Valerie,
When I tried to discuss my autoimmune antibodies with my GI, thinking they might be related to my LC, she flatly told me there was no relationship and said i needed to see a rheumatologist about them. She was singularly focused on the GI tract and her outdated knowledge of MC. She even refused to test me for celiac disease, despite my classic symptoms. I certainly hope your visit goes better than mine!! That was the last GI I saw, besides Dr. Fasano, a celiac expert, who didn't care to talk about the MC, only celiac!! I'm currently hunting for a more 'holistic" doctor, and letting my internist do basic follow-up.
Let us know how it goes. Wishing you an enlightened/progressive GI...
How many here experience joint and muscle pain w/MC?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I agree - I can't even find a neurologist at the local hospitals/clinics who will admit that gluten-sensitivity can cause neurological issues, let alone a GI specialist who will acknowledge a gluten connection to anything other than celiac disease. 
Most of us find that after we get our MC symptoms under control, the fatigue, aches and pain, and even the brain fog, tend to slowly fade away. The way we feel has everything to do with what we eat, despite conventional medical "wisdom" to the contrary.
Tex
Most of us find that after we get our MC symptoms under control, the fatigue, aches and pain, and even the brain fog, tend to slowly fade away. The way we feel has everything to do with what we eat, despite conventional medical "wisdom" to the contrary.
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.
These doctors must be fueling the gluten-free backlash - the most mainstream media has been carrying stories about people who walked around with horrible 'unrelated' symptoms, were finally correctly diagnosed with celiac disease, and presto - the 'mystery' symptoms also resolved. I think Gluten Free Girl has been in the NYTimes (that's my local paper, so I may exaggerate its importance in the universe of knowing things).
I don't expect doctors to read scholarly papers related to their area of expertise, of course, though they've been connecting the neurological dots for a decade. They're far too busy; and anyway, they have patients reading that stuff on the Internet, so they can poo-poo it vicariously.
I wonder how many struggling gluten-sensitive people go home with their doctor's assurance that gluten has nothing to do with it, to face family members who 'told them so' - and an uphill battle to get or keep gluten out of their lives.
I don't like needful suffering much, but the needless kind really gets me overheated.
Love,
Sara
I don't expect doctors to read scholarly papers related to their area of expertise, of course, though they've been connecting the neurological dots for a decade. They're far too busy; and anyway, they have patients reading that stuff on the Internet, so they can poo-poo it vicariously.
I wonder how many struggling gluten-sensitive people go home with their doctor's assurance that gluten has nothing to do with it, to face family members who 'told them so' - and an uphill battle to get or keep gluten out of their lives.
I don't like needful suffering much, but the needless kind really gets me overheated.
Love,
Sara
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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
Fatigue and Muscle Pain
I have also recently been diagnosed with C.C. I am more tired than usual and I guess that is attributable to recovery from the severe diarrhea I had and trying to find a diet that works.
My mother also had C.C. and she did have severe muscle pain and fatigue. She was diagnosed with the auto immune condition polymyalgia rheumatica. It can easily be diagnosed with a blood test, specifically the SED rate. It is treated with prednisone and that will eliminate all the symptoms. You then gradually wean off the pred and hope it doesn't come back. My Mom had a few relapses and all were successfully treated with the pred. This condition is frequently overlooked by doctors. BTW, she lived feeling quite well most of the time to be 92 with both CC and PMR.
Sheila Williams
My mother also had C.C. and she did have severe muscle pain and fatigue. She was diagnosed with the auto immune condition polymyalgia rheumatica. It can easily be diagnosed with a blood test, specifically the SED rate. It is treated with prednisone and that will eliminate all the symptoms. You then gradually wean off the pred and hope it doesn't come back. My Mom had a few relapses and all were successfully treated with the pred. This condition is frequently overlooked by doctors. BTW, she lived feeling quite well most of the time to be 92 with both CC and PMR.
Sheila Williams
I hate to admit it, but I bought the G-free Diet book by Elizabeth Hasselbeck at a Borders going-out-of-business sale. I didn't figure it would be very enlightening, but it is interesting. I found the Foreward by Dr. Peter Greene most interesting. He explained that the US is dead-last in recognizing celiac disease (compared to other countries with equally high prevalence). He was trained in Australia. He said this stems from the pharma industry, which has no interest in a disease treatable with diet. No meds, no reason to train students about the disease. So the average delay in diagnosis is 9-10 years here compared to 1-2 years elsewhere.
