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

gluten-free Toddler Had Gluten By Accident Help


Kellyrassy

Recommended Posts

Kellyrassy Newbie

Wednesday my son who has been gluten-free for 7 months was served meatballs at school. Since he has been so gassy, big bloated belly and diarrhea not interested in eating much. Today he seems very lethargic and had the worst rash on his bottom area. He keeps moaning and his eyes look tired. Is this all from the meatballs? How long can i expect this to be going on, the lethargic mood is freaking me out. Help please!


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

We are all different. The symptoms you describe can all be related to the accidental gluten exposure. It is possible that he also has a bug.

Personally, I remain very lethargic for several days. Try to get him to drink a good amount of water.

Kellyrassy Newbie

Thanks so much for the feedback!

tarnalberry Community Regular

I would expect it to be gluten from the meatballs - they almost always have breadcrumbs in them.

Kellyrassy Newbie

Thank you, how long does this reaction last typically? A couple days? Weeks? Month??

LFitts Apprentice

I wish I could help but I am nearly in tears tonight because my 9 year old is suffering again tonight and I am so sick of this. We have read every label and prepared everything so carefully. I have no idea what got her this time, no clue. Either a label was wrong or she is just super-sensitive to cross-contamination in our house. I have had it. I am ready to just put the whole family on raw veggies. The first few weeks seemed easy and she was feeling so much better, now she's having a mysterious accidental exposure of some sort every couple of days! When will this get easier???

Kellyrassy Newbie

I am so sorry to hear about your 9 year old, it's so awful to see them suffer especially when you working so hard at a gluten-free lifestyle. How long have you been gluten-free? Could it be at school or something? What are her symptoms?


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Good Morning Kelly!

Unfortunately there is no set time - for some it passes in hours and others days -- worst case and not common is weeks. It really depends on so many factors -- the meatballs may have tasted yummy so he may have ingested quite a few? As time gluten-free increases - the reactions often become worse to smaller and smaller amounts of gluten -- hence the very real problem of cross contamination that is the bane of our existence.

Welcome LFitts!

So sorry to hear your family is having such a rough time. It really does get better -- as a family you will learn the level of care needed to keep your child healthy and I assure you there are many, many wonderful and tasty gluten-free options -- most of start with whole ingredients. If you haven't had oportunity - take a look at the Newbie 101 thread -- this is filled with great information that will help ease the transition -- I won't lie - the transition is very tough, but as time passes it does get much easier.

First thing to look at in a shared kitchen is cookware, cooking utensils, toaster, cutting board, collender, etc. If these items are being shared for both gluten-free and regular cooking you have a problem. A great way to start is have a second set of cookware/utensils in a bright color so that everyone knows to only use them for gluten-free items.

Hang in there - both of you -- I promise - it does get easier :)

kareng Grand Master

First thing to look at in a shared kitchen is cookware, cooking utensils, toaster, cutting board, collender, etc. If these items are being shared for both gluten-free and regular cooking you have a problem. A great way to start is have a second set of cookware/utensils in a bright color so that everyone knows to only use them for gluten-free items.

Hang in there - both of you -- I promise - it does get easier :)

Also - no sharing PB, butter, Mayo, etc between gluten eaters and non-gluten eaters. Get some colored duct tape and put a big piece on every gluten-free only thing like peanut butter, etc. You can use it on the handles of a colander if you can't find different colored ones. My hub looked al over for a red one for gluten-free as most were white plastic. Before that, I put my red tape on the handles of a white one.

bartfull Rising Star

LFitts, it isn't uncommon for us to show great improvement at first, and then to slide back into being sick. Some of it could be due to other (most likely temporary) intolerances, and some of it could just be the body is still healing. Definitely check for cross contamination, but if you find that there is no chance of it, just give it time. And DO keep a food diary. That way if there are other things that are bothering her such as dairy, corn, or soy (common culprits), you can try eliminating them and see if she improves.

LFitts Apprentice

Also - no sharing PB, butter, Mayo, etc between gluten eaters and non-gluten eaters. Get some colored duct tape and put a big piece on every gluten-free only thing like peanut butter, etc. You can use it on the handles of a colander if you can't find different colored ones. My hub looked al over for a red one for gluten-free as most were white plastic. Before that, I put my red tape on the handles of a white one.

