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

Mourning My Loss?

ashleyld

By ashleyld
in Coping with Celiac Disease

Recommended Posts

ashleyld Rookie
ashleyld
Posted

Is it normal to mourn my loss of freedom? I guess thats what it is. I am really sad and have been since i got my daughters results. I got really emotional cleaning out our cabinets. Thinking about all the things that need to be replaced. 

I also have the anxiety waiting for My and the rest of my families results. 

anyone else feel like this just after a diagnosis?

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

Celiac.com Sponsor (A8-M):


BlessedMommy Rising Star
BlessedMommy
Posted

Congratulations on finally getting a diagnosis! How great to finally know what's going on and have it be something that is treatable with diet.

 

In the meantime, do know that it's okay to grieve and mourn the loss of spontaneity. I've been gluten free for quite awhile now and I still have days where I feel kind of sad at the loss of spontaneity and freedom. It's a huge change to just go from eating whatever to all of a sudden having to analyze every single thing that you eat. Do know that it gets better and easier the longer you stay at it, though, as you grow to know which products are safe and learn more safe recipes.

 

It's hard also to get rid of things in the kitchen, but I was happy to be able to get new shiny kitchen things instead of the old scratched up ones that I was using and the peace of mind of having a gluten free kitchen is worth it.

 

As far as replacement cost, I went through and discontinued using the old things right away but I didn't replace everything all at once. I did without some of them and gradually replaced things one or two at a time (I also told people I wanted kitchen things for my birthday) until my kitchen was mostly back where it needed to be, equipment wise. That eased some of the financial pressure of having to buy so many new things.

sweetsailing Apprentice
sweetsailing
Posted

Yes, I was mourning the loss of foods that I loved.  At first, I tried very hard to replicate in someway all the things I loved and make them gluten free.  Of course, this approach only frustrated me more since the gluten free replication did not in anyway satisfy the craving for the foods that I loved and remembered. 

 

Then I started to think about it differently.  I started to focus on naturally gluten free foods that tasted great and expand the foods that I ate.  Through this process I developed new favorite foods and dishes that tasted fantastic and I stopped trying to replicate my old favorite foods.  I enjoyed and embraced the process of pouring over cookbooks and looking for recipes online of new foods to try and experiment with.  In our house it became somewhat of a new adventure, "what are we going to try today" and with every new dish we tried, we all voted.  Did we like it?  Would we make it again?  Was it a train wreck?  If we liked it and would make it again, it made it's way onto a recipe card in my personal cookbook. 

 

It has been six months of being gluten free and what I eat and the recipes I make bears little resemblance to what I ate a year ago.  There are still some family favorites that were gluten free to begin with and those didn't need to change.  But we now have lots of new favorites to choose from. 

 

There are some surprises along the way.  A year ago if someone told me that my family's favorite meal contained brussel sprouts and my kids would actually "beg" me to make a meal with brussel sprouts, I would have laughed in your face.  Yes, now I and my family eat brussel sprouts and like them. 

ashleyld Rookie
ashleyld
Posted
  • Author

thanks! I guess i knew it was normal.. ;) so far the kids really love chex! LOL and we have been gluten-free this week. (not much different from our typical diet) 

Its just really hard telling a 3 year old she cant have her favorite cookies anymore because they will hurt her belly. I know it will get better overtime, it just hurts my heart for her :(

BlessedMommy Rising Star
BlessedMommy
Posted

If you get set up with gluten free flour, you can make her some really great cookies.

 

Enjoy Life chocolate chips are gluten free and are produced in a gluten free facility.

ashleyld Rookie
ashleyld
Posted
  • Author

Thank you! I have been on pinterest a lot finding gluten-free meals and treats. they all look amazing.

mamaw Community Regular
mamaw
Posted

The loss  of  gluten  in our lives  is  very similar  to loosing  a loved  one.. We  go through  all the  stages  of  loss .. From  what  your  mother  taught  you as  a young  child  on  what & how to  eat  has  now  become  off  limits...I  always  felt  like  part  of  me  got  lost  when going  gluten-free....  you  know "wheat  is  the staff of      life" well boy  is  that  so  wrong! but  that's  is  what  I was  taught so  I  think  a  part  of  my being  has  gone forever.... so  with that  being  said  ,, we  go  through all  the  emotional  feelings  of  anger, loss,  pain,  denial . bargaining  & finally  great  health.....

But  what  comes  with  all that emotion  is  a healthy happy long  life .... there is light at  the end of the tunnel.....

