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Once we become ill, we can resent, deny, or even coddle the experience,
or we can learn from it and use it for the good of ourselves and others.
Don't
let illness become your entire life: Some people get so involved in being a sick person
that the illness becomes their whole life. You are not your illness. Don't lose yourself. Don't
get so caught up in being sick and seeming sick to others so they'll believe you that you won't
let yourself do anything at all. Keep interests outside of health related stuff. Try to learn not
to focus too much on your symptoms. If you spend time analyzing and discussing every single
symptom every day, you'll have no strength left for anything else. What's most important
here is balance. You can be an informed, educated, involved person without getting so caught
up in the disease and illness behavior that you lose the rest of your life and yourself. --from
Sharon, who has CFIDS, selected from internet
- - - - - - - -
The truly handicapped of the world are those who suffer from
emotional limitations that make it impossible to use the capacities and controls they possess. If you have a chronic disease,
you need not be emotionally handicapped if you continually strive to be able-hearted. Able-heartedness is within the grasp
of all of us. I don't think of able-heartedness as a permanent, static state, however. Developing and maintaining this
quality is a process that ebbs and flows, depending on how helpless you feel. Even if you feel in the grip of hopelessness,
you are behaving in an able-hearted way by any expression of interest in another. Shared interest and compassion is what establishes
meaning and purpose in life.
Dr. JoAnn LeMaistre/lives with MS
Living with Interstitial Cystitis and Fibromyalgia – one approach By Joyce Jamerson
In the world of auto-immune difficulties, if you have one,
the possibility of developing another is very common. My first diagnosis, in 1995, was Interstitial Cystitis.
At that time, IC was barely recognized among physicians. Most females have struggled with a urinary tract infection
from time to time, but urinary pain and cramping without bacteria was unexplainable and therefore, thought to be in your
head.
Through
the research of Dr. Clive Solomons, IC was given a name and the Vulvar Pain Foundation had its birth in 1992. Because
his research came to involve more than just vulvar pain, it eventually became known as the Pain Foundation. You can
learn all the technical data by searching key words: interstitial cystitis and vulvar pain.
Symptoms involve pain anywhere below the waist!
The bladder wall becomes inflamed, causing urinary burning, itching, stinging and area tenderness. Muscular pain, digestive
problems, yeast infections and joint pain are also a possibility. To put it in daily terms, because of the pain during
a flare, sitting can be difficult, sleep may be a problem and intimacy at best is painful if not impossible.
Pain and fatigue and
urgency can encompass your entire body and anyone with this diagnosis surely knows the location of many public restrooms,
if indeed, they are able to be out and about.
My urologist had little to offer
that was non-invasive, except anti-depressants and an antihistamine. He suggested a trial of Elmiron, but it was of
little help, so I used a low dose anti-depressant for almost two years and finally tapered off because it seemed of little
value. Because of dietary changes, weight loss is common. (Some may actually gain weight if they become more sedentary
because of the pain.) It doesn’t take long to realize that acidic foods can trigger pain episodes, so mustards,
vinegars, many nuts, citrus, tomatoes, pineapple, etc. need to be avoided. Low carb meals and a reduction in sugar
are especially important if there is yeast involved. Cranberry juice, in this instance, is not helpful and in
fact, may actually complicate the problem. Pain flares can be soothed by stirring 1/2 teaspoon of baking soda into a
large glass of water to alkalize the body. Studying the acid/alkaline balance in the body may be of benefit. Because
of our American diets, we frequently are too acidic – a good breeding ground for ill health.
Later, while visiting a church in another town,
I overheard a woman describing her health problems to a friend. I asked, “Do you have interstitial cystitis?”
She was surprised that I even knew what it was, and we immediately began to compare symptoms and treatments. This was
before the conveniences of computers and internet access were affordable. Weeks later, she sent me a paper; I believe
it was by Dr. Solomons, on how food oxalate can trigger pain.
I didn’t know what an oxalate was but soon learned. Oxalate is a
powerful irritant that can cause excruciating burning in tissues. That article eerily described my health problems.
