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
dandelionmom
Posted

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
buffettbride
Posted

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
ryebaby0
Posted

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
dandelionmom
Posted
  • Author

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
taweavmo3
Posted

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
JennyC
Posted

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
2Boys4Me
Posted
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
Guest andie
Posted

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
crittermom
Posted

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
JennyC
Posted
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
celiac-mommy
Posted
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
Kibbie
Posted

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
KimC1
Posted

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
Glutenfreefamily
Posted

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
natalie
Posted

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.

Go to topic listing

  • 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. cristiana
      - cristiana replied to Scatterbrain's topic in Sports and Fitness
      5

      Feel like I’m starting over

      Hi @Scatterbrain Thank you for your reply. Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct. Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two...
    2. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy. Benfotiamine and other forms of Thiamine do not bother me at all. There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes. The sulfur in thiamine is in a ring which does not trigger sulfa allergy...
    3. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...
    4. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
    5. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      5

      Feel like I’m starting over

      Hello @Scatterbrain, Are you getting enough vitamins and minerals. Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D. By the way you should get your mom checked for celiac disease. You got it from your mom or dad. Some studies show that following a gluten-free diet can stabilize or improve symptoms...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,294
    • Most Online (within 30 mins)
      7,748
    laurallee
    Newest Member
    laurallee
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
×
×
  • 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.