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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,912
    • Most Online (within 30 mins)
      7,748
    westman3d
    Newest Member
    westman3d
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.