Gluten Intolerance
An open letter to
my grandson
Dear Mike, (name changed)
The last time I saw you, you told your grandmother and I that you recently failed to hold a good job because of irregular bowel habits. Inasmuch as this could be an inherited trait, I feel that I should tell you my story in dealing with the same problem. Because you were the victim of a bitter divorce between your mother and my son, you and I have spent very little time together. Every time a divorce occurs, there tends to be a breakdown of communications relative to hereditary factors. Environment becomes the major factor. I suspect that your stepfather, failing to produce a biological son, has attempted to “relive his life in you”. This often turns out badly with natural off springs, and with a step child, it can become much worse. I have reluctantly put this letter together in case it may help you. I am making it an open letter so that it may help others. Celiac sprue, or gluten intolerance is an inherited abnormality.
As you know, I am neither a research scientist nor a doctor. I am a sixty eight year old man who should probably be dead already; a victim of gluten intolerance, or celiac sprue. Thanks to an informed doctor, and specialists to whom I was referred, I am alive and was spared the suffering that others with the same disorder have experienced.
Above all, thanks to my creator who gave them wisdom and provided healing.
I wish only to share my own experiences with anyone who wishes to read them in the hopes that I may be of some help. I must tell it in my own way, and not try to “sanitize” the story.
As a child, I was thin and apparently undernourished. I ate plenty of the “right” foods. So much so that my parents’ friends told them that it “made me poor to carry it around”.
What should have been an important symptom was that we had
an outdoor toilet and attended a country school with the same type of facility.
I could look down the hole to see what others had done. Mine was not like that.
An exaggerated comparison would be to compare a dog pile to a cow pie. An
important symptom is to never in your life to have properly shaped feces.
Through my middle life, I was more normal in size, and had
some gastric disorder. At one point, approximately my mid forties, I was put on
an ulcer regimen, and told that I had scars of a once active ulcer. I
once was told that I had slightly low blood pressure and low cholesterol;
another piece of the larger picture.
In my lifetime I have had three hernia operations. The last
one when I was in my late fifties. I was given an oral antibiotic. As I
look back, my celiac problems kicked into high gear about that time. I wish
those involved in research would look for an important link here.
As my condition worsened, I lost weight,
down to 145 pounds, (About 30 pounds under the norm.) I had swelling of the ankles and great
pain in my left ankle. At this point, I changed doctors and upon
observation of my symptoms was referred to a specialist in blood disorder.
Celiac disorder interferes with the ability of your digestive system to absorb nutrients. Your blood loses its ability to carry oxygen to all parts of the body. This placed me at extreme risk of a coronary. One of the factors common to undiagnosed celiacs is early death. Mike, I shudder when I remember that your other (maternal) grandfather died too young. The thoughts that you are in double jeopardy is very troubling.
I was referred to a specialist in the digestive system. I
was scheduled for a complete examination of my digestive tract, upper and
lower, using modern methods. I escaped the surgical examination that many of my
fellow celiacs have been subjected to. Before the procedure, I was given two
units of whole blood. This, I assumed, was in case I needed extreme surgery.
The coronary risk was there. At this point, I was experiencing gassy
diarrhea that floats on the water in the commode. This is another important
symptom.
Biopsy of my small intestine resulted in my celiac
diagnosis. I was placed on a gluten free diet I was administered
therapeutic doses of a B vitamin and took iron supplements. Healing took place
very quickly, for which I remain very thankful.
Your grandmother and I now winter in Florida. A new friend is a retired pastor. His wife is hypersensitive to odors. The social problems this creates is mind boggling. My heart bleeds for them. I have always been hypersensitive to some odors, resulting in stuffy nose to downright nausea. This is another symptom, although of lesser importance. I want to scream, “get the blood test”, but I have learned that this is not acceptable for someone without a doctors license.
Approximately ten years after my celiac diagnosis, I was
diagnosed with type 2 diabetes. I have since learned that there is a
significant correlation of diabetes and celiac disorder. I pray that all
celiacs would be checked for diabetes and all diabetics would be checked for
celiac disorder. A new blood test
has been devised for this purpose. The young doctor that assisted at my
diagnosis is now in practice and uses it freely with great confidence.
My father was a chef by profession. I have always taken an interest in cooking, and therefore am pretty good, with my wife’s help, at knowing what things commonly contain wheat flour. I eat in restaurants freely. Occasionally, I get something that contains gluten. The result is a few days of discomfort. Often this accompanied by a dry, clay like stool that is difficult to pass, on occasion requiring an enema.
As a parting note, let me point out that big businesses contribute heavily to colleges and universities. It has been shown that politics can interfere with science. Certain nationalities have a higher than average number of celiacs. Among them are Northern Europeans such as the Dutch, and Italians. Sad to say, I have read that Italians have let politics prevail and stopped routine screening of their population. It seems that Italians must live up to their national image and eat lots of pasta.
As you know, our church recently burned to the ground, and we lost a large library of Christian books. Your grandmother and I have spent many hours helping to rebuild that library. The job of screening incoming books fell upon me. One of those books was written by a well known faith healer. He advises his readers to stay away from wheat flour and sugar. Another book written by a prolific author of Christian fiction speaks of health food addicts who refuse to eat anything made of white flour or sugar. It seems that many people who are unaware of celiac sprue are aware of the cause.
My brother was recently diagnosed with a skin problem related to wheat. This is a genetic abnormality related to celiac sprue. When two brothers have the same problem, there is a strong family trait in evidence here. Although none of our children have yet exhibited any symptoms, they may be a walking time bomb. The genetic factor can skip one or more generations and come on later.
And now, Mike, it has come time to finish this letter. It is my prayer that you find a solution to your problems. I hope you find a sympathetic, informed mate for a life partner. Never fall into the blame game of holding your problems against me. Remember that I did not originate them through any willful act, but am a victim myself.
Sincerely,
Grandpa
A support group called CDAA bible study
Before I received my celiac diagnosis, I was in ill health. Ill health led to depression. After I was on the gluten free diet, my health improved, but the depression remained. The bad news that I was also diabetic, plus grieving over the death of some half dozen friends caused my depression to deepen.
After some time, I recognized the signs of depression and asked my doctor to put me on an anti-depressant. The medication therapy, prozac, improved my sense of well being and my physical condition improved also.
I, with this in mind, call on medical science to consider the use of anti-depressant therapy as part of treatment for the celiac condition. It would seem to me to be a good thing to break up the cycle of ill health which leads to depression which leads to worse health which leads to worse depression.
It has recently come to my attention that there is also a link between celiac and autism. I went into Google and did a search on celiac and autism. Google returned 93,000 pages.
Just as a post script, I have just learned in searching the web, that it is fairly common for those who are gluten intolerant to be allergic to latex.