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Hi Friends,
I am reluctantly going to see a doctor. My husband and naturopath have been pressuring me for some time to get a physical. I am just so bitter from all the either useless or abusive previous visits that it's easier to live with the abdominal pain. I am giving in to see this one as he practices with a group of other MDs and naturopaths so I am hoping that if he is brave enough to do that, he may actually be somewhat open minded. Hopefully I can be open minded enough to give the guy a chance. I am really dreading it.
I'm not sure but I think I told you guys a couple of years ago that I went through some testing for porphyria. Saw a specialist who was sure this was my problem. He was so convincing I spent a lot of money for a genetic test which came back negative. Because of this he wasn't interested in helping me further even though two of my porphyrin (sp?) levels were very abnormal. I asked if there was anything else that could cause this and he said he didn't know of anything. If I didn't have porphyria I wasn't interesting anymore. This was two years after cleaning up the diet so it should not be caused from gluten anymore.
Anyway, was doing internet research and found a condition called pyrluria which is where you produce too much kryptopyrrole which binds to B6 and zinc preventing your body from absorbing them. So, the last couple of weeks I have been taking large doses of both of these and have been pain free. The problem is I don't know if this is a real condition. All the sites talking about this are alternative sites. So, I don't know if I should even mention this to the doctor. I can't stand any more eye rolling, but I would really like to get tested for this. I would also like help with the supplementing as I am nervous taking high doses of the B6 and zinc on my own. Will they deplete other vitamins and minerals??
Anyway, what do you think? Has anyone heard of this and should I bring it up with the doctor?
Thanks for listening. Sorry to sound so bitter. Hopefully unloading on you guys will help me be polite to the doctor.
Love,
Cristi
Hi Everyone
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Cristi!
I can hear how frustrated you are with traditional medicine.....for good reason it seems. That's something us MCers can certainly relate to.
I haven't heard about that condition but I would opt for telling the doc everything. If he is practicing with naturopaths, I would hope he would be open-minded or at least refer you to one of them. It might be best not to supplement for now in case tests might be ordered (so that you will have a baseline).
Please update me on what problems you are currently having. Is it mainly abdominal pain? How about bloating, diarrhea, etc.? I'd be interested to hear more.....also about what foods you are avoiding and what supplements you are taking.
Let's hope you get some answers soon. Meanwhile, rant and rave all you want!
Love,
Polly
I can hear how frustrated you are with traditional medicine.....for good reason it seems. That's something us MCers can certainly relate to.
I haven't heard about that condition but I would opt for telling the doc everything. If he is practicing with naturopaths, I would hope he would be open-minded or at least refer you to one of them. It might be best not to supplement for now in case tests might be ordered (so that you will have a baseline).
Please update me on what problems you are currently having. Is it mainly abdominal pain? How about bloating, diarrhea, etc.? I'd be interested to hear more.....also about what foods you are avoiding and what supplements you are taking.
Let's hope you get some answers soon. Meanwhile, rant and rave all you want!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Polly,
Sorry to rant against all traditional medicine. I know there are lots of caring doctors out there such as yourself. I think I am hiding behind the angry because I am just so darned scared that I am at the end of the road as far as finding any relief or explanation for what is going on with me.
I rarely have D anymore and if I do it is never watery, just slightly soft. I wake up feeling fine...my pain begins after my morning BM. It feels as though my intestines will not uncramp and I immediately start burping. In fact most of the escaping gas comes from burping...I rarely fart. On good days I have what feels like hard ropey intestines. On bad days it feels like all my intestines are stuck in one large hard knot against my back.
I can eat meat, some cooked veggies, buckwheat, rice and hemp milk. I ate paleo for a year until fruit became the suspect...then added the rice. I've rotated these in and out a million times. Can only conclude that food isn't the issue with what's left.
I started taking low dose naltrexone about 6 weeks ago. My body and stamina have improved with this. I used to need to eat four times a day to keep up strength and weight. Now I can eat 3 meals...smaller ones and get no hypogycemia feelings and maintain weight.
With all the porphyria testing I did, two major porphorin levels were abnormal. I remember the one was protoporphorin. These are used in the development of heme and involves the liver. I 've always been iron deficient anemic. I also have a very high HDL 110.
I will stop the B6 and zinc until I get some test results. My appointment is this afternoon and I will ask him about the pyroluria. I am feeling like a zebra with purple spots. Maybe I'll get lucky and he will be the type who enjoys a challenge. Thanks so much for your input.
Love,
Cristi
Sorry to rant against all traditional medicine. I know there are lots of caring doctors out there such as yourself. I think I am hiding behind the angry because I am just so darned scared that I am at the end of the road as far as finding any relief or explanation for what is going on with me.
I rarely have D anymore and if I do it is never watery, just slightly soft. I wake up feeling fine...my pain begins after my morning BM. It feels as though my intestines will not uncramp and I immediately start burping. In fact most of the escaping gas comes from burping...I rarely fart. On good days I have what feels like hard ropey intestines. On bad days it feels like all my intestines are stuck in one large hard knot against my back.
