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When I speak on celiac/gluten intolerance or talk to individuals who might have gluten issues, I provde an information folder I’ve developed over the years. In it, is the 20+ REASONS TO GET TESTED FOR GLUTEN ISSUES listing shown below. (I compiled this listing from various sources. It will be a permanent feature on my website. Just click on the 20+ Reasons You Should Get Tested for Gluten Issues under the gfe tip sheets section on the sidebar to get the listing as a PDF file.) One of the frustrations with trying to make or get a diagnosis for gluten issues (from gluten sensitivity to celiac) is the fact that no two individuals will experience the same exact symptoms and no two resources (medical websites, reference books, etc.) will list the same symptoms. I had a number of symptoms on the listing over the years, but not all at the same time … which frankly just adds to one’s own confusion, as well as the doctor’s. Admittedly, in some ways, it’s like chasing a moving target. To further complicate matters, some individuals may only experience one symptom and about 40% of those diagnosed with celiac state they had no symptoms. (I believe that last figure could be highly inflated, due to individuals not recognizing symptoms as issues or symptoms being attributed to other medical conditions.) Hence, one rarely goes down a straight and narrow path with testing and diagnosis.
The National Foundation for Celiac Awareness (NFCA) states that the average time a person waits to be diagnosed is 10 years. (No data is available on the time needed for diagnosis of non-celiac gluten sensitivity and gluten intolerance.) The multicenter study published in 2003 (read more here) showed that about 1 in 133 have celiac disease in the United States. That figure equates to approximately 3 million people. In comparison, 2.7 million have epilepsy. About 2.1 million have rheumatoid arthritis. Lupus affects 1.5 million people. Type 1 diabetes affects 3 million people (6% of those individuals also have celiac). Multiple sclerosis affects 400,000 Americans. The number of people with celiac in the U.S. would fill 4,400 Boeing 747 airplanes! Are you surprised that many people have celiac when you see the statistics compared to the incidence of other disease? Most are. Somehow the 1 in 133 statistic doesn’t have the same impact until it’s shown in comparison to other well-known conditions. (Read more facts and figures about celiac in this large PDF file from The University of Chicago Celiac Center.) When the study establishing the incidence rate of celiac was published, it was estimated that 97% of individuals with celiac remained undiagnosed. Today, the NFCA estimates that 95% remain undiagnosed.
While progress is being made, many can’t get a celiac diagnosis. Some choose to go on a gluten-free diet on their own after doing research and talking to others who have experienced resolution of symptoms by eating gluten free. Some see the “writing on the wall” because they have family members diagnosed with celiac who shared their same symptoms before going gluten free. Some have the good fortune to connect with a good functional medicine physician, who believes that celiac is a subset of a larger realm of gluten sensitivity and gluten intolerance. These individuals are often directed to take the gluten sensitivity test to determine if gluten is an issue for them. (I happen to be in this latter category.) Others, while suffering, may still be eating gluten because their health care professionals have told them gluten is not a problem for them and they should continue eating it.
Take a look at these symptoms/conditions associated with gluten. If you have already been diagnosed and/or gone gluten free, you may well see issues you used to have or if newly GF, ones that are improving every day. Otherwise, are these symptoms you have experienced? Gluten could be the cause. Please don’t dismiss these symptoms. For most of my life, I thought my symptoms were just unique to me; i.e., that’s the way my body was. Doctors reinforced this thinking by saying things like “Everybody’s different. Your (insert symptom here) may be normal for you.” Sometimes people say to me that they have osteoporosis, but it “runs in my family.” I maintain that it’s not osteoporosis that runs in their family, but what’s causing the osteoporosis that runs in their family. Maybe the cause is actually gluten-related. Celiac is a disease of malabsorption, which means that the folks who suffer from it are not absorbing the vitamins, minerals, and fat that their body should be. For many of the symptoms/conditions listed below, malabsorption caused by gluten issues is the cause. Check out this list and know that as extensive as it is, it’s not all inclusive. One of the most rewarding things about being a support group leader and speaker on celiac and gluten issues is seeing the transformation in people after they go gluten free. It’s quite a pleasant revelation to note all the things one doesn’t have issues with any more after being on a gluten-free diet!
Not just GF, but GFE!
20+ REASONS TO GET TESTED FOR GLUTEN ISSUES
- A family member has been diagnosed with celiac/gluten intolerance or a disease that is associated with celiac/gluten intolerance
- Gastrointestinal issues, such as diarrhea, constipation, or alternating; IBS; abdominal pain; nausea; vomiting; stools that are smelly, large volume, and/or float; acid reflux (GERD); bloating; gas; belching/burping; etc.
- Skin issues: rashes (including blisters as in dermatitis herpetiformis), eczema, psoriasis, vitiligo, “allergies” to products that touch skin
- Diagnosis of other disease/conditions that can be related to gluten or “run in your family,” such as any form of arthritis, multiple sclerosis, fibromyalgia, diabetes, chronic fatigue syndrome, thyroid issues, or adrenal issues
- For women, gynecological/obstetric issues, such as premenstrual disorders, difficult menstrual periods, endometriosis, infertility, difficult pregnancies, miscarriages, stillbirths, hormone issues, and early menopause
- Neurological and psychological issues, such as depression, seizures/epilepsy, ADD/ADHD, learning disabilities, autism, tingling/numbness (neuropathy), bipolar disorder, irritability/”moodiness,” schizophrenia, “brain fog,” trance-like episodes, anxiety/panic attacks, OCD, dementia/Alzheimer’s, ataxia, restless leg syndrome
- Osteoporosis or osteopenia
- Insomnia and/or other sleep issues
- Frequent headaches (e.g., tension/sinus/migraine)
- Other organ issues: such as appendicitis; gall bladder, kidney, liver problems
- Other food allergies/issues, such as lactose intolerance
- Weight issues (underweight and can’t gain weight easily or average weight/overweight and can’t lose weight easily)
- Frequent infections/illnesses: sinus, strep throat/tonsillitis, bronchitis, ear infections, “virus”/”bug”/”flu”
- Down syndrome
- Cancer—particularly stomach, pancreatic, lymphoma
- Frequent or constant fatigue
- Canker sores/mouth ulcers
- In children: failure to thrive, developmental delays (e.g., speech, puberty), short stature, distended belly, leg aches/pain (e.g., “growing pains”), irritability
- Hair issues (e.g., hair falling out/thinning, bald spots/alopecia)
- Blood pressure issues (low or high)
- Dental issues (e.g., discolored teeth/enamel defects)
Note: Listing is also available in PDF here.