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

Dealing With The Changes


Tutahl75

Recommended Posts

Tutahl75 Apprentice

Hey,

I've been Gluten Free for over seven months now. It used to bug the hell out of me dealing with the changes associated with the diet. I became very sensitive to all walks of my life. I've had some positive changes in my life recently that have helped me cope. I do still get into ruts however (re-occuring symptoms, tension, sleeplessness).

Would anyone share their coping strategies with me. I'd like to hear some different perspectives on lving and dealing with the changes in their lifestyle due to Celiacs.


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



Celiac.com Sponsor (A8-M):



Nadtorious Rookie

Isn't it such a pain sometimes? You envy anyone that can eat whatever they want and not have to think about it. :D

I was diagnosed with celiac disease over 2 years ago and I'm still not quite comfortable with it yet. I'm also incredibly hypoglycemic, so I really have to watch what, when, and how much I'm eating.

I think I've become kind of detatched from food at this point. I'm a very active person, so when I'm hungry, the question isn't "what sounds good". I try to eat foods that will give me sustained energy, without doing any harm to my body. I've found that having a significant reason to stick with such a disciplined lifestyle has made it a lot easier. I used to cheat-now I know the consequences will be sitting in my house and feeling sorry for myself. I feel like a "normal", 100% human being when I stick to the diet. This has been enough reason for me.

Good luck-

Nadia

Professor Rookie

I've been diagnosed for 10 years now, and have good years and bad ones. I am having a tough year (just tough in dealing with it) now, although the two before it were fine. Wonder why . . . ? Maybe because I can no longer do dairy, soy, and eggs? Really feeling the limits of diet.

Anyway, I liken it to a 12-step program (no, I'm not making light of alcoholism, which is obviously a far more serious problem than celiac disease), but meaning it's just "one day at a time" for us. Wish I could say that after a while you get used to it and then it's all downhill. :( Also, whenever I change or expand my social or work circle (new job, for example), I have to keep facing all the issues I did at diagnosis all over again. Tired of it all. :P

Well, that's why we have this place, right? At least here there's a group of people who "get it." :D

Hang in there! ;)

Patty

(I live these little faces -- can you all tell?!? :D )

KaitiUSA Enthusiast

I've been gluten-free for a little over a year now. I feel a lot better but yes there are some tough days I have to deal with. I take vitamins, enzymes, and probiotics regularly. Those things hep to boost my immune system... celiac is an autoimmune disease and our immune systems tend to be weaker. I notice when I miss a day having these supplements I pay for it the next day. I guess my body needs the extra support.

The longer I have been off of gluten the more reaction I get when I have gluten now. I have a lot worse reaction to gluten now then when I first was diagnosed. I never purposely cheat but I know if something has snuck within a few minutes.

Also make sure your makeup like your lipstick is gluten-free. I had a horrible reaction the other week and I didn't know what it was from. Come to find out the vitamin E in the lipstick they had was made of wheat. It just shows how much we have to be careful.

Good luck with everything :D

bklyn Enthusiast

I have a slightly different issues than many of the other people who post here. I have no gastro symptoms and was diagnosed because of low iron. I have been gluten-free about 6 months, but most of the problems I've faced have been psychological. I was totally blindsided by this diagnosis (because of no symptoms) and found it hard to accept that I had to face this lifestyle change. All of the possible complications put me in a tailspin, and the resulting worry and stress have caused me problems with fatigue (result of stress.) I have started to see a therapist to help me work through these problems and try to live one day at a time, rather than worrying all the time about the "what ifs". I tend to feel sorry for myself when I can't just grab a bite to eat at the mall. Eating out is an important part of my family's social life and now it all revolves around where I can eat.

tarnalberry Community Regular

I try to deal with it in whatever way seems appropriate for the particular stress. For instance, over the holidays, with all the formal work parties (which I was helping organize), I got tired of having to time to make real food I could before or after a party, and sitting there watching others eat. So I didn't go to each and every one I could have. I went to a couple of them - it's still important to be social :) - but I also gave myself permission to say no, just because I wanted to.

