Hello all, I've been lurking around your site for a bit, and it's about time to get involved in the discussions. Some highlights of my journey here...
Age 6... dx with "nervous tummy"
Age 17... dx with IBS
(lots of getting sick/getting better in between here)
Age 37... my dad was diagnosed with celiac; I did a gluten test, no celiac disease found via blood test or endoscopy
Age 41... fibroid, ovarian cysts, recommendation for a hysterectomy
Age 42... gluten test, upper and lower endoscopies; no celiac disease found, but CC and limited LC found; flare successfully treated with pepto
Age 42 (later that year)... hysterectomy, significant endometriosis found on my bowels, ovaries removed to prevent progression of endo
and now, another flare, after a root canal, a round of antibiotics, and some ibuprofen for severe pain. I'm also having A LOT of lower back pain, which I attribute to the MC flare-up.
I've been back on the pepto for a week, so I'm playing the waiting game for a bit. I'm trying to manage the urgency using dicyclomine.
I've got a lot of research ahead of me on this site, but one question that I'd like to pose: how do you manage pain?
TIA,
Chris
Hi, I'm new!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Chris,
Welcome to our Internet family. As you have discovered, the problem with the way that physicians handle celiac disease is that they are unable to diagnose it until after the damage to our intestines has accumulated for many years, so that the damage finally becomes severe enough (and obvious enough) that it meets their criteria for a diagnosis. The inflammation damage from gluten sensitivity can be detected relatively early as a Marsh I stage of damage. At this stage of damage, the diagnostic marker is the same as with MC — lymphocytic infiltration into the epithelial lining of the intestine (in this case the small intestine), mostly in the tips of the villi. But their obsolete diagnostic criteria demand that the level of damage must reach a Marsh III level of damage (villus flattening) before they can officially diagnose celiac disease. As a result, patients suffer for many years, continuing to accumulate damage to their intestine until a diagnosis is eventually made. This is why approximately 95 % of celaic cases are never officially diagnosed.
But an even bigger problem is that with MC, the type of damage we have is caused by non-celiac gluten sensitivity, and when we have non-celiac gluten sensitivity we can never be officially diagnosed, simply because the medical community does not have an officially-approved test for detecting non-celiac gluten sensitivity. Is that ridiculous or what? With non-celiac gluten sensitivity the level of small intestinal damage typically does not exceed a Marsh I level of damage, so this prevents an official diagnosis, even though we are at least as sensitive to gluten as the average celiac.
Undiagnosed (and consequently untreated) gluten sensitivity guarantees the perpetuation of chronic inflammation, and chronic inflammation is the cause of all autoimmune diseases and most other diseases (including heart disease and cancer).
You are quite correct that antibiotics and NSAIDs are major causes of MC flares. To answer your question about treating pain, the only analgesics that do not aggravate MC are acetaminophen, tramadol, and opioids. Some members here have found that topically-applied NSAIDs can sometimes help when applied to the skin over the affected area, and when topically applied they typically do not cause digestive system problems.
Please be aware that anticholenergics (including dicyclomine) have been associated with a seriously increased risk of the development of age-related dementia, including Alzheimer's, when the total accumulated dose (lifetime accumulation) exceeds a certain threshold. Here's a reference on that:
Or you can read the full article at the link below, if you prefer:
http://archinte.jamanetwork.com/article ... id=2091745
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. As you have discovered, the problem with the way that physicians handle celiac disease is that they are unable to diagnose it until after the damage to our intestines has accumulated for many years, so that the damage finally becomes severe enough (and obvious enough) that it meets their criteria for a diagnosis. The inflammation damage from gluten sensitivity can be detected relatively early as a Marsh I stage of damage. At this stage of damage, the diagnostic marker is the same as with MC — lymphocytic infiltration into the epithelial lining of the intestine (in this case the small intestine), mostly in the tips of the villi. But their obsolete diagnostic criteria demand that the level of damage must reach a Marsh III level of damage (villus flattening) before they can officially diagnose celiac disease. As a result, patients suffer for many years, continuing to accumulate damage to their intestine until a diagnosis is eventually made. This is why approximately 95 % of celaic cases are never officially diagnosed.
But an even bigger problem is that with MC, the type of damage we have is caused by non-celiac gluten sensitivity, and when we have non-celiac gluten sensitivity we can never be officially diagnosed, simply because the medical community does not have an officially-approved test for detecting non-celiac gluten sensitivity. Is that ridiculous or what? With non-celiac gluten sensitivity the level of small intestinal damage typically does not exceed a Marsh I level of damage, so this prevents an official diagnosis, even though we are at least as sensitive to gluten as the average celiac.