Since I was trying to improve my heath through good nutrition, my diet had been heavy with spinach salads, sweet potatoes
and wheat bran – all extremely high in oxalate! You can learn all about this on the Pain Foundation’s web
site – www.vulvarpainfoundation.org I consider the oxalate connection the single-most important thing
I’ve learned in dealing with these problems.
So I started playing with my food – in a good way. No sweet potatoes
for two weeks, then add them back in quantity. Pain would increase, most of the time starting in the left calf and radiating
throughout my body. On and on it went, until I had a list of trigger foods and started avoiding things that would bring
the onset of pain.
Since
my food base was shrinking, (my husband says “if it tastes good, I have to spit it out”) I tried new things.
I’ve always liked to cook, so my kitchen became a laboratory. Over the years, I’ve whittled and improved
my diet until I’m fairly comfortable most of the time although I fatigue easily and have to pace myself. My diet
is not only gluten free, but also free of soy (high oxalate), dairy, and most sugars, as well as staying low in oxalate.
Oxalate triggers my pain like nothing else. You can find a chart of low-medium-high oxalate foods at: http://www.branwen.com/rowan/oxalate.htm
Next:
The fibromyalgia complication
Because
of pain in all four quadrants of the body, the diagnosis of fibromyalgia was added. Fibromyalgia pain is widespread,
with 18 tender points throughout the body. The diagnosis of fibromyalgia is usually given if at least 11 of these points
are tender to the touch upon examination. It is a misunderstood condition because patients generally look healthy
but in reality are living with daily exhaustion, generalized aching and sleep disturbances. Many have acid reflux and
IBS symptoms, as well.
Although
eliminating some foods did provide some relief of IC; muscle and bone pain, IBS, fatigue and tissue pain were still a valid
part of life. Again, the recommended treatment was anti-depressants and sometimes steroids. Since my system is
so touchy, reactions to medication were common and I couldn’t handle being drugged to the point of life on the couch.
The rheumatologist told me, “If you’re not going to take this medication, then I can’t help you.”
Life was dismal, painful and complicated by the onset of menopause and grief over the death of our 19 year old daughter.
She had died suddenly in 1993 due to a brain hemorrhage. For one and a half years, I followed the guaifenisen
treatment as outlined by Dr. Paul St. Amand. There are many dietary intricacies to that approach, and each patient will
have to decide if it is valuable for them. You can learn more at: http:fibromyalgiatreatment.com/board/
In 2000, an allergist discovered a slight allergy
to wheat and corn, so those things also had to be eliminated. Since I could no longer eat wheat, I switched to rye crackers.
Those brought on some of the most intense bone pain I’ve ever experienced. Going from doctor to doctor, I tried
everything from conventional medicine to acupuncture and holistic medicine. Although I learned a little more about my
body and its needs, nothing was of lasting help. In 2004, Celiac disease became my next diagnosis. (That’s
another article!) With Celiac, you have to avoid the protein that is in certain grains: rye, barley and wheat.
Oats are acceptable only if they are grown in dedicated fields; most American grain crops are rotated, contaminating our oats
with wheat.
Since
medication is such a problem, dietary control is my choice. It’s not easy or convenient, but I firmly believe
that those with autoimmune difficulties owe it to themselves to go wheat free for at least 6 weeks. What is six weeks in the
grand scheme of things if it could mean a reduction in pain and a more comfortable life? (Slowly removing high
oxalate foods may also bring benefits.) Wheat and dairy are notably problematic, as are high glycemic and sugary foods.
Acid/alkaline balance is also important. For more tips on improving IC with some natural approaches, go to: www.evenbetternow.com This site provides some articles on IC & bladder health, as well
as acid/alkaline balance and digestive health that might be of interest. Many natural approaches can be found on the
internet; some good and some not so good. This is not a recommendation of any product. Each must do his own homework
and decide if a natural approach is more/less beneficial than our standard Western medicine.
