Tuesday, August 15, 2006

Getting the word OUT

I have started e-mail correspondence with my health insurance company asking for their help in getting the word out to the greater community. Sadly, as I write this I know that whoever manages to find my posts in this great big sea of the internet won't happen upon it and learn something totally new. They will have at least been searching or surfing in this direction. So I have asked that Blue Cross of Kansas to stand up and speak out. Everyone needs and deserves to know about Celiac Disease
I also found and excellent article today supporting my beliefs and personal findings about Celiac.
I just wrote and thanked the author for her work and efforts on all of our behalves.
Here is a link to this newsy piece. It's a good summary.


Monday, August 14, 2006


I found the following information on the internet
which supports some of my personal theories on
RESTLESS LEG SYNDROME http://www.amaluxherbal.com/restless_legs_syndrome.htm

Restless leg syndrome is also known as ekbon syndrome, leg jitters, fidgety legs, restless legs, anxietas tibialis, hereditary acromelagia and by several other names to be sure. Restless legs induced Sleep Disorders/insomnia is a very common complaint among people of all ages. There is also a relationship between restless leg syndrome and anxiety.
There are additional patterns that accompany some afflicted with restless leg syndrome.
Among them are general pallor, feeling cold or heat sensations, general indigestion, bloating, Stress, Stupor, etc. all of which contribute to sleep disorders and insomnia in general.
Interestingly many people have observed that certain foods will aggravate or bring on this very irritable restless leg syndrome problem in them. For some the scenario is as follows: a sizable amount of take out pizza is eaten (which at age over 40 can be almost any amount), this being followed by a lay down on the couch to watch television and the sensations that follows are hard to describe. The feet start to become uncomfortably "itchy-come-irritated" to the point that they cannot just be left resting in place - but must be moved.
It would be misleading to label this an "allergy."Of course pizza itself is not the culprit per se, because homemade pizza made from good ingredients will likely have no such effect - at least not on most people. Clearly if the problem were strictly pizza, places like Italy would have been driven insane by this problem a long time ago.
It is the ingredients however that are suspect and should be examined. The "high gluten wheat" that is often used along with the artificial quick leavening agents used in commercial pizza making are suspect.
(It should also be mentioned that for some people other chemicals and food additives may provoke Restless Leg Syndrome. (One person who visited our site from the UK said that monosodium glutamate provoked it in her.) These type of artificial substances are a little hard to cope with because foods naturally are easier for the body to deal with whereas chemicals are not easily digested by the body. That is why they remain traceable after the fact. Once ingested their effects take their course and until eliminated herbs or anything else may not counteract their effects. Perhaps override their effects but not stop them until they are eliminated from the body. Sometimes they cannot be counteracted.)
For many simply ingesting too much refined wheat has produced restless leg syndrome symptoms. The reason is that in some people the gluten does not break down completely after digestion into something the body can use. It is not the organism that is at fault but the substance that is indigestible (the substance that may trigger restless leg syndrome may vary from person to person). Even though the particle size is minute it still remains only partially digested - something that is out of place in the blood stream in this form. (When something is cleanly and fully digested it first becomes blood and then flesh and is therefore untraceable. This is called assimilation - a concept not accepted by modern science as being plausible. In place of it the concept of absorption is used. These are similar but very different concepts.)
The problem is therefore in the blood and what is coursing in it, or, more to the point, what shouldn't be coursing in it.
Among the young the energy inherent in youth will force wastes out of the body more readily through the normal channels of elimination by the digestive organs. If wastes happen to be in the legs, for instance, it is common that a rash or a boil will be the result in that part of the body because of the "centrifugal" effect of the bodies energies. Among the elderly however, most of whom lack the "heat power" of their youth at the proper intensity, the wastes simply sit (stagnate) and irritate on the inside. This is restless leg syndrome. (Restless leg syndrome can affect younger people as well.)
It is a fact that most of our blood is stored in our legs and the muscle contractions inherent in the simple act of walking help to circulate it. (this is also why a simple stretching of the legs with its contracting of the leg muscles moves the blood and temporarily relieves restless legs) Furthermore, if the organs that filter the blood are not doing their job due to obstruction or lack of adequate function what should have been removed out of the blood remains as undigested particulate in suspension within the bloodstream. It is the nature of these undigested substances to break down through fermentation, which in non-politically correct terms is basically a process of decomposition or rotting.
(It is one of the tasks of the kidneys to eliminate wastes from the blood. The kidneys especially affect the area below the waste. Many people who have kidney problems or kidney failure are also known to suffer more frequently from restless leg syndrome. Even so, restless leg syndrome is not an actual kidney problem per se.)
The fermenting of not completely digested matter in the blood vessels of the legs is by its very nature irritating. If in addition to this there is no physical activity as these subsequent wastes accumulate, the blood flow becomes even more sluggish, very much like a polluted river laden with all manner of toxin and particulate irritating to her surroundings.
Analogy A) Imagine our blood stream being like a river within our body. In this case a river laden with waste is a good analogy to explain restless leg syndrome by. A waste laden river necessarily slows and deposits its particulate burden along banks and sandbars. These murky and fetid deposits have a fowl stench that necessarily affects other life along it's banks and in the river itself. Eventually life becomes impossible along this waterway.
As in a river it can also happen within the bloodstream that the irritating substance can deposit itself out of solution onto the tissue of the vessels itself causing an irritation. It is well documented that fat can deposit within the vessels of the upper body, then logically gravity can surely carry heavier wastes into and onto the vessels of the lower body (legs).
