Trying to figure this out...

[Courtney]

This morning I had 2 (not one, two!) major D accidents less than 3 hours apart, and I'm trying to figure out what caused them. After already having major D at around 11:00pm last night, I woke up with it at 5:30 am, and didn't quite make it to the toilet. Fortunately, I've become very efficient with these things, and I was able to be back in bed by 6:00am. I planned to get up at 7:30, but I didn't go back to sleep until 7:00ish, and I just physically could not get up--wish I had, bc at 8:00 I had to make another mad dash to the bathroom, and again, did not quite make it. The sheer volume of D never fails to amaze me. I am not a very large person, and I kind of wonder where I keep it .

I've continued to have grumblings from my tummy all morning, although no more D. I actually had improved some in the Major Accident department, although I've still had my share of small ones. I don't know if that was a result of me getting some better or just getting better at anticipating.

I have been trying, after 5 years of no meat except fish and shellfish, to add meat back to my diet slowly, so I can get enough protein and bc I think I might need to try the paleo diet. But I don't really like meat, so I have to disguise it, like some parents stuff vegetables in the mac and cheese. For dinner last night I had mashed potatoes, made of potato and a little bit of broth (yeah, they were gluey, but I didn't want to add anything to them, and I like them gluey), and some ground bison meat that I mixed into it. This bison is organic, grass-fed, from a local farm, etc...IOW, no injections or anything. I found the purest meat I could, and I thought bison might be a good choice since it is probably closer to a paleo meat than anything else I could get and is very low fat. And I only had a tiny piece (about 3 oz.). Still, I have seen some members here say that beef is a problem for them, and it occurs to me that cows and bison are probably pretty closely related. I had a piece of bison sausage a few weeks ago, and it did not give me any obvious problems. I also had a mushroom gravy with this, that I made by pureeing mushrooms (sounds gross, but is actually pretty good).

The only other thing I had that was different from usual was a tiny piece of my birthday brownies, which I made from a Trader Joe's GF mix. There was nothing in them that I don't regularly eat, either, and I used applesauce instead of oil, so they were pretty low fat.

Thoughts, anyone?

Love,

Courtney

[Courtney]

Oh, I forgot to mention, that for the past two months or so, I've occasionally had pain in my throat...almost like someone is squeezing it. This morning at 5:30, I felt that worse than usual, so I tend to think the two are related.

[tex]

Hmmmmmm. Sorry to hear about the problems, but I believe that "accidents" do tend to run in "packs". I recall that when I was reacting, on the days when I would have an accident, it was a pretty safe bet that I would have another or three, before the day was out. Usually, though, I was better at anticipating the later ones, and was able to react at almost warp speed, since I knew that my gut wasn't bluffing. Of course, that doesn't always work, because sometimes it seems that no matter how much faster we move, the D moves even faster.

Anyway, I am one who had symptoms from beef, but never D, to my knowledge. I'm not sure if anyone else actually experienced D as a result of eating beef, either, though one or two others have mentioned that beef seemed to bother them. Actually, the meat of bison, (Bison bison), is quite different from the meat of domestic cattle, (Bos taurus), though research does show that approximately 40 % of the bison herds in this country contain DNA from domestic cattle, and overall, approximately 5 % of individual bison tested, have been shown to possess DNA from domestic cattle, (not that any of that is relevant to the case at hand). At any rate, I would suspect something other than the meat, and my thoughts keep coming back to the mushrooms. Have you eaten them before, in a situation where you were able to objectively evaluate their "safety"? Also, when my gut was sensitized, I found that I reacted adversely to virtually all commercial mixes, even though they wouldn't necessarily always bother me when I was in remission. I have no idea why that occurred, and goodness knows, I tried to find mixes that would work, but I was never able to successfully do that. Therefore, in my mind, the brownie mix, (even though that one may well be one of the safest on the market), is a prime suspect.

