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k2626

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k2626 Explorer

Hi guys, I have had odd things going on for 8 months. This includes random nerve and stabbing pains mainly in random fingers, toes, ankle also muscle twitching,extreme joint cracking and the development of beaus lines (horizontal lines on my nails) I posted here awhile back due to mid left sided ab pain. I was tested for celiacs I believe by stool sample and maybe blood too. I have a 2 yr history of what was dx as GERD.

Now for over 1. 5months I have had an upper left pain ab pain and some mid burning. The left pain is like slight jabs throughout the day. Some gurgling after I eat as well.

Its important to note my dad died of pancancer this summer.

I had a lipase test which was elevated and also a ca 19 (tumor marker) I was told both could be elevated for reasons outside of pancan. Clearly my pancreas is not happy.

I had an ab US, CT w dye and EUS (no biopsy)--all clear. I still fear something is being missed in terms of PC as I have read stories of masses etc being missed on scans. However, I am looking for other reasons vs focusing on this per the suggestions of others with PC and my dr.

Can anyone advise if this pain sounds like celiac, if you have had elevated lipase and if its hard to dx?


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JNBunnie1 Community Regular
Hi guys, I have had odd things going on for 8 months. This includes random nerve and stabbing pains mainly in random fingers, toes, ankle also muscle twitching,extreme joint cracking and the development of beaus lines (horizontal lines on my nails) I posted here awhile back due to mid left sided ab pain. I was tested for celiacs I believe by stool sample and maybe blood too. I have a 2 yr history of what was dx as GERD.

Now for over 1. 5months I have had an upper left pain ab pain and some mid burning. The left pain is like slight jabs throughout the day. Some gurgling after I eat as well.

Its important to note my dad died of pancancer this summer.

I had a lipase test which was elevated and also a ca 19 (tumor marker) I was told both could be elevated for reasons outside of pancan. Clearly my pancreas is not happy.

I had an ab US, CT w dye and EUS (no biopsy)--all clear. I still fear something is being missed in terms of PC as I have read stories of masses etc being missed on scans. However, I am looking for other reasons vs focusing on this per the suggestions of others with PC and my dr.

Can anyone advise if this pain sounds like celiac, if you have had elevated lipase and if its hard to dx?

I would love to be able to help with your questions, unfortunately, I don't understand half of what you described above, and I don't know what any of those tests mean.

Also, were you diagnosed with Celiac? Are you on a gluten-free diet? I didn't understand the answer to those questions from your post.

RiceGuy Collaborator

The kinds of pains and nail problems you describe are often indicative of nutrient deficiencies. If it were me, I'd start taking a sublingual methylcobalamin (active form of B12), at least 3mg per day, B-complex, vitamin D3, vitamins A and E, magnesium, and probably zinc. Since there is no known level of overdose for B12, take as much as you want/need without fear. Most nutrients do not cause an overdose unless you really overdo it, but it might be a good idea to get regular blood work to keep track. This is what I would do regardless of what any doctor says.

Stomach gurgling can be an indication of poor digestion, so you may also want to get some betaine HCL w/pepsin, digestive enzymes and maybe a probiotic.

Do make certain all supplements are gluten-free of course.

Lipase enzymes are for the digestion of fats. What is your current diet like? Do you consume dairy? How strict have you been about the gluten-free diet?

k2626 Explorer

Thanks for your response. I have not been dx as having issues with gluton, so I eat oats, bread etc...I am wondering if soem people with gluten issues have elevated lipase levels due to digestion issues.

Thanks so much...

  • 2 years later...
deezer Apprentice

has your pain improved?

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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