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

Glutening & Your Child ~ A Poll:


dandelionmom

Recommended Posts

dandelionmom Enthusiast

I was just curious how often other parents see glutening happening with their Gluten-free children. If you don't mind answering, please do! Sorry I'm not sure how to properly format this as a poll, hope this is okay to post this way!

1. How often does your child get glutened?

2. How long do symptoms usually last?

3. Can you always identify where the gluten came from?

4. How do you help them through a glutening?

5. How long has your child been gluten-free?


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



Celiac.com Sponsor (A8-M):



buffettbride Enthusiast

1. How often does your child get glutened?

Not often. Each stretch is longer than the next. At first it was like once a week it seemed. Then once every two weeks, then a month. We're still pretty new at this. I haven't glutened her in a long time. It's been a case of CC two times from a restaurant (different ones) and a CC at MILs house. Some weird mustard and some weird tea that gave her symptoms. Sitting at the kitchen table where her brother had MaltOMeal (which is why we made our house gluten-free). And one time her daddy was a dumbass and gave her a "real" cookie because he thought they were gluten-free. :rolleyes: You sure do learn the lessons quickly with this stuff!

2. How long do symptoms usually last?

GI symptoms, 1 day--onset is usually within 15 minutes of glutening and progressively get worse. Yellow poo (within a few hours of glutening, no real D though), bad throbbing tummy ache, "reflux." Emotional symptoms, about 2-3 days. Dark circles under eyes. Tired. Unfocused. Brain fog. Physical pain usually in legs and back. Reactions get worse the farther she is from dx.

3. Can you always identify where the gluten came from?

We've been very good at tracing our steps back to where it came from. The trickiest was some bottled Lipton tea (diet w/ citris) that really seemed to upset DD. I don't know if glutenining for sure but she felt rotton two nights in a row on days she drank it. I never found evidence that it had gluten in it, but she sure avoided it from then on. Most recently (ruined our over-month-long stretch) DD ate some grapes that had been CCd by contact with gluteny hands. The most surprising glutening was early on and from some Emeril's Honey Mustard that is on Emeril's gluten-free list but really gave her symptoms.

4. How do you help them through a glutening?

Lots and lots of water. Some TLC. A good gluten-free snack to give the tummy something else to do. Extra rest and patience for the days ahead with brain fog and lack of focus.

5. How long has your child been gluten-free?

The precise day was June 4th 2007 for 100% compliance. She was gluten-lite for the last few weeks of school. Official dx date was May 17th 2007. She goes to Catholic school and wanted to finish that school year receiving the host.

I'm interested in what other parents say, too! We're always looking to extend the stretch. We're just over 3 months into this and I'm hoping by the 6 month mark we've worked out all the "bugs" and get that number down to just a few times a year (of course, no glutenings would be ideal!). Thankfully DD is a great eater and makes great food choices and doesn't seem sensitive to other foods like dairy and soy. She loves staying well and eating well and *sigh* what a relief for me!!

ryebaby0 Enthusiast

1. How often does your child get glutened?

2. How long do symptoms usually last?

3. Can you always identify where the gluten came from?

4. How do you help them through a glutening?

5. How long has your child been gluten-free?

1. Almost never (maybe 2x so far) , but my husband does a few times a year

2. about 2-3 days

3. Ha! Don't we wish!! Tends to be the well-meaning relatives CC gluten-free food

4. lots of sympathy and movies

5. my child: coming up on 4 years, 3yr. for my husband

dandelionmom Enthusiast

Oops, didn't answer my own poll! :)

1. Since our diagnosis in mid July, she's been glutened 4 times

2. Our longest bout was 12 hours

3. 2 were my mistake when we were eating out, one was unidentified, and one was her sister slipping her a goldfish cracker

4. movies, snuggling, and pedialyte (she gets dehydrated FAST)

5. 2 months

taweavmo3 Enthusiast

1. How often does your child get glutened?

Big glutenings....maybe 1 or 2 a year.

