Question..

[Trace]

I know many of you have fibromyalgia symptoms with your MC....I was dx with both within 6 mos of each other. I thought my fibro was just symptomatic of the MC b/c I seen some people with fibro who are almost crippled up. I just hurt, have headaches, and sleep. (All symptoms shared with allergies!) I was also dx with myofascia pain complex..which I thought was a progression of the fibro.

And, sorry to be so long, but here's the question...In your opinion/experience, is fibromyalgia really a "disease" unto itself? Or is it the result of another underlying disorder? My rheumy tells me it is a stand-alone, but in my particular case, I think it's the result of the food sensitivities, which lead to the MC and the inflammation that MC causes to my system. I'd like to think that if I get my MC under control, the fibro and myofascial thing will be gone. What's your opinion/experience?

See what happens when I'm forced to stay on the couch? I think too much!

[tex]

Hi Trace,

Bearing in mind that we're all different in the severity of our symptoms, and not all of us experience the same symptoms, I have to agree with you. At one time, if I had "pursued" this issue, I have no doubt that I could have been diagnosed with fibromyalgia, and probably several other autoimmune issues with similar symptoms, because I certainly had the symptoms, (or enough of them), to justify a diagnosis. Those symptoms all disappeared after I had been on the GF diet for a time long enough to begin healing.

As far as your question of whether or not it is a stand-alone disease is concerned. Hmmmmmmmm. Well, I guess it is, technically, since the medical "experts" have defined it as such. However, I'm not at all sure that it should be, since it does indeed seem to ride on the coattails of other autoimmune "diseases", and it's symptoms seem to disappear when the concurrent autoimmune disease, or diseases, are adequately controlled. Here is another reason why I'm not convinced that it's a bona-fide disease:

A definite diagnosis of fibromyalgia syndrome should only be made when no other medical disease can explain the symptoms. This is to say, fibromyalgia is a diagnosis of exclusion.

A "definite" diagnosis of fibromyalgia? Isn't that an oxymoron, or something equally obnoxious? How can it be "definite", when the diagnosis hinges on the "exclusion" of other diseases? What if someone discovers another disease tomorrow that might be a candidate? By default, using these criteria, a definite diagnosis of fibromyalgia cannot possibly exist.

That quote comes from this site:

http://www.fibromyalgia-symptoms.org/fi ... nosis.html

The most convincing argument against it's candidacy as a stand-alone disease, however, lies in the fact that, unless I'm overlooking something substantial, fibromyalgia, along with virtually all other autoimmune "diseases", can only occur in the presence of the leaky gut syndrome. IOW, if a patient diligently, and "successfully" follows a program that prevents the leaky gut syndrome from occurring, the autoimmune issues will subside, and the symptoms will not return. Unless, of course the patient delays treatment to the point where the triggers that are causing the leaky gut syndrome are able to accrue massive permanent damage to various body organs.

Basically, the same things that can cause MC, can cause firbromyalgia, and removing those "triggers" from our diet, will typically preempt the symptoms. These include, but are not limited to, gluten, and various other food intolerances; NSAIDs, and various other meds, (such as proton pump inhibitors, for example); stress; and while I don't recall ever seeing it mentioned with reference to fibromyalgia, I'll bet that cessation of a smoking habit can trigger fibro, since it has been documented to trigger MC. Additionally, the leaky gut syndrome can be caused by excessive use of sugars, alcohol, and probably a few other food items to which we are not necessarily intolerant of, in the classic sense, but to which we become temporarily intolerant of, by default, due to our response to the leaky gut syndrome.

Unless you've already seen it, you might be interested in some of the information on this site:

http://searchwarp.com/swa5173.htm

Good thinking - this is a great topic, and I definitely agree with you.

Tex

P S FWIW, some of us are not even convinced that MC is a valid, stand-alone disease, due to the fact that it can present in so many different, (yet similar), forms, and especially due to the fact that it appears to be a response to digestive system issues linked to the leaky gut syndrome. IOW, some of us consider MC to be a collection of symptoms, caused by certain digestive system issues, rather than a unique disease, itself, very similar to your suggestion concerning fibromyalgia.

[MaggieRedwings]

HI Tex,

Based on what you said above about a smoking cessation possibly triggering MC. I have a real question and truly want your opinion. Since I was doing much better for a period of time on Entocort and then got the dizzy spells, etc. and have cut back severely to 3 mg. every 2-3 days I have been much worse on the loo trips and defnitely never saw Norman since cutback. Finally the qustion! Since almost simultaneously with the cutback I backed off my cigar smoking big time - only a.m. and p.m. cigars and never at work. Do you think this might have anything to do with my sliding backwards? I am just trying to get some kind of handle on why I am so diligent with diet and everything else and seem to never be up to speed like everyone else on healing.