Only small amounts of honey or maple syrup
are my sweeteners and the jury is still out on artificial sweeteners so I do not include them. Frozen veggies are the
next best thing to fresh; I try to avoid food in cans or boxes, except for a few canned fruits. As much as is possible,
prepare meals with fresh ingredients. Don’t forget to exercise. Gentle walking, yoga and stretching are
all helpful.
Because
I am post-menopausal, hormone replacement has been beneficial. Each person has to study the pros and cons and make a
decision. My decision was for low dose bio-identical hormones, rather than the pre-fab type. Estrogen cream also
helps soothe dry, burning vaginal tissues. Valuable items in my medicine cabinet are: Atarax (antihistamine) as
well as a dose of baking soda for IC flares; Azo for soothing a touchy bladder, Darvocet for pain episodes and Flexeril at
night for restful sleep. Epsom salts baths (with baking soda) provides a soothing, relaxing respite for sore, aching
muscles. Vitamin supplements are valuable, but each has to do their own research. What works for one, may not
work for another. When feeling better, the temptation is to try forbidden foods again. I’ve done my share
of this, but quickly regret it and return to the strict regimen.
If you are not a person of will power, this approach will never work for you.
It’s not for the faint hearted or easily discouraged, but you may reap great benefits from your efforts.
It’s kind of like
the Christian life, isn’t it? Not for the faint hearted but the rewards can be out of this world!
  Our physical eyes sees the prosperity of the wicked, but spiritual eyes see a far greater treasure. "Do not
be envious of the workers of iniquity. For they shall soon be cut down like the grass...delight yourself also in the Lord
and He shall give you the desires of your heart." (read all of Psalm 37)
Our physical man can't understand why God would allow pain in a righteous man's life, but a spiritual man understands
pain brings out the true character: "Examine me, O Lord, and prove me; try my mind and my heart."
(Psalm 26:2)
Our physical man sees only pain in sorrow, but the spiritual sees benefit. "Sorrow is better than laughter for
by a sad countenance the heart is made better." (Eccl. 7:3)
Our physical man does not see God during affliction, but spiritual eyes see the goodness of God and His word: "Before
I was afflicted I went astray, but now I keep Your word. You are good, and do good; teach me your statutes." (Psalm 119:67-68)
Our physical man sees ongoing affliction and feels despair, but spiritual eyes the eternal and hope replaces despair:
"Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by
day. For our light affliction, which is but a moment, is working for us a far more exceeding and eternal weight of glory,
while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are
temporary, but the things which are not seen are eternal." (2 Cor. 4:16-18)
Damaged Goods, Broken Cookies, and Thumbs
Virgil Fry
"Sometimes I feel like damaged goods." The statement
came from a nice-looking, highly successful woman. She's witty, energetic, and smart. She's been praised for being
a model teacher, church member, mother, and spouse. And yet,
few people ever know of her struggle to fit in. Now middle-aged, she's been diabetic since age 5. Daily injections, blood
and urine testing, and monitoring food intake aren't flashy conversation topics for a child or adult, and this disease
is not one that shows. When it is known, advice like "is that on your diet?" flows freely. And that's where the rub comes: at times, to her it seems like the whole world is healthy and happy, and she's
taking care of business alone. Yet, it's that inner battle
that sensitizes her to others. She's a master at tuning in to the masked messages of fellow strugglers who also feel like
damaged goods. At Camp Star Trails for children and siblings
living with cancer, they sing a wonderful song by Larry Penn:
I'm a Little Cookie yes I am
And I was made in the cookie land
On my way to the cookie
stand
A little piece broke off of me.
Well I ain't as round as I might be
But I taste
good just you wait and see
I can love back just twice as
hard
As a regular cookie can.
