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Alicegf
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 17 Aug 2012

Posts: 89
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten
Location: cincinnati

PostPosted: Sat Sep 30, 2017 10:47 am    Post subject: unusual flare Reply with quote

Hi everyone,

I guess I'm a foul weather friend in that I usually don't post unless I have a problem. I apologize! I'm spoiled because my remission of 16 years has been so smooth. I rarely get flares, and when I do they are either very short- lived or due to very obvious triggers.

I've had this last flare for 3 weeks, alternating between D and C. This is very unusual for me, and I can't seem to identify a possible trigger. It started 2 days after I returned from a short trip to visit family in Mn. (I live in Ohio). I came down with a slight cold while there and took a couple Walgreen's gf benadryl first thing when I got home. 2 days later the D started. Took 6 Pepto's, started bland diet, took 1 Immodium, then got C for 4-5 days.

Then back to a couple small normans and
D in one day. Repeated same treatment, except no Immodium. Went on bland diet. C returned for 4 days. Then same progression to D again. Repeated Peptos and 1 Immodium last night (so I could sleep.)

I'm trying to be very succinct for your benefit, and also because this keyboard is not good and keeps doing things I don't want.

Any thoughts, Tex, Peggy? Can one become more sensitive with age (I'm now almost 71.) Otherwise I feel very well, for the most part. I rarely get colds, flu, etc. I have a few conditions that I take meds for, but nothing new.

I wish everyone the best of health and peace.

Love,
Alice
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Alicegf
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 17 Aug 2012

Posts: 89
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten
Location: cincinnati

PostPosted: Sat Sep 30, 2017 10:58 am    Post subject: Reply with quote

I meant Polly!!! One of my good friends is a Peggy and I must have her on my mind as well😛!!
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:22 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sat Sep 30, 2017 11:33 am    Post subject: Reply with quote

Hi Alice,

It's good to see a post from you again, although I'm sorry that you needed to write one. Alternating D and C was my pattern of reactions back before I changed my diet. This can be a complex disease and it's sometimes surprising what can cause a reaction. The first thing I would look at would be my meds. Have you made any changes lately? And if you regularly take any pills, has your pharmacy made any substitutions lately? Sometimes a change of manufacturer can cause a flare.

If you can't find a problem with your meds or your diet, you may have developed bile acid malabsorption (BAM). This can apparently happen occasionally for no obvious reason. Bile acid sequestrants are relatively safe to take (their only caveat is that you have to take them apart from other meds or vitamin supplements, because they will make them unavailable for absorption also). They're available by subscription only and it appears that almost all of us require the Regular Sandoz formulation. The Lite version rarely works and generic versions rarely work for us ("us" referring to MC patients). It may take a while to find the right dose — that has to be determined by trial and error. Here are a couple of threads describing how Polly "rediscovered" this old remedy.

A New Way to Look at MC

More on Bile Acids (an important piece of the MC puzzle?)

To read my insight into this phenomenon, here's a link to a short article about why I think it happens:

Diarrhea caused by bile acid malabsorption (BAM) may be due to inadequate cortisol

If you decide to try this, please keep us posted.

Love,
Tex
_________________
cowboy

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.
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Alicegf
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 17 Aug 2012

Posts: 89
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten
Location: cincinnati

PostPosted: Sat Sep 30, 2017 1:35 pm    Post subject: Reply with quote

Hi Tex,

I hope you are well, and thanks so much for your reply. I read the 3 links that you suggested and found them very interesting. I actually tried Questran back when I first got
Diagnosed. It didn't help then, but I suppose that doesn't mean it wouldn't help now.

I checked all my meds and there was no change there. I was thinking maybe I'll try the treatment that put me into remission in 2000: pepto for 8 weeks. Also, a couple years ago Polly suggested eliminating dairy if my flare didn't clear up. I never had to try it then, but maybe now I should. Dairy has ever bothered me, but both my mother and my sister were (are) lactose intolerant. I drink only almond milk, but I was eating ice cream, yogurt, cheese and butter.

