How long before Pepto works?

Chrisdat · Post by **Chrisdat** » Mon May 19, 2014 6:45 am

I am on 9 MG. Endicort. Initially good results, showed some improvement in LC. But recently had a set-back with no known trigger. I am strict GF/DF/SF/EG free. Explosive nighttime D just started up again, leading to dehydration and more weight loss.

Dr. put me on Pepto at 9 a day. I have used for 4 days. Now I have explosive black D:) No improvement yet.

How long should I give Pepto a try before I see some, even marginal improvement?

I am nervous about tinnitus, I've had before many years ago. But it resolved on its own.

I am willing to give Pepto a full eight week try? But was just wondering when I would see some small results, so that I don't keep using if I'm not a responder to the Pepto?

BTW, Dr. wants me back on Delzicol today. So that would be Pepto, 9 MG Endicort and Delzicol.

dfpowell · Post by **dfpowell** » Mon May 19, 2014 7:45 am

I had good results right away with Pepto, have you tried Imodium? Have you been on Delzicol before and did it help? I did not have much success with Asacol (same med different name).

Post by **tex** » Mon May 19, 2014 7:59 am

Sorry to hear that you're having a symptom relapse. According to published trial results, typical treatment time to remission is about 2 weeks for most MC patients taking the Pepto treatment. (without Entocort).

The problem with taking 3 anti-inflammatory medications at the same time is that if you react to either one of them (which is somewhat common), then there is no way that one of the others can overcome that adverse reaction to bring remission, and there is no way of knowing which one is causing the reaction. And from a statistical viewpoint (if I still correctly remember my training in probability and statistics), taking 3 meds at the same time raises the odds of having an adverse reaction by a factor of 6. That's why it's always always best to try one medication at a time.

Still, it might work (provided that you tolerate all of them). Good luck with this. I hope it turns your situation around.

Tex

Chrisdat · Post by **Chrisdat** » Mon May 19, 2014 8:02 am

Was on Dezicol before for 3.5 weeks, no results. Added Endicort, initially very helpful results for about 2 weeks. Stopped Delzicol concurrently. Then downhill slowly for last 3-4 weeks, now very bad.

Imodium makes D slow down but vomiting returns with a vengeance. Seems that if I stopped (or stopped-up) the D, my GI tract rebelled and said, now I'll come out another way.

D and vomiting at the same time has been a constant part of my LC when in a bad flare. Endicort has helped significantly limit the vomiting.

Anybody else have experience with time it took Pepto to make a difference in their D?

Chrisdat · Post by **Chrisdat** » Mon May 19, 2014 8:05 am

Sorry Tex, we were posting at the same time. I'll try the Pepto for 2 weeks. Very helpful.

I'll tell Dr. I'll wait on restarting Dezicol till we are sure of Pepto results. Thanks

Post by **tex** » Mon May 19, 2014 8:42 am

Chris,

I can't remember — have you tried an antihistamine? The combination of D and vomiting brought that question to mind.

Tex

Leah · Post by **Leah** » Mon May 19, 2014 10:44 am

It sounds like you are still eating something that you are reacting to since it's gone right through the Entocort. Histamines could be it, but it's still pretty suspicious that the reaction is so severe on the drug. Have you done Enterolab testing? Maybe one of the proteins you are eating is problematic.

Leah

Zizzle · Post by **Zizzle** » Mon May 19, 2014 1:59 pm

I took Pepto in the beginning and it really helped decrease the bathroom visits and odor, but I still had some D due to continuing food sensitivities I was unaware of. I think I'm about to give Pepto another try, after reading interesting info about Small Intestine Bacterial Overgrowrth (SIBO). It appears SIBO that results in diarrhea is caused by hydrogen-producing bacteria overgrowing in the small intestine. Methane-producing bugs in SIBO cause constipation by decreasing motility. Anyway, I've had a total elimination of odor when I take Pepto, which should mean I am hydrogen-dominant, since the Bismuth soaks up the hydrogen. Apparently the bismuth in Pepto can even KILL these bacteria. I never took 8 pills a day . I usually took 4. It's very effiicient for me, even at low doses.

I recently tried to take Nystatin to kill yeast overgrowth, and I think those 4 days did enough to alter my hard-won bacterial balance (I had been in LC remission for several months). My D is watery, orange, and malodorous, but infrequent and low volume. I'm getting more digestive upset after I eat (which I rarely had before). So I think I may have SIBO, and Pepto may be my answer without having to resort to antibiotics.

Here's an excellent post explaining what SIBO is:

http://syontix.com/small-intestinal-bac ... hat-is-it/

Here's a roundabout thread from another forum discussing Pepto use for SIBO:

http://forums.phoenixrising.me/index.ph ... tment.263/

Chrisdat · Post by **Chrisdat** » Mon May 19, 2014 3:16 pm

Tex and Leah,

Yes I do believe I have a histamine problem. I am taking Claritin and Benadryl, daily - started at same time as Entocort. I don't really notice a dramatic difference, since Entocort kicked in quickly. But here is why I think I have a histamine issue after reading this forum and Tex's book.

