Ideas to make the D stop?

robinc2525 · Post by **robinc2525** » Thu May 01, 2014 3:22 pm

I was diagnosed with MC last April, was very strict with my diet and was on Uceris from about June to November. I never had total relief during this time and suspected it was diet that gave me the small improvements that I did see. I was normally having 1-3 urgent loose bms in the morning and then I was okay the rest of the day. After going off Uceris there was no change.

I did the Enterolab test and the only thing that was elevated was gluten (23 units)

Suddenly the day after Christmas I started having Normans! I ate some ginger cookies (gf/df) on Christmas and totally thought I was in for it and to my surprise the next day I had a normal bm. It continued day after day for months with minor fluctuations that I seemed to be able to correct pretty easily. During this time I was on no medication/supplements at all except my Vit D drops. I ate a wider variety of things, I never ate gluten, raw veggies, avoided dairy 99% of the time. I never ate out and compared to the average person I still ate what would be considered a strict diet but for someone who survived on 5 food for most of last year I was quite happy!

Then all of a sudden everything went downhill again. I would say it started in early April...I started hearing noises, bms got looser, thinner, felt more gassy. I adjusted my diet, took out the decaf I had been drinking, no herbal tea, no seltzer water, back to just meat and veggies. But it didn't help. The day after Easter the D started again and has not gone away despite sticking to my few safe foods. I have wondered if mast cells were an issue. I have been taking an Allegra or Claritin Reditab each day and it does not seem to make a difference. I also tried Zantac (no difference). My mornings are horrible and I can manage the rest of the day but have to be very careful about how much water I drink because it seems if I drink too much it ends with a mad dash to the bathroom for WD. I am so thirsty!

I have some Apriso that I could take but obviously I would rather not have to resort to that and have no idea if it would work anyway. I tried Lialda before Uceris and it worked for a week and then stopped working, and as I understand it Apriso is similar to Lialda. I don't know what to do to get the D to subside. Immodium does help but doesn't solve whatever is causing this. Is it possible that I am not taking enough antihistamine? How much do people take at once safely? I will add that in the past couple months I noticed that my face and back would itch for no apparent reason. Not terribly itchy or anything just a nuisance once in a while and I thought it unusual. This came to mind when I was reading some old posts and wondered if this was a clue that mast cells are involved.

I'm feeling more and more depressed....I thought I understood how this worked and as long as I stayed away from my "trigger" foods I would be okay. I know stress can be a factor so I meditate and most days of the week get a walk in which I find relaxes me. Any ideas/suggestions would be appreciated.

Thank you :)
Robin

Post by **tex** » Thu May 01, 2014 5:02 pm

Hi Robin,

Well, obviously something is seriously wrong, but tracking down the source of the problem may take some serious detective work.

I was going to suggest an H2 antihistamine, but if you've already tried Zantac, with no noticeable improvement, then you've already explored that option.

Your mention of itching suggests that mast cell activity may indeed be at least part of the problem. As far as dosages are concerned, immunologists prescribe up to 4 times the labeled dosage for most antihistamines when treating chronic urticaria, so I would consider that to be the practical limit. That's not saying that more can't be used, but if 4x won't bring any sign of significant improvement, then more is probably not going to help, either. And doses in the range of about 10 times the labeled dose are generally considered to be toxic, so that should definitely be avoided.

Quite a few members here seem to have success with a non-drowsy antihistamine in the morning, and Benedryl at bedtime, but there is no one-size-fits-all treatment.

It's likely that a food (or a supplement, or a medication, or whatever) that you are using regularly may be the problem. It could even be something such as a contraceptive, or HRT. Hopefully we can all put our heads together and come up with some ideas that will help to zero in on the problem.

Tex

dfpowell · Post by **dfpowell** » Thu May 01, 2014 5:05 pm

Only thought I have is, are you avoiding high histamine food?

Kari · Post by **Kari** » Thu May 01, 2014 5:24 pm

Hi Robin,

It does sound like you're dealing with mast cell issues, as am I. OTC antihistamines don't work for me either, so I'm trying to control the symptoms through diet. Besides being very careful to eat low histamine foods, I have found bone broth to help. I've been slow cooking beef bones for 48 hours, and using the broth for soups, as well as drinking some as it is - it is very soothing, and seems to calm things down. Other than that, I would eat only very soft foods for a while to see if it helps.

Hope you start to see progress soon.

Love,
Kari

robinc2525 · Post by **robinc2525** » Thu May 01, 2014 5:36 pm

Hi Tex, thanks for your reply. I am not taking any hormones for any reason and I quit all supplements other than the vitamin D drops last December. I tried Zantac last week for 3 days. I took 1 dose (150mg) per day. It didn't seem to do anything so I decided to try Allegra/Claritin again. I have been taking one of those each day. Maybe I will double the dosage and see what happens.

