I have two conditions that are a bit baffling to my Doctors. One is for years I've had elevated amylase. I've had my pancreas looked at by specialisits and everything is fine (no tumors, no pancreatitis). I get a yearly MRCP to keep an eye on it.
I am taking digestive enzymes that have amylase in them -- hopefully that won't raise it further.
The other is burning mouth syndrome. It started after I got on a PPI. Basically my mouth (mainly my tongue) burns 24/7. I've seen multiple doctors in multiple specialties and from what I've been told there's no known cause and no known cure.
Anyone out there with elevated amylase and/or burning mouth syndrome?
two bizarre things I'm dealing with - Tex can you read this?
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Hi Suzy,
Have your doctors determined the type of amylase that's elevated? If not, they aren't thinking very clearly. P-amylase is made by the pancreas. S-amylase is mostly made by the salivary glands. If the salivary glands are inflamed or damaged, blood levels of S-amylase will be increased.
So unless your problem is elevated P-amylase, it's very, very, likely that you have elevated S-amylase as a result of burning mouth syndrome causing salivary gland inflammation.
Burning mouth syndrome is a mast cell activation disorder (MCAD) issue. Many MC patients have mast cell activation disorder (MCAD) issues (including me), but burning mouth syndrome is a somewhat uncommon symptom. Your doctors are mystified because they know nothing about MCAD.
Have you tried avoiding high histamine foods and avoiding foods and medications that trigger the release of histamine? Have you tried antihistamines? Have you read the information in the Mast Cell category here?
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17780
Tex
Have your doctors determined the type of amylase that's elevated? If not, they aren't thinking very clearly. P-amylase is made by the pancreas. S-amylase is mostly made by the salivary glands. If the salivary glands are inflamed or damaged, blood levels of S-amylase will be increased.
So unless your problem is elevated P-amylase, it's very, very, likely that you have elevated S-amylase as a result of burning mouth syndrome causing salivary gland inflammation.
Burning mouth syndrome is a mast cell activation disorder (MCAD) issue. Many MC patients have mast cell activation disorder (MCAD) issues (including me), but burning mouth syndrome is a somewhat uncommon symptom. Your doctors are mystified because they know nothing about MCAD.
Have you tried avoiding high histamine foods and avoiding foods and medications that trigger the release of histamine? Have you tried antihistamines? Have you read the information in the Mast Cell category here?
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17780
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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I had burning mouth syndrome although I never knew it had a name. Somewhere along the line it went away as did so many other problems when I figured out my diet and scrupulously avoided foods that cause trouble. I am still scrupulous about the foods I eat. It seems to me that so many of these so-called diseases or syndromes, each with a different name, are actually the result of a singular underlying cause so that when you clean up your diet and replace the nutrients in which you are deficient all these "different" diseases and syndromes go away or at least that has been my experience.
Jean
Jean
Thanks so much Tex and Jean. I'm feeling a little overwhelmed trying to figure this all out. I will read over the mast cell information today.
Tex, I'm so grateful for your input and insight! Maybe finally I can put the pieces of this puzzle together thanks to you.
The diagnosis of high amylase actually started about 4 years before the burning mouth began. The pancreatic specialist who did an endoscopic ultrasound of my pancreas back in 2011 ran a special blood test that fractionalized the amylase. It showed my amylase serum was 703 (normal 31-124), pancreatic amylase was 70 (normal 10-53), and salivary amylase was 633 (normal 11-83).
Based on this he said "The current study does not exclude a pancreatic source of elevation of amylase. Nonetheless, with the lack of any symptoms and stable endoscopic ultrasound findings over the last year, it is not likely that we have any significant problem from the pancreas. Given the very high salivary portion of amylase, a salivary source will need to be entertained at this point."
So you were right on! I subsequently had a neck ultrasound that found "no mass or other abnormality with the bilateral submandibular glands. Just slight heterogeneity of the right gland that is nonspecific in appearance."
I never made the connection before (and none of my doctors did either!) but you are so right...there must be a connection between the high salivary amylase, which I've had for years, and the burning mouth syndrome that started last year.
Jean, can you tell me what you can safely eat? My food plan for many months is just white rice, gluten free oatmeal, white fish, rice protein powder, cooked carrots and greens, potatoes, rice milk, bananas and ghee as I deal with the acid rebound from tapering of my PPI. But maybe there's more I should cut out?
I would be so happy if just changing my foods gets rid of my burning mouth! I'm willing to eat nothing but cardboard if that's what it takes. Thanks so much.
Tex, I'm so grateful for your input and insight! Maybe finally I can put the pieces of this puzzle together thanks to you.
The diagnosis of high amylase actually started about 4 years before the burning mouth began. The pancreatic specialist who did an endoscopic ultrasound of my pancreas back in 2011 ran a special blood test that fractionalized the amylase. It showed my amylase serum was 703 (normal 31-124), pancreatic amylase was 70 (normal 10-53), and salivary amylase was 633 (normal 11-83).
