Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

3 Weeks Into Celiac Diet Frustrations


cyoshimit

Recommended Posts

cyoshimit Apprentice

I have just arted to be gluten free. This Monday I will be starting my 4th week of my gluten free diet. I would just like some advice words of encouragement regarding living a life with Celiac. For the most part I am an optimist about this new life style but lately my mental wellbeing is being tested. I have irrational fears and insecutities about this that I have ignored and they are bitting me in the butt right now. I feel like I am spiraling down into my depression again. I feel stressed out by chaneing my life style while attenting college. I live at home and I am getting some support. I am mostly frustrated because my energy is not what it used to be, I cant stay at school long and its a struggle to keep up with my studies. I would LOVE to spend hours on end working on my paintings and drawings but I am held back by fatigueness, not being ble to stay at school to paint because I need to eat. I usually bring food for myself to eat, but lugging my bag books and a lunch cooler around is another stress. I know that these feelings will pass but right now going through it is really difficult. I miss who i used to be, I feel isolated and like a different person, I do not like to be volnerable so im feeling uncomfortable right now. If anyone can tell me how they get through their regular days or share their stories with me that would be great.

Thank you,

Cherie


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



Celiac.com Sponsor (A8-M):



Mtndog Collaborator
I have just arted to be gluten free. This Monday I will be starting my 4th week of my gluten free diet. I would just like some advice words of encouragement regarding living a life with Celiac. For the most part I am an optimist about this new life style but lately my mental wellbeing is being tested. I have irrational fears and insecutities about this that I have ignored and they are bitting me in the butt right now. I feel like I am spiraling down into my depression again.

I feel stressed out by chaneing my life style while attenting college. I live at home and I am getting some support. I am mostly frustrated because my energy is not what it used to be, I cant stay at school long and its a struggle to keep up with my studies. I would LOVE to spend hours on end working on my paintings and drawings but I am held back by fatigueness, not being ble to stay at school to paint because I need to eat. I usually bring food for myself to eat, but lugging my bag books and a lunch cooler around is another stress. I know that these feelings will pass but right now going through it is really difficult. I miss who i used to be, I feel isolated and like a different person, I do not like to be volnerable so im feeling uncomfortable right now. If anyone can tell me how they get through their regular days or share their stories with me that would be great.

Thank you,

Cherie

Hi Ccherie- Welcome to the board! Right now is the toughest part- getting started. It only gets easier from here. Think of it this way- your body has been taking a beating from eating gluten and it is tired and malnourished. It needs rest and good, gluten-free food.

It took me a long time to really *get* the diet down (I only ate peanut butter and anything marked gluten-free for the first month because I was so confused about what was safe and what wasn't). I was in graduate school at the time and had just gotten married so it was a big adjustment. Luckily, I found this board which was a lifesaver.

It makes sense to mourn the loss of a lifestyle that you had and to feel isolated and vulnerable. These feelings will pass once you start to feel better.

At first, I felt really awkward bringing my own food places but I started to cook more (something I never did) and found out that not only did I enjoy it, I was actually pretty good at it. So I started making dishes that I could share (half the time people never even knew the dishes were gluten free.

In the 5 years I have been gluten-free, a LOT more awareness about it has developed. I used to get these looks like "What? You can't eat that? It must be so hard?" Now I get the "'Oh yeah, my best friend/roommate/someone I work with has that too and she makes the best brownies!"

I think that college is probably one of the more difficult times to have to go gluten-free (dining halls, parties, roommates) but you WILL be OK.

Give yourself time to heal and adjust and you will be painting and drawing and doing ALL the things you want to do before you know it!

heatherjane Contributor

It's a struggle for everyone at first, and some of us take longer than others to start feeling better. The adjustment to this new lifestyle, in general, can be a challenge in itself. You'll get through this tough part. Surround yourself with good people (if you can find a local support group, that's even better) and take it one day at a time. Just remember that you're not alone in the journey.

butterfl8 Rookie

I'm so sorry, and I feel your pain and frustration. I'm on week 8 and I can really understand the feeling of seperation from everything else. My husband keeps reminding me that my body is healing, and that will take time. So hopefully, this difficult time for us will pass quickly, and we will end up feeling better afterwards! Right?!? Take care!

