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

Physically Im Doing Good

Moongirl

By Moongirl
in Coping with Celiac Disease

Recommended Posts

Moongirl Community Regular
Moongirl
Posted

So here I am 4 months gluten-free, physically I am feeling much better, tolerating foods better, not getting bloated, the stomach burning has just about stopped, overall i feel good.

Nowwwww here is the hard part, mentally its killing me. I almost break down and cry everytime I see people chowing down a pizza or cake. For instance my awesome bf took me to a Boston Bruins game, we were in the luxury box with the Director of Development for the Bruins and some other big wigs, so of course there was free everything. Beer, pizza, chicken fingers, hotdogs, great so I had a diet coke i was ok cause i had eaten dinner, but then they bring the desert tray!!! chocolate cheese cake, cookies, i dont what else i could bring myself to look at it all. I just about had to hold back my tears....now i feel like it happens more and more.

I get so frustrated. I feel so handicapped. I am only 26 and live a very busy social life, I dont know what I am going to do.... ;) I am scared to eat out, how do I overcome that too?

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

Celiac.com Sponsor (A8-M):


plantime Contributor
plantime
Posted

It sounds like you are facing the hardest part of the withdrawal. Temptation is hard enough without being very ill if you give in to it. Try carrying some of your own gluten-free goodies in your purse when you go out.

hez Enthusiast
hez
Posted

For me it was part of the mourning aspect of this disease. I would cry when I would realize I couldn't have something. Keep in mind it really wasn't the food I was crying over but the emotional connection to the food (I cried when I realized I would never be able to eat the girl scout cookies my dd will eventually sell). I would be lying if I told you that after a year of being gluten-free I have the emotional side under control. I still get sad and angry at this disease. Yet at the same time eating gluten-free has become a part of my life and is easier. Hopefully, someone else can write in about eating out. I still find it risky and limit how often I go out. Remember to take a deep breath and approach this one step at a time.

Hez

plantime Contributor
plantime
Posted

I eat out, but only at a select few, where I can talk to a manager or owner or chef.

ravenwoodglass Mentor
ravenwoodglass
Posted
So here I am 4 months gluten-free, physically I am feeling much better, tolerating foods better, not getting bloated, the stomach burning has just about stopped, overall i feel good.

Nowwwww here is the hard part, mentally its killing me. I almost break down and cry everytime I see people chowing down a pizza or cake. For instance my awesome bf took me to a Boston Bruins game, we were in the luxury box with the Director of Development for the Bruins and some other big wigs, so of course there was free everything. Beer, pizza, chicken fingers, hotdogs, great so I had a diet coke i was ok cause i had eaten dinner, but then they bring the desert tray!!! chocolate cheese cake, cookies, i dont what else i could bring myself to look at it all. I just about had to hold back my tears....now i feel like it happens more and more.

I get so frustrated. I feel so handicapped. I am only 26 and live a very busy social life, I dont know what I am going to do.... ;) I am scared to eat out, how do I overcome that too?

It will get better with time, it may not go away completely but it will become less painful. As another poster said it is very much a greiving process the best way to get through it is to try and be prepared. I always have chocolate available, I love it and it helps that I can have M&M, silly I know. I don't trust anyplace to feed me so I eat at home but I was very, very sick before diagnosis and have a lot of related problems from years of this being misdiagnosed. I would give anything to have been diagnosed in my twenties, so many problems would not have developed. Fell free to cry and get angry it is part of the process, come here and vent and learn. Most of all be thankful they caught this while you are still young, while it is tough right now eventually you will come to realize how very, very different your life would be if they had not found it out for another 20 years. Things will get better.

bluejeangirl Contributor
bluejeangirl
Posted

Hi Moongirl,

I've been gluten free for the same time you have but I haven't been to alot of social events yet. But the invites are starting as summer is approaching. The one thing I hate is I used to compare myself to someone who is on a diet as many are and have to pass up these foods too but the thing is they CAN cheat and we can't. Its having no choice in the matter that makes one feel frustraing. But it can also be our freedom. We just don't think about it,..it no and I won't even dwell on it. Just think of the dieter deliberating over what to have and how they'll have to feel in the morning to jump back on the wagon.

I think what I'll do is take the one thing that will really bug me cuz I can't have it, like maybe that chocolate cheese cake. I'll let it inspire me to make it gluten free the next day. So it will only be a delayed satisfation. Which builds character right? hehe Well thats the best I can come up with.

hugs,

Gail

Moongirl Community Regular
Moongirl
Posted
  • Author

Thanks for all your advice. I guess this forum helps more then medicine or a therapist, cause its soo ture no one really understands but us. And just being able to talk to people, even if it is through a computer, helps just that little bit, that it can make u smile instead of cry for once.

So thanks :rolleyes:

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

Celiac.com Sponsor (A8-M):


StrongerToday Enthusiast
StrongerToday
Posted
Thanks for all your advice. I guess this forum helps more then medicine or a therapist, cause its soo ture no one really understands but us. And just being able to talk to people, even if it is through a computer, helps just that little bit, that it can make u smile instead of cry for once.

So thanks :rolleyes:

This forum has helped me so much more then my dr., therapist, nutritionist... there is so much to be learned from others that have been through this. I mean, who else could I talk to about how many days in row that I've been having solid poops :D (and who else would care?!?)

