A personal account...
In 1996, I became the third person on my mom's side of the family to receive a diagnosis of celiac disease. The diagnosis came as a relief, really, because I had lived with intestinal problems and other unexplained health issues for most of my life. I spent somewhere between three days and a week in a hospital when I was 12 years old to try to sort out the cause of my health issues. I don't remember exactly how long I was in the hospital and actually there are fuzzy spaces in many of my memories prior to 1996. I now understand that one thing that happens to me when I eat gluten is what I non-scientifically refer to it as "gluten-brain." I experience the world through a kind of haze, and not one of the pleasant and recreational variety! Back to being 12 years old and in the hospital... After all of those invasive and unpleasant GI tests, the doctors determined that I had a “nervous stomach” and sent me home. I kept quiet after that and silently suffered with stomach discomfort, exhaustion, and gluten-brain for over 10 years.
All the grandchildren affectionately called my mother's mother Grandma Mimi. Mimi was the matriarch of our family. She was the first person in our family that we know for certain had celiac disease. My grandmother wished our inheritance consisted of millions of dollars in cash and assets, but instead she left us with celiac disease and a unique collection of tiny elephant statues. Well, we all have our quirks.
Mimi spent most of her life battling intestinal problems. It began in her youth and persisted. She went to many primary care doctors and gastroenterologists over the years but nothing the doctors suggested or prescribed helped. After decades of suffering, missing family events and evenings with friends, and after spending countless hours at the public library researching intestinal diseases, Grandma Mimi finally found evidence that other people in the world experienced problems like hers. She gathered articles and took them to her doctor. Amazingly, she also found a doctor who listened and agreed to test her. She was finally diagnosed with celiac disease! It was the 1980s and she was in her late 60s or early 70s. Her small intestine had experienced a great deal of damage by then. |
| This is a picture of an elephant from my grandmother's collection. It now resides with me. |
Ah, the 1980s. A decade boldly marked with shoulder pads, parachute pants, units (the one-size-fits-all clothing), and Madonna before Kabbalah and an English dialect. A time long before most people in the United States ever heard of celiac disease (including many physicians), before the all-too-popular rage of eating gluten-free, and before nearly every home in the U.S. contained at least one personal computer equipped with internet access. The 1980s. Remember Sixteen Candles and the impressive and flashy car phone physically installed in Jake Ryan's dad's car? We did not find that funny in the 1980s. Smart phones? What? In the 1980s, our access to information and products was different than it is now in 2014. As a 1980s family, we supported Grandma Mimi to the best of our ability, but we faced challenges and obstacles researching foods and medications. We made mini road-trips to a distant neighborhood to shop for her at a specialty food store owned and operated by two registered dietitians. This one store was the only place that sold gluten-free bread and other products. People came from miles and miles away to shop at this one store. Now, I literally walk downstairs and can buy a loaf of gluten-free bread at the regular grocery store on my block.
Sometime in 1995 or 1996 we learned that celiac disease presents
itself in multiple ways. Some people experience classic symptoms like my grandmother did (diarrhea and constipation), but other people end up with nutrient deficiencies, anemia, exhaustion, brain-fog, etc. We also learned that the disease runs in families. My mom discovered that she tolerated lactose after all. Bring on the dairy but leave out the gluten. For me, vindication! I did not have a "nervous stomach!" I had celiac disease! Of course, after the initial thrill wore off, I then realized I had to figure out what to eat. That took some time.
My grandmother died in October of 1996. She died of malnutrition secondary to celiac disease. It is possible that her diet was not as completely gluten-free as she had thought because of gluten hidden in medications, and unclear food labels and ingredient lists. It is also quite likely that the damage done to her small intestine during the decades before she knew about gluten and celiac disease was too much. Her small intestine may never have been able to fully repair itself. Despite eating regularly, my grandmother basically starved to death. She could not digest and absorb nutrients from her food because of the damage done to her intestine (for more information see the post Celiac Disease Part II: Gluten, the Small Intestine).
How common is celiac disease?
Estimates indicate that 1% of people in the U.S. have celiac disease.
Estimates indicate that 1% of people in the U.S. have celiac disease.
- That is between 1 in every 100 to about 1 in every 133 people in the U.S.
- The majority of the people who have celiac disease (the 1%) are unaware of their disease; they have not yet been diagnosed.
Resources:
Mayo Clinic (July 2010). Celiac Disease is on the Rise. Mayo Clinic's Online Research Magazine. Retrieved August 18, 2014 from http://www.mayo.edu/research/discoverys-edge/celiac-disease-rise.University of Chicago Celiac Disease Center (n.d.). Celiac Disease Facts and Figures. Retrieved August 18, 2014 from http://www.uchospitals.edu/pdf/uch_007937.pdf.
If someone in my family has celiac disease, will I get it? Will my children get it?
- Inheriting the genetic predisposition is not a guarantee that you get the disease.
- About 33% of people in the U.S. have the genetic predisposition for celiac disease.
- Less than 5% of the 33% of people with the genetic predisposition will ever develop celiac disease.
- In other words, a genetic predisposition does not equal fate.
- At this time, it is not known why most people with a genetic predisposition never develop celiac disease while some people do.
- A person with genetic potential for celiac disease can develop it at any age.
- Why? It is unknown why some people develop celiac disease during infancy, others during childhood or adolescence, still others during adulthood, and most never develop it at all.
