D Stopped but ongoing abdominal cramping

AntiLC · Post by **AntiLC** » Fri Mar 18, 2011 9:15 pm

I have had LC for going on 3 years. Just under a year ago, the D stopped (thankfully). However, to make a very long story short, I believe it was Zoloft that was the source of the LC. Now I'm trying to wean off the last med I'm on which is a benzo diazepim. It suppresses much of the Central Nervous system. As a result, the lower I go, the more my gut hurts. To make it more challenging, my doctor put me on depakote to ease the anxiety and depression that comes with benzo w/d. Sadly it also is infamous for exacerating digestive issues.

I discovered that taking an antihistimine (which also contain anticholinergics/antispasmotics) seems to calm my gut down. However, I've read here anticholinergics/antispasmotics can cause a whole host of other problems. The antihistimine however is not used primarily for that reason and only has a moderate amount of anticholinergics/antispasmotics properties.

So my question is, 1. Is it possible to have abdominal pain even without D? 2. Has anyone experienced chronic abdominal pain after the D stopped? 3. Are you aware of any meds that might be effective in dealing with this chronic pain?

Your input would be greatly appreciated! Thank you

Post by **tex** » Fri Mar 18, 2011 9:49 pm

Hi,

Welcome to the board. You might be right about the Zoloft, it is a known cause for MC.

AntiLC wrote:So my question is, 1. Is it possible to have abdominal pain even without D?

Yes. Some people with MC never have D, some have constipation only, and some have alternating D and C.

AntiLC wrote: 2. Has anyone experienced chronic abdominal pain after the D stopped?

Yes.

AntiLC wrote: 3. Are you aware of any meds that might be effective in dealing with this chronic pain?

Well, yes, but they're not generally safe for long-term use. The safest, most effective way to handle that is usually diet changes. All but a few of us are sensitive to gluten, most of us are also sensitive to all dairy products, and about half of us are sensitive to soy and all of it's legume relatives and it's derivatives.

If an antihistamine resolves your issues, that's a sign of mast cell involvement. In that case, you should be able to take a type 1 antihistamine, without adverse consequences. A drug known as Gastrocrom, (cromolyn sodium), works for some individuals with mast cell issues, but it doesn't work for everyone.

Again, welcome aboard, and please feel free to ask anything.

Tex

natythingycolbery · Post by **natythingycolbery** » Sat Mar 19, 2011 5:07 am

Welcome to the board,

Picking up on what Tex said, my dr thinks I got my LC from taking Zoloft last year, and there is apparently a link between SSRI's and getting MC.

AntiLC · Post by **AntiLC** » Sat Mar 19, 2011 6:32 am

I really appreciate the warm welcome! I was on the board 2 years ago and you all were fantastically supportive. I didn't type a lot of posts, and I forgot my user name, but you remain increadibly hospitible. Thank you.

Also, as I mentioned I had chronic D with LC for 2 years. I then made the assumption that when the D stopped a little over a year ago that the LC had gone into remission. Is it possible to still have abdominal cramping and headaches when eating, without the D and still be LC? Or could it simply be a whole other animal? Also, is mast cell involvement a component of LC? Meaning could LC have possibly triggered it?

Post by **tex** » Sat Mar 19, 2011 9:34 am

AntiLC wrote:Is it possible to still have abdominal cramping and headaches when eating, without the D and still be LC? Or could it simply be a whole other animal? Also, is mast cell involvement a component of LC? Meaning could LC have possibly triggered it?

We've learned that the syndrome of symptoms known as MC, (and all it's many satellite forms), is much more complex and far-reaching than the researchers who originally described it, ever visualized. IMO, yes, it's probably possible for MC to still be active, (without the D), because the disease has been documented to segue from one form to another, (for example, from LC to CC, or vice versa, and mast cell involvement is still so poorly understood, that it's pretty much of a wild card, as far as symptoms and responses are concerned.

Another possibility is that your MC is in remission, but your headaches and cramps are caused by a casein allergy/sensitivity, (or a wheat allergy/sensitivity, soy allergy/sensitivity, etc., or even a sensitivity to all of them). It's also possible that your headaches and cramps could be caused by mast cell degranulation, (since the symptoms are closely connected with the act of eating).

Technically, without D, (according to the original description of LC), your LC cannot be active, (in a classic sense), so this points to mast cell issues, or some other form of food sensitivity, as the cause of your symptoms.

