Tex,
A couple of thoughts on the nutrient deficiencies: Did you ever take PPIs or other antacid meds that could have decreased stomach acid, which could alter B12 absorption by disrupting instrinsic factor? Inadequate intake is very likely with B6 and folate - remember that most GF products are not enriched or fortified, so you may actually be at more risk of low levels if you are unable to eat some other naturally rich sources. Many things can interfere with nutrient absorption (other drugs, alcohol, dysbiosis, . . . ) not just malabsorption.
I believe you still eat dairy food, correct? Did you have a negative Enterolab casein test? I recently read about a study done on teens who were asymptomatic but who were allergic to milk as infants and were believed to have outgrown their allergy. It was a small study, but if I remember correctly, half of the participants had intestinal lesions (leaky gut??) believed to be related to the casein. I also have wondered if casein causes neuro problems. My headaches went away went I got off casein - I ate more yogurt and milk than cheese so I don't think the headaches were amine induced.
I had a negative malabsorption test (double DQ 1, same as Polly and Gloria). I also had peripheral neuropathy while on gluten. The buzzing in my hands, feet and lips drove me crazy but stopped fairly quickly after stopping gluten.
Unfortunately, you may never know the cause, but the supplements sound like a good idea to me since you have trouble with veggies and nuts.
Take care,
Mary Beth
If Your MC Is Active, Please Take Vitamins B-6,9 and 12
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Mary Beth,
I've never taken any PPIs, or any other antacids, (other than a few rare tums, when I was in high school). Except for a little homemade wine, (as a cold remedy), when I was in my late teens, I've never ingested any alcohol. I never took any meds while I was reacting or healing, other than an occasional couple of Tylenol capsules. I did take B-12 with folate, after I started the GF diet, and after I was into it about a year, I started taking a multivitamin.
I drank milk most of my life, without any problems. Once my symptoms started, though, I determined that not only did lactose bother me, so did casein, so I cut it out of my diet for several years. I didn't test for casein at Enterolab, because I had been on the diet for over a year and a half, when I first found out about Enterolab. When I had some tests done there, I had been on the diet for almost 3 years. Later, I found that I could eat corn, sugar, milk, and many of the items that I had previously cut out of my diet. I occasionally use a little milk on cereal, or for Carnation Instant Breakfast, these days, but not for any other purpose. Some times I use hemp milk, instead.
That's an interesting point about casein possibly causing neurological problems. A couple of years ago, I stopped using all dairy products for the better part of a year, to see if it might be causing what I thought were arthritis-connected symptoms. The symptoms faded away, but when I started using milk again, they didn't return. Recently, the symptoms are back, but now, (since my diagnosis of PD), I recognize them as stiffness, caused by PD, rather than arthritis. Since the symptoms of PD can wax and wane, that may have tended to confound my "trials", so there probably was a connection - I was just hung up on the wrong disease.
I'm taking these particular supplements, because they have been shown by research, to reverse the damage of peripheral neuropathy, (when it's connected with diabetes). That seems like a tall order, but we'll see, I suppose.
Thanks for your insight,
Tex
I've never taken any PPIs, or any other antacids, (other than a few rare tums, when I was in high school). Except for a little homemade wine, (as a cold remedy), when I was in my late teens, I've never ingested any alcohol. I never took any meds while I was reacting or healing, other than an occasional couple of Tylenol capsules. I did take B-12 with folate, after I started the GF diet, and after I was into it about a year, I started taking a multivitamin.
I drank milk most of my life, without any problems. Once my symptoms started, though, I determined that not only did lactose bother me, so did casein, so I cut it out of my diet for several years. I didn't test for casein at Enterolab, because I had been on the diet for over a year and a half, when I first found out about Enterolab. When I had some tests done there, I had been on the diet for almost 3 years. Later, I found that I could eat corn, sugar, milk, and many of the items that I had previously cut out of my diet. I occasionally use a little milk on cereal, or for Carnation Instant Breakfast, these days, but not for any other purpose. Some times I use hemp milk, instead.