This particulate is one major component of restless leg syndrome but, there is at least one other.
There is an energy associated with life - science can observe it and measure the work it does but there is no mechanical way to quantify it. The ancients simply called it "life force." Life force is more abundant in youth and diminishes in the presence of ailments and with age.
This very fine concept is hard to explain but, Herbalists throughout the millennia have consciously worked with it to attain health.
Although it is everywhere in the body and it concentrates more abundantly in certain organs it is the blood that carries it. Although there are different types of "life force," the "life force" or "vital energy" that pertains to the problem of restless leg syndrome is taken from the air we breathe and the food we eat converted through proper digestion and distributed to all parts of the body though the blood. In the Orient it is called "chi." This very fine life energy for various reasons stops "flowing freely" due to its insufficiency producing a stagnation. With it the movement of the blood in general along with the substances being carried in the blood also become inhibited. This is not a total stoppage of course, but a stagnation.
This "life force" is to our blood what octane is to the fuel we put into our cars. The more octane the more power. Or, it can be compared to wattage in relation to voltage in electricity. The more life force the more capacity/energy to move that which is stagnant.
Analogy B) Another very good analogy to illustrate the above fuel example in relation to restless leg syndrome is the using cheap fuel in a high performance automobile engine. In very short order there would be significant carbon deposits that would noticeably impair the engine performance or even corrode the metal itself. Why? Because there is too much impurity in the fuel and it will not completely or cleanly combust – leaving residue. Higher octane - less residue. More "life force" - less waste in the body. (Believe it or not our bodies can also produce carbon and other post- digestion residues. It does not take the form we would expect being largely invisible as carbon (or other) because it combines with other fluids and tissues in our bodies and because bodily pollution is becoming more the norm it is being considered normal.)
These, of course, are metaphors but, they might create a clearer picture of restless leg syndrome better in principle form than most other explanations illustrating why restless leg syndrome comes into being. Out of this stagnation and the various substances accumulating and fermenting releasing their heat and rarified toxins arise these local leg irritation which can range from mild itching to pain which is now commonly being called restless leg syndrome.
These explanations illustrate a few simple principles that depict what occurs in our digestive and circulatory systems that closely relate to the problem of restless leg syndrome. When the blood carries residues within it that should have been removed, Nature in an attempt to restore order and equilibrium will work without prejudice trying to remove them to the point of causing discomfort.
This is how a knowledgeable herbalist would explain restless leg syndrome.
Some explanations of restless leg syndrome offer very complex neurological explanations that avoid the issue itself. If you stub your big toe it will not be the cause of a head ache. Yet, this is the logic that is trying to be applied in some explanations of restless leg syndrome. But, according to the logic of Paracelsus, expect that if your legs are bothering you that the problem is likely to be found in the vicinity of your legs not in your head!
Although Restless leg syndrome is more prevalent today than ever before it is not a totally new phenomenon. The effects and causes have existed for centuries and the ailment it was associated with was named Podagra (bitter waters) by Paracelsus - himself a Herbalist - who's work is still being mimicked but never duplicated, in the 1500's.
According to the theories of Paracelsus Restless leg syndrome rls can be compared to gout or arthritis (podagra) only less intense, occurring within the vessels instead of in joints or skin. Also, the irritating substance is not so concentrated as to provoke an actual inflammation in one local area but because of its dilution within the liquids of the vessels is being more diffused over a larger area more likely producing an irritation rather than actual pain. This is similar to how a sliver of wood will irritate the flesh or how an irritating substance on our skin may cause irritation, only with restless leg syndrome the substance is much finer and on the inside of the vessel walls. If there are too many irritating substances being carried in the blood it would stand to reason that they can also alter its chemistry. The blood can become too acidic (uric acid, lactic acid, etc.) (Some may define this corrosivity more accurately as being alkaline).
Today restless leg syndrome is far more prevalent than ever largely because of our modern circumstances. A sensitive person will notice that our present day food may be "prettier" to look at but all too often it lacks fragrance, taste, and nutritional value. Many popular foods are in fact synthetic or contain synthetic substances or have been stored or preserved for too long to contain any "energy." These synthetics are not foods and therefore remain as irritating residues in our systems after digestion because they are indigestible.
One can argue that these are not completely scientific explanations, yet restless leg syndrome is not a disease as such, it's a syndrome. There is no scientifically based diagnosable physical problem therefore there is no scientific explanation or solution for restless leg syndrome, although science is looking in the direction of brain and nerve functions as probable causes.
Some associate restless leg syndrome with iron deficiency. Although iron does help carry oxygen which is essential for the flow and conversion of energy in the body, not everyone with iron deficiency alone has restless leg syndrome. The concept that the energy that flows in the blood stream must first be produced and accumulated by the body is ignored. Although this energy is related with iron its effects are finer and entirely separate from it. Healthy iron content (which is not supplied through normal iron supplements) also contributes to normal kidney function which can affect the lower body (below the hips).
In addition stress is commonly associated with and aggravates restless leg syndrome. This is a closely related symptom. Emotional stresses consume our energy (life force). This leaves less to be circulated in our blood stream. With age there is even less life force available, this deficit in life force leaves the blood less vital. This cannot be measured by chemical means like say, anemia or the like. http://www.amaluxherbal.com/restless_legs_syndrome.htm