A myriad of experiences causes us to perceive ourselves as
less-than-perfect. All of us struggle with inner turmoil fostered by unseen elements: depression, hidden temptations, and
passions, relational rifts, alienation from God and humanity, evil motives, violated trusts. Many years ago Dr. Paul Falkner preached a sermon on thumbs I'll never forget. He held up his hand and pointed
to four long fingers that look similar, as if they are part of a matched set. In comparison, he held up a thumb. Shorter,
off-centered, not quit like the others, the thumb can definitely suffer from an inferiority complex. But it's the thumb
that truly gives power and dexterity to the other fingers. Try to tie your shoes without it. In human terms, we all feel like thumbs in certain areas. As if everyone else in the world is percolating along without
a care in the world. As if no one can grasp or is willing to listen to our stories of brokenness and limitations. But in reality
we, like the oddball thumb, are a vital part of teams that couldn't function without us. In those moments when we view ourselves as damaged goods, broken cookies, and thumbs, opportunity is given to hear
higher, deeper callings. Voices from the past that break through the centuries and proclaim:
A bruised reed he will not destroy. (Isa.42:3)
Come to me, all you who are weary and burdened, and I will give you
rest. (Matthew 11:28)
Lord God, we are mindful of our need for rest, refreshment,
and restitution. We are aware of our broken spirits, and we believe in your promise to make us whole. Help us, Lord, to own
our brokenness as a bridge to You, and as a bridge to others around us who also feel like damaged goods. Through the One who
loves us into wholeness, Amen.
from "Lifeline
Newsletter," 8/97
contributed by Joanne Beckley
How
to Handle People
Who Do Not Care to Understand
Pat Gates
FROM THE MAIL: A topic I would like discussed on this page is: How to handle people who do not care
to understand your situation and could never begin to understand what your life is truly like. I usually just do not
bother with those kind of people, but treasure the friendships of people who do understand and have compassion in their hearts
for me.
______________•______________
Like I've said many times since starting this publication,
being misunderstood or un-understood (sometimes I have to make up words), is what I hear most often from those with ICI. Why?
Because it hurts. Because it never ends. Some of us live years with chronic illness and we've come to the conclusion we
are finally understood and accepted and when we least expect it, there it is, the comment... the comment that reveals the
true thoughts about how that individual preceives our lifestyle and our thought-style (another made up word). 95% of the time
we are much better off than we realize in the eyes of the Determinator (the one who determines just how sick or well we
really are). Rarely are we worse off in their estimation. This is due to the But-You-Look-So-Good syndrome we live with
as well as the Sit-Around-Do-Nothing-As-You-Look-So-Good syndrome. No one can look so well and feel so bad--at least that's
what the Determinators believe.
Some "normals" are just ignorant and they will learn one day. Others
refuse to learn. There are even some ICI'ers themselves who misjudge other ICI'ers and don't seem to learn
from their own experience with this. The writer of the note said she doesn't usually bother with those who refuse to understand
her and that's probably the best thing if you have that choice. As she said, it's good for us to treasure our
friends and family that do trust us and who try to understand and support us.
However, some ICI'ers
have close family members in their physical and spiritual family who they have to encounter, sometimes on a daily basis and
may not be able to avoid the comments of distrust. So what do we do with those who REFUSE to try and understand us?
- Don't
pretend to be well to make them feel better about themselves.
- Don't pretend to be sick when you feel better because you are afraid
they won't believe you when you feel worse.
- Don't be embarrassed around them and begin to make excuses for yourself.
- Don't feel like you
always need to explain yourself.
- Don't
allow their disbelief to influence you to doubt yourself.
- Do
be honest with yourselves and with them. That doesn't mean you have to tell them what you think and how you
feel, but if you are feeling sick, don't hesitate to say it. If you are feeling better, don't hesitate to
say it. In other words, don't allow their disbelief to dictate how you must respond and how you feel about yourselves.
- Do make a choice whether
or not you want to reveal to them how you are feeling. Most often it's best to keep quiet if they have proven
themselves to be a doubter. Your silence may prevent further hurt within you.
- Do try and keep your hurt level down by dismissing their doubt
from your mind and don't dwell on it. Satan will be there trying to tempt you with anger, discouragement, and self-doubt
--- don't allow him to do that.