-Daisy

ang1e0251 Contributor

For all of the newbies, you will feel better. I promise, time will little by little get you there. This problem didn't start all at once. It built over time and it makes sense that you will not heal all at once. In the meantime, all of you could benefit from vitamin supplements. They have been key in my healing especially the fatigue. Remember that you have not been absorbing the nutrition you need and are probably very low on rescources. You need a good B complex. Probably additional B12 (sublingual methyl type), get some fish oil and some sunshine for D, magnesium and calcium. Vitamin C is good for depression too.

Hang in there and take your vitamins!

Ahorsesoul Enthusiast

Cherie,

Hang in there. You will feel better. Some of what you are feeling may just be from starting back to school. Let your body get adjusted to the new schedule and the demands from college work.

Slowly chip away at what's bothering you the most, there are other ways of eating and doing things that will work for you. We are all behind you. Come vent with us anytime.

And remember eating Gluten free is the new way of eating. You are a leader in this aspect of life.

Surattius Newbie

Cherie,

Very sympathetic on the frustration with having to pack your own food everywhere and getting tired when you don't eat! Also, college under even the BEST of circumstances is tough and frustrating. I was so depressed in first year university.... and I was not gluten free then!

Lighter foods: almonds, figs, dried bananas...?


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



Celiac.com Sponsor (A8-M):



cyoshimit Apprentice
Hi Ccherie- Welcome to the board! Right now is the toughest part- getting started. It only gets easier from here. Think of it this way- your body has been taking a beating from eating gluten and it is tired and malnourished. It needs rest and good, gluten-free food.

It took me a long time to really *get* the diet down (I only ate peanut butter and anything marked gluten-free for the first month because I was so confused about what was safe and what wasn't). I was in graduate school at the time and had just gotten married so it was a big adjustment. Luckily, I found this board which was a lifesaver.

It makes sense to mourn the loss of a lifestyle that you had and to feel isolated and vulnerable. These feelings will pass once you start to feel better.

At first, I felt really awkward bringing my own food places but I started to cook more (something I never did) and found out that not only did I enjoy it, I was actually pretty good at it. So I started making dishes that I could share (half the time people never even knew the dishes were gluten free.

In the 5 years I have been gluten-free, a LOT more awareness about it has developed. I used to get these looks like "What? You can't eat that? It must be so hard?" Now I get the "'Oh yeah, my best friend/roommate/someone I work with has that too and she makes the best brownies!"

I think that college is probably one of the more difficult times to have to go gluten-free (dining halls, parties, roommates) but you WILL be OK.

Give yourself time to heal and adjust and you will be painting and drawing and doing ALL the things you want to do before you know it!

Thank you for sharing your experience and knowlege with me. It really brings me back down to think rationally about this. Thank you.

cyoshimit Apprentice
It's a struggle for everyone at first, and some of us take longer than others to start feeling better. The adjustment to this new lifestyle, in general, can be a challenge in itself. You'll get through this tough part. Surround yourself with good people (if you can find a local support group, that's even better) and take it one day at a time. Just remember that you're not alone in the journey.

Thank you, I will remeber to take it one day at a time and that I have support here and through my family as well.

cyoshimit Apprentice
I'm so sorry, and I feel your pain and frustration. I'm on week 8 and I can really understand the feeling of seperation from everything else. My husband keeps reminding me that my body is healing, and that will take time. So hopefully, this difficult time for us will pass quickly, and we will end up feeling better afterwards! Right?!? Take care!

-Daisy

Yes we will feel better =) thank you for sharing your story with me and for the support.

cyoshimit Apprentice
For all of the newbies, you will feel better. I promise, time will little by little get you there. This problem didn't start all at once. It built over time and it makes sense that you will not heal all at once. In the meantime, all of you could benefit from vitamin supplements. They have been key in my healing especially the fatigue. Remember that you have not been absorbing the nutrition you need and are probably very low on rescources. You need a good B complex. Probably additional B12 (sublingual methyl type), get some fish oil and some sunshine for D, magnesium and calcium. Vitamin C is good for depression too.

Hang in there and take your vitamins!

