Different Types of Gluten Intolerance: It’s Not Just Celiac

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What is Gluten

Protein found in: all forms of wheat (including kamut, spelt, emmer, einkorn, faro, durum, bulgur), rye, triticale, and barley. Often oats are included in the list.[1]

The Variety of Reactions to Gluten

Commonly known reactions are intestinal distress including: stomachache, sharp pains in the stomach, diarrhea, and gas.

Less commonly known reactions can be neurological (brain fog, spaciness, balance issues, memory issues; fatigue), joint pain, anemia, infertility, skin rash and/or a feeling of fire under the skin, thyroid disease, osteoporosis, oral (dental enamel defects, canker sores or ulcers in the mouth, dry mouth syndrome, atrophic glossitis[2]).

Medical Diagnosis

Doctors are taught that celiac (and related disorders) are so rare that they will never encounter a person who has it. So, they dismiss patients who speculate that they react to gluten. It has been estimated that it takes 6-10 years from the start of symptoms to the actual diagnosis of gluten-intolerance. Luckily, this is getting better.

Self Diagnosis

Many people who react to gluten-containing grains don’t have an official diagnosis from a doctor. So, they describe their situation in terms they understand. They say things like “I am gluten intolerant.” Or “I have a gluten allergy.” Or “I am allergic to wheat.” What they are trying to convey is that they react to gluten in some way.

Reacting to Gluten and Sometimes Confusing Eating Patterns

Reactions can be anything from asymptomatic, to mildly uncomfortable, to very uncomfortable, to life threatening.

Sometimes, people with gluten intolerance feel the effects only after eating a large amount of gluten. Often these are the people you see insisting on a gluten-free meal and then eating a piece of cake for dessert. It is not that they don’t react to gluten, it is that they have figured out much gluten will make them feel bad. This is also the explanation for people who claim that they can eat gluten without symptoms in Europe. Many forms of wheat used in Europe are older types of wheat that contain less gluten than modern wheat.

It is important to note that if one reacts to gluten, not having symptoms when they eat it doesn’t mean it’s not doing damage to their body. But, that’s their business, not yours.

Forms of Gluten-Intolerance/Reacting to Gluten-Containing Grains

1. Celiac (currently diagnosed at 1% of US population, 1 in 133 ppl, 3 million[1])
  1. Autoimmune condition where the digestion of gluten proteins creates antibodies that attack the small intestine. Over time, the villi in the small intestine flatten out and make it difficult for the person to absorb nutrients
  2. It is estimated that 83% of people with celiac are undiagnosed or misdiagnosed.[3]
2. Dermatitis Herpetiformis (DH), aka Duhring’s Disease (15%-25% of those with celiac[4])
  1. DH is a form of celiac. In DH, the antibodies from ingesting gluten attack the skin vs. the intestine[5]
3. Non-Celiac Gluten Sensitivity (estimated 6%-7% of US population—20 million[6])
  1. could tie into #6
  2. People who do not have Celiac but who have similar symptoms after eating gluten-containing grains
4. Gluten Ataxia
  1. Can be related to both celiac and non-celiac gluten sensitivity[7]
  2. Gluten-related brain and nerve disorder that occurs when the antibodies to gluten attack the brain and central nervous system, specifically the cerebellum, which is responsible for walking, running, posture, balance, and speech. If left long enough, the damage can become permanent or cerebellar atrophy can occur. [8]
5. Wheat Allergy (.3% of US population)
  1. Allergic reaction to one of the 4 proteins in wheat: albumin, globulin, gliadin and gluten
  2. Can be life-threatening
6. Sensitivity to Something in Gluten-Containing Grains That Isn’t Gluten (possibly amylase-trypsin inhibitors–ATIs. ATIs represent about 4 percent of wheat proteins[9])
  1. ATI and gluten produce similar but distinct reactions in the human body
  2. “ATIs from wheat activate specific types of immune cells in the gut and other tissues,” “thereby potentially worsening the symptoms of pre-existing inflammatory illnesses.”[10] (see #8)
7. Oral Allergy Syndrome (OAS), aka Food Pollen Syndrome
  1. Environmental allergy (not a food allergy) related to the pollen protein signatures of uncooked fruits, vegetables, nuts, spices, and herbs.
  2. Mainly linked to tree (especially birch), grass, and ragweed pollen
  3. Wheat, rye, and barley are all grasses
8. Other Auto-Immune Conditions That Call For a Gluten-Free Diet
  1. Include Hashimoto’s disease, Crohn’s disease, Kidney disease
- Footnotes
  1. [1] Oats contain a prolamin called avenin that is similar to the prolamin in gluten called gliadin. Therefore, some people who react to gluten also react to the oats themselves (not just non-gluten-free oats).[2] https://www.niddk.nih.gov/health-information/digestive-diseases/dental-enamel-defects-celiac-disease[3] https://www.beyondceliac.org/celiac-disease/facts-and-figures/[4] https://www.niddk.nih.gov/health-information/digestive-diseases/dermatitis-herpetiformis[5] https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/[6] https://www.verywellhealth.com/how-many-people-have-gluten-sensitivity-562965[7] https://www.beyondceliac.org/celiac-disease/related-conditions/gluten-ataxia/[8] https://www.medicalnewstoday.com/articles/320730.php[9] http://mentalfloss.com/article/87511/scientists-find-non-gluten-cause-wheat-sensitivity[10] http://mentalfloss.com/article/87511/scientists-find-non-gluten-cause-wheat-sensitivity
  2. Clip art from: https://olddesignshop.com/2017/10/free-vintage-clip-art-wheat-illustration/