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

Kids, Doctors, Insurance


lonewolf

Recommended Posts

lonewolf Collaborator

I have multiple food allergies and have just figured out that I have to go completely gluten-free, rather than "gluten light" as someone else put it. I have spent a ton of time and money trying to get my health back (pretty successfully) and have made sure my kids have eaten "healthy" food, but not gluten-free. Now I'm concerned about all of them. I want to have them all tested, but what do I say to a doctor without him/her thinking I'm a hypochondriac? And how to make sure the insurance pays for it all? Our insurance only covers doctor visits and tests if the child has a specific problem to be checked out. And there's the problem of non-cooperation with a couple of the kids. I wish I had done this when they were little!

I have 2 boys and 2 girls. My oldest (14 yo girl) is terrified of needles and says that she'll go gluten-free for a week to see if anything happens. She is healthy, but has horrible PMS and debilitating cramps 1-2 days every month. There are a few other minor issues with her and she doesn't tolerate dairy or eggs well. My 12 year old daughter is very fiesty. She won't go gluten free unless she has a test to prove she needs to. She's good about eating my gluten-free food at home, but would cheat anywhere else. She has a chronic stuffy nose and wild mood swings, but no other apparent health problems. My 10 year old son is allergic to milk, is a tiny bit overweight, can't stop bed-wetting and complains about stomach aches a lot. I'm most concerned about him. My youngest is adopted, but has dark circles under his eyes (actually, we all do, except my husband) and really bumpy, rough skin. I wouldn't leave him out of the testing.

Any suggestions on how to get a doctor to order tests? I'm interested in the gene test for myself, since I'm not going back to gluten anyway. Has your insurance paid for all this testing? And, any suggestions on how to convince a strong-willed 12 year old that mom isn't crazy, just trying to take care of her?

Thanks,

Liz


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



Celiac.com Sponsor (A8-M):



taweavmo3 Enthusiast

I really feel for you, that's a tough situation. Have you been dx'd with celiac, or gluten intolerance? I would approach the pediatrician with the fact that there is a family history of this, and the current literature states that all 1st degree relatives need to be tested. Bring some paperwork in if you have to...and if the doc sees how prepared you are, that may help your case. Be pushy if you have to, sometimes you just can't worry about what the doctors are going to think about you. If they treat you in a demeaning way, find another doc. You are only looking out for the best interest of your children, and trying to save them from years of possible health problems. Some docs will not test for celiac unless the patient is knocking on death's door (sometimes not even then!), and nothing is going to change their mind. Find a doc who takes your concerns seriously, and looks at you as a partner in your child's health. I've always liked nurse practitioners myself, I have found them to be more open minded and willing to really listen to me. But, that's just my experience of course.

I wish I had some advice on getting your kids to stick to the gluten-free diet. It's very easy with my 3 year old, since she doesn't know any better. But my 6 year old, who's tests are still pending, will be a tough sell. He has developed a disdain for all things gluten free. I think he'd rather have the tummy aches and terrible rash, than eat gluten-free food! He eats totally gluten-free at home, but buys his lunch at school. It will definately be tougher with him, since he doesn't feel all that sick.

Good luck....wish I could be of more help to you!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,558
    • Most Online (within 30 mins)
      7,748

    Wamedh Taj-Aldeen
    Newest Member
    Wamedh Taj-Aldeen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @LynnM, when you say, "today, his numbers were high", what numbers do you refer to? Are you speaking of celiac antibody scores? Can you be more specific and can you post the test names, the numbers and the reference ranges for the tests? So, I am understanding you to say that topical exposure to gluten doesn't cause him GI reactions but ingestion of gluten does but at the same time you are attributing the "high numbers" to the topical exposure?
    • Ginger38
      So I recently had blood work and my hemoglobin, hematocrit, protein and alkaline phosphatase were all low. They have never been low in the past but since august of last year I have been on the in and off gluten rollercoaster as I mentioned in previous posts. Should I be concerned with these new findings? I am worried I have made myself really sick and done damage or something this past year 
    • LynnM
      Thank you Scott. My son doesn't have a reaction topically, only when ingested. Interestingly though, the doc told us the face cream getting gluten into his bloodstream doesn't do the damage akin to when gluten is ingested. He had no reaction when using the face cream, it only presented in blood-work. I'm hopeful from all the comments today and will wait for the GI doc to reply. If he is cleared to use it, I will encourage SHIELD to get a gluten-free certification 
    • Scott Adams
      It’s great that you’re taking the time to research products carefully for your son with celiac disease—especially since accidental gluten exposure through skincare can be a real concern for sensitive individuals. Based on the ingredient lists you’ve shared, none of the products appear to contain obvious sources of gluten like wheat, barley, or rye derivatives. Ingredients like glycerin and tocopherols (not listed here but often a concern) can sometimes be derived from wheat, but many manufacturers use plant-based or synthetic sources. SHIELD’s transparency and willingness to share their full ingredient list is a good sign, and their note about not intentionally adding gluten is reassuring. Still, because ingredient sourcing can vary and sensitivities differ from person to person, it’s wise that you’ve reached out to your GI specialist to be sure these products are safe for your son’s specific needs. In the meantime, if you do try any of the products, consider patch-testing them first and watching closely for any signs of skin irritation or reactions. PS - Most people with celiac disease won't react to skin products that may contain gluten, but I still recommend finding gluten-free products.
    • LynnM
      Greetings Trents and Scott. This is the first time I'm posting here so I apologize in advance if I'm not replying properly. My 13 YO was diagnosed at age 5 and once gluten was removed from his diet, he grew 3" in a year, skin became much better and dark circles around his eyes disappeared. Today his numbers were very high and our new dietician discovered his face cream (Clinique dramatically different lotion) contained gluten. My fault for not checking.    His acne really has only just started and he's using OCT gluten-free products but the SHIELD is nothing short of miraculous for my 16 YO son and the 13 YO is eager to start. I will await his dietician's reply or google each ingredient.    I don't want to put him on that Rx as it's not that bad and isn't painful either. Just a boy starting 8th grade and doesn't want bad acne.    When I hear back I will circle back. 
×
×
  • Create New...