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toomuchagony

Wondering Here... Is It Better To Treat My Ongoing D Or Not? If So With What?

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Hi folks!

Well gee, yesterday I'd posted an update about "feeling better" and immediately after hitting SEND on the post went into a major cramping/gas/bloating attack, had D movement again felt better for a few hours, then another not so bad attack again... Decided NOT to report am "better" anymore just in case I somehow JINXED me-self eh ;)

As I indicated within my other couple of posts here at the forums, I am new to Celiac (undiagnosed but in the process), so I do have (as ya all have had too I am sure ;o) quite a few "questions" about this disease and the situation I may be dealing with. Thus far, I have been simply "reading posts" on the forum over the last couple days attempting to avoid asking "dumb / already answered questions" (indeed since my D kept me up I read most of the night between bathroom jaunts which could be considered I suppose a "positive side effect from having D huh :o) However, unfortunately in some cases doing all the reading actually served to "confuse me" and left me still "wondering" so now I am compelled by my natural curiosity and desperate "need to know" to go ahead and ask a few myself. However, (in my being also new to forum posting) I figure that it is likely better to ask my questions seperately as their own "titled new posts" so that (assuming I do get replies eh :o that way others searching for that info later will be able to find it quickly and not have to read any unrelated info. I'm going to start with a querie regards my current most "pressing issue" (pun intended eh! ;)

So anyhoo... had a bad night... up with explosive D until 3 am... finally fell asleep though but woke at 8 to have another explosive D movement... importantly (I think) though, the D is not producing a lot of cramping in the process at this time... just GAS appears to be causing me cramping (again, I think)

At any rate... I thought of "taking Extra Strength Liquid Kaopectate" for the D to see if it helps that but unfortunately when I attempted to "research the gluten content" I ran into some major confusion due to finding contratictory info on this. I did find the Kaopectate was "listed on gluten-free lists", but then when I further read some of the prior posts in the forum I discovered several which declared it as it NOT being gluten-free... (the 888 info line is closed on weekends of course too) but now I am soooooooo confused.... does anyone KNOW really, is it or is it not? AND also whether or not it is, is it the right thing to do to attempt to treat the D with meds to stop it or is it better to let it alone to run it's natural course, (however difficult or long that may be eh)? Help much appreciated naturally.

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I go about it depending on what is going with me that day. If I have to work, get sleep etc. I take Immodium to stop the D. Otherwise I usually let it run it's course. I don't know about the Kao if it is gluten free or not. I know the liquid Immodium isn't but the pill form is fine.

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I go about it depending on what is going with me that day. If I have to work, get sleep etc. I take Immodium to stop the D. Otherwise I usually let it run it's course. I don't know about the Kao if it is gluten free or not. I know the liquid Immodium isn't but the pill form is fine.

THANK YOU soooooo much Generic for your reply to my post.... I've been checking the board all day and was starting to assume that I'd just asked a really truly "stupid" question since no one replied to it at all eh :(

Happens that I am having a BAD day in the D department, and have thus far not been able to get out of my bathroom for more then 15 minutes... BUT just as soon as I can "go out to store" (I have to assume that since I actually have NOT eaten more than a "cup" of ANY food in the past few days that eventually D HAS TO stop), OMG doesn't it!! After all, what exactly is "coming out if nothing goes in"? Anyhoo... I am going to go get the Immodium pills when I can just to be absolutely SAFE taking it... Again, thank you for sharing your answer with me. :)

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Immodium tablet are gluten-free, and very effective. Many of us carry them with us at all times in case of an unexpected gluten incident. If you can let nature run her course that is best, but when life gets in the way, I trust Immodium.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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Immodium tablet are gluten-free, and very effective. Many of us carry them with us at all times in case of an unexpected gluten incident. If you can let nature run her course that is best, but when life gets in the way, I trust Immodium.

THANKS Peter... well happy to say, I did get to the store last night and did get the Reg. Immodium pills there (just in case), BUT indeed I chose to forego treating the D for just one more night in end, and extatically I can share that thus far today I have NOT had any further D hit me so good call for it perhaps eh. As I've already noted in another thread post today, I am restricting my diet input to just "lean strip loin steak fried dry no oil with organic garlic powder" and "cooked apple" for yesterday and now today... (least I KNOW that those are in fact Gluten/Dairy/ and well sheeeesh eh pretty much everything else safe too huh! ;) BORING as all get out fer sure... BUT far less a burden than for me to suffer ANY Celiac /or related symptoms! Frankly, if it were necessary, I CAN and will eat steak & fruit for the rest of my days upon the Earth to be free of the horrid pain of this past couple months! THANKS again to you for sharing with me now as I yet remain so blatantly ignorant of what appears will prove to be my own "lifelong" Celiac condition. I am extremely grateful to find this forum where I can seek and find a knowledgeable and experienced (not to mention compassionate & kind) group of folk who have taken the "difficult journey" before I so can bestow their wisdom to assist me in my own "walk with Celiac".

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Immodium is great and works quickly. Take it while you are experiencing chronic diarrhea. It's not good to let non-stop diarrhea continue. Does your GI know about this diarrhea?

Also, perhaps the red meat can be too heavy in fat (even though it is lean). Beef fat can sometimes be hard to digest. But please get others opinion on this one..


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Immodium is great and works quickly. Take it while you are experiencing chronic diarrhea. It's not good to let non-stop diarrhea continue. Does your GI know about this diarrhea?

