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I'm starting an experiment on myself today, and here's why:

Last year, I was in such bad shape with IBS-D that I had to take 2 months off of work. Because I didn't have any kind of official diagnosis, I ended up being released due to mental instability. I was extremely opposed to psych meds, but it was the only way to get time off of work. I was immediately put on Cymbalta by a primary care doc while waiting for an appointment with a psychiatrist. During this time, I went to a University hospital with the hope that they would be more research oriented toward my GI issues. Unfortunately--after driving 5 hours--the doctor walked in and said, "Well, Daniel, I've looked at all of your labs and tests over the last couple of years, and there's no other lab or test we can think of."

The time came for me to see the psychiatrist. He initially prescribed me Zyprexa and told me that he believed my IBS was induced by anxiety and the Zyprexa would help. He was pretty accurate. The Zyprexa helped tremendously for about a week, and it's fair to say that I went through a great amount of stress and anxiety about the time my symptoms appeared (divorce and long distance move). Normally, I'm not an anxious person though, so I don't think that anxiety continues to influence my symptoms.

After the Zyprexa failed, we added Elavil. Again--one great week.

So with this, I titrated off of the Zyprexa and Elavil and began Remeron. Remeron put me in remission for 4 full weeks. I couldn't believe it. I thought that I had finally found my treatment and went back to work. Unfortunately, it wasn't long before my symptoms returned. On the upside, they returned at only about 50% the severity.

After accepting this as good enough for a few months, I decided to stop the Remeron because I was constantly tired and lacked any emotion. I lost some friends, and never wanted to do anything. After stopping, my personality came back along with my uncomfortable symptoms. I found the Specific Carbohydrate Diet to be pretty helpful though, and I'd say that my symptoms today are about the same as they were at the end of my Remeron days.

The Research:

Still wanting to feel better, I've continued to do some research. At some point I came across someone using antihistamines with success. This made me think, "Wait a minute. Isn't that why Remeron made me sleepy?" Sure enough, Remeron has an antihistamine property. "Huh... I wonder about Zyprexa and Elavil." Yup. All of them.

So then I started to compare all three and exactly what they do. I knew that they were all Serotonin antagonists. For some reason, I kept looking over this though. I think I felt that serotonin should be left alone. That's when I learned about mast cells and asthma medication. There is plenty of information on mast cells and histamine, but something compelled me to look deeper. I googled "mast cells and serotonin." Sure enough, a link to dictionary.com described mast cells as cells that produce both histamine and serotonin.

The experiment:

Phase one: Antihistamine

I've already started. The goal is to see if antihistamines affect my symptoms at all. Currently, I'm taking 50 mg of Benadryl (H1 blocker) before each meal. This has provided some positive results, but nothing conclusive. I'm also adding in Zantac (H2 blocker) *note: Taking Benadryl has not made me drowsy at all. I assume this is due to a tolerance built up from the previous meds.

Phase two: Serotonin antagonist

After one week of taking Benadryl, I'm going to add in a serotonin antagonist. The most potent example I could find is Feverfew. At this point, I hope that the combination of an antihistamine with a serotonin antagonist will mimic the results of Remeron

Phase three: Backing off

After one week of the combination therapy, I'm going to back off. As history has taught me, I'm only going to build a tolerance to this again if it happens to work. My best option is to only use it on an as-needed basis.

Phase four: Antihistamine/Mast Cell Stabilizer

I'm not sure when I'll be able to take it to this phase, but I'd like to try a Mast Cell Stabilizer (which usually includes an antihistamine). Ideally, I'd like to try Ketotifen. I don't know if I'll be able to find it though. To my understanding, the oral form is only available in Europe. Another option is Gastrocrom, however, studies of it's effect on IBS aren't as significant as Ketotifen.

Last words:

I'll keep everyone posted on what happens. My biggest pet peeve is when people say that they've found the miracle treatment and have been in remission for...two days. I'll tell you if I'm doing well or not every so often, but I won't consider anything an effective treatment unless I go one year with minimal symptoms.

Also, I'm making the assumption that mast cell stabilizers are harder to build a tolerance to since they don't block serotonin reuptake causing the body to think it should counter and produce more. Instead, the production of mast cells remains the same, but some cells are neutralized.

We'll see...
 

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Discussion Starter · #2 ·
So I'm in Phase Two.

I swapped out the Benadryl with Zyrtec (generic Aller-Tec) and added in the Feverfew. It definitely made a difference.

Dets.:

The antihistamines (Benadryl/Zyrtec) seem to help form the stools. The serotonin antagonists (Feverfew) seem to help help the color. It's brown now instead of yellow, and I don't have nearly as much itching after a BM.

Side effects:

The Feverfew might be making me a little depressed. Super homesick right now.
 

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Discussion Starter · #3 ·
Now about the Mast Cell Stabilizer, Ketotifen.

Although Ketotifen in oral form is only available in Canada and Europe, some compounding pharmacies in the states are able to produce it. I found one near me that's referring me to a physician familiar with compounding pharmacies. I doubt this is going to be cheap, but I'll let everyone know.