Search words:
Restless Legs SyndromeCauses, pain, painsrestless leg treatmentannoying restless leg syndrome where your legs begin to ache and tingle and you feel the need to move them,cure, cured, no drugs, DRUGS. Symptoms

Ginger Cookies

innocent little ginger cookies

“MMMM…. Ginger Cookies, whoa, these are the best cookies. Just right - chewy. Try them. I mean anybody would love these. You wouldn’t think they are wheat-free at all.”
I was going on and on about the cookies as I helped my daughter unpack in her new apartment. We had been busy getting her arranged and had not formally stopped to eat breakfast or lunch. I had purchased the cookies at my home grocery and had brought them as part of my wheat-free safe food stash. I had already consumed about ten of the fabulous little cookies when I was pitching them to my husband and daughter. “Really you have to try them…” I reached in the bag for another cookie (remember I missed breakfast and lunch) put it in my mouth and flipped the cookie sack over to read the ingredients. I had to know what made these cookies so good. It had been a while but I had purchased this brand of Ginger Snaps in the past and had found them to some of the best packaged Gluten-free cookies, but I really had not remembered them being this good. As I bit into the cookie I read the first ingredient and simultaneously spit the cookie out. I was immediately sickened. WHEAT! The first ingredient was wheat! Oh, my gosh! Damn, what have I done? How did this happen. No wonder they tasted so damn good. I was mad and scared that I had messed up my diet. What’s next stomach pain, gas, diarrhea? I had a plane trip later that day. I immediately said a prayer that the alien in my stomach feeling didn’t hit mid-flight. I then became mad and sad that what I had found so satisfying was not to be ever again. Damn, how did this happen?

Okay, I was at the grocery shopping in my special health food department. I remember picking up the package marked “Gluten-free Ginger Snaps” in the cookie aisle and putting them in my cart. Oh yes, there was new packaging that caught my eye. Ginger Snaps, the same brand positioned right next to the bag I had just put in my cart, As a designer I was drawn to the new fresh styling so I picked up a bag and eyed the package. Hmmm, I liked the design. At first I wanted to buy the second bag just because it was prettier but then I noticed the freshness dating and compared it to the date on the bag of cookies in my cart. Ah ha! Boy, am I smart I told myself the new packaging is fresher. So I exchanged the bags of cookies and strolled off with the prettiest bag of cookies in my cart.

Now, sitting on my daughters freshly made bed I was thinking of the bed I had just made for myself. I turned the “pretty package” of cookies over to the front. “Ginger Cookies”, just “Ginger Cookies”, not “Gluten Free” at all. Luckily my digestive system was none the worse for wear, you know ginger in general is said to comfort an upset stomach. But alas, I was not to escape Scot free.