Hi Donna, right now I am back to eating ground turkey, chicken, rice and broccoli. I cook with olive oil and salt and pepper. I have had some organic unsweetened applesauce here and there.

I am also looking into the Pepto treatment....I have never tried it. As I understand it's 8 tablets a day for 8 weeks? I was just reading Dr. Fine's information about it. I am a little worried about tinnitus (my mom has it) or other side effects.

robinc2525 · Post by **robinc2525** » Thu May 01, 2014 5:42 pm

Kari- I was thinking about doing bone broth, and then I read that it is high in histamines. You find that not to be true? I don't eat red meat but I could try it with chicken. Thank you :)

Kari · Post by **Kari** » Thu May 01, 2014 6:45 pm

Robin,

I only started with the bone broth less than a week ago. Did not realize it is high in histamines :(. Perhaps since I'm eating an otherwise low histamine diet, it has been helping me - this is such a juggling act!!!

Anyhow, while I was eating chicken, I used to boil it whole w/onions and garlic. When done, I would remove the skin, bone and grizzle, and place the meat back into the strained broth. I would have some of it fresh, and then freeze the rest in meal portions. It never occurred to me that this might be high in histamines, but back then I wasn't paying that much attention to them. Home made chicken soup has always been touted as a cure all.

I'm so glad you brought this to my attention - I'll be a lot more careful about how much bone broth I use.

Love,
Kari

alcyone · Post by **alcyone** » Thu May 01, 2014 9:07 pm

Hi, Robin!

Just to back up what Tex said about higher antihistamine dosages, I use Pepcid for my mastocytic colitis. A regular strength Pepcid is 10mg, extra strength is 20mg. When I first got sick 7 years ago my doctor put me on 40mg a day (20mg morning and night), but when that didn't help he bumped me up to 80mg daily and I finally started seeing a big difference. When I flared again this past October I chose to go with the 40mg a day regimen, but added 500mg of Ester-C to help calm the mast cells down, and that combo has worked well for me this time around.

Hope you get some relief soon!
Erin

Heady · Post by **Heady** » Thu May 01, 2014 11:50 pm

I tried taking liquid pepto bismol periodically when needed as suggested by my GI but found it made my tinnitus worse so discontinued it. I find broccoli too gassy.

JFR · Post by **JFR** » Fri May 02, 2014 6:39 am

I have some bone broth every day without problem. My problems with high histamine have greatly diminished from what they were 2 years ago but I don't know if bone broth ever bothered me. When things were at there worst just eating anything seemed to be problematic. There just is no one size fits all diet, which sure would make things a lot simpler.

Jean

Kari · Post by **Kari** » Fri May 02, 2014 8:34 am

Jean,

Do you freeze the broth immediately after you make it? I have read that it is good for 5 days in the refrigerator, but I assume the histamine content goes up. I was wondering how to freeze individual portions, but just remembered that someone suggested freezing the broth in ice cube trays:).

Love,
Kari

JFR · Post by **JFR** » Fri May 02, 2014 8:47 am

Kari,

I can keep it in the refrigerator for 5 days. Anything beyond that I freeze in mason jars. I just happen to have a lot of mason jars. I put 1-1.5 cups in each mason jar. I make about 2 weeks worth at a time in a large crock pot and whatever the histamine content it doesn't seem to bother me.

Jean

Heady · Post by **Heady** » Fri May 02, 2014 9:27 am

I boiled the turkey carcas 12hrs with celery,carrot & onion. Next day I made the soup and froze it right away in corningware containers. I am not eating anything that has been in the fridge more than 24hrs.

Post by **tex** » Fri May 02, 2014 10:42 am

I freeze a lot of individual portions in zip-up type quart-size plastic freezer bags. So far, the chemicals leeching from the plastic haven't caused me to grow any extra toes, or anything, but I realize that some people aren't comfortable with plastic bags. Microwaving obviously imposes significantly more risks than freezing, when using those bags.

Tex

jgivens · Post by **jgivens** » Fri May 02, 2014 12:19 pm

I have been pretty particular about what I freeze the broth in. I don't think (unless you heat the bag instead of letting it thaw naturally) that using zip lock bags are a problem. You could also freeze small amounts in larger glass jars.

I use bone broth a lot and I like the recipe from Nourished Kitchen (nourishedkitchen.com) for most bone broths. It really is healing and though my friends (not MC sufferers) make fun of me and ask me if I have cooked up any "gruel" lately, it has saved my life!

As far as Pepto Bismol is concerned, my GI specialist told me to take it for a week (8 a day) and was alarmed when I had taken it for 10 days that way. He was very afraid of toxicity. You can only imagine what he said when I told him about the 8 week treatment. Since doing the 10-day Pepto treatment in January of 2013, I have not had WD since. In fact, I have been mostly constipated in spite of having 2-3 bowel movements a day.