Undiagnosed (and consequently untreated) gluten sensitivity guarantees the perpetuation of chronic inflammation, and chronic inflammation is the cause of all autoimmune diseases and most other diseases (including heart disease and cancer).
You are quite correct that antibiotics and NSAIDs are major causes of MC flares. To answer your question about treating pain, the only analgesics that do not aggravate MC are acetaminophen, tramadol, and opioids. Some members here have found that topically-applied NSAIDs can sometimes help when applied to the skin over the affected area, and when topically applied they typically do not cause digestive system problems.
Please be aware that anticholenergics (including dicyclomine) have been associated with a seriously increased risk of the development of age-related dementia, including Alzheimer's, when the total accumulated dose (lifetime accumulation) exceeds a certain threshold. Here's a reference on that:
Cumulative use of strong anticholinergics and incident dementia: a prospective cohort study.RESULTS: The most common anticholinergic classes used were tricyclic antidepressants, first-generation antihistamines, and bladder antimuscarinics. During a mean follow-up of 7.3 years, 797 participants (23.2%) developed dementia (637 of these [79.9%] developed Alzheimer disease). A 10-year cumulative dose-response relationship was observed for dementia and Alzheimer disease (test for trend, P < .001). For dementia, adjusted hazard ratios for cumulative anticholinergic use compared with nonuse were 0.92 (95% CI, 0.74-1.16) for TSDDs of 1 to 90; 1.19 (95% CI, 0.94-1.51) for TSDDs of 91 to 365; 1.23 (95% CI, 0.94-1.62) for TSDDs of 366 to 1095; and 1.54 (95% CI, 1.21-1.96) for TSDDs greater than 1095. A similar pattern of results was noted for Alzheimer disease. Results were robust in secondary, sensitivity, and post hoc analyses.
CONCLUSIONS AND RELEVANCE: Higher cumulative anticholinergic use is associated with an increased risk for dementia. Efforts to increase awareness among health care professionals and older adults about this potential medication-related risk are important to minimize anticholinergic use over time.
Or you can read the full article at the link below, if you prefer:
http://archinte.jamanetwork.com/article ... id=2091745
Again, welcome aboard, and please feel free to ask anything.
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.
Thank you so much for the tip on anticholenergics! I've noticed that they leave me feeling a little spacey. I don't need any more risk factors for Alzheimer's disease; I just read an article associating surgical menopause with both cognitive decline and Alzheimer's Disease.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3902759/
And frankly, since my surgery, I have felt like I've done gone stupid. It's frustrating, and it's scary. :S
I appreciate your discussion on the diagnosis of celiac. People (medical and non-medical types) don't take non-celiac gluten sensitivity seriously. I'm grateful that my GI hasn't found damaged villi, but geez, the absence of damaged villi doesn't mean that nothing is wrong. My dad has commented many times that he has never had as much problem getting sick as me. It has really impacted my quality of life.
I've been doing some research on managing symptoms here in the forums. I'm most intrigued by bile acid sequestrants. And some of the posts about diet are really helpful.
Looking forward to interacting with a group of people who understand. Thank you!
Chris
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3902759/
And frankly, since my surgery, I have felt like I've done gone stupid. It's frustrating, and it's scary. :S
I appreciate your discussion on the diagnosis of celiac. People (medical and non-medical types) don't take non-celiac gluten sensitivity seriously. I'm grateful that my GI hasn't found damaged villi, but geez, the absence of damaged villi doesn't mean that nothing is wrong. My dad has commented many times that he has never had as much problem getting sick as me. It has really impacted my quality of life.
I've been doing some research on managing symptoms here in the forums. I'm most intrigued by bile acid sequestrants. And some of the posts about diet are really helpful.
Looking forward to interacting with a group of people who understand. Thank you!
Chris
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Chris
welcome to our group
and glad you decided to post!
your time line of health issues is very similar to mine!
regarding the pain, I had severe cramping pain, sometimes to the extent that I could not stand up and it would take 5 minutes of rest for it to pass that I could actually stand again, once I got the MC diagnosis, and removed the major triggers, the pain went away. (additionally my bowel is adhered to my left ovary)
minimising inflammation and therefore minimising pain episodes, is one of the motivators for me to stay with my MC management eating plan.