Based on this he said "The current study does not exclude a pancreatic source of elevation of amylase. Nonetheless, with the lack of any symptoms and stable endoscopic ultrasound findings over the last year, it is not likely that we have any significant problem from the pancreas. Given the very high salivary portion of amylase, a salivary source will need to be entertained at this point."
So you were right on! I subsequently had a neck ultrasound that found "no mass or other abnormality with the bilateral submandibular glands. Just slight heterogeneity of the right gland that is nonspecific in appearance."
I never made the connection before (and none of my doctors did either!) but you are so right...there must be a connection between the high salivary amylase, which I've had for years, and the burning mouth syndrome that started last year.
Jean, can you tell me what you can safely eat? My food plan for many months is just white rice, gluten free oatmeal, white fish, rice protein powder, cooked carrots and greens, potatoes, rice milk, bananas and ghee as I deal with the acid rebound from tapering of my PPI. But maybe there's more I should cut out?
I would be so happy if just changing my foods gets rid of my burning mouth! I'm willing to eat nothing but cardboard if that's what it takes. Thanks so much.
Suzy - I am happy to tell you what I eat but even though we both had/have a similar symptom, burning mouth, that does not mean that our safe foods will be similar. Also I have been eating this way for over 4 years and have been able to add back some things, mainly raw vegetables, that I didn't even attempt for nearly 3 years. That said my go to foods originally were ground lamb and kale chips (chopped kale leaves mixed with olive oil and salt and baked in the oven until crispy). I slowly added a few meats and fish (venison, cod, and pork) and a few well-cooked veggies (chard, cauliflower, broccoli). I also used coconut oil in addition to olive oil and have recently added ghee. My diet can best be described as a real food low carb paleo diet, so no grains and no fruit and no sugar or sweeteners. If I were you and your diet is helping I would stick with what you are doing but eliminate the oats. Eating a low carb diet entirely eliminated my Gerd so you might consider that too.
Jean
Jean
I've also had burning mouth syndrome for years now....had 5 doctors laugh and look at me like I had 5 heads....GI said it could be from acid reflux...gynecologist says could be hormones with my menopause.....I swear they will say anything.
Some days are worse than others, seems to get worse over the course of the day.....I agree with the others, it's horrible to have the feeling that you burned your tongue on hot soup day after day for years and not one doctor can give an answer.
This forum is the best thing ever, between the MC and now burning mouth and who knows what else I will run across that others are suffering from that I also have is comforting to say the least! I feel defeated and half crazy sometimes.....
Eventually I hope to figure it out.
Dropped the budesonide for now and started antihistamine...if the burning mouth would stop I might fall over.....
Thank you Tex for the link above , I will check it out.
Lou Ann
Some days are worse than others, seems to get worse over the course of the day.....I agree with the others, it's horrible to have the feeling that you burned your tongue on hot soup day after day for years and not one doctor can give an answer.
This forum is the best thing ever, between the MC and now burning mouth and who knows what else I will run across that others are suffering from that I also have is comforting to say the least! I feel defeated and half crazy sometimes.....
Eventually I hope to figure it out.
Dropped the budesonide for now and started antihistamine...if the burning mouth would stop I might fall over.....
Thank you Tex for the link above , I will check it out.
Lou Ann
Suzy, mine started around age 40 , about a year after a partial hysterectomy and that was 10 years ago....hot flashes since then also...so I'm with you on the hormones maybe being a cause......I hope it all dies down sooner than later, I've had enough....lol.....I also had mild pancreatitis once, but with gall bladder removal all my numbers went back to normal....do you have any other digestive issues with your BMS?
I too had burning mouth and tongue. Once I got on ReMag (super absorbable magnesium product by Dr. Dean) that was another symptom that faded. My hormones also seem to be normalizing along with any symptoms associated with GERD. We seem to be the magnesium police around here but I wonder if even amylase is affected by mag deficiency? If I were a betting woman, I would say most likely yes..... 
Our new motto should be "Magnesium deficiency until proven otherwise"
Our new motto should be "Magnesium deficiency until proven otherwise"Vanessa
Hi Vanessa,
Yes, elevated P-amylase production is associated with a magnesium deficiency because magnesium deficiency is associated with pancreatitis and pancreatitis typically results in elevated P-amylase levels. For all I know, elevated S-amylase levels may also be associated with a magnesium deficiency but I'm not aware of any research on that topic.
Tex
Yes, elevated P-amylase production is associated with a magnesium deficiency because magnesium deficiency is associated with pancreatitis and pancreatitis typically results in elevated P-amylase levels. For all I know, elevated S-amylase levels may also be associated with a magnesium deficiency but I'm not aware of any research on that topic.
Vanessa wrote:Our new motto should be "Magnesium deficiency until proven otherwise"
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.