In recent years, issues related to gluten-free diets have been gaining increasing attention. Some people encounter problems associated with its consumption, undergo tests, identify celiac disease, and eliminate gluten from their diets. Meanwhile, for others, the celiac test comes back negative, and gluten remains an integral part of their diet. But are they right? Let’s delve into this topic; in this article, we will explore various issues related to gluten. You’ve got it right; it’s not just about celiac disease.
What is Gluten?
Gluten is a protein complex present in cereal grains such as wheat, rye, barley, and oats. It consists of two main protein fractions: glutenin and gliadin. Gluten has a protein structure that imparts elasticity and flexibility to dough during baking, making it characteristic of bread and other baked goods.
However, for some people, gluten can pose problems. Individuals with celiac disease, gluten intolerance, or gluten sensitivity may experience negative reactions when consuming products containing this component.
History of the Discovery of Celiac Disease and Its Connection to Gluten
In 1888, English physician Samuel Gee described cases in children suffering from symptoms such as diarrhea, exhaustion, anemia, and developmental delays, coining the term “celiac disease.” The link between celiac disease in children and wheat consumption was suspected but not proven at the time.
In 1954, British physician John W. Paulley described villous atrophy of the intestine, a characteristic of celiac disease, in surgical samples.
The connection between celiac disease and wheat (gluten) consumption was first discovered and suggested by Dutch pediatrician Willem Dicke in 1944. During the Dutch Hunger Winter, it was observed that children with celiac disease, strictly adhering to a wheat-restricted diet due to food shortages, showed improvement. However, when the first precious load of bread was issued after the war, their condition worsened. This observation led to the idea that wheat gluten could be the cause of problems in people with celiac disease.
Dr. Dicke passed away in 1962. Although nominated for the Nobel Prize in Medicine in 1962, he did not receive it because the prize was not awarded posthumously. The Netherlands Society of Gastroenterology established an award in his honour for innovative research in this field, and Willem was the first to receive the Dicke Gold Medal.
Non-Celiac Gluten Sensitivity (NCGS)
It seemed like the end of the story. The problem was found, and the treatment for this problem, a gluten-free diet, was well-known for people with celiac disease. But this was only the beginning of the story.
People started seeking medical help with symptoms such as abdominal pain, bloating, diarrhea, or constipation, resembling celiac disease symptoms. Still, standard celiac tests returned negative results.
The term “Non-Celiac Gluten Sensitivity” (NCGS) has become more widely used in scientific literature in recent decades, and the scientific community continues to research this condition. Initially, the idea of gluten sensitivity not related to celiac disease arose from observations by physicians and patient reports.
Some early studies and observations by doctors confirmed the existence of this condition. One of the early contributions to this research field was from Dr. Alessio Fasano, an Italian immunologist and researcher in celiac disease and other digestive conditions. In 2011, he and his colleagues published a study in the “Biochimica et Biophysica Acta Molecular Basis of Disease” journal, where they first used the term “Non-Celiac Gluten Sensitivity” to describe a condition where patients experience symptoms related to gluten consumption but do not have celiac disease or wheat allergy.
Since then, numerous researchers and physicians have contributed to studying NCGS, conducting additional research, and proposing various additional criteria for diagnosis. However, this area remains a subject of debate in the medical community, and standard diagnostic methods for non-celiac gluten sensitivity are still not established.
As you can see, the issue is far from straightforward. But to this day, many people believe that having a negative celiac test allows them to return to gluten consumption. Are they right? I can say for sure: no, they are not right. And my personal experience confirms this.
My Personal Gluten Story
In 2003, my child was diagnosed with autism. At that time, doctors didn’t offer any therapies for such children, and it was officially believed that only behavioral correction could somehow improve the lives of families with such kids. Therefore, parents and specialists, often parents of autistic children themselves, took matters into their own hands and began seeking solutions.
One of the most effective ways of helping these children, according to surveys conducted by the Autism Research Institute, was a gluten-free and casein-free diet. I also started using this diet for my child. To do it properly, gluten had to be completely removed from the child’s diet at a molecular level. The simplest solution was to eliminate gluten from the child’s environment. So, I removed all gluten-containing products from our home. Thus, my entire family—myself, my husband, and my child—found themselves on a completely gluten-free diet.
