I haven't posted for a long time because I was doing fairly well with my diet, but now I am having a flare-up, back on pepto and a bland diet. I can't get into my gastro dr until next month so my family dr prescribed Diphen/Atropine until my diet kicks in. I haven't taken it because it causes drowsiness and I already have been feeling tired lately. He ran some blood work and my vitamin B12 levels came back high 976 pg/ml, so I looked it up. My questions are could mast cells have anything to do with B12 being high? I read a little about mastocytosis also. What tests should I ask my gastroentronologist to do or is he not the right dr for this problem?
Thanks I'd appreciate any help.
Barb
Mast cells and high B12
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Mast cells and high B12
DX with MS, Hashimothyroiditis, Hypothyroid, Raynauds, Lymphocytic Colitis
Hi Barb,
More than a few of us show high B-12 levels. Mine is always high because I take 2 mg every day, but in some cases it is high with little or no supplementation.
You have posed a very interesting question because it is possible to use an immunofluoroassay based on B-12 monoclonal antibodies to detect serum tryptase levels. B-12 antibodies are the result of an adverse immunoglobulin reaction to cyanocobalamin (the cheapest, most common form of B-12). The fact that a test that detects B-12 antibodies can be used to detect serum tryptase suggests that b-12 antibodies would need to be elevated (but not necessarily B-12 itself). I'm just guessing here because I have no knowledge of the details of the test process (immunofluoroassy). But as an example, consider this asthma research abstract:
Eosinophils are elevated during active asthma episodes and certain other types of mast cell (allergic) reactions.
Here is another abstract and this one found that B-12 was also elevated (whenever eosinophils were elevated). Eosinophils, mast cells, and basophils, are essential elements of allergic inflammation.
There is no test available to measure histamine or mast cell degranulation directly. But when mast cells degranulate they also release tryptase into the blood. Therefore the proper test to detect a mastocytosis reaction or a mast cell activation disorder (MCAD) event is a serum tryptase test. But there is a relatively narrow window of opportunity during which a test will provide useful information. Tryptase levels peak roughly 2 hours after the event is triggered and then decay relatively rapidly. If a sample is not drawn within a few hours after the peak, the blood levels of tryptase might be back down to normal levels, producing a normal (negative) test result.
Your GI specialist almost surely would have no knowledge of the role that mast calls play in digestive system issues unless she or he happened to be trained at the Brigham and Women's Hospital in Boston, under the direction of Dr. Maria Castells. A few allergists have been trained by Dr. Castells also, but they are few and far between. We have a limited list of such specialists who might be qualified to work with MC patients who have mast cell issues.
List Of Doctors Very Helpful For Treating Mast Cell Issues
But the bottom line is that the second research abstract especially, suggests that there is certainly at least a possibility that elevated B-12 levels may be associated with mast cell reactions. Thank you for bringing this to my attention, and I apologize that I couldn't be more helpful.
Tex
More than a few of us show high B-12 levels. Mine is always high because I take 2 mg every day, but in some cases it is high with little or no supplementation.
You have posed a very interesting question because it is possible to use an immunofluoroassay based on B-12 monoclonal antibodies to detect serum tryptase levels. B-12 antibodies are the result of an adverse immunoglobulin reaction to cyanocobalamin (the cheapest, most common form of B-12). The fact that a test that detects B-12 antibodies can be used to detect serum tryptase suggests that b-12 antibodies would need to be elevated (but not necessarily B-12 itself). I'm just guessing here because I have no knowledge of the details of the test process (immunofluoroassy). But as an example, consider this asthma research abstract:
Serum B12 tryptase level as a marker of allergic airway inflammation in asthma.Abstract
Tryptase is a specific marker of mast-cell activation and plays a part in the pathophysiology of various allergic diseases including asthma, but little is known of the spillover of this enzyme into the systemic circulation. Therefore, we measured serum levels of mast-cell-derived tryptase in 21 patients with mild to moderate asthma and 20 healthy, subjects, using a B12 monoclonal antibody-based immunofluoroassay that detects both monomers and tetramers of alpha- and beta-tryptases. There was a good correlation between serum and sputum tryptase levels, and, compared with healthy subjects (1.68 +/- 0.31 ng/ml), asthma patients had higher concentrations of serum tryptase (atopic asthma, 4.18 +/- 0.95 ng/ml, p = 0.022; nonatopic asthma, 3.93 +/- 0.82 ng/ml, p = 0.031). Although serum tryptase levels did not correlate with asthma symptom scores, peak expiratory flow, or forced expiratory volume in 1 s, they positively correlated with mast-cell and eosinophil counts (p = 0.041 and p = 0.025, respectively) and eosinophil cationic protein contents (p = 0.029) in induced sputum. These results suggest that serum tryptase detected with B12 antibody is a marker of allergic airway inflammation in asthma.
