Multiple Autoimmune Issues - My First Post :-)
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Multiple Autoimmune Issues - My First Post :-)
I found this wonderful discussion board/community a week ago and it has given me the courage to add gluten-free to my current lactose-free diet. I've got a friend who has been following a Paleo diet for over three years who is helping me out with cookbooks and advice.
My question is are there others with multiple autoimmune issues that have found gluten-free and or Paleo diets to help with the other issues? I also have fibromyalgia, peripheral neuropathy and endometriosis.
My stomach is passably livable right now - I've been on budesonide for a couple weeks and have avoided lactose for about a month - it took me several weeks to figure out that milk was my top insensitivity as I grew up on milk and never could have fathomed having an issue with it. I'm tending more towards C than D right now. I have an appointment with my GI this afternoon and will ask about tapering down as she currently has me on 9mg and I've read on here that if you're having C you might need to play with the dose.
My husband is having a hard time accepting some of my eating challenges. He doesn't understand how gluten could be hurting me.
Thank you for all of this great info on this site.
My question is are there others with multiple autoimmune issues that have found gluten-free and or Paleo diets to help with the other issues? I also have fibromyalgia, peripheral neuropathy and endometriosis.
My stomach is passably livable right now - I've been on budesonide for a couple weeks and have avoided lactose for about a month - it took me several weeks to figure out that milk was my top insensitivity as I grew up on milk and never could have fathomed having an issue with it. I'm tending more towards C than D right now. I have an appointment with my GI this afternoon and will ask about tapering down as she currently has me on 9mg and I've read on here that if you're having C you might need to play with the dose.
My husband is having a hard time accepting some of my eating challenges. He doesn't understand how gluten could be hurting me.
Thank you for all of this great info on this site.
Michelle
“Life is like taking pictures with a camera… FOCUS on what’s important, CAPTURE the good times, DEVELOP from the negatives, and if things don’t work out, TAKE ANOTHER SHOT.” Unknown
“Life is like taking pictures with a camera… FOCUS on what’s important, CAPTURE the good times, DEVELOP from the negatives, and if things don’t work out, TAKE ANOTHER SHOT.” Unknown
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome Michelle
I am glad that you have found useful information and seen improvements..
most definately gluten free (and dairy free) does most definitely help autoimmune issues, as these two ingredients are highly inflammatory to the body.
have you looked at the guidelines to recovery section?? in the eating plan section we have some articles that explain why gluten is an issue, not just for MC'ers or those with autoimmune issues, but for the general population..
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22328
(the links to the articles are at the bottom of the first post)
one of the links talks about scientific study regarding gluten and inflammation and Neuropathy
a 30 minute program that may also help your husband see why GLuten can cause issues
http://www.abc.net.au/catalyst/stories/4358631.htm
this documentary is also very informative.. the website has good articles etc
https://whatswithwheat.com/
you may have seen Vit D3 and magnesium frequently discussed/recommended. Via resolving magnesium deficiencies i got chronic fibromyalgia resolved into a minimal issue..
I am glad that you have found useful information and seen improvements..
most definately gluten free (and dairy free) does most definitely help autoimmune issues, as these two ingredients are highly inflammatory to the body.
have you looked at the guidelines to recovery section?? in the eating plan section we have some articles that explain why gluten is an issue, not just for MC'ers or those with autoimmune issues, but for the general population..
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22328
(the links to the articles are at the bottom of the first post)
one of the links talks about scientific study regarding gluten and inflammation and Neuropathy
a 30 minute program that may also help your husband see why GLuten can cause issues
http://www.abc.net.au/catalyst/stories/4358631.htm
this documentary is also very informative.. the website has good articles etc
https://whatswithwheat.com/
you may have seen Vit D3 and magnesium frequently discussed/recommended. Via resolving magnesium deficiencies i got chronic fibromyalgia resolved into a minimal issue..
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hello Michelle,
Welcome to our Internet family. It sounds as though you are off to a good start. It's not unusual that your husband does not understand your food sensitivity issues. No one truly understands this disease unless they actually have it. And that also applies to about 99.9 % of GI specialists, unfortunately.
Yes, many members here have found that as their digestive system heals in response to diet changes (totally avoiding inflammatory foods), many of their other autoimmune-type issues become less noticeable or disappear altogether. All AI diseases are caused by inflammation, and in most cases, the inflammation originates in the gut.
About 15 years ago I had arthritis so bad that on my worst days I had to use a cane just to get around. After I changed my diet and my gut healed, the arthritis faded away with all my other symptoms. If I accidentally slip up on my diet, the symptoms begin to return, but that rarely happens these days because I have learned not to take chances with my diet.
