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Greetings all,
I recently went through a battery of tests for the allergist as he looks for more indicators of a systemic mast cell disorder. It was the standard histamine and tryptase (urine and serum), nothing out of the ordinary for mast cell issues. I expected the tests to all come back normal, and sure enough they did. No surprises there.
The allergist also ordered a serum chromagranin A test. I looked it up before I had the test and really didn't think too much about it. Well, of course this is the test that has come back elevated, which is concerning. I don't know much about this and the info on the internet is very clinical. I searched it here on the board as well, but there wasn't any information.
I know the test is used to screen for carcinoid syndrome, which is quite serious. However, I also read that it can be elevated due to PPI use, which I use twice a day. It can also be elevated when associated with IBD. This was one of the better sites I found that explains the test: http://www.carcinoid.org/sites/default/ ... ance_1.pdf
Does anyone have experience with this test or have a working knowledge about it? I've read enough to know that the implications for an elevated level can be very serious. But, with my PPI use and gastro problems I don't know if this is a legitimate result or falsely elevated. I'm guessing there will be a repeat test after I stop the PPI use for several days or so.
My test result was "60 nmol/L". The value range for a normal result is 0 - 5. I'm concerned to say the least.
Any thoughts or information would be welcome.
Thanks so much,
Julie
Test result - Chromagranin A
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Julie,
I don't know much about the test but am hoping that it is elevated due to inflammatory bowel disease or PPI. I know carcinoid syndrome and mast cell disease share similar symptoms.
I had a similar scare a few years ago and was tested for a pheochromocytoma (adrenal tumor) - similar symptoms to mast cell disease. I had to have an MRI to rule out the tumor, which of course it did. I bet they will do an MRI on you in the near future.
Fingers crossed that it's falsely elevated. When are they repeating the test?
Mary Beth
I don't know much about the test but am hoping that it is elevated due to inflammatory bowel disease or PPI. I know carcinoid syndrome and mast cell disease share similar symptoms.
I had a similar scare a few years ago and was tested for a pheochromocytoma (adrenal tumor) - similar symptoms to mast cell disease. I had to have an MRI to rule out the tumor, which of course it did. I bet they will do an MRI on you in the near future.
Fingers crossed that it's falsely elevated. When are they repeating the test?
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Julie,
With that test result, it's probably not possible to distinguish between PPI damage, and neuroendocrine, (NE), tumours. Note the conclusions of the research report at the following link:
http://www.ncbi.nlm.nih.gov/pubmed/15513336
You might find this information useful. Note that PPIs aren't known to cause gastric cancer, but they definitely cause the type of histological damage that leads to a positive result for that particular test. If you've been taking a PPI for a significant length of time, that is very, very likely to be the cause of that test result. Your GI doc should be able to advise you on whether or not an upper endoscopy with biopsies, or some other test, is needed, to verify what's going on. I would think that if there's no occult bleeding, the PPI is almost surely what caused that test result.
http://en.wikipedia.org/wiki/Enterochromaffin-like_cell
Tex
With that test result, it's probably not possible to distinguish between PPI damage, and neuroendocrine, (NE), tumours. Note the conclusions of the research report at the following link:
"Acid secretion inhibitors" refers to PPIs, of course.CONCLUSION: The current study confirms that serum CgA is a sensitive marker for the detection of NE neoplasia. Elevated levels found in patients with adenocarcinoma may indicate NE differentiation in the tumour. CgA is a useful tool in the monitoring of enterochromaffin-like (ECL) hyperplasia secondary to treatment with acid secretion inhibitors or atrophic gastritis.
http://www.ncbi.nlm.nih.gov/pubmed/15513336
You might find this information useful. Note that PPIs aren't known to cause gastric cancer, but they definitely cause the type of histological damage that leads to a positive result for that particular test. If you've been taking a PPI for a significant length of time, that is very, very likely to be the cause of that test result. Your GI doc should be able to advise you on whether or not an upper endoscopy with biopsies, or some other test, is needed, to verify what's going on. I would think that if there's no occult bleeding, the PPI is almost surely what caused that test result.
http://en.wikipedia.org/wiki/Enterochromaffin-like_cell
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.
Julie,
Food affects the result of that test. Here's a description of a meal test that can be used to distinguish between neuroendocrine tumors and enterochromaffin-like cell hyperplasia caused by the use of proton pump inhibitors:
http://www.ncbi.nlm.nih.gov/pubmed/20480408
IOW, if your test was taken under fasting conditions, then you may need to investigate further. If you had eaten within roughly the previous 8 hours, then the elevated result was probably due to the PPI.
