Hi Friends,
For all the newbies I will give a very brief history. I was Dx with LC four years ago and immediately eliminated gluten, dairy, soy, egg and yeast. After no progress went palio for a year, then did the FODMAP diet for the last year and also eliminated the 33 foods my blood test said I was allergic to. While I have reduced my D to almost normans once or twice a day, I have suffered with extreme IBS with cramping and bloating and much pain and fatigue.
While doing my usual 1 to 2 hour research online to find answers I came across the symptoms for pyroluria (I think it was mentioned here also). With the exception of schizophrenia, either myself or someone in my family has all the symptoms listed. It is kind of sketchy as mainstream medicine doesn't talk about it ...so the symptom list can be altered to match the product being sold. However the basic problem is with the absorption of B6 and zinc.
I ordered the test (urine) and sent it in and should get the results back next week. At the same time I did that my naturopath wanted me to do an amino acid test. I got those tests back and I am extremely deficient in all the amino acids that use B6 and zinc as building blocks. These amino acids are what control the neurotransmitters which control the gut ...among other things. The other huge symptom of this condition is huge internal anxiety.
I started taking larger doses of B6 and zinc along with omega 6 on Sunday along with the strict diet and I have been pain free for three days. I know it is too soon to celebrate but I feel better than I have any other time in the last 4 years. It feels so good. I just took an hour walk and I am not winded. I am just amazed.
I wanted to share because, while perhaps there are other pyrolurics here, I know there are a lot of malabsorbers here who could be helped with supplementation. I may be an extreme case but I could never have imagined that adding B6 and zinc could have such a huge impact in such a short time.
I did find a pubmed article about this and it said that this binding substance that interferes with B6 and zinc absorption can also manifest from having a leaky gut.
I am keeping my fingers crossed. I guess time will tell.
Love,
Cristi
I MAY have figured this out
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Cristi,
That's really encouraging. If you were able to eliminate symptoms that have been persistent for several years, that's pretty strong evidence that you're on the right track.
I hope this is the key that you've been searching for.
Love,
Tex
That's really encouraging. If you were able to eliminate symptoms that have been persistent for several years, that's pretty strong evidence that you're on the right track.
I hope this is the key that you've been searching for.
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.
I'm eager to see how many other problems that persist are from continued malabsorption that continues thought the diarrhea and other symptoms may have ended?
I'm glad you were so persistent. Hopefully others will see this who are in the same boat you were in.
I'm bad about remember to take my supplements, so this serves as a good reminder to get with it.
Yours, Luce
I'm glad you were so persistent. Hopefully others will see this who are in the same boat you were in.
I'm bad about remember to take my supplements, so this serves as a good reminder to get with it.
Yours, Luce
Hi,
So far so good today. I do think it's a combination of a genetic defect and malabsorption that has resulted in my severe symptoms. On the genetic side, I have always had mild intestinal problems but nothing approaching what I have gone through the last 4 years. I think the malabsorption was the stick that broke the camel's back. What I am finding interesting is that a lot of the info I gathered is coming from celiac forums. So either more celiacs have this genetic problem or it can also happen with malabsorption problems. It may explain the differences on this board between people having just diarrhea and those of us who have diarrhea and pain, cramping and bloating.
Pat, I started Sunday with 60 mg of B6 and 25 mg of zinc. I also added C and a multi without copper as copper binds with zinc. I also stopped taking fish oil and added primrose oil (omega 6) because for some reason pyrolurics are deficient in omega 6. I was looking through old tests and found one from 2002 that found me to be zinc deficient and a hair analysis from 2006 that showed my copper to be high and my zinc to be low. Why I didn't look at these seriously is a mystery to me. Time will tell if I am able to reverse that by zinc supplementation alone or if I will have to chelate sp? to get rid of the copper. I would imagine that without the genetic predisposition, malabsorption sufferers would have different doses of vitamins and minerals. But maybe not. Why does the small intestine choose to be bothered by some things and is fine with others? Maybe when the small intestine is damaged it malabsorbs some vitamins and minerals more than others. Just thinking out loud.
I meet with my naturopath on Monday so should get more info. I think she wants to supplement with a compounded prescription for the specific amino acids that I am not making. I am still in shock over how much of a difference this is making and still keeping my fingers crossed.
