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

Just Saying Hi


KayakMom

Recommended Posts

KayakMom Newbie

I just wanted to say hi. My daughter is 4.5 years old and received her biopsy results on Friday evening this past week so we are on day 4 of her gluten free diet. We are struggling through the first shopping trips and trying to get the school on board. I am trying to remain positive and matter-of-fact with her but on the inside I am sad. Don't get me wrong- I understand that this can be managed and could have been worse but life is hard enough. As a parent I think we all wish that our kids don't have any more struggles in life than they have too.


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



Celiac.com Sponsor (A8-M):



millersinkenya Rookie

I would totally agree with you. We are just a few weeks in and I am sad for him! It is just one more thing to add to the list of life issues he will have to deal with. It is just hard. Glad you are here, though, and doing what is best for your little girl!

Roda Rising Star

In time it will get easier and will be second nature for both of you. My youngest son was 5 almost 6 when he was diagnosed. A year later he is emotionally managing well. It was easier for him, at least at home, because they were used to me being gluten free and would eat plenty of gluten free food. You may want to consider getting all first degree relatives tested(parents and siblings) since the risk goes from 1 in 133 to 1 in 22 for someone with a first degree relative diagnosed.

To keep her safe from cross contamination, you will want to either take the kitchen gluten free or have separate toaster cookware etc for her. Things I did when I was diagnosed: replaced or bought another of toaster, waffle iron, pasta strainer, cutting boards, wooden utensils, baking supplies/spices & herbs/condiments that may have gluten contamination, old metal bake ware, crock pot(old and scratched), any scratched/pitted cookware. I did keep some of my cook ware because it was not teflon coated and was in good shape. I also kept all my glass bakeware. I did not allow any baking with regular flour in the house due to it staying airborn up to 24 hours. Any baking was done gluten free. All meals together were made gluten free. At the time I was diagnosed I was the only one gluten free in the house. I did maintain a shared kitchen but with strict rules. My husband and kids had a separate area in the fridge and counter for their stuff. Now in addition to me there are two others in the house that are gluten free. My youngest son was diagnosed last year and my oldest son is on a gluten free trial(I suspect he will remain gluten free). That only leaves my husband eating gluten and he is very careful. We do share condiments, lunch meat, cheese etc but he gets what he wants first or scoops out of containers etc to avoid contamination. He did not want to purchase two of everything. He felt it was wastefull and I agreed.

Welcome and I hope your daughter is feeling better soon!

The Horticulturalist Apprentice

I just wanted to say hi. My daughter is 4.5 years old and received her biopsy results on Friday evening this past week so we are on day 4 of her gluten free diet. We are struggling through the first shopping trips and trying to get the school on board. I am trying to remain positive and matter-of-fact with her but on the inside I am sad. Don't get me wrong- I understand that this can be managed and could have been worse but life is hard enough. As a parent I think we all wish that our kids don't have any more struggles in life than they have too.

Same story here, just received biopsy results this morning for my son and he has celiac. I have been gluten free for a year so it's not too much of a challenge for me in terms of cooking, but it will require a good deal more organization on my part!

I have been in touch with the University of Chigago Celiac center, they have been so helpful and have some great resources. I have asked about getting their care package for my son, which is basically a basket of gluten-free goodies, see here: Open Original Shared Link If you are on Facebook 'like' their link here: Open Original Shared Link you can see a picture of a little girl on there getting her package.

Check out some of the gluten free blogs out there, I have found them to be an invaluable resource. Heidi has some great recipes and also some helpful info on dealing with schools, I'm sure if you contacted her she would point you to some resources she has used (you can also 'like' her page on facebook)Open Original Shared Link

I just signed up for Once a Month Mom, they have a gluten free and Dairy Free menu option and it's GREAT!! It's free, so definitely worth a look.

It IS overwhelming and takes a while to get used to the change, don't be too hard on yourself, you're doing great already!

StephanieL Enthusiast

It is hard :( I still get sad for my DS who was dx over a year ago. While I *know* it is manageable, it isn't ideal for any person. Give yourself time to be sad and know you will have moments like that pretty much forever. I think it's just part of being a parent. I wonder about dating, college (and no beer, will he be more likely to get into hard alcohol?) and finding a partner who is willing to help do everything he/she can to keep him safe? Will HE be compliant as he gets older? What about his children if he has them.

So know you will revisit this feeling. Honor them and then do what you can to overcome it (ie teaching your child how to cook which I think is the MOST IMPORTANT gift we can give these kids!)

