I am new to this site and forum and very happy to have found it. I am quite overwhelmed to say the least.
I am awaiting the arrival of Tex's book (Amazon says tomorrow).
My story is that I have Hashimoto's, Sjogren's, Osteoporosis and MLC. I was diagnosed with MLC about 2 years ago by my internist at the Mayo in AZ when I started having diarrhea for the first time in my life. Other than giving me the diagnosis, there was no other help except to say stay away from fat and dairy. My doctor said it might well resolve itself, which it did sort of after eating nothing but rice, bananas, applesauce, almond milk and a little turkey. After doing that I was able to return to my normal way of eating but was constipated always. My doctor seemed to think that all was fine as long as I wasn't having diarrhea.
Well the diarrhea has now returned and it is worse than the first time.
I know I can't take steroids because of my Osteoporosis and want to do this with diet but I am confused by the differences I am reading about here and what the Mayo says.
They told my to stay away from Magnesium and Coconut Oil (well really any kind of oil) and yet it seems that everyone on this site is using both.
Also, my Vitamin D levels have been consistently at 65 for at least 4 years. Also, I believe anti-histamines dry you out so that is another impossibility with my Sjogren's. Making matters worse is that everything that is supposed to help with dryness contains Xylitol which I believe makes loose bowels so I don't touch any of the gum, mouth washes, etc. I just suffer with the dryness.
Can anyone shed any light on my situation? Any and all help would be greatly appreciated. You all seem like such a kind and generous group. Thank you in advance for any advice.
Debbie
Multiple Autoimmune Diseases
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Debbie
welcome to our group (our family) and sympathies for your situation and that you had to find us.
there many here that have multiple auto immune issues ( I am one of them)
that is good that your Vit D levels have been that level - sort of sad that Mayo told to avoid coconut oil and magnesium. given the constipation and hashimoto's and sjorgrens it is a strong indicator that you need magnesium.
many here use topical magnesium (lotion, oil, epsom salt foot soaks) and orally doctors best magnesium glycinate is a great starting point for MC safe magnesium.
the other option that will help all your issues is following low inflammation eating / lifestyle plan - more protein and safe wellcooked veges. Please check out the information in the guidelines to recovery section
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
rather than anti-histamines - magnesium and active B6 (P5P) will help histamine inflammation
(thorne P5P from iHerb is MC safe) and not dry you out.
I would encourage you to start with magnesium, low inflammation eating plan and P5P
and a couple of months later a good option for the Sjogren's is N-acetylcysteine (NAC)
I hope this helps
welcome to our group (our family) and sympathies for your situation and that you had to find us.
there many here that have multiple auto immune issues ( I am one of them)
that is good that your Vit D levels have been that level - sort of sad that Mayo told to avoid coconut oil and magnesium. given the constipation and hashimoto's and sjorgrens it is a strong indicator that you need magnesium.
many here use topical magnesium (lotion, oil, epsom salt foot soaks) and orally doctors best magnesium glycinate is a great starting point for MC safe magnesium.
the other option that will help all your issues is following low inflammation eating / lifestyle plan - more protein and safe wellcooked veges. Please check out the information in the guidelines to recovery section
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
rather than anti-histamines - magnesium and active B6 (P5P) will help histamine inflammation
(thorne P5P from iHerb is MC safe) and not dry you out.
I would encourage you to start with magnesium, low inflammation eating plan and P5P
and a couple of months later a good option for the Sjogren's is N-acetylcysteine (NAC)
I 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 Debbie,
Welcome to our Internet family. Your original diet for treating LC was on target. The problem is we can never go back to eating inflammatory foods such as gluten, dairy, and for many of us, soy and/or eggs because our immune system produces antibodies to those foods. Those antibodies cause our guts to stay inflamed if we continue to eat those foods.
Lack of magnesium is the reason why you have osteoporosis. Without adequate magnesium, you can ingest all the calcium in the world and have a great vitamin D blood level and still have osteoporosis because magnesium is essential for your body to move the calcium from your bloodstream to your bones (or anywhere else in your body). Taking calcium without taking magnesium can cause a heart attack because your blood level of calcium can get too high.
So far, every member here who has gone to the Mayo has not received any help with their MC. I have to conclude that they don't know to treat the disease.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Your original diet for treating LC was on target. The problem is we can never go back to eating inflammatory foods such as gluten, dairy, and for many of us, soy and/or eggs because our immune system produces antibodies to those foods. Those antibodies cause our guts to stay inflamed if we continue to eat those foods.
Lack of magnesium is the reason why you have osteoporosis. Without adequate magnesium, you can ingest all the calcium in the world and have a great vitamin D blood level and still have osteoporosis because magnesium is essential for your body to move the calcium from your bloodstream to your bones (or anywhere else in your body). Taking calcium without taking magnesium can cause a heart attack because your blood level of calcium can get too high.
