Where To Start?

[Stacie222]

Hi everyone, my name is Stacie. I have 2 daughters my youngest is 5. For a few years now I knew something wasn't right with her, but her doctor said she is fine, she is just little. I always felt in my gut that there was something going on. I finally got him to listen and blood work started. Yesterday we got the news that she had celiac disease. While I am happy to finally know what was wrong,(not that I am happy she has this) I am overwhelmed with all of this. We start seeing a GI doctor and they are going to do a biopsy on her SI to see how much damage has been done. My question for all you awesome moms dealing with this is where do I start? I feel so much stress right now. What are things that helped you the most and what are some questions I should be asking the doctor? Thank you all so much for your help!

[bartfull]

Start here: https://www.celiac.com/forums/topic/91878-newbie-info-101/

[mamaw]

Hello &Welcome

 

Have you &   other  family members  been tested? if not  please do  that.....I'm  the  founder  of  a  gluten free  group  if  you  would like to  pm  me  I'll be glad to help  you......we  have  many  young  people  within  our  group.....both  our  grandchildren  started  gluten-free  at  an  early age....., they are  happy  &  in high  school now.....

[africanqueen99]

Hi Stacie - I'm Angela.  Man alive, I so remember that feeling of "What the hell am I supposed to do now?!" along with "Thank god we finally know what to do now!" 

 

I know it feels like such a huge change of life, but you'll get through this - just like we all are.  You are going to have to overhaul a lot, but the good news is that the learning curve is pretty high and you'll eventually get to the point that you just *know* what you're doing!

 

My journey started with a DX for a non-verbal toddler.  Her only clues of being glutened were blood curdling screams and foul poo.  Oh, the joy.  Which lead to the DX of a 7 y/o that loved pasta of all forms more than anything.

 

Because the DX process takes some time between blood work and biopsy I used that time to make a list in my kitchen of everything I needed to replace (toaster, cutting boards, plastic/wood/silicone anything) and started buying new.  I left everything in the dining room until I was ready for "the switch!"  Then I went through the food - anything not opened went to the food pantry, anything opened went to friends or the trash (think critically - condiments/spices *may* have been touched with a dirty gluten spoon so they were pitched).

 

Literally the day after the biopsies I SCRUBBED the kitchen (probably the cleanest it has ever been) - cabinets, doors, drawers, fridge, pantry, etc.  Minutes before I scrubbed I boxed all the bad stuff and out it went to the garage.  Once everything was clean I opened my packages and had a new kitchen.

 

About a week after I had the kitchen clean I moved into beauty products - shampoo, conditioner, soap, toothpaste, leave-in conditioner, chapstick, lotion, make-up (yes, I only use gluten-free make-up b/c I don't ever want to stress that one my kids will touch it), etc.  Then the medicine cabinet (would you believe I had to throw out every single oral medication?!).

 

My route was to not overwhelm myself so I was slow and methodical.  I didn't want to miss ANYthing.

 

Now I'm in a good place and only allow two gluten items in my house/car - beer and my husband's shaving cream.  That's it. 

 

My suggestion would be to make a plan.  Just jot things down right now that you want to ask the doctor then you can organize later.  Do the same for your house - do you want a gluten-free house or will you still allow gluten?  Think about how you will keep your daughter safe and then what it will take to get there.

 

And we are a great group of parents - ask anything.

[nvsmom]

Welcome to the board.

I agree that one of the first steps should be testing the rest of the family... Just in case.

Re-reading all labels is the next step. Soups, bullion, spices, condiments, sauces (soy, teriyaki, worchestershire) and mixes should be checked for gluten. Baking supplies that could have been contaminated (like a flour covered measuring cup dipped in the sugar container) should be gotten rid of. Things like butters, jams, peanut butter and mayo that could have bread crumbs in it are a source of contamination. It takes a few hours to go through it all.

A bunch of gluten-free treats, are a nice way to start the gluten-free life.

Best wishes!

[Cara in Boston]

Also, check in your area to see if there is a Celiac Support Group.  Ours (Boston) is wonderful and they welcome you by sending out a big (very big) box of gluten-free treats.  My older son was actually jealous that he didn't have Celiac when the box arrived for his brother.  They also plan events for kids and discussions/lectures for parents.

 

Get everyone in the family tested.  This is how I found out I had celiac too.

 

Ask around (this list is great) for suggestions for replacements for your favorite foods.  There are so many options out there now, if you have some recommendations, you can skip the bad ones.  Once we got comfortable, we found we were using less and less of the gluten-free processed foods and just gradually switched to a more naturally gluten-free diet.  

 

Get a 504 plan in place at your child's school.  Our school was very accommodating so I didn't think it was necessary (and it really wasn't in the beginning) but if you get it in place now, it will be easier as your child gets older and navigating school becomes more challenging.  There are some good examples on line of what you might put in your 504 plan.

 

In the beginning, Joe HATED when I made a big production about keeping him safe when we were out of the house.  I found it helpful to do my "questioning" in advance (go to the ice cream store alone and see if they are "allergy friendly" - open a new carton for you . . . wash the scoop in between customers . . . etc.)  then go back with Joe.  I would then just inform the server of our needs (so Joe could learn how to do it himself) and I could feel comfortable with their serving technique.  Nothing worse than getting excited about going somewhere and then deciding that it is not safe and leaving.

 

At this young age, be sure you are checking things together so she learns what to look for.  Joe is now almost 9 and for the past two years I have completely trusted him to check stuff when I am not around.  We do have a rule though . . ."when in doubt, leave it out".

 

We also found some good books at the library that were helpful.  One was about being a "gluten detective" (or something like that) and others described how kids could tell their friends and classmates.  Your librarian should be able to help with this.  

 

It DOES get easier with time.  Now it is just a way of life.  No big deal.

[smilla]

It gets easier and less expensive with time. We spent a months pay just on food in the first couple of weeks after diagnosis. There is a lot of trial and error as you try all the gluten-free alternatives. We are 18 months post diagnosis and everything feels pretty normal again. Except no takeaway. And that's probably a good thing. It is a huge adjustment but now it is just life as ususal for us. I think we are all eating healthier as a result of having to be mindful of our food, but we still let ourselves be slack and give them baked beans and microwaved cheese quesadillas sometimes.

[smilla]

I also just borrowed every book from the local library on coeliac. The one I found the easiest to read and understand in my frazzled state was:

"The First Year - Celiac Disease and Living Gluten-Free" by Jules Dowler Shepard

[smilla]

And watching your daughter's energy levels and wellbeing improve will keep you motivated. It's just magical to see the improvement, but even this takes time.