You can find a compounding pharmacy near you at:

http://www.ecompoundingpharmacy.com/
 

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Interesting reads. I've found that sometimes cold medicines and/or allergy medicine helps my IBS-D, which sounds just like yours (loose, watery, yellow, itchy, etc).

I have used Cholestyramine with some success as well (helps the color and itchyness/burning for sure). My doc has NO problem RXing that for me since it's harmless in most other ways.

I've used only Claritin before, but now that Allegra is out, I may try that. Have you tried Allegra vs. the other antihistamines?

Right now my new doc has me also on generic prozac since he understands the fear and paralyzing condition this is as well as an endless cycle of fear that builds on itself, and is only getting worse the older I get.

I'm only taking 10mg a day and it seems to help with anxiety. Usually during IBS bouts I would get very depressed and worry more about it. Now it happens and I still get a little upset but I don't dwell on it nearly as long. I've been able to get out more for longer motorcycle rides and just tell myself "If you have an accident, you have an accident.. who cares".

Anyhow, just wondering if Allegra is something you've tried. Good luck to you!
 

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Discussion Starter · #6 ·
Hey legbuh,

Yeah. A lot of people don't get how stressful IBS really is. Keep hangin' in there. At this point, I'm just flat out honest with people and make everything kind of a joke. Ever heard of Ben Morrison? He's a pretty cool comedian with Crohn's. You can just tell that everyone treats him like a normal guy even though he's got the big D. He's just not embarrassed about it. You can't control (to an extent) what your body does.

I haven't tried Allegra yet. The Zyrtec did a really awesome job for me. I haven't taken it for two weeks and I'm still having noticeably better BMs. I know I have irritation in my ileum, so I wonder if the Zyrtec gave my body a chance to heal some of that... but that sounds a little too good to be true.

Did the cold medicine you tried have pseudoephedrine? Those kind of work like antihistamines too.

Also, about the Prozac... Does that work pretty well for you digestively? The way my psych explained it to me before, SSRIs (like Prozac) speed up motility (good for IBS-C) and tricyclics (Remeron, Elavil) slow down motility. But... tricyclics knock you out a little too. My friends thought I was bored all the time when I was on those.
 

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UPDATES??!?!?

I am soooo curious about the allergy aspect of what could be going on in the gut and have thought about testing out antihistamines. I have the other side of the IBS party but I know there are aspects that are shared.
 

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Discussion Starter · #8 ·
Hi! Sorry for the delayed response.

If you go to my blog, I go explain Ketotifen and allergies a lot more. Basically, I was trying going to give the Ketotifen a 2 month trial, but I stopped after about 1 month because it was giving me a lot of gas.

For about two weeks, I've been taking a Diamine Oxidase supplement 2x daily and liquid Benadryl for emergencies. I was surprised how well the diamine oxidase works. I just take two capsules a day and I feel like I'm 80% normal. I've read about other people taking diamine oxidase and having it wear off after three months. It's not cheap either. The two brands are Histame and DAOsin. It's about $1/pill.

Just to clarify: Zyrtec is the best remedy I've found to date. Within a week, I feel 100%. Whenever I'm taking a vacation I'll start taking Zyrtec daily a week prior to leaving and continue throughout the trip. Just to be safe, I stop taking it after. I emailed the Low Histamine Chef after I found out that she took Zyrtec for a while and she told me that she took it for about 4 years, but had to increase the dose to 3x/daily and had withdrawals when she came off of it.

Last thing (most important)-- I don't think it's really an allergy think if you're talking about Histamine Intolerance. I've been tested for allergies that people never knew existed and i have none. Histamine Intolerance is a lot like lactose intolerance: you aren't allergic to milk, you just lack the enzyme to really digest it (lactase). Histamine intolerance can mean that you either produce or consume too much histamine, or you lack the enzyme Diamine Oxidase to break it down.

Anyway, I hope that helps. I try to give as much info as possible.
 

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I'm so glad you are not giving up and just accepting this as life. I've been dealing with the big D for 30 years and have gone through cycles where I put tons of energy into research and fighting for relief --- but sometimes it wears me down and I give up for a while.

I had also considered the allergy/histamine angle and do believe it's connected somehow to my GI trouble. I really appreciate you sharing your experiment and findings. I'm going to follow your guidelines and see if it will give me any relief.

Thank you for posting!!
 

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FYI:

Zantac gives me terrible D for 3-4 days with just one dose, it's a listed side-effect. You might try stopping that as well.
 

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Discussion Starter · #12 ·
Thanks PD85. I only tried the Zantac for a week or two and it didn't seem to be worthwhile. It's just odd that an H2 antihistamine does nothing for what should be an H2 histamine problem (in the gut). I'm sure it's great for it's actual purpose though. Never really had heartburn.
 

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Hi Decibel, your blog is very informative and mirrors my similar experience. I also found, by accident, that zyrtec helped my symptoms (very long story). Could you give an update on how your experiment has gone and what you are currently doing to manage your symptoms?
 

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Discussion Starter · #14 ·
Pretty simple now. Benadryl for emergencies. Vitamin D for baseline. Zyrtec on vacations and getaways only. :)
 
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