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Amooliakin

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Amooliakin Apprentice

Hi everyone. I am glad I found this forum and look forward to learning a lot from all of you. My daughter (8 years old) was diagnosed 3 weeks ago and we have been trying VERY hard to be gluten-free since then. We have of course made a few mistakes since this is all brand new to us. But I think we are doing great with fresh foods, gluten-free baking at home, shopping for gluten-free foods on line and at health food stores. It helps that we live in New York City where you can get just about anything (except maybe peace and quiet ;) )

I have so many small questions that come up but of course I can't think of any of them now.

I just wanted to say hi and I will be reading posts and joining in soon.

Amy


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jayhawkmom Enthusiast

*Peek A Boo*

Hi Amy! =)

Corkdarrr Enthusiast

Hi Amy!

Welcome to the forum. I'm sure you'll find this to be a great place for support and resource for knowledge...these people know everything! I don't know where I'd be without this forum...lost, probably! :D

Courtney

mouse Enthusiast

Welcome to the forum Amy. It sounds like you have the diet well in hand. Just remember when you do have questions, we never consider any too dumb to ask. We have all been where you are, whether with kids, ourselves, friends or spouses.

Amooliakin Apprentice

Thanks - I have learned a lot from another forum where I asked my first batch of 1,000 or so questions :blink:

And of course I have been talking to everyone I know and reading every book I can get my hands on. But this will be more helpful because I specifically have questions about my child.

As I mentioned, my daughter was just diagnosed a few weeks ago. Since then my son (12) and I have also gotten the blood test but don't have results yet. If it turns out we have it too it should be easier in some ways. But I don't think either of us will take it at all as well as my daughter.

In her case she was really feeling lousy for a long time. So going on a diet to make herself feel better makes sense. MY son and I feel fine now. So if we have Celiac it will be one of those cases of hidden without symptoms.

Wish us good luck....

tarnalberry Community Regular

Welcome! This is a fab place, filled with helpful, friendly people! I'm glad to hear that you're getting the hang of the diet so quickly, and that it's helping. :)

AndreaB Contributor

Welcome Amy! :D


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Guest nini

Welcome! I've got a six year old daughter and both of us are gluten-free...

Guhlia Rising Star

Welcome, Amy!

kevsmom Contributor

Welcome, Amy -

This is a great place to come for information and support.

Cindy

happygirl Collaborator

Amy,

We are happy to have you here! This is a great place for information, support, research, recipes, etc. No question is too silly, stupid, or gross---we have all been there and done that, so to speak. :)

Your daughter is so lucky to have a mom that is so helpful and is determined to keep her 100% gluten free.

Some personal favorites of mine:

Tinkyada brand (rice) pastas...in all varieties of "normal" pastas.

San-J gluten free soy sauce (be careful, they have gluten containing ones, so make sure you get the right ones!)

gluten free pretzels

many McCormick brand seasoning packets (like tacos, enchiladas, etc) happen to be gluten free. Make sure to read the label each time as they can change. But you can go onto www.mccormick.com and find the ingredients for all their products.

many mainstream products happen to be gluten free....coke/pepsi/most sodas, corn/tortilla chips (which I just used in place of crackers), ....

Let us know what we can do. Welcome to the board.

Laura

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    • Samanthaeileen1
      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? 
    • Wheatwacked
      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
      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
      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. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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