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Hi, I Am New Here & Just Diagnosed With Celiac Disease About 6 Days Ago

mama2preston

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mama2preston Newbie
mama2preston
Posted

Hi, 

My name is Jessica and I just got diagnosed with Celiac Disease 6 days ago! But have had stomach/digestive issues for over 10 years. I also found out I am allergic to: Milk, Egg, Peanuts, Soybeans and Corn. So this is definitely been a huge adjustment in my diet. I am glad I found this site as I want to learn all i can about Celiac & the gluten-free way of life. Hope to get to know all of you. 

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nvsmom Community Regular
nvsmom
Posted

Welcome to the board.  :)

 

It looks like your have even more food issues to deal with than most of us.  There are a fair number around here with corn, soy and dairy issues too - you're in good company.

 

Just a reminder to keep an eye open for celiac in your kids too.  They'll have a 1 in 10, to 1 in 25, chance of developing celiac disease too.  I they are not gluten-free, they should be tested every couple of years for it.

 

Best wishes

LauraTX Rising Star
LauraTX
Posted

Welcome, Jessica! :) We are here to help, feel free to post any questions.  If you want to go into your profile and add a signature that says you are diagnosed Celiac and the other things you can't eat, it will help people tailor answers to your needs when they are answering any questions you post.  So glad to hear you are starting the diet you need to end those years of GI suffering!

cyclinglady Grand Master
cyclinglady
Posted

Welcome! Here is a link to an article that can be found under our "Coping" section:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

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      By Samanthaeileen1 · Posted

      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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