Update

[sunny]

My stool Calprotecrin test was negative....from what I could find, this gives an indication of gut inflammation. My PC doesn't know what this means and is waiting to consult with the doc in the clinic who specializes in gut issues.....but she is out recovering from surgery.

She is concerned that I am still having loose stools and that the watery diarrhea is back along with severe cramping. I was doing fairly well, then tried the veggie juices for 5 days but then cut out everything but meat , turkey & pork and a little rice once in a while. I've tried Rice Chex a few times , and have coconut milk ( nothing but coconut & water)in my decaf coffee a few times a week, otherwise I have tea. But mainly I'm eating a very limited diet....no fruit or veggies.

Once again, I'm waking up more frequently in the middle of the night with diarrhea. Those episodes of cramping & WD had stopped the second week on Pepto. This is the 4th week on Pepto and and taking 9 tablets daily. I've also started having a few accidents this past week and that had stopped before.

My doc is concerned about my kidney numbers reflecting stress and also the toll on my body of from so much diarrhea and the resulting lack of nutrient absorption. I often forget that I'm pushing 80 and she reminded me that my body is not as resilient as it was.... she isn't pushing an agenda as she recognizes she doesn't know how to treat this but is honestly concerned about me and is actually depending on the group's guidance ...(That's a shocker, hey?)
I keep hoping that any day now I'll begin to see some real healing.... I'd appreciate an infusion of hope from someone....hint hint....
Sunny

[Gabes-Apg]

Sunny
healing with the right nutrients takes time - 6-8 weeks.
as we age, the ability to heal slows
if before this incident you may have been deficient in Vit D3 and or magnesium (or other key nutrients) then the body needs to correct those deficiencies before optimised healing can occur.

along with that - if you are having accidents this week, this makes me think that something you are eating /or having regular contact with is causing excess inflammation.
my other thinking is, there might be something food wise or in your environment that was causing inflammation but not enough to cause major symptoms, the veggie juices tipped you over the edge and now you are more sensitive to the item that was causing mild inflammation before.

is there anything in your environment that has changed in the last 6 months?
have you had your Vit D level checked in the past 6 months?

[sunny]

Thanx, Gabe for the reply.
That Stool Calprotecrin test was negative for inflammation so I am confused since I'm having these symptoms. My doc is unfamiliar with this test but it was recommended by another doc in her office who specializes in gut issues....this is a functional medicine clinic with docs who are also MD's.

I've been on AIP since September of 2015 and had begun adding gluten free flours . My relapse came after taking 60 mg of prednisone , then stopping it since it was decided I did not have Giant Cell Enteritis. The prednisone caused a huge flare, then I began having normans consistently for 3 weeks, but when I stopped the prednisone, I began to have severe gut problems.
All through this time I was eating AIP.

My Vit D was supposed to be checked in last blood test but she forgot to include it in the order. I've been taking 4,000 units of Vit D daily and decided to up that after reading about Vit D. I'm careful about the magnesium , using ReMag and Calm Powder as I have been doing for months.

My concern about the accidents is that they have been slowly coming back and I am eating less, not more types of food than I did with AIP...mostly proteins and some rice. These aren't sudden symptoms but they have been gradually increasing.
Last night was a first...it happened during sleep, so I had to take a shower at midnight....I have had many near misses at night, frequent showers in the wee hours of the morning, but all that had stoppped .....the cramps and the WD and I just had the "mud."

My environmental change was moving to a different Retirement Residence in a different county. I prepare all my meals, there is not gluten in the apartment; the apartment was cleaned before we moved in.
I've stopped eating out in restaurants.

So maybe I should just eat proteins for a few days as one of the members suggested in one of the stickies and see what hpapens....maybe I can effect a "reset."
Sunny

[tex]

Sunny,

While the calprotectin test is useful for detecting inflammation associated with Crohn's disease and UC, unfortunately it rarely shows an elevated test result for MC. Why? Because the calprotectin test result indicates the migration of neutrophils into the intestinal mucosa. Neutophils are significantly involved with the inflammation pattern associated with Cronn's disease and UC, but very little neutrophil infiltration occurs with MC. That makes the test primarily useful only for distinguishing between MC and Crohn's disease or UC. IOW, your test result confirms that you have MC, not Crohn's disease or UC.