Love, Maggie

[tex]

Hi Maggie,

That's a tough question, and we're in uncharted waters here, but I would suspect that while cutting down on smoking might possibly have increased the symptoms slightly, it's difficult to say that it made a big difference, if you haven't stopped completely. Terminating a long-term smoking habit imposes a double whammy, since the body not only has to deal with nicotine withdrawal, (which causes a lot of stress), but it also has to deal with the loss of the protective effects of nicotine, and together, these effects can be very powerful. The 64 dollar question, I suppose, is how much nicotine you are still receiving, and how much effect it has in the brain, (IOW, how sensitive are you to it).

More research needs to be done on the protective effects of nicotine, because it's still a little understood area, and it's an unpopular topic, due to the government's campaign to eradicate smoking. There is no question, for example, that nicotine helps to prevent neurodegenerative diseases like Parkinson's and Alzheimer's disease, and there is evidence that nicotine possesses an anti-inflammatory effect in the brain, which may protect against nerve cell death.

One of the steps leading up to nerve cell death, is chronic microglial activation, which is a sign of brain inflammation. In laboratory experiments, researchers have demonstrated that nicotine inhibits activation of brain immune cells known as microglia, and this has been proposed as the mechanism, (or one of the mechanisms), by which nicotine conveys neuro protective benefits to the brain.

Here's a reference on that:

http://www.sciencedaily.com/releases/20 ... 070922.htm

What this implies, is that nicotine offers some degree of protection against brain cell inflammation. This is strictly conjecture on my part, of course, but it's not a huge stretch of the imagination to suggest that suppression of immune cells in the brain, (which has the effect of reducing inflammation in the brain), might very well be extended to other parts of the body, at least for certain individuals who might possibly show an increased response to nicotine.

Bear in mind that I'm just thinking out loud, here, and I'm not aware of any research that might verify, or disprove this theory.

Love,
Tex

[Matthew]

Maggie

Believe it or not I have long followed your heroic efforts. My heart goes out to you in that my efforts got a few results , no matter how illusive at times, and you are still looking for them.

Since I have had to deal with tobacco addiction on and of for all these years I wonder if we are battling the same thing.

Tobacco is a Nightshade. I seem to remember that the two of us with a few others really do best avoiding night shades.

Being the idiot that I am I could avoid tomatoes , potatoes, eggplants and peppers but all be dammed if I wouldn’t quit sucking on a cigar even just once a day. For a long, long time even if I never lit up.

They are history now but just wonder. Just wonder if it was part of why it took me so long to find a resolution to my problems. Just wonder if sucking on a nightshade with all kinds of other chemicals might be just the same thing as eating an eggplant or a tomato.

This is totally anecdotal , just a guess after having taken a brief look at millions things that “might be a problem” carrying on and then finding that the so many of those smallest things grew to a resolution.

Wayne’s post above might make far more sense.

My recovery has been far more about some lucky guesses than any kind of research so take my advise with a grain of salt.


To your recovery.

Love

Matthew

[MaggieRedwings]

Morning Wayne & Matthew,

Both great insight and Matt, I never realized or I guess though about tobacco being a nightshade. Maybe it is time to put them down totally and see what happens. It has been a very long hard road and I am so hoping that it will end soon. It is totally wearing on my body and about to turn 60 I am just getting too tired to handle it.

Thank you both for your input and will be pondering it greatly and hopefully coming to a decision.

Love, Maggie

[Mars]

Hugs Mags,

Thought you could use that!

Love,
Mars

[tex]

Matthew - good point about tobacco being a nightshade. I tend to sometimes forget about the nightshades being problematic, since they don't normally seem to bother me.

The nightshades, of course, are characterized by their toxic alkaloid components - most nightshades, for example, contain solanine in their leaves, and in their "fruit". Tobacco contains the alkaloid pyridine, which has industrial uses as a chemical solvent and as a basis for various other chemicals, (including insecticides, herbicides, pharmaceuticals, food flavorings, dyes, paints, etc.), and it is usually extracted from coal tars. It's the pyridine that causes the familiar symptoms of nicotine overdose, (dizziness, headache, nausea, etc.).

