Does Endocort cause pain in your feet and legs?

[Tanya Lynn]

Hey Polly,

You are so sweet to always answer so promptly.

I started taking some calcium(1,000 mg Oyster Shell), magnesium(500mg)
and Vitamin D (400iu). Its a combination pill with the three. Do you take
calcium? If so, what brand to you take?

I do drink OJ that's fortified with calcium and Dark Chocolate Almond Milk
that has it as well. I have been off Dairy since July 19th along with the gluten,
then a month later I quit the soy. But I have been eating corn products.
Gosh, I guess that I will have to give that up too....

My diet consists of Rice Chex with Rice milk with banana for breakfast,
turkey with avocado at lunch and for dinner it varies from rice or potato
with boiled/grilled shrimp, fish, chicken or pork. I haven't eaten any fresh
veggies or fruits all summer..... Oh, sometimes for lunch I eat Quinoa with
with leftover meat added. That's about it, very boring!!

I haven't eaten beef in about 6 years, don't care for it.

I counted up the weeks of diarrhea as of today it's been 16 weeks since
this flare up. I have been on the Endocort for 10 weeks and still having
anywhere from 6-10 a day.

It's just so very frustrating, I hate feeling this way. But, I keep trying
to tell myself, there are so many people out there that are suffering alot
worse than myself.

BTW, how are you feeling? I hope things are a little better for you now.
I know how hard it is to loose something as close as your Rusty.

Thanks Polly for all you do here!

Tanya

[tex]

Tanya,

Pardon me for butting in again, but do you also happen to take a multivitamin? The reason I ask is because many of them contain magnesium, and magnesium is also a laxative, especially in relatively large amounts such as 500 mg or more. If the D should get worse, you may want to reconsider your magnesium intake.

Also, I couldn't drink orange juice when I was recovering, because the citric acid gave me D.

I hope you're taking more vitamin D than that, altogether. I take 2500 IU daily, in the summer and early fall, and 4500 IU, the rest of the year.

Tex

[Polly]

Hi Tanya,

I don't usually take calcium supplements when I have normal BMs. But I do have some calcium carbonate powder from Freeda vitamins (online) that I can mix with some applesauce or nut butter if I am having a minor flare. It has 800 mg. per teaspoon. Freeda has really pure vitamins - none of our food intolerances for the most part.

Tex has a point there about the magnesium. Ordinarily, it is good to take certain other minerals along with calcium to promote bone health, but maybe just now the calcium and vitamin D alone would be best. At least until the D calms down. I would agree that you need a higher vitamin D supplement, especially in light of the malabsorption you seem to be having. I take 3000 IUs in the summer and 6000 IUs in the winter. BTW, Freeda makes a 3000 IU vitamin D3, which I use.

You diet looks OK for the most part. I think there was some discussion here recently about avocados having a lot of fiber. Maybe that could be irritating your inflamed colon, since fiber usually doesn't help MC. Also, I cannot tolerate the nut milks. I don't tolerate the carrageenan they contain, but I also think that a large number of nuts all at once (even though in liquid form) can be irritating. And commercial products (like Rice Chex) are always suspect for us double DQ1 folks (even tho they appear to be OK from the label) Here'a a thought......for breakfast perhaps try cooked cream of rice cereal with cinnamon (if you like it), banana, and maple syrup stirred in for a little flavor. I just never had any luck with any kind of processed non-dairy milks. Another quick breakfast is a sweet potato nuked in the microwave. You can mash it with maple syrup, apple pie spice, etc. I don't do well with quinoa either. Maybe you could try some rice pasta with meat - the Tinkyada brand is best, IMHO. Also, like Tex, I couldn't tolerate citrus fruits/juices until I healed.

Thanks for your kind words and for asking about Rusty. I am still grieviing but focusing more now on the good memories and not the last few days of his life.. My gut is still not back to normal but is getting there slowly. Stress really does affect this disease!!!!!

Love,

Polly

[Tanya Lynn]

Tex and Polly,

Thanks again for all your knowledge and expertise on any subject
ask about here. Ya'll should write a book, really I'm serious.