- Before a particularly acute explosive D session or vomiting (or combo of both) I almost always have a very, very runny nose. I have never had allergies, and the nose only runs this much at these very bad times, and then I have all 3 orifices of my body "clearing" themselves all at the same time!!!

- I have read many histamine/and histamine producing food lists and am trying to figure some things out. As you know some say "fish", some don't mention "fish" and then everything in-between. There seems to be quite a difference in the lists. I find I am fine with Raw Oysters (obviously very fresh, since they were alive moments before served), and sometimes Sashimi from a restaurant famous for freshness. But I had Lobster in Boston (of course) at Legal SeaFood - supposedly also very fresh and alive moments ago - and left with a very runny nose and several episodes of WD (high volume). Hmmm??? Hard to figure out.

- Freshness in my leftovers has been a key. Now that I know, I'm careful to freeze my leftovers and toss what I can't eat (or give to dog). I have definitely found that proteins leftover cause me much more nose running, mucous in mouth and tongue, and generally bad WD. But, it varies. Sometimes, a protein can be fresh as I can know (from the store) cooked that night - and I still get a histamine response.

- I have avoided most (still learning) histamine producing and histamine containing fruits and veggies. Don't seem to have a problem with the 5 total veggies I can eat (peeled and cooked to mush). Proteins for now seem to be the issue.

Is there anything else I can do than individually test and try to be super-careful about freshness, take Claritin and Benadryl?

Anything a Dr. could help me with? Both my GI and my primary care do not seem to be familiar with Histamine and Mast cell degradation. They both nod, but then get back to another subject.

My diet is very limited. No fruits, 5 veggies, and most proteins except for Chicken (definitely sensitive to Chicken). I am GF/DF/SF and Egg free.

Leah - I was under the impression that Entrolab testing while I am on such high doses of Entocort would not be particularly helpful, as food sensitivities would be masked. I went so far as to get IG? (forget exact name) deficiency tested for, but then stopped, thinking the lab tests would just show I'm not sensitive to XYZ when really it is just the Entocort "toning down" the sensitivity reactions, meaning I'd have false comfort.

It certainly is true I might be sensitive to other proteins. I will try to pay closer attention. I don't eat any one protein more than a day at a time, due to histamines. So I'm usually cooking fresh, eating, freezing, and then go back to later that week or the next.

BTW, on SIBO - who knows, maybe that too. But odor is not an issue, and my WD is classic according to Tex's book other than this recent setback (except it is black due to Pepto).

Thanks all for input. Seeing Dr. Wed. so any help, particularly on histamines, would really be valued.

Post by **tex** » Mon May 19, 2014 3:36 pm

Chris,

Have you considered taking Histame (to supplement the diamine oxidase deficiency associated with MC)? Diamine oxidase (DAO) normally purges the body of left-over histamine, but IBDs cause a DAO deficiency, resulting in a build up of histamine in circulation.

Here's an ad for a product that's claimed to be a DAO supplement: I thought that Histame wasn't available in this country, so I have no idea whether this product will work or not.

http://www.iherb.com/Naturally-Vitamins ... ules/38748

Also, Gastrocrom (cromolyn sodium) can help to stabilize mast cells, and prevent them from degranulating (releasing histamine and other inflammatory agents). Gastrocrom requires a prescription though, I believe.

Tex

Post by **tex** » Mon May 19, 2014 3:54 pm

Chris,

I forgot to mention in my previous posts — yes, you're correct about the EnteroLab tests. If you have been taking Entocort for several months or more, the budesonide may mask some of your food sensitivities. It depends on how high your antibody levels were to begin with, but unless they were extremely high, several months of Entocort may suppress those levels enough to cause false negative test results (especially if you are also avoiding those foods in your current diet).

Tex

Chrisdat · Post by **Chrisdat** » Mon May 19, 2014 4:02 pm

Tex - just ordered Histame! Can't wait to give it a try. The reviews were great. Seems to really help people who have a histamine issue. I will ask Dr. about Gastrocrom., but am excited to have something to give a try, especially if I detect a runny nose, or coated tongue. That usually means "bad night ahead".