Thanks again for keep the board alive and well!

Alice
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:22 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sat Sep 30, 2017 2:02 pm    Post subject: Reply with quote

Alice,

If you are not now avoiding dairy, that may be your problem. Everyone becomes lactose intolerant when they have intestinal inflammation. Everyone. Even if their inflammation is due to a virus such as the flu. The lactose intolerance will fade away after the inflammation is gone, but as long as our guts are inflamed, they are unable to produce normal amounts of the lactase enzyme, so we are lactose intolerant.

Tex
_________________
cowboy

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.
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7136
User's local time:
2017 Oct 22 - 6:22 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Sat Sep 30, 2017 2:17 pm    Post subject: Reply with quote

the other thing that comes to mind with your D and C issues.

Magnesium!!

are you taking magnesium / using topical magnesium?
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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JulieHaggy

United States

Joined: 24 Aug 2017
Posts: 16
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : dairy,soy,corn,eggs,yeast,almonds

PostPosted: Sat Sep 30, 2017 4:20 pm    Post subject: cholestryamine Reply with quote

I hope you don't mind if I jump into your conversation. Tex, I was very interested in your comment about the Lite Sandoz not working well. I tried that last week and had more D than normal. I didn't realize there is a regular powder. What do you suppose makes the regular work and not the lite? I think I will ask my doc to order the regular and give it a try.

As always, I learn something new every time I surf this forum!!

Julie
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JulieHaggy

United States

Joined: 24 Aug 2017
Posts: 16
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : dairy,soy,corn,eggs,yeast,almonds

PostPosted: Sat Sep 30, 2017 4:24 pm    Post subject: p.s. Reply with quote

I no longer have a gall bladder so does that mean more bile is likely to make it into the intestines?

Julie
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30597
User's local time:
2017 Oct 22 - 2:22 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sat Sep 30, 2017 5:57 pm    Post subject: Reply with quote

Hi Julie,

If I recall correctly, the problem with the Lite version (at used it used to be the problem) is that it contained lactose. It might have been some other ingredient, but anyway, it had different ingredients than the regular version and that seemed to be the problem.

If you no longer have a gallbladder that doesn't necessarily mean that your liver will produce more bile, but without a gallbladder, the bile will dribble into the common bile duct and into the duodenum whenever it is produced, so it can show up in the small intestine at the wrong time (like when you get hungry, rather than after you've eaten). This often (at least initially) causes D, but the digestive system of some gallbladder surgery patients manage to adjust to it after a few months. Some patients continue to have D.

The article at the following link explains how it should work (normally) and what happens when BAM develops:

Diarrhea caused by bile acid malabsorption (BAM) may be due to inadequate cortisol

I hope this is helpful.

Tex
_________________
cowboy

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.
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JulieHaggy

United States

Joined: 24 Aug 2017
Posts: 16
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : dairy,soy,corn,eggs,yeast,almonds

PostPosted: Sat Sep 30, 2017 6:28 pm    Post subject: cholestryamine Reply with quote

It has fructose in it so maybe that is the culprit...

Thanks for your help, Tex

Alice...Good luck to you in getting back into remission. It's reassuring to know that people can actually achieve remission!

Julie
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Alicegf
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 17 Aug 2012

Posts: 89
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten
Location: cincinnati

PostPosted: Sat Sep 30, 2017 8:37 pm    Post subject: Reply with quote

Tex, thanks for the info about lactose intolerance. I didn't know that. My gut feels less inflamed than last week.

Babes, (this stupid keyboard won't let me type your correct name!?

I do take magnesium, but maybe not enough. What dosage is needed?

I do feel like something of a wimp, having been lucky enough to achieve R for so long. Now a little (relatively) flare
Has me stumped. I know many, if not most, of you have had a much more difficult time.