As you may have seen in some of your reading, going 100% gluten free and dairy free is a good way to reduce inflammation and in your case reduce the pain and cramping. Also having low fibre meals, bland, well cooked protein and safe veges is a good basis and will help you get some quality of life back...
the other essential aspect, as you may have seen in your reading, is Vit D3 and magnesium. Have you had your Vit D3 level checked in the past 12 months?
good luck for your healing journey
welcome to our group
and glad you decided to post!
your time line of health issues is very similar to mine!
regarding the pain, I had severe cramping pain, sometimes to the extent that I could not stand up and it would take 5 minutes of rest for it to pass that I could actually stand again, once I got the MC diagnosis, and removed the major triggers, the pain went away. (additionally my bowel is adhered to my left ovary)
minimising inflammation and therefore minimising pain episodes, is one of the motivators for me to stay with my MC management eating plan.
As you may have seen in some of your reading, going 100% gluten free and dairy free is a good way to reduce inflammation and in your case reduce the pain and cramping. Also having low fibre meals, bland, well cooked protein and safe veges is a good basis and will help you get some quality of life back...
the other essential aspect, as you may have seen in your reading, is Vit D3 and magnesium. Have you had your Vit D3 level checked in the past 12 months?
good luck for your healing journey
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes:
I've been making a conscious effort to eat anti-inflammtory (bye-bye, sugar) for the past few months. Sometimes, I cheat, but it's definitely going in the right direction. Gluten has been out for 5+ years (with the exception of the gluten tests), although I'm not very careful about cross-contamination. I need to make a more concerted effort toward dairy. I don't eat very much, but I'm having a hard time giving up half- and half in my coffee (decaf - although that should maybe go, too).
I had my vit D3 checked in Dec 2015, and it was low - 35 ng/mL. Technically, it's in the range, but I'm taking 8000 IU a day to get it at a more optimal level.
I usually take magnesium, but I get a little scared when I start having all of the D; I've been skipping it lately. I usually take a mag/potassium/bromelain supplement before bed. I've taken straight mg glycinate before, but I switched to this b/c of the potential help with muscle cramps (from the potassium/bromelain).
And then there's the fish oil... I recently upped my dose from 2400 mg/d to 4800 mg/d. And finally there's the turmeric.
So I'm hoping that this will help with long-term inflammation. But I haven't been that strict with the diet lately. It's a healthy diet, but I need to ditch my spinach salad and raw veggies for lunch and dial it back to more bland meals and well-cooked soluble-fiber type veggies. When I have a flare-up, I'm also feeling pretty down. And when I'm feeling down, I'm not as disciplined as I should be with my diet. {sigh} Time to get serious again.
I'm sad to hear about your ovary being adhered to your bowel; at the same time, it's comforting to know that I'm not alone. The endo dx was something that I had asked about for years and years. I couldn't get a doc to take it seriously. And finally the surgeon found it when she went in for a hysterectomy - my uterus was adhered to my bowels with my ovaries sandwiched in between. I still am a little bitter about that. It's frustrating how much our difficulties can be minimized by the medical community.
Thank you for your insight. I read your post for newbies before I decided to join, and it really helps to have access to this groups support and collective knowledge.
Chris
I've been making a conscious effort to eat anti-inflammtory (bye-bye, sugar) for the past few months. Sometimes, I cheat, but it's definitely going in the right direction. Gluten has been out for 5+ years (with the exception of the gluten tests), although I'm not very careful about cross-contamination. I need to make a more concerted effort toward dairy. I don't eat very much, but I'm having a hard time giving up half- and half in my coffee (decaf - although that should maybe go, too).
I had my vit D3 checked in Dec 2015, and it was low - 35 ng/mL. Technically, it's in the range, but I'm taking 8000 IU a day to get it at a more optimal level.
I usually take magnesium, but I get a little scared when I start having all of the D; I've been skipping it lately. I usually take a mag/potassium/bromelain supplement before bed. I've taken straight mg glycinate before, but I switched to this b/c of the potential help with muscle cramps (from the potassium/bromelain).
And then there's the fish oil... I recently upped my dose from 2400 mg/d to 4800 mg/d. And finally there's the turmeric.
So I'm hoping that this will help with long-term inflammation. But I haven't been that strict with the diet lately. It's a healthy diet, but I need to ditch my spinach salad and raw veggies for lunch and dial it back to more bland meals and well-cooked soluble-fiber type veggies. When I have a flare-up, I'm also feeling pretty down. And when I'm feeling down, I'm not as disciplined as I should be with my diet. {sigh} Time to get serious again.