In addition to what Gabes has posted, I would point out that she's quite correct about magnesium and fibromyalgia. Magnesium deficiency is often misdiagnosed as fibromyalgia. There's no money in treating magnesium deficiency, so doctors are not trained to even recognize the symptoms of magnesium deficiency. As a result, very few in the medical or pharmaceutical world are concerned about it.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. It sounds as though you are off to a good start. It's not unusual that your husband does not understand your food sensitivity issues. No one truly understands this disease unless they actually have it. And that also applies to about 99.9 % of GI specialists, unfortunately.
Yes, many members here have found that as their digestive system heals in response to diet changes (totally avoiding inflammatory foods), many of their other autoimmune-type issues become less noticeable or disappear altogether. All AI diseases are caused by inflammation, and in most cases, the inflammation originates in the gut.
About 15 years ago I had arthritis so bad that on my worst days I had to use a cane just to get around. After I changed my diet and my gut healed, the arthritis faded away with all my other symptoms. If I accidentally slip up on my diet, the symptoms begin to return, but that rarely happens these days because I have learned not to take chances with my diet.
In addition to what Gabes has posted, I would point out that she's quite correct about magnesium and fibromyalgia. Magnesium deficiency is often misdiagnosed as fibromyalgia. There's no money in treating magnesium deficiency, so doctors are not trained to even recognize the symptoms of magnesium deficiency. As a result, very few in the medical or pharmaceutical world are concerned about it.
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.
- humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Welcome Michelle,
You've come to the right place to find a wealth of information that will help you in your journey.
Thank you Gabes for posting those links. Even though I am not new to this, I still research/read to not only help me better understand, but to help me know how to explain it to family members and friends who ask questions especially when it comes to the part of having to be very strict in removing those foods I've become sensitive/intolerant to. Those links you provided are very helpful. Thank you!
And, as always, Tex, I learn something new from every post you make here.
Paula
You've come to the right place to find a wealth of information that will help you in your journey.
Thank you Gabes for posting those links. Even though I am not new to this, I still research/read to not only help me better understand, but to help me know how to explain it to family members and friends who ask questions especially when it comes to the part of having to be very strict in removing those foods I've become sensitive/intolerant to. Those links you provided are very helpful. Thank you!
And, as always, Tex, I learn something new from every post you make here.
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
Hi Michelle,
Sorry to hear of the multiple issues. I'm in the same boat. I have found LDN to be very helpful and has been a life saver for my pain issues. Tex and Gabes advise about the magnesium is also very helpful. It's a good place to start and works wonders for leg cramps. I have arthritis in my fingers and after reading about Tex's experience I started being more observant about flares and foods in my diet. I find it does make a difference. There is so much great information here that can give you a starting point to figure out what works for you.
Sorry to hear of the multiple issues. I'm in the same boat. I have found LDN to be very helpful and has been a life saver for my pain issues. Tex and Gabes advise about the magnesium is also very helpful. It's a good place to start and works wonders for leg cramps. I have arthritis in my fingers and after reading about Tex's experience I started being more observant about flares and foods in my diet. I find it does make a difference. There is so much great information here that can give you a starting point to figure out what works for you.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Thanks all for the replies and information! I have quadrupled my magnesium intake, as I found after checking the bottle that I was only taking 1/2 of a 250mg dose each day, so now I'm up to 500mg, spaced at 250 in the morning and the evening. And I still need to do more research - it sounds like the high amount of calcium I have been on (1200mg) since my hysterectomy in 2005 to combat bone loss has gobbled up all of my body's available magnesium. This could be the culprit for all of my AI issues. So I'm not sure if I should cut back on the calcium and/or increase the magnesium even more - any suggestions?
Thanks Gabes for the video links! I will be sharing those with my husband.
My current main issue is constipation. My GI agreed for me to decrease my budesonide to 6mg/day vs 9mg. In the past I was taking Metamucil to combat constipation, but I'm hearing on this discussion board that fiber is not good for MC. What can I do to decrease my C?
Thanks much!
Thanks Gabes for the video links! I will be sharing those with my husband.
My current main issue is constipation. My GI agreed for me to decrease my budesonide to 6mg/day vs 9mg. In the past I was taking Metamucil to combat constipation, but I'm hearing on this discussion board that fiber is not good for MC. What can I do to decrease my C?
Thanks much!
Michelle
“Life is like taking pictures with a camera… FOCUS on what’s important, CAPTURE the good times, DEVELOP from the negatives, and if things don’t work out, TAKE ANOTHER SHOT.” Unknown
“Life is like taking pictures with a camera… FOCUS on what’s important, CAPTURE the good times, DEVELOP from the negatives, and if things don’t work out, TAKE ANOTHER SHOT.” Unknown
Michelle,
Budesonide will not treat constipation-predominant MC. It can only make the constipation worse. Brandy is right on target with her suggestion to reduce the budesonide an additional step if the constipation continues. If necessary, soluble fiber (such as Metamucil) can be added to the diet. It's not as irritating to the intestines as insoluble fiber.
