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Do You Think I Have Celiac?


Dan2010

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Dan2010 Newbie

So for the past 2-3 months I have been dealing with a new health issue and I'm not sure what it is. There was about a month


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Dixiebell Contributor

Welcome! The small intestine is quite large, so they could have not taken enough samples or just missed the damaged area all together. If you have elevated antibodies and damage to your intestine, you should go gluten free. After a few months time you can have blood tests done again to see if the levels are going down. If something else besides celiac is going on, being gluten free will not mask those other problems. If you have not had blood tests for vitamin levels yet I would get that done soon. Each time you go back to eating gluten you are damaging your body. Celiac disease, I believe, has to have a trigger. For some, stopping smoking has been a trigger. Others, pregnancy/childbirth, car accidents, flu, surgery and I'm sure many more.

You can post your test results here and get some feedback about them.

Ask questions. You will get so much help here.

GFinDC Veteran

Celiac can show up at any point in life, youth, middle age or old age. So it's not odd that you would suddenly have symptoms after years of eating gluten without symptoms. You could ask your doctor for a copy of your test results and post them. Some people here are good at interpreting the results. I get the impression you were some what gluten lite before your testing? That could give a false result on the testing. But the small intestine is 22 feet long and the endoscopy can reach only a few feet at most. SO there is lots of room for other areas to be damaged that the docs can't test. If you had flattened mucosa you should get a copy of the analysis of the villi also. They aren't really supposed to be flattened and something caused that. Some doctors don't have a lot of experience with celiac and don't interpret results correctly.

Skylark Collaborator

Hi there. Which antibodies were elevated? Also were any interstitial lymphocytes seen in your biopsy (Marsh 1)? You may need to ask for the actual biopsy report to find this out. Some doctors refuse to call anything but Marsh 3 or 4 celiac, even though Marsh 1 can be an early stage of the disease.

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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).
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    • 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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