Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Dealing With The Changes
0

9 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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 )

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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:

0

Share this post


Link to post
Share on other sites

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!!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,344
    • Total Posts
      917,398
  • Topics

  • Posts

    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,478
    • Most Online
      1,763

    Newest Member
    Andrew Miller
    Joined