I'm puzzled as to why your symptoms are so persistent with this flare. I have no idea how much of Dr. Dean's magnesium products (or her other products) you are taking, but because they are unconventional (concentrated) forms, they can cause unexpected effects. I'm beginning to wonder if you might be reacting to one of the magnesium products you are taking, and/or possibly the salicylate portion of Pepto-Bismol. About 18 years ago, Dr. Fine published a case study about a patient who reacted to mesalamine (another salicylate-based medication).

In trials of mesalamine for inflammatory bowel disease, about 5 percent of patients report diarrhea. This figure is lower than the 13 percent incidence of diarrhea associated with the use of olsalazine (a 5-aminosalicylic acid dimer linked chemically by an azo bond), which causes intestinal fluid and electrolyte secretion.3 Mesalamine may directly induce similar but less potent secretion; alternatively, the mechanism of secretory diarrhea may involve the effect of the drug on arachidonic acid metabolism. By inhibiting the enzyme cyclooxygenase and consequently decreasing prostaglandin synthesis, most NSAIDs are thought to shunt arachidonic acid into a lipoxygenase pathway producing leukotrienes and other hydroxyeicosatetraenoic acids. These substances can produce intestinal inflammation and diarrhea and are thought to mediate NSAID-induced flares of inflammatory bowel disease.1 Although mesalamine inhibits both lipoxygenase and cyclooxygenase in vitro (and should decrease the production of both leukotrienes and prostaglandins), clinical manifestations and results of fecal eicosanoid analysis in our patient suggest that this drug may stimulate leukotriene synthesis as do analgesic NSAIDs and, in turn, lead to diarrhea or intestinal inflammation (or both) in patients with inflammatory bowel disease.

Diarrhea Associated with Mesalamine in a Patient with Chronic Nongranulomatous Enterocolitis

MC is a form of nongranulomatous enterocolitis. What I'm saying is that salicylates can promote the production of inflammatory leukotrienes, similar to NSAIDs in some IBD patients.

Your kidney function test results are concerning. The only time in my life when I had compromised kidney function (EGFR well below the normal range) was when my magnesium deficiency was at a severe level. But another problem that can occur is too much magnesium in the blood. This can overwork the kidneys because it's their job to purge the excess magnesium in order to keep blood levels of magnesium in the "normal" range. And too much magnesium can cause many of the same symptoms of a magnesium deficiency. Except that too much magnesium tends to cause D, whereas too little causes C.

Or you might be reacting to some other supplement or medication. And the stress that comes with a flare can cause the flare to be self-perpetuating. I hope that you can track down the problem soon.

Tex

[Gabes-Apg]

Tex has answered the question about Calprotectin and maybe why the pepto is not working for you...

My environmental change was moving to a different Retirement Residence in a different county. I prepare all my meals, there is not gluten in the apartment; the apartment was cleaned before we moved in.
I've stopped eating out in restaurants.

along with the pepto not working, maybe there are 'well hidden' none food related triggers in this new living place.
I am part of biotoxin forums and getting ill when moving to a different house is common, i will list the common things that you may want to research
- heating and cooling systems, have they been serviced / cleaned recently? and importantly free of mold
- is there any evidence of water damage or mold in any rooms, cupboards and especially the bathroom? using bleach on mold does not remove it, it just takes the colour away. and this is a common trick for selling/end of lease, as at the time of inspection there is no obvious signs of mold.
- similar to this the point above - the roof space area, is it dry and clean? what type of insulation is in there?
- are there any garden beds adjoining the house? if so what is the wall condition behind/near these garden beds?
- are there different plants/trees/flowers near your windows? that could be causing histamine type inflammation?
- flooring? there can be issues with things like laminated timber and carpet -

http://www.survivingtoxicmold.com/home

to give you an idea of the toxicity of mold in current day - why is it contributing so much to health issues now compared to 10-20 years ago - Wifi and EMF items, ie mobile phone, cordless land line phones, tablets, wifi modems, microwaves etc etc can make mold 600 times more toxic in the home. along with the amount of emf from power lines, ie lots of housing close together along with things like electronic smart meters attached to homes.

based on what you have shared, and Tex's reply above - I wouldnt worry to much about changing the eating plan too much for now..
I would consider changing treatment protocol, maybe look at using cholestryamine.

some discussions from the last 12 months that you can look at
http://www.perskyfarms.com/phpBB2/viewt ... bile+salts
http://www.perskyfarms.com/phpBB2/viewt ... t=questran

and of interest - cholestryamine is one of the treatment protocols for mold/biotoxin illness...

hope this helps

[Vanessa]

Hey Sunny,

I think I would cut out Natural Calm. It is only about 4% absorbed and is known to cause D......

