Overwhelmed Mom Of Celiacs

[CeliacMommaX2]

I think this may just be a venting post.... I hope that's okay. 

 

We are just a month into my daughter (4 1/2)  being diagnosed and are exploring further if my son (3) has it too (+ blood work, - biopsy).  I'm terrified of going anywhere or doing anything.  I worry that my kids are going to accidently get gluten somehow and I have become a recluse!  I just want my daughter to be able to heal and for my kids to be healthy.  How long will it take before she is feeling better and for me to know how sensitive she might be? 

I'm overwhelmed with cooking for kids who are picky eaters and are now gluten free too.  I keep having people telling me how great it is that restaurants have gluten free menus now and even the pizza place in town makes a gluten free pizza, but I don't think I can trust that and I don't know how to get people to understand it when I don't exactly understand it myself yet! 

 

I'm glad I've found this forum.  I hope I can quicly grasp how to live life as a celiac for the sake of my children.  I just want them to thrive and live life to the fullest!

[beth01]

I know gluten can be scary, and it's a scary thing when our children get sick, one thing you can't do though is live your life in a bubble.  Celiac is a one day at a time sort of disease.  Most children do wonderfully once on a gluten free diet.  Most haven't had the chance to acquire all the other crap that goes along with being undiagnosed for years and years at a time.   Children bounce back quick.

 

 

School:

 

I see your daughter will be starting school in the fall, learn about 504 plans.  Do a search on this site, and if you can find some posts from the last 12 months, I know there are some discussions about 504's and someone even posted a rather detailed one that they use, I used it when I wrote up my daughter's for school.  The 504 plan is a plan set for children with disabilities, something that the school and the parents discuss so everyone knows the child is being properly cared for at school.  I don't have the schools provide lunch for my daughter, she takes cold lunch every day.  It works well for us.

 

Going out to dinner: 

 

  Call ahead.  If you hear of a place that offers gluten free, call and ask what there practices are for preventing cross contamination ( using separate prep area, ingredients, utensils, cooking space), what are usually their slower nights ( you don't want to walk in on a busy Friday night when it's crazy), ask if any of the servers are more familiar with gluten free. If you don't feel comfortable with the answers you get, don't go to the establishment.  I personally have a hard time going to some place that serves pizza, subs, or a fast food Mexican place, there are way too many avenues of cc.  But, that is my personal opinion.  There are a couple of places in my town where there are either Celiac owners or servers, those are the ones my ex takes my kids when they go out to eat.

 

Sleepovers:

 

I call the parents when my daughter is invited for overnights.  I talk to them a little about her disease, and explain her limitations food wise.  I always offer to send food, and always ask if there is a substitute treat I can send for her if they are having treats she can't have.  One girl's parents got a gluten free cake from the bakery, I thought that was sweet.  I also let the parents know that they can get a hold of either my ex or I if she happens to get sick.  I haven't had a parent yet not want her over.

 

 

Home:

 

I have been able to substitute all my previous recipes for gluten free.  It takes some tweaking, but it works. There are also tons of gluten free recipes online, and Youtube videos as well.  Mistakes happen, we learn from them.  Ask lots of questions, there are lots of people that can help answer them.  It's so overwhelming, but it gets easier.

 

Good luck!

[cyclinglady]

I hear you! My daughter does not have celiac disease, but hubby and I both do! I feel like I have been cooking forever! Plus, we work from home. I am akin to Ma Ingalls and cooking three hot meals per day (luckily not in a wood stove).

One month is is tough. It will get easier, I promise. And you are doing the right thing by avoiding restaurants until the kids are feeling better. Eating out is risky every single time! Take those risks later when you are less overwhelmed!

I tend to cook in big batches and freeze for those days I do not want to cook. Our fast food is a Costco Rotisserie Chicken and a bag of salad. My best investment has been my 17 cu/ft freezer. In it, are meats and fish all purchased on sale , bags of veggies, gluten-free flour (to keep fresh), butter, old milk catons of frozen water (ice blocks), casseroles, bread, cupcakes, ice cream cakes, brownies and cookies. Going to a party? I can grab some gluten-free cupcakes and we are not left out when cake is being passed out.

Another good investment is a five day cooler and a couple of smaller ones. I even have a cute cooler "purse" that I can bring in and eat with friends while dining out. Yep, right in the restaurant. No one has ever challenged me. We tailgate many meals while visiting museums and theme parks. Packing a picnic is fun. My folks did it all the time as we could not afford to eat out in restaurants. My mom was always looking for a nice place to stop and picnic. That was a standing family joke! She also could put together a lunch in the "way back" of our old station wagon using our trusty metal Coleman ice chest (the days before seatbelts).

Do not become a recluse! Invite friends over for tea/coffee, gluten-free snacks and cake. Meet with friends at the park and bring snacks. The kids will love it. It is unfortunate that our society is so dependent on food for socializing and restuarants are so plentiful. But that is the way it is.

I hope this helps.

[nvsmom]

This is the perfect place to vent.  Those first few months figuring it out are very hard.  It usually takes two or three months to get comfortable with the diet, and to find new brands and recipes that work.  You'll get there eventually.  By the time the fall rolls around you will be a pro.  

 

Celiacs heal at different rates.  Some lucky ones feel better by two months gluten-free, whereas most need a good 6 months, and another few need years.  Hopefully she'll feel quite a bit better this summer.