I can eat meat, some cooked veggies, buckwheat, rice and hemp milk. I ate paleo for a year until fruit became the suspect...then added the rice. I've rotated these in and out a million times. Can only conclude that food isn't the issue with what's left.
I started taking low dose naltrexone about 6 weeks ago. My body and stamina have improved with this. I used to need to eat four times a day to keep up strength and weight. Now I can eat 3 meals...smaller ones and get no hypogycemia feelings and maintain weight.
With all the porphyria testing I did, two major porphorin levels were abnormal. I remember the one was protoporphorin. These are used in the development of heme and involves the liver. I 've always been iron deficient anemic. I also have a very high HDL 110.
I will stop the B6 and zinc until I get some test results. My appointment is this afternoon and I will ask him about the pyroluria. I am feeling like a zebra with purple spots. Maybe I'll get lucky and he will be the type who enjoys a challenge. Thanks so much for your input.
Love,
Cristi
Hi Cristi,
Unfortunately, I don't know much about either condition, but apparently, not all porphyrias are genetic.
Regarding pyroluria, have you seen this, over on Cara's board:
http://www.glutenfreeandbeyond.org/foru ... .php?t=302
Good luck with the new doctor.
Love,
Tex
Unfortunately, I don't know much about either condition, but apparently, not all porphyrias are genetic.
Regarding pyroluria, have you seen this, over on Cara's board:
http://www.glutenfreeandbeyond.org/foru ... .php?t=302
Good luck with the new doctor.
Love,
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.
Hi Everyone,
I went to my appointment yesterday and he was a pretty nice guy...spent an entire hour with me. He said that I have had all the tests done already and there really isn't much else he could think to do. He thought the best next step would be to see a medical hypnotherapist who could help me cope with the pain and provided a referral. Then at the end of the appointment when we were done looking at all my records, I was telling him specifically what was happening when I experience pain and he thought that in the absence of anything from all my testing that perhaps I have an adhesion or muscle restriction resulting from my surgery in 2005. So, he gave me the name of an abdominal massage person who he trusts could get deep into my gut to feel for any problems and perhaps do some adjusting. He also suggested using caster oil packs on my abdomen to dissolve adhesions. I'd never heard of this before but found lots of testimonials on the web from people post surgery saying it had worked for them. It all sounds somewhat far fetched, but I guess that's where I am at and I appreciated getting some new ideas to try.
I then talked with my naturopath and she wants me to research a product called colofac which is an antispasmotic and also read where some people with IBS where getting relief using two very small doses of like .25 mg of melatonin during the day. Seems worth looking into. My husband reminded me that a couple of years ago a GI had mentioned that some people with gut pain get relief from a migraine medication....that it is a headache pain experienced in the gut. I do have focus and balance problems sometimes but I don't know if that is associated with migraines or not.
Thanks for the link, Tex. This doctor had never heard of the condition and wasn't inclined to look into it. Looks like the MD in that link will help people get the testing without a doctor so I may have to do that.
I've already set up appointments in August for the hypnotherapist and the abdominal massage. I'll let you know how it goes. Thanks for everything. You guys are the best.
Love,
Cristi
I went to my appointment yesterday and he was a pretty nice guy...spent an entire hour with me. He said that I have had all the tests done already and there really isn't much else he could think to do. He thought the best next step would be to see a medical hypnotherapist who could help me cope with the pain and provided a referral. Then at the end of the appointment when we were done looking at all my records, I was telling him specifically what was happening when I experience pain and he thought that in the absence of anything from all my testing that perhaps I have an adhesion or muscle restriction resulting from my surgery in 2005. So, he gave me the name of an abdominal massage person who he trusts could get deep into my gut to feel for any problems and perhaps do some adjusting. He also suggested using caster oil packs on my abdomen to dissolve adhesions. I'd never heard of this before but found lots of testimonials on the web from people post surgery saying it had worked for them. It all sounds somewhat far fetched, but I guess that's where I am at and I appreciated getting some new ideas to try.
I then talked with my naturopath and she wants me to research a product called colofac which is an antispasmotic and also read where some people with IBS where getting relief using two very small doses of like .25 mg of melatonin during the day. Seems worth looking into. My husband reminded me that a couple of years ago a GI had mentioned that some people with gut pain get relief from a migraine medication....that it is a headache pain experienced in the gut. I do have focus and balance problems sometimes but I don't know if that is associated with migraines or not.
Thanks for the link, Tex. This doctor had never heard of the condition and wasn't inclined to look into it. Looks like the MD in that link will help people get the testing without a doctor so I may have to do that.
I've already set up appointments in August for the hypnotherapist and the abdominal massage. I'll let you know how it goes. Thanks for everything. You guys are the best.
Love,
Cristi
Your mention of adhesions, reminds me that when I was having my worst reactions, and I was severely bloated, it always felt as if my guts were pulling against my belly button. That pain was terrific, sometimes.
Love,
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.