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It's Starting To Sink In.


Kingschild

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Kingschild Newbie

My daughter was diagnosed with celiac disease one week ago. My doctor wants to test me also since I have so many of the symptoms.

I decided to just read up on celiac disease and lactose intolerance because that seems to be the most common things that bother us.

Today is the 1st day that I haven't had a stomach ache in a very long time. :) My daughter is showing significant improvement also. She's 11 years old.

It's so hard to change the way you think about food. But I know in time I'll get better at this.

I appreciate some comments I've read here about cross-contamination. I just used the same knife for me and dh's peanut butter and jelly sandwiches. :o Mine was on a gluten-free rice cake - his was on wheat bread. Live and learn. :)

So...any tips on making my home more safe for us would be greatly appreciated.

{{{yawn}}} It's late...I'll come back and chat with everyone tomorrow. ;)

Mysti


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tarnalberry Community Regular

Welcome to the site! It is a great resource!

BTW, if you still need to get testing YOU should NOT be gluten-free yet. You need to be consuming gluten for the tests to be accurate.

KaitiUSA Enthusiast

Welcome to the board!

If you have any questions just ask..there are so many knowledgable people on this site. You will find great information and support

paradise2004 Rookie

Some things that help: use separate toasters for gluten-free and non gluten-free bread. At restaurants, when ordering salads, ask for no croutons. Check shampoos and make-up for possible ingredients. Basically just be really careful. Good luck, and as time goes on it does get a lot easier.

Carriefaith Enthusiast

Welcome!

So...any tips on making my home more safe for us would be greatly appreciated.

*Label things like butter, peanut butter, mayonnaise, jam, dip, ect. "gluten free".

*Be careful when using non-stick pans that have cuts on them, gluten can get trapped inside the cracks.

*Get rid of wooden cooking utensils/cutting boards that were used to handle food containing gluten.

*You would also need a new and separate deep fryer.

*Wash all surfaces before placing food on them.

Kingschild Newbie

Thanks for the tips. I didn't know I needed to still be eating gluten for the test. I've been gluten-free for 3 or 4 days. I'm getting tested tomorrow...should I eat something with gluten today?

Did any of you change your whole family over to gluten-free eating to make things simpler?

celiac3270 Collaborator

For the blood test? Sure...can't hurt.

For endoscopy/biopsy, yes, but don't eat or drink after midnight for purposes of testing. If you're having that test done, the hospital has probably told you this.


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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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