Also, perhaps the red meat can be too heavy in fat (even though it is lean). Beef fat can sometimes be hard to digest. But please get others opinion on this one..

Thanks debmidge... I am going to be posting a "new topic thread" late tonight to attempt to discuss my sadly "negative (FALSE) blood test results" and shall include a bit more info as to my minimal progress with my symptoms thus far... BUT did want to reply to ya to acknowledge yer input and give a brief answer to ya...

Firstly, to date I've NO GI specialist as yet, I do now have an appointment to see one on Apr 7th and that was/is actually an "expedited/stat appointment" only due to my going and having a muted (quiet) temper tantrum at my Dr office when I was informed they had wanted me to wait until JUNE to get seen by him!!! Sheeeeeesh, NOT very dang likely in my book! Happens I lost a whole 5 lbs over the weekend, and so adamantly insisted that they "move this thing along before I turn INVISIBLE and they can not even SEE ME when I arrive for an appointment!" thank God alone though I do go in April.

As to the Immodium and my D, D, D, D sheeeesh... well yesterday I took the max allowable 24 hr dose and it did NOT at all stop the D, then again this morn more D, took half the daily dose so far and finally (well gee let me knock on wood though before typing ;o) it appears my D is now "taking a rest" and well I am hoping and praying, maybe even is gonna at last abate and my stool get firmer again. I am naturally tired of the D, but moreover I am abundantly concerned with the dramatic weight loss. I have had non-stop D now since Feb 11th and have lost around 19 lbs since that day (prior I did weigh a'tween 135 & 140 constantly fluctuating within that range, now I weigh, well this morning just 118 lbs

As for the "steak"... while I did (about the same) as far as eating it, and reaction afterward, I switched my current diet to "JUST boiled Potatoes" for yesterday and thus far today, same reaction as anything else I try to eat... BUT am happy to say that the "gas/bloating" this afternoon has been lower than previous days and only "minor phantom like cramps" (from gas I think) so progress huh ;)

Again thanks for sharing with me, I appreciate yer input greatly.

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This is a tip I learned from an IBS board--it doesn't treat or cure anything, but in a lot of cases it can prevent D.

I take 2 Caltrate 600 with Vitamin D every day--one with breakfast and one with dinner. The "right" dose varies from person to person. I started with 3--one at each meal, but found I could go with 2 and I have not had D since last summer.

I will get a gluten reaction if CC'd, of course, with all the usual symptoms except the D. I still feel lousy, but I don't have to worry about the non-stop D or an accident like I used to constantly.

The thinking behind this is that calcium carbonate (Caltrate) is not absorbed as well as other forms of calcium. The excess ends up being digested and absorbs excess fluid in the colon.

It doesn't work for everyone, but it did for me and D was one of my worst symptoms. I went from literally not being able to be 10 feet from the bathroom shortly after being diagnosed to almost not worring about D at all.

I still carry Immodium in my change purse, and expect that I always will. If I'm reacting and have to be away from home, I still sometimes take it as insurance, but honestly, the calcium has worked like a charm.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Thanks debmidge... I am going to be posting a "new topic thread" late tonight to attempt to discuss my sadly "negative (FALSE) blood test results" and shall include a bit more info as to my minimal progress with my symptoms thus far... BUT did want to reply to ya to acknowledge yer input and give a brief answer to ya...

Firstly, to date I've NO GI specialist as yet, I do now have an appointment to see one on Apr 7th and that was/is actually an "expedited/stat appointment" only due to my going and having a muted (quiet) temper tantrum at my Dr office when I was informed they had wanted me to wait until JUNE to get seen by him!!! Sheeeeeesh, NOT very dang likely in my book! Happens I lost a whole 5 lbs over the weekend, and so adamantly insisted that they "move this thing along before I turn INVISIBLE and they can not even SEE ME when I arrive for an appointment!" thank God alone though I do go in April.

As to the Immodium and my D, D, D, D sheeeesh... well yesterday I took the max allowable 24 hr dose and it did NOT at all stop the D, then again this morn more D, took half the daily dose so far and finally (well gee let me knock on wood though before typing ;o) it appears my D is now "taking a rest" and well I am hoping and praying, maybe even is gonna at last abate and my stool get firmer again. I am naturally tired of the D, but moreover I am abundantly concerned with the dramatic weight loss. I have had non-stop D now since Feb 11th and have lost around 19 lbs since that day (prior I did weigh a'tween 135 & 140 constantly fluctuating within that range, now I weigh, well this morning just 118 lbs

As for the "steak"... while I did (about the same) as far as eating it, and reaction afterward, I switched my current diet to "JUST boiled Potatoes" for yesterday and thus far today, same reaction as anything else I try to eat... BUT am happy to say that the "gas/bloating" this afternoon has been lower than previous days and only "minor phantom like cramps" (from gas I think) so progress huh ;)

Again thanks for sharing with me, I appreciate yer input greatly.

Some reasons for non stop diarrhea (other than celiac disease)

1) Gall bladder disease (sometimes, not always)

2) colitis

3) pancreatic disease and insufficiency of digestive enzymes (cannot digest fats/veggies/starches witout these enzymes - result is diarrhea

4) colon cancer

5) wheat allergy and/or other food allergy (soy, herbs, etc.)

Keep that April 7th appointment as you need to have medical advice asap.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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