On route home, aboard the plane that night the cramps began. Leg and arm cramps. Restless legs are so bothersome in all ready restricted quarters. The cramps and pains continued for another four days mostly noticeable as I each night as I tried to ignore them and fall asleep. I had plenty of time to think this all over and over. Unless I mess up and consume wheat, I live my life pain free, which is so amazingly wonderful. I am so extremely happy that I have found out what had made me get sicker and sicker for 20 plus years. As another commercial came on the TV tonight telling sufferers of painful cramping legs that there was a name for the condition “Restless Leg Syndrome” I thought “so what”. Actually I thought “so the #$#$#$ what”. What is in a name? Just like I was told I had “fibromyalgia” – unexplained muscle pain, or “irritable bowel syndrome”- a gut that hurts all the time, duh. Just names, not rhymes or reason. Just learn to live with it my doctors would say or maybe “try this new drug’.

So maybe it’s easier to take a drug than avoid the cause but even with all the drugs I took, which each posed new health risks, I never had a totally pain free day. So, it is my mission to inform the world that I am cured. My trigger appears to be wheat. There maybe more but at the current time I am do quite well when I avoid anything with any association with wheat. I’m certain that some of the other millions out in this big world that deal daily with the same health issues that I have dealt with are being affected as well by something they are ingesting on a daily basis. I am not a doctor, and never intend to be. I see a lot of ignorance in our medical community. If there is not a dollar to be made then no one cares. If you are healthy, cured and no complaints where will the next dollar come from. Do doctors really want cures? Do drug companies really want cures? The way I see it, no they don’t they want treatments, therapies, drugs, and x-rays and blood work.

I just want to spread the news that I'm better and maybe you can be too.

Saturday, July 29, 2006

Even a little bit is too much

This wheat free thing – my new way of life is hard stuff but definitely worth all the effort.
The most frustrating thing is eating out as even when I think I have done my best to avoid wheat I hardly ever have a totally wheat free experience.

The awareness that I have somehow consumed the substance that is so offensive to my system may come almost immediately. I’ll find myself having to take deep breaths as the feeling of not getting enough air overtakes me. When I first get this feeling, I try to relax and take a minute to rethink my food choices. I had just assumed that the sauce my sister in law was stirring cornstarch into a few minutes ago was from scratch but as I the heaviness grows in my chest, I excuse myself from the dining room and check the kitchen trash. The detective in me discovers that the sauce mix she used contains flour. So, it’s not all in my head. I am having a reaction. I can hardly get my breath now so I don’t feel like eating. Dinner for me is over. That was dumb. I need to be more assertive about my condition and not be so afraid to make a big deal about my restricted diet and find out exactly is in what I eat.

Sometimes my hands and feet will start to hurt at night and my first thought is one of panic. Pain scares me. I lived for 20 years with some kind of pain every day. Inflammation racking through out my body. Pain I could not escape. Pain my doctors told me I would just have to learn to live with. When pain creeps back into my body my first thought is that the night mare is back and I get panicky. Then I remember that maybe it could just be something that I ate that day. Something wheat related that my body is rejecting. Oh yes, I had Cosmopolitan at a girlfriends earlier that evening. She made it with Grey Goose Vodka, a vodka made with wheat and barley. Gosh, why didn’t I remember that then. I know beer is off limits, the only spirit I feel safe consuming is wine. I do enjoy a glass of red wine. Yea, thank you God for grapes, delightful fermented grapes.

What really makes me mad is after dinner out with my family just as we are winding down the evening and strolling the sidewalk and making our way to the car it hits me. Get me home now. Forget the city Christmas light tour, a stop by the video store or visit to the ice cream parlor. An angry alien is in my bumping around in my gut and wants out so GET ME HOME NOW!

After one of these episodes my stomach hurts for four days. If you have ever suffered from food poisoning you most likely know this kind of pain. I can make that comparison as I’ve unfortunately had food poisoning more than a handful of times too. It's not a stomach ache feeling it’s a pain feeling. A deep hurting that leaves a constant grimace on your face. No, it’s definitely not fun but at least now I now what caused my pain and that in a few days it will subside and I’ll again be better.