Thanks everyone for the encouraging words. Our daughter was diagnosed in November with celiac, so we're about 5 weeks into her being gluten free. At first it was great, but now she's having severe stomach cramping and other pre-gluten-free problems (itchy rash, feeling blah) about once every 3 days and her symptoms last about half a day. I think that maybe several things in our house are / were contaminated - peanut butter, butter, even yogurt. I don't know -- I am sensing gluten molecules everywhere - making me crazy. I keep wiping down everything. What makes it worse is that I make cakes for people. I'm trying to wrap that up and just finish the ones that I am obligated to do because I feel like every time I turn on the mixer I am filling our house with poison. Certainly all of the joy/fun has left my once lucrative side job.

She is feeling great today and we are eating simply today and being careful, fingers crossed.

GottaSki Mentor

Thanks everyone for the encouraging words. Our daughter was diagnosed in November with celiac, so we're about 5 weeks into her being gluten free. At first it was great, but now she's having severe stomach cramping and other pre-gluten-free problems (itchy rash, feeling blah) about once every 3 days and her symptoms last about half a day. I think that maybe several things in our house are / were contaminated - peanut butter, butter, even yogurt. I don't know -- I am sensing gluten molecules everywhere - making me crazy. I keep wiping down everything. What makes it worse is that I make cakes for people. I'm trying to wrap that up and just finish the ones that I am obligated to do because I feel like every time I turn on the mixer I am filling our house with poison. Certainly all of the joy/fun has left my once lucrative side job.

She is feeling great today and we are eating simply today and being careful, fingers crossed.

Might want to try replacing your All Purpose Flour with a gluten-free version -- I use all my old cake recipes with Bob's Red Mill -- others don't care for BRM, but like Pamela's or others. Gluten eaters eat my cakes all the time and have no idea it is gluten-free until I tell them.

kareng Grand Master

Can you mix with the flour in an enclosed small space away from the kitchen? If not , just remember that it can take at least 24 for the flour floating in the air to settle. That means, anything sitting on the counters, like a water cup or a bowl of fruit, could have a layer of flour.

Takala Enthusiast

Hey, LFitts, hang in there. Paper towels, paper towels, paper towels ! You may, in the near future, be making yummy gluten free cakes, with your new, dedicated gluten free mixer and baking pans. There is this demand, you know, especially for "mixed" families and special occasions. Plus your daughter might just be reacting to something like soy flour - OMG, the first time I had a major hit of that stuff, I had eaten a bunch of cookies after a long, cookieless drought, and it nearly knocked me out flat. Talk about classic conditioning and motivation, I still shudder when I see that brand in the stores and think "No Cookie" and head over to the gelato in the frozen case aisle. :P

Celiac Mindwarp Community Regular

It looks like you may get to be your neighborhood gluten-free baker then! It takes some practice but many people actually prefer it. My husband even made eclairs recently ( we are in the UK and just substitute Doves Farm gluten-free flours).

I hope you track down what is affecting your daughter. I did well for a couple of months, then got hit 5.times in 6 weeks. We are a mixed house, but only bake gluten-free now. We got better at cleaning up, use lots of kitchen paper now. I am also eating more completely whole food and so nothing processed.

It takes time to work it out, but you will get there.

Good luck

GretaJane Newbie

You need to stop baking with the gluten containing flours. The dust gets everywhere. Kids touch everything and put their fingers in their mouths or eat something without washing their hands. i'm sorry for your loss of baking as you know it. Good luck!!! Its long learning process that your child inevitably will have to suffer through. I've made so many mistakes that leave me crying to have hurt my child.

GFinDC Veteran

Making gluten-free cakes is easy. You can get Betty Crocker gluten-free cake mixes at some grocery stores. The yellow cake mix was little gritty to me so I used to add a banana to it. It does have potato starch in it so it you are avoiding nightshades they don't work.

Open Original Shared Link

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. - trents replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

    2. - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

    3. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    4. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

    5. - Scott Adams replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

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

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lalan45
    Newest Member
    lalan45
    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

    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.
×
×
  • 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.