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. - knitty kitty replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    2. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      1

      Second chance

    3. - cristiana replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

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

    • Total Members
      133,563
    • Most Online (within 30 mins)
      7,748

    joniverse
    Newest Member
    joniverse
    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
      I found some articles that illustrate the immune reaction to casein and gluten. Bovine milk caseins and transglutaminase-treated cereal prolamins are differentially recognized by IgA of celiac disease patients according to their age https://pubmed.ncbi.nlm.nih.gov/19290628/   Gliadin and Casein Metabolism: Synthesis of Gliadomorphin and Casomorphin and Their Biological Consequences https://www.researchgate.net/publication/397908713_Gliadin_and_Casein_Metabolism_Synthesis_of_Gliadomorphin_and_Casomorphin_and_Their_Biological_Consequences   Effects of milk containing only A2 beta casein versus milk containing both A1 and A2 beta casein proteins on gastrointestinal physiology, symptoms of discomfort, and cognitive behavior of people with self-reported intolerance to traditional cows’ milk https://pmc.ncbi.nlm.nih.gov/articles/PMC4818854/#:~:text=Results,lactose tolerant and intolerant subjects.   Casomorphins and Gliadorphins Have Diverse Systemic Effects Spanning Gut, Brain and Internal Organs https://pmc.ncbi.nlm.nih.gov/articles/PMC8345738/   Brain Opioid Activity and Oxidative Injury: Different Molecular Scenarios Connecting Celiac Disease and Autistic Spectrum Disorder https://pmc.ncbi.nlm.nih.gov/articles/PMC7407635/  
    • Mari
      Ijmartes71 I  son't think you are crazy by any psycoligical s=defination but you are obsessive. you may have considerable brain fog  , a problem that affects celiacs and many other people. . With this obsession you have abd being braun dogged you arw not abke to take any advice people are giving you to help you. To take advice you need to reduce your anxieties abd think more clearly. .Stop taking your herbs for at least one week because some of them will have side ellectsif you take them too long. You can add them back if you don't notice any good changes. Be more careful about being strictly gluten free.  
    • cristiana
      Just to say that I too was hesitant to come off dairy products completely @dsfraley.  Milk, yoghurt and soft cheeses definitely caused bloating.  This bloating gave me rib and pelvic pain, and I remember  the pain was so horrible at times it was almost a sick feeling., kind of like the sort of aches you get with flu.   Milk, yoghurt and soft cheeses also gave me diarrhea, but I noted I could still eat small amounts of hard cheese like cheddar without any issues. Re: milk, my gastroenterologist told me at that time that I could just by lactofree products, and should be fine, but when my gut was still very damaged they went right through me regardless. Thankfully I am able to tolerate milk very well again, although I have noted that too much of it can have a slightly laxative effect. The other thing that made me feel off were heavy iron supplements, which contributed to bloating and diarrhea.  In the end a GP told me to take ferrous gluconate, which is a much gentler supplement, with water an hour before breakfast in the morning.  That was helpful.  If your son is supplementing  (which needs to be under medical supervision as too much iron can cause issues) Floravital fruit syrup is another alternative, but make sure you don't buy Floradix as it contains gluten. Lastly, all oats, soya products and certain pulses also made my stomach sore.  Apart from the oats (which need to be certified 'pure' aka gluten free ones) I was able to eat these things again some months after adopting a gluten-free diet. I would say keeping a food diary might be worth a try, noting any negative symptoms following eating.  Patterns start to emerge which might otherwise be difficult to identify.
    • trents
    • Wheatwacked
      Anyway, I have no problem with grass fed milk other than the price.  Maybe I should move to Ireland or New Zealand.  They're the only countries that don't feed grains to their cows to increase milkfat and milk volume. A side note: I just came back trom the vascular surgeon about the scan of my carotid arteries done last week.  A year ago I had over 90% stenosis in the right artery and 80% in the left.  Tcar procedure done in the right with a stent.  The results today were right side downgraded to Moderate stenosis and the surgeon did not expect to see as much improvement on the left. (untouched). I must be doing something right.  Recheck in six months.   Mucosal reactivity to cow's milk protein in coeliac disease This paper proves that cassein is the protein in cow's milk is the trigger but the study did not differentiate as grass fed milk.  I haven't found any studies specific to grassmilk. The study does not differentiate alpha or beta cassein.  Google says: some clinicians speculate that grain-based proteins could potentially pass into the milk, though scientific studies typically find no detectable gluten or gliadin fragments in bovine milk regardless of the cow's diet. So given alpha cassein as the trigger, grass fed A2 cassein; thought to be easier to digest and less likely to trigger the specific inflammatory pathways associated with standard commercial dairy; plus the omega 6:3 ratio of grain fed milk is 5.8:1 vs grass fed ratio of 1:1, grass fed milk is less inflammatory.  
×
×
  • 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.