I know many of you have various autoimmune stuff, and I'd love to hear your experiences, what led to diagnosis, and how you've gained improved health.
I have always have issues with various things, but lately, they've gotten far worse and more frequent and I'm not sure what is MC related, what is due to malabsorption, and what might be a sign of something else.
I shared in previous threads my frequent struggle with vertigo. This has become more frequent, but is not new. I had this periodically prior to mc, went to the dr, she said I probably had an inner ear virus, told me to take motion sickness pills, and sent me home.
Well, those didn't help, and, not having another explanation thought, well, maybe it's hormonal. ;)
Then, maybe once every three to four months I'd get weird muscle sensations like my muscles were cramping and spasming, although they weren't. I can't quite describe it, but it's on the verge of painful, and it feels like I need to relax my muscles (arms and legs), but they refuse. Normally, this happens in the evening when I'm tired. Once I thought maybe I had a magnesium deficiency and took a bunch of almonds. ;) Although I've always been very active and very healthy (whole foods, low to no processed foods, supplements, etc).
And I've shared how I have and have had joint pain, enough that it led to me stopping training. Also, I shared how maybe a month before my D started, I experienced extreme weakness, going from being able to run 13 miles relatively easily at between 8 and 9 min miles to struggling to run 3. Again, I went to my dr (same one. lol) and he told me runners often experience plateaus and that my energy would return.
Well, it never did, so I quit.
I also have raynaud's, and, well, atrophy that I will not expand on ;) but which the person who dx it said she believed it to be autoimmune related.
And my arms feel like they often go limp and my hands and feet get sort of numb.
As I mentioned, this is getting progressively worse--more frequent and more intense--and I'm trying to find a solution. I did get a bunch of lab work done, and they are testing me for lupus, which I don't believe I have, and vit. B12 def (which I think is possible) but I do wonder if something is going on. I'm a bit worried the drs. will continue to smile, nod, and send me off with a "pill" as this has been the practice so far, and as I'm sure many of you experienced, it took a while for them to dx my lc. And I'm quite ready to get my energy and productivity level back. ;)
Autoimmune stuff/MC/malnourishment
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Jennifer
i have a few medical issues, some were there prior to MC, some have come after.
they all seem to feed off each other a bit.
these days MC issues per say is the least of my worries - BUT i am still prone to episodes of MC Mud type D, if i get too stressed (this can be physical, mental, emotional or a combo of all three). rarely does this last more than 24 hours.
once the gut had healed and i had good MC management, it was mast cells /histamines that caused me major issues, such as vertigo, nausea, vomitting, BP, elevated heart rate.
if you do a search on mast cells /histamines there are quite a few good threads with crucial information. this may explain your current symptoms
joint pain is inflammation. MC is inflammation in the gut, now that my gut is healed and I stick to a strict MC management eating plan (pretty much 355 days of the 365) my gut is no longer the main weak point.
due to kidneyBP issues, fluid and joint pain is a big issue for me, i can not take anti inflamatories or pain meds due to the kidney issues. it has been a big thing for me to accept the physical limitations that come with this.
the other thing - it takes time. since your Dx you have made some changes and it will take a while for the body to heal and adjust to the changes, be patient. Have you read some of the stories in the success stories area? there is one there by Kari ' just do it ' i think it was 12 months of focussed healing and she got her physical stamina back and there is a photo of her at the top of a climb she did.
the medical system struggles to support people with the mixture of issues we have, a GI looks after the gut, a renal guy the kidney, gyno the hormone stuff. unless you are chronically ill in hospital there are no specialists or GP's that are equipped/educated enough to support people like us with multiple symptoms that occur. mindful of the other limitation, if it doesnt show up in a blood/urine/poop test then it mustnt exist!
Educated self management is what has bought most of us good quality of life and wellness.
hope this helps
i have a few medical issues, some were there prior to MC, some have come after.
they all seem to feed off each other a bit.
these days MC issues per say is the least of my worries - BUT i am still prone to episodes of MC Mud type D, if i get too stressed (this can be physical, mental, emotional or a combo of all three). rarely does this last more than 24 hours.
once the gut had healed and i had good MC management, it was mast cells /histamines that caused me major issues, such as vertigo, nausea, vomitting, BP, elevated heart rate.
if you do a search on mast cells /histamines there are quite a few good threads with crucial information. this may explain your current symptoms
joint pain is inflammation. MC is inflammation in the gut, now that my gut is healed and I stick to a strict MC management eating plan (pretty much 355 days of the 365) my gut is no longer the main weak point.
due to kidneyBP issues, fluid and joint pain is a big issue for me, i can not take anti inflamatories or pain meds due to the kidney issues. it has been a big thing for me to accept the physical limitations that come with this.
the other thing - it takes time. since your Dx you have made some changes and it will take a while for the body to heal and adjust to the changes, be patient. Have you read some of the stories in the success stories area? there is one there by Kari ' just do it ' i think it was 12 months of focussed healing and she got her physical stamina back and there is a photo of her at the top of a climb she did.
the medical system struggles to support people with the mixture of issues we have, a GI looks after the gut, a renal guy the kidney, gyno the hormone stuff. unless you are chronically ill in hospital there are no specialists or GP's that are equipped/educated enough to support people like us with multiple symptoms that occur. mindful of the other limitation, if it doesnt show up in a blood/urine/poop test then it mustnt exist!
