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

How Do You Cope With The Health Side?


Coleslawcat

Recommended Posts

Coleslawcat Contributor

Ever since being diagnosed I've been learning more and more about all the potential long term problems. Of course, the increased risk of cancer is highest on my worry list. I know for most cancers the risk goes down after 5 years gluten-free, but seeing as I was just diagnosed a month ago that is still 5 years off. I'm having a relatively easy time handling the adjustment to gluten-free, but I am just paranoid about my health now. This morning I woke up with a swollen painful lymph node in my neck. Prior to my diagnosis I would have shrugged it off and thought nothing of it. Instead I am fraught with worry and made an appointment to see my PCP. Am I the only one reacting this way? I feel so out of control about my health now. I took up jogging earlier this month as an attempt to regain some control of my health since I feel as if I lost so much.


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

Well, I try not to worry myself over it too much. I just eat the healthiest I know how, and take the supplements that I find helpful. I mean, what else could I do? As far as I can see, doctors are basically useless until something goes wrong. It's damage control, not health care. Caring for one's health is up to each of us to do for ourselves.

Some people do all sorts of foolish things that the rest of us know will come back to bite them later, while others worry like a hypochondriac over everything. If I have cancer or something lurking, I actually don't want to know. I want quality of life, not quantity. I'd rather have a short healthy life than a long, sickly one. Every person I have ever known who died prematurely, went downhill like a freight train once a doctor diagnosed them. Before that point, the problem didn't seem so severe. So I think once you make up your mind that you're seriously ill, the body follows suit and allows itself to experience the full potential of how sick you think you are. I think the placebo effect works both ways. That is, a sugar pill can make someone feel better if they believe it will, and the belief that something is wrong can actually manifest the problem.

I heard a saying once; The thing about life is that nobody gets out alive.

We're all going to bite the bullet some day. So you can either enjoy the time you have, and make the best of it, or you can spend that time worrying about the end of it.

jackay Enthusiast

The chances are you will not get cancer within the next five years. By staying gluten free, you may be preventing cancer in the years to come after that. Think if it this way, there is a chance of getting cancer now, but even less of a chance of getting it after five years. Hopefully each day closer to the five years, you are that much further away from cancer.

If you are feeling ill because of gluten, you may be a lot less worried about getting sick once you start feeling better. I worried about so much at first because I was feeling so lousy. Once I started feeling better, the worrying went away.

woodnewt Rookie

I take each day as it comes. No point in worrying about something that hasn't happened yet.

Reba32 Rookie

Now that you know what was making you sick, and how to prevent future illness, the chances of actually getting sick are less.

For myself, I know that because I was undiagnosed for so long, that my lifespan is likely to be shortened from the average, but still, I have an Aunt who is 94 this year and she still lives on her own! So I know the genes are good, but who really wants to live that long anyway! ;)

Just take care of yourself now, and that'll take care of later.

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. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

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

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.