Hi All,
I've had CC for as long as I can remember (my nickname as a toddler was the Kaopectate Kid) and I'm now 48. Was only diagnosed a couple years ago when it finally dawned on me that what I was experiencing was not normal and sought medical help!
I had been diagnosed as "allergic" to milk at age 11 (due to chronic ear infections) and so had already adjusted to a dairy free diet.
My WD has been controlled to maybe one per day with diet and Vit D3, but what is really impacting my life is all the joint pain.
I used to run daily but had to give that up about 4 years ago due to hip pain. Before my CC diagnosis, my previous PCP had me tested for RA and Lymes as I was tired of my shoulders, elbows, wrists and hands always being sore.
I have a hard time getting any kind of exercise due to my joint pain, and at 48, I'm too young to not be able to go for walks at least.
My current PCP who immediately sent me to get a colonoscopy when I finally asked about my odd bowel habits, has had a blood panel done up to get a base line of inflammation so we can proceed. I have my follow up appointment with him on Monday to go over those results.
What I'm asking here, is what have people done to help with joint pain?
BTW - I'm strictly lactose (edited to say dairy) and soy free, and primarily gluten free (don't see any effects of gluten except for lethargy) and have tried to eliminate all processed sugars.
Help with Joint Pain
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Giltgal,
Welcome to the forum. I would eliminate all dairy. Most of us have issues with the casein in dairy. Lactose free dairy still has casein. Switch to one of the alternative milks like almond milk.
Also consider eliminate any food with an ingredient list....i.e. eat unprocessed.
Also consider getting the enterolab testing done to determine what is causing inflammation.
I had pretty extreme joint pain when I was in a flare--I could not walk around the grocery store. (Prior to disease I walked 15 mi per week.)
Now I am pain free and doing better than all of my friends.
brandy
Welcome to the forum. I would eliminate all dairy. Most of us have issues with the casein in dairy. Lactose free dairy still has casein. Switch to one of the alternative milks like almond milk.
Also consider eliminate any food with an ingredient list....i.e. eat unprocessed.
Also consider getting the enterolab testing done to determine what is causing inflammation.
I had pretty extreme joint pain when I was in a flare--I could not walk around the grocery store. (Prior to disease I walked 15 mi per week.)
Now I am pain free and doing better than all of my friends.
brandy
Thanks Brandy,
I should have said I am completely dairy free, as I do know that it is the casein that is the issue for me.
Is the enterolab testing different than the blood panel my PCP would have done where he was specifically looking for base line inflammation markers? I get those results next week.
I don't really eat processed food anyway. My daily routine is something like -
Steel cut oats
Unsweetened cashew milk
Cinnamon
Wild blueberries
Banana
Pure Almond butter
Unsweetened Dutch cocoa powder
One date
Roasted veggies
Lots of water, as I'm quite thirsty. No coffee, occasionally peppermint tea, wine about once a month. My only downfall are sweets. I occasionally imbibe in cookies - a couple times a month.
I should have said I am completely dairy free, as I do know that it is the casein that is the issue for me.
Is the enterolab testing different than the blood panel my PCP would have done where he was specifically looking for base line inflammation markers? I get those results next week.
I don't really eat processed food anyway. My daily routine is something like -
Steel cut oats
Unsweetened cashew milk
Cinnamon
Wild blueberries
Banana
Pure Almond butter
Unsweetened Dutch cocoa powder
One date
Roasted veggies
Lots of water, as I'm quite thirsty. No coffee, occasionally peppermint tea, wine about once a month. My only downfall are sweets. I occasionally imbibe in cookies - a couple times a month.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
welcome!
based on what we have seen here, the joint pain is very likely from the small amount of ongoing gluten and the body needing magnesium
the oats can still be a trigger (with some gluten and other proteins that cause inflammation)
how much protein are you having each meal - animal protein is pretty key to wellness in MC world.
hope this helps
based on what we have seen here, the joint pain is very likely from the small amount of ongoing gluten and the body needing magnesium
the oats can still be a trigger (with some gluten and other proteins that cause inflammation)
how much protein are you having each meal - animal protein is pretty key to wellness in MC world.
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
Hi,
Welcome to the forum. Is "primarily gluten free" 100 % gluten free, including trace amounts? I had to use a cane just to get around 17 years ago. After cutting out gluten 100 %, I no longer have any arthritis symptoms, and I'm now 76. Also, taking glucosamine and flax seed oil will help joints.
Tex
Welcome to the forum. Is "primarily gluten free" 100 % gluten free, including trace amounts? I had to use a cane just to get around 17 years ago. After cutting out gluten 100 %, I no longer have any arthritis symptoms, and I'm now 76. Also, taking glucosamine and flax seed oil will help joints.
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 Gabe,
I do do frequent bath soaks with Ancient Minerals flakes, but am looking for a way to quantify and guarantee the amount of Magnesium I am getting with something oral. I don't think what I'm doing is adequate.
