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

Having A Weak Moment. :(


dandelionmom

Recommended Posts

dandelionmom Enthusiast

This Celiac diet is so hard. I'm killing myself trying to find my daughter foods she'll like and that are still nutritious and gluten-free and half the time she turns her nose up at everything and eats a cheese stick.

It seems I can't be careful enough because this weekend while we were out of town, she somehow got gluten even though we were so cautious. Then today, she was feeling great but her sister (who should know better but just kind of lost her head for a minute while I was feeding the baby) gave her some goldfish crackers. So now I'm expecting her to be sick for most of tomorrow (was already gassy and irritable before bed) which is my husband's 30th birthday so there goes our fun plans for the day. Yes, I threw away the crackers but they are Kate's favorite snack so it is going to be very hard for her.

All this plus the fact that Julia cried about not having wedding cake on Saturday (she was the flowergirl at the wedding) even though she had gluten-free cupcakes and M&Ms.

In addition to all that, I had to nearly smack food out of multiple hands as they offered her gluten-full foods all day Saturday.

I want to take a sharpie marker and write "DON'T FEED ME!" on her head.

Thanks for listening to me vent. I'm mostly heartbroken about how sick she's going to feel tomorrow and how much this has changed her life.


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



Celiac.com Sponsor (A8-M):



JennyC Enthusiast

I'm sorry you and your family have been having a bad time. :( It's so hard to not be able to give your kids food. All you can do is try your best. It sounds like you have done a good job of being prepared, but sometimes there are just going to be hurt feelings. Maybe freeze the cupcake and let your daughter help frost and decorate it the morning of the event. Sorry I could not be of more help.

missy'smom Collaborator

It's hard to adjust to new foods. This past week I've been going through a phase where I don't feel like eating anything we have and I feel a bit like a fussy child. Sometimes these phases come from an emotional place and sometimes physical. The things I have eaten this week aren't exactly the most nutritious but I've been at this long enough to just accept it and know it'll pass and I know that in the grand scheme of things I generally eat healthy. If I don't feel like eating at all, eventually I'll get really hungry and eat. I still take my vitamins religiously though.

buffettbride Enthusiast

Is there some what you can include her in the making of the foods or maybe present it in a way that seems more exciting (i.e. Laptop Lunchbox, bento, or the like?). Sounds like you have your hands pretty full and I know there are days I just want to feed my DD Dots and M&Ms and Fritos because it's easy. Some days I wish I could just feed everyone a cheeseburger from McDonald's because it's easy and other days I want to curse the world because they keep putting food in my DDs face.

No matter how hard we try, a gluten-free cupcake will never compare to the social significance of wedding cake at a special event, or stuffing at Thanksgiving, or a Milky Way at Halloween.

I think I read somewhere around here that a mom cuts up fruit and lets the kids eat it with a toothpick because it's more fun than using silverware and seems more appealing than the same 'ol same 'ol.

That's all I got. Hang in there.

gfpaperdoll Rookie

Oh, I am so sorry that you are going thru a rough patch.

You never know what is going to trigger a child. Did you eat any of the wedding cake? Maybe next time if you two could have your special treat.... Kids just want to be like the ones they idolize, their mom & the beautiful princess bride...

If this type situation ever arose again, (or for others reading this post) maybe decorate 4 cupcakes put together like a little white wedding cake - heck even get a "topper" for it. You could also decorate a cupcake & put it in a special little white box (I think you can get these at Micheal's) & decorate the outside of the box with stickers & present it to the bride or to the bride's mom for a little treat for her later on... ;)

Cheri A Contributor

((hugs)) I hope that your dd is feeling better today. I have felt that way many times over the years.

How old is your dd? Mine is 8 years old and has multiple food allergies. Now that she is older, I have been asking HER what she wants for a treat replacment. Sometimes she picks something "easy" for me. Sometimes I make something for her.

