Jump to content
  • 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

Probiotics? Other Supplements For Kids?


Christine0125

Recommended Posts

Christine0125 Contributor

Anyone give their kids probiotics or other supplements to help? 

 

A little background: My almost 10 year old was diagnosed with celiac last December.  The first few months were great gluten-free but lately she's been having tummy ups and downs (she's at the too embarrassed to share bathroom issues with me phase).  I started her on gummy probiotics a few weeks back and it really seemed to help so I thought I'd found the solution to keeping her regular but now it seems the issues are back. 

 

Any tips and tricks from parents out there as to what helps keep your celiac kids feeling well?  We plan to keep a food log to see if there is another obvious trigger that we haven't clued into.  95% of the time we eat at home in a completely gluten free kitchen.  When we eat out, I'm also celiac so we eat the same thing and I've not felt any obvious signs of gluttening (although I know she may be more sensitive than me). 

 

So hard to figure out when she's at an age where if I push her to share too much then she shuts down completely so I feel I'm walking a thin line trying to figure things out.  I do have her onboard with the casual "hey, lets just experiment with the things you eat a bit so we can make sure you feel good all the time." 


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



Celiac.com Sponsor (A8-M):



Rosiesallergies Rookie

Has the doctor looked at any other food sensitivities? Milk/casein is frequently a problem for kids. My child couldn't eat dairy for years after going gluten-free.

Another thought is school environment. Is your child getting contaminated at school? Lunch room is the obvious place. What about food based learning? Art class? Teacher rewards like candy?

Does your child bite their nails? Or possibly not wash their hands well enough before eating?

Good luck finding the source of the problem.

GF Lover Rising Star

It does sound like she is still getting gluten.  Most likely at school.  And I'm assuming she is in school and not home schooled.   When your first diagnosed, the motivation is great to comply with the diet because the reward is immediate, feels better.  Then she's out for summer vacation, the diet is still going well, Mom is still making food decisions.  Now School has started up. Maybe she is making mistakes at school, feeling pressure from peers, cross contamination.   And of course, another intolerance is possible.  I wouldn't start supplementing with vitamins unless she is actually deficient.  I think a pro-biotic is fine.

 

Colleen

Christine0125 Contributor

She very well could be getting cross-contaminated at the lunch table although she purposely requests no nuts in her lunch so she can eat at the less crowded peanut-free table.  We did a 504 plan for her which I could update to have her sit separately although that's a tough call based on the social aspect of elementary school. 

 

I'm certain she's not experimenting due to peer pressure (not that type of kid at all).  I do likely need to explore dairy or other intolerances more... hence that food log that I've been talking of starting but haven't yet done.  I've seen apps for that, anyone use one?  Maybe I'll ask that on one of the general boards. 

 

Thanks for your input!

GF Lover Rising Star

Yea, I don't think I would have her sit separately.  Although I wonder if she is getting cross-contaminated with her school lunch.  It is prepared in the same kitchen at school?  Or do you pack her lunch?  Otherwise, like you said, look for other intolerances.  Dairy would be the first to try.  I don't know of any apps.

 

Colleen

Mizzo Enthusiast

If you have the option of volunteering for lunch duty for 1 or 2 days, that can give you the insight you need regarding cross contamination at lunch. My DD is 10 and in 5th grade and they have switch classes. If your girl has the same make sure the switch desk is being wiped down after snack time. Also a snack/lunch mat brought from home will dramatically cut down on CC issue's. 

 

Keep up the food diary for a while you may notice a trigger like dairy, soy, oats or corn. Probiotics are a good idea. My DD has multivitamins,Omega 3 and Fiber gummies everyday. We are 3 1/2 yrs gluten-free and she still has constipation issue's with the opposite happening when we use Miralax, and with the added DX this year of Hashimota's disease there is always something. My girl doesn't eat veggies so until that changes for us, it will always be like this.  

