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Feeling A Little Overwhelmed


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7 replies to this topic

#1 Logiesmom

 
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Posted 15 August 2012 - 03:26 AM

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.  She was vomiting once (sometimes twice) a day, sleeping ALL the time, and just completely lethargic when she was awake.  She became dehydrated which was the original reason for admission to the hopsital each time.

She also has ulcers in the back of her throat which she has had for about 2 weeks now, which they originally diagnosed as HFM.  She was given an Upper GI on Saturday where they saw some slight reflux and she was prescribed Omeprazole.

FF to yesterday.  Doctors come in and repeat that they believe she had some kind of virus and possibly another virus on top of that that made her so sick.  They suggested she avoid lactose for a short time while her stomach lining heals.  They walk out and then in walks the GI saying her Celiac panel just came back and it was positive for Celiac. 

He asked if we wanted to just go Gluten free or do an endoscopy. I was caught totally off guard and he didn't stay very long after I declined the Endoscopy.  He said he would get in touch with the dietitian, who met with me before we left.  I have an appointment for a second opinion but that is not until the 27th. 

I'm just baffled because all she eats really is toast, pancakes, waffles, and dairy.  She has never been sick before this bout of illness.  She is 75% for weight, 50% for height (she was born a big baby 10lbs 9oz).  The only test result I got was her Tissue transglutaminase antibody IgA result which was 131.  Is it possible for Celiac to just sort of show up without her seeming to have been affected prior to this?  

Are there other tests I should request or is the one she had sufficient?  I do not want to put her under anesthesia unless it is absolutely necessary. 

Thanks in advance!

Nicole
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#2 StephanieL

 
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Posted 15 August 2012 - 05:07 AM

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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#3 Cara in Boston

 
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Posted 15 August 2012 - 05:31 AM

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...db4460090508a8a

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

Cara
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#4 1desperateladysaved

 
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Posted 15 August 2012 - 05:42 AM

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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#5 Logiesmom

 
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Posted 16 August 2012 - 05:37 PM

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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#6 tommysmommy

 
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Posted 21 August 2012 - 09:15 PM

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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#7 GFinDC

 
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Posted 22 August 2012 - 10:04 AM

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.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

Dessert thread
http://www.celiac.co...399#entry802399

Easy yummy bread in minutes
http://www.celiac.co...ead-in-minutes/

How bad is cheating?
http://www.celiac.co...t-periodically/

Short temper thread
http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article
http://www.nature.co...jg2012236a.html
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#8 beachbirdie

 
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Posted 22 August 2012 - 11:38 AM

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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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012




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