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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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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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