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
      130,655
    • Most Online (within 30 mins)
      7,748

    mcarrigan1958
    Newest Member
    mcarrigan1958
    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
      Good idea, @LynnM! That would be helpful to other celiacs who find themselves on the more sensitive end of the spectrum. You might also want to send them information about how to initiate the process with GFCO. But just a word of caution here, don't be surprised if the company is reluctant to pursue this certification as it can tie their hands with regard to changes in formulation in the future. Manufacturers often make ingredient decisions not only based on desired product outcomes but on cost factors. It can also put them at a liability risk should some ingredient supplier introduce an ingredient that was cross-contaminated with gluten without knowledge and cause someone to have a reaction. Testing for gluten-free certification is not done as frequently as consumers imagine and products can and do get out of spec at times. And once you slap a gluten-free certified label on a product, you are instantly open to possible liable suites. 
    • LynnM
      Hi Everyone. I just heard back from my son's GI doc and nutritionist. SHIELD products ARE gluten free. I am going to ask the company to Pursue gluten-free certification. 
    • Scott Adams
      Your experience highlights a common frustration in celiac disease diagnosis—discrepancies between lab results, biopsy findings, and clinical symptoms. The "localized mild nodular mucosa" noted in your duodenal bulb could indeed be significant, even if the overall pathology was deemed negative. Nodularity in the duodenum is often associated with lymphocytic infiltration, a feature seen in early celiac disease (before villous atrophy develops) or in conditions like H. pylori infection, chronic inflammation, or even food sensitivities (e.g., gluten or dairy). Since you had strongly positive celiac labs (e.g., TTG-IgA, EMA, or DGP), this nodularity might reflect an early or patchy immune response to gluten that wasn’t severe enough to meet traditional biopsy criteria (Marsh 3 damage). Some studies suggest nodular mucosa can precede classic celiac changes, especially in seropositive patients. Given your lab results and symptoms, it’s possible you have non-celiac gluten sensitivity (NCGS) or are in an early stage of celiac where damage isn’t yet widespread. False-negative biopsies aren’t uncommon due to sampling error (celiac can be patchy) or misinterpretation of subtle changes. If you’re still symptomatic, you might discuss repeat testing (e.g., HLA-DQ typing if not already done, or a gluten challenge with both serology and biopsy) or consider a capsule endoscopy, which can visualize more of the small intestine. Alternatively, H. pylori testing or a trial of strict gluten-free diet with symptom monitoring could provide clarity. Your case underscores the importance of correlating labs, histology, and clinical response—not just relying on biopsy alone. A second opinion from a celiac-savvy GI could be worthwhile!
    • Scott Adams
      The burning sensation you describe—particularly upon waking or after exercise—could indeed be related to systemic inflammation, which is common in autoimmune conditions like Hashimoto's and celiac disease. Gluten exposure, even in small amounts, may trigger an immune response that exacerbates inflammation, leading to the achiness and burning you feel, especially in areas like your hips and chest. Stress and poor sleep can further worsen inflammation, creating a cyclical effect. The fact that these symptoms improved before your gluten challenge but returned afterward strongly suggests a connection to gluten sensitivity. Additionally, prolonged immobility during sleep might contribute to stiffness or discomfort, but the burning sensation points more toward an inflammatory or neurological component. Your heightened food sensitivities and digestive issues could indicate ongoing gut dysfunction, possibly due to intestinal permeability ("leaky gut") from gluten exposure or autoimmune activity. Since exercise also triggers symptoms (except during your remission period), it may be worth exploring gentle movement like yoga or walking to avoid overexertion while supporting circulation. Consulting a healthcare provider familiar with autoimmune conditions—particularly one who can guide you through targeted testing for celiac (without a full gluten challenge) or assess for other triggers like histamine intolerance—might help clarify next steps. In the meantime, prioritizing anti-inflammatory foods, stress management, and restorative sleep could provide some relief.
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • Create New...