 

Look  here  under  recipes  , we have  some  of the best  cooks/bakers  right  here.....

 

For  your  children  try to keep  them  excited  about all the new  things  they will be able  to  make.... There  are plenty  of  ways  to make  them  &  the  new  lifestyle   interesting......  Our  kid  was 2 1/2  when  going  gluten-free  the other  was  7-8  both  are in high  school now  ..... we  matched  everything  the  school  served  along  with  all the  parties... Kids  never  felt deprived  or  left  out...

It all takes  time   but  you to  will get  to a better  place....

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

Celiac.com Sponsor (A8-M):


ashleyld Rookie
ashleyld
Posted
  • Author

The loss  of  gluten  in our lives  is  very similar  to loosing  a loved  one.. We  go through  all the  stages  of  loss .. From  what  your  mother  taught  you as  a young  child  on  what & how to  eat  has  now  become  off  limits...I  always  felt  like  part  of  me  got  lost  when going  gluten-free....  you  know "wheat  is  the staff of      life" well boy  is  that  so  wrong! but  that's  is  what  I was  taught so  I  think  a  part  of  my being  has  gone forever.... so  with that  being  said  ,, we  go  through all  the  emotional  feelings  of  anger, loss,  pain,  denial . bargaining  & finally  great  health.....

But  what  comes  with  all that emotion  is  a healthy happy long  life .... there is light at  the end of the tunnel.....

 

Look  here  under  recipes  , we have  some  of the best  cooks/bakers  right  here.....

 

For  your  children  try to keep  them  excited  about all the new  things  they will be able  to  make.... There  are plenty  of  ways  to make  them  &  the  new  lifestyle   interesting......  Our  kid  was 2 1/2  when  going  gluten-free  the other  was  7-8  both  are in high  school now  ..... we  matched  everything  the  school  served  along  with  all the  parties... Kids  never  felt deprived  or  left  out...

It all takes  time   but  you to  will get  to a better  place....

Thank you so much for your response <3

shadowicewolf Proficient
shadowicewolf
Posted

Is it normal to mourn my loss of freedom? I guess thats what it is. I am really sad and have been since i got my daughters results. I got really emotional cleaning out our cabinets. Thinking about all the things that need to be replaced. 

I also have the anxiety waiting for My and the rest of my families results. 

anyone else feel like this just after a diagnosis?

Very normal.

 

However, I will say, three years after switching to a gluten free diet, that I miss tomatoes more than i do anything with gluten.

ashleyld Rookie
ashleyld
Posted
  • Author

I eat lots of tomatoes? Why cant you have tomatoes?

BlessedMommy Rising Star
BlessedMommy
Posted

Don't worry, tomatoes are fine for a gluten free diet. :)

 

But some people have problems with nightshades as well as gluten. (tomatoes are part of the nightshade family)

shadowicewolf Proficient
shadowicewolf
Posted

I eat lots of tomatoes? Why cant you have tomatoes?

I'm allergic to them. :ph34r:

ashleyld Rookie
ashleyld
Posted
  • Author

Don't worry, tomatoes are fine for a gluten free diet. :)

 

But some people have problems with nightshades as well as gluten. (tomatoes are part of the nightshade family)

 

OOOHHH okay! My DD must have that problem. She will not eat a tomato ever. she steers clear.

I'm allergic to them. :ph34r:

Aww thats too bad! My niece is allergic to them as well

Telith Newbie
Telith
Posted

I was vegetarian when I found out I inherited Celiacs from my dad, and because of the supplies locally and my own schedule I had to remove Gluten and add back in meat.  It was an emotional time. I may or may not have started crying in the grocery store's candy aisle because I just couldn't remember what was safe and what wasn't and all I wanted was a snack for movie night....

 

It's a stressful transition, but it gets better first as you heal, then as it becomes a reflex and you gain confidence in your abilities.  I still haven't made a truly perfect crab rangoon, but my boyfriend is regularly jealous of my ability to create asian cuisine and demands to know the secrets of sushi making.  Starting with naturally gluten free food and meals helped me more than searching for that one replacement for my favorite gluten filled food.

I also swear by my rice cooker, and ate a lot of rice porridge for the first six months as I relearned how to shop and cook for myself.

