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PLGW2012

Member Since 11 Mar 2013
Offline Last Active Dec 20 2013 12:42 PM
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Topics I've Started

Am I Accidentally Glutening My Daughter?

16 December 2013 - 10:02 PM

About nine months ago my nine year old was diagnosed with Celiac disease during a routine blood test. She has no symptoms, except for scalp psoriasis which may or may not be related, according to her doctor.

When she was diagnosed, her blood work was off the charts with every marker for celiac, according to the nurse (not sure if that's true). Her upper endoscopy showed stage 3-4 damage - the doctor said he was shocked for all of these results in a nine year old with no symptoms.

My question is this: her doctor is not interested in doing any follow up tests, but I'm concerned - how do I know if she's improving?

Everyone else in the family eats gluten. Is the risk of cross-contamination high? When I asked the doctor (celiac specialist) he said "don't go overboard" with trying to keep gluten away from her just keep her from eating it.

Should I push the dr to retest and see if she's getting better, since we don't have symptoms as indicators?

Thanks, sorry for all of the questions.

Here are the original labs:

IgA Gliadin = 63.1

IgA TTG = GREATER THAN 100

EDIT: I forgot to mention the IgG Gliadin = 53.7

The reference value says:
Less than 20: Negative
20 to 30: Weak Positive
Greater than 30: Strong Positive

Newly Diagnosed Kids Should Get This Book!

04 April 2013 - 06:35 AM

My 8-year-old was diagnosed last month and I just want to recommend the book "Eating Gluten-Free with Emily". My daughter loves it and it has really helped me explain what's going on. It inspired her to be a "gluten detective", which has been very helpful when friends are offering snacks or my clueless husband offers something she can't eat.

"blunted Villi", Redness, & Swelling = Common With Celiac?

19 March 2013 - 12:27 PM

Today was my 8-year-old's biopsy. The doctor brought out pics that they took during the endoscopy and showed me that her upper intestine was "flat" with "blunted villi", redness, and swelling.

One dr already told ,e that with the positive TTG greater than 100, the positive titer (1:160) ema, the positive IgA and IgG, he is 100% certain she has celiac disease...but the doctor who did the endoscopy told me to wait for the biopsy results before we go gluten free.

After talking to many of you I feel like this doctor is not giving good advice and we should definitely cut out gluten immediately. But I am concerned about the redness and swelling. Is that normal with blunted villi from celiac?

Dr Says Go Easy On Gluten Before Biopsy?

15 March 2013 - 09:46 AM

My 8-year-old just had blood tests and the doctor told us that based on her blood work he wants her to limit her gluten consumption to 1 piece of bread per day before her endoscopy Tuesday. I've read conflicting information. Most of what I read on celiac.com says that she should eat the same diet she always has and then go gluten free right after the biopsy, but the doctor is saying to cut it down based on her blood test results.

 

I'm even getting conflicting information from the GI office - one nurse says to plan to go completely gluten free as soon as we are home from the biopsy, but another says she tells people to wait until they get the biopsy results just in case it's not celiac.

 

What do you all think?

 

These were her results (I don't know if this matters, but I thought I'd put them up anyway):

 

Immunoglobulin A:          74      Normal (Range 28-180)

 

Endomysial Abs, S (IgA):    High  Positive Titer 1:160 (What does this one mean? I don't even know what a positive titer is :blink: )

 

IgA TTG:      Greater than 100  (Greater than 30: Strong Positive)

 

IgA Gliadin: 63.1 Positive (Greater than 30: Strong Positive)

 

IgG Gliadin: 53.7 Positive (Greater than 30: Strong Positive)

 

Also, how do you recommend jumping in? Should I get rid of all of the gluten in the house? Should I let her have one last pizza, etc., before the biopsy? It's hard to let her eat anything with gluten in it now because I feel like it's poisoning her.

 

I've posted a bunch here in the past few days, and I'm so thankful for everyone's help.

 

 


Just Starting Out, How Careful Do You Need To Be?

13 March 2013 - 07:08 AM

My 8-year-old daughter was just diagnosed with celiac disease, and I'm overwhelmed (which I'm sure is very common). How careful should I be? Do we need to keep food separate, use different utensils, avoid French fries that may have been contaminated in a fryer, etc?

She doesn't really have symptoms, so I don't think it will be super obvious when we accidentally give her gluten. But is a basic diet good to start with, or do I need to start checking her lip gloss ingredients?

It just kind of hit me last night - we web to Applebee's for 99 cent kids night, and there was nothing on the kid's menu that wasn't full of bread and/or breaded. It was like a kid's gluten free for all.

I know I need to learn where it is safe to eat and where it isn't , but how careful do I need to be in other areas?