And I agree - it is sad. Food is so much more then just food. It does help that I've retrained my thinking and am now working on more of an "eat to live - don't live to eat" philsophy. I've also given up dairy, by far my favorite food group, so that makes it really tough.

But I feel so much better, I look so much better.... I'm worth it!!

Jnkmnky Collaborator
Jnkmnky
Posted

Kinnikinnick chocolate cake mix is really good. Not dry or crumbly. MOIST. And dark chocolate fudge frosting by Pilsbury helps too. That would make me feel better... :)

mitch Newbie
mitch
Posted
For me it was part of the mourning aspect of this disease. I would cry when I would realize I couldn't have something. Keep in mind it really wasn't the food I was crying over but the emotional connection to the food (I cried when I realized I would never be able to eat the girl scout cookies my dd will eventually sell). I would be lying if I told you that after a year of being gluten-free I have the emotional side under control. I still get sad and angry at this disease. Yet at the same time eating gluten-free has become a part of my life and is easier. Hopefully, someone else can write in about eating out. I still find it risky and limit how often I go out. Remember to take a deep breath and approach this one step at a time.

Hez

I was just diagnosed with celiac's three weeks ago. I am 39 years old and have been going through health issues for the last ten years. I have always just eating out where ever i wanted too. I heard that the outback had a gluten free menu. I did try it and I had a reaction to the BBQ sauce that was suppose to be gluten free. I have the same feelings when it comes to being out shopping or something and I am hungry. I realize that I can't eat anything and I get really upset and angry. Your whole life changes, I was invited to a BBQ over the weekend and I realized that I am not ready to deal with going to a BBQ and not being able to eat. I am glad that I found this forum, it's nice to see that there are people who totally know what you are going through.

Guest nini
Guest nini
Posted
I was just diagnosed with celiac's three weeks ago. I am 39 years old and have been going through health issues for the last ten years. I have always just eating out where ever i wanted too. I heard that the outback had a gluten free menu. I did try it and I had a reaction to the BBQ sauce that was suppose to be gluten free. I have the same feelings when it comes to being out shopping or something and I am hungry. I realize that I can't eat anything and I get really upset and angry. Your whole life changes, I was invited to a BBQ over the weekend and I realized that I am not ready to deal with going to a BBQ and not being able to eat. I am glad that I found this forum, it's nice to see that there are people who totally know what you are going through.

The BBQ sauce at Outback is gluten-free, BUT the risk of cross contamination ANY TIME you eat out is very high. Since you are still in the learning stages of the diet, maybe try to avoid eating out for a little while (just til you get more comfortable with the diet) and if you do go out with friends or family, do it to socialize... just get a drink and carry some snacks that you can munch on while everyone else is eating...

I know that food is so much more than just feeding us, it is emotional attachments, comfort, acceptance, blah blah blah! HA HA HA!! But, the wisest advice is "Eat to live not live to eat" I found one brand of crackers I really like, EnerG, and I also carry Enjoy Life Foods snack bars with me all the time. They help when I'm really hungry and I need something to nibble.

As far as going out to BBQ's with friends, take your own meat, your own bbq sauce, and have your meat grilled IN OR ON FOIL... that will help cut down the risk of cross contamination. Don't avoid going somewhere because of fear or because it won't be convenient to bring your own food. You do not want to give up your social life just because of this. You will get the hang of it, and yes occassionally you will get exposed to some accidental gluten, we all do, don't beat yourself up over it. Don't intentionally cheat either, but keep in mind it does get easier.

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Hi Moongirl -- I'm so sorry that you're going through this. I have been gluten-free for 8 months now. I still have difficulty with the struggles. Birthdays are AWFUL for me. Our family is huge on the celebrations, and there is nothing made for me with regard to the cake and ice cream (dinner is definitely made gluten-free for me). Still, though, it's very difficult not participating in the cake & ice cream thing. I feel like odd-man out. I had a particularly low period just a few weeks ago . . . and the support and love that came from the people on this forum was nothing less that amazing.

What I can tell you is that this is the place to vent, and to get all those feelings out. The friendships that I have developed through this forum are priceless. These are the finest people you will find, and the most supportive available.

I was always a "no forums, no support groups . . . . " type of person. I thought, because of my experience administrating an arthritis support group, that it was a "whiner" option. The one that I administrated may have been that, but nothing is farther from that than this forum. Yes, it is the place that you can vent all the emotions that you won't tell your spouse, family, etc., and to get emotional support. But also it is the place to get very valuable information about this disease, coping mechanisms, alternative diet choices, and an unbelievable amount of information regarding diet, weight, restaurants, cooking -- you name it. The people on this forum are the most pro-active that I've met. They are determined to take control of their health, and are more than willing to share their victories and defeats with their trials.

Please know that you are not alone. I think that all of us have gone through the place where you are now. I do believe that it is part of the grieving process, and part of accepting that, for whatever reason, this stupid disease is here to stay with us. I am sending you {{{{{hugs}}}}} and prayers. Take care of you . . . . Lynne

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,633
    • Most Online (within 30 mins)
      7,748
    Sandra Lene
    Newest Member
    Sandra Lene
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Buckwheat

      By Inkie · Posted

      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Frequent nausea after gluten-free diet

      By Wheatwacked · Posted

      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
    • Inkie
      Thee

      By Inkie · Posted

      I  notice a reaction to tea bags, possibly due to gluten or other substances. Is this recognizable?
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
×
×
  • 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.