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Celiac Disease Blood Test Positive, Lipase Levels Abnormal
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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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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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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