Tex
Food affects the result of that test. Here's a description of a meal test that can be used to distinguish between neuroendocrine tumors and enterochromaffin-like cell hyperplasia caused by the use of proton pump inhibitors:
A test meal induced a significant CgA increase in long-term PPI users and in healthy controls. The meal did not affect CgA levels in patients with gastric carcinoid type 1 or patients with NETs.
"CgA" refers to Chromogranin A, of course, "NET" refers to neuroendocrine tumor, and "CAG" refers to chronic atrophic gastritis.Serum CgA should be determined in fasting individuals.
http://www.ncbi.nlm.nih.gov/pubmed/20480408
IOW, if your test was taken under fasting conditions, then you may need to investigate further. If you had eaten within roughly the previous 8 hours, then the elevated result was probably due to the PPI.
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.
Thank you Mary Beth and Tex for your replies.
Mary Beth - I have read that carcinoid and mast cell issues can present in similar fashion. What I don't understand is why I'm being tested for it now. With the mast cell issue having been confirmed by biopsy, I'm surprised that the allergist is testing me for carcinoid syndrome at this point. I plan on asking him about it. I don't have a f/up appt. with him yet because he's waiting on the test results from Mayo before we meet. I guess I'll probably see him in the next few weeks, so I'll know more then about what follow up is needed for the elevated chromagranin level. Thanks for keeping those fingers crossed for me!
Tex - Thanks so much for the information you provided. It's was very reassuring. I tend to think that the level is elevated due to the long term PPI use. That in combination with the fact that I did not fast for the test certainly could be reason enough for a false positive. Having said that I'll be a bit more reassured with a repeat test after discontinuing the PPI and fasting. No lingering doubts that way.
Thanks again for the info and support! It greatly helped!
Best to you both,
Julie
Mary Beth - I have read that carcinoid and mast cell issues can present in similar fashion. What I don't understand is why I'm being tested for it now. With the mast cell issue having been confirmed by biopsy, I'm surprised that the allergist is testing me for carcinoid syndrome at this point. I plan on asking him about it. I don't have a f/up appt. with him yet because he's waiting on the test results from Mayo before we meet. I guess I'll probably see him in the next few weeks, so I'll know more then about what follow up is needed for the elevated chromagranin level. Thanks for keeping those fingers crossed for me!
Tex - Thanks so much for the information you provided. It's was very reassuring. I tend to think that the level is elevated due to the long term PPI use. That in combination with the fact that I did not fast for the test certainly could be reason enough for a false positive. Having said that I'll be a bit more reassured with a repeat test after discontinuing the PPI and fasting. No lingering doubts that way.
Thanks again for the info and support! It greatly helped!
Best to you both,
Julie
Mary Beth,
I was doing a little more reading on chromogranin A and I came across this article. It's one of the recent articles that proposes diagnostic criteria for MCAD. I was surprised to see chromogranin A (positive serum) listed as one of the minor diagnostic criteria for MCAD. (See table 2) In all my reading on MCAD I don't remember seeing chromogranin A mentioned. Have you seen this referenced before?
http://www.jhoonline.org/content/pdf/1756-8722-4-10.pdf
In addition to the information in the table, the article states:
What are your thoughts?
Thanks!
I was doing a little more reading on chromogranin A and I came across this article. It's one of the recent articles that proposes diagnostic criteria for MCAD. I was surprised to see chromogranin A (positive serum) listed as one of the minor diagnostic criteria for MCAD. (See table 2) In all my reading on MCAD I don't remember seeing chromogranin A mentioned. Have you seen this referenced before?
http://www.jhoonline.org/content/pdf/1756-8722-4-10.pdf
In addition to the information in the table, the article states:
Maybe this answers my question of why the allergist tested me for this now, so long after my original diagnosis of ME. I'll definitely be asking him about it. Of course, this doesn't change the fact that my PPI use could have skewed the results, but it is interesting.Other useful markers fairly specific to mast cells include serum chromogranin A (in the absence of cardiac and renal failure, neuroendocrine cancer, and proton pump inhibitor use) and serum and urinary leukotriene and prostaglandin isoforms (e.g., leukotriene E4, prostaglandin D2, and prostaglandin 9a,11bPGF2.)
What are your thoughts?
Thanks!
