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Self-Diagnose?


meg51577

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meg51577 Newbie

Last night it dawned on me that I might have celiacs after finally realizing that looking like I am in my second trimester is not normal. I have had many symptoms over the years, but never put the pieces together that maybe they are all connected. I am 34 years old, otherwise healthy and fit. My primary symptoms are:

1. Bloating/upset stomach/gas

2. Constipation that has been going on for 7 years

3. Sleeplessness (wake up every hour)

4. Hip pain (not sure if this is from running or something else)

5. High bilirubin values

I went to a GI doctor about the constipation and had a colonoscopy. Two polyps were found; one pre-cancerous and one not. She told me to do things I am already doing; I eat very healthy, drink lots of water and exercise. She never once mentioned a gluten intolerance but the more I read about it the more I am becoming convinced that this is the core problem.

My questions are:

1. Do you think it sounds like I might have celiacs?

2. Would it be bad if I just go gluten-free without confirmation from my doctor?

Thank you!


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mommida Enthusiast

I would go for testing for Celiac and the auto-immune liver disease associated with it. It seems to be (IMO) a common issue to have abnormal liver tests with Celiac (especially undiagnosed).

You have to eat gluten for the testing. Make the appointment as soon as possible. Go through with the testing. If your tests show nothing, I would still try the gluten free diet.

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    • Scott Adams
      Your approach makes a lot of sense — focusing on balanced meals and being cautious about cross-contamination is smart, especially when you’re traveling or unsure of a kitchen’s gluten-free practices. Many GF foods do lean toward higher sugar or processed ingredients, so prioritizing whole foods (lean protein, fruits, veggies, healthy fats) at meals can help keep energy steady. For snacks that fill you up, look for protein bars with simple ingredients, higher protein, and lower added sugars — reading labels is key on GF bars since “gluten-free” doesn’t always equal healthy. Pairing a salad with a quality protein bar when you’re unsure about a restaurant’s GF safety is a great strategy to avoid symptoms while still feeling nourished. 
    • Scott Adams
      I agree, unfortunately a gluten challenge means intentional gut damage and inflammation to those with celiac disease, and taking lots of AN-PEP enzymes could potentially decrease this and skew the results, although I've not seen specific studies on this idea.
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      I’m really sorry you’re going through this — what you’re describing is, unfortunately, something many long-term celiac patients encounter. A negative blood test after decades gluten-free does not rule out biopsy-proven celiac disease, and it’s frustrating that your documented history isn’t being taken seriously. Being dismissed while you’re dealing with menopause-related changes, neurological concerns, and recovery from a demanding job would exhaust anyone, and it’s understandable that this is affecting your mental health. You deserve care that looks at the full picture, not quick conclusions, and it’s okay to keep advocating for yourself or seek a provider who truly understands complex autoimmune cases. You’re not imagining this, and you’re not alone.
    • Scott Adams
      It sounds like you’re doing a really thoughtful, disciplined job listening to your body and tightening things up where needed. Tracking symptoms alongside foods in MyFitnessPal is a smart next step, especially since bloating and gas can come from specific GF ingredients (like gums, fibers, or certain flours) rather than gluten itself. Your approach to eating out, avoiding places that can’t confirm safety, and planning ahead for travel is exactly how many people stay well long-term. It’s also very common to discover that even “certified” or restaurant GF pizza doesn’t agree with you, so trusting that pattern makes sense. Overall, this reads like progress, not restriction—and the fact that you’re feeling better most of the time suggests you’re on the right path.
    • Scott Adams
      Just be sure that she continues eating lots of gluten daily for at least 2 weeks before the endoscopy, otherwise going gluten-free beforehand could create false negative results.
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