Thanks for all the good wishes. Love, Cristi
So far so good today. I do think it's a combination of a genetic defect and malabsorption that has resulted in my severe symptoms. On the genetic side, I have always had mild intestinal problems but nothing approaching what I have gone through the last 4 years. I think the malabsorption was the stick that broke the camel's back. What I am finding interesting is that a lot of the info I gathered is coming from celiac forums. So either more celiacs have this genetic problem or it can also happen with malabsorption problems. It may explain the differences on this board between people having just diarrhea and those of us who have diarrhea and pain, cramping and bloating.
Pat, I started Sunday with 60 mg of B6 and 25 mg of zinc. I also added C and a multi without copper as copper binds with zinc. I also stopped taking fish oil and added primrose oil (omega 6) because for some reason pyrolurics are deficient in omega 6. I was looking through old tests and found one from 2002 that found me to be zinc deficient and a hair analysis from 2006 that showed my copper to be high and my zinc to be low. Why I didn't look at these seriously is a mystery to me. Time will tell if I am able to reverse that by zinc supplementation alone or if I will have to chelate sp? to get rid of the copper. I would imagine that without the genetic predisposition, malabsorption sufferers would have different doses of vitamins and minerals. But maybe not. Why does the small intestine choose to be bothered by some things and is fine with others? Maybe when the small intestine is damaged it malabsorbs some vitamins and minerals more than others. Just thinking out loud.
I meet with my naturopath on Monday so should get more info. I think she wants to supplement with a compounded prescription for the specific amino acids that I am not making. I am still in shock over how much of a difference this is making and still keeping my fingers crossed.
Thanks for all the good wishes. Love, Cristi
Hi,
Well, my pyrroles test came back negative. I was so sure as these symptoms so matched my own. I also got results back from my plasma and 24 hour urine amino acid tests. All of the amino acids that need B6 to form measured between 2 and 15th percentile. So I am definitely having problems around this area. My naturopath called the lab that performed the test and they said there are many binding problems, but it is only the pyrrole binding problem that they know how to test for. There is another test that tests for B6 saturation to determine what dose I need to take to absorb enough. So, I guess that's the next step. Another possible explanation is that I tested very low in lysine and apparently one needs this to absorb B6. The lab said malabsorption probably due to lack of stomach acid. I've tried this in the past and it burned all the way through me, but that has been a while ago so I may need to try again.
So I am now taking a compounded amino acid and I am feeling stronger...much less fatigue. But I was still having cramps or snakes as Tex calls them. Could lack of stomach acid cause hard painful intestines?
Last week I started taking cal/mag/zinc supplements. I noticed the cramps were a lot better on this supplement....but the magnesium gave me D. SO, I ordered magnesium oil which bypasses the intestines and is not supposed to give me D. Apparently I am pretty gullible so I am hoping it is not snake oil. I have had a couple of days without the snakes... but it's too soon to tell.
The journey continues.
Love,
Cristi
Well, my pyrroles test came back negative. I was so sure as these symptoms so matched my own. I also got results back from my plasma and 24 hour urine amino acid tests. All of the amino acids that need B6 to form measured between 2 and 15th percentile. So I am definitely having problems around this area. My naturopath called the lab that performed the test and they said there are many binding problems, but it is only the pyrrole binding problem that they know how to test for. There is another test that tests for B6 saturation to determine what dose I need to take to absorb enough. So, I guess that's the next step. Another possible explanation is that I tested very low in lysine and apparently one needs this to absorb B6. The lab said malabsorption probably due to lack of stomach acid. I've tried this in the past and it burned all the way through me, but that has been a while ago so I may need to try again.
So I am now taking a compounded amino acid and I am feeling stronger...much less fatigue. But I was still having cramps or snakes as Tex calls them. Could lack of stomach acid cause hard painful intestines?
Last week I started taking cal/mag/zinc supplements. I noticed the cramps were a lot better on this supplement....but the magnesium gave me D. SO, I ordered magnesium oil which bypasses the intestines and is not supposed to give me D. Apparently I am pretty gullible so I am hoping it is not snake oil. I have had a couple of days without the snakes... but it's too soon to tell.
The journey continues.
Love,
Cristi
Cristi,
It's never simple, is it.
Low stomach should cause poor digestion, so I would assume that could lead to fermentation, which would result in gas, so theoretically, at least, yes, low stomach acid could cause the problem you describe.
Somewhere, there's a solution, if you can just find it.
Love,
Tex
It's never simple, is it.
Low stomach should cause poor digestion, so I would assume that could lead to fermentation, which would result in gas, so theoretically, at least, yes, low stomach acid could cause the problem you describe.
Somewhere, there's a solution, if you can just find it.
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.