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
KayakMom
Posted

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
millersinkenya
Posted

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
Roda
Posted

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
The Horticulturalist
Posted

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
StephanieL
Posted

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
domesticactivist
Posted

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
KayakMom
Posted
  • Author

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
The Horticulturalist
Posted

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.

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,333
    • Most Online (within 30 mins)
      7,748
    Donna Chem
    Newest Member
    Donna Chem
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.