You have been taking a very high daily dose of calcium. Ideally, when calcium is supplemented, an equal amount of magnesium should also be taken. But there is no way that you are likely to be able to absorb 1200 mg of magnesium. That means that much of it would be left unabsorbed in the intestines where it would be likely to cause diarrhea. That implies that you are taking way more calcium than your body can utilize.
Yes, it's quite possible that your high calcium supplementation may be contributing to the development of autoimmune disease (although I seriously doubt that the doctor who advised you to do that would agree). Most people have more than enough calcium in their diet (without taking a calcium supplement) provided that they have plenty of magnesium and vitamin D in their system. The problem is that almost everyone in most developed countries is magnesium and vitamin D deficient. The residents of developed countries have the highest rates of calcium intake and the highest rates of osteoporosis. Obviously that approach doesn't work. The proper approach is to take magnesium and vitamin D, not calcium.
Calcium also depletes vitamin D, and vitamin D is the fuel that operates our immune system. When our vitamin D level becomes deficient, that opens the door to the development of autoimmune disease. This is so important that I wrote a book (Available on Amazon in printed or digital form and at most major booksellers in digital form) titled Vitamin D and Autoimmune Disease. The book is not very expensive, but I'll be happy to send you a printed or digital copy free of charge if you wish, because I believe that you would find it to be very helpful in understanding the importance of vitamin D in protecting against autoimmune disease.
I have peripheral neuropathy. I find the prescription-only product known as Metanx to be very helpful for treating peripheral neuropathy. Metanx is a specific combination of the active forms of vitamins B-6, B-9, and B-12. The active forms are necessary because many of us have methylation issues that prevent our bodies from being able to effectively utilize the inactive forms of these vitamins. Most OTC vitamins are in the inactive form. For example, many of us show high B-12 levels on blood tests, and yet our body is starving for B-12 because it cannot convert the inactive form of B-12 into the active form that our neurological system needs.
Metanx can also be approximated by using the active forms of these 3 vitamins that are available without a prescription. Many members here have resolved various neurological symptoms by taking these vitamins.
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. 2,000 mcg is the same as 2 mg.
By doing this, you can not only avoid any undesirable inert ingredients in Metanx, but you can also save roughly half the cost of the branded product. And all of these products are available without a prescription. If I recall correctly, Brandy has also used a similar "home-compounded" version of Metanx, with good success.
You're very welcome.
Tex
Budesonide will not treat constipation-predominant MC. It can only make the constipation worse. Brandy is right on target with her suggestion to reduce the budesonide an additional step if the constipation continues. If necessary, soluble fiber (such as Metamucil) can be added to the diet. It's not as irritating to the intestines as insoluble fiber.
You have been taking a very high daily dose of calcium. Ideally, when calcium is supplemented, an equal amount of magnesium should also be taken. But there is no way that you are likely to be able to absorb 1200 mg of magnesium. That means that much of it would be left unabsorbed in the intestines where it would be likely to cause diarrhea. That implies that you are taking way more calcium than your body can utilize.
Yes, it's quite possible that your high calcium supplementation may be contributing to the development of autoimmune disease (although I seriously doubt that the doctor who advised you to do that would agree). Most people have more than enough calcium in their diet (without taking a calcium supplement) provided that they have plenty of magnesium and vitamin D in their system. The problem is that almost everyone in most developed countries is magnesium and vitamin D deficient. The residents of developed countries have the highest rates of calcium intake and the highest rates of osteoporosis. Obviously that approach doesn't work. The proper approach is to take magnesium and vitamin D, not calcium.
Calcium also depletes vitamin D, and vitamin D is the fuel that operates our immune system. When our vitamin D level becomes deficient, that opens the door to the development of autoimmune disease. This is so important that I wrote a book (Available on Amazon in printed or digital form and at most major booksellers in digital form) titled Vitamin D and Autoimmune Disease. The book is not very expensive, but I'll be happy to send you a printed or digital copy free of charge if you wish, because I believe that you would find it to be very helpful in understanding the importance of vitamin D in protecting against autoimmune disease.
I have peripheral neuropathy. I find the prescription-only product known as Metanx to be very helpful for treating peripheral neuropathy. Metanx is a specific combination of the active forms of vitamins B-6, B-9, and B-12. The active forms are necessary because many of us have methylation issues that prevent our bodies from being able to effectively utilize the inactive forms of these vitamins. Most OTC vitamins are in the inactive form. For example, many of us show high B-12 levels on blood tests, and yet our body is starving for B-12 because it cannot convert the inactive form of B-12 into the active form that our neurological system needs.
Metanx can also be approximated by using the active forms of these 3 vitamins that are available without a prescription. Many members here have resolved various neurological symptoms by taking these vitamins.
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. 2,000 mcg is the same as 2 mg.
By doing this, you can not only avoid any undesirable inert ingredients in Metanx, but you can also save roughly half the cost of the branded product. And all of these products are available without a prescription. If I recall correctly, Brandy has also used a similar "home-compounded" version of Metanx, with good success.
You're very welcome.
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.