Here is her story - Chapter 1. She self-diagnosed and never got confirmation that is was celiac. Like me, it started with a GI infection in Central America...
http://www.gfreediet.com/gfree_diet_chapter1.pdf
Incidentally, my MIL finally started a GF diet last week. I'm so proud of her!! Her celiac bloodwork was negative, but she has Hashimoto's thyroiditis, IBS-D, constant bloating, fatigue, brain fog, short-term memory problems, and neuropathy in her toes. She said the bloating resolved within days, her 4 morning trips to the bathroom went away (depite eating tons of vegetables and salads, she didn't go for 2 days!), and her energy level rose dramatically. She also feels she is losing weight (another goal). I think she's a true believer! I have lots to help her with re: go-to foods and snacks. Luckily she can still eat lactose-free dairy and soy. I so hope this makes her life more enjoyable, and I hope she caught it before things got worse on a number of fronts.
Here is her story - Chapter 1. She self-diagnosed and never got confirmation that is was celiac. Like me, it started with a GI infection in Central America...
http://www.gfreediet.com/gfree_diet_chapter1.pdf
Incidentally, my MIL finally started a GF diet last week. I'm so proud of her!! Her celiac bloodwork was negative, but she has Hashimoto's thyroiditis, IBS-D, constant bloating, fatigue, brain fog, short-term memory problems, and neuropathy in her toes. She said the bloating resolved within days, her 4 morning trips to the bathroom went away (depite eating tons of vegetables and salads, she didn't go for 2 days!), and her energy level rose dramatically. She also feels she is losing weight (another goal). I think she's a true believer! I have lots to help her with re: go-to foods and snacks. Luckily she can still eat lactose-free dairy and soy. I so hope this makes her life more enjoyable, and I hope she caught it before things got worse on a number of fronts.
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MBombardier
- Rockhopper Penguin
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- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Z, that's great news about your MIL. She's lucky to have you as a resource. (We all are!)
Sheila,
Welcome - I bet you will feel your energy return as you heal. I note your food intolerances list lactose, so wanted to mention that for most of us, it's the casein (protein) rather than the lactose (sugar) in dairy that sets off an antigenic reaction. The worst culprit for the vast majority here, as I bet you've already discovered by browsing, is gluten, the protein in wheat and several other grains.
Interesting that your mother also had CC (as well as PMR, which sure sounds like it could be in the autoimmune family). And heartening for you and all the rest of us that she lived well to 92.
I'm sure you'll find help and answers, and wish you speedy healing,
Sara
Sheila,
Welcome - I bet you will feel your energy return as you heal. I note your food intolerances list lactose, so wanted to mention that for most of us, it's the casein (protein) rather than the lactose (sugar) in dairy that sets off an antigenic reaction. The worst culprit for the vast majority here, as I bet you've already discovered by browsing, is gluten, the protein in wheat and several other grains.
Interesting that your mother also had CC (as well as PMR, which sure sounds like it could be in the autoimmune family). And heartening for you and all the rest of us that she lived well to 92.
I'm sure you'll find help and answers, and wish you speedy healing,
Sara
JoAnn,
I meant to add that I ordered magnesium flakes (mag. chloride, used for making tofu), and plan to use them to make a transdermal liquid for topical use. (Also supposed to be useful as a bath soak or foot soak.) I'll let you know if they help. I skimmed the 'Magnesium Miracle' book (Dr. Carolyn Dean), so you probably shouldn't take my not-so-expert advice! Kari is using topical mag, too.
I've been having on-and-off cramps in one calf muscle (normally my most reliable body part). It seems to be improving with a wildly overpriced liquid I bought at a health food store. I have also taken a very few drops occasionally in liquid, probably not enough to add much magnesium. But I don't want to risk the laxative effect.
--Sara
I meant to add that I ordered magnesium flakes (mag. chloride, used for making tofu), and plan to use them to make a transdermal liquid for topical use. (Also supposed to be useful as a bath soak or foot soak.) I'll let you know if they help. I skimmed the 'Magnesium Miracle' book (Dr. Carolyn Dean), so you probably shouldn't take my not-so-expert advice! Kari is using topical mag, too.
I've been having on-and-off cramps in one calf muscle (normally my most reliable body part). It seems to be improving with a wildly overpriced liquid I bought at a health food store. I have also taken a very few drops occasionally in liquid, probably not enough to add much magnesium. But I don't want to risk the laxative effect.
--Sara
