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Newly Diagnosed. Uggg


Diggraphics

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Diggraphics Newbie

I found out last week I have celiac. Ugggg. Started gluten free. With in 4 days started to feel better but now wow can I tell when I eat something My stomach doesn't like. It blows up like a balloon. It's very frustrating. How long does it generally take for your stomach to settle down. I heard it can take a while.


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bartfull Rising Star

Go to the Newbie 101 thread. It'll help you to learn how to avoid cross-contamination, and it'll teach you a lot in general. We all heal at different paces. A lot depends on how ling we have had it and how much damage we have.

 

At first you will have ups and downs. Some of us go through gluten withdrawal which is a very real physical thing. You might get headaches, mood swings, constant hunger. It's not a bad idea to eat lots of small meals instead of three big ones. And while you are healing you may find that some foods that SHOULDN'T make you sick, make you sick.

 

It's best to stick to simple whole foods at first - meat, veggies, and fruit. Rice seems to be OK and easy to digest too. But try to stay away from processed foods for a while, even if they are gluten-free.

 

Welcome to the forum! Feel free to ask as many questions as come to mind. And if you need to rant or cry, we're here for you. :) I promise that with a little time and experience, this will become easy for you. You'll be eating delicious foods that are healthier for you and you'll start feeling better than you ever believed possible.

Diggraphics Newbie

Thank u

AlwaysLearning Collaborator

Congratulations on the diagnosis! I hope that you can find the positive in getting the results, perhaps finally getting some mysteries solved, which goes a long way toward helping you feel strong about being gluten free.

I don't think there is anyone who has done it who hasn't had a whole slew of accidental glutenings in the beginning and some that you may never figure out the cause. Reading up on hidden sources is a great way to avoid them rather than have to learn through mistakes.

I think I got glutened every few days for the first month, though only a little. Darned toaster. That first big one that is a more major dose can be really disconcerting, so perhaps knowing it will likely happen will make it easier to handle when it does. I'd steer clear of eating out, at least in the short term.

Oh, and get tested for vitamin deficiencies early. Most who have had celiac for a while have a few, and getting them corrected could help the healing process and possibly avoid having to track down the cause of even more mystery symptoms. D, iron, and B12 seem to be the most common.

Best of luck to you, but if you're already reading the forums here, you'll probably do great!

 

Diggraphics Newbie

Thank you all for your responses. So glad I found these boards!!

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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.
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    • Churley
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