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Thoughts On My Symptoms?

DG80

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DG80 Newbie
DG80
Posted

I am in the process of getting a diagnosis (waiting for blood test results, endoscopy in a few days), and thankfully the doctors I am seeing are responsive to my celiac theory. (We've ruled out Lyme and a few other possibilities.)

I don't have digestive symptoms, but I do have/have had during this taxing summer: elevated CRP, low B12 and D3, mild anemia, ascites (a bit of fluid in the abdomen), swelling in hands and feet, sky-high sed rate, and intense, severe joint and muscle pain to the point where I was half paralyzed. I'm also moderately lactose intolerant.

Right now I'm on a low dose of prednisone for a few weeks (hoping to taper off soon), which is controlling the inflammation/pain/swelling nicely. I've also been off of gluten for about 12 days, as well as strictly limiting nightshades and eating anti-inflammatory foods such as turmeric. I feel okay, though at this point I can't tell if it's the medication or the absence of gluten. Probably both.

Did anyone have celiac-related swelling and joint/muscle pain? Mine was very, very bad: I could barely turn on a faucet or get dressed, I couldn't turn in bed, and my legs felt like they were on fire every time I had to stand up. I'm not exaggerating when I said above that I was half paralyzed. If anyone has had similar pain, what was your gluten-free recovery like? How long did it take? If you were accidentally glutened, did you have joint pain as a response and how bad was it?

Any thoughts on my symptoms or insight from your similar experiences would be appreciated! :)

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Dixiebell Contributor
Dixiebell
Posted

I was not diagnosed with celiac but my severe fatigue, joint pain, swelling and daily headaches have pretty much gone away. If you didn't know, you should still be eating gluten for your tests to be as accurate as possible. If you get an endoscopy tell your doc to make sure to take several samples for testing. Damage can be patchy. If your blood tests are positive, unless you have another reason for an endoscopy, you could skip it.

DG80 Newbie
DG80
Posted
  • Author

Thanks for the reply! I took the blood test only a couple days after going gluten free, so I think they'll be alright. And as for the endoscopy, I already told the doc that I'll be gluten free for 2 weeks by that point, and she said that would be okay (as opposed to 5 or 6 weeks, which would mess up the results).

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