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.

  • 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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.