That's an interesting point about casein possibly causing neurological problems. A couple of years ago, I stopped using all dairy products for the better part of a year, to see if it might be causing what I thought were arthritis-connected symptoms. The symptoms faded away, but when I started using milk again, they didn't return. Recently, the symptoms are back, but now, (since my diagnosis of PD), I recognize them as stiffness, caused by PD, rather than arthritis. Since the symptoms of PD can wax and wane, that may have tended to confound my "trials", so there probably was a connection - I was just hung up on the wrong disease.
I'm taking these particular supplements, because they have been shown by research, to reverse the damage of peripheral neuropathy, (when it's connected with diabetes). That seems like a tall order, but we'll see, I suppose.
Thanks for your insight,
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.
Dear Tex,
I am so relieved that you aren't upset with my "off the wall" comment about diets. You are a very very important part of this forum - wouldn't be the same without you.
Now, sometime when you have a free moment (not that important) you mentioned that you might be able to help me out with inserting the cute "emoticons." No rush - let me know when you are free.
Okay, Joan and you too, Tex, perhaps you are both too young to realize that there is a wonderful "blue pill" out there right now that brings lots of happiness to many people - and that is the reason I chose the color "blue pill" (tee hee).
Jerri
I am so relieved that you aren't upset with my "off the wall" comment about diets. You are a very very important part of this forum - wouldn't be the same without you.
Now, sometime when you have a free moment (not that important) you mentioned that you might be able to help me out with inserting the cute "emoticons." No rush - let me know when you are free.
Okay, Joan and you too, Tex, perhaps you are both too young to realize that there is a wonderful "blue pill" out there right now that brings lots of happiness to many people - and that is the reason I chose the color "blue pill" (tee hee).
Jerri
Hi Jerri,
I can't afford to get upset about anything that anyone says about diets, because every one of us has a different idea of what the ideal diet should be - we're all different, and we all eat a different diet, (though some of them might be similar, in many ways).
As far as blue pills are concerned,
I doubt that you could even find a middle school kid, who doesn't know what the "blue pill" represents, these days. 
That's why I think they should be a different color - if someone gets them mixed up, and takes the wrong one, that's going to cause some serious disappointment, or major illness, or both.
I'll go through the procedure for using emoticons here, in case someone else has any questions about it. I've forgotten what the problem was, so try this, as a way to get started: When you get to where you want to place an emoticon in your message, click on the "cat" icon in the group of emoticons to the left of the message-composing window. Be sure to click your mouse solidly, right on the emoticon that you want to transfer into your message. When you do that, the system should automatically place this code in your message: coloncatcolon
except that the word "colon"will be replaced by the symbol ":", (without the quotation marks, of course). Be sure you leave a blank space before the first colon, and after the second one, so that everyone's browser will be able to properly interpret the code, and display the animated cat that the code represents. If it doesn't do that, tell me what it does.
If you click on the "View more Emoticons" link, your browser should open a window with several hundred more emoticons. You can expand the window to make it much easier to see more of the emoticons, to reduce the need to do as much scrolling. If the window doesn't open, you probably have "popups" turned off in your browser. If you don't know how to turn that option on, please advise me as to which browser you are using, (e. g., Internet Explorer, Firefox, Opera, Safari, etc.).
Once you get the code for an emoticon into your message, you can move it anywhere in your message, or duplicate it, by using the "cut", "copy", and/or "paste" functions in your browser. Try it and see what happens, if it doesn't work, tell me what exactly what it does, or doesn't do.
Tex
I can't afford to get upset about anything that anyone says about diets, because every one of us has a different idea of what the ideal diet should be - we're all different, and we all eat a different diet, (though some of them might be similar, in many ways).
As far as blue pills are concerned,
I doubt that you could even find a middle school kid, who doesn't know what the "blue pill" represents, these days. That's why I think they should be a different color - if someone gets them mixed up, and takes the wrong one, that's going to cause some serious disappointment, or major illness, or both.
I'll go through the procedure for using emoticons here, in case someone else has any questions about it. I've forgotten what the problem was, so try this, as a way to get started: When you get to where you want to place an emoticon in your message, click on the "cat" icon in the group of emoticons to the left of the message-composing window. Be sure to click your mouse solidly, right on the emoticon that you want to transfer into your message. When you do that, the system should automatically place this code in your message: coloncatcolon
except that the word "colon"will be replaced by the symbol ":", (without the quotation marks, of course). Be sure you leave a blank space before the first colon, and after the second one, so that everyone's browser will be able to properly interpret the code, and display the animated cat that the code represents. If it doesn't do that, tell me what it does.