I am working with a Holistic dr. I am on all kinda suppliments to help my body heal. I've been working with this dr for a long time he has been helping me with the depression and now the celiac. Im working really hard to heal and keep up with all my nutrients I know how important it is to keep it up, school is extremely important to me so eating regularly and taking suppliments are on the top of my list. =)

cyoshimit Apprentice
Cherie,

Very sympathetic on the frustration with having to pack your own food everywhere and getting tired when you don't eat! Also, college under even the BEST of circumstances is tough and frustrating. I was so depressed in first year university.... and I was not gluten free then!

Lighter foods: almonds, figs, dried bananas...?

thank you, i will try the almonds and figs =) Iv been packing banana chips, gluten free prezelts and raisins with me, an apple, and my protein drink for me to snack on and bring luch with me on longer days. Figs sound ymmy!

cyoshimit Apprentice
Cherie,

Hang in there. You will feel better. Some of what you are feeling may just be from starting back to school. Let your body get adjusted to the new schedule and the demands from college work.

Slowly chip away at what's bothering you the most, there are other ways of eating and doing things that will work for you. We are all behind you. Come vent with us anytime.

And remember eating Gluten free is the new way of eating. You are a leader in this aspect of life.

thank you for the encourage ment and coping tips. I will try them and keep reminding myself about this positive lifestyle change =)

MightbeCeliac's Newbie
I have just arted to be gluten free. This Monday I will be starting my 4th week of my gluten free diet. I would just like some advice words of encouragement regarding living a life with Celiac. For the most part I am an optimist about this new life style but lately my mental wellbeing is being tested. I have irrational fears and insecutities about this that I have ignored and they are bitting me in the butt right now. I feel like I am spiraling down into my depression again. I feel stressed out by chaneing my life style while attenting college. I live at home and I am getting some support. I am mostly frustrated because my energy is not what it used to be, I cant stay at school long and its a struggle to keep up with my studies. I would LOVE to spend hours on end working on my paintings and drawings but I am held back by fatigueness, not being ble to stay at school to paint because I need to eat. I usually bring food for myself to eat, but lugging my bag books and a lunch cooler around is another stress. I know that these feelings will pass but right now going through it is really difficult. I miss who i used to be, I feel isolated and like a different person, I do not like to be volnerable so im feeling uncomfortable right now. If anyone can tell me how they get through their regular days or share their stories with me that would be great.

Thank you,

Cherie

Gosh you just described everything I've been dealing with for the past couple years. Just replace college with job, stuies with promotion and paint and draw with exercise and write. It is hard, frustrating and depressing. I've been gluten free for 7 months now and for the most part I'm okay. The accidents cause me problems though and I don't know how to get people around me accept the fact that I'm still not recovered and their expectations just have to be somehwat different.

Hang in there though keep carrying your own lunch, add some vitamins and get lots of rest. Thats what you need now. Also some of your physical symptoms may require additional treatment or care in the form of supplements or expanding your diet to include certain beneficial food. Flax meal is a great source of Omega 3 oils.

Shess0816 Apprentice

Cherie -

I completely understand where you are coming from and don't worry, you're not alone! I was diagnosed in March of this year and I'll be honest, my first month was really really rough! I can promise you that it does get better from there though! I actually just found this board too and I wish I would have found it sooner! It's always nice to know you're not the only one feeling alone and frustrated!

I think the first important think you should do is find yourself some support since you made it sound like you're not getting it at home. A lot of cities have Celiac support groups that meet monthly to discuss issues, give advice, try new types of foods, and just provide somewhere that you can vent! I've been to our meeting here in Nebraska several times and it really really helps!!

Second, realize that this is a MAJOR change to what you're used to. Give yourself some time to get used to the idea that your life will be different -- and that if you can make yourself stick with it, you'll feel SO MUCH better in the long run!

