An intolerance to gluten can cause a wide array
of symptoms, some debilitating. Moreover, delays in
diagnosis or common misdiagnoses can be devastating
to long-term health. Gerta Farber elaborates on her
research and personal experience with Celiac disease.
I don't recall ever hearing of Celiac disease before I diagnosed myself 7 years ago, at age 75. When my doctors found no answer to my disabling colitis, I turned to a surprising wealth of universal web-site information about healing my microscopic-colitis, about Gluten-sensitivity, and its wide range of toxic-possibilities. This is but one of the numerous sites that was vital to my education in '02: ("The Neurology of Gluten Sensitivity' LL Won/me 2002 Dept of Neurology, Queen's Medical Centre, Nottingham, UK. (PubMed- indexed for MEDLINE). Clinicopathological features heal on a gluten-free diet and relapse when gluten is reintroduced. A number of neurological syndromes may be associated with celiac disease... This is an exciting hypothesis because it offers new therapeutic possibilities including simple exclusion diets....')
Little did I realize that the disease, being genetic, would cause a revolution in my life, reaching far beyond my own illness. My gene test results with Dr. Kenneth Fine, (www.enterolab.com) indicated that I had two identical genes for gluten-sensitivity. His report explained, "Having two copies of a gluten-sensitive or celiac gene means that each of your parents, & all of their children will possess at least one copy of the gene".
This startling information seemed to present the first opportunity to identify the causes of numerous mysterious and tragic illnesses and deaths in both of my parents' families. One by one I was shocked to discover or recall illnesses that could probably be linked to parents and grandparents now known to be gluten-sensitive.
My test result became the nucleus of my discoveries. Although my research and writing have been limited by concerns for the privacy of family and friends, as well as by the comparatively small number of family members with whom I have been in touch on a regular basis, I suspect that my summary of newly discovered and recalled family history can be a vital addition to the growing technical research on gluten toxicity. Everyone who is referenced here has a direct familial-link to my mother or my father. As each of my parents had 5 siblings, these are large families, but replies to my suppositions have been rare; of the twelve relatives who decided to be tested so far, five results have been positive for Celiac or gluten-sensitivity.
Aside from the startling reports linking dietary-gluten and dementia, perhaps even more shocking is the possibility that gluten may provide answers concerning the mysterious deaths of my younger brother & my two young-adult-nieces by cancer. My gene-test indicates, in addition to my brother's link, that each of my nieces had at least one parent and two grandparents with at least one gluten-intolerant gene. ("Increased Cancer Risk Associated With Delayed Diagnosis of Celiac Disease", by Jefferson Adams, 8-14-07, www. celiac.com/articles/1187/1 / Increased-Cancer-Risk )
The following summary of the generation-statistics available to me, of family-members who have a probable link to this genetic-sensitivity, may simplify my report:
1. In our oldest generation, my maternal grandmother was reported to have critical "senile-dementia" ; and my paternal grandfather was a victim of Parkinson's disease.
2. Of their offspring, the deaths of my mother and her three sisters were all attributed to Alzheimer's disease (my mother's 1980 autopsy specifies this finding). Her brother was a cancer-victim, with possible dementia; and my father's sister inherited my grandfather's Parkinson's disease.
3. In my generation there are 4 relatives who have succumbed to Alzheimer's; three first-cousins and my sister who is in the last-stages. My youngest brother was a victim of cancer and bi-polar disease. Another cousin and I have tested positive for gluten-sensitivity; while two additional cousins are victims of Parkinson's- one in each family; while one of these cousins was a cancer victim as well.
4. In my children's generation, my daughter and a cousin have been diagnosed with gluten-sensitivity, and two of my young-adult nieces died of cancer. Two other offspring have exhibited commonly-reported signs of Asperger's (on the Autism-spectrum).
5. In this youngest generation, my grand-nephew has tested positive for Celiac disease, and another child has been diagnosed with Asperger's syndrome.
Some new genetic discoveries concerning Parkinson's explain the inclusion of this disease in my summary. (From "Psychiatric News, Sept.17, '04,Volume 39 #18, 'Could it be that the two most common neurodegenerative disorders, Parkinson's disease and Alzheimer's disease-- share the same common origins?")
I have also included Asperger's and bi-polar disease, two additional alterations to brain function that are possible results of gluten-toxicity. ("Gluten Causes Brain Disease" by Prof. Rodney Ford M.D. www.celiac.com-Scott-Free Newsletter)
My own brain-condition, at age 82, may present a wider view of "cognition", as the AD literature seems to focus primarily on memory. As most of my family resides in another city, I have been far more educated about senior-issues in the six years I have been a tenant in a large senior-housing facility. My mysterious lifelong memory-disability, which I now recognize to be celiac-induced, has progressed in its severity to match the disappearing memories of several current neighbors, who are exhibiting obvious or diagnosed dementia, along with several more who have moved to full-care facilities.
It has been of particular importance to me, to be able to study the differences in our "cognition". At some point these friends have eventually required daily aid for household tasks they can no longer perform. But, in spite of my severe memory-loss, the aspects of my cognition for reasoning, awareness, and especially (as an artist), my creativity, have not been affected. If I am correct, that this is probably due to my seven years of being gluten-free, this may be of great importance, proving that under similar circumstances dementia may be avoided, even as a senior.
I have also learned that although these seven years of being gluten-free have resulted in a few welcome changes, the previous 75 years of ingesting gluten have probably resulted in the limited healing of most of my other symptoms. These include ataxia (loss of balance) chronic migraines, permanent dermatitis herpetiformis (that is about 50% improved) and minor but continuing colon damage. The Celiac factor in my degenerating osteoporosis & widespread arthritis has gradually necessitated the use of a walker for at least two years - yet one more obvious consideration for testing of gluten-sensitivity at the earliest possible age.
There are some reports now estimating that approximately 1 in 100 persons have celiac disease and approximately 1 in 10 people are gluten-sensitive. The results of the chance union of my two genetic-gluten-effected-families, has created circumstances that far transcend coincidence, and should not be ignored.
Gerta Farber is an 82 year old artist and writer. She has also become a researcher since she was diagnosed with Celiac disease in 2002. She was shocked to learn in her research, that genetic-gluten-intolerance has undoubtedly been linked to many family deaths, primarily genetic-Alheimer's, Parkinsons, and cancers.
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