- Do treat the doubter as we are told by God to treat everyone -- to do good, to be kind, and
not to take vegeance.
- Do
remember God knows your heart, your intentions and your body. If everyone in the world doubted you and refused to understand,
you always have God to lean on, who knows you and will strenghten you.
If we don't talk about
the illness, everything must be OK.
If we do talk about it, "Complaining," is what they say.
If we endure pain silently, it can't be all that bad,
If we don't, we "Mope, and shouldn't be
so sad."
If a better day comes, how good it is to finally get out,
"See, that's
all you need to get better," is what the doubters shout.
So what do we do with their disbelief that
often causes fear?
We dismiss their doubt and live without the hurt that lingers near.
Pat Gates
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I realized something
about myself, recently. I had been pushing myself and ignoring how I really feel in order to try to be the well person others
want/expect me to be. Just the other day I encountered a Doubter and a Determinator (see article above) and rather than go
along with what they demanded of me, with confidence, I calmly told them I was physically incapable of what
they wanted and expected from me. It felt so good to just state the truth without going into a big speech of defending myself
as well as not giving in to how they presumed I should be. A good, short, confident response, put nicely, is basically all
we need, most of the time. Notice I didn't say it will always be accepted, but rather it is all we need.
-Pat
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You
can't go home when home's no longer there...
We all go back there, visiting in our minds
the life we once had, from time to time, sharing the life we had and the person we used to be with some of the people we now
meet. I think sometimes we do it to remind ourselves and try to get others to see that we weren't always the bumbling
idiots we now sometimes feel ourselves to be, whether or not that's how we appear to others.
It's like our past life is a building condemned after a disaster - an earthquake,
hurricane, tornado, fire, or flood. Instead of tearing the old house down and rebuilding, or taking what can be salvaged and
picking up the FEMA check before moving on and starting over again. Instead of making a constructing a new life, we pitch
a little tent and camp out in the yard, dreaming about how nice the place used to look, all the great times we had in there.
We even drag passersby in to see the shambles and try to describe to them what it used to look like and how happy we were
in there in the days before the disaster. If you are still camped
out in your old yard, it's time to move on. By all means, take what mementos you can find, but it is time to start building
new dreams, new memories, new life. Research has shown that
seniors do better when they extend themselves to care about others, doing volunteer work to help people who are in similar
or worse straits than they are. So do those who are living with chronic illness.
What's your
fatigue level?
"In 1995 I called the CDC and asked them for data from the polio epidemics in the 1950s, year by year, and discovered
that the attack rate of M.E. [Chronic fatigue syndrome pg] was about fifteen times higher in the late 1980s-early
than the attack rate of polio in the early 1950s. We don't get paralyzed in the formal sense; we just drop out and disappear."
-Hilary Johnson
"The fatigue is not everyday tiredness, experienced after an energetic day’s gardening. It is an
exhaustion of body and mind so profound that it becomes a concerted effort to think, walk and sometimes even move, sit, eat
or breathe.’’ M.E. sufferer
“A friend is
someone who knows the song in your heart and can sing it
back to you when you have forgotten the words.”
Touched by Kindness
(in praise of friendship)
For Linda, from Ruth
My special
Hawaiian friend, Linda Seltenright, has been a bight light in my life since I first met her and her husband, John, in 2003
on a trip to the islands. We worshipped together in her husband's office building with a very small group of other
Christians. In the short time we were there with them, we developed a very strong friendship. She seems to know when
I could use a joke, a silly email, or a beautiful picture of God's artistry of the sunrise over Kaneohe Bay on which she
lives. We have kept up with each other, our families, our children and grandchildren, our joys and sorrows, our accomplishments
and failures, and best of all, our Christian friendship. The emails stream back and forth on a regular basis. Yes, I
am so blessed to have met this fine lady and especially to have her for the great person she is.
Ruth H. Miller
For Marsha, from Sharon
Thank
you for everything you have done for our family, from taking my child into your home for nine months and treating him as your
own to sending tapes of gospel meetings and the latest... the potholder that takes over three hours to make!
