Hi Everyone,
It looks like I have good news in terms of an explanation for my ongoing food problems!
Here's the quick back story for those of you who do not know me. I have MC in remission for 5 years (it was mild to begin with), on GF diet, DQ 1,1 genes, but have continued with almost all pervasive food sensitivities > the 7 or 8 foods diet. I've been in and out of the forum the last year or so trying to figure out if this have anything to do with the MC although I have no colon symptoms, but do have upper GI symptoms instead and many other systemic symptoms that I keep at bay with the limited diet.
After one of my last discussions on the forum re: gluten and neuropathy, I decided to get my neurotransmitter levels tested. Because it's clear that neurological problems are an issue for me even more so than colon problems. Eating gluten definitely gives me neuro problems, but that's not the only food trigger. I thought there might be a connection with low GABA.
The results were very interesting.
High dopamine, low DOPAC (the metabolite of dopamine)
This indicates that the enzyme that converts dopamine to DOPAC is not functioning properly. That's monoamineoxidase, which is responsible for the conversion all the biogenic amines (except histamine) that are contained in the food we eat. That means I am probably also not converting tyramine, serotonin, melatonin, and the others properly. These amines are contained in a large number of foods. I can only presume tha tfoods high in dopamine will also be problematic and foods that contain the pre-cursor to dopamine (tyrosine) may also be adding fuel to the fire. That's a huge number of foods. Bingo!
Basically, there's a bottleneck which creates an excess of these amines in my body that then float around causing symptoms, which in the case of tyramine are similar to the symptoms caused by histamine intolerance. I suspect the neurological symptoms are connected to the excess dopamine that accumulates since it is connected with some neuro problem or it could be from the low GABA.
In short I have an amine intolerance.
I also tested low for GABA, as i suspected, and Serotonin.
These "alternative" tests are not held in high regard by traditional physicians. One drawback is that they are only a snapshot of your neurotransmitter levels at any moment in time. Naturally, the levels are always changing and therefore the test may give incomplete or incorrect results. However, in my case, the test is so confirming what's already happening in my body that I'm quite sure it's accurate.
The treatment for re-balancing the levels goes in stages. So for the moment, I've started taking GABA powder as the first step. The next step is to take 5-HTP to boost the serotonin, but since I suspect I won't be able to process increased serotonin due to the faulty enzyme, I will probably skip that step. I think the ultimate step will be trying out a dopamine antagonist (prescription or natural, if there is one) because decreasing the dopamine should take off the stress on the low activity enzyme. It will be interesting to see if that helps improve my food intolerances.
I suspect that I've had a certain degree of lower activity with this enzyme my whole life, but I didn't start getting all the food intolerances until after the MC started. I don't think there is any direct connection between this problem and the MC. I suspect that environmental conditions triggered both.
I don't want to get too excited about this until I try out the treatment and see if there is a positive effect. It does seem like a minor miracle after all this time to have a plausible explanation and lab results to back it up for my pervasive food reactions.
I appreciate all the support that I've received here in recent years as I've struggled to try to make sense of what was going on and if it was connected to the MC. I'm keeping my fingers crossed that this is going to make a difference, but only time will tell.
This is the place where I had the testing done, in case anyone is interested.
https://www.neurorelief.com/index.php?p=home
All the best to everyone!
Update and possible breakthrough
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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faithberry
- Adélie Penguin
- Posts: 246
- Joined: Wed Mar 04, 2009 7:40 am
Update and possible breakthrough
Faith
LC (in remission)
LC (in remission)
Faith,
Very interesting! And nothing i've ever heard of. I wonder if this mechanism could also be associated with the levels of depression seen in some MC sufferers. And maybe it explains why low dose Naltrexone helps some people? You say you think it has an environmental cause, but it could be an inborn/genetically-linked enzyme deficiency, no?
Please keep us posted on your progress.
Very interesting! And nothing i've ever heard of. I wonder if this mechanism could also be associated with the levels of depression seen in some MC sufferers. And maybe it explains why low dose Naltrexone helps some people? You say you think it has an environmental cause, but it could be an inborn/genetically-linked enzyme deficiency, no?
