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. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

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

    • Total Members
      132,915
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.