celiac Disease
      8

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

    2. - knitty kitty replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

    3. - Yaya replied to Yaya's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Great Value Veggies cannot be trusted.

    4. - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

    5. - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

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

    • Total Members
      133,445
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      I've heard RO water is bad, too.   Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too.  I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.  
    • Yaya
      Scott.  Thank you for your reply. I'm still having symptoms, but significantly better.  I will go back to batch cooking and freezing vegetables.  I have had success with Pict Sweet frozen, single item (not mixed) vegetables.  My Kroger carries very little Pict Sweet variety. Regards, Yaya
    • Known1
      I am hesitant to post this as I have seen many people here recommending RO water.  With that said, I want to share my experience and how RO water now impacts me.  Three or four years ago a local store installed a RO water refill station.  I had been buying gallons of distilled and spring water prior to that.  I switched over to using the RO water refill station saving money by brining in my own clean empty gallon jugs.  Every 6-months I would replace the jugs by buying new gallons of distilled water.  This RO water is the only water I would drink while at home.  Two huge glasses every morning before work and two more after work.  I would also use the RO water to make coffee and hot coco. This past December, prior to my celiac diagnosis, my gut was making more noise than anything I had ever experienced.  Seriously, it was crazy, almost like fire works going off in my stomach.  I happened to pick up some distilled water for my 6-month jug rotation.  Literally, as soon as I started drinking the distilled water my stomach settled a great deal.  I could honestly feel the difference after the first glass of water.  I thought that maybe the RO water from the store's refill station was contaminated with some sort of cleaning agent.  I swore to myself I would never drink from that RO refill station again.  Instead I went back to buying distilled along with gallon jugs of spring water.  No issues with either of those as far as an upset stomach is concerned.  Cost, well that's a different story all together. After being diagnosed marsh 3c, I went shopping at Aldi's for the first time in my life.  I noticed they also sell water by the gallon.  Over the course of the last few weeks, I have purchased a total of 6-gallons of their water.  (Thankfully they were out on two of my visits.)  After having my stomach starting to make noises similar to mid-December again, it dawned on me, maybe its the Aldi water?  Initially I had contributed my bubble gut to some sort of gluten exposure or cross contamination.  Even though everything I have put into my stomach is naturally gluten-free or has been labeled gluten-free / certified gluten-free.  I had assumed that the Aldi water was spring water.  Come to find out, that was a bad assumption.  Looking close at the label it says purified by RO or distillation (or something like that). Again, I switched to different water.  Just like last December, the non-RO water instantly calmed my stomach and even felt better going down the hatch.  This was earlier today by the way.  Prior to creating this post, I did a few searches via Uncle Google.  I bumped into a thread on Reddit (where I am not a member) that has multiple people complaining of GI issues related to RO water.  So my initial thoughts on a cleaning agent in the refill station RO water were likely not correct.  Unfortunately, it seems the RO water itself causing me problems.  I am not sure if we are allowed to post links to other sites and hopefully I will not get into trouble for doing so.  I did try printing the Reddit thread to a PDF file.  Unfortunately, the file is 2MB in size, which is well over the 500KB file attachment limit here on this amazing forum.  Again, hopefully this is ok.  🤞  Here is the Reddit thread. This may not be a popular opinion here, but personally, I will not willingly drink another glass of RO water for the remainder of my life.  Who knows, maybe drinking RO water for the past several years is part of what activated my celiac?  No proof, but just a thought.  Come to find out RO water is well known to leech minerals from your body.  With people like us often lacking minerals to begin with, RO water does not seem like a wise choice.  As the Reddit thread mentions, there are RO water filtration systems that will inject minerals back into the water.  However, those systems are likely not being used at the grocery store refill stations nor by the bottling companies producing RO water for sale at your local store. Please do not shoot the messenger as I am just sharing my personal experience and letting others know that most RO water will leech minerals from your body. God bless and stay well, Known1
    • Known1
      My neighbor's mom was diagnosed with celiac disease 16 years ago.  She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals.  This evening she brought over 2 slices of Papa Murphy's gluten-free pizza.  It looks to be topped with chicken and spinach.  I asked, "aren't you concerned with cross contamination"?  She said no and apparently eats it on a somewhat regular basis. I found an old article here along with another thread pertaining to Papa Murphy's gluten-free pizza.  The article is quite old, so I do not think it holds much weight nowadays.  The thread I found was also a bit dated, but certainly more recent and relevant.  The information in the thread I found was a bit inconclusive.  Some said they trust Papa Murphy's gluten-free pizza and others were a big no way.  One person even took time to train their local franchise on how to ensure the pizza remains gluten-free without cross contamination. Anyway, being recently diagnosed as marsh 3c, I am currently working on week 3 or 4 in my new gluten-free journey.  I do not want to be rude and toss the pizza out, but I also do not want to have a reaction.  Since she has celiac and obviously ate much or at least some of the pizza, I am leaning towards eating the two slices for lunch tomorrow.  As this thread's title states, what would you do?  Would you eat it or toss it out?  I suppose I could also just give it back to my neighbor to polish off. I look forward to reading your thoughts. Thanks, Known1
    • Scott Adams
      That must have been really upsetting to discover, especially after relying on a product you believed was safe. Labeling can change at any time due to supplier shifts or shared equipment, so it’s always important to double-check packaging—even on products we’ve trusted for years. A “may contain wheat” statement usually indicates potential cross-contact risk rather than an added ingredient, but for people with celiac disease that risk can still be significant. If you’ve been having symptoms, it may take days to weeks to fully settle, depending on the level and duration of exposure. In the meantime, switching to fresh produce or brands that clearly state gluten-free status is a reasonable step. It may also help to contact the manufacturer directly to ask when the labeling changed and what their current cross-contact controls are.
×
×
  • 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.