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

Gluten Free But Still Stomach Pain


kate12345

Recommended Posts

kate12345 Apprentice

My 5 year old has been on a gluten free diet probably 10 days now. Only one mistake that I know of happened. She is better but still complaining of stomach pain. It starts as soon as she swallows a bite for most foods. She especially has not liked fruits when all this started. We do not have the results of the biopsy yet. We should get them anytime. When she was a baby, she had blood in her stool, which was eliminated with no dairy products. The dr said that they outgrow that and it is not the problem. I do not know if I should just go to the pediatrician and ask for food allergy testing or ask for an allergist specialist or what.

I do not know if 10 days gluten free is enough to determine if gluten is the cause of pain or not. She had a positive DGP IgG, which led to the biopsy.

Ideas?

Thanks, Jennifer


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



Celiac.com Sponsor (A8-M):



sahm-i-am Apprentice

I know that casein and lactose can be hard on Celiac's systems, especially when healing. Take out dairy while your child is healing. If she has had Celiac since birth there is alot of healing that needs to take place. It will take a while. Maybe in a few months you can add diary back in and see how she tolerates it. My daughter has been gluten free for 18 months (she is 12 yo) and still drinks lactose free milk, but even if she drinks too much she will get a stomach ache. There are cow milk alternatives.

If you are new to the entire gluten free lifestyle you may want to look at cross-contamination with gluten in the house. Also, playdough has gluten, look at art supplies, etc that may get on her fingers and then gets transferred to her mouth. Does she go to preschool/Kindergarten? She may be getting gluten there.

kate12345 Apprentice

Great. That helps. We just found out today that the biopsy confirmed Celiac. I have a lot of mixed feelings but really glad that I may have found someway to keep her stomach from hurting. Thanks, Jennifer

kate12345 Apprentice

Is the playdough ok as long as she washes her hands after she plays with it?

alex11602 Collaborator

Is the playdough ok as long as she washes her hands after she plays with it?

In my experience with my 5 year old daughter, regular playdough is not ok for us because she doesn't always remember to keep her hands away from her mouth. Good Luck.

sahm-i-am Apprentice

Katie - here is a link to a resource you might find useful: https://www.celiac.com/categories/Celiac-Disease-%26amp%3B-Kids-by-Danna-Korn/

Danna Korn started a group called R.O.C.K. (Raising our Celiac Kids) and they have support groups/websites in alot of states, too. She has a wealth of information

that helped me. An adult living a gluten free lifestyle is very different than a child growing up in a gluten free lifestyle. There are so many more pitfalls to be aware

of for kids. And how many of us were learning to read labels as kids??? But our kids have to learn in order to stay healthy. We have to teach our kids to ask about ingredients

before they eat a treat offered by a friend. We have to train them to be aware of crumbs and cross contamination before they go to sleepovers. If they go out to eat with friends they have to learn how to ask the right questions before ordering a meal. These are some of the things I have learned from Danna and others. At least you have alot of time before these scenarios happen for your daughter! :) But you do have to deal with things that I didn't, like playdough. And making sure she doesn't impulsively share a snack of a friend. But this board is also filled with parents that have been in your shoes - such a nice place. Don't be afraid to ask.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,062
    • Most Online (within 30 mins)
      7,748

    Lexxi Hartless
    Newest Member
    Lexxi Hartless
    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

    • trents
      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
    • Heatherisle
      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
×
×
  • Create New...