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Though born in France, Isabella Porter was mostly raised in Spain. As a result of her marriage to a Californian, she moved to USA in 1990. Unbeknownst to her back then, Isabella now suspects that perhaps a substantial increase in gluten consumption after moving to the US (among other changes) made her slight anemia gradually exacerbate in the States. Surprisingly, she did not have gastrointestinal symptoms. Therefore, she was seen by internists, hematologists, and gynecologists, but she never thought of visiting a gastroenterologist for her unexplained iron deficiency anemia: One of many reasons why further CD awareness is important, not only among general practitioners and other specialists, but also among the general public.

Her well intentioned physicians felt that Isabella was a 'healthy' young woman, eating well, naturally slender, and physically active. All her physicians made significant efforts to help determine potential causes of iron-deficiency anemia, including physician friends, but all tests they could think of showed normal values (she was never tested for CD). Therefore, her anemia was presumptively attributed to heavy menstrual cycles or simply referred to as unexplained anemia. Isabella was happy that her doctors had excluded "everything" - She felt very fortunate. Thirteen years passed, and as her iron levels continued to drop dramatically, she was reassured that anemia is common among women of childbearing ages. Isabella remained enthusiastic about these findings. Somehow she managed to remain active, happy raising her two young children, volunteering for the community, and exercising often. At times, she felt "like a car running on cheap gas"... but she kept on going.

Finally, in March of 2003, at age 35, her clinical mystery was solved. After moving to SLO County from out of State, finding a new doctor, and hoping to request intra-venous iron treatment for her chronic anemia, she was referred to Dr. Jeffrey Bloom in SLO, an internist. Preliminary blood tests highly indicated that her (then) extremely low ferritin levels (7) and related tests, were the result of untreated gluten intolerance. Though it was impressive that her new doctor had found this out during the very first round of testing, Isabella's first reaction was denial. She never felt she had gastrointestinal symptoms! However, she followed her medically prescribed GF diet. Choosing nutritious foods (only this time, her choices were all naturally gluten free), her iron deficiency anemia miraculously disappeared after 6-8 weeks going strictly gluten free. Intensive supplemental iron therapy for years had never improved her iron levels - only an intravenous iron regime had been successful until then. She was convinced the GF diet worked for her. Positive serological test results for CD (including EMA, tTG and others), positive HLA DQ2, followed by prompt iron level normalization while GF, all indicated CD. Followed by a comprehensive and very educational consultation with a gastroenterologist at UCLA familiar with celiac disease (Dr. Weinstein)  Isabella embraced the gluten-free diet completely. Over the course of time, with her villi gradually regenerating, she noticed that her hair had improved, her nails improved (no more white spots), and her skin had a healthier appearance. Isabella then realized that she hadn't been completely asymptomatic, as she originally thought. Besides manifesting with anemia, she had suffered other CD-related symptoms, such as headaches, occasional canker sores, and a few more manifestations that were not significant enough to have been brought up to a doctor. She didn't even know that these symptoms could be linked to untreated CD, an autoimmune disorder that she had never heard of before being diagnosed. 

Doing further research on CD and learning more about the disease, the GF diet, and the lack of awareness, Isabella became passionate about this fascinating condition. She wanted to help spread the word, and support those diagnosed and/or seeking preliminary diagnosis. As co-founder of Central Coast Celiacs in 2003, Isabella is happy to help advance the knowledge of this widely unrecognized multi-symptom disorder.

The GF diet may seem overwhelming at first... However, most symptoms improve, and even disappear. Most damage caused by untreated celiac disease is reversible on the gluten free diet. How many conditions can we have when we improve without the need of medications?

Isabella worked as a translator and interpreter in the US until her two boys were born, now ages 17 and 20. She has been married for 25 years to her husband David, a mechanical engineer. Despite being the only celiac, her entire family chooses to live in a gluten-free environment at home, supporting Isabella and eliminating potential cross-contamination risks.

Being consistently GF without accidents is vital to our health and wellness.

Post Diagnosis: Immediately after her anemia improved, Isabella started experiencing symptoms when she accidentally ingested even the smallest traces of gluten. However, she interpreted that as an amazing warning system that our immune system learns to recognize, and she is thankful that she can now identify the 'villain unmasked' - gluten. She thinks that she probably suffered from CD for 20-30 years, manifesting solely as mild anemia and low weight during childhood and puberty. At 5'5", she is also the shortest person in her family. After 13 years following the GF diet, her tTG IgA results  for dietary assessment are always negative, and all related test results have consistently remained unremarkable. She feels 100% (unless she accidentally ingests gluten).

Her entire family enjoys a variety of healthy GF choices, preferably organic, naturally GF foods cooked from scratch.

Contact Isabella at:

805 314 0394

thecentralcoastceliacs@gmail.com


 

 

 

 

 

Betty Guthrie was born in California and raised here on the Central Coast. As a young child, Betty was diagnosed with iron-deficiency anemia and suffered from fatigue and gastrointestinal problems, and she spent many school days visiting the nurse with stomachaches and fatigue. Over the years her condition steadily worsened as she lost weight, suffered serious diarrhea, blurry vision, memory loss, joint pain, neuropathy and ataxia. No doctor over the years could diagnose her condition until a local gastroenterologist finally tested her for celiac disease in 2003. More than 40 years had passed since the first onset of symptoms.

Betty was elated that she had finally found a name for the condition that had plagued her her whole life, but felt very isolated and alone in her efforts to follow the diet. After much research she realized that there had to be others in the area who were also suffering the same condition. Through an Internet posting seeking other local Celiacs, Isabella Porter was the first to answer. Betty then helped place a small notice in the newspaper inviting other celiacs and gluten-intolerant folks to join her for coffee, and eleven people showed up. Betty and Isabella then joined together to form Central Coast Celiacs in 2003. As of 2015, the group counts over 200 members, ranging in ages from infant to early 90s, and coming from all areas of California's Central Coast, from Cayucos to Santa Barbara, and inland.

Due to health reasons, Betty limited her involvement with Central Coast Celiacs in 2009. Isabella and Betty keep in touch regularly. We hope you feel better soon, Betty.

 


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