Signs, Symptoms, and Diagnosis

We started this website with the premise that you already had medical reason to avoid gluten, but what if you aren’t sure about that yet? I’ve included a massive list of gluten related illnesses in the Resources for this course, and as you can see, it honestly can affect ANY part of your body. In most cases where there is autoimmunity or chronic inflammation, there is an issue with gluten and/or its posse of cross reactors.

Vodjani, O’Bryan and Kellerman concluded in 2008 that: “Gluten sensitivity can exist even in the absence of an enteropathy [gut tissue damage]. The systemic nature of this disease, the overwhelming evidence of an immune pathogenesis and the accumulating evidence of diverse manifestations involving organs other than the gut, such as the skin, heart, bone, pancreas, joints, nervous system, liver, uterus and other organs necessitate a re-evaluation of the belief that gluten sensitivity is solely a disease of the gut.”

Both Celiac Disease and Non-Celiac Gluten Sensitivity are enigmatic and sometimes baffling conditions, both for patients and practitioners! Not every person will get all of the symptoms, and even the ones you do get may randomly come and go. Some may not even be obvious unless you go completely off of gluten and reintroduce it (that happened to me). In general, symptoms tend to be most often associated with the gut, skin, brain, and sometimes liver. I mention that last one specifically because there are some for whom the only indication of Celiac disease may be elevated liver enzymes. Non-specific hepatitis, or Non-Alcoholic Fatty Liver disease may also occur.

More typical symptoms include: gastrointestinal distress, acid reflux/GERD, nausea, loss of appetite, stomach/belly pain, diarrhea, constipation, bloating, foul gas, vomiting, malabsorption, multiple nutrient deficiencies (particularly iron, calcium, magnesium, vitamins D, and B12), multiple food allergies, fatigue, brain fog, poor memory function, difficulty forming thoughts, lethargy, depression, anxiety, ADD/ADHD/ASD, irritability, irrational anger, mood swings, loneliness, isolation, night terrors, panic attacks, short temper, suicidal thoughts, acne, bruising, dandruff, dark circles under eyes, itching, dermatitis, eczema, hives, pale skin, skin cancer, rashes, systemic pain, muscle pain, joint pain (burning, stiffening, swelling, etc), back pain, ataxia, leg cramps, muscle spasms, swelling in hands and feet, brittle nails, teeth, and hair, high occurrence of oral cavities (weak dental enamel), bad breath, mouth sores or ulcers, canker sores, tongue sores, gum disease, asthma, bladder infections, blurred vision, fevers and chills, chronic fatigue, coughing, dizziness/vertigo, fainting, fluctuating weight, hair loss, headaches or migraines, hemorrhoids, high/low blood pressure, hypothyroidism, night sweats, racing heart, seizures, sinus pressure, sleeping issues, bed wetting (in children), etc.

Some issues specific to women are: breast tenderness, early menopause, frequent miscarriages, hormonal level swings, heavy, painful periods, infertility, swollen bladder/cervix, etc. There is also a more common occurrence of endometriosis among Celiac women. Celiac men may also note concerns with fertility; in some cases this is linked to a deficiency in zinc. This is quite a long and complex list of symptoms, isn’t it?! No wonder practitioners struggle to recognize us in the wild! Some of the above symptoms may also be associated with other diagnoses that appear in combination with Celiac disease quite frequently, including but not limited to: Mast Cell Activation Disorders, Postural Orthostatic Tachycardia Syndrome, Ehlers-Danlos Syndrome (Hypermobile type more commonly), Hashimoto’s Thyroiditis, Grave’s Disease, autoimmune liver conditions, Endometriosis, Crohn’s Disease, Osteoporosis, Arthritis, Multiple Sclerosis, or other allergies and autoimmune conditions.

If you’re nodding along or checking off multiple symptoms or diagnoses on this list, it’s well worth taking that information back to your family doctor and asking for testing. If you have a first degree relative who has Celiac disease, you have a 20% chance of having it as well. The first test usually performed is a blood test for Tissue Transglutaminase (anti-tTG) antibodies. Results over 12.0 U/mL are considered positive. Some practitioners may not be concerned about a “borderline” diagnosis, but it would be prudent to eliminate gluten/grains from your diet if you receive such results as this test was designed using results from patients with late stage Celiac Disease and it is reasonable to cease consumption of gluten at an earlier point to prevent worse damage. Private labs like Cyrex also offer more comprehensive blood panels that look at a few additional factors, some including typically acknowledged “cross reactive foods” like other grains, dairy, etc.

The trick about these tests is that you need to have gluten actively in your diet at the time of the test. These tests may be followed with an endoscopy during which you are likely to be sedated so they can send a camera and small probe down through your esophagus and stomach to the small intestine where they take tissue samples which are used to rule out other conditions like H.Pylori, and to determine the level of damage to the gut (which is measured on the Marsh scale where 1 is little damage, and 4 is significant or severe damage). If you have previously removed gluten from your diet and feel better without it but want to be sure of diagnosis, you may be able to request genetic testing as there are a few known markers – HLA DQ2, HLA DQ2.5, and HLA DQ8 – for Celiac Disease. It is my hope that genetic testing combined with positive response to dietary changes will become standard care for those who have already eliminated gluten from their diet.

Testing for Non-Celiac Gluten Sensitivity is still under development. Keep an eye on researchers and bloggers like Dr Tom O’Bryan and Dr Alessio Fasano for updates in that area. An additional possibility is an IgE allergy to wheat (or other grains and dairy) which can be tested by an Allergist-Immunologist. Individuals with this diagnosis would conduct themselves more like someone who has a severe peanut allergy, rather than an autoimmune patient. The symptoms may overlap, but the mechanism is different so treatment options may vary.

Obtaining diagnosis can bring on feelings of grief, overwhelm with everything there is to learn, frustration due to wanting to just feel better already and the slowness of the healing process, and also vindication or relief in knowing that you weren’t imagining the symptoms. There is a cause, and you can do something about it. This course is here to help to reduce the sense of overwhelm, and hopefully make it an easier, well supported transition into a whole new world without gluten.

Important links:

What Your Doctor May Not Know About Celiac and Gluten Sensitivity

What is Gene HLA-DQ7, and is it Related to Celiac Disease?

Sings You Have Celiac Disease


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