Top 10 Things to Know When Your Child Is First Diagnosed With Celiac

Just Diagnosed! Help!

I remember the diagnosis like it was yesterday.  I remember the fear, the anxiety, the millions of questions.  I remember feeling like I could not handle this, my children will be outcasts, and somehow I will make them more sick.

Funny thing is…I have not made them more sick…in fact their numbers are finally in the “normal” range.  Have I messed up a time or two?  Absolutely.  But we dealt with it and moved on to happy smiles and regular life.

So if your child was just diagnosed (or maybe it is you seeking answers…) – here are 10 things to ease your mind and get you started on this amazing journey!

Number One:  It is going to be okay.  Your lifestyle will change, it will feel scary and foreign, but you will be just fine.  It IS doable!  You will get it down in no time – and everyone will *literally* start feeling better.

Number Two:  Do the biopsy.  You will forever wonder if you do not do it.  Do the biopsy for peace of mind and for definitive answers.  It will also give you an insight to how sensitive your child may be to cross-contamination.  Now with that said…keep this in mind…IF you are already gluten free and doing the biopsy means putting your child on gluten for 6 weeks and making them feel absolutely horrible…the blood work should be enough to ease your mind.  There is no reason to subject your child to that.  BUT…if the biopsy can be done in a decent amount of time and you are not gluten free yet, by all means do it.

Number Three:  You will be able to eat out again.  The app “Find Me Gluten Free” will become a huge tool you will use.  Your ordering style will be different because you will now have to inform the wait staff and ask a lot of questions, but that is okay.  Call ahead of time before you go to a new restaurant, and ALWAYS talk to a manager.  I still talk to a manager at most restaurants, even if having been there numerous times.  Also, telling the wait staff it is a severe “allergy” (which it is not) versus “celiac disease” helps them understand the severity better.

Number Four:  There is gluten in SO MANY THINGS!!  Obviously it is found in food, but also in lotions, shampoos, sunscreens, medications, makeup, art supplies (which must be addressed if your child is of school-age) and so many more.  Calling companies directly to find your answers about their product is important.  I have been known to call company after company while standing in my local Target or Walgreens just to make an informed decision.  Plus…sometimes when you call…they will send you free coupons!  SCORE!

Number Five:  Your child (or if you are reading for yourself) – WILL get “glutened”.  It is inevitable.  Of course you will always do your absolute best not to have it happen…but it will happen.  If your child is has celiac and you do not (like myself), DO NOT beat yourself up if you gluten your child.  (Yes, I know…easier said than done – and trust me – I have glutened my child a couple times).  Please know it is NOT your fault, your child will be okay.  You are not a bad parent.  You love your child wholeheartedly (that is why you are here in the first place) and you are doing your best!

Number Six:  Get a bread maker.  Gluten free bread is EXPENSIVE.  I have a great bread recipe I can share with you that tastes great.  You also do not have to buy one that has a “gluten free” setting.  I have yet to use mine.  BUT…you can also purchase bread at Costco.  I have learned not all Costco’s carry Udi’s Gluten Free bread (that’s what we eat and my kids love).  So check around.  We do not have an Aldi’s near us – but if you do…I have heard their gluten free bread is good and it’s not too spendy.  Check them out!

Number Seven:  You can order your flour from Amazon.  It will be cheaper and you can find packs of four (if you use Bob’s Red Mill…which is my favorite).  I personally will only order from Amazon but you may be able to find some at your local Whole Foods, Trader Joes or Aldi’s.

Number Eight:  Your favorite recipes can still be made!!!  You will just use a different type of flour and Xantham Gum!  I have a conversion chart you can use!

Number Nine:  Gluten Free Barilla pasta actually tastes better to me than non-Gluten Free Pasta!  I find mine in my local Safeway.  I just had a guest two nights ago that said they also though the gluten free pasta from Barilla tasted amazing!

Number Ten:  Get Vitamin Labs drawn (ferritin, Vitamin D, Vitamin B12, Calcium, CBC, Tissue transglutaminase (Celiac testing), Folic Acid, WBC, etc) every three to six months.  You need to make sure you are not deficient on anything and that your celiac is responding to a gluten-free lifestyle.  There are times you may need to cut out other products (dairy, etc) as well.

I am always here to help you out and answer any questions you may have!  Feel free to email me or comment below!

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