If you click on the "View more Emoticons" link, your browser should open a window with several hundred more emoticons. You can expand the window to make it much easier to see more of the emoticons, to reduce the need to do as much scrolling. If the window doesn't open, you probably have "popups" turned off in your browser. If you don't know how to turn that option on, please advise me as to which browser you are using, (e. g., Internet Explorer, Firefox, Opera, Safari, etc.).
Once you get the code for an emoticon into your message, you can move it anywhere in your message, or duplicate it, by using the "cut", "copy", and/or "paste" functions in your browser. Try it and see what happens, if it doesn't work, tell me what exactly what it does, or doesn't do.
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 TEX - HERE GOES NOTHING :
AS PER YOUR INSTRUCTIONS I WILL CLICK ON NEXT
OKAY, THAT WAS DONE. AND I HAVE THE WORK CAT ON THE TEXT - WILL IT SHOW UP WITH THE ACTUAL CAT WHEN I SUBMIT IT?
I WILL NOW TRY ANOTHER ONE RIGHT HERE
THIS SHOULD BE A SMILEY FACE?
I GUESS I WILL GO AHEAD AND SUBMIT THIS AND SEE WHAT HAPPENS.
SINCERELY,
JERRI
AS PER YOUR INSTRUCTIONS I WILL CLICK ON NEXT
OKAY, THAT WAS DONE. AND I HAVE THE WORK CAT ON THE TEXT - WILL IT SHOW UP WITH THE ACTUAL CAT WHEN I SUBMIT IT?I WILL NOW TRY ANOTHER ONE RIGHT HERE
THIS SHOULD BE A SMILEY FACE?I GUESS I WILL GO AHEAD AND SUBMIT THIS AND SEE WHAT HAPPENS.
SINCERELY,
JERRI
Jerri,
It looks fine to me.
Tex
P S Incidentally, FYI, according to internet protocol, using all capitals means you're shouting.
It looks fine to me.
Tex
P S Incidentally, FYI, according to internet protocol, using all capitals means you're shouting.
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 - I was already aware of that as both - my brother-in-law and my granddaughter had already informed me of it. For me it is less movement - when all caps and easier on my crooked arthritic fingers, but will try to use upper and lower case as not everyone is aware of my problem - 
thanks - as usual
Jerri
thanks - as usual
Jerri
Jerri,
Just use all lower case, that's not a problem. Some other members do that already.
You're most welcome,
Tex
Just use all lower case, that's not a problem. Some other members do that already.
You're most welcome,
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.
Soapbox!
I'm always happy to see any discussion about B12 deficiency (and other nutritional deficiency, for that matter). I suffered neurological and other symptomsfor years before being diagnosed with B12 deficiency, and even then I had a low normal level of 294 (150-1100). I'm quite certain I was low in B6 as well, but nothing else was ever tested.
So... if anyone is tested... be sure you are in upper range... certainly above 500 for a B12 level. Anything under 400 is particularly suspicious if neurological symptoms are present. Some labs even footnote to that effect.
A "cause" for me was never found... the pernicious anemia associated antibodies were negative (can be negative 30% of the time), as were gliadin antibodies for that matter. I tried cutting back on the B12 once, thinking it may have been a temporary condition, and my symptoms began to return within weeks. So, the assumption is that I do have pernicious anemia, given that I also have hashimoto's thryoid disease.
My daughter who presented with seizures at age 12 was eventually found to be B6 deficient, too. Her seizures, mood swings, and sleep problems all resolved on B6, which we tried based upon a suggestion from a friend. She also had pins and needles and numbness in her hands... at just age 12. She later tested positive for a condition known as "pyroluria" or "high mauve", which causes a deficiency in b6/zinc and sometimes omega6 (I know... that is unusual). She had other indicators of B6 deficiency, as well, like low ALT/AST. Pyroluria is associated with seizures, food (gluten/casein) sensitivity, serious mood/ psychiatric problems, and sleep disturbances. I have heard of some cases, though, where the "pyroluria" seemed to be situational to gluten sensitivity and resolved on a gluten free diet. This daughter is not gluten free. This is not a condition recognized by mainstream medicine, but it has been treated by "nutritional docs" for decades. All I can say is that it seemed to be accurate for my daughter.