2. How long do symptoms usually last?

Vomiting for 2 or 3 hours, then fever, D sometimes (not usually), then fatigue and irritability for two weeks

3. Can you always identify where the gluten came from?

The big accidents, I have always known. Like when the church lady gave her a cracker, and when my dad gave her an ice cream cone, lol. Those were the biggies last year. Small CC issues are trickier to pinpoint, and even then, I'm not always sure it's gluten.

4. How do you help them through a glutening?

Just lots of TLC, bland foods, and alot of water

5. How long has your child been gluten-free?

2 1/2 years

JennyC Enthusiast

1. How often does your child get glutened?

2. How long do symptoms usually last?

3. Can you always identify where the gluten came from?

4. How do you help them through a glutening?

5. How long has your child been gluten-free?

1. Slightly every few weeks??? He's never gotten any gluten food, but I suspect cross contamination from mainstream processed foods. I am working to cut that stuff out of his diet. <_<

2. Usually he has D a couple times the next day, occasionally into the next day. Until that passes his tummy is also upset. His symptoms are pretty mild compared to many others.

3. It is often hard to identify, since it is a cross contamination issue.

4. I give him lots of water and tummy-friendly gluten free food. I also give him plenty of sympathy.

5. He has been gluten free since mid March 2007.

2Boys4Me Enthusiast
I was just curious how often other parents see glutening happening with their Gluten-free children. If you don't mind answering, please do! Sorry I'm not sure how to properly format this as a poll, hope this is okay to post this way!

1. How often does your child get glutened?

2. How long do symptoms usually last?

3. Can you always identify where the gluten came from?

4. How do you help them through a glutening?

5. How long has your child been gluten-free?

My son has been gluten free for just over two years (since August 2005). He has/had no symptoms other than anemia, which I can't check, so it is entirely possible that either we are: 1. doing a fabulous job and he's never been glutened, or 2. we're doing a crappy job and he's been glutened daily from cc. Who knows? I realize this doesn't help your poll at all, but it's our reality.


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



Celiac.com Sponsor (A8-M):



Guest andie

1) How often is my son glutened?

At first I thought he was being extremely good and we were on the right track. However once he started feeling better and was able to identity when he was being glutened, it now seems like every 3 days. I tried making him lactose free but that didn't help. I tried giving him low dose Zantac thinking he was having reflux. That only worked for 2 days. Now I am back at the beginning and reexamining everything I am giving him. (Just now he tells me someone at school gave him Doritos).

That is the most odvious source, but some days I just don't have a clue.

2) Symptoms

Very vague, because he is very vague. Lately getting him to talk better. Nausea, abd pain. Sometimes diarrhea. Seem to be worse in the evening, but that is when he is not distracted and it feels worse. Occassional vomiting.

Because he was undiagnosed for so long, he has learned to ignore most of them and to him that's "normal".

Celiac blood test neg but low iron, low B12, low folate. Fatigue. Mild anemia. High CSR, high ESR. Neutropenic with high fevers. Headaches.

3)Have been on the diet for about 3 months. Started it on my own because didn't know what else to do.

O. K. I forget the rest of the questions. Hope this helps.

Just a quick question for those of you out there with children. Are there any commercial cereals that are gluten free. ie. corn pops, captain crunch, alphabets?

Thanx

Andie

crittermom Enthusiast

1. How often does your child get glutened?

2. How long do symptoms usually last?

3. Can you always identify where the gluten came from?

4. How do you help them through a glutening?

5. How long has your child been gluten-free?

1. I also thought we were being really good, however then I received the results of her 1 year blood test. I found out she was getting glutened when her antibody test came back at 80.1 only down 20 pts in a year.