Educated self management is what has bought most of us good quality of life and wellness.
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Mandy, I have not been tested for lyme. I'll ask my doc about that. I used to rock climb, so I'm sure that could be a possibility, although I don't remember any tick bites.
Thanks, Gabes. I will look into those threads. I'm sorry to hear you have so many challenges! But I love your victorious attitude. :)
Thanks, Gabes. I will look into those threads. I'm sorry to hear you have so many challenges! But I love your victorious attitude. :)
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Jennifer
a search for 'mast cell' bought up 21 pages of threads that discuss mast cell
mast cell /histamine is very common to people on this board
here are some recent discussions with articles
http://www.perskyfarms.com/phpBB2/viewt ... =mast+cell
http://www.perskyfarms.com/phpBB2/viewt ... =mast+cell
http://www.perskyfarms.com/phpBB2/viewt ... =mast+cell
Joe who is NH based put together these articles regarding mast cell - it was this research that helped me to see that the anesthetics i had for colonscopy/then tooth removal/then oral surgery set me into a massive mast cell event.
some of the articles are a bit technical - the part i like is the chart that explains symptoms and what type of histamine reaction it is -H1, H2, H3, H4.
using this chart means knowing why a H1 blocker willl not help with a H3 symptom
if you read all the posts of this thread you will see the various indicators and triggers for mast cell/histamine situations by many of the group
http://www.perskyfarms.com/phpBB2/viewt ... =mast+cell
within this thread, marybeth includes other links and articles- about her theory of MC and mast cells
then Tex talks about his allergy issues of 6 years ago
on page 2 JME22 who spent many years getting a Mast Cell diagnosis puts up her links to articles.
long story short - MC and mast cells is very common..... and many have minimised symptoms via the regular intake of H blockers, and adjusting the eating plan to be low histamine
Members like Gloria, Zizzle, Marybeth, have discussed their mast cell issues frequently over the past 2 years. All have different triggers and symptoms.
gloria was rash
zizzle was (is) rash - slightly different to gloria
marybeth's trigger was exercise.
my main trigger is anesthetic, dental work, any change in body chemisty.
Polly also reacts to dental work and anesthetic
Deep breathes, take your time to read and digest (pun intended) the information -
From the point of view of doctors, they are quite niave on this area of medicine, specialists are rare, good specialists are very rare. the only way to know it is happening, is to have a blood test whilst the symptoms are at their height. a blood test 4 hours later may not show anything. IMO this is a big reason why doctors struggle to acknowledge it
a search for 'mast cell' bought up 21 pages of threads that discuss mast cell
mast cell /histamine is very common to people on this board
here are some recent discussions with articles
http://www.perskyfarms.com/phpBB2/viewt ... =mast+cell
http://www.perskyfarms.com/phpBB2/viewt ... =mast+cell
http://www.perskyfarms.com/phpBB2/viewt ... =mast+cell
Joe who is NH based put together these articles regarding mast cell - it was this research that helped me to see that the anesthetics i had for colonscopy/then tooth removal/then oral surgery set me into a massive mast cell event.
some of the articles are a bit technical - the part i like is the chart that explains symptoms and what type of histamine reaction it is -H1, H2, H3, H4.
using this chart means knowing why a H1 blocker willl not help with a H3 symptom
if you read all the posts of this thread you will see the various indicators and triggers for mast cell/histamine situations by many of the group
http://www.perskyfarms.com/phpBB2/viewt ... =mast+cell
within this thread, marybeth includes other links and articles- about her theory of MC and mast cells
then Tex talks about his allergy issues of 6 years ago
on page 2 JME22 who spent many years getting a Mast Cell diagnosis puts up her links to articles.
long story short - MC and mast cells is very common..... and many have minimised symptoms via the regular intake of H blockers, and adjusting the eating plan to be low histamine
Members like Gloria, Zizzle, Marybeth, have discussed their mast cell issues frequently over the past 2 years. All have different triggers and symptoms.
gloria was rash
zizzle was (is) rash - slightly different to gloria
marybeth's trigger was exercise.
my main trigger is anesthetic, dental work, any change in body chemisty.
Polly also reacts to dental work and anesthetic
Deep breathes, take your time to read and digest (pun intended) the information -
From the point of view of doctors, they are quite niave on this area of medicine, specialists are rare, good specialists are very rare. the only way to know it is happening, is to have a blood test whilst the symptoms are at their height. a blood test 4 hours later may not show anything. IMO this is a big reason why doctors struggle to acknowledge it
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I still believe that the beta blockers that my cardio doctor put me on triggered my MC. I do remember a thread where someone said that the beta blockers could have been a mast cell issue and that it was wise to take some other kind of med while taking the beta blockers. I can't remember the name of the med though and I doubt I can find that thread again....though I will look. I really need to be on something to lower my heart rate but totally terrified that it will trigger my disease active once again. Don't know what to do!! Anything ending in "lol" seems to really get to me. Toprol, Antenol all of them! My resting heart rate is in the 90's and sometimes over 100. So frustrating.
Thanks
Terri
Thanks
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Jennifer,
I've had Undifferentiated Connective Tissue Disease (UCTD) since the birth of my first child 8 years ago. It started as a year-long itchy rash, which in retrospect, was Dermatomyositis, something I was officially diagnosed with last year.
I've had very high ANA (speckled), Anti-Smooth Muscle Antibody (associated with AI hepatitis) and Rheumatoid Factor all this time, but no progression of other antibodies, thank goodness. After learning I had LC 3.5 years ago, it took me a year to determine I had to go GF/DF/SF (found this forum very late in that process! Could have saved me lots of time!!). I also got genetic testing which showed I had the celiac gene that predisposes to all sorts of autoimmune diseases (HLADQ 2.5). I also knew I had Joint Hypermobility Syndrome since my teens, but never made the connection to Ehlers Danlos Syndrome and all the associated symptoms, including GI and mast cell/dysautonomia issues. This may be one of the sources of my intestinal permeability...
AI disease is no fun, and I am doing my darndest to battle it with alternative therapies and diet (acupuncture, herbs, supplements, probiotics, anti-inflammatory diet, etc). I am confident if it weren't for my efforts so far, my DM would be much more advanced -- like the people I read about on patient forums. Most of them are on a toxic mix of 2-4 drugs (methotrexate, prednisone, CellCept, and Plaquenil) and still don't have their disease under control. I finally had to resort to prednisone and Plaquenil to get a year-long skin flare under control.
I do believe my case has an infectious/viral component (not just the initial trigger), probably Epstein Barr Virus, maybe Parvovirus B19. Many AI patients have lyme disease or similar infections. All I know is my lymphocytes are out of control, and are battling something in the surface layers of my skin and gut mucosa (and that makes me a lucky case, no muscle or joint involvement). I also am allergic to nickel, which I've learned means I am probably sensitive to many other metals, including mercury, cobalt, etc.
Somethiing else I'm looking into now is the possibility that I carry a MTHFR gene mutation, which affects your body's ability to process folic acid (and ultimately impacts your glutathione production and homocysteine levels). Apparently 40% of us carry some form of the mutation, and it may mean we need to supplement with a bioavavailable form of folic acid (Methyfolate - easy to buy).
Anyway, I'm trying to tackle this from all possible angles. There may be a smoking gun, but until I find it, all possibilities are on the table!
I've had Undifferentiated Connective Tissue Disease (UCTD) since the birth of my first child 8 years ago. It started as a year-long itchy rash, which in retrospect, was Dermatomyositis, something I was officially diagnosed with last year.
I've had very high ANA (speckled), Anti-Smooth Muscle Antibody (associated with AI hepatitis) and Rheumatoid Factor all this time, but no progression of other antibodies, thank goodness. After learning I had LC 3.5 years ago, it took me a year to determine I had to go GF/DF/SF (found this forum very late in that process! Could have saved me lots of time!!). I also got genetic testing which showed I had the celiac gene that predisposes to all sorts of autoimmune diseases (HLADQ 2.5). I also knew I had Joint Hypermobility Syndrome since my teens, but never made the connection to Ehlers Danlos Syndrome and all the associated symptoms, including GI and mast cell/dysautonomia issues. This may be one of the sources of my intestinal permeability...AI disease is no fun, and I am doing my darndest to battle it with alternative therapies and diet (acupuncture, herbs, supplements, probiotics, anti-inflammatory diet, etc). I am confident if it weren't for my efforts so far, my DM would be much more advanced -- like the people I read about on patient forums. Most of them are on a toxic mix of 2-4 drugs (methotrexate, prednisone, CellCept, and Plaquenil) and still don't have their disease under control. I finally had to resort to prednisone and Plaquenil to get a year-long skin flare under control.
I do believe my case has an infectious/viral component (not just the initial trigger), probably Epstein Barr Virus, maybe Parvovirus B19. Many AI patients have lyme disease or similar infections. All I know is my lymphocytes are out of control, and are battling something in the surface layers of my skin and gut mucosa (and that makes me a lucky case, no muscle or joint involvement). I also am allergic to nickel, which I've learned means I am probably sensitive to many other metals, including mercury, cobalt, etc.
Somethiing else I'm looking into now is the possibility that I carry a MTHFR gene mutation, which affects your body's ability to process folic acid (and ultimately impacts your glutathione production and homocysteine levels). Apparently 40% of us carry some form of the mutation, and it may mean we need to supplement with a bioavavailable form of folic acid (Methyfolate - easy to buy).
Anyway, I'm trying to tackle this from all possible angles. There may be a smoking gun, but until I find it, all possibilities are on the table!