For something like that to happen, though, as a result of an attempt to enjoy a "safe" birthday treat, is, IMO, a very cruel stroke of fate. MC is, without question, a very cruel disease, that does everything it can, to destroy our dignity, and our enjoyment of life. Because of that, we have to constantly be on our toes, in order to ward off the Draconian forms of torture that it does it's damnedest to inflict upon us.

I hope the worst of this passes quickly.

Love,
Tex

[tex]

The throat pain issue is a real toughie. It could possibly be due to a spasm of the cricopharyngeus muscle, which sits just below your Adam's apple, inside your throat, except that the timing doesn't seem to fit. Also, that's not a common problem, so not many doctors are likely to know much about it. I doubt that anyone really knows what causes the condition, either. Supposedly, it goes away on its own after a few weeks, or months. You can read an article about it here:

http://www.voicedoctor.net/therapy/cps.html

From your description, it sounds to me as though it might possibly be due to a form of anaphylaxis, (especially since it seems to be sporadic, or at least varies in intensity). Are you ingesting or breathing anything that you might be allergic to, such as a med, (or a painkiller)? Do you have a new pet in the house, or a new type of bedding?

If it doesn't affect your breathing, though, it may be due to something else. The thyroid gland immediately comes to mind, but it would need to either be physically swollen, for that to happen, or a rare condition, such as Reidel's Thyroiditis, would need to be present.

Reidel's Thyroiditis

The fourth type of thyroiditis is called Riedel's invasive fibrous thyroiditis. This is a very rare form of thyroiditis in which the inflammation of the thyroid gland causes it to merge with surrounding structures such as muscle and trachea (windpipe). In fact, many physicians think that this disease is not a form of thyroiditis at all, but rather a rare form of low-grade tumor that happens to involve the fascia (or envelope) of tissue that surrounds the thyroid gland.

The thyroid gland itself becomes quite hard, like a rock and it may be very difficult to tell if this rock-hard thyroid is a result of inflammation or cancer. Blood tests for thyroid function are usually normal except in the extreme cases where the inflammation is so invasive that the thyroid can no longer function properly. In this situation, you may become hypothyroid. A biopsy is necessary in order to distinguish this benign disease from cancer. However, since the thyroid gland in this illness is so hard, a fine needle aspiration biopsy may not be possible. Instead, a biopsy done in the operating room may be necessary.

In the most severe forms of this disease, the thyroid gland becomes so tight and solid that it may squeeze the trachea or breathing tube. In this instance, an operation may be necessary to remove the middle portion of the thyroid and remove this constricting ring. A complete removal of the thyroid gland can not be performed because the thyroid blends with normal muscles and other tissues, making more extensive surgery quite dangerous. Once this little middle portion of the thyroid is removed, the windpipe is no longer constricted and breathing is facilitated.

That seems highly unlikely, in your case, since it would appear likely that this condition would tend to cause symptoms 24x7. That quote is from:

http://www.cumc.columbia.edu/dept/thyro ... ditis.html

IOW, I really don't have the foggiest idea what could be causing it.

Love,
Tex

[JLH]

Any form of soy in the brownie mix? Actually, I can't tolerate even the Enjoy Life Chocolate Chips except in minute amounts.

I just ate one of the K (hard to spell) chocolate frosted doughnuts because they were out of vanilla. I sure hope I don't regret it.

I was in town at the dentist and stopped by the HF store to get lunch. The rice snaps I had brought with me just didn't suffice.

[tex]

Joan,

If you're referring to the Kinnikinnick donuts, as I recall, the ingredient lists are identical for those two donut flavors, (except for the chocolate, of course). Soy has been removed, in the current version.

Tex

[tex]

Courtney,

Regarding the volume of D that you mentioned, there are several types of D, the most common of which is osmotic. The type of D that makes MC so "spectacular" is known as secretory D, and it's the type of D that we experience when we are having a "full-blown" reaction. This type of D is rather unique to the IBDs, and it results from the colon actually reversing it's normal role of removing moisture from the lumen.