BTW, in my research on DAO I'm learning a lot of things. First, I was under the impression from Histamine listing charts that Red Wine and maybe White were certainly problematic. What I didn't know is that ALL Alchohol is DAO blocking:

"Alcohol is one of the most harmful products for people with DAO deficiency. It contains histamine, cadaverine and other amines, it releases endogenous histamine and has the property of blocking DAO, with the possibility of interfering in the metabolism of its own histamine and of the one found in ingested food. Ethanol intake causes DAO activity reduction, even in healthy people without genetic DAO deficiency and not only in people predisposed to low DAO levels."

http://www.deficitdao.org/alimentos-bloquedaores.php

And what puzzles me is, why does not everyone with MC have problems with histamines? Expecially in light of this quote:

"DAO is the most important enzyme that degrades histamine; but it is only located in some tissues; specifically in intestinal mucosa, kidneys, placenta, thymus and seminal vesicles. DAO also has little participation, not always, in the liver tissue. It is mainly located in intestinal epithelium, where it absorbs histamine (endogenous histamine too) and where DAO degrades it controlling the pass into portal blood. DAO located in liver controls the pass of histamine towards systemic circulation and when it is in the kidney, DAO degrades the reabsorbed histamine in the proximal tubule."

http://www.deficitdao.org/histamina-en- ... 3p9tF4v918

Certainly, having lymphocytes flood the mucosal lining (as I was told in my case), is damage to intestinal epithelium. That is why I am absorbing very little nutrition, and am suffering from multiple nutritional deficiencies. It also seems obvious, that DAO would not be able to do it's important work, if the intestinal epithelium is severly compromised.

Maybe this is old stuff to you. I may have even have read it from you (forgive my memory - steep learning curve), but this were both eyeopeners.

Thinking I could avoid wine, my husband and I have been enjoying the occasional Chopin (potato vodka) with club soda. Oh, and a bad histamine releasing lime:(

Guess those days are over. I'm O.K., but I think my husband is going to sad, he always thought, "well she can't eat, but maybe she can enjoy a drink."

Post by **tex** » Mon May 19, 2014 8:34 pm

And what puzzles me is, why does not everyone with MC have problems with histamines?

Not everyone has serious histamine issues because not everyone has enough small intestinal damage to cause a significant loss of DAO. The loss of enzyme production capacity is a time dependent process, and it also depends on the extent of inflammation present in the small intestine. The first enzyme to be lost is lactase. That's why everyone who has enteritis (intestinal inflammation) becomes lactose intolerant. Loss of the ability to produce lactase enzyme occurs so quickly that it even happens when we develop a case of the flu. With MC, as time goes on, and inflammation levels increase, we begin to lose the capacity to produce other enzymes. This is why we slowly begin to lose the ability to digest other sugars (carbs).

I have no idea where DAO falls into this hierarchy of lost enzyme production capacity, but there is a definite hierarchy involved, and DAO production is probably lost later, rather than early on. After the inflammation is suppressed, and healing begins, the ability to resume production of the various enzymes occurs in reverse order (IOW, the first one lost is the last one to be restored — namely, lactase).

As I mentioned in the book, the following quote from the reference you cited is apparently the reason why approximately half of pregnant women go into remission (IOW, for those particular individuals, excess histamine may be the primary reason for their GI symptoms, prior to their pregnancy). And of course, postpartum, blood levels of DAO again decline, allowing a relapse of symptoms.

In pregnant females, DAO activity is higher than in not pregnant, from 500 to 1000 times higher. Placenta produces additional DAO amounts as a fetus-protection measure, ensuring correct histamine degradation.

Yes, all sources of ingested alcohol tend to cause histamine problems for those of us who are vulnerable to histamine issues.

I hope the Histame works for you. Please keep us posted.

Tex

jgivens · Post by **jgivens** » Mon May 19, 2014 8:46 pm

Pepto worked for me. I did not have to take anything else and now wonder if I had known what my sensitivities were then, if I would have even needed to take that! I took it for less than two weeks--I think more like 10 days. One day the diarrhea stopped and constipation started and though I can have several BMs a day, they are all pretty constipated--over a year since I have had any serious D. I've had some Normans but they are few and far between. I hope the Pepto works for you, but it sounds like there are other issues with histamines going on, so you may have to try some other things.
Good luck! It is all trial and error because we are all so different.

Gabes-Apg · Post by **Gabes-Apg** » Mon May 19, 2014 10:18 pm

I cant offer info on pepto or entocort.
I do agree with Tex and Leah, there is something in your environment causing the reaction, and it is most likely to be histamine related.

something to investigate, histamine type reactions in MC world can also be triggered via events/activities such as having your hair dyed, having dental check up and clean, chemical or environmental impact (pollen, dust, chemicals in the air, cleaning the shower). For some, exercising can trigger major mast cell/histamine

Keeping a food/drink/symptom/activity journal can help identify likely causes.
The reaction you are having to the wine might be worse if there is a pollen reaction or other trigger occurring the same day

I am on the waiting list for the SIBO breath tests. The pathology lab has to have a dedicated RN allocated to me for the 3 hour test duration.
(only in the last 6 months did the Aus Govt make these tests subsidised)

I was taking H1 and H2 antihistamines on a regular basis (daily post the move) i have modified my supplement protocol and increased the magnesium, Vit C, Zinc intake, within 3 weeks, histamine symptoms abated, and i have not had to take any H1 and H2 antihistamines.