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

Introducing Myself

THernandez

Recommended Posts

THernandez Newbie
THernandez
Posted

Hi! I'm new to the forums here, but not new to the site. I've used the resources here for the past 3-1/2 years. Well, almost 4 now. I have three kids, a daughter, aged 10, and twin boys aged 7. All have been diagnosed with celiac disease.

One of my sons was 3 when he began having symptoms. Subtle at first, occasional vomiting, stomach aches, etc. The vomiting became more common, he lost considerable weight, to the point that he was just skin and bones. At the age of 3-1/2, he weighed 25 pounds, then 24, then 23, and finally 22.5 when we finally got our diagnosis.

Our pediatrician ran test after test and could find nothing wrong with him and even told me that he was now at least in a healthy weight range whereas before, he'd been trending towards being heavy. He was a toddler! Give me a break, all toddlers are a bit chubby. I found a new pediatrician but did my own research. The first time I met with her, I asked if it could be celiac and she agreed to test him. Because of the genetic component, she recommended we have his identical twin brother tested too, who I didn't even realize had symptoms because they were mild by comparison. when both tested positive, she recommended my daughter be tested too and that also came back positive.

So, three kids with celiac and neither my husband nor I have it and to our knowledge, no one in either of our families does either.

While we've been dealing with this a lot longer than it looks like some of you have, we really don't know that much about it. We've been unimpressed with the medical professionals we've dealt with here locally. I mean, their ped has been great, but she clearly doesn't really know much about it and the experts we met with at Children's Hospital were so unhelpful, I never went back.

I know all three are doing really well now, but I also feel like we need to learn more about the disease and long-term issues to be made aware of.

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

Celiac.com Sponsor (A8-M):


Dixiebell Contributor
Dixiebell
Posted

Hi and Welcome! I have learned a lot of valuable information here. Have all of your immediate family members been tested for celiac? I wish my family would all get tested, they are just so stubborn. Have you tried a R.O.C.K group? (raising our celiac kids) Just fire away with questions, someone will know the answer.

THernandez Newbie
THernandez
Posted
  • Author

Hi and Welcome! I have learned a lot of valuable information here. Have all of your immediate family members been tested for celiac? I wish my family would all get tested, they are just so stubborn. Have you tried a R.O.C.K group? (raising our celiac kids) Just fire away with questions, someone will know the answer.

Thanks for the welcome! I feel like I should have been posting here for years; I'd be way ahead of where I am if I had.

No, I can't get them to get tested. It's driving me nuts. Of course they think I'm the Celiac Tyrant because anytime anyone even has a slight symptom that my be related to celiac, I dive into that. They all just roll their eyes at me.

I have not tried a ROCK group. Are they like local support groups or an online thing? Might be cool to meet in person. When my twins were little, I'm not sure I would have made it without the Mothers of Twins Club,

psawyer Proficient
psawyer
Posted

Click here to read an article about ROCK.

After the article there is a list of local chapters. The contact info is probably out of date due to the age of the article.

THernandez Newbie
THernandez
Posted
  • Author

Click here to read an article about ROCK.

After the article there is a list of local chapters. The contact info is probably out of date due to the age of the article.

Thanks!

THernandez Newbie
THernandez
Posted
  • Author

I checked it out and it turns out the founder of ROCK lives in my area. That bodes well for an active local chapter!

Archived

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

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


  • Member Statistics

    • Total Members
      131,371
    • Most Online (within 30 mins)
      7,748
    Carrie114
    Newest Member
    Carrie114
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Zuma888
      Gluten challenge and Hashimoto's Thyroiditis

      By Zuma888 · Posted

      I didn't ask a doctor about this actually. I did ask several doctors a long time ago and they told me gluten has nothing to do with hashimoto's. One of them told me to do a gluten challenge to test for celiac, but at the time I was in graduate school so couldn't afford to be even more ill than I was. If you have the symptoms, I really don't advise you to do a gluten challenge. It messed me up mentally and physically for months. At the same time, I benefitted from doing the challenge in the sense that it convinced me that all my symptoms were truly from gluten - even stuff like insomnia! So now I am terrified to eat gluten, whereas before I would have a little once in a while and not notice anything dramatic. 
    • Winnie-Ther-Pooh
      Gluten challenge and Hashimoto's Thyroiditis

      By Winnie-Ther-Pooh · Posted

      I am in a similar situation where I can't feasibly do a gluten challenge but have all the symptoms and I have 2 celiac genes. I'm curious if your doctor advised you to eat as if you had a diagnosis or if they were more dismissive about it. 
    • Zuma888
      Gluten challenge and Hashimoto's Thyroiditis

      By Zuma888 · Posted

      Negative, although I had most of the symptoms of celiac disease. I now eat as if I had a diagnosis.
    • Winnie-Ther-Pooh
      Gluten challenge and Hashimoto's Thyroiditis

      By Winnie-Ther-Pooh · Posted

      What were the results of the test?
    • Scott Adams
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
×
×
  • Create New...