Julie,
That was an interesting article. It points to how littel is known about mast cell mediator release. As the article states it may only take a little mast cell stimulation to release lots of inflammatory mediators. My sister has high prostaglandin D2 levels but no other markers ever come back high. Her doctor is convinced she has mast cell activation despite all the other usual tests being negative.
I also found it interesting that the article said that mast cell activation syndrome is relatively common and related to IC, venom reactions, and fibromyalgia (personally I think the list is longer but at least they are recognizing these). Now that I am so familiar with the symptoms I am seeing some people in my practice that I am certain have MCAS.
I go to my new allergist in 2 weeks so I will ask about the chromagranin A test. I don't take a PPI but it's good to know that it's a fasting test. You probably can't really interpret your results until you re-test under the right conditions.
Mary Beth
That was an interesting article. It points to how littel is known about mast cell mediator release. As the article states it may only take a little mast cell stimulation to release lots of inflammatory mediators. My sister has high prostaglandin D2 levels but no other markers ever come back high. Her doctor is convinced she has mast cell activation despite all the other usual tests being negative.
I also found it interesting that the article said that mast cell activation syndrome is relatively common and related to IC, venom reactions, and fibromyalgia (personally I think the list is longer but at least they are recognizing these). Now that I am so familiar with the symptoms I am seeing some people in my practice that I am certain have MCAS.
I go to my new allergist in 2 weeks so I will ask about the chromagranin A test. I don't take a PPI but it's good to know that it's a fasting test. You probably can't really interpret your results until you re-test under the right conditions.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
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Loracnagak
- Posts: 1
- Joined: Sat Jun 06, 2009 6:56 pm
RE: Chromagranin A Test
I have this test done every 6 mos as part of the oncology protocol for having had a carcinoid tumor. I had one on my appendix. I had taken a PPI for about 3 yrs prior to finding the tumor and after doing some research blamed the PPI for the growth of my tumor. I am off PPI now on a regular basis but due to another health issue I take them for a month at a time or Pepcid or other anti acids (magnesium). My oncologist has discovered that I must be off ALL anti acids at least 10 dys before getting the CgA test or it will raise my results sky high. I must also be fasting or the results will be elevated. What I am now trying to figure out is why my test is still slightly elevated inspite of following all these steps. I am now finding a link between elevated neuroendocrine cells and microscopic colitis, which I have had for 13 yrs. I have had all the other tests used to detect carcinoid (octreotide scan & 24 hr urine collection) and all are negative. I am in my 3rd year post surgical removal of the tumor. But.....now I am plagued by bowel obstructions and have had 3 surgeries for bowel resections in the last 9 mos and none of the doctors seem to know why. I am now trying to find out if all these issues for me are somehow connected. I hope my information may answer your question about PPI's. I have since come to feel that PPI's are totally unhealthy for anyone and will only take them temporarily.
Thank you for the info Loracnagak! I too hate taking a PPI (twice a day for awhile) but the pain I have without taking one is intolerable. So, where does that leave me? I'm not sure quite frankly. I see the hematologist tomorrow and I'm going to talk with him about the test results. I've had every abdominal scan/MRI known to man so I don't know if he'll feel it's necessary for some of the more specialized scans for carcinoid.
It's a bit confusing because a mast cell specialist in S. Carolina uses the test as a marker for diagnosis of a mast cell disorder. His take on my extremely high level is that it is mast cell related. This is not a commonly held theory however.
I'll find out more tomorrow but I do appreciate you sharing your experience and reminding me that a high level shouldn't be ignored!
Thanks so much,
Julie
It's a bit confusing because a mast cell specialist in S. Carolina uses the test as a marker for diagnosis of a mast cell disorder. His take on my extremely high level is that it is mast cell related. This is not a commonly held theory however.
I'll find out more tomorrow but I do appreciate you sharing your experience and reminding me that a high level shouldn't be ignored!
Thanks so much,
Julie
I took nexium for a year prior to getting sick. So many unanswered questions for all of us.
Julie, I wonder if getting on gastrocrom or ketotifen could help decrease your need for PPIs. It might be worth it to give it a try. Ketotifen is not available in the US but can be ordered by a pharmacy in Seattle that gets it from Canada.
Mary Beth
Julie, I wonder if getting on gastrocrom or ketotifen could help decrease your need for PPIs. It might be worth it to give it a try. Ketotifen is not available in the US but can be ordered by a pharmacy in Seattle that gets it from Canada.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Good points Mary Beth. It would be great to come off the PPI. I'm eager to find out which meds Dr. Afrin will suggest. I have a feeling I'm looking at going on a number of meds in addition to what I already take. I'm not excited about this prospect, but if it helps me to feel better then I'm all for it.