With respect to the tiredness issue, the first 6 weeks or so I started the no gluten diet, I was EXHAUSTED! Way more than normal! There were some days I could not get out of bed to go to work because I was so tired! After talking with a nutritionist, I finally figured out that 1) I was not getting enough calories every day because I was not eating how I used to eat 2) I was not getting all the vitamins I needed and 3) my body was working very hard to get rid of all the bad stuff in my body. I fixed the first issue by making sure I get balanced meals. I actually eat 6 meals a day now -- smaller ones of course! I eat breakfast -- usually cereal or some gluten free waffles. Then I'll have a snack in between breakfast and lunch -- usually fruit or veggies or sometimes chips or popcorn. Then I'll have lunch -- if I'm at work, sometimes I bring leftovers from dinner. I have also found these really conveninet little meals called Asian Sensations (I think). They are rice noodle bowls -- kind of like soup -- and they state gluten free right on the package. All you have to do is add hot water and let it sit for a couple minutes. Those you could probably just throw in your backpack. Then after lunch, I have a snack when I get home from work -- usually peanut butter and gluten free crackers. Then I make dinner for my boyfriend and I pretty much every night -- I usually will get a gluten free soup, put it in a casserole dish, put some frozen veggies in there, some cheese, and then some chicken or pork chops (something like that) and let it cook in the oven on 375 for about an hour and a half. Super easy to make and it tastes great! Then I have a snack after dinner -- something I love and have wanted all day long usually -- most of the time it's ice cream because that's something I had before that I can still have now.

The big thing to remember is that you can still have a lot of the things you used to have. They are just made differently. IF you like chips, you can still have chips, you just have to find gluten free ones. If you liked bread and sandwiches, just find a gluten free bread (which admittedly is not as good) and make yourself one. There are a lot of pizza places now (I'm not sure where you live) that have gluten free crusts, so a lot of places still provide that for you. Also, look at your local restaurants in your area -- like Chili's or Outback -- there are a LOT of places that have gluten free menus and if you talk to the manager they will be very careful preparing your meal.

Hope some of this helps!! I know it's tough, but I promise it DOES get better!!

Sally

cyoshimit Apprentice
Gosh you just described everything I've been dealing with for the past couple years. Just replace college with job, stuies with promotion and paint and draw with exercise and write. It is hard, frustrating and depressing. I've been gluten free for 7 months now and for the most part I'm okay. The accidents cause me problems though and I don't know how to get people around me accept the fact that I'm still not recovered and their expectations just have to be somehwat different.

Hang in there though keep carrying your own lunch, add some vitamins and get lots of rest. Thats what you need now. Also some of your physical symptoms may require additional treatment or care in the form of supplements or expanding your diet to include certain beneficial food. Flax meal is a great source of Omega 3 oils.

Congrats on the promotion =)

" don't know how to get people around me accept the fact that I'm still not recovered and their expectations just have to be somehwat different."

I have that problem with myself too, and getting myself to accept that i just cant do the things i used to right now. Like today I had to skip out on school, it was a really hard decision but i knew that it would be dangerous for me to be driving and that I might not have the energy to get back home. Ill keep up with my vitamins and give myself time. thank you for sharing your experiences.

cyoshimit Apprentice
Cherie -

I completely understand where you are coming from and don't worry, you're not alone! I was diagnosed in March of this year and I'll be honest, my first month was really really rough! I can promise you that it does get better from there though! I actually just found this board too and I wish I would have found it sooner! It's always nice to know you're not the only one feeling alone and frustrated!

I think the first important think you should do is find yourself some support since you made it sound like you're not getting it at home. A lot of cities have Celiac support groups that meet monthly to discuss issues, give advice, try new types of foods, and just provide somewhere that you can vent! I've been to our meeting here in Nebraska several times and it really really helps!!

Second, realize that this is a MAJOR change to what you're used to. Give yourself some time to get used to the idea that your life will be different -- and that if you can make yourself stick with it, you'll feel SO MUCH better in the long run!

With respect to the tiredness issue, the first 6 weeks or so I started the no gluten diet, I was EXHAUSTED! Way more than normal! There were some days I could not get out of bed to go to work because I was so tired! After talking with a nutritionist, I finally figured out that 1) I was not getting enough calories every day because I was not eating how I used to eat 2) I was not getting all the vitamins I needed and 3) my body was working very hard to get rid of all the bad stuff in my body. I fixed the first issue by making sure I get balanced meals. I actually eat 6 meals a day now -- smaller ones of course! I eat breakfast -- usually cereal or some gluten free waffles. Then I'll have a snack in between breakfast and lunch -- usually fruit or veggies or sometimes chips or popcorn. Then I'll have lunch -- if I'm at work, sometimes I bring leftovers from dinner. I have also found these really conveninet little meals called Asian Sensations (I think). They are rice noodle bowls -- kind of like soup -- and they state gluten free right on the package. All you have to do is add hot water and let it sit for a couple minutes. Those you could probably just throw in your backpack. Then after lunch, I have a snack when I get home from work -- usually peanut butter and gluten free crackers. Then I make dinner for my boyfriend and I pretty much every night -- I usually will get a gluten free soup, put it in a casserole dish, put some frozen veggies in there, some cheese, and then some chicken or pork chops (something like that) and let it cook in the oven on 375 for about an hour and a half. Super easy to make and it tastes great! Then I have a snack after dinner -- something I love and have wanted all day long usually -- most of the time it's ice cream because that's something I had before that I can still have now.