Eosinophils are elevated during active asthma episodes and certain other types of mast cell (allergic) reactions.
Here is another abstract and this one found that B-12 was also elevated (whenever eosinophils were elevated). Eosinophils, mast cells, and basophils, are essential elements of allergic inflammation.
Cobalamin (vitamin B12) and B12 binding proteins in hypereosinophilic syndromes and secondary eosinophiliaAbstract
Serum cobalamin (vitamin B12) and unsaturated B12 binding capacity (UBBC) have been measured in 24 cases of hypereosinophilia: 16 were cases of hypereosinophilic syndrome (HES) and 8 of secondary eosinophilia. The two groups were similar with respect to absolute eosinophil counts. Serum cobalamin and UBBC were found to be markedly increased in most cases of HES and normal in secondary eosinophilia. This elevation of UBBC was mainly related to the increase of R binders (transcobalamins I and III). The elevated serum cobalamin and R binders in HES were due neither to a higher intracellular content of R binders nor to an increased release of these binders from eosinophils of HES. Pure fractions of eosinophils obtained from HES and secondary eosinophilia did not exhibit any difference in vitamin B12 binders. On the other hand, neutrophil-rich fractions from the same patients showed a higher content of intracellular B12 binding proteins than pure eosinophil fractions, irrespective of the cause of eosinophilia. These findings suggest that the increased serum vitamin B12 and UBBC could reflect an expanded pool of both eosinophils and neutrophils in HES and, thus, provide an additional argument for the inclusion of this syndrome in the group of myeloproliferative disorders.
There is no test available to measure histamine or mast cell degranulation directly. But when mast cells degranulate they also release tryptase into the blood. Therefore the proper test to detect a mastocytosis reaction or a mast cell activation disorder (MCAD) event is a serum tryptase test. But there is a relatively narrow window of opportunity during which a test will provide useful information. Tryptase levels peak roughly 2 hours after the event is triggered and then decay relatively rapidly. If a sample is not drawn within a few hours after the peak, the blood levels of tryptase might be back down to normal levels, producing a normal (negative) test result.
Your GI specialist almost surely would have no knowledge of the role that mast calls play in digestive system issues unless she or he happened to be trained at the Brigham and Women's Hospital in Boston, under the direction of Dr. Maria Castells. A few allergists have been trained by Dr. Castells also, but they are few and far between. We have a limited list of such specialists who might be qualified to work with MC patients who have mast cell issues.
List Of Doctors Very Helpful For Treating Mast Cell Issues
But the bottom line is that the second research abstract especially, suggests that there is certainly at least a possibility that elevated B-12 levels may be associated with mast cell reactions. Thank you for bringing this to my attention, and I apologize that I couldn't be more helpful.
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.
Barb, I so hope you can find answers and get some relief! Please keep us posted. You will be in my thoughts and prayers!
Martha E.
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Tex, Thank you for your knowledge.
I have looked at your links, very medical, I appreciate your input.
My doctor just called and said not to worry that my B12 levels were just over normal and said nothing more.....we really do need to be our own advocate.
Us with MC have some of the symptoms of histamine anyway. I have a mild case of Grovers disease, on my stomach and very little on my back, but it makes me wonder if its from histamine. Also something new, very little small pimples with semi clear centers, I pop them and they go away buy the end of the day, (I don't mean to be gross but maybe someone else has the same problem). I am trying to figure out what is causing them, if it is something I am eating. I also have Rosacea, a mild case. With autoimmune issues new ones keep popping up.
I see a holistic/natural path doctor and he prescribed digestive enzymes, because I don't make enough and probiotics. I read not to take probiotics if you have MC? Is this true? What about digestive enzymes? Its complicated wondering what suppliments you should take.
Thank you for any help or if you have any similar symptoms.
I have looked at your links, very medical, I appreciate your input.
My doctor just called and said not to worry that my B12 levels were just over normal and said nothing more.....we really do need to be our own advocate.