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted

Its just really hard telling a 3 year old she cant have her favorite cookies anymore because they will hurt her belly. I know it will get better overtime, it just hurts my heart for her :(

 

I can completely relate to how you feel, and your three year old too. It's a painful adjustment for any age. She's so young though, after she adjusts, it may seem like just the way things are. She won't have many years of forming habits to combat. I'm not downplaying the difficulty of the adjustment stage at all, but her age could really work in her favor in the long run!

ashleyld Rookie
ashleyld
Posted
  • Author

Crying again. My middle daughter just had a positive for celiac.  :( 

We will be better. I know. this is so hard!

nvsmom Community Regular
nvsmom
Posted

((HUGS))  :(

 

Yeah. It was a bit tough at first. I splurged on gluten-free treat foods for a while just to make myself feel better, like I wasn't missing anything.

 

I still do miss the convenience of gluten-free foods for my children.  Like many kids, they are picky eaters so we rarely ever eat out because they would not be happy with a salad, or a chunk of meat with veggies.  I used to get take out pizza once a week on busy nights, and not have to worry about packing snacks if we are out (we could simply order fries or pizza somewhere) and I miss that lack of planning, but we do all feel much better now... a few months into the gluten-free diet and the trade-off will be more satisfying.

 

Best wishes.

luvrdeo Apprentice
luvrdeo
Posted

What a bummer for you!  It's been almost 2 years for me, and the convenience factor is probably what I miss most.  I also have dreams of eating things I shouldn't have...a normal sandwich, a slice of pizza, pretzels - I wake up mortified, because every time I take a bite of whatever it is that has gluten, I start spitting it out and losing it because I know what it does to me.  It's funny how food can take over the way it does!  I went to strick paleo trying to control my gut issues that still exist, and I've found a lot of good ways to not feel so deprived :)  It does get easier!  Best of luck to you and your family...we all feel for you!

mamaw Community Regular
mamaw
Posted

So  will now the  whole family be gluten free? Honestly  for us  it made  it  easier.. NOt  that  we  wanted  any of the kids  to  have  any illness.. we  all want  the perfect  healthy  child...Convenience  is  what  we all miss  no matter how long  we've  had  celiac...

It  does  & will get  better... throw  yourself  into  it  &  you to  will get  to a better  place....

 I hope  you enjoy  baking  because  it is  so much less expensive    &  get  those  kids  involved too.. At  3  ours  could  read a labels & look  for words.  wheat, rye, barley,,,,, they  felt  so good   like  a big  person.....hard to believe  but  it  can be  fun  with kids....

africanqueen99 Contributor
africanqueen99
Posted

Crying again. My middle daughter just had a positive for celiac.  :( 

We will be better. I know. this is so hard!

I will say that I was overwhelmed when my youngest was DX, but it felt better when the oldest joined her with a DX.  Now they weren't alone.  And the oldest couldn't be pissed that the baby was forcing all this change in the house.  It worked really well for us.  And now my middle kid will automatically ask if any food has "gwooten" in it to make sure it won't hurt his sisters' bellies.

 

It gets better.  I promise.  Get your cries out now and then power up.  Once you get your bearings this process just runs itself.

 

I will say that I still miss fast food runs when we're going from activity to activity.  McDonalds food tastes horrible, but the convenience was so awesome!  But you know what makes up for that ability to eat junky food?  Not hearing my baby scream in pain all night...and my oldest curled over in pain for the millionth time.

 

You're going to rock this!  Just wait and see how far you'll be in six months. :)

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted

So sorry you're having more difficult news on top of what you've already learned :( I remember feeling relieved right at first to know what was wrong, then pretty quickly that changed into feeling completely overwhelmed with the changes I would be facing. It can really hit you like a freight train.

 

The practical part of making changes, all the new information, and the loss of foods you've come to count on is so hard to face. It is a mourning period just like anyone would experience after any kind of loss.

 

I just have myself to deal with, and I can only imagine how that would be compounded with your kids needs to think of as well. I really feel for you, it must seem like too much all at once.

 

It does get so much easier as you figure out the solutions that will work for you. I doesn't seem like it at first, but it really does. You'll get the routine down. There is so much knowledge and experience on this site with questions that come up, and a lot of support too, so you don't have to go through it alone.

 

Just take one day at a time. You will get there! :)

Archived

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

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


  • Member Statistics

    • Total Members
      127,412
    • Most Online (within 30 mins)
      7,748
    Leslie Smith
    Newest Member
    Leslie Smith
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Waiting on Blood test results…

      By Scott Adams · Posted

      It looks like they will now order the Tissue Transglutaminase IgA Antibody test, but verify this with your doctor.
    • trents
      Reaction to gluten or gastro bug?

