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

So Much To Deal With Right Now...


Niteyx13

Recommended Posts

Niteyx13 Explorer

:( Well, it seems it is time for trails like crazy in our family. We have had soooo much junk hitting us already, and now we had the worst of the worst. My mother found out today that is has breast cancer. She is my only parent left, and I am too young to be losing parents as it is. I know this is not a cancer group, but does anyone know of any support groups like this for people dealing with a loved ones with cancer? I am going to have to be her main support, and I can't even keep it together myself. She is dealing with it better than I am. I hate seeming like I always complain, but things have been tough. Forgive me going off topic, and thanks for allowing me to vent here.

Deanna


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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

No, it's fine to vent. I guess, too, this serves as a good example to all of us of how fortunate we are with our situations......having celiac disease. It's easy to feel sorry for ourselves and at times we deserve to feel sorry for ourselves; we have it harder than a lot of people in this country do---but I think I tend to lose sight of the fact that there are also a lot of people who have it harder than we do.

Obviously I'm sorry to hear that....my mom had breast cancer about five years ago; she survived. If you or your mom want to talk to her about it, I know she'd be more than willing to provide support. She was really grateful when others who survived it supported her when she got it....I'll PM you w/ her e-mail if you want to talk to her or give it to your mom. Good luck.

-celiac3270

flagbabyds Collaborator

Sorry I don't know any groups.

I hope you both feel better.!

celiac3270 Collaborator

My mom thought she remembered some breast cancer support group that is worldwide called "glendas" or something.....she said it might come to her.

I found a few links on the internet......I'm sure you've already seen just about all of them by this point, but if not, here they are:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

miup2l8 Newbie

I know how you feel about your Mom - my brother is presently in a hospice center, battling cancer and it can be very stressful for all concerned. The hospital or your mother's doctor should be able to sent you in the right direction for support groups in your area.

Good luck to both of you and remember to eat well and to carry gluten-free snacks so you never are in a position that you have to "grab something". It important for you to be well enough to be of a help to your mother right now.

Niteyx13 Explorer

Wow, thank you all for the support, especially concidering how off-topic I have gone. I will look into the links and see what I can find.

Deanna

kalo Rookie

Hi Deanna. Sorry to hear of all your stress. I will be praying for your mother. You might try yahoogroups and see if there is a group. My mother had breast cancer but had a lumpectomy and did fine. Another friend of mine lost both of her breasts and is doing fine. And still another one had breast cancer and pulled through it. My grandmother also had it (moms side) but I don't remember how she did. Guess I should ask. Keep us posted and take care of yourself.


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



Celiac.com Sponsor (A8-M):



  • 5 weeks later...
Niteyx13 Explorer

Just thought I would update everyone about my mom and my gluten diet.

My mom had a bi-lateral mastectomy on monday (because the cancer she had had a high rate of showing up on the other side and she only wanted to do this once). Her lymph nodes were clear, praise God! Now she is just recovering from it all, and doing a wonderful job of it all. She is one tough cookie. Thank you all for the support I got about this, because it was so extremely off topic.

I have been on the gluten diet around 2 weeks, I think. I have been eating everything I can...lol...We went to Lone Star yesterday and I ate one of those onions (I love em!), but I don't know if it was the grease, or gluten, or what, but I was really sick the rest of the day with a big time stomach ache and gas pains. I have all the old symptoms back, and man am I exhausted and lethargic. I realize now how much better I felt gluten-free, and I am anxious to go back to it. Hopefully if I do the blood test around the end of this month it will all show up.

Thanks to everyone. =)

Deanna

tarnalberry Community Regular

Good luck to your mom, and a speedy recovery!

And good luck with your blood tests!

celiac3270 Collaborator

Glad to hear that she's doing better....I had actually been thinking about her the past few days, wondering how it was going, so thanks for updating us. When my mom had breast cancer, she had one of her breasts removed -- I think they said that they didn't have to take it off, but she wanted to to make sure there was nothing left and it couldn't spread.......she said "I don't eat with it, breathe with it, see with it so I'd rather be safe".......anyway, thanks for posting and I'm really happy to hear that everything turned out all right, it didn't spread to the lymph nodes or the other breast, etc. That's terrific news.....like I told you before, if she wants to talk to anyone or anything, she can e-mail my mom....I gave you her e-mail, but if you need it again, let me know. My mom had a breast reconstructed, and she's REALLY good with pain, but the doctor said that after that operation it would take a year to feel herself again. The doc. was right -- my mom said that she felt that maybe that was what he meant for the "wimps" lol who couldn't deal with pain and stuff, but she literally couldn't get up or hardly move after that operation -- so if you want to discuss options or whatever again, you're always welcome. Once again, I'm truly excited to hear that it went well. I'll let my mom know and I send my best wishes for a speedy recovery.

Niteyx13 Explorer

Thank you both for the responses.

celiac3270,

My mom is an RN and she agrees with the year to feel yourself again thing. She says it takes that long just to get the anesthetic they use completely out of your system. My mom is also doing the breast reconstruction. How did they do your mom's? Did they put the spacer thing in, and then have her go back later for the permanant implants? My mom is 67 so I was suprised when she decided to do the re-con (but then, in AZ state law requires insurance to pay for it). Please let me have your mom's E-mail address again. I will definately give it to my mom, sounds like they have some things they could talk about. Thanks a bunch!

Deanna <~~~back to taking 2 hour naps in the afternoon, and zoking out everynight (gluten-free it was all I could do just to go to sleep)! I can't wait to be gluten-free again! I must be crazy...lol

celiac3270 Collaborator

No, my mom did the tramflap, cause she wanted it to be from her own skin, muscles, etc., rather than something fake in her.......just scared of any complications that could occur from something artificial, I think. Oh, and I PMed you her e-mail address.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,032
    • Most Online (within 30 mins)
      7,748

    CE1963
    Newest Member
    CE1963
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.