You are both right, the magnesium tore by stomach up last night.
I was in the bathroom all night... No more of that calcium.

I do take extra 4,000 iu of Vitamin D, have been taking that it faithfully
since May of this year,and after looking for a Calcium supplement this morning
at CVS, every product either had corn starch or soy in them. I did find a
vegeterian CVS brand that's just calcium that I bought. But as soon as
I got home I looked at my Super High Potency Vitamin D 2,000 iu.... I found
the first ingredient says soybean oil, gelatin, vegetable glycerin, then corn oil...
Oh, what a dummy. I read the large bold print on the bottle that says,
No artificial color, flavor or sweetners, no preservatives, no sugar, no starch,
no milk, no lactose, no gluten, no wheat, no yeast, no fish, and sodium
free.
I have been taking these since May, when my dr. advised me to take 5,000 a day,
at that time I was deficient in Vit D. I read the label then and saw no dairy,
wheat, etc, but at the time I hadn't stopped the soy or gluten... Wow, why
do they have to put SOY in everything. Now, I will go try to find a Vit D I
can tolerate....

Polly,

Thanks for the tips on other things for me to eat. It almost sounds like
what I feed my grandson... Cream of Rice cereal with applesauce!!
I will try eliminating more from my diet per your tips. I was substituting
avocados for my love of cheese...

What is carrageenans?

I noticed someone asked you today on a recent thread, What did you eat
while you were going through your process of elimination? Is this info
posted anywhere here?

Sure hope and pray your tummy gets better soon.

Tanya

[tex]

Tanya,

As I recall, carrageenan is a gelatinous extract of seaweed, used as a stabilizer and thickening agent in some foods. Polly was the first to discover that it can be a problem, and for some unknown reason, several other members of the board are also sensitive to it.

There are some meal suggestions from past discussions in this forum:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=53

Be aware that some of those posts are now 5 years old, and opinions sometimes change, as we gain experience. For example, in the first post, I notice that Polly suggests using nut milks, but now she is cautious about recommending them, because even though they may not trigger an autoimmune reaction, they seem to bother some of us. Also, remember that ingredients of processed foods sometimes change over time, as manufacturers choose to "improve" their products. We have to constantly read labels, unfortunately.

I'm glad you found those issues with your vitamins. Hopefully, that will make life much easier for you, from here on. Don't feel like the Lone Ranger - we all make mistakes such as that, sooner or later.

Tex

[Robbie]

I have not read all of this thread. I will, when I have more energy.....

For now I wanted to mention that my mother just started having this same problem. She had it years ago when she first had part of her stomach removed and was not put on B-12 shots right away. Her local doctor tested her and her levels were good and he was not aware that she would have to take the shots because of her surgery, even if her level was normal. After she saw another doctor a year later and started taking her shots she got much better, with just hints of the problem now and then and only on the tops of her feet. Starting last July her feet and legs have been "on fire" most of the time. She was tested and she is not diabetic, but her B-12 level was off the chart - higher than it's ever been (it's been high since she started the shots, but her GI doc says it's supposed to be a bit high). I have been trying to find information on the net for her, and I saw one blurb about too much B-12 causing this problem, just the same as getting too little. I have not been up to researching more lately, but that does fit with her situation. I don't remember what her level was last time it was checked (which is often), but I do know it was not anything like it was when she was last tested. Of course, the vegus nerve was cut during her surgery, which can cause the same problem, so it might not be the B-12 at all. However, with her history of this problem being so bad right after surgery and then improving dramatically when she went on the shots, it very well could be something to do with her B-12 levels, even though it's so high right now. If I find more info on this I will post it, but, Tanya, since you said you take B-12 shots you might want to look into it yourself.

[Robbie]

I tried to search more about what happens when B-12 levels are very high and pretty much found nothing. I did find another site with a blurb about it possibly causing numbness, but I don't think it was a site we can trust. Some of the sites that seem trustworthy stated there are no known negative side effects from getting too much B-12.

[Gabes-Apg]

Robbie
i am catching up with my gal pals today who are both naturopaths

i will ask them the question about is there such a thing as too much B12 especially for those with a compromised digestion system

[tex]

Some of the sites that seem trustworthy stated there are no known negative side effects from getting too much B-12.