Hugs!

domesticactivist Collaborator

Welcome! It is really hard emotionally to realize that your kid has a health problem that will affect them for their whole life. Sometimes I feel sad about it, too, and it's been about a year since we figured it out. Mostly I feel sad that we didn't get it sorted sooner (my son is 11 and had problems all along). Luckily, this problem has an all-natural, simple (but not always easy) solution! It can be overwhelming at first, but before you know it you'll have it all down pat!

The most important thing is to really empower your child to take care of her health. As your child grows she will encounter more and more situations where it is in her power to stay safe or to get 'glutened.' The more she understands about gluten and her body's reaction to it, the better. She'll need that internal knowledge and motivation to keep her safe, and the more it's in her power, the more the gluten-free diet will feel like a positive thing.

KayakMom Newbie

Same story here, just received biopsy results this morning for my son and he has celiac. I have been gluten free for a year so it's not too much of a challenge for me in terms of cooking, but it will require a good deal more organization on my part!

I have been in touch with the University of Chigago Celiac center, they have been so helpful and have some great resources. I have asked about getting their care package for my son, which is basically a basket of gluten-free goodies, see here: Open Original Shared Link If you are on Facebook 'like' their link here: Open Original Shared Link you can see a picture of a little girl on there getting her package.

Check out some of the gluten free blogs out there, I have found them to be an invaluable resource. Heidi has some great recipes and also some helpful info on dealing with schools, I'm sure if you contacted her she would point you to some resources she has used (you can also 'like' her page on facebook)Open Original Shared Link

I just signed up for Once a Month Mom, they have a gluten free and Dairy Free menu option and it's GREAT!! It's free, so definitely worth a look.

It IS overwhelming and takes a while to get used to the change, don't be too hard on yourself, you're doing great already!

Thank you for all of these tips! I called U of C for DD's basket. She will be so excited to get a "gift" in the mail. I am now totally in love with the blog and can't wait to try some of the recipes (especially for goldfish crackers)! I am hoping to be able to do the Once a Month Mom cooking once we are a bit more settle in. Maybe a good thing to attempt when I am off over the holidays. It sure would make life simpler.


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



Celiac.com Sponsor (A8-M):



The Horticulturalist Apprentice

Thank you for all of these tips! I called U of C for DD's basket. She will be so excited to get a "gift" in the mail. I am now totally in love with the blog and can't wait to try some of the recipes (especially for goldfish crackers)! I am hoping to be able to do the Once a Month Mom cooking once we are a bit more settle in. Maybe a good thing to attempt when I am off over the holidays. It sure would make life simpler.

It's a big shift in thinking and planning that's for sure!! :) My philosophy is that my son's Celiac diagnosis is infinitely preferable to a missed diagnosis and all the potential complications that can go with that.

I've sent my husband off to Sam's Club today to get a bunch of food for my once a month cooking attempt, I'd better go get organised before he gets back!

There are a ton of gluten-free blogs out there, most blogs have links to other blogs so you could spend all day looking at them. Google 'a year of slow cooking', I was reading that blog for the year before I was gluten free and hadn't noticed that it was gluten free, you'll find lots of easy family friendly meals there.

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. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      3

      Feel like I’m starting over

    2. - Kirita replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Recovery from gluten challenge

    3. - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Recovery from gluten challenge

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Brain fog

    5. - trents replied to Scatterbrain's topic in Sports and Fitness
      3

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,286
    • Most Online (within 30 mins)
      7,748

    Molberry
    Newest Member
    Molberry
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scatterbrain
      Thanks to those who have replied.  To Cristina, my symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell. To Trents, We didn’t do any of the construction but did visit the job site quite often.  While getting the old house ready we stirred up a lot of dust and I’m sure mold but haven’t been back there for over a month.
    • Kirita
      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant but also reliant on others to make her food (at school and home) but she didn’t have this problem prior to the gluten challenge when she went strictly gluten-free. It really makes sense to me that the gluten challenge inflammation hasn’t healed and I will be asking her doctors about nutritional issues. I ask for anecdotal stories because the research surrounding the gluten challenge seems to be inconsistent and inconclusive (at least what I’ve been able to find!). Thank you so much for your response!
    • Scott Adams
      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Brain fog, like other celiac disease symptoms, does improve after you to 100% gluten-free, and supplementation will also help.      
    • trents
      Were you doing any of the new home construction yourself? Drywall compounds and adhesives used in construction have been known to cause problems for some celiacs.
×
×
  • 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.