I'm sad to hear about your ovary being adhered to your bowel; at the same time, it's comforting to know that I'm not alone. The endo dx was something that I had asked about for years and years. I couldn't get a doc to take it seriously. And finally the surgeon found it when she went in for a hysterectomy - my uterus was adhered to my bowels with my ovaries sandwiched in between. I still am a little bitter about that. It's frustrating how much our difficulties can be minimized by the medical community.
Thank you for your insight. I read your post for newbies before I decided to join, and it really helps to have access to this groups support and collective knowledge.
Chris
Hi, Chris. Welcome to our group. You've come to the right place for advice & support. Some on here use magnesium spray. I use a gel that I put on my thighs at bedtime. It definitely helps me to sleep better. Best wishes on your road to healing.
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
Welcome Chris :-)
Don't be afraid of the Topical Magnesium...I am learning that with my history of hormonal migraines that I really do need to keep up on the higher end magnesium dosage because I have just gone thru a pretty bad spell of a migraine these last two days. I used to take (external and internal total) around 800-900 mg a day so it appears I need to be closer to that amount than I thought.
I hope you feel better soon! I know talking about MC stuff isn't very fun, but it sure has helped a lot of us to feel more normal when we do ;-)
I've been a sensitive tummy person most my life too....
Cheers
Erica
Don't be afraid of the Topical Magnesium...I am learning that with my history of hormonal migraines that I really do need to keep up on the higher end magnesium dosage because I have just gone thru a pretty bad spell of a migraine these last two days. I used to take (external and internal total) around 800-900 mg a day so it appears I need to be closer to that amount than I thought.
I hope you feel better soon! I know talking about MC stuff isn't very fun, but it sure has helped a lot of us to feel more normal when we do ;-)
I've been a sensitive tummy person most my life too....
Cheers
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Chris,
Thanks for the link. I wasn't aware of that research.
Regarding cognitive decline: This is often related to methylation issues. Many of us find that taking a certain ratio of the active forms of vitamins B-6, B-9, and B-12 leads to significant benefits in the treatment of neurological issues. But in addition to that, it turns out that this particular combination helps to boost long-term cognition and reduce the risk of age-related dementia. I've been taking a prescription vitamin mix known as Metanx for almost 7 years now to help treat peripheral neuropathy caused by too many years of untreated gluten sensitivity that probably resulted in deficiencies of the active forms of these vitamins. It has helped my balance issues and various other neurological functions that had severely deteriorated before I started taking it. Metanx is widely prescribed to treat the peripheral neuropathy associated with diabetes, but I don't have diabetes. It also treats endothelial dysfunction.
It's crucial that the formulation contain the active forms of these vitamins, because many of us are unable to adequately convert the inactive forms found in conventional vitamins into the active forms used by our body due to methylation problems. Metanx is currently the only commercially-available product that contains the correct balance of the active forms of these 3 vitamins.
However, the formulation can be approximated by using certain vitamins that are available without prescription. It's much more tedious to use 3 products in place of 1, but this has the advantage of cutting the cost roughly in half. Metanx is expensive. And another problem is that it appears to contain trace amounts of casein and soy that can cause problems for many of us. Here is a way to formulate an equivalent vitamin mix:
Metanx contains:
35 mg of Pyridoxal 5'-phosphate (which is the active form of B-6)
3 mg of L-methylfolate Calcium (which is the active form of B-9)
2 mg of Methylcobalamin (which is the active form of B-12)
That can be obtained from:
Vital Nutrients brand of Pyridoxal-5 Phosphate, 50 mg. Inert ingredients are: rice powder, gelatin capsule, leucine, and silica.
To match the dose, take 1 capsule per day, 2 days in a row, then skip the 3rd day, then start over. IOW, this will amount to 2 capsules every 3 days, in order to average out at 33 mg per day.
Life Extension brand of Optimized Folate (L-methylfolate), 1,000 mcg. Inert ingredients are: mirocrystaline cellulose, vegetable cellulose (capsule), silica, vegetable stearate. The label specifically names all of the common allergens (including milk, eggs, soy, wheat, yeast, nuts, corn, rice, etc.), and the product is certified to be free of all of them.
To match the dose, take 3 capsules each day.
2,000 mcg of methylcobalamin. There are a number of options available for methylcomalamin. The one I used is Wonder Laboratories brand of Methyl Cobalamin, 5,000 mcg. Be aware that it contains mannitol, citric acid, and stevia.
To match the dose, take 1 tablet, then skip a day, take another tablet, then skip 2 days, then repeat. IOW this will amount to taking 2 tablets every 5 days, in order to average out at 2,000 mcg per day.