You are a dear friend and sister in Christ.
I
treasure my friend because she took the time to speak to me today. She often says words that tells me she doesn't
understand why today I feel good but yesterday I didn't and tomorrow, who knows. She may never understand. But I love
her because she cares enough to talk to me. -anonymous
For Cindy Granke, from Pat
Thank you
for being my friend. You respect my need for confidentiality so I can tell you anything. You allow me
to complain when I've had a bad day -- you forgive me when I go overboard with complaining. Even when you have
so many physical problems, yourself, you listen and put me first, as well as remember me in your prayers. You recognize my
weaknesses as well as my strengths and because you are so very understanding, I know you continue to love me
when I'm down in the valley or on top of the mountain. With you, I can feel completely free to be me. You have been a
good friend and I thank God for you.
Your friend and sister, Pat
A friend loves at all times.
Proverbs 17:17
There is a friend who sticks closer than a brother. Proverbs 18:24
Faithful
are the wounds of a friend. Proverbs 27:6
Ointment and perfume delight the heart,
And
the sweetness of a man’s friend gives delight by hearty counsel.
Do not forsake your own friend or your father’s friend,
Nor go to your brother’s
house in the day of your calamity;
Better is a neighbor nearby than
a brother far away. Proverbs 27:9-10
As iron sharpens iron,
So
a man sharpens the countenance of his friend. Proverbs 27:17
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True friendship isn't about
being there when it's convenient;
it's about being there when it's not.
A friend understands
our silence.
Friendship is born at that moment when one person says to another,
“What! You, too? I
thought I was the only one.” - C. S. Lewis
Prosperity begets friends, adversity proves them.
Friendship is a single soul dwelling in two bodies.
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"By friendship you mean the greatest
love, the greatest usefulness,
the most open communication, the noblest sufferings,
the severest truth, the heartiest
counsel, and the greatest
union of minds of which brave men and women are capable."
If you were another person would you like to be a friend of yours?
|
 round the corner I have a friend,
In this great city that has no end.
Yet days go by and weeks rush on,
And
before I know it a year is gone,
And I never see my
old friend’s face;
For life is a swift and terrible race.
He knows I like him just as well
As in the
days when I rang his bell And he rang mine. We were
younger then—
And now we are busy, tired men—
Tired with playing a foolish game;
Tired with trying
to make a name. “Tomorrow,” I say, “I
will call on Jim,
Just to show that I’m thinking of him.”
But tomorrow comes—and tomorrow goes;
And the distance between us grows and grows. Around
the corner!—
yet miles away...
“Here’s a telegram, sir.”
“Jim died today.” And that’s what we get—
and deserve in the end—
Around the corner,
a vanished friend. - Henson
Towne
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A Friend
Also Loves
Mr. Hyde
What a lot of people don't know is that a chronic illness can
change your personality. Sometimes I feel like Dr. Jekyll and Mr. Hyde. When I am well I can be a very friendly and nice person...then
the illness kicks in and I turn into a whole other person. I used to be the most patient person in the world now I seem to
be the most impatient person in the world. I used to be an extrovert outgoing, and love being around people. Now people just
exhaust me and though I like being around people it can be too much for me. -selected off internet
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Life with Celiac Disease
By Joyce Jamerson
This weekend we’ll be
having some company, so today was a prep day. I like to do things ahead of time, if possible. After some cooking
and baking, the counters will be wiped down with kitchen cleaner or anti-bacterial spray, taking care to put the pans I used
in a special place. Later, I’ll do some cooking and baking separately for me, and the same utensils cannot be
used unless they are stainless steel and well scrubbed. If the same tray or pan is used for my baking, it will be lined
with parchment paper. Frank came in for lunch, so I make his sandwich on one counter, and prepare my chicken salad and rice
crackers on another so there will be no cross contamination. Does that sound like someone who has (OCD) Obsessive Compulsive
Disorder? It might seem that way, but it’s really daily life with Celiac disease. When fixing food
that contains gluten for my husband, I either do it on waxed paper or wipe the counters thoroughly and then wash my hands.
