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Feeling A Little Overwhelmed
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8 posts in this topic

Sorry if this is long...

My 20 month old daughter has been in and out of the hospital for a total of 9 days the past 2 weeks.

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I am so sorry you are dealing with this.

Celiac is genetic. You have the predisposition to have it and it has to be turned on by something. Stress, illness or something. With her TTG that high, it isn't this illness that brought it on I would think.

If your Dr. is wiling to diagnose her without an endoscope (which is becoming more common) that's great! There are new guidelines for diagnosis and the "gold standard" of endoscopy isn't the gold standard any more. So this is really good news.

The rest of your family should be tested. As I said, it's genetic. Parents and siblings should be tested and if the parents are positive, their relatives should be tested.

As for the most important part... Feeding her. We deal with a lot of food allergies so my list also has those constraints one of which is dairy free.

Staples in our home:

Lots of whole foods- fruit, veggies, meat, potatoes, rice

Chex-rice and corm

Gluten free rice crispies

Cherrybrook Kitchens pancake/waffle mix

Ian's foods (nuggets, potato shapes, french toast sticks)

Mary's Gone Crackers (for snacking and to make breading for chicken and stuff)

Edwards and Sons Rice crackers

King Arthur's Gluten free flour blend!!!! LOVE this stuff. The best flour I have worked with (we've been at this for 2 years)

Coconut milk and yogurt

Rice milk

Enjoy Life foods- chocolate chips, cookies, fruit mix, Plentils (a chips/crisp kind of snack)

I have to run but here's a start.

Hugs and hang in there Mama!

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Welcome to the board.

The good news is that she is young and starting the diet early will make it so much easier. Imagine being a teenager and suddenly not being able to eat your favorite foods! When they are this young, you are completely in control of what your child is eating. Once you make the transition, it will be all she knows.

They make gluten-free toast, waffles, etc. - EVERYTHING.

When we started, (son was 5) we first found substitutes for his favorite foods . . . but after a few months, we started phasing them out in favor of naturally gluten free food. This is not only healthier (no real nutrition in the processed gluten-free foods) but better for our family budget.

Strangely, my super-picky eater is now the most adventurous eater in the family.

I tested positive after my son was diagnosed - I had never even considered a food sensitivity! So many pesky "issues" cleared up for me once I went gluten free. It was amazing.

Our house is gluten free (just easier to prevent cross contamination) but my husband and older son will eat gluten when they are out. For the most part, we are all eating much healthier.

Keep coming here for ideas and recipes. It can be overwhelming at first, but it really does get easier.

I would look into getting her a bracelet to help remind any other adults that might come in contact with your daughter.

https://www.statkids.com/store/index.php?cPath=22_32&osCsid=a0e10f1de382ce489db4460090508a8a

Get the rest of the family tested - even if no one has any symptoms.

Cara

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I am so glad you found out early in her life. I hope she will heal soon. The diet should be just what she needs. You will find foods she will enjoy. They will do her good. You have come to the right place to find some ideas for food.

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Thank you so much for your replies! I got tested today and we have an appointment next Monday with a different pediatric gastro doc.

I've been doing a lot of research online which has calmed me some. I feel much more confident in moving forward with this than I did just a few days ago!

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Our stories r do similar, my 21 month old just went through 2 months of hell! Docs kept saying it was a virus...I didn't believe him as I watched him getting sicker and sicker. A week before getting results I took him of gluten and he improved overnight, literally- his constant diarrhea stopped! He got a postive diagnosis from blood work and has been gluten and dairy free for only 2 weeks now and SO MUCH BETTER! Happy again, has energy, regaining motor skills and gaining weigiiht. I started slow with rice cakes, noodles and potatoes....added in meats, fruits, chexs, gorilla munch...something new everyday and he is enjoying eating again, all day! I'm supposed to get endoscopy next week and don't want to, I have such little faith in doctors now - they missed a major diagnosis while encouraging me to poison my baby...so thankful I followed my intuition and was persistant. We have so much in common, feel free to email me @ 4jreid@gmail.com if you want to compare notes.

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HI,

It's good to know what the problem is! Here are some threads that might help.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

http://www.nature.com/ajg/journal/vaop/ncurrent/full/ajg2012236a.html

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Our stories r do similar, my 21 month old just went through 2 months of hell! Docs kept saying it was a virus...I didn't believe him as I watched him getting sicker and sicker. A week before getting results I took him of gluten and he improved overnight, literally- his constant diarrhea stopped! He got a postive diagnosis from blood work and has been gluten and dairy free for only 2 weeks now and SO MUCH BETTER! Happy again, has energy, regaining motor skills and gaining weigiiht. I started slow with rice cakes, noodles and potatoes....added in meats, fruits, chexs, gorilla munch...something new everyday and he is enjoying eating again, all day! I'm supposed to get endoscopy next week and don't want to, I have such little faith in doctors now - they missed a major diagnosis while encouraging me to poison my baby...so thankful I followed my intuition and was persistant. We have so much in common, feel free to email me @ 4jreid@gmail.com if you want to compare notes.

:) Hi tommysmommy...

So glad things have turned out well for your child! Just wanted to make a friendly suggestion, you might want to edit your email address out of this post and send a private message to the OP instead. There are harvesters scouring the internet (especially forums like this one) for addresses and you may find yourself starting to get tons of terrible stuff you don't want to see!

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    • I havent used it, not much of a baker tbh, but this one looks good: http://alittleinsanity.com/gluten-free-pie-crust-recipe/
    • As you say, there's no test, it's diagnosed by exclusion, so there's no metrics to check to assess compliance other than anecdotal response to symptoms. Conversely, I've not seen anything that says that NCGI can resolved or be cured either.  This paper gives a good summation.  Basically, there's not much research period! That is changing though, I think there's research underway which could help give answers.
    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
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