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Celiac Disease Blood Test Positive, Lipase Levels Abnormal


Alexander-C

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Alexander-C Newbie

Hey everyone. I'm new. 24 yo male. I will start with a quick intro to my story. I have been having the "typical" GI symptoms of celiac disease since I was around 17. Struggled off and on with episodes of extreme GI sickness and then months of being mildly nauseous and gassy. I was always a thin kid, but since about 17, I couldn't put any weight on. Grew taller, stayed around the same weight. I was always just told I would "fill in" when I got to my early 20s. Here I am at 24 and still very underweight and getting more sick by the week it seems. Some days I feel like I'm dying. It wasn't until about 1 year or so ago that I started having neurological symptoms that my doctors began taking me serious instead of brushing me off as having anxiety. My right eye became blurry, I was extremely fatigued, muscle spasms, and so the neurologist I was referred to suspected MS. My MRI came back normal so he then suspected celiac since I fit the bill and he understands there is a correlation between celiac disease and other autoimmune diseases.That was a year ago. Since then I have finally been referred to a good gastroenterologist who ran some blood work a few weeks ago. I tested positive for celiac. I am scheduled to have the endoscopy in 2 days to FINALLY confirm this as celiac once and for all. It feels like I have been living an eternity in misery with no clue as to what is wrong with me.

My main question (and I read a little in another thread but I wanted to introduce myself and get some new answers going): Did anyone else's lipase levels come back abnormal when you did the celiac blood work? I am suspecting something is off with my pancreas on top of (or because of) my undiagnosed celiac disease...

Also, feel free to give me any advice or experiences with the endoscopy. A bit nervous :unsure:


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SaraKat Contributor

I just got a positive blood test too (I am 35 y/o female). I have to have the endo next week and I am nervous too, but everyone I talk to says it really isn't a big deal at all. My BIL who is not a fan of getting blood tests, etc has had 2 endo's and even he said it was OK.

Regarding the lipase levels, mine were normal, but my iron/ferritin has been way off for years now and I never knew why.

I didn't have any of the typical celiac digestive symptoms and really never even heard of this disease, so I am shocked by my positive blood test. I just have bad upper left quadrant pain and have been mildly gassy over the years when I eat "junk food". I think the anemia should have been my red flag. My main symptom that made me keep going back to Dr's was the left sided pain- also in the rib cage.

Good luck!

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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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