In fact, research suggests that the Pyridine-N-glucuronides component of the tobacco-specific combination of nitrosamines and Pyridine-N-glucuronides, (which are suspected to be the primary sources of carcinogenicity in tobacco), may possibly be the most damaging ingredient in tobacco, as far as it's carcinogenic effects are concerned.

http://cebp.aacrjournals.org/cgi/conten ... t/14/4/885

In view of that, tobacco's use as a "treatment" probably falls into the same category as other "poisons" that are used as medical treatments, including, (but not limited to), warfarin, Botox, ergot, arsenic, cyanide, chemotheraphy, etc.

Interestingly, another very useful medication is derived from the deadly nightshade known as belladonna. Though every part of the belladonna plant is poisonous, (and narcotic, to boot), one of the toxic alkaloids that it contains is atropine, which is a very useful medication, when properly used.

Love,
Tex

[Gloria]

I worry a little that I might be intolerant to nightshades. I no longer eat fresh tomatoes, but will occasionally have them as catsup or as a sauce in spaghetti, chili, etc.

Last night I had a major reaction within an hour of eating dinner. I ate cooked green peppers and onions with tomato sauce and Italian sausage on rice spaghetti. It's the first time I've eaten it since restricting my diet. Asparagus for a veggie.

The night before I had tuna-macaroni salad: frozen onions, green peppers, tuna (in pure water), home-made mayonaisse with rice pasta and asparagus.

The only possible offending ingredients in either of these meals would be the green peppers, onions or tomatoes. Two of these are nightshades. My only skepticism is that I eat potatoes all the time and don't see a related reaction. Potatoes are one of the few items left on my menu. But I have stopped eating sweet potatoes because I suspect I react to it.

I ate leftover tuna-macaroni salad again for dinner tonight, but removed the green peppers. We'll see if I react tomorrow. No gurgling so far.

Matthew, I think you might have made an insightful connection between the tobacco, nightshades and Maggie's continuing problems. Unfortunately, forsaking a tobacco habit is much more difficult than giving up a food temporarily. But I think it might be worth trying to see what happens.

Gloria

[tex]

Gloria,

Just because you react to green peppers doesn't necessarily prove that you're intolerant of nightshades in general. Many people in the general population can't handle green peppers, because of the reason I discussed in my post titled More Evidence Of Benefits From "Poisonous" Plants. (Of course, if you react to red bell peppers, and tomatoes, you certainly might be intolerant of nightshades in generral.

Also, until our gut heals, many of us have problems with onions, and "spicy" foods, such as chili and Italian food.

Tex

[Trace]

I don't have anything to add re: smoking. I started at 14 (eek), smoked for 10 years through through my schooling. Quit when I got married. I don't think I was an addicted to nicotine smoker, just a habit-based smoker. (getting through college and grad school...keeping me awake) My thoughts are with all of you who are trying to quit. My Dad smoked for 67 years and quit....he was addicted to the nicotine. AND, he found that he had bowel changes after he quit. Me, not so much....maybe less C and more D. But good luck. His advice...be patient with yourself.

Re: nightshades.
I remember that I'd had an awful reaction (pain, fever, D, vomiting) about 24 hours after I'd eaten baked sweet potatoes. I'd eaten one on Frid night and one for lunch on Saturday. By S night, I was bad. We'd spent the weekend at our friends' cabin, and we just all thought it was the flu. But now, I think it was the sweet potato...the whole experience was so bad, I haven't eaten another one in three years!

Here's a question re: the leaky gut comment in your first post, Tex. Do I understand that leaky gut is what contributes to the malabsorption that Enterlab tests for? And is the leaky gut what leads to new intolerances b/c the body sets up a reaction when the proteins are outside the intestines?

I guess I just wonder how come I used to eat sweet potatoes, now, it seems, I can't. That also applies to plain red potatoes, but not Yukon Golds or organic blue potatoes...

Just thinking out lloud here. I get so much information from this board.

[tex]

Trace,

Unlike Irish potatoes, sweet potatoes are not nightshades - they're a member of the morning glory family. It's pretty rare to be intolerant to them, but a very few people are. As far as I'm aware, though, you're the only member of this discussion board who seems to be intolerant of them.

Fever is not a typical symptom of a food intolerance reaction. The presence of fever suggests that you night have had an infection due to some kind of pathogen. That said, I have experienced a few occasions where I have had fever, hallucinations, etc., during severe reactions. I'm pretty sure though, that I had some sort of bacterial infection in my gut when that happened, because I apparently also had diverticular colitis. (The reason why I feel sure about this is because diverticular colitis has the unique characteristic of causing a stenosis in the colon of a high percentage of people who have it, and two and a half years ago, I had to have emergency abdominal surgery to remove a blockage caused by a stenosis in my Sigmoid colon).

