NCGS symptoms can include any of fatigue, headaches, joint pains, brain fog or gastrointestinal symptoms, but these are not accompanied by the small bowel damage that is characteristic of those diagnosed with coeliac disease.
In the last decade there has been an increased focus on the role of gluten causing these symptoms. This term was first used in 1970’s to describe complaints thought to be generated by the ingestion of wheat containing foods, because components within the gluten protein portion of the wheat grain were known to be the cause of coeliac disease.
However, gluten is just one element in the wheat grain. Other parts of the wheat are also being studied. The fructan component is a fermentable carbohydrate (please link this to FODMAPs) found in the carbohydrate portion of the wheat grain. Amylase trypsin inhibitors and lectins (wheat germ agglutinins), from other parts of the wheat protein, are also being studied. Each group is suggesting that the part they are studying is also capable of triggering symptoms.
There are no biomarkers to distinguish this disease, so there are no blood or histological tests that can be targeted to diagnose NCGS.
Exclusion of allergy, coeliac disease and other disorders through medical testing should be the first step, before proceeding to an elimination diet and gluten or wheat challenge.
Because symptoms appear hours or up to days after wheat or gluten has been ingested, this also suggests that other food components in the diet may be triggering the symptoms along with the gluten.
This is not a food allergy so tiny quantities of hidden gluten are generally not responsible for symptoms in most with NCGS. Many, but not all, people with NCGS can eat small irregular quantities of wheat foods.
If symptoms are tolerated, currently, research in this area indicates that there are no long-term medical complications caused by untreated NCGS or continuing to ingest small quantities of gluten or wheat foods.
Headaches, Migraines, Mood and Rashes
Although food triggers are not involved in every case of headache and migraine, there is research suggesting that some headaches and migraines may be triggered or made worse by the food chemical amine, which can be found in common migraine triggers such as red wine, chocolate, cheese, tomatoes, oranges and some dairy foods. My experience has shown that other chemicals may also be involved.
You are advised to see a Specialist doctor initially to ensure there is no underlying disease that can be treated. If this has been ruled out, an investigation to find possible dietary triggers for your symptoms could be undertaken.
Moods, sleep and skin rashes (particularly hives) may also be triggered by certain food chemicals. However, experience tells us that the trigger chemical, for the same symptom, is different in different people.
Foods containing these chemicals are removed from the diet for several weeks with the expectation that the symptoms will improve. If the symptoms do not improve the investigative protocol is stopped. If symptoms improve, foods containing each chemical or substance removed will be eaten to see if you react to it. When the testing protocol is complete you can add back foods which do not contain the chemical or substance to which you reacted. Finally, you will be guided to build back the foods which do contain the chemicals you reacted to. You need to find how much you can tolerate of these foods to give your diet more variety and freedom.
The Royal Prince Alfred Hospital Elimination Diet booklets provide advice for different levels of restriction. A consultation is required to determine what may be best for you. The elimination and challenge procedure will help find out your food triggers while maintaining a balanced diet. Your end diet limits (not totally avoids) the foods containing the substances to which you reacted.