[brandy]

I reacted to Natural Calm

[sunny]

Thanx everyone for your helpful suggestions....I have been busy going through files here and I am so thankful for all the links you provided!
Tex,
Thanx for the explanation of the calprotectin test....that makes sense and it was a relief to think I probably don't have Crohn's or UC!
As for Dr. Dean's ReMag, your comment moved me to check just how much I am taking! I put 3 tsp of the mag & 3 tsp of the ReMyte in a 1.5 liter bottle; then I pour that into a pint bottle to sip on through the day....the thing is I often only drink one pint... and I only use 1 tsp. of Calm at bedtime so the reality is I am not getting enough Magnesium and I need to re-calibrate and be more deliberate in taking the mag.
But it was the comment about salicylates and Pepto that hit home and made sense so I stopped the Pepto yesterday. Plus the last sentence about stress started a cascade of thoughts that have been bearing fruit.
The Debate is about to start so will sign off for now and reply later to others who helped.
Sunny

[sunny]

Gabes,
I really appreciate the suggestions and links! Living in this Retirement Residence, which is around 10 years old, the biotoxin issues seem less influential. By state regulations, there is a schedule maintained for cleaning ducts, windows; the heating & cooling systems are maintained on a schedule for us.
The gal who cleans weekly for us is willing to use the cleaners I make in advance so I can reduce the chemicals used. I am more aware now of these issues and sure appreciate the links.

The suggestion to look at treatment and perhaps changing to cholestryamine led me to research this , and it seems to make sense. Since stopping the Pepto, I can now see the color of the WD and it's usually yellow, and from what I've read, that's an indication of BAM.

And Polly wrote that 60% of Lymphocytic Colitis sufferers are impacted by BAM. So I've been checking the various brands and reading posts of those who have used it.
Another plus of using Cholestrymine, as you pointed out, is it's usefulness for mold/bio-toxin illness.
And, yes! Your post helped a lot!
Sunny

[sunny]

Vanessa,
Thanks for weighing in. I've used Calm for several years and it hasn't bothered me when I was not symptomatic; that said, that was then , this is now! I was unaware that it had such a low absorption rate.
Thanks for that info! I only take a tsp at night, but maybe I'll just stick to ReMag. I'm just trying to se up the big can I have!

Brandy,
Thanks for that info that you reacted to calm...it echoed what Vanessa said and made me look in that direction.
I was advised years ago by a Nutritionist to use it, and I just kept with it. Good to know it's a possible source of problems for me.

Sunny

[Polly]

Hi Sunny,

As I was scrolling down this thread, I immediately thought "BAM"! And then I saw that it has crossed your mind too. I would definitely suggest a trial. I use the regular cholestyramine, not the lite. If you would like to discuss further, please feel free to PM me.

Polly

[tex]

Hi Polly,

You've been successfully using cholestyramine now for a number of months, so you probably know if/how much it has affected your lipid panel results. In another thread, Sunny asked a question regarding her concerns about the potential effect of cholestyramine on her already-low cholesterol level (139, as I recall). Because of evidence that significantly higher cholesterol levels are associated with improved longevity after the age of 65 or so (some studies show that levels over 300 mg/dL are associated with the highest actual longevity rates after age 75), it would be beneficial to know how much effect cholestyramine typically has on cholesterol levels that are already relatively low.

So I'm wondering if the cholestyramine has had a big effect on your cholesterol level, or only a relatively minor effect. Also, do you know of any practical way of increasing one's cholesterol level while following the type of restrictive diet that most of us use?

It's great to see that the cholestyramine continues to work so well for you.

Love,
Tex