I tend to side with that opinion, though I have no proof. I take megadoses of B-12, B-9, and B-6, (to treat peripheral neuropathy). I was concerned about my B-12 level, because a section of my terminal ileum, (several inches), was removed in February, when my colon was removed, and all B-12 is absorbed in the terminal ileum, so I had my doctor test my B-12 level in July. The test showed a level of 903, (for a normal range of 10-914 pg/mL). Since I was so close to the upper limit, I asked my GP about it, and he said that it was nothing to worry about, (he takes the same megadoses of those vitamins as I do).

Many sources claim that it is dangerous to take more than twice the RDA of B-9, (folic acid), but I take 19 times the RDA, daily, with no ill effects that I can detect. As a side benefit, my hay fever allergy is not nearly as bothersome as it used to be. I still get some congestion, when the pollen count is high, or very high, but no runny nose, and no watery eyes. I no longer have to take antihistamines to treat it.

There is a lot of misinformation around, concerning vitamins, (and various other diet and medical issues, also, for that matter). Too many people have an agenda, especially if they are selling something.

Tex

[Gabes-Apg]

hi there
we dug out some of the texts books that my naturopath girl friends used 10+ years ago
they are copying the pages for me

long story short there can be a slight issue with too much Vit B12 mostly if you are not having Folic Acid and B6 at the same time.
and it depends on the folic acid and B6 levels prior to the Vit B12 being given
in naturopath world, to get the full benefit of Vit B12 absorbtion there is a ratio of Folic and B6 required.

they also explained that it is like when you have too much of one thing ie if you have a big night with copious amts of alcohol or a big day of meals with fatty foods, when you put a high dose of something into the body that it is not used to, the body may, can, will react.
reactions may also be influenced by other health conditions or symptoms.


hope this helps

[Robbie]

Tex, the doctor who operated on my mom said she would need to maintain a much higher level (higher than the limit), because of her surgery, but I don't think she ever got a number.

I'm with you, Gabes - there needs to be a balance. It only makes sense that her body could be reacting from getting too much of one and not enough of the others.

Thanks for your input. So far her feet and legs are still driving her nuts. We truly thought that the problem was behind her once she got on her B-12 shots and the pain settled down. Now it's back, with a vengeance

[tex]

Robbie,

My doctors didn't even mention that I might need to increase my B-12 intake, but fortunately, Polly pointed it out.

I'm with you, Gabes - there needs to be a balance. It only makes sense that her body could be reacting from getting too much of one and not enough of the others.

Look at the composition of the product that I'm taking, (Metanx), to see the proper ratio of B-12, B-9, and B-6 that one needs to take. IOW, if you boost the intake of one, the intake of the others probably needs to be increased by the ratio used in Metanx:

• L-methylfolate Calcium (as Metafolin®) 3mg
  Pyridoxal 5'-phosphate 35mg
  Methylcobalamin 2mg

Where

• Folic acid is the active form of L-methylfolate
  Vitamin B6 is the active form of Pyridoxal 5'-phosphate
  Vitamin B12 is the active form of Methylcobalamin

http://www.metanx.com/WhatIsMetanx

Note that both the B-12 and the Folic acid in Metanx are in a much more easily absorbable form. They differ from the "cyano"-based form, in that the cyanide is replaced by a methyl group.[1] This may explain why B-12 in methylcobalamin form seems to be more prone to build up in the body:

One study suggests that once absorbed, methylcobalamin may be retained in the body better than cyanocobalamin.[4]

From Wikipedia:

http://en.wikipedia.org/wiki/Methylcobalamin

Here is that reference - [4]:

http://www.veganhealth.org/b12/noncyanob12

Tex

[Robbie]

Thanks, Tex. I started taking Metanx two years ago and cut back on the shots (had been taking them regularly for fibromyalgia since 1994). I told Mom just a couple of weeks ago that I think she needs to ask her doctor for it. I read their site when I first started taking Metanx and it sounded good to me, but I don't really remember what I read. Obviously, I need a review. Maybe there's something I can print for her to show to her doctors.