Anyway, B vitamins are extremely important. Some cases of MS and even Alzheimer's may be undiagnosed B12 deficiency.
http://jccglutenfree.googlepages.com/co ... e-dementia
B12 deficiency is grossly underdiagnosed...probably as underdiagnosed as gluten sensitivity/ celiac disease. Most often caused by pernicious anemia~ but I've met people who had h. pylori, gastric bypass, tapeworm, continuous use of acid blockers, nitrous oxide, metformin, and inborn metabolic conditions to blame for their B12 deficiency. And of course, we know that gluten/casein sensitivity can contribute to PN from both a nutritional and immunological basis.
If you or a loved one are experiencing any neurological symptoms (pn, ataxia, cognitive decline, seizures).... check on those B vitamins first!
Cara
So... if anyone is tested... be sure you are in upper range... certainly above 500 for a B12 level. Anything under 400 is particularly suspicious if neurological symptoms are present. Some labs even footnote to that effect.
A "cause" for me was never found... the pernicious anemia associated antibodies were negative (can be negative 30% of the time), as were gliadin antibodies for that matter. I tried cutting back on the B12 once, thinking it may have been a temporary condition, and my symptoms began to return within weeks. So, the assumption is that I do have pernicious anemia, given that I also have hashimoto's thryoid disease.
My daughter who presented with seizures at age 12 was eventually found to be B6 deficient, too. Her seizures, mood swings, and sleep problems all resolved on B6, which we tried based upon a suggestion from a friend. She also had pins and needles and numbness in her hands... at just age 12. She later tested positive for a condition known as "pyroluria" or "high mauve", which causes a deficiency in b6/zinc and sometimes omega6 (I know... that is unusual). She had other indicators of B6 deficiency, as well, like low ALT/AST. Pyroluria is associated with seizures, food (gluten/casein) sensitivity, serious mood/ psychiatric problems, and sleep disturbances. I have heard of some cases, though, where the "pyroluria" seemed to be situational to gluten sensitivity and resolved on a gluten free diet. This daughter is not gluten free. This is not a condition recognized by mainstream medicine, but it has been treated by "nutritional docs" for decades. All I can say is that it seemed to be accurate for my daughter.
Anyway, B vitamins are extremely important. Some cases of MS and even Alzheimer's may be undiagnosed B12 deficiency.
http://jccglutenfree.googlepages.com/co ... e-dementia
Unfortunately the rate of misdiagnosis remains around 5%-10%, indicating that 1 in 20 patients thought to have MS has, instead, a condition resembling MS. Conditions often confused with MS may be inflammatory (systemic lupus erythematosus, Sjogren's syndrome, vasculitis, sarcoidosis, Behcet's disease), infectious (Lyme disease, syphilis, progressive multifocal leukoencephalopathy, HTLV-1 infection, herpes zoster), genetic (lysosomal disorders, adrenoleukodystrophy, mitochondrial disorders, CADASIL), metabolic (vitamin B12 deficiency), neoplastic (CNS lymphoma) and spinal (degenerative and vascular malformations) diseases.
The differential diagnosis of multiple sclerosis: classification and clinical features of relapsing and progressive neurological syndromes.
PMID: 11794488 Nov 2001
B12 deficiency is grossly underdiagnosed...probably as underdiagnosed as gluten sensitivity/ celiac disease. Most often caused by pernicious anemia~ but I've met people who had h. pylori, gastric bypass, tapeworm, continuous use of acid blockers, nitrous oxide, metformin, and inborn metabolic conditions to blame for their B12 deficiency. And of course, we know that gluten/casein sensitivity can contribute to PN from both a nutritional and immunological basis.
If you or a loved one are experiencing any neurological symptoms (pn, ataxia, cognitive decline, seizures).... check on those B vitamins first!
Cara
Jeez Louise, what else can we worry about. I am not being glib I am serious.
My grandma had pernicious anemia and I am hypothyroid. She had major IBS/colitis problems. Sometimes I think I am a hypocondriac, or becoming one.
Paranoia is only the leading edge of the discovery that everything in the world is connected.
Thanks for this information.
Deb
I see I am a Little Blue Penguin now..