If my food were prepared on the same surface, it could make me sick. He even has to be careful about kissing me if he
has just been eating cookies or some other gluten snack.
In the world of auto-immune disorders, Celiac disease has been a little known
problem in our United States up until just a few years ago. It is a disease of the small bowel; the inability to digest
the protein from four major grains - Wheat, Barley, Rye and Oats. Oats do not have the same protein and can be tolerated
by some if they are grown in dedicated fields, where they cannot become contaminated with other crops. Gluten is the
common name for the offending protein. These proteins are found in all forms of wheat (including durum, semolina, spelt
and kamut), and must be eliminated.
Gluten
will damage the mucosal surface of the small intestine causing all sorts of havoc with digestion and absorption. The
variety of symptoms include diarrhea and/or constipation, IBS, weakness, anemia, fatigue, early onset osteoporosis, bloating,
gas, abdominal pain, weight loss and bone pain. Vitamin and mineral deficiencies are not uncommon. There are varying
levels of sensitivity; some become ill immediately or the reaction could be delayed for a day or even longer. The disease
can be in silent form, having absolutely no symptoms until a fracture or broken bone becomes a clue. Because it is inherited,
it is very important to have regular bone scans and check vitamin D levels if Celiac has been discovered in other family members.
There is also a skin manifestation of the disease (Dermatitis Herpetiformis) that causes an itchy rash. For some, DH
is the only symptom with no intestinal involvement. Treatment is the same; total avoidance of gluten.
Thanks to the efforts of Dr. Alessio Fasano,
we now know that one in every 133 persons has CD instead of one in every 10,000 as once thought. He came
to Baltimore after practicing in Italy (where CD is more commonly diagnosed), and was instrumental in developing the proper
diagnostic tools. The gold standard of diagnosis has been biopsy (and still is according to some doctors), but blood testing
is reliable and more easily available. The tTG test became available and screening for the disease began. It is
no longer considered a rare disorder, so try googling Celiac Disease, and you will find tons of useful information.
www.celiac.org is the very informative site of the Celiac Disease Foundation.
Complicated by interstitial
cystitis and fibromyalgia (see last month’s article), my own journey took 8 years and 10 different doctors. We
learned that Celiac is inherited and can lay dormant in the genes. Although he was never diagnosed, my tall, thin paternal
grandfather with intestinal difficulties probably had Celiac. (Grandma said he was a pain to cook for!) We also learned it
can be triggered by trauma. My own symptoms began one and a half years after the death of our 19 year old daughter.
Finally, a diagnosis.
Staying
on a GF diet is easier now, since the labeling laws have improved, although it is best to verify gluten free status with each
company. Various lists and message boards help with this information and one soon learns which companies are reliable.
Many restaurants now have gluten free menus, which is quite a commitment for the staff. Prep areas must undergo stringent
standards to maintain their GF status.
Digestion
becomes compromised; so many celiacs are also sensitive to dairy and soy. The diet becomes even more limited but the
benefits of gluten free living can be widespread. A few months of being gluten free may mean a great deal of difference
in the health status of many with auto-immune difficulties. What are a few months in the grand scheme of things if it
brings about a better quality of life?
There
are many gluten free products available now that make life easier. The pressure is on to improve and alternative flours
have been blended to produce a product that is just as good, if not better than those with wheat. General Mills is the
latest mainstream company to recognize the growing market for gluten free cereal that doesn’t have to come from a health
food store. Now and then, I can now enjoy a bowl of Rice Chex!
Living with CD takes a lot of planning and preparation but is certainly doable.
Waiting until we are hungry before thinking about the next meal is not a wise thing. We can’t control our genes
or how our bodies react to stressors and environment but we can control what goes into our mouth. If our bodies are
to be a temple, doesn’t it make sense to plan ahead and keep that temple in good working order if it is within our realm
of possibility?
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