Yes, remission is possible. To stay there, I've been very strict about being gf for 17 years.
Much easier now than it was in 2000, when nobody had even
heard the word "gluten"!

Alice
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7136
User's local time:
2017 Oct 22 - 6:22 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Sat Sep 30, 2017 8:49 pm    Post subject: Reply with quote

Magnesium dosage
- check the small print on the label of your oral magnesium product to double check the 'Essential Magnesium' dosage

daily RDA is about 350-400mg ELEMENTAL magnesium per day.
if you are deficient then you will need more than 400mg elemental magnesium per day

a good way to increase daily intake without causing any D issues is to do epsom salt foot soaks or use topical magnesium oil.
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Alicegf
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 17 Aug 2012

Posts: 89
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten
Location: cincinnati

PostPosted: Sun Oct 01, 2017 4:55 pm    Post subject: Reply with quote

Thanks, Gabes! I take 250 mg. per day. My last blood work showed normals levels of the magnesium. I actually used to take 500 mg. daily. It's included in my calcium pill. Maybe I need to take a little more.

Alice
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7136
User's local time:
2017 Oct 22 - 6:22 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Sun Oct 01, 2017 5:18 pm    Post subject: Reply with quote

If you are taking calcium then you will need ADDITIONAL magnesium
you will need daily RDA of magnesium PLUS magnesium at same amount of the calcium dosage as a minimum.
(the body uses magnesium to regulate calcium)

two reason why the blood test for magnesium is not entirely accurate:-
if you had magnesium on the day of the test, this would skew results;
also - the normal ranges are based on the fact that majority of the population is magnesium deficient.
(Dr Dean who is a guru on magnesium deficiency has done extensive research and written articles about this)
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Polly
Moderator
Moderator


Joined: 25 May 2005

Posts: 5161
User's local time:
2017 Oct 22 - 3:22 AM


Food Intolerances : gluten, dairy, soy, corn, yeast, chocolate, tomato, white potato, celery, sesame, carrot, yellow squash, lamb, pork, mango, strawberry, almond, cashew, vanilla, grapefruit, raspberry, avocado, mustard, paprika, cauliflower, cucumber, plum, and more!
Location: Maryland

PostPosted: Sun Oct 01, 2017 9:12 pm    Post subject: Reply with quote

ALICE!!!!!

So good to hear from you, my old buddy! Sorry to hear about the flare. The advice you have gotten so far is great. Don't forget, you and I are true pioneers here......together we have over 30 years of experience with MC. So we are still charting the course with the natural history and longterm experience of this disease.

Tex, thanks for throwing BAM into the loop.....it is diagnosed far too infrequently, IMHO. In Alice's case, I am thinking it may not work, given that her symptoms seem to be C-dominant. I think it works best in cases of constant D symptoms. I like your theory about the virus/lactose issue, so I do think it would be wise to cut out dairy until all is well-resolved.

Alice, could a change in diet during your visit have contributed? Have you added in any new food or personal care products? As an aside, I am currently on a kick to eat organic/non-GMO foods as possible. I have come to believe that it may be the chemicals (Roundup, etc.) put on the crops that have been major contributers to the huge increase in GI disorders now being diagnosed; for example, millennials with colon and liver cancer, cancers that previously were rarely diagnosed before age 50. Saw my GI doc recently and she was talking about this - mentioned a huge increase in eosinophilic esosophagitis, which she never used to see. No one knows the cause but food sensitivities are suspected. Is also seeing actual gluten ANAPHYLACTIC reactions for the first time.

Re cholestyramine, my experience is that the Sandoz generic (Questran was the original brand name) works best for me. The Par generic did not work at all. The reason I can't do "lite" versions is because I am highly sensitive to any and all "phony" sugars.

Anyway, good luck. It sounds as if things are calming down. Please keep us posted, and feel free to PM me if you wish to chat further.

Love,

Polly
_________________
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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