      By trents · Posted

      I think you know enough to conclude that your son either has celiac disease or NCGS (Non Celiac Gluten Sensitivity). As soon as you removed gluten from his diet his stools firmed up. It is also very common for celiacs to be intolerant of dairy and soy, so that is another piece of corroborating evidence. If I were you, I would consider getting your sone genetically tested for the genes we know are associated with celiac disease. There are two main genes looked for, HLADQ2 and HLADQ8. Having either or both provides the potential for developing celiac disease. But since about 40% of the general population have one or both of the genes it cannot be used to diagnose celiac disease. But it can be used as a rule out measure if both are absent, thus pointing one in the direction of NCGS. If one or both are present, there is the possibility of either celiac or NCGS. NCGS is 10x more common than celiac disease by the way. The two conditions share many common symptoms. The difference being that NCGS does not damage the lining of the small bowel as does celiac disease. Celiac disease is actually an autoimmune disorder. At any rate, both conditions require a gluten free diet so, at the end of the day, that is the antidote for both. Some experts feel that NCGS can be a precursor to the development of celiac disease.  I would also make mention of the fact that once gluten is removed from the diet and then added back in for the gluten challenge, reactions are often more violent as all tolerance has been lost.
    • cristiana
      Reaction to gluten or gastro bug?

      By cristiana · Posted

      Hello @Beck1430 and welcome to the Forum. I am sorry your little boy is going through this. Your question is an interesting one.  I would say the majority of posts I have read since joining this forum speak of a fairly quick reaction, and that has been my own experience.  The only major gluten hit I've had in more recent times resulted in chills, dizziness and vomiting about 2-3 hours after eating gluten.  It was truly horrible.  The fact that I vomited was new for me - I didn't get diarrhea which had been my classic reaction in the past.  It was as if in going totally gluten free my body has decided to react more violently to gluten, and quite differently.  Reactions can change over time - the fact that your son is reacting differently doesn't necessarily mean that gluten isn't the culprit. Anyway,  this study is interesting in that it states that it is possible to react 12 hours later. https://www.schaer.com/en-us/a/how-long-after-eating-gluten-do-symptoms-start#:~:text=A survey published in Alimentary,by 12 hours or more. I am afraid the only way you will probably know for sure is to repeat the challenge again, but I can completely understand your reluctance to do that.  I wonder if I can ask a couple of questions: Regarding the rash - has that also subsided since giving up gluten?   There are quite a lot of photos of dermatitis herpetiformis to see online, I wonder if you think what your son had/has was similar? Also, do you have coeliac disease in the family?  It is inherited and if you have others in the family, that could point more strongly to your son having coeliac disease. Cristiana
    • Beck1430
      Reaction to gluten or gastro bug?

      By Beck1430 · Posted

      Hi there, I'm looking for some advice for my 2 year old. After he turned one he started eating more foods like pasta and breadsticks and our supermarket finally started to stock a soy free bread (he has an intolerance to dairy and soy) so he started eating bread for the first time.  He began having foul, loose nappies, which I assumed must be teething, but this went on and on for a couple of months. Coupled with that, he started having patches of red scaly skin, a little bit like eczema but more widespread. He was also very tired and quite miserable. Given that it all coincided with him starting to eat a lot more gluten, his dietician recommended I eliminate gluten to see what happened. His poos immediately changed back to normal and were finally formed, and he’s been off gluten since last summer.   Fast forward 6 months and we did a wheat challenge yesterday, giving him a small breadstick at about 11am. He seemed ok through the day but 11pm he woke up vomiting, and was sick 3 more times over the course of 90 minutes and was writhing in pain on the floor crying about “poo” which never came, and today he has done a normal poo.  My two questions are: Is it possible that this was a reaction to the gluten if it came 12 hours after ingestion? Or is that too long to cause vomiting? I wonder if it’s more likely an unrelated bug but can’t work out where from as we’ve had a quiet week. Would there not be loose stools too if it was a reaction to gluten? Before going gluten-free, this was his main symptom!   If it could be the gluten that caused this, where do we stand with ever testing for coeliac? Now that I know more about the testing I don’t know why his dietician didn’t recommend we do that before removing it from his diet before. Seems cruel to make him ill for the sake of a test. Grateful for any pointers or advice. Thank you!   
    • ChrisSeth
      Waiting on Blood test results…

      By ChrisSeth · Posted

      Okay thanks Scott. So based on my results will they order more tests to be done? Kind of confused.
×
×
  • Create New...