Juliet Newbie

I know it's hard right now, and events like this do NOT make it easier, but I promise you, it gets better. You're still at the beginning phase where you and she are still mourning about how things used to be. She's also still learning herself that she can't just eat whatever is handed to her, and when she sees a treat of any kind, sweet or savory, it's hard for her to understand she can't have it. But just like you are learning about this, so is she. She'll soon begin to understand that she shouldn't eat everything that is handed to her, in fact she probably shouldn't eat anything offered to her if it isn't from you or any her other primary caregivers. When my son was diagnosed at 2 and 2 months (now 3 years 10 months), it was extremely difficult for at least the first 6 months. It only took about 2 months for him to know not to eat food given to him by anyone other than his parents or babysitter, but it took a lot longer for him to realize not to even touch the goldfish cracker on the ground and put it in the trash. He's a thumbsucker, too, so he'd pick up that cracker and then suck his thumb. It was difficult and frustrating. And then there were the mistakes that I would make, like when I read the ingredients list of a piece of candy 3 times before giving it to him, then re-read it again just after he ate it and find "malt extract." I had to leave that person's house immediately so that I could go cry in the car. And, yes, the next day was not fun either. But the last day where I needed to cry from frustration was several months ago, and although cross contamination is sometimes still an issue since I let him play with other kids, he's generally in good health. Looking at him, you'd never know he had any health issues at all - he's extremely tall, muscular, and friendly (when not glutened - otherwise insane wild child). And he completely understands he needs to eat gluten free, and he doesn't even get upset if other kids around him are eating gluten cake or ice cream cones. This is a real change from a year ago.

Your experience will be different, but remember - if you got through the first 4 months of your first child's life, what with the extreme lack of sleep, loss of spontaneity, hormones, and changing of your own personal identity and your relationship with your husband, you will get through this, too ;) And know all of us understand your pain and completely empathize - we've all been there.


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



Celiac.com Sponsor (A8-M):



Kibbie Contributor
This Celiac diet is so hard. I'm killing myself trying to find my daughter foods she'll like and that are still nutritious and gluten-free and half the time she turns her nose up at everything and eats a cheese stick.

It seems I can't be careful enough because this weekend while we were out of town, she somehow got gluten even though we were so cautious. Then today, she was feeling great but her sister (who should know better but just kind of lost her head for a minute while I was feeding the baby) gave her some goldfish crackers. So now I'm expecting her to be sick for most of tomorrow (was already gassy and irritable before bed) which is my husband's 30th birthday so there goes our fun plans for the day. Yes, I threw away the crackers but they are Kate's favorite snack so it is going to be very hard for her.

All this plus the fact that Julia cried about not having wedding cake on Saturday (she was the flowergirl at the wedding) even though she had gluten-free cupcakes and M&Ms.

In addition to all that, I had to nearly smack food out of multiple hands as they offered her gluten-full foods all day Saturday.

I want to take a sharpie marker and write "DON'T FEED ME!" on her head.

Thanks for listening to me vent. I'm mostly heartbroken about how sick she's going to feel tomorrow and how much this has changed her life.

One of the best pieces of advice I was given was "Don't even thing about nutrition untill you find food your daughter likes, you can ease into the nutrition later" (This was advice from my GI's dietitian.

I took it to heart and we had a Pamela's gluten free cake the weekend after my Daughters Biopsy to "Celebrate her not being sick anymore" With in a week or two I had found snacks she would eat and special treats too... we were back to the nutritious eaters again in less than a month!

ShayBraMom Apprentice

My best friends son who's seven is deadly allergic to even trace ammounts of peanuts!!! Needless to say that like with wheat it is very hard on the kids because no B-day cake is usally absolute peanutfree, most paretns don't even know what's in it because htey had it made some place! He has the same problem, even after living for so long with the diagnosis, he always gets kind of sad. If she does find something she can eat and like maybe she can choose herself what she'll have instead fo what they have at the party!

kbtoyssni Contributor
One of the best pieces of advice I was given was "Don't even thing about nutrition untill you find food your daughter likes, you can ease into the nutrition later" (This was advice from my GI's dietitian.

This was my philosophy, too. The first week I ate A LOT of tortilla chips with cheese because I was hungry and didn't know what else to eat. Even though it wasn't the best nutrition-wise, it was still miles better for my body that my previous gluten-eating habits. As the weeks went by and I started figuring out brands, my diet got healthier.

dandelionmom Enthusiast

Thanks for your support and advice (and for "listening" to me vent!). Things are looking up again. We've found a few other gluten-free products that Julia likes which has really helped make meal times easier. And some more of our family members are starting to realize how serious this diet is. We had the baby's first birthday party this weekend and everyone (even the in-laws!) were very good. :)

I'm so glad this board is here to give me a little reality check! I'm trying really hard to focus on "safe foods" instead of worrying so much about "healthy foods." You're all so right, there's a time and place to worry about the nutrition aspect!

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. - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

    2. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    3. - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    4. - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

    5. - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

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

    • Total Members
      132,956
    • Most Online (within 30 mins)
      7,748

    Srowton
    Newest Member
    Srowton
    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)

  • Upcoming Events

  • Posts

    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • 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.