The big thing to remember is that you can still have a lot of the things you used to have. They are just made differently. IF you like chips, you can still have chips, you just have to find gluten free ones. If you liked bread and sandwiches, just find a gluten free bread (which admittedly is not as good) and make yourself one. There are a lot of pizza places now (I'm not sure where you live) that have gluten free crusts, so a lot of places still provide that for you. Also, look at your local restaurants in your area -- like Chili's or Outback -- there are a LOT of places that have gluten free menus and if you talk to the manager they will be very careful preparing your meal.

Hope some of this helps!! I know it's tough, but I promise it DOES get better!!

Sally

Thank you so much for sharing what you went through and your experiences. Today is one of them days that i couldnt get going right and i had to stay home from school. For me that decision was extremely frustrating. I get some support at home but there is just alot going on here that family is all scattered all over. My nephews 1st bday is coming up this weekend and they are planning a big party =) I believe when you say that it will get better. It can only get better right? Like you said I just have to give myself time to heal... im so impatient ;)... When my head gets clearer and out of this fog I search for more foods I can eat and recipies that I can make. Thank you =)

Lost Scribe Newbie

Cherie,

The period of mourning associated with a new gluten free diet is totally expected. When I went gluten free I cried for days. It made me resentful to hear of other people going to parties and out to eat. It was horrible! I was afraid to eat anything, and lost a ton of weight because I lived on chicken breasts and veggies.

My saving grace came from my sister who was helping my niece live a gluten free lifestyle. She would give me information, updates and encouragement. I slowly realized that the more I learned about gluten and all things associated with it, the better I felt. I began writing articles with the thought of, "If I wanted to know this, maybe others do too." It became a kind of therapy for me. The more articles I researched and wrote, the more I became okay with being a member of the gluten free elite. :D

Maybe it would help to incorporate a little of your new found knowledge into your work. There is a lot of motivation to be found sharing with others.

Mtndog Collaborator
Maybe it would help to incorporate a little of your new found knowledge into your work. There is a lot of motivation to be found sharing with others.

Wait until they taste flourless chocolate cake!

cyoshimit Apprentice
Cherie,

The period of mourning associated with a new gluten free diet is totally expected. When I went gluten free I cried for days. It made me resentful to hear of other people going to parties and out to eat. It was horrible! I was afraid to eat anything, and lost a ton of weight because I lived on chicken breasts and veggies.

My saving grace came from my sister who was helping my niece live a gluten free lifestyle. She would give me information, updates and encouragement. I slowly realized that the more I learned about gluten and all things associated with it, the better I felt. I began writing articles with the thought of, "If I wanted to know this, maybe others do too." It became a kind of therapy for me. The more articles I researched and wrote, the more I became okay with being a member of the gluten free elite. :D

Maybe it would help to incorporate a little of your new found knowledge into your work. There is a lot of motivation to be found sharing with others.

"I cried for days. It made me resentful to hear of other people going to parties and out to eat. It was horrible! I was afraid to eat anything"

That is exactlly what i am going through at the moment. I couldnt stop crying this morning. My mom and my dad helped me this afternoon, they went out and got some gluten free food for me at "Wholefoods" i wish I could participate in shopping with them to learn about these things first hand but my energy SUCKS! I was on my back all day today. I have been doing a lot of research online but I need that experience of going out there to get the produce and products. thank you for sharing your experience with me. It makes me feel safer and better about what is happening to me.

cyoshimit Apprentice
Wait until they taste flourless chocolate cake!

:o:) cool beans! looking forward to learning all about that!

Ahorsesoul Enthusiast
cyoshimit Apprentice

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,984
    • Most Online (within 30 mins)
      7,748

    henrygreen
    Newest Member
    henrygreen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
×
×
  • Create New...