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Waiting For Test Results


Kathy'sUnicorns

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Kathy'sUnicorns Apprentice

Hi all;

I had my blood test done Saturday and they still don't have the results back. This is my second day of being gluten free and I feel like a new person. On Monday I had left over japaneese steak house food (a last time out there if positive) for lunch. I was feeling so out of it. I felt drugged up, I couldn't concentrate on anything for an hour or so. Then that night for dinner I had fish that was breaded and started having the most excrusiating pain I've ever had and decided to go gluten free the next day. Even if my test results are negative I have had major improvement in just two days.

A little about myself. I have lupus (another autoimmune disease) so I'm sure I probably have Celiac Sprue. I've had problems with having bloating and pain in my stomach off and on for about 8 years. When I think back now I believe the times I didn't have pain I was on high doeses of prednisone.

Since about Spring I've started dropping things, having to look at words twice because I would read them wrong, when I spoke I would want to say one word but another one would come out (that made no sence <_< ) amoung other things. I read a post here the other day (not sure if it was this forum or not) that someone was saying things they had happening to them before being diagnosed and it was me to a T! I was so excited to finally find out I may not be as crazy as I thought I was.

Hope to get to know you all very well and will definately come to you for help and my time of uncertanty.


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Guest keegans_mommy

I use to do that with words too! I would try and say one thing but another would come out, I would stutter and look stupid constantly! I hated public functions because of this nonesense!

I am happy you are starting to feel better! It will continue to feel better the longer you go without gluten. :)

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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. 
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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.
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