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Challenges Your Kids Face?

B'sgirl

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B'sgirl Explorer
B'sgirl
Posted

What kinds of challenges do your kids face with their "food allergies" and other issues? What do you do to help them feel better about it? I have a 2 1/2 year old and a 1 year old who have to be gluten/milk/soy/egg/yeast free. So far they are a little young to feel out of place but I want to know how to prepare myself. I would love to hear specific experiences. So far my son's worst experience is in family gatherings when someone has made some very attractive looking dessert. Everyone is eating it and it smells so good. He wanders around with his eager face then looks at me and says, "That'll mayka tick!" (That'll make you sick). It breaks my heart. I try to make sure he has something he likes to make up for it but it's never quite the same. My neighbor says her children keep their sandwiches hidden in their lunch bags so no one can see that it is different.

What have your children experienced and how do you respond to it? How do they handle it?

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Rondar2001 Apprentice
Rondar2001
Posted

My daughter does feel left out at times when she sees something that her friends are eating that she can't have, but I try to provide her with as many alternatives that I can and that seems to help.

We do have a problem with her sandwiches in that one of her friends said her bread is weird and now she won't eat it at school. I just send her with meat and cheese and no bread now (cheaper that way too).

I find other parents have been great when it comes to birthday parties. Usually I send her with her own mini cake and she eats that. I also try to find out what the main dish is and send her with the same type of food that is gluten free (i.e., pizza). At the last party she went to, the mother knew Sierra couldn't have the cake, so they didn't have one and got everyone sundaes from Dairy Queen instead. My daughter was over the moon that she was eating the same as everyone else. For her own birthday, I had a gluten free cake for everyone to eat from a bakery that makes everything gluten free. It was great and I enjoyed it just as much as any regular cake that I eat.

I also try to bring desserts and such to gatherings that she can eat, I make sure to put some aside for her before it gets put out pot luck style.

Hang in there, your kids will likely adjust easier than you will (I know mine did).

jmjsmomma Apprentice
jmjsmomma
Posted

I agree with Rondar's post. My 5 year old has had, quite literally, few issues....it has been harder on me than him :o) I am very fortunate with him though, he really is so easygoing about food. As long as he is getting something equal to what is being served than he could care less. He'd rather have a candy bar than birthday cake. Most of my kids friends parents have been AWESOME about it too. I think you have it much harder with a younger child. At 5, mine is old enough to understand that food is just fuel and that gluten makes his belly hurt so he has zero desire. On the flip side, as he gets older, he'll never remember the gluten food!

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

My son is going through some challenges at school right now. It's the end of the year. He is on student council and they are having the last meeting of the year at a local pizza place. My son doesn't want to go because he won't be able to eat anything and he doesn't want to sit there and watch everyone eat pizza (I don't blame him). I am upset seeing him so heartbroken. I am also angry at the student council sponsors (teachers) for having the last meeting at a pizza restaurant. Of all the places they could have chosen, they choose a place where my son can't eat a single thing on the menu.

The Kids Folks Apprentice
The Kids Folks
Posted
My son is going through some challenges at school right now. It's the end of the year. He is on student council and they are having the last meeting of the year at a local pizza place. My son doesn't want to go because he won't be able to eat anything and he doesn't want to sit there and watch everyone eat pizza (I don't blame him). I am upset seeing him so heartbroken. I am also angry at the student council sponsors (teachers) for having the last meeting at a pizza restaurant. Of all the places they could have chosen, they choose a place where my son can't eat a single thing on the menu.

You might want to check with the pizza place. My son's hockey team was having their party at Davanni's Pizza (even though the coach knows that he can't eat gluten). Anyway I checked with the Davanni's and then gave me a list of things that are gluten free and even said that we could bring in our own crust and they could top it for us! We've found a lot of places to be very accomodating.

Now if we could only get my son's friends to stop offering him food at lunch time. He is in second grade and the boys all seem to think that they are some sort of food investigators that can "tell" by looking at it if it has gluten in it! YIKES! On that, I have had to make a couple calls to the parents to explain the whole wheat/gluten intolerance to them so that they can talk to their kids about it.

buffettbride Enthusiast
buffettbride
Posted

Pizza parties, birthday parties, banquets, etc. are always such a pain in the you-know-where. Thankfully our extended family has been very understanding and considerate and we have very few problems at family gatherings (which happen for us at least monthly).

My daughter is older (11 now, was diagnosed at 9) so I never had to deal with it with her as very young child, which I can only imagine is 10 times harder.

I have had a lot of luck calling places in advance or talking to the mom hosting a party. Usually they are very understanding and are willing to grab a bag of chips and ice cream that my daughter can have when she has to miss out on the other yummies.

When there are pizza parties at school we order her a gluten-free pizza from a local pizzeria. Kind of expensive, but it does the trick. We recently had a banquet for her theater group and the hotel caterer was happy to serve a grilled chicken and rice dish for the gluten-free eaters and even served ALL the salads without croutons for the entire banquet.

I've found that having a good attitude, being proactive, and a LOT of advance thinking and planning takes you very far with this disease.

There are still disappointments along the way that are impossible to avoid, but usually remedied by a special ice cream trip.

The social challenges of this disease are by far worse than the actually dietary challenges. But, in return, I have a much happier, healthier child.

SHEFFIE77 Newbie
SHEFFIE77
Posted

My daughter is just turned 10 and was diagnosed 2 1/2 yrs ago.She was diagnosed with type 1 diabetes at age 6 and it was a huge adjustment but,celiac disease made it 10 times harder.From day 1 of diagnosis, she has been sooo strong.

Just dont ever leave room for your child to feel sorry for them selves.keep stronge because they pay more attention to your reaction than what they have lost.

Our whole family went Gluten free about 10 months ago because, it was so hard to gaurd against cross contamination.when we saw our daughter in pain, food no longer seemed important. we still eat away from home but,nothing comes in the house.Since doing this she doesnt fear grabbing the wrong thing or cross contaminating her food.Our oldest daughter is 11 and she has come to live with the diet.she had a pitty party for herself but,come to realize she has her health and doesnt want to see her sister left out; :P most of the time.

With the challenges of carb counting and a gluten free diet ,She no longer gets upset when we get something to eat away from home because she has free run of her home,its her safe place.since everything is gluten free .

We do take her out to a couple of her favorite places to eat,after coming to know the manager and the head cooks.they go way out of their way to provide a safe meal for her.if we go through a drive thru or she goes to a party,we make it a point to always get her ice cream as a special treat or have her favorite snack with us and, she gets to choose what we have for dinner,(and of course dessert),lol. :lol:

During the holidays and special events at school,she chooses her favorite meal or snack,and we bring it from home.

our family has been a god sent, with all of her chronic health conditions.we have to make alot of alterations in our lives due to many health concerns.

When your babies"no matter how old they are" dont feel well,what use to be important suddenly has no meaning.

I hope your baby has great success in life.your children are stronger than you could ever imagine.Dont back down to anyone who tries to tell you not to fight,especially the schools.Make them FIGHT for your childs rights and keep them safe. good luck to all of you.

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  • Recent Activity

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