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New W/ Questions - I'll Try To Keep It Short


wellsfamily

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wellsfamily Newbie

Hi everyone. Here is my story:

I have a son w/ Type 1 D and a daughter w/ a milk allergy.

I have been having the normal GI issues that seem to be common around here - asked my Dr to run celiac panel.

It was positive for Antigliadin IGG, others were in normal range (but nothing had a 0 value)

Had an endoscopy last week, waiting for results. Gluten Free for 4 days. I also started thyroid meds same day as going gluten free, so not sure which thing is making me feel better.

Here are some of my questions:

If the biposy is negative, how do I know if I truly have a gluten allergy/sensitivity? Do I test myself after a while or go to an allergist?

Can you please tell me what you do when you eat at a party or are invited to dinner? I feel like I will always have to bring my own food.

What are some hidden gluten foods that I might be missing?

Thanks for any advise.

Heather


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Offthegrid Explorer

Howdy - and welcome!

I'm not up on all the test results and what they mean, but I'm sure someone else will come along to explain.

I personally declined to have a biopsy after having a positive blood test. It is very obvious if I accidentally (or, in the beginning, purposefully) eat some gluten. You *could* do a gluten test if you go gluten-free for about a month, and then try some gluten. It is difficult in the beginning, however, to be completely gluten-free because it's hidden in so many things.

On the parties. If you can, I'd offer to bring a dish and then serve yourself some before anybody else touches it so it's not contaminated. Some gluten-free potato chips can be a good standby, as well as veggies, but these also can be contaminated.

As for dinners, if you feel comfortable, approach them about cooking at least one dish gluten-free. It can be difficult for people to comprehend, however. For now, maybe you could invite some friends over, cook everything gluten-free and talk about it?

Good luck. Don't be too hard on yourself, especially in the beginning. It takes time to figure this stuff out.

If you still find yourself getting sick and you're positive you've elimianted all the gluten, then you may have other intolerances. For me, that's dairy (casein) and soy. I'm working on eliminating soy with good results, but once in a while I find it slips in there even when I'm pretty careful, so still a learning process for me.

missy'smom Collaborator

Welcome. If you click on Celiac Disease Info above it will take you to a page that has a green box on the left. Towards the bottom of it is a link to a page of forbidden /unsafe ingredients.

debmidge Rising Star

My husband and I are the exception, not the norm as he has celiac disease & other food issues. This being said we do not eat food prepared at anyone else's home - we will bring a meal for him. He's only just recently been going to restaurants which have gluten free menus (Outback, Charlie Brown's, etc.).

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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.
    • Scott Adams
      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.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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