I saw the hematologist today. He acknowledges knowing little to nothing about mast cell issues. (Getting used to hearing that.) The ex-allergist called him and told him that he questioned my biopsy results from the gastroenterologist and therefore the whole mast cell diagnosis. I didn't even waste my breath on this one. I just told the hematologist the allergist was misinformed and he (the allergist) should take it up with the gastro if he had questions. Enough said.
The hematologist didn't think it was too likely that the chromagranin test was indicative of carcinoid given my symptoms. However, he ordered the 24h 5-HIAA urine test to rule in/out possible carcinoid issues. Mary Beth, isn't this same test used for mast cell diagnosis? Am I remembering this correctly? If so, how am I supposed to know what an elevated result would mean...carcinoid or mast cell issues?
On with the never ending saga...
Julie
I saw the hematologist today. He acknowledges knowing little to nothing about mast cell issues. (Getting used to hearing that.) The ex-allergist called him and told him that he questioned my biopsy results from the gastroenterologist and therefore the whole mast cell diagnosis. I didn't even waste my breath on this one. I just told the hematologist the allergist was misinformed and he (the allergist) should take it up with the gastro if he had questions. Enough said.
The hematologist didn't think it was too likely that the chromagranin test was indicative of carcinoid given my symptoms. However, he ordered the 24h 5-HIAA urine test to rule in/out possible carcinoid issues. Mary Beth, isn't this same test used for mast cell diagnosis? Am I remembering this correctly? If so, how am I supposed to know what an elevated result would mean...carcinoid or mast cell issues?
On with the never ending saga...
Julie
Julie,
I think that is one of the tests used. Looking over the labs I just had done there was no order for a CgA test and I thought there would be. You will have to pick the brain of your new doctor to see what he is thinking. When is your appointment?
Mary Beth
I think that is one of the tests used. Looking over the labs I just had done there was no order for a CgA test and I thought there would be. You will have to pick the brain of your new doctor to see what he is thinking. When is your appointment?
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Mary Beth,
I read up more on the urine test, 5 HIAA, and it seems to be a "rule in/rule out" for issues that present similarly to masto issues. I must have been mistaken thinking it was also used as a screenng tool for masto related issues.
I'm getting my medical records organized this weekend in hopes that I can mail them out later this week. Once Dr. Afrin has those in place, I can make the appointment. (No appointments made without the records in his hands apparently.)
I still don't have anyone in my area that can manage my issues day to day, which is a great concern. I've been so symptomatic lately and I literally have no one who can try and help me get the symptoms under control. I contacted Valerie up at TMS (Masto Society, for those who are wondering) and asked if TMS might keep a list of physicians they could recommend. She responded, but didn't offer any names or suggestions on finding someone here in the DC area.
For some reason she asked about my history, which I briefly shared with her and this was her response:
Seeing this in writing, coming from her, for some reason stopped me in my tracks. I'm just struggling with all of this. After two years of telling my physicians that I believed I had MCAD/MCAS, I'm now having trouble wrapping my mind around it which seemingly makes no sense. I guess I'm in the transitional time of going from being suspicious I had MCAD, to now knowing I do, and struggling with what that means for me.
I read up more on the urine test, 5 HIAA, and it seems to be a "rule in/rule out" for issues that present similarly to masto issues. I must have been mistaken thinking it was also used as a screenng tool for masto related issues.
I'm getting my medical records organized this weekend in hopes that I can mail them out later this week. Once Dr. Afrin has those in place, I can make the appointment. (No appointments made without the records in his hands apparently.)
I still don't have anyone in my area that can manage my issues day to day, which is a great concern. I've been so symptomatic lately and I literally have no one who can try and help me get the symptoms under control. I contacted Valerie up at TMS (Masto Society, for those who are wondering) and asked if TMS might keep a list of physicians they could recommend. She responded, but didn't offer any names or suggestions on finding someone here in the DC area.
For some reason she asked about my history, which I briefly shared with her and this was her response:
"You sound like you have classic mast cell activation syndrome. With elevated chemical markers, you even fulfill the new criteria for MCAS."
Seeing this in writing, coming from her, for some reason stopped me in my tracks. I'm just struggling with all of this. After two years of telling my physicians that I believed I had MCAD/MCAS, I'm now having trouble wrapping my mind around it which seemingly makes no sense. I guess I'm in the transitional time of going from being suspicious I had MCAD, to now knowing I do, and struggling with what that means for me.