 

A celiac's sensitivity really refers to how severe her OBVIOUS reaction to gluten is - IMO.  Some will say they are sensitive because they are vomiting within the hour of being exposed, but that doesn't make them more sensitive to someone who becomes anemic from gluten exposure.  It's just different symptoms.  

 

Assume that any exposure to gluten could make her sick.  All it takes is a crumb.  Knowing this, it will not be safe to eat at most restaurants, even ordering fries (which should be gluten-free) could make her sick if the oil used was previously used on something with gluten like onion rings or chicken nuggets.  I would not trust a gluten-free pizza from a pizza place unless it came in a sealed bag, that was not prepared thee, and cooked without touching anything that the regular pizzas do; Chuck E Cheese does this, but I don't want to spend the money eating what is essentially a frozen dinner served by a restaurant.  

 

The same goes with eating at other people's homes, most will not "get it", and will not be able to keep her safe.  Like the others said, bringing food is by far the safest option.  Unfortunately it means that you won't get many breaks from cooking.

 

Get good coolers and prepare to bring your food out with you.  It really is the best way.... just a hassle.  

[StephanieL]

Be prepared.  That's really the key in dealing with food issues.  This means having food and cleaning supplies with you at all times!  I'm sure you know kids snack all the time.  Just be ready for it and ready with hand wipes if no hand washing facilities are available.  Washing hands OFTEN is a great thing to teach them too. The cleaner the hands, the less likely it is to be gluten.  Also, once she has healed up, it is VERY uncommon that a crumb here and there will make her sick.  Very uncommon.  I wouldn't worry about that. I am not saying to be reckless but it really helped me get things under control when I knew a crumb here and there won't be the end of the world.  There are many places you will be able to eat if you are mindful and prepare in advance.  Call.  Call again.  Check web sites. Check online reviews and so on.  It's not impossible to eat out. 

 

School is another dealing you'll have to encounter but I wouldn't worry about that just yet.  One thing at a time. 

Lastly, you kids aren't Celiacs.  They are kids.  They are kids who may have Celiac disease but they are NOT the disease.  People in this community seem to want to be their disease and refer to themselves as "Celiac".  That's such a small part of what and who a person is and I would not want you kiddos (or anyone for that matter) be BE their disease.  Would you call someone with cancer a cancer?  Sounds silly, I think. They are your kids. Your amazing, smart, funny, wonderful kids!  Who HAVE Celiac disease.

[mamaw]

All great advice  has been  given.......I just  want to say  your  kids are  very  lucky to have caring  parents, not  all kids  have  this  luxury...some parents  just  don't get  it  or  truly care... sad  but  true....

I do have a  question....... have  you & hubby  been tested as well?

To make  things at  home  a  bit  easier have  you given thought  to an all gluten free  home? This  also  encourages  the  kids ....they  will learn  to  own  their  illness & not  the disease  owns  them...Our kids  now teenagers  have  been gluten-free  since age 2 1/2....in  elementary school  I made  /matched  every  birthday party, holiday parties, &  school classroom snacks....for 

 7  years for two  kids... we also  had  lots  of bonding  times  making  cute  things  out of their  food...sandwiches  turned  into  an animal with the  help of  cookie  cutters, pancakes  made  into hearts for valentines  & so on...

When  school  time comes  your  way  , make  an apt  with the  principle, nurse,  cafeteria  staff ,  &  guidance  counselor ( if  they have  one)  do  this  in the  summer a few weeks/month before  school  begins.... celiac  disease  is   covered  under  the  disabilities  act....I  can  say  in  grades K -6  we  never  bought  lunches  it  was  just  as  easy to bring  from home &  have  an adult  heat  or  micro  the gluten-free  food  if  it  needed  to be  heated...bento  boxes  are  sweet!  We  would  send  gluten-free  chicken nuggets,  pizza,  soup,  mac & cheese  to name  a few  things...  for  parties  we  were permitted to  have use  of  a  fridge  & freezer... I kept  ice  cream, ice  cream  sandwiches,  cookies,  cupcakes made  from home  at  school so  when a party  happened  all the  teacher  had to do was  set  out  the  item  in the  am....When the  PTA  put on a  party  they  sent  home  a  note  with  what  they  were serving  & I matched  that  ....

You will do  fine  ,  just  take  your  time & learn as you go....

[CeliacMommaX2]

Thank you for all of your wonderful replies!  I will be sure to keep a stash of meals & treats in our freezer.  Luckily we have a big chest freezer that's close to empty now that I've given away all of our "gluten food".  TIme to invest in a good cooler!  Any tips on snacks I could have on hand for them in the car that don't need refrigerated?

 

I appreciate the reminder that they are "kids who have celiac disease" and not "celiacs".  That's a good reminder to treat them as my wonderful kids they have always been first.

[mamaw]

snack ideas: fruit , pretzels, corn chips, crackers & peanut butter, popcorn, cheese, M&M'S , raisins, applesauce.. jerky, rice cakes..... their is a lot of junk food!!! But they are kids!!!! our kids love yogurt. banana boats with nutella spread on.... dice ham & cheese with crackers or chips....just make sure all is gluten-free....

The kids will be fine it is the parents who go crazy with worry....been there done that!!!!

To get kids to eat other foods besides junk food make penguins out of carrots & black olives...

celery with cream cheese or peanut butter add raisins for ants on a log...