Tex
Thanks for the link. I wasn't aware of that research.
Regarding cognitive decline: This is often related to methylation issues. Many of us find that taking a certain ratio of the active forms of vitamins B-6, B-9, and B-12 leads to significant benefits in the treatment of neurological issues. But in addition to that, it turns out that this particular combination helps to boost long-term cognition and reduce the risk of age-related dementia. I've been taking a prescription vitamin mix known as Metanx for almost 7 years now to help treat peripheral neuropathy caused by too many years of untreated gluten sensitivity that probably resulted in deficiencies of the active forms of these vitamins. It has helped my balance issues and various other neurological functions that had severely deteriorated before I started taking it. Metanx is widely prescribed to treat the peripheral neuropathy associated with diabetes, but I don't have diabetes. It also treats endothelial dysfunction.
It's crucial that the formulation contain the active forms of these vitamins, because many of us are unable to adequately convert the inactive forms found in conventional vitamins into the active forms used by our body due to methylation problems. Metanx is currently the only commercially-available product that contains the correct balance of the active forms of these 3 vitamins.
However, the formulation can be approximated by using certain vitamins that are available without prescription. It's much more tedious to use 3 products in place of 1, but this has the advantage of cutting the cost roughly in half. Metanx is expensive. And another problem is that it appears to contain trace amounts of casein and soy that can cause problems for many of us. Here is a way to formulate an equivalent vitamin mix:
Metanx contains:
35 mg of Pyridoxal 5'-phosphate (which is the active form of B-6)
3 mg of L-methylfolate Calcium (which is the active form of B-9)
2 mg of Methylcobalamin (which is the active form of B-12)
That can be obtained from:
Vital Nutrients brand of Pyridoxal-5 Phosphate, 50 mg. Inert ingredients are: rice powder, gelatin capsule, leucine, and silica.
To match the dose, take 1 capsule per day, 2 days in a row, then skip the 3rd day, then start over. IOW, this will amount to 2 capsules every 3 days, in order to average out at 33 mg per day.
Life Extension brand of Optimized Folate (L-methylfolate), 1,000 mcg. Inert ingredients are: mirocrystaline cellulose, vegetable cellulose (capsule), silica, vegetable stearate. The label specifically names all of the common allergens (including milk, eggs, soy, wheat, yeast, nuts, corn, rice, etc.), and the product is certified to be free of all of them.
To match the dose, take 3 capsules each day.
2,000 mcg of methylcobalamin. There are a number of options available for methylcomalamin. The one I used is Wonder Laboratories brand of Methyl Cobalamin, 5,000 mcg. Be aware that it contains mannitol, citric acid, and stevia.
To match the dose, take 1 tablet, then skip a day, take another tablet, then skip 2 days, then repeat. IOW this will amount to taking 2 tablets every 5 days, in order to average out at 2,000 mcg per day.
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.
Wayne: Thanks for the info on Metanx (and how to approximate it). I'll give this a try. My biggest complaint since my surgery has been the cognitive decline. Folks don't realize how your hormones interact with your brain - whether it's your mood, your recall, or ability to solve complex problems. It's all changed for me (I'm an engineer, surrounded by brainiacs, and I just feel like I can't keep up anymore).
Marcia, Erica: thanks for the tip on topical magneisum. At one time, I was using topical magnesium, but I switched back to oral. I can't remember why (see previous discussion on cognitive decline).
Adelaide: It's hard to break the habitual thinking of "salads/raw veggies are good for me." I mean, they are for most people!
Over a year later, I'm still trying to grasp what this diagnosis means to me. I appreciate all of your comments and wisdom!
Chris
Marcia, Erica: thanks for the tip on topical magneisum. At one time, I was using topical magnesium, but I switched back to oral. I can't remember why (see previous discussion on cognitive decline).
Adelaide: It's hard to break the habitual thinking of "salads/raw veggies are good for me." I mean, they are for most people!
Over a year later, I'm still trying to grasp what this diagnosis means to me. I appreciate all of your comments and wisdom!
Chris
Chris, the Metanx equivalent really helped me when I got MC and menopause. I was on the doses Tex referenced above for about 6 months. My brain significantly improved after about 6 weeks on the Metanx equivalent. Now I take smaller amounts than the doses Tex referenced above. If I don't take the B vitamins for 4 days in a row on day four I can definitely tell I'm getting cognitive decline again. If you use the forum search function you can search Metanx for further threads and discussions.