IOW, with secretory D, water is secreted into the lumen, rather than it being removed. That's one of the reasons why dehydration can occur so quickly, during an MC reaction. The process is sort of like flushing a toilet, in slow motion. I'm not sure that any explanation has been documented, as to why this occurs, but I would suggest that it is an attempt by the body to enhance the purging of the intestines, in order to more effectively remove the "apparent" toxicant contained within the fecal stream.

Evidence, (though certainly not proof), that the fecal stream of MC patients does indeed carry a toxic agent, is demonstrated by the fact that if a Hartmann procedure is performed on an MC patient, (surgical resection), complete clinical and histopathologic remission will occur in the disconnected portion of the colon. Upon reversal of the procedure, (surgical reconnection of the colon), the symptoms will recur.

http://www.ncbi.nlm.nih.gov/pubmed/7615 ... t=Abstract

Because of this, there is reason to question the wisdom of the use of medications that slow down motility, by reducing the peristaltic pumping action, etc., since this might effectively result in increasing the inflammation, and prolonging the reaction. IOW, there's almost always a good reason why D occurs, in the first place, and trying to control it, without removing the cause, may be contraindicated, for the health of the organs involved.

Anyway, that's why the volume of D during an MC reaction can be so remarkably large.

Tex

[Polly]

Hiya Courtney!

Chocolate is one of my intolerances, even if it contains no milk or soy lecithin. Hope that's not the case with you.

Perhaps the timing was such that you reacted to something earlier in the day. It takes me 16-18 hours to react to gluten. Or, by any chance did you use toothpaste or mouthwash before bed that contained allergens? Many of us don't tolerate the sugar substitutes, especially the alcohol sugars like sorbitol. One of our members here reacted to a soap containing one of her intolerances that her husband had used prior to lovemaking. (She "licked" the soap off and later got sick).

Like you I was meatless, too, before the MC hit (12 years). I suspect that the fact that I ate a lot of whole grains and dairy during that time may have precipitated the MC. (Maybe I "wore out" my lifetime ability to digest them too early???).

Good luck figuring it out. Often we never know, but I would guess that you ingested some offending food.

Love,

Polly

[Gloria]

Hi Courtney,
My DD made brownies from Trader Joe's GF mix thinking that since they were GF, they'd be OK for me. As I recall, the mix was GF, but included a bean flour, which I cannot eat because beans are legumes. Many GF flour mixes are made with bean flours. This is just an observation and you would be the best judge of whether beans or legumes bother you. It's not a huge jump from being intolerant to soy to being intolerant to legumes, since soy beans are legumes.

Gloria

[jleslie]

courtney, sorry to hear about your bad reaction and accidents. i have frequent accidents and rarely know what causes them. on the throat issue. could it be an allergic reaction. don't some people with peanut allergies have their throat close up on them sometimes?

[Courtney]

Tex, once again you are a world of information about this disease and everything related to it. It's like you can google your own brain and come up with something! Your knowledge never ceases to amaze!

I had leftovers, so I decided to try again and eat the mashed potatoes and bison w/out the mushroom gravy, to see if that is causing a problem. (I do know for a fact that I never digest whole mushrooms, but I'm not sure if that's a fiber issue or bc I can't tolerate them. I thought pureed might work ). So I ate the chocolate brownies again, and again, had bloating/pain/gas/and bad D at 11:00pm, just like the night before. (I ate at the same time.) I got up at 6:30 this morning w/ just normal morning D, like every morning, so it was nowhere near as bad as yesterday morning. Could have been the chocolate and mushroom combination that made it so bad the day before, I guess.

Actually, funny you should all mention chocolate. Chocolate and I have a history. When I was little, my mom would have bad allergic reactions to chocolate--she broke out in a blistery rash all across her chest. I remember her crying with it and having to keep wet cloths on it. A few years ago, a coworker convinced her to try it again, and ever since she's been fine with chocolate. When I was 13, I had a couple of major migraines, and since my mom had a problem w/chocolate, we figured that might be the culprit. I cut out chocolate and never had another headache. Then when Mom added it back, I figured I would try it, too, and it seemed to be fine. Hmmm....