Us with MC have some of the symptoms of histamine anyway. I have a mild case of Grovers disease, on my stomach and very little on my back, but it makes me wonder if its from histamine. Also something new, very little small pimples with semi clear centers, I pop them and they go away buy the end of the day, (I don't mean to be gross but maybe someone else has the same problem). I am trying to figure out what is causing them, if it is something I am eating. I also have Rosacea, a mild case. With autoimmune issues new ones keep popping up.
I see a holistic/natural path doctor and he prescribed digestive enzymes, because I don't make enough and probiotics. I read not to take probiotics if you have MC? Is this true? What about digestive enzymes? Its complicated wondering what suppliments you should take.
Thank you for any help or if you have any similar symptoms.
DX with MS, Hashimothyroiditis, Hypothyroid, Raynauds, Lymphocytic Colitis
I may have Grovers disease, because if I overdo histamine I get those characteristic red, itchy bumps or weals.
Unless we have been in remission for awhile, many of us cannot tolerate probiotics. Some of us can tolerate probiotics early on, but they rarely provide any benefits toward recovery.
In December the American Gastroenterological Association Institute published new guidelines for the medical management of microscopic colitis. The new guidelines state that they specifically do not recommend treatment with probiotics when attempting to induce clinical remission. Previously they recommended probiotics.
Some members here have found that digestive enzymes seem to help. I tried a single capsule one day at breakfast and they didn't agree with me. After a couple of hours I started vomiting about every every hour or so, and after my stomach was empty I had the dry heaves for the rest of the day. It made me so sick that it was 4 or 5 days before I got up the nerve to try any solid food again.
Hopefully you will have better luck if you try them.
Tex
Unless we have been in remission for awhile, many of us cannot tolerate probiotics. Some of us can tolerate probiotics early on, but they rarely provide any benefits toward recovery.
In December the American Gastroenterological Association Institute published new guidelines for the medical management of microscopic colitis. The new guidelines state that they specifically do not recommend treatment with probiotics when attempting to induce clinical remission. Previously they recommended probiotics.
Some members here have found that digestive enzymes seem to help. I tried a single capsule one day at breakfast and they didn't agree with me. After a couple of hours I started vomiting about every every hour or so, and after my stomach was empty I had the dry heaves for the rest of the day. It made me so sick that it was 4 or 5 days before I got up the nerve to try any solid food again.
Hopefully you will have better luck if you try them.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.
I feel like I may have higher histamine at times because I will get what refer to as water bumps inside my mouth that I can't help but pop. I have been taking a benedryl 25mg to lower my histamine at night before I start a new day, that seems to help, but if I haven't gotten rid of enough histamine I end up with a couple water bumps the following morning.
I tried digestive enzymes early in my recovery, I must not have needed them because when I had a BM it tended to feel like my bum was on fire, so I quit them about as fast as I began them. All you can do it try them, it may give you a Gerd type feeling or a bum on fire and you will know rather soon whether you need any help with your bile breaking down your food.
cheers
Erica
I tried digestive enzymes early in my recovery, I must not have needed them because when I had a BM it tended to feel like my bum was on fire, so I quit them about as fast as I began them. All you can do it try them, it may give you a Gerd type feeling or a bum on fire and you will know rather soon whether you need any help with your bile breaking down your food.
cheers
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Thanks Erica,
I will eat something and with in a minute I will get a small blood blister under my tong, is that from histamine? I have just started an anti-histamine to see if what I have is from allergens. I plan to try it for a few days then quit and see what happens.
Tex,
I am going to try the digestive enzymes but I will pay special attention to what my body tells me, that's awful they made you that sick! And the probiotics, I have been on them before, but when I had this relapse I quit all my supplements and thought I better wait till I feel better, which is slowly happening. Energy is slow in coming back though.
Thank you all.
I will eat something and with in a minute I will get a small blood blister under my tong, is that from histamine? I have just started an anti-histamine to see if what I have is from allergens. I plan to try it for a few days then quit and see what happens.
Tex,
I am going to try the digestive enzymes but I will pay special attention to what my body tells me, that's awful they made you that sick! And the probiotics, I have been on them before, but when I had this relapse I quit all my supplements and thought I better wait till I feel better, which is slowly happening. Energy is slow in coming back though.
Thank you all.
DX with MS, Hashimothyroiditis, Hypothyroid, Raynauds, Lymphocytic Colitis
Yes, reactions that occur almost instantly are due to classic IgE (histamine-based) reactions due to mast cells releasing histamine in response to an allergen.Barb wrote:I will eat something and with in a minute I will get a small blood blister under my tong, is that from histamine?
Good luck with the enzyme supplements.
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.