 

good luck

greenbeanie Enthusiast

My daughter is four and was just diagnosed in June, and for the first couple months I gave her probiotics every day. We used Go Live flavorless powder packets from Whole Foods, mixed with juice. It seemed to make a really big difference at first, and on the occasional day when we'd run out or I'd forget she'd have almost-diarrhea, like she did before diagnosis.

After a couple months I started giving her the probiotics a few times a week instead of every day, and this was also a time when her general behavior and mood started to decline again. At first I thought she must be getting glutened at pre-school (which had just started), though they are extremely careful about cc and all art supplies and snacks served there are now gluten free. Then I thought that maybe the decline was just due to being overtired and not napping at school. And maybe it was one or the other of those things - I'm really not sure. But somewhere along the line I realized that I'd also reduced the probiotics around the same time, so I resumed giving them to her daily. Within two days, she was on the upswing again! Maybe it was a coincidence, but I'm not planning to stop again anytime soon. A nutritionist at her GI's office had recommended either yogurt or probiotic supplements every day for a while after diagnosis (she didn't say how long), so we're going to stick with them for at least a few more months. Good-quality probiotics sure are expensive, though!


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



Celiac.com Sponsor (A8-M):



  • 2 weeks later...
ImaMiriam Apprentice

Probiotics seem very complicated to me. I took my 12 year old daughter to a nutritionist on Saturday, and she said that one should only take probiotics for a short period of time, for example, for 2-3 weeks after being on an antibiotic. My daughter was taking 2 different probiotics which the pediatric GI had proscribed, and my daughter was continuing to have stomach aches. The nutritionist said she thought the stomach aches might be from the probiotics.

 

We're now off the probiotics and totally off dairy. We'll be off dairy for 1-3 weeks and see what happens. If all stomach symptoms go away, then we'll start dairy really really slowly - the nutritionist gave us a way to gradually add back the dairy foods, starting with the ones that are most easily tolerated.

 

We're also keeping a food diary. Here's what to put in your diary -- meal, time of day, location, amounts of the foods you eat, and any pain. I'm already finding this diary helpful to look at. I think including all of these details are really important. We'd tried a diary before and didn't put amounts and also didn't write down if there was any pain...

 

My daughter also had some blood tests for vitamin levels and so on. I think these are a good idea if they help you see what's going on. If your child is constipated frequently and/or diarrhea frequently, other issues will possibly creep in such as anemia...important to watch out for this.

 

Good luck!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    2. - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

    3. - Scott Adams replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fruits & Veggies

    4. - Scott Adams replied to yellowstone's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Cold/flu or gluten poisoning?

    5. - Scott Adams replied to hjayne19's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Screening

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,091
    • Most Online (within 30 mins)
      7,748

    Condon
    Newest Member
    Condon
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
    • Scott Adams
      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a hypersensitive system. This ambiguity is a significant source of anxiety. The key differentiator often lies in the symptom pattern and accompanying signs: gluten reactions frequently include distinct digestive upset (bloating, diarrhea), neurological symptoms like "brain fog," or a specific rash (dermatitis herpetiformis), and they persist without the respiratory symptoms (runny nose, sore throat) typical of a cold. Tracking your symptoms meticulously after any exposure and during illnesses can help identify your personal patterns. Ultimately, your experience underscores the reality that for a sensitive body, any immune stressor—be it gluten or a virus—can trigger a severe and similar inflammatory cascade, making vigilant management of your diet all the more critical. Have you had a blood panel done for celiac disease? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is important for your lifelong medical record, can rule out other issues, and is often needed for family screening eligibility. The conflicting advice from your doctors creates understandable anxiety. The challenge, of course, is the "gluten challenge"—reintroducing gluten for 4-6 weeks to make the biopsy accurate. Since your symptoms resolved, this will likely make you feel unwell again. You must weigh the short-term hardship against the long-term certainty of a concrete diagnosis. A key discussion to have with your GI doctor is whether, given your clear serology and clinical response, would be getting a diagnosis without the biopsy.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.