Please keep us posted on your progress.
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Hi Faith,
This is an interesting theory, and you may well be correct, (that you have a deficiency of monoamineoxidase, or it isn't performing effectively). What you describe is sort of the opposite of Parkinson's disease, where a deficiency of neurotransmitters is enhanced by using a monoamineoxidase inhibitor. Be very careful when "experimenting" with a treatment for this, though, because as you are probably aware, one of the side effect risks, (if things go wrong), is Parkinsonism, (which is not a nice syndrome, to say the least). I believe that I would try to find out why the MAO isn't performing properly, (or if there is a deficiency), before proceeding with a treatment to chemically reduce dopamine levels. Of course, on the other hand, regulation by diet, should be a relatively safe approach, and that might provide some interesting insight into the situation.
It's good to see a post from you again.
Tex
This is an interesting theory, and you may well be correct, (that you have a deficiency of monoamineoxidase, or it isn't performing effectively). What you describe is sort of the opposite of Parkinson's disease, where a deficiency of neurotransmitters is enhanced by using a monoamineoxidase inhibitor. Be very careful when "experimenting" with a treatment for this, though, because as you are probably aware, one of the side effect risks, (if things go wrong), is Parkinsonism, (which is not a nice syndrome, to say the least). I believe that I would try to find out why the MAO isn't performing properly, (or if there is a deficiency), before proceeding with a treatment to chemically reduce dopamine levels. Of course, on the other hand, regulation by diet, should be a relatively safe approach, and that might provide some interesting insight into the situation.
It's good to see a post from you again.
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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faithberry
- Adélie Penguin
- Posts: 246
- Joined: Wed Mar 04, 2009 7:40 am
Thanks for your replies, support and interest.
Zizzle ~ I've read that 33% of the population have lower activity of this particular enzyme; not necessarily radically lower as appears to be the situation in my case. I do think this was genetic to some degree in my situation. I've had an aversion for high tyramine foods from early childhood. I would never ever eat fermented foods, avoided strong cheeses at all cost, and so on. It's like my body intuitively knew from the start. I just avoided those foods - the super high one - but still had a wide-ranging diet.
It didn't fall into profound food sensitivity until after the gut problems started. Here's a thought on that:
"Some people are born with a sensitive constitution and react more readily to food chemicals than others. The tendency is probably inherited, but environmental triggers — a sudden change of diet, a bad food or drug reaction, a nasty viral infection (for example, gastroenteritis, glandular fever) — can bring on symptoms at any age by altering the way the body reacts to food chemicals. Women often become more sensitive in their child-bearing years, perhaps due to hormonal changes, which might be nature’s way of preventing pregnant and breast-feeding women from eating foods that could harm the developing baby."
from The Royal Prince Alfred Hospital Allergy Unit webpage on Food Intolerance
http://www.sswahs.nsw.gov.au/rpa/allerg ... fintro.cfm
This hospital clinic in Australia has developed expertise in food intolerance. They focus to a large degree on intolerance to Salicylates, Amines, Glutamates and colorings and preservatives. Dieticians in the US are less convinced about Salicylate (in food) sensitivity and some believe it may be a benzoate sensitivity instead. Although there isn't full agreement on what's what, more research based information is gradually becoming available about intolerances due to low enzyme activity like this.
Tex, You raised several good points and I'm very grateful for you thoughts on this topic. Your reverse analogy to Parkinson's disease is a good one. The last thing I should ever take is an MAO Inhibitor. The diet I need to follow is the one recommended for people who take MAO Inhibitors and more expanded and strict than that.
I appreciate your cautions. I agree, it's very tricky when it comes to manipulating neurotransmitter levels. It's interesting that one of my previous GI doctors wanted to give me a dopamine-antagonist for my constipation problem > domperidone, which is not available in the US. There is a link between elevated dopamine and GI problems.
I don't know if I will be able to obtain more proof than what I have already with this neurotransmitter test. However, I am going to take an organic acids urine test soon and that might also show some interesting results.