I don't know if this is an issue for you or not (it seems to vary by individual), but I learned early on to "be selfish" (in the good way) about my health. Someone may offer me something, but there should be NO guilt in saying no because it's my responsibility to not eat things that are dangerous to me. If someone offered you rat poison, you wouldn't feel guilty for turning it down, and this is a very similar thing. It's tougher, though, because OTHER people think of wheat as food. In the end, it doesn't really matter what they think - it's food for their body (maybe! ;) ) but not for mine! I'm not rude about it, just very matter of fact, as though it were the most basic thing in the world that I can't eat gluten.

Another thing I do when I'm feeling overwhelmed - and it's usually because of time, or the lack of time to make my food (and gluten is the lesser of the problems, dealing with the hypoglycemic tendencies is by far the trickier one - if it was just gluten, I'd keep leftover rice in the fridge at all times! :D ) - I make myself sit back and refocus on what I'm eating. I spend a little extra time (I make the time, because it's important) at the grocery store, finding things I will eat that week that will be good for my body, and generally refocus.

And when all else fails, a piece of Gluten-free Casein-free chocolate. :lol:

luvs2eat Collaborator

When I was diagnosed (2+ years ago), I'd only had symptoms for several months, but when my doc told me I had Celiac Disease and I read what it can do to your small intestine, I very simply stopped eating wheat/gluten. This may sound dumb... but it never occured to me that I had a choice to "cheat" and hurt myself... I just stopped eatihg wheat/gluten and researched and researched food lists and ways to change existing recipes.

I kept saying, and still say to people... in the scheme of life and with everything that happens to people... this is nothing. There is so much I can eat... my celiac seems to me to be mild... no diary issues, no skin issues... my ONLY symptom was diarrhea and iron deficiency ... no pain, bloating... nothing. I consider myself so lucky to have so few physical symptoms.

It did take a whole year for my digestive system to return to normal... but it's as right as rain now. I still don't see "cheating" as an option... and don't find it hard to stay away from wheat/gluten. If I don't know if there's wheat/gluten, I don't eat it... simple as that.

Now that I've found a bread mix that makes wonderful sandwiches, I am a happy camper!!


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



Celiac.com Sponsor (A8-M):



jknnej Collaborator

It also helps to have a good support system. My hubby is great; only times he gets frustrated is when we're on vacation and he wants to eat at a nice restaurant. I tell him I will still go with him but it's not the same for him. I refuse to eat out; I simply won't risk cross contamination. Just made that decision about a week ago but I'm sticking to it.

This disease requires you to put thought into something you normally wouldn't; where, when, how you eat. Even dieters don't have this problem. If they're stranded somewhere they can still eat something unhealthy; we, however, would suffer the consequences.

I'm frustrated today because I'm going on a choir competition and I'm the only one carrying a cooler filled with ice and gluten-free foods. Everyone else just gets to stop at McDonalds or Subway and eat. It sucks.

But I would take feeling healthy over ALL of the inconveniences anyday. That's why I'm going this. I could chance it and go to McDonalds myself. But I'm not willing to..I want to feel great when we perform.

We just come here and talk to each other and it helps....I've also simply accepted the fact that no matter how busy I am ( I leave the house at 6:30am and get home around the same time or later, have weekend job committments, etc) I simply MUST take time to cook my meals each week. Sometimes it's frustrating but when the week hits and I already have my meals in the fridge, I'm so proud of myself.

KaitiUSA Enthusiast

Jknnej- A strong support system is so helpful! My mom has a severe wheat allergy but my dad does not have any food restrictions and they don't even bring anything containing wheat and gluten in the house. If my dad wants anything he will eat something before he comes home or at work. I definately understand the whole inconvenience thing and completely agree with you it is well worth it to be cautious. :D

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. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    3. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    5. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,471
    • Most Online (within 30 mins)
      7,748

    731049
    Newest Member
    731049
    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

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.