You're most welcome. I'm sorry that your symptoms caused a need for you to return here, but I'm glad that you remembered that we're here, whenever you need us.

Tex

alclarkson · Post by **alclarkson** » Sun May 29, 2011 9:49 pm

When I took ammonium for 1 wk before starting the pep to routine, by D was gone, but my abdomen still cramped. This whole mast cell involvement has me scared. Would this have shown on my colonoscopy biopsies if I did have it?

Post by **tex** » Mon May 30, 2011 8:35 am

Adrea wrote:Would this have shown on my colonoscopy biopsies if I did have it?

Only if your GI requested the use of special stains that are used when analyzing slides for the diagnostic markers of mastocytic enterocolitis, (ME). A diagnosis of ME is made in cases where there are 20 or more mast cells per high power field in a biopsy sample taken from the mucosa of a patient's intestine. Mast cells are typically hidden behind other cells, or otherwise difficult to distinguish, so in order to make those cells more visible under the microscope, special stains are required. Until recently, those stains were either unavailable, or expensive, so they were not typically found in most hospital pathology labs. If properly stained, the tryptase enzyme in mast cells will absorb a immunohistochemical which will make them easy to visualize and count. Anyway, the point is, if the doctor doesn't request the use of those special stains, or otherwise inform the pathologist that ME is suspected, it is very unlikely that mast cells will be considered in the analysis.

Note that tissue from existing biopsy samples can be stained and reexamined, to check for mast cells, so you can have this done without having to go through another colonoscopy, (your doctor has to request this, though).

Also, be aware that an excess number of mast cells in the intestine, (the primary marker of ME), does not have to be present in order for a patient to have mast cell problems. Even normal amounts of mast cells can be problematic if they are prone to degranulate when they shouldn't. This can be caused by sensitivity to certain foods, (that are known to promote mast cell degranulation), and it can also be caused by eating foods that are high in histamine.

Based on our experience here, among the members of this board, ME is not nearly as common as mast cell issues due to inappropriate mast cell degranulation, and/or a sensitivity to foods that contain large amounts of histamine. Quite a few members here, whose symptoms seem to be refractive to treatment by normal diet changes, (avoiding gluten, casein, soy, etc.), find that avoiding foods that are known to trigger mast cell degranulation, and foods that are high in histamine content, often helps to bring remission.

Tex

alclarkson · Post by **alclarkson** » Tue May 31, 2011 7:13 pm

I wonder if there's a way to experiment w/ taking benadryl to help confirm mast cell issues?

Post by **tex** » Tue May 31, 2011 7:26 pm

Sure, Benadryl, (or one of the newer H1 antihistamines, such as Claritin, if you need a non-drowsy formulation), can be taken right before a meal, and if the symptoms don't develop, (or they're not as severe), then you are very likely on the right track.

Tex

alclarkson · Post by **alclarkson** » Tue May 31, 2011 9:45 pm

Tex you are so knowledgable on this stuff, it's like you've done this before or something.

Post by **tex** » Tue May 31, 2011 10:41 pm

I've learned a lot from everyone else, by hanging around here, and keeping my eyes open. Just about anything you can think of, someone here has tried, at one time or another, and posted about their results. This place is kind of like a cross between a research lab, and a medical library, except that only a few of us wear white coats.

Good luck with your program, and if you try an antihistamine, please let us know how it goes.

Tex

alclarkson · Post by **alclarkson** » Wed Jun 01, 2011 7:32 pm

Indeed, it is a cross of all those things.

Sheila · Post by **Sheila** » Tue Jun 07, 2011 1:15 pm

Boy, oh boy!! This post is so interesting. I went on a cruise, got bronchitis, took a Z pack, claritin and sudafed to control symptoms. When I got home I immediately went to visit my son and continued to take sudafed for the cough and drainage. I did take immodium on the day of the flight to Seattle as a precaution and the day I drove to visit my son. No Diarrhea the entire time!! I didn't see any correlation to this until just now. I stopped the sudafed and claritin a few days ago and for the past couple of days have had stomach discomfort, gas, fatigue etc. Not much of an appetite again. I have so much to learn about CC. I'm slowly reading my way through the posts and the more I read, the more confused I become. Thank you all for your posts, help etc.
Sheila