The amine intolerance isn't my only food problem. I have gluten intolerance and IgG intolerances to some inhalants and foods. It's also said that when people have an intolerance to one food chemical, they often have an intolerance to more than one. I'm pretty certain I'm sensitive to biogenic amines, benzoates, and glutamates.
When I took the neurotransmitter test, I added on the adrenal panel for a small extra charge, which shows my adrenals are functioning under par. I had that test done about 4 years ago and the results were similar so not a big surprise. It's understandable given the continual stress on my body due to these widespread intolerances.
I will definitely be taking your advice into account when I look at treatment options with my naturopath. When we reviewed the test results, she clearly told me that the enzyme that converts dopamine to dopac isn't working, but she didn't make the connection with amine sensitivity. When I got home, I looked up what that enzyme is and once I saw that's it's monoamine oxidase it all became obvious because I've studied quite extensivel about food chemicals already, I just haven't been able to pinpoint the right ones. I thought it was histamine intolerance.
This also explains why I have a hard time eating meat - the mainstay of MC'ers. Amines grow on meat as it ages. The meat we get vacuum packed at the supermarket can be up to 10 weeks old. It's not safe for people like me. Some people believe that eating a lot of meat increases dopamine levels > "dopaminergic society" but that has not been fully proven. I was eating a lot of meat due to the MC and I gradually had more and more problems.
My hunch is that if I'm able to reduce the dopamine my constipation will resolve and in turn my GI burning will resolve. But it's still a hunch and only time will tell.
Another possibility is that mercury is interfering with the action of the enzyme. Mercury can mess up enzyme activity, it is suggested in Amalgam Illness. And I've certainly tested off the charts of high mercury levels in urine tests. I think I was exposed to environmental chemicals that might have causes this build up of mercury in my body.
I asked my naturopath what the causes of increased dopamine is and she said they don't know for certain. Age and chronic stress are two factors she mentioned. Chronic stress has definitely had a big role in my life.
Sorry this is so long, but I just want to share these details in case they might be of help to someone else.
I will keep you posted.
Thank you all!
Zizzle ~ I've read that 33% of the population have lower activity of this particular enzyme; not necessarily radically lower as appears to be the situation in my case. I do think this was genetic to some degree in my situation. I've had an aversion for high tyramine foods from early childhood. I would never ever eat fermented foods, avoided strong cheeses at all cost, and so on. It's like my body intuitively knew from the start. I just avoided those foods - the super high one - but still had a wide-ranging diet.
It didn't fall into profound food sensitivity until after the gut problems started. Here's a thought on that:
"Some people are born with a sensitive constitution and react more readily to food chemicals than others. The tendency is probably inherited, but environmental triggers — a sudden change of diet, a bad food or drug reaction, a nasty viral infection (for example, gastroenteritis, glandular fever) — can bring on symptoms at any age by altering the way the body reacts to food chemicals. Women often become more sensitive in their child-bearing years, perhaps due to hormonal changes, which might be nature’s way of preventing pregnant and breast-feeding women from eating foods that could harm the developing baby."
from The Royal Prince Alfred Hospital Allergy Unit webpage on Food Intolerance
http://www.sswahs.nsw.gov.au/rpa/allerg ... fintro.cfm
This hospital clinic in Australia has developed expertise in food intolerance. They focus to a large degree on intolerance to Salicylates, Amines, Glutamates and colorings and preservatives. Dieticians in the US are less convinced about Salicylate (in food) sensitivity and some believe it may be a benzoate sensitivity instead. Although there isn't full agreement on what's what, more research based information is gradually becoming available about intolerances due to low enzyme activity like this.
Tex, You raised several good points and I'm very grateful for you thoughts on this topic. Your reverse analogy to Parkinson's disease is a good one. The last thing I should ever take is an MAO Inhibitor. The diet I need to follow is the one recommended for people who take MAO Inhibitors and more expanded and strict than that.
I appreciate your cautions. I agree, it's very tricky when it comes to manipulating neurotransmitter levels. It's interesting that one of my previous GI doctors wanted to give me a dopamine-antagonist for my constipation problem > domperidone, which is not available in the US. There is a link between elevated dopamine and GI problems.