In the years before I figured out why my stomach always hurt so, I would be doubled over with what my doctor casually diagnosed with IBS (Irritable Bowel Syndrome) and not feel like eating. I remember reaching for what I thought sounded good and I thought was good for me, a graham cracker or a bowl of cereal even a bowl of chicken noodle soup. Crazy isn’t it. At practically every meal I ate, I was actually putting more poison into my body. I say poison as that is how now see grains such as wheat. As I was first learning about wheat and gluten intolerance I read a response to question posed to an expert about a wheat free diet. The question was: how much gluten can Celiac safely consume. The answer was posed as a question back. How much rat poison can one safely consume? Although I first thought this comparison was quite extreme, I now have personally adopted this view. Even a little bit is too much.

Monday, March 27, 2006

How it started...

A year ago I stopped eating wheat consciously.

I say it that way because it is easy or at least easy to understand that bread, pasta, and cereals are essentially wheat, but everyday I learn what other foods have wheat lurking within. I stopped eating wheat because I finally made the association that wheat was the cause of my blistering skin rashes and stomach pains. What I didn't know was that giving up wheat would also heal my irritated bladder, all arthritis inflammation, pain and mood. Wow, and none of the many doctors I have seen for a variety of conditions ever brought up the concept of any of my health woes being caused by something I was eating.

Here is a list of all of my previous health problems for which I saw specialists, had tests, major drugs and was very close to surgery.
Irritable Bowel Syndrome
Lactose Intolerance
TMJ (jaw pain and locked jaw)
Rheumatoid Arthritis
Bunions on both big toes
Night Sweats
Blistering rashes on face, and arms
Debilitating fatigue
Brain Fog
Bladder Pain
Restless Leg Syndrome
Carpal Tunnel Syndrome

Another time I'll go into my specific symptoms that better descibe my previous health situation outlined above, but what I want all to know is that over a period of 20 years I lived with some sort of pain everyday and today wheat free I don't. Nor to I take any of the medications for my severe arthritis.

A few years ago I stopped taking my Methotrexate for the RA and for 6 months was fine but the pains and inflammation came back as bad as ever and my Rheumatologist told me that I could never go off the meds again. It ends up that the reason I felt better for a while was that I was not eating wheat for many months, but I had put it back into my diet (perfect hindsight tells me this). At the beginning of this first good health period I had vowed to change my diet for 6 months and eliminate process foods hoping by digestive problems would be helped. I had essentially put myself on a low carb diet, but I didn't really intend it to be so. But because I had cut out simple carbohydrates and felt better, I continued to do so.

Along with feeling better, I started looking better and quickly went from a tight 10 to a very loose 6. I didn't want to be rail thin so I begun adding more simple carbs back into my diet and then I felt bad again. Real bad, have to have painkiller bad. Nothing to mess around with bad.

I don't know where I first heard of Celiac disease or a wheat allergy but I do know when it was. It was a year after I had to go back on the arthritis drugs. I immediately Googled : "wheat", "allergy", "IBS" and "Brain Fog" Hmmm. Maybe I'm not such a hypochondriac crazy lady. Giving up wheat sounded nearly impossible but I decided to give it a try.

I gave up wheat. I felt great for 4 months, but "they" say you should really be sure that it is Celiac and get tested. My gastro doctor agreed. I would have to go back to eating wheat for 4 months. It was "really important" for my health to be sure. I told her that even if the tests were negative I was positive that my stomach was better and really enjoyed thinking clearly. But I did it anyway, and felt like crap again for 4 months.

I really over did it last 2 weeks before my intestinal biopsy so they would find lots of horrible sad ville in my gut and be able to clearly announce a definitive title to what was ailing me. But guess what? The tests were negative. "Eat wheat if you want but if you feel better when you don't and choose to avoid it's up to you." I was pissed. Four months lost.

I know my body. When I went back to eating wheat for my "gluten challenge" my face and arms once again became a continual rash of intensely itchy blisters. My face was also stuck in a continual grimace from persistent gnawing stomach pain. Eating, particularity dining out meant having my meal pass through my digestion before the drive home was complete. No fun. Nope no wheat for me. Stupid tests. Stupid doctors.

Since I was in the stupid doctor frame of mind I wasn't in the mood to see my Rheumatologist for a refill of RA medicines. I let it go again and stopped taking those drugs that he had insisted I could never again exist without. I told myself that I wouldn't let it get as bad as it had before and I would make an appointment soon. Now it has been over a year and they only reason I have to see that or any other of these "specialists" that I and and my insurance company have funded through the years, is to tell my story and ask why no one, not a one ever thought of wheat or no wheat.

So do I have Celiac Disease or is it "just" a wheat allergy? That part I really don't care about so much anymore. What interests me now is learning how eat this way for life and sharing my discovery with others.