I understand what you mean, though, about having a reaction so bad that you quit "cold turkey", and never eat the suspect food again. About eight years ago, (before I realized that I was gluten sensitive), while on a camping trip, I ate some Little Debble Peanut Butter Wafer Bars, (or whatever they were/are called), and I got so sick that I never touched another one again. LOL.

Hmmmmm. That's a good question about the leaky gut issue, and I'm not exactly sure how to answer it. I don't know how much you know about the phenomenon of "leaky gut", but in a nutshell, the exterior walls of each cell in the surface of the lining of our intestines, (known as the epithelium), abut up against the walls of adjacent cells, and the spaces between the cells are known as "tight junctions". The tight junctions get their name from the fact that they are normally closed, (IOW, there is an infinitely small space between the walls of adjacent cells), in order to keep the contents of the intestines from leaking into the bloodstream.

As food traverses down the digestive tract, it is broken down into smaller and smaller pieces, as complex carbohydrates are broken down into simple sugars, and long polymer chains of proteins are broken down into shorter chains called peptides, and finally down to basic amino acids which can be utilized by the body. As nutrients become available, the tight junctions open just enough to allow them to pass through, to be absorbed into the bloodstream. With the condition known as the leaky gut syndrome, the tight junctions open too far, and tend to remain open too long, allowing relatively long-chain polymers, (undigested proteins), to pass through, and into the bloodstream, along with the "legitimate" nutrients. As this partially digested "garbage" accumulates in the bloodstream, some of it is deposited out in various organs in the body, (causing aches and pains and other problems), and various joints, (causing arthritis-like symptoms). The immune system, of course, perceives this "invasion" of "foreign" substances as an attack, and produces antibodies to attack the "invaders", thus causing inflammation, and all sorts of dire consequences.

So to answer your last question - yes, as long as those tight junctions are open too wide, any protein which ends up slipping through those tight junctions as partially-digested long-chain polymers, and which trigger the production of antibodies, is obviously perceived as something that the body cannot tolerate, under the prevailing conditions.

The fat malabsorption test, though, if I understand it correctly, simply tests for residual fats in the stool sample. An excessive amount is an indication that fats are either not being digested correctly, or are not being absorbed correctly. Either condition would imply mechanical, (physical), damage to the small intestine. I really don't know how this would relate to the leaky gut syndrome, but I suspect that while it may be in some way related, the results of a fat malabsorption test probably don't yield direct information about the presence of absence of the leaky gut syndrome. (Though I suspect it's almost universally true that anyone who is having a fat malabsorption problem, is almost certainly having a problem with the leaky gut syndrome, also). That's just a WAEG, though, so obviously, I could be all wet.

Tex

[Trace]

Okay. That all makes sense to me about the gut. Even though I don't know what's up with mine, I know it isn't right. I was told that I suffer from motility and "mechanical" issues. My upper esophagus gets stuck (?) quite often and the food just sits there. Then it opens and the food drops into my stomach. Pretty painful, but more freaky than anything. (Editing to add, then the food will sit for hours before it is passed out...Dr. called it gastroparesis. It seems to flare up when the MC is flared up.)


I'll have to review my charts. I think I showed a skin reaction to morning glories...and sage. Today, 20 minutes is all it takes for the stomach to become involved if I eat anything with sage. I wonder if that happened with the sweet potato????

[tex]

You know, thinking back, I suppose that I often/usually had gastroparesis along with my reactions, because my stomach seemed to almost completely stop working, sometimes, and gastroparesis would certainly explain the lingering full, or over-full feeling, and the nausea that many of us experience along with our reactions. Thanks for mentioning that. That adds another piece to the puzzle.

It sounds as though you may be more than intolerant of morning glories and sage - you may be allergic to them, also.

Tex

[Tricia]

Hi all,

Just thought I would add myself here as a second person who cannot tolerate sweet potatoes. Every time a eat them I get nauseated and throw them all up about 15-30 minutes later. I have tried several times in the past because it was such a weird thing. After vomiting I feel fine within 15 minutes and no residual problems. The sweet potato intolerance and my anaphylactic shellfish allergy I have had all my life but just now at age 40 being diagnosed with L MC. I guess I have to modify the stage one menu for me :). I read once somewhere that sweet potato has a certain type of sugar? (The white milky liquid that oozes out) that some people react to.

So much trial and error, but i am glad to hear Everyone’s experience. Sometimes well meaning people just don’t understand why you “cant just try a little” of whatever they cooked and they think I am being overly sensitive :)

Tricia