- This suggests that a combination of a genetic predisposition plus other factors not yet well understood are involved in developing celiac disease.
- A person’s risk for the disease increases if there is a first or second degree relative with celiac disease.
Resources:
Mayo Clinic (July 2010). Celiac Disease is on the Rise. Mayo Clinic's Online Research Magazine. Retrieved August 18, 2014 from http://www.mayo.edu/research/discoverys-edge/celiac-disease-rise.
Mayo Clinic (July 2010). Celiac Disease is on the Rise. Mayo Clinic's Online Research Magazine. Retrieved August 18, 2014 from http://www.mayo.edu/research/discoverys-edge/celiac-disease-rise.
University of Chicago Celiac Disease Center (n.d.). Celiac Disease Facts and Figures. Retrieved August 18, 2014 from http://www.uchospitals.edu/pdf/uch_007937.pdf.
How is celiac disease diagnosed?
Celiac disease is diagnosed through medical tests that include blood work and tissue biopsies of the small intestine.
- tissue transglutanimase (tTG)
- endomysial antibodies (EMA)
- deamindated gliadin peptide (DGP)
- An endoscopy is a procedure in which a very thin tube with a tiny camera is used to exam then small intestine. During the endoscopy, biopsies are taken to examine the tissue and live images are seen and captured of the small intestine. Together, the images and tissue studies tell a physician (by way of a pathologist) about what is going in the small intestine.
- The results of the endoscopy reveals if and how much inflammatory damage exists in the small intestine.
- Tissue biopsy of the small intestine is the gold-standard for diagnosing celiac disease.
- It is very important that a person being tested for celiac disease keeps their diet the same and continues eating gluten. This is important for the blood tests and the endoscopy. If someone stops consuming gluten and then wants to get tested, it usually takes two to three months to prepare for the tests - two to three months of ingesting gluten after eliminating it.
Things to consider with regard to getting tested for celiac disease:
- Keep eating gluten. It is necessary to have gluten in your system to get accurate test results. Therefore, it is recommended that you maintain your current diet and keep eating gluten until all of tests are done and you have discussed the results with your healthcare provider.
- It takes a weeks to months to re-establish proper conditions in the body to accurately test for celiac disease. This can be a very unpleasant process for people who have celiac disease, removed gluten first, later want an official diagnosis and have to work backwards.
- Your healthcare practitioner will most likely run tests that look for other things in addition to celiac disease. This is good. Considering that 99% of people will not have celiac disease, your doctor or other healthcare practitioner must consider all possible explanations.
This is a link to the Celiac.org website. I know nothing personally about any of the physicians listed, but if you are searching for a doctor knowledgeable about celiac disease, this might be a useful resource.
Resources
University of Chicago Celiac Disease Center (n.d.). Learn How Celiac Disease is Diagnosed. Retrieved August 22, 2014 from http://www.cureceliacdisease.org/living-with-celiac/guide/diagnosis.
National Digestive Diseases Information Clearing House (January 27, 2012). Celiac Disease. Retrieved on August 22, 2014 from
Living with celiac disease
Before a disease can be managed, it needs to be diagnosed. If you think you have celiac disease, talk to your doctor about getting tested before removing gluten from your diet. This will give you the most accurate test results.
It takes time to adjust to a truly gluten-free diet and way of life. If you have celiac disease, it is essential that all aspects of what goes in and on your body are free of the offending gluten. Read labels, look at ingredients, do your research. For me, the smartphone has been the greatest invention, particularly at the pharmacy.
It takes time to adjust to a truly gluten-free diet and way of life. If you have celiac disease, it is essential that all aspects of what goes in and on your body are free of the offending gluten. Read labels, look at ingredients, do your research. For me, the smartphone has been the greatest invention, particularly at the pharmacy.
Some things to consider:
Cross-contamination at home and when
out. - In my personal experience, toasters are the most difficult appliance to deal with in a shared setting and so my husband and I don’t sI
- I also do not cook anything other than potatoes directly on the oven rack because I don’t want to clean the oven that often. Pizzas go on trays (his and her pizzas).
- Gluten-free options are increasingly available at restaurants these days. However, it is is still important to ask questions and consider areas where cross contamination may be an issue.
- Are corn chips fried in a separate fryer from wheat items?
- Are French fires gluten free by ingredient and if so, are they cooked in a separate fryer from other breaded products?
- When cooking on a grill, are they careful to use separate utensils?
- When reading the menu, look for the items that are inherently gluten-free and won’t require modification. Those are likely to be more successful choices.
- Know your pharmacy and pharmacists
- I make sure that my medical and pharmacy record has celiac disease on file and that gluten is listed as an allergen. I encourage my family members with celiac disease to do this too.
- In my experience, it is helpful to work with pharmacists to determine which medications you can and cannot take. They can be very useful resources.
- Always be your own advocate and ask questions if you have concerns.
- Some drug companies (name brand and generic) are easier to deal with than others and that is something you discover with time.
- When possible it is helpful to avoid waiting until the last minute to get medication
- Avoid filling prescriptions, particularly new ones, late on Fridays.
- If there are questions for the manufacturer, it will be difficult to reach them later on Fridays.
- If you are on the West Coast, assume the rest of the world is on the East Coast and will close at 2 PM if you have questions.
Here are some potentially useful links / resources:
