A while ago, I related that I had spoken to my Rheumy and my GI docs asking if it was possible that my collagenous colitis could be related to my fairly mild, genetic Joint Hypermobility Syndrome. Makes sense that there's a relationship because they both indicate a defect in collagen throughout the body.
Of course, both of them looked at me like I had 2 heads, got out their prescription pads, and prescribed various drugs for the "unrelated" conditions.
And, of course, I would dearly love to wean off these powerful drugs. The elimination diet is improving my condition and I'm hopeful that, over time, many of my "unrelated" symptoms will improve.
Tex or anyone else - can you site any research that shows these 2 conditions to be related? It would be somewhat helpful (one hopes!) in talking to my doctors.
thanks!
connection between CC and Joint Hypermobility?
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Hi,
There are occasional comments about it on the Internet, but I'm not aware of any specific research that would connect the 2 issues.
That said, it seems rather obvious to me (of course I'm not a doctor — my training is in engineering). The basic structure that holds our cells in position, and prevents our body from just collapsing into a heap of individual cells on the floor, is based on background membranes and a network of connective tissue, all made of collagen. Connective tissue disorders occur because of collagen dysplasia. Since collagenous colitis involves collagen dysplasia, if that doesn't make it a connective tissue disorder, I'm a monkey's uncle.
And of course hypermobility syndrome is obviously a connective tissue disorder.
Doctors don't don't like to think out of the box, and they're not trained to think out of the box. Medicine is a very regimented profession (mostly because it is so highly regulated), compared with others. If a concept isn't pounded into doctors' brains in med school, or by continued education from a drug rep,
it doesn't exist (as far as they are concerned), and it's not even on their radar.
Zizzle has done a lot of research on possible connections. She has relatively severe hypermobility problems and related satellite issues. If she doesn't notice your post and respond, you might do a search of the archives for some of her old posts about this.
Tex
There are occasional comments about it on the Internet, but I'm not aware of any specific research that would connect the 2 issues.
That said, it seems rather obvious to me (of course I'm not a doctor — my training is in engineering). The basic structure that holds our cells in position, and prevents our body from just collapsing into a heap of individual cells on the floor, is based on background membranes and a network of connective tissue, all made of collagen. Connective tissue disorders occur because of collagen dysplasia. Since collagenous colitis involves collagen dysplasia, if that doesn't make it a connective tissue disorder, I'm a monkey's uncle.
And of course hypermobility syndrome is obviously a connective tissue disorder.Doctors don't don't like to think out of the box, and they're not trained to think out of the box. Medicine is a very regimented profession (mostly because it is so highly regulated), compared with others. If a concept isn't pounded into doctors' brains in med school, or by continued education from a drug rep,
it doesn't exist (as far as they are concerned), and it's not even on their radar.Zizzle has done a lot of research on possible connections. She has relatively severe hypermobility problems and related satellite issues. If she doesn't notice your post and respond, you might do a search of the archives for some of her old posts about this.
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 Hopeful!
I too have hypermobility syndrome. I have had mild issues since adolescence, mostly in my hips, and had pelvic separation in my pregnancies (not fun, but my kids flew out in 2 pushes!). Many people with hypermobility or EDS suffer from gastrointestinal issues like gastroparesis (slow emptying) and IBS. Many also have dysautonomia which can affect motility (I have very low BP, slow heart rate, and low body temp, but thankfully not full-blown POTS. I think the dysregulation of the nervous system can also lead to sudden needs to go to the bathroom - like in response to smells in a department store, etc.) I've had IBS since my 20's, but probably due to GI infections abroad, too many antibiotics, and celiac genetics. The same genes that predispose me to celiac and autoimmune disease reside on chromosome 6, where hypermobility genes also live, so there is a connection. I'm certain my faulty collagen laid the foundation for leaky gut.
Thankfully, I take Low Dose Naltrexone, which has almost fully corrected my dysautonomia symptoms and my autoimmune disease. Unfortunately, I don't think it's correcting the gut dysbiosis (bacterial imbalance or immune reaction to one or more of my resident gut bacteria) that's causing most of my remaining colitis symptoms.
I too have hypermobility syndrome. I have had mild issues since adolescence, mostly in my hips, and had pelvic separation in my pregnancies (not fun, but my kids flew out in 2 pushes!). Many people with hypermobility or EDS suffer from gastrointestinal issues like gastroparesis (slow emptying) and IBS. Many also have dysautonomia which can affect motility (I have very low BP, slow heart rate, and low body temp, but thankfully not full-blown POTS. I think the dysregulation of the nervous system can also lead to sudden needs to go to the bathroom - like in response to smells in a department store, etc.) I've had IBS since my 20's, but probably due to GI infections abroad, too many antibiotics, and celiac genetics. The same genes that predispose me to celiac and autoimmune disease reside on chromosome 6, where hypermobility genes also live, so there is a connection. I'm certain my faulty collagen laid the foundation for leaky gut.
Thankfully, I take Low Dose Naltrexone, which has almost fully corrected my dysautonomia symptoms and my autoimmune disease. Unfortunately, I don't think it's correcting the gut dysbiosis (bacterial imbalance or immune reaction to one or more of my resident gut bacteria) that's causing most of my remaining colitis symptoms.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Wow - thanks for all the information, Zizzle!
My hypermobility is described as relatively mild, but it does run in my family (mostly on my dad's side). I have always been very flexible but not circus-grade level. I also have a fairly mild mitral valve regurgitation (too stretchy). My rheumy has been somewhat helpful on explaining all this, but he's not clear on how it relates to the Sjorgrens, Raynaud's, collagenous colitis, etc. Some markers for Lupus and fibromyalgia.
He has me on celebrex for generalized aches and pains and hydroxychloroquine to supposedly slow down the progression of the auto-immune stuff. The GI has me on Entecort and Lialda (2.5 years) which I'm trying to wean from with very strict diet. For that matter, I'd like to be off ALL meds, but I could be too hopeful on that...
What is the function of Naltrexone? Do you have doctors that understand the interconnectedness of all these syndromes?
I really appreciate your help...
My hypermobility is described as relatively mild, but it does run in my family (mostly on my dad's side). I have always been very flexible but not circus-grade level. I also have a fairly mild mitral valve regurgitation (too stretchy). My rheumy has been somewhat helpful on explaining all this, but he's not clear on how it relates to the Sjorgrens, Raynaud's, collagenous colitis, etc. Some markers for Lupus and fibromyalgia.
He has me on celebrex for generalized aches and pains and hydroxychloroquine to supposedly slow down the progression of the auto-immune stuff. The GI has me on Entecort and Lialda (2.5 years) which I'm trying to wean from with very strict diet. For that matter, I'd like to be off ALL meds, but I could be too hopeful on that...
What is the function of Naltrexone? Do you have doctors that understand the interconnectedness of all these syndromes?
I really appreciate your help...
Hopeful,
Are you aware that NSAIDs are contraindicated for MC? For many of us they would trigger a flare would make remission an impossible goal.
You can find some basic information on the use of Low Dose Naltrexone at the link below. Basically, it is used to reset the immune system on a daily basis (during the wee hours of the morning), and it has been shown to be effective for many AI issues, such as MS, RA, etc.
http://www.ldnresearchtrustfiles.co.uk/ ... 281%29.pdf
Tex
Are you aware that NSAIDs are contraindicated for MC? For many of us they would trigger a flare would make remission an impossible goal.
You can find some basic information on the use of Low Dose Naltrexone at the link below. Basically, it is used to reset the immune system on a daily basis (during the wee hours of the morning), and it has been shown to be effective for many AI issues, such as MS, RA, etc.
http://www.ldnresearchtrustfiles.co.uk/ ... 281%29.pdf
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.
Thanks for the link, Tex - helpful.
And yes, am aware of the NSAID connection. My GI put me on Celebrex so that I wouldn't need NSAID'S. I think that you're saying that celebrex is also an NSAID - correct? In the long cold weather here the pain becomes really debilitating. The celebrex seems to take the edge off. Do you have other suggestions?