I don't know if I will be able to obtain more proof than what I have already with this neurotransmitter test. However, I am going to take an organic acids urine test soon and that might also show some interesting results.
The amine intolerance isn't my only food problem. I have gluten intolerance and IgG intolerances to some inhalants and foods. It's also said that when people have an intolerance to one food chemical, they often have an intolerance to more than one. I'm pretty certain I'm sensitive to biogenic amines, benzoates, and glutamates.
When I took the neurotransmitter test, I added on the adrenal panel for a small extra charge, which shows my adrenals are functioning under par. I had that test done about 4 years ago and the results were similar so not a big surprise. It's understandable given the continual stress on my body due to these widespread intolerances.
I will definitely be taking your advice into account when I look at treatment options with my naturopath. When we reviewed the test results, she clearly told me that the enzyme that converts dopamine to dopac isn't working, but she didn't make the connection with amine sensitivity. When I got home, I looked up what that enzyme is and once I saw that's it's monoamine oxidase it all became obvious because I've studied quite extensivel about food chemicals already, I just haven't been able to pinpoint the right ones. I thought it was histamine intolerance.
This also explains why I have a hard time eating meat - the mainstay of MC'ers. Amines grow on meat as it ages. The meat we get vacuum packed at the supermarket can be up to 10 weeks old. It's not safe for people like me. Some people believe that eating a lot of meat increases dopamine levels > "dopaminergic society" but that has not been fully proven. I was eating a lot of meat due to the MC and I gradually had more and more problems.
My hunch is that if I'm able to reduce the dopamine my constipation will resolve and in turn my GI burning will resolve. But it's still a hunch and only time will tell.
Another possibility is that mercury is interfering with the action of the enzyme. Mercury can mess up enzyme activity, it is suggested in Amalgam Illness. And I've certainly tested off the charts of high mercury levels in urine tests. I think I was exposed to environmental chemicals that might have causes this build up of mercury in my body.
I asked my naturopath what the causes of increased dopamine is and she said they don't know for certain. Age and chronic stress are two factors she mentioned. Chronic stress has definitely had a big role in my life.
Sorry this is so long, but I just want to share these details in case they might be of help to someone else.
I will keep you posted.
Thank you all!
Faith
LC (in remission)
LC (in remission)
The mercury could certainly have an effect on your dopamine level, possibly in either direction. For example:
Some say that various vitamins increase dopamine levels, also.
Good luck with your research, and please keep us posted.
Tex
http://www.beatcfsandfms.org/html/HgRootCause.htmlThere is evidence that mercury can block the dopamine-beta-hydroxylase (DBH) enzyme as noted in REFERENCE #8. DBH is used to make the noradrenaline (NA) neurotransmitter and low NA can cause fatigue and depression.
http://viartis.net/parkinsons.disease/toxic.causes.htm. . . mercury potently causes the release of dopamine, thereby lowering dopamine levels.
Some say that various vitamins increase dopamine levels, also.
Good luck with your research, and please keep us posted.
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.
Faith,
That's fascinating, and I admire your diligent and thoughtful pursuit of some answers that might help your overall health. Along with the prudent notes of caution you have to look out for, it seems like a promising line of inquiry.
Thanks for sharing this story. I had mild neurological symptoms, and hope to avoid future problems along those lines... so i'll keep that sort of testing in mind (and hope I don't need to pursue it).
Best,
Sara
That's fascinating, and I admire your diligent and thoughtful pursuit of some answers that might help your overall health. Along with the prudent notes of caution you have to look out for, it seems like a promising line of inquiry.
Thanks for sharing this story. I had mild neurological symptoms, and hope to avoid future problems along those lines... so i'll keep that sort of testing in mind (and hope I don't need to pursue it).
Best,
Sara
Hi Faith,
Have you had a mineral analysis done on your hair? The reason they use hair is that it shows the impact of the last couple of months, rather than just a point in time figure like a blood test. It also gives quite different results as our bodies will try to excrete some minerals into the hair in order to keep the blood levels fairly even.
This is the people I have used, but you can find others on line: http://www.interclinical.com.au/hairtissue.php
It can give some very interesting results. Things like excess of mercury can cause all sorts of other issues.