I have ordered ReMag, but it will be awhile before it arrives in Canada.
As for the animal protein, that is more difficult (isn't everything though?) I don't naturally enjoy meat all that much, unless I'm at a good restaurant and then I can't resist ordering lamb. What do folks do about ease of convenience when you need to consume meat?
I do do frequent bath soaks with Ancient Minerals flakes, but am looking for a way to quantify and guarantee the amount of Magnesium I am getting with something oral. I don't think what I'm doing is adequate.
I have ordered ReMag, but it will be awhile before it arrives in Canada.
As for the animal protein, that is more difficult (isn't everything though?) I don't naturally enjoy meat all that much, unless I'm at a good restaurant and then I can't resist ordering lamb. What do folks do about ease of convenience when you need to consume meat?
Hi Tex,
"Primarily gluten-free" is definitely not 100% gluten-free. I do on occasion enjoy avocado toast or vegan pizza (or the above mentioned cookie downfall). So I consume gluten at most a handful of times a month.
Wouldn't I have WD after consuming gluten like I do with dairy if gluten was an issue for me? The most I notice after consuming gluten is lethargy and some brain fog.
"Primarily gluten-free" is definitely not 100% gluten-free. I do on occasion enjoy avocado toast or vegan pizza (or the above mentioned cookie downfall). So I consume gluten at most a handful of times a month.
Wouldn't I have WD after consuming gluten like I do with dairy if gluten was an issue for me? The most I notice after consuming gluten is lethargy and some brain fog.
Hi there and welcome to the forum!
Like you, I don’t have WD after I consume gluten like I do with dairy (casein). But I also don’t get normal stools when I don’t cut out the gluten entirely in my diet. By saying gluten causes lethargy and brain fog you are confirming that you have a reaction to them and therefore continuing consuming them will hinder you in your path to recovery. I would advise you to go 100% gluten free for a couple of months and see how you feel. Good luck!
Henry
Like you, I don’t have WD after I consume gluten like I do with dairy (casein). But I also don’t get normal stools when I don’t cut out the gluten entirely in my diet. By saying gluten causes lethargy and brain fog you are confirming that you have a reaction to them and therefore continuing consuming them will hinder you in your path to recovery. I would advise you to go 100% gluten free for a couple of months and see how you feel. Good luck!
Henry
Common gluten symptoms: joint pain, brain fog, lethargy,
For ease of eating protein: Cook protein in big lots. Freeze in individual portions. Pull out daily and reheat.
Consider eliminate the oatmeal for 8 weeks to eliminate the joint pain: https://en.wikipedia.org/wiki/Oat_sensitivity
Even GF oats are controversial for celiacs to eat as the body "interprets" the oats to be gluten.
For ease of eating protein: Cook protein in big lots. Freeze in individual portions. Pull out daily and reheat.
Consider eliminate the oatmeal for 8 weeks to eliminate the joint pain: https://en.wikipedia.org/wiki/Oat_sensitivity
Even GF oats are controversial for celiacs to eat as the body "interprets" the oats to be gluten.
In the early days of this forum we had a member who had the motto: "Never leave home without a porkchop in your purse."GiltGal wrote:What do folks do about ease of convenience when you need to consume meat?
And she meant it.
Henry is right on target with his post. I agree that those symptoms are indisputable reactions to gluten. You may or may not have digestive symptoms along with them. Some MC patients only have the neurological symptoms. But the point is, exposure to gluten that often means that your diet is not going to ever be able to stop the the inflammation, and you will never be able to achieve stable remission. Gluten-free means 100 %, because that's the only way the diet will work for virtually all of us.GiltGal wrote:Wouldn't I have WD after consuming gluten like I do with dairy if gluten was an issue for me? The most I notice after consuming gluten is lethargy and some brain fog.
If you really want to kick those symptoms to the curb once and for all, and get your life back, you have to be dedicated about this, and respect your long-term health enough to be strict with your diet. This may not seem so important to you now, but as you get older, if you still have the chronic inflammation, you are going to be vulnerable to the development of various autoimmune diseases that you could easily avoid by cleaning up your diet now, and keeping it clean. Trust me, it's so worth it.
And Brandy is right on target about the oats. The vast majority of us react to oats. The avenin in oats is just a weaker allergen than wheat gluten, so it sometimes takes longer to react.
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 all for your responses.
I had never considered that gluten was the cause of my joint pain. I'm interested to see what my blood test results show on Monday as a baseline for inflammation. I'll take all this info with me to my incredible PCP who was the one who immediately got to the bottom of my symptoms and had me diagnosed with CC.
What will I do without my oatmeal?!
I had never considered that gluten was the cause of my joint pain. I'm interested to see what my blood test results show on Monday as a baseline for inflammation. I'll take all this info with me to my incredible PCP who was the one who immediately got to the bottom of my symptoms and had me diagnosed with CC.
What will I do without my oatmeal?!