And yes, am aware of the NSAID connection. My GI put me on Celebrex so that I wouldn't need NSAID'S. I think that you're saying that celebrex is also an NSAID - correct? In the long cold weather here the pain becomes really debilitating. The celebrex seems to take the edge off. Do you have other suggestions?
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Celebrex is definitely an nsaid. Your doc is really clueless. Many of us here have found that our joint pain issues have gone away after staying on a diet that eliminates gluten, dairy and our other sensitivities. While my problems were relatively mild and only affected my finger joints, removing the big four from my diet along with other foods that I was sensitive to has virtually eliminated the joint pain in my fingers.
Hopeful. Yes, as Jean has already verified, Celebrex is definitely a non-steroidal anti-inflammatory drug.
Safe alternatives (safe as far as MC is concerned, anyway) are acetaminophen (but it carries a risk of kidney damage if taken with alcohol, or if overdosed), tramadol, and narcotic painkillers. Many members seem to find tamadol to be a good alternative.
Some of the topical analgesics work satisfactorily, also. In fact, if I recall correctly, someone posted that they used a topical NSAID without any problems. Check out this article from the Mayo Clinic:
Topical Analgesics in the Management of Acute and Chronic Pain
Tex
Safe alternatives (safe as far as MC is concerned, anyway) are acetaminophen (but it carries a risk of kidney damage if taken with alcohol, or if overdosed), tramadol, and narcotic painkillers. Many members seem to find tamadol to be a good alternative.
Some of the topical analgesics work satisfactorily, also. In fact, if I recall correctly, someone posted that they used a topical NSAID without any problems. Check out this article from the Mayo Clinic:
Topical Analgesics in the Management of Acute and Chronic Pain
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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Gabes-Apg
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I vote for taking good doses of;
magnesium, small amount orally, large amount topically via skin, (to avoid D)
Vit D3, zinc and Vit C.
These will help reduce inflammation, clear toxins that are causing the pain.
Ceasing gluten, removing other major triggers, eating low inflammation eating plan, within 3-6 weeks pain should be vastly reduced...
Keep this up and Within 12 -16 weeks the need for painkillers should be minimal
magnesium, small amount orally, large amount topically via skin, (to avoid D)
Vit D3, zinc and Vit C.
These will help reduce inflammation, clear toxins that are causing the pain.
Ceasing gluten, removing other major triggers, eating low inflammation eating plan, within 3-6 weeks pain should be vastly reduced...
Keep this up and Within 12 -16 weeks the need for painkillers should be minimal
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks, guys!
Cold weather is already setting in, but I'll try eliminating the celebrex.
I am on week 3 of very strict elimination diet.
2 questions: I have severe nocturnal leg cramps. Taking potassium and 400 mg. of magnesium (still have D). Should I try the topical mag.?
I have seen a lot of talk about the LDN and the link that Tex sent sounds intriguing to be sure. How can I talk my rheumy, GP, or GI docs into prescribing this??
Cold weather is already setting in, but I'll try eliminating the celebrex.
I am on week 3 of very strict elimination diet.
2 questions: I have severe nocturnal leg cramps. Taking potassium and 400 mg. of magnesium (still have D). Should I try the topical mag.?
I have seen a lot of talk about the LDN and the link that Tex sent sounds intriguing to be sure. How can I talk my rheumy, GP, or GI docs into prescribing this??
Also, regarding leg or foot cramps, make sure that you are not dehydrated. That can also cause similar cramps. I have an ileostomy, so I have to be extra careful to avoid dehydration (since without a colon I have no way to recycle water). I have been awakened in the wee hours of the morning by foot/leg cramps that I resolved simply by taking a few good swallows of water. But I also find it necessary to take 400 mg of magnesium citrate every day, to prevent foot/leg cramps due to magnesium deficiency as a result of my limited diet. I wouldn't recommend 400 mg of magnesium citrate for anyone still recovering however, because that may be enough to act as a laxative. Instead, I agree with the recommendations made by Gabes and Jean for using magnesium glycinate and/or topical magnesium.
Tex
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.