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

  • 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. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to drjay's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Unsteady in my new diagnosis

      @drjay in addition to what @trents wrote, I wanted to comment on your statement, "Positive for DQ2 and homozygous for DQB1*02 but negative for DQ8" You don't need DQ2 >and< DQ8 in order to be susceptible to getting celiac. Either one is good enough. DQB1*02 is a specific genetic allele that encodes part of the DQ2 protein. "Homozygous" means...
    2. trents
      - trents replied to drjay's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Unsteady in my new diagnosis

      @drjay, your mixed test results experience is exceedingly common for someone having been consuming reduced amounts of gluten. A Marsh scale score of 3 indicates "significant villous atrophy" according to a quick google search I did and the biopsy is the gold standard diagnostic test anyway, not the blood antibody testing. It doesn't look like a "total IGA...
    3. drjay
      - drjay posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Unsteady in my new diagnosis

      About 2 years ago I got a referral to a GI because I was experiencing gut pain, bloating, and some other not so fun symptoms. He scheduled a colonoscopy and that came back fine with the exception of very small healing ulcers in my TI. I have a family history of stomach ulcers so I was prescribed a round of antibiotics and then placed on a PPI w/o an endoscopy...
    4. Scott Adams
      0

      Nearly One-Third of IBS Patients Report Gluten Sensitivity, New Study Finds (+Video)

    5. knitty kitty
      - knitty kitty replied to smiths's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      29

      Struggling with gluten challenge and not sure it’s worth it - looking for advice / experiences / encouragement

      I found these articles interesting. Among people already diagnosed with Celiac Disease, the HLA DQ B1*02 allele is present in about 95%...... Carrier frequency of HLA-DQB1*02 allele in patients affected with celiac disease: A systematic review assessing the potential rationale of a targeted allelic genotyping as a first-line screening https...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,889
    • Most Online (within 30 mins)
      10,442
    drjay
    Newest Member
    drjay
    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)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Unsteady in my new diagnosis

      By Aretaeus Cappadocia · Posted

      @drjay in addition to what @trents wrote, I wanted to comment on your statement, "Positive for DQ2 and homozygous for DQB1*02 but negative for DQ8" You don't need DQ2 >and< DQ8 in order to be susceptible to getting celiac. Either one is good enough. DQB1*02 is a specific genetic allele that encodes part of the DQ2 protein. "Homozygous" means two copies of the same allele (the opposite is "heterozygous", where the two copies are different alleles). If you are homozygous for DQB1*02, you couldn't have DQ8. In other words, your genetic test tells you that you definitely have the potential to get celiac.   
    • trents
      Unsteady in my new diagnosis

      By trents · Posted

      @drjay, your mixed test results experience is exceedingly common for someone having been consuming reduced amounts of gluten. A Marsh scale score of 3 indicates "significant villous atrophy" according to a quick google search I did and the biopsy is the gold standard diagnostic test anyway, not the blood antibody testing. It doesn't look like a "total IGA" blood test was ordered and without that we cannot tell if you are IGA deficient. If IGA deficient, other celiac IGA antibody scores, such as the tTG-IGA, cannot be trusted. They will likely be artificially low. And given the fact that there is significant improvement in your symptoms once you went on a strict gluten free diet, there is no doubt in my mind that your doctor's diagnosis of celiac disease is the correct one. By the way, welcome to celiac.com.!
    • drjay
      Unsteady in my new diagnosis

      By drjay · Posted

      About 2 years ago I got a referral to a GI because I was experiencing gut pain, bloating, and some other not so fun symptoms. He scheduled a colonoscopy and that came back fine with the exception of very small healing ulcers in my TI. I have a family history of stomach ulcers so I was prescribed a round of antibiotics and then placed on a PPI w/o an endoscopy to confirm. I think I may have convinced myself it was helping for about a year but I likely just acclimated to how I was feeling. Fast forward to January and my symptoms had gotten to be persistently unbearable and nothing was helping except some minor pressure relief from gasx. I get another appt with the GI and get an endoscopy done. There’s no ulcer so I stop the PPI and we do a SIBO test which comes back negative. The Dr orders a Labcorp celiac test immediately after he gets the biopsy results w/o the gluten challenge thing. I already don’t consume much if any because I suspected I may be sensitive to  gluten.  They grade the biopsy Marsh class 3 but my lab tests are weird and listed below IgA 11 (weak positive is 19) IgG 5 (weak positive is 19) tTG IgA 3 (weak positive 4) Positive for DQ2 and homozygous for DQB1*02 but negative for DQ8 My GI did diagnose as Celiac but the blood test makes me unsure. Even though I’ve been unsure, I immediately went on a strict gluten free diet. Yesterday makes 12 days and it was the first day with a normal bowel movement in last several weeks. Anyone have similar experience? 
    • knitty kitty
      Struggling with gluten challenge and not sure it’s worth it - looking for advice / experiences / encouragement

      By knitty kitty · Posted

      I found these articles interesting. Among people already diagnosed with Celiac Disease, the HLA DQ B1*02 allele is present in about 95%...... Carrier frequency of HLA-DQB1*02 allele in patients affected with celiac disease: A systematic review assessing the potential rationale of a targeted allelic genotyping as a first-line screening https://pubmed.ncbi.nlm.nih.gov/32256023/   Total IgA levels can be affected by the same HLA DQ B1*02 allele..... Total serum IgA levels and HLA-DQB1*02:01 allelic status https://pubmed.ncbi.nlm.nih.gov/37725324/
    • Scott Adams
      Struggling with gluten challenge and not sure it’s worth it - looking for advice / experiences / encouragement

      By Scott Adams · Posted

      This new company claims to offer the most comprehensive genetic tests on the market for celiac disease, and we'll be doing a product review article (sponsored) on them soon.
×
×
  • 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.