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My 2 Yr Old Daughter Just Diagnosed Last Week With Celiac

Nikki2003

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Nikki2003 Contributor
Nikki2003
Posted

Hi everyone, My 2 yr old daughter was just diagnosed last week with Celiac disease via biopsy. When the dr did the endoscopy she said she didn't see anything abnormal but you have to wait for the results. But it came back that she does have it. So we started her on the gluten free diet last saturday. It is tough findind stores here that have a good selection. But were dealing with it.

Anyway that's about it for now.

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jerseyangel Proficient
jerseyangel
Posted

Hi Nikki--welcome to the board! :)

You've come to the right place! There are many moms and dads here who have lots of experience with Celiac and the gluten-free diet.

Be happy that you found out at an early age that your little girl has this. By going on the gluten-free diet now, she will avoid a lot of the complications that can happen with a delayed diagnosis.

AndreaB Contributor
AndreaB
Posted

Welcome Nikki. :D

What area of the country do you live in? There may be people in your state that can suggest stores to find gluten free food at.

happygirl Collaborator
happygirl
Posted

Hey Nikki,

Welcome to the board! This is a great resource. Most people on the board know more than most doctors about Celiac. Unfortunately, Celiac is highly un-diagnosed and often mis-diagnosed, and doctors have very little education about the disease and its effects. Luckily, this board and celiac.com provides a resource for questions and answers about foods, gluten free living, recipes, and current research!!!

Just wanted to give you some of my favorite foods/brands:

Tinkyada gluten free pasta (all kinds, including spag, penne, elbows, etc) Use this to make all our pasta dishes, including mac and cheese (with velveeta-yummy!)

Kinninnicknick (can never spell it right!) pizza crusts and bagels

Many McCormick's brand seasoning packets are gluten free---they are very good about clearly listing any wheat/gluten, barley or malt in their ingredients.

bob's red mill gluten free flour mix

Even if the ingredients are gluten free, you will need to make sure that it is free from cross contamination. For instance, all condiments that are dipped into, like butter, mayo, etc. If someone makes a sandwich and dips the knife back in, the butter/mayo is now contaminated and is not gluten free. We have separate condiments in our fridge. If you are serving a gluten free dip for veggies, and wheat crackers are dipped into it, that is now not gluten free.

Even if symptoms do not immediately (or ever!) appear, that does not mean that an auto-immune reaction is not occurring. Many Celiacs are "silent" Celiacs, meaning they do not have any outward symptoms, yet their intestines are being damaged by gluten. On the other hand, there are Celiacs that are extremely sensitive and have outward reactions to minute amounts of gluten.

Anytime you are looking for something, feel free to ask or PM me. Your daughter is lucky to be diagnosed so early and a caring family to support her with gluten free foods!

Good luck!

Laura

Jodele Apprentice
Jodele
Posted

Hi Nikki

Welcome to the board. Glad you found the site. I found out lots of great info here and such a great support to have with all the loving people here. :wub: My oldest dd has just been dx with glutton intolerent but I know she has celiac but her biopsy came back neg. We are going gh just after myself and the rest of the family gets a blood test done. Emily my oldest is going gluten-free today.

Nancym Enthusiast
Nancym
Posted

I can't help myself...

glutton intolerent
I'm usually tolerant of gluttons, glutens though is another issue! :D But my brother likes to tease me and say I'm a gluten for punishment.
Nikki2003 Contributor
Nikki2003
Posted
  • Author

Sorry I didn't introduce my self. My name is celina and my daughters is nikki. Sorry about that. We live in Massachusetts. She is seeing a pediatric GI doctor out of Children's Hospital in Boston,ma.

Thank you all for the great tips.

I was wondering how likely is it that she can get other autoimmune disorders?

A few weird things have happened in the past few weeks.

I noticed she started with a blushing like rash on her cheeks and across the bridge of her nose,I think it is a malar rash. She has never had this before maybe just on her cheeks but not her nose and only when she was playing outside alot. It first appeared when we were stuck in the house for 4 days with no sun,because of all the rain. It is not dark when we are inside but light pinkish. But when she is outside for about 5 minutes it get's darker,But even when we have been inside for a while it is still there just not as dark. Like I said this started a few weeks ago,nothing before that.

When she gets a bug bit on a joint in her body it swells uncontrollably it gets very swollen and very red,but doesn't hurt her. This has happened on a few occassions. But when she gets a bite on the middle of her arm or a non joint it is fine,It does nothing.

Sorry for all the questions but we are new at this.

Thanks

Celina

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    • Deborah123
      Testing

      By Deborah123 · Posted

      My 5 year old had the blood test in August 2023, which came back negative.   We just had a well-visit & he has lost weight over the last 6 months.  My new Dr thinks its ENT issues causing his irritability & fatigue.  We recently switched pediatricians, and I'm not sure how much to push for a celiac re-test.  Obviously I'm not a Dr, but my gut feeling here is to re-test.  How common are false negatives & how much should I be pushing my Dr to prescribe a re-rest?   
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