My grandma had pernicious anemia and I am hypothyroid. She had major IBS/colitis problems. Sometimes I think I am a hypocondriac, or becoming one.
Paranoia is only the leading edge of the discovery that everything in the world is connected.
Thanks for this information.
Deb
I see I am a Little Blue Penguin now..
Hypothyroid 06/01
LC 12/06
Dwell on the positive.
Happiness is a result of a decision to be happy.
LC 12/06
Dwell on the positive.
Happiness is a result of a decision to be happy.
Hi Tex and friends,
I found this article about absorption and leaky gut. I thought his explanation for cutting out one food only to become intolerant of another was interesting. He says it's because the leaky gut has never healed. Also remember you all talking about the importance of zinc and he seems to agree. http://www.enzymestuff.com/conditionleakygut.htm
Love,
Cristi
I found this article about absorption and leaky gut. I thought his explanation for cutting out one food only to become intolerant of another was interesting. He says it's because the leaky gut has never healed. Also remember you all talking about the importance of zinc and he seems to agree. http://www.enzymestuff.com/conditionleakygut.htm
Love,
Cristi
Hi Friends,
I am taking the test for pyrolyria at the end of this week. I am still missing something. I've exhausted the diet only approach and I fit the symptom list most convincingly. I also took a blood and urine absorption test through my naturopath just to see if absorption is a problem in general. I've gained back 20 lbs of the 40 I lost 4 years ago so I am clearly absorbing something. I did get back my vit D results and although I have been taking 1200 mg for 3 years, I am still too low. I am not a sun person but this summer I purposely let my legs get a lot of sun to soak up the extra D but it doesn't seem to have helped. All that happened with my legs was that they freckled and speckled but didn't tan...which is why I have always stayed out of the sun. I don't know if upping the dose will help if I'm not absorbing the 1200 mg why would I absorb more?
Getting back to the pyroluria which is where zinc and B6 is blocked from being absorbed...Cara is right in that you only read about it on alternative sites. but I did find this that was interesting.
http://www.ncbi.nlm.nih.gov/pubmed/18383989
It is interesting that steroids make it worse and antibiotics make it better. Also, it's connection to gut permeability.
I am off all vitamins and minerals for a week before I do the urine test. The only medication I am on is the low dose naltrexone. I didn't think it would alter the results but now after finding this article I am not so sure as they don't seem to know why certain things alter the hemopyrrole. Before I started the LDN, I didn't dream at all and since starting it I dream all the time. One of the signs that you may have pyroluria was lack of dreams. Man, I hate uncertainty. I know...got to get over that. Let me know if you have any thoughts and I'll keep you all informed when I get my results.
Love,
Cristi
I am taking the test for pyrolyria at the end of this week. I am still missing something. I've exhausted the diet only approach and I fit the symptom list most convincingly. I also took a blood and urine absorption test through my naturopath just to see if absorption is a problem in general. I've gained back 20 lbs of the 40 I lost 4 years ago so I am clearly absorbing something. I did get back my vit D results and although I have been taking 1200 mg for 3 years, I am still too low. I am not a sun person but this summer I purposely let my legs get a lot of sun to soak up the extra D but it doesn't seem to have helped. All that happened with my legs was that they freckled and speckled but didn't tan...which is why I have always stayed out of the sun. I don't know if upping the dose will help if I'm not absorbing the 1200 mg why would I absorb more?
Getting back to the pyroluria which is where zinc and B6 is blocked from being absorbed...Cara is right in that you only read about it on alternative sites. but I did find this that was interesting.
http://www.ncbi.nlm.nih.gov/pubmed/18383989
It is interesting that steroids make it worse and antibiotics make it better. Also, it's connection to gut permeability.
I am off all vitamins and minerals for a week before I do the urine test. The only medication I am on is the low dose naltrexone. I didn't think it would alter the results but now after finding this article I am not so sure as they don't seem to know why certain things alter the hemopyrrole. Before I started the LDN, I didn't dream at all and since starting it I dream all the time. One of the signs that you may have pyroluria was lack of dreams. Man, I hate uncertainty. I know...got to get over that. Let me know if you have any thoughts and I'll keep you all informed when I get my results.
Love,
Cristi
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Hopeliveshere
- Little Blue Penguin
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