The chocolate listed on the label was Dutch Cocoa, which I figured was in a powdered form, and soy wasn't listed among the allergens, so I don't know if it had soy or not. Flours were white rice and arrowroot (which is a seed, right?) Anybody have problems with that?

I had considered an anaphalactic (sp?) reaction w/ the throat thing, but it has never threatened my breathing, and I thought those reactions tended to be pretty serious. This is just a squeezing pressure/pain. Weird.

Well, thanks for your thoughts. I'll continue to try to figure out my intolerances.

Love,

Courtney

[tex]

Courtney,

Thanks for the kind words. Actually, my brain is so cluttered and disorganized that "googling" would probably be the only way to find most of the junk stored there.

Arrowroot powder is made from rhizomes of the arrowroot plant. Rhizomes are actually stems, (they have visible nodes, like normal stems), but they grow underground, similar to roots, and they also produce roots that go down, and shoots that emerge above ground, at intervals along their length. This provides another means by which the plant can propagate. It's a paleo food, and as far as I'm aware, no one here has reported reacting to it.

I located the Dutch Cocoa website, which is pretty limited on details, and it doesn't display any information about ingredients, so I sent an e-mail asking whether their products contain any soya or any other allergens. We'll see if anyone there can interpret English, because I certainly don't know enough Dutch to ask an intelligent question. I would assume that the cocoa powder should be pure, however.

Regarding your earlier symptoms from chocolate: My physical responses to allergens have changed several times, over my lifetime. When I was a kid, I had asthma, and one night when I was in my early pre-teens, an attack became so serious, that my parents called the local doc, (back before the extinction of the last of the dinosaurs, doctors still made house calls, and they actually seemed to care whether you lived or died. ). Anyway, when he arrived, I was beginning to turn blue, so he saved me with a cortisone shot. Asthma slowly became less of a problem, and somewhere in my early 20s, it changed into hay fever. Somewhere along in my 50s, the hay fever disappeared, and my GI symptoms began. Hmmmmm. Anyway, after I adopted "the diet", and my gut slowly healed, my hay fever symptoms have slowly returned.

For several years, though, when my GI symptoms were raging, I never had any of the classic respiratory symptoms of either asthma or hay fever. I guess my immune system had all it could handle already, and it had to just ignore the pollen and other nasal irritants. IOW, enteritis trumps hay fever. Now that my immune system has more time on it's hands, so to speak, the hay fever is back in full force. I find that fact, and the sequence of events leading up to it, to be very interesting, and probably very enlightening, if I just knew how to utilize that information.

Love,
Tex

[Courtney]

Wow, Tex! You are so thorough! I didn't even know Dutch cocoa had a website--thought it was just an ingredient. Thank you so much for going to so much effort for me.

Very interesting about your allergies, too. My brother had terrible athsma and seasonal allergies as a kid, but I never had the first sniffle, and now I can't stop sneezing and sniffling all year round. That started when I moved up north, though, so I tend to think I was just exposed to new allergens.

Love,

Courtney

[Bifcus16]

Hi Tex,

I was intrigued by your pondering that your hayfever is inversely related to your GI status.

I have a primary immune deficiency as well as LC. My hayfever symptoms stopped about the time the LC went overenthusiastic and I gave up dairy. I had assumed the lack of dairy was causing the lack of hayfever, until the immunologist assured me I just don't have enough antibodies to react to normal airborn irritants. The last month or so the gut has been having a (relatively, mostly!) good patch, and I have been getting a bit of a runny nose. Now you make me wonder if the timing is related.

Since IgA is secreted in the parts of the body that come into contact with the outside world (gut, respiratory, genital etc), it makes sense that if it is concentrating on fighting in one area, it may not have enough spare soldiers to fight a battle on a second front. The complication, of course, is that since I don't have enough T cells they struggle to get the message out to the rest of the soldiers that there is a fight on anywhere!

I'll have to think through that connection a bit more.

Cheers,
Lyn

[JLH]

Lyn, we're so glad you found us. We have another Austraiian in our online family.