You might want to do some googling on the work of Igor Tabrizian in this space.
http://www.mindmotivations.com/hypnosis ... s-immunity
Lyn
Have you had a mineral analysis done on your hair? The reason they use hair is that it shows the impact of the last couple of months, rather than just a point in time figure like a blood test. It also gives quite different results as our bodies will try to excrete some minerals into the hair in order to keep the blood levels fairly even.
This is the people I have used, but you can find others on line: http://www.interclinical.com.au/hairtissue.php
It can give some very interesting results. Things like excess of mercury can cause all sorts of other issues.
You might want to do some googling on the work of Igor Tabrizian in this space.
http://www.mindmotivations.com/hypnosis ... s-immunity
Lyn
Faith,
Dr. Charles Parker's blog may interest you. He just posted about IgG and delayed food allergy, particularly to gluten and casein, and how it can affect our neurotransmitters over time.
http://www.corepsychblog.com/2011/05/ps ... z1NCeuSJuj
Dr. Charles Parker's blog may interest you. He just posted about IgG and delayed food allergy, particularly to gluten and casein, and how it can affect our neurotransmitters over time.
http://www.corepsychblog.com/2011/05/ps ... z1NCeuSJuj
That's a good article, but I'm puzzled by the title:
Psychiatric Medications and Immunity: IgG and IgE
Did I miss it somewhere? What did the text have to do with psychiatric medications?
Tex
Psychiatric Medications and Immunity: IgG and IgE
Did I miss it somewhere? What did the text have to do with psychiatric medications?
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.
Yes, I agree, he failed to make that connection clear. He's saying IgG mediated allergies may be responsible for failure or disappointment with psychiatric treatments. I'm sure there is a much more profound relevance than just that. I'd like to beleive the need for psychiatric treatment wouldn't exist if the IgG activity were not present.
I suspect there's a lot of merit in that statement.Zizzle wrote:I'd like to beleive the need for psychiatric treatment wouldn't exist if the IgG activity were not present.
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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faithberry
- Adélie Penguin
- Posts: 246
- Joined: Wed Mar 04, 2009 7:40 am
Thanks everyone, these are all great suggestions!
I have had a mineral analysis on my hair, a number of years ago. Another interesting idea to consider. I've had so many alternative tests done in the past that didn't shed light on my situation that I'm hesitant to invest money in more tests unless I have a strong clue or intuition about it. The next test I am taking is the urine organic acids test. I'm just waiting to receive the test kit. But I'll keep the hair mineral analysis in mind.
Zizzle, that's a really interesting article and great resource. Yikes, it makes you realize how complex all this is. I did have an IgG test done and do have reactions to some foods and inhalants, but nothing like the spectrum that I actually have. I didn't have an elevation for gluten or casein, but I hadn't eaten either for years when I had the test done last August. As he points out, you can also be reacting to your own neurotransmitters like histamine and serotonin and hormones. It can get so complex.
I don't know that there is an obvious or easy answer or treatment for my problem, even the low activity enzyme. I suspect I may need to detox the mercury.
I really appreciate everyone's input so much. Thanks from my heart.
I have had a mineral analysis on my hair, a number of years ago. Another interesting idea to consider. I've had so many alternative tests done in the past that didn't shed light on my situation that I'm hesitant to invest money in more tests unless I have a strong clue or intuition about it. The next test I am taking is the urine organic acids test. I'm just waiting to receive the test kit. But I'll keep the hair mineral analysis in mind.
Zizzle, that's a really interesting article and great resource. Yikes, it makes you realize how complex all this is. I did have an IgG test done and do have reactions to some foods and inhalants, but nothing like the spectrum that I actually have. I didn't have an elevation for gluten or casein, but I hadn't eaten either for years when I had the test done last August. As he points out, you can also be reacting to your own neurotransmitters like histamine and serotonin and hormones. It can get so complex.
I don't know that there is an obvious or easy answer or treatment for my problem, even the low activity enzyme. I suspect I may need to detox the mercury.
I really appreciate everyone's input so much. Thanks from my heart.
Faith
LC (in remission)
LC (in remission)