2. Hard to tell, they reappeared but were not a constant and they were different. The blood in the stool didn't reappear which was a constant before going gluten-free. However her stools were greenish and would go back to brown but didn't turn white like the beginning. She started complaining of leg pain, I didn't know that could be a symptom. Her behavior got questionable again although my doctor said the things she was doing are normal for 5 year olds and she was testing the edges. I think that things weren't continuous because she doesn't use syrup every week so she probably felt better and her poops returned to normal after a day or so and then a week or two later it would hit again. I didn't put it together. :( Once the gluten was gone, everything dissappeared. Poops are back to normal and behavior is wonderful. Big time learning experience for me! :rolleyes:

3. No I couldn't find it anywhere until I called a Pinnacle along with about 30 other companies that we use from laundry soap, bath soap, hand soap, food, vitamins... blah blah blah you all know the drill! ;) The only one that had changed was Pinnacle Foods who makes Mrs. Butterworth's syrup. Their natural flavoring contains barley. We are always so careful and never eat out. It didn't occur to me that she was getting glutened. That teaches me for being to sure of myself! <_<

4. I always go potty with her when she tells me her belly hurts. I sit on the floor in front of the potty and hug her. Give her lots of love and snuggles. And she drinks a lot more water.

5. Since Sept of 2006

JennyC Enthusiast
O. K. I forget the rest of the questions. Hope this helps.

Just a quick question for those of you out there with children. Are there any commercial cereals that are gluten free. ie. corn pops, captain crunch, alphabets?

Thanx

Andie

For mainstream cereals you want to stick to General Mills. All of the Pebbles cereals (cocoa, fruity & berry) are gluten free. Trix and Dora Stars are also gluten free. Safeway brand Cocoa Astros (cocoa puffs) are also gluten free.

Other good cereals are Health Valley Crunch-em's, Erewhorn rice cereals & Envirokids cereals (not all are gluten free).

I hope this helps. :)

celiac-mommy Collaborator
1. How often does your child get glutened?

2. How long do symptoms usually last?

3. Can you always identify where the gluten came from?

4. How do you help them through a glutening?

5. How long has your child been gluten-free?

1. Once, last October

2. 2 days, 1st 6-12 hours-violent vomitting, 2 days of uncontrollable D

3. So far. The last one was the pumkin patch hay ride

4. BRAT diet, lots of binding foods, loves and quiet time

5. January 4 2006

Kibbie Contributor

1. How often does your child get glutened? I can only think of 1 definate glutening and 1 other possible glutening in the past year.

2. How long do symptoms usually last? Tummy symptoms last until she gets rid of it via poop or vomit, behaviour sypmptom lasted about 24 hours

3. Can you always identify where the gluten came from? Nope. the one time I know she was glutened I can only assume that the restruant (one we dine at a lot) messed something up... but we eat there every weekend and this was the 1 time it happened. She's 2 so she could have gotten into soemthing somewhere so who knows.

4. How do you help them through a glutening? Other than to help fix her tummy ache I don't. Her behavior stuff... same rules apply with glutening as with out.

5. How long has your child been gluten-free? One year yesterday!

KimC1 Newbie

1. How often does your child get glutened?

Not very often now. Maybe 2-3 times a year.

2. How long do symptoms usually last?

She has several lose stools and abdominal pain for about 12-24 hours after contact. It takes a few hours for it to kick in but then she feels terrible.

3. Can you always identify where the gluten came from? Most of the time we can figure it out now.

4. How do you help them through a glutening?

Just TLC and sitting with her in the bathroom )-: She is 4.

5. How long has your child been gluten-free?

Since Oct 2004

Glutenfreefamily Enthusiast

1. She was glutened 3 times at family's houses till I started bringing all our own things. Answer #3 describes it better.

2. She gets a rash on her bottom with stinky poops and cranky so Im sure she gets a stomach ache.

3. At first no, now I only make her foods mostly from scratch so she hasn't been glutened for awhile. We also take our own dishes, plates, silverware, little hand towel and hand soap. Its a hassle but it keeps us both feeling a lot better.

4. At 3 I just start the butt cream when she gets a rash and by the time her poop is stinky it is usually the next day and I just try to get her to eat soothing foods for her stomach. Lots of tlc.

5. Around two years, same time I went gluten free.

natalie Apprentice

1. How often does your child get glutened? Maybe 2x per year if that.

2. How long do symptoms usually last? Major vomitting for 3-4 hours, then sleepy and faint, clammy skin, irritable, stomach and throat pain.

3. Can you always identify where the gluten came from? Usually

4. How do you help them through a glutening? Cuddles, cold cloth, rice or bananas

5. How long has your child been gluten-free? Since Nov 2005

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. 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: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.