So far, every member here who has gone to the Mayo has not received any help with their MC. I have to conclude that they don't know to treat the disease.
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 and a couple more questions
Thank you all for the warm welcome and especially to Gabes and Tex for all the additional information. I did forget to say that I have been Gluten free and pretty much dairy free for a couple of years now so something else is driving this I guess. I will be ordering the test later today. Would the A1,C1 panel be the best?
I am wondering about a couple of other things. Has anyone ever tried Heather's Tummy Fiber Acacia Senegal? Does it help at all with MLC and has anyone had any success using it?
Also wondering about the Coconut Oil? Do you have to wait until the WD is under control to start it? or should you start using it during a flare? I am so afraid of introducing any fats but I know I need some. I do take a 1 teaspoon of Omega 3 Fish Oil which is highly recommended for the Sjogren's. Any thoughts on that?
And finally (at least for now) could someone please tell me the best topical Magnesium to use. I am thinking that is the way to go at least during a flare. After reading Tex's reply, I think I really better get started on the Mag.
Thanks for everyone's help.
Debbie
I am wondering about a couple of other things. Has anyone ever tried Heather's Tummy Fiber Acacia Senegal? Does it help at all with MLC and has anyone had any success using it?
Also wondering about the Coconut Oil? Do you have to wait until the WD is under control to start it? or should you start using it during a flare? I am so afraid of introducing any fats but I know I need some. I do take a 1 teaspoon of Omega 3 Fish Oil which is highly recommended for the Sjogren's. Any thoughts on that?
And finally (at least for now) could someone please tell me the best topical Magnesium to use. I am thinking that is the way to go at least during a flare. After reading Tex's reply, I think I really better get started on the Mag.
Thanks for everyone's help.
Debbie
Hi Debbie,
Yes, the A1 plus C1 Panels are the best way to pinpoint any unknown food sensitivities, and they will verify that your diet isn't being cross-contaminated by gluten. They will also tell you how big a problem you have with casein.
I've never tried Heather's Tummy Fiber Acacia Senegal. Fiber is contraindicated with MC and usually the fewer commercial products we use, the faster we recover. Most commercial products also contain some ingredient or other that causes us to react, and even when they don't, they don't speed up the healing.
Coconut oil is fine. You have to use a lot before it is likely to cause diarrhea. Fish oil is fine, but it can be overdone in some situations. If you use too much it will likely cause looser stools, but not WD.
A lot of members use Ancient Minerals magnesium oil or plain Epsom Salts. There's a special post about magnesium in the Sticky's section at the top of this forum.
Tex
Yes, the A1 plus C1 Panels are the best way to pinpoint any unknown food sensitivities, and they will verify that your diet isn't being cross-contaminated by gluten. They will also tell you how big a problem you have with casein.
I've never tried Heather's Tummy Fiber Acacia Senegal. Fiber is contraindicated with MC and usually the fewer commercial products we use, the faster we recover. Most commercial products also contain some ingredient or other that causes us to react, and even when they don't, they don't speed up the healing.
Coconut oil is fine. You have to use a lot before it is likely to cause diarrhea. Fish oil is fine, but it can be overdone in some situations. If you use too much it will likely cause looser stools, but not WD.
A lot of members use Ancient Minerals magnesium oil or plain Epsom Salts. There's a special post about magnesium in the Sticky's section at the top of this forum.
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 Debbie, I'm Debbie too :-). I was diagnosed a few months ago, so would certainly not call myself and expert on anything, but I've been drinking the coolaid (figuratively of course) of the internet gurus these days who are using the "food as medicine" approach to healing autoimmune diseases and much of the advice tends to run contrary to what the established medical community has to say, so it seems that we all really need to test things out on ourselves to see what works and what doesn't. I've been eating quite a lot of fat this whole time, and my understanding is that it is really essential for healing, unless you aren't tolerating it, so my vote would be to give fat a try.
Personally, I am very sad that I seem to have developed an allergy to coconut, so I've had to find my fat other places.
Another topic to possibly look into if you haven't already is "leaky gut". There are some theories out there that say it is actually the cause of autoimmune conditions....and the the "autoimmune paleo" diet might also be of interest...or, maybe you already know about all of that :-).
Personally, I am very sad that I seem to have developed an allergy to coconut, so I've had to find my fat other places.
Another topic to possibly look into if you haven't already is "leaky gut". There are some theories out there that say it is actually the cause of autoimmune conditions....and the the "autoimmune paleo" diet might also be of interest...or, maybe you already know about all of that :-).