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Thoughts On My Symptoms?


DG80

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DG80 Newbie

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

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

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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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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