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

Newly Diagnosed And Concerned About My Kids


Mrs. M.

Recommended Posts

Mrs. M. Apprentice

I was diagnosed with celiac disease a few weeks ago. I have mild symptoms consistent with celiac, and positive lab results. I am concerned about the risk to my kids, which I understand is empirically 10%. My oldest daughter, who is 8, just got tested. Her lab results (TTG IgA and IgG) were normal. This is the only testing recommended by her pediatrician. I am pushing for more, but want to get advice from this group so I can be better informed when talking to her doctor. I am concerned about her because she has frequent stomach pain, and an itchy rash on her knees and elbows. I know these things can be unrelated but in the context of my diagnosis they make me concerned. Has anyone had a similar situation of being diagnosed and trying to figure out whether your kids have it? I don't know whether to just be happy that for now they seem ok, or trying to push for more evaluation. Should I have her levels checked again in a few years? Have a dermatologist test her rash to see whether it is DH? Do genetic testing? Do nothing? If anyone has advice for me, please share. Thank you!


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



Celiac.com Sponsor (A8-M):



Newbee Contributor

My brother and I both have celiac disease but neither of my parents tested positive for it. I have no children but my brother has a daughter who has had stomach pains for awhile. I was concerned she might have the disease but she did not test positive on the blood test. For her they think it is just stress. But of course you know you can have the disease and still test negative on the blood test. I'll bug my brother to have her tested in a few years, but I know he will not put her through something like an endoscopy now. That's a hard decision to make. My brother is very laid back about having the disease but I am not. It is hard to know what the right thing is to do. Testing the rash seems like a less invasive test than the biopsy. You could also try putting her on a gluten free diet anyway and see if it gets rid of the symptoms. Some people are just gluten intolerant. It might help.

Avalon451 Apprentice

My daughter was the one who was diagnosed first, because of the itchy rash on her elbows and knees. The blood tests are notoriously inaccurate for children. I would ask for a referral to a dermatologist and have the rash looked at. It may be awhile before you can get in, so many derms are booked way out, but don't have her go gluten free before then, so the testing will be more accurate. The derm will need to test right next to a fresh breakout area. The skin biopsy is so much less invasive than the endoscopy, and anyway, your regular doc is unlikely to refer you to a gastroenterologist since her blood was negative.

After my oldest was diagnosed, we had blood tests on the younger two, and they were sorta positive and really positive, but we decided not to get them scoped.

Good luck!

Mrs. M. Apprentice

Thank you for the advice. This fits with what I am thinking.

My daughter was the one who was diagnosed first, because of the itchy rash on her elbows and knees. The blood tests are notoriously inaccurate for children. I would ask for a referral to a dermatologist and have the rash looked at. It may be awhile before you can get in, so many derms are booked way out, but don't have her go gluten free before then, so the testing will be more accurate. The derm will need to test right next to a fresh breakout area. The skin biopsy is so much less invasive than the endoscopy, and anyway, your regular doc is unlikely to refer you to a gastroenterologist since her blood was negative.

After my oldest was diagnosed, we had blood tests on the younger two, and they were sorta positive and really positive, but we decided not to get them scoped.

Good luck!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,705
    • Most Online (within 30 mins)
      7,748

    Movehms1
    Newest Member
    Movehms1
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • PlanetJanet
      After looking at Google images, the spleen is on the upper left abdomen, too!  An organ, part of the lymphatic system for immune function.  A filter.  Wonder how this relates to gluten sensitivity?
    • PlanetJanet
      Hey, mistake in my post,  pancreas TAIL is on the left side.  Head is middle back of belly,
    • PlanetJanet
      Hello, everyone, This upper left side pain is interesting to me.  I have this same pain almost all the time.  Started 2009 when I got diverticulitis for the first time.  Then had left ovarian cyst removed and a diagnosis of endometriosis all over inside.  Been attempting gluten-free since 2018.  It's not perfect, but still have that left sided pain.  Like up under the rib cage.  I believe the pancreas head is on that side, so I often wonder if I have a tumor or something there.  But it could also be an endometriosis adhesion in my belly.  I never got scraped.
    • DMCeliac
      One of my biggest issues is when a brand chooses to label one item gluten free, but not another. Why is Hunt's diced tomatoes labeled gluten free, but not the paste or sauce? I would have assumed they were all gluten-free, but why label one and not the others? It makes me suspicious.   
    • Scott Adams
      Most of these items would be naturally gluten-free, with very little chance of cross contamination, thus they don't typically label them as gluten-free. If wheat is a potential allergen large companies disclose this in the ingredients as "Allergens: wheat." 
×
×
  • Create New...