Back then, I didn’t consider gluten my problem; I did it solely for my child. After 8 months, my husband and I decided to visit an Italian restaurant. We left our child with a nanny and went to the restaurant. After that, I felt that my previous issues, which had disappeared, returned suddenly and even worsened significantly. I couldn’t bear the light, my head was spinning, and I lost coordination and concentration. These symptoms had occurred before, but they had long since passed. Initially, these symptoms disappeared with an antidepressant, which I later replaced with St. John’s Wort extract and achieved a similar effect—no more aforementioned symptoms. Then I started a gluten-free diet, and after a few months, I easily gave up the herbal remedy. I didn’t even think at that time that it was related to giving up gluten. However, the symptoms spoke for themselves: the problems returned as soon as I ate gluten. For two weeks, I still experienced unpleasant symptoms, but over time, they decreased, and finally, the symptoms disappeared. I was back on a gluten-free diet, and everything was fine. However, the coordination problems were so severe that I couldn’t drive for those 2 weeks.
A year later, the same thing happened again. My husband wanted to visit an Italian restaurant again. I still didn’t believe that gluten was causing me problems. I thought that excluding gluten was somehow related to the body no longer producing the necessary enzymes. Note: my husband also hadn’t eaten gluten all that time, but he didn’t experience any problems after visiting the restaurant. However, I still didn’t want to admit that I could never eat gluten again. I had enzymes for gluten digestion, which were used if my child accidentally ate something with gluten at school, for example, if he ate at a table with bread crumbs. Before going to the restaurant, I took a large dose of enzymes, 4 capsules. I also ate much less gluten than a year before, but the symptoms recurred. By the third year, I decided not to go to the restaurant on my own.
I always loved bread, but what I experienced was so terrible that it wasn’t worth it. Besides, all my life, I had memory problems, concentration issues, and many other health problems. After giving up gluten, I was able to attain a Doctor of Naturopathic Medicine education in English and leave behind all the health issues that had been haunting me since childhood. Most of them were related to the gastrointestinal tract. My quality of life improved so much that if I had known earlier that all these were the result of my gluten issues, I would have given it up years ago. I’ve been gluten-free for almost 20 years now and feel better than when I was significantly younger but still ate gluten.
In 2006, completely by chance, I realized that there was another problem with gluten, but it wasn’t celiac disease. I was lucky that I experienced symptoms immediately after eating gluten. However, this doesn’t happen to everyone; often, symptoms are delayed, and people don’t see a direct connection with gluten. I forgot to mention: no test has ever confirmed the presence of celiac disease in me. But personally, I don’t need it. My quality of life deteriorates so much if I eat gluten that if I can’t find gluten-free food, I prefer not to eat anything at all. My husband doesn’t have such problems, although he also adheres to a gluten-free diet. After all, there’s no gluten in our house.
Now, let’s delve into what celiac disease is and what other conditions are associated with gluten, especially with bakery products in general.
What is Celiac Disease?
Celiac Disease
- Description: An immune disorder caused by the impact of gluten, leading to damage to the mucous membrane of the small intestine. The destruction of the intestinal villi results in a significant reduction in the surface area of the intestinal mucosa in contact with absorbable food.
- Mechanism: Autoimmune response, where IgA and IgG antibodies are directed against tissues after exposure to gluten.
- Symptoms: Diarrhea, constipation, flatulence, abdominal bloating, and pain, fatigue.
- Diagnosis: Blood tests for antibodies (anti-tTG, anti-EMA), biopsy of the small intestine. However, if IgA antibodies are low, the test will return negative even if celiac disease is present. If the test for IgA antibodies is not ordered along with antibodies specific to celiac disease, a negative result may be falsely negative, i.e., incorrect.
- Possible Associated Issues:
- Immune Reactions: Inflammation, intestinal damage, autoimmune processes in the body.
- Nutrients: Deficiency in iron, vitamins (especially B12 and folate), and minerals.
- Skin and Nerves: Rashes, itching, psoriasis, headaches, neurological symptoms.
- Mental Health: Immune reactions and inflammation can impact the nervous system, causing psychological symptoms. Vitamin deficiency, especially B12 and folic acid, can affect mental health.
- Weight: Weight loss.
- Other Diseases: Thyroid problems (e.g., Hashimoto’s disease), rheumatoid arthritis, lupus, osteoporosis, dental issues.
Non-Celiac Gluten Intolerance and Conditions Arising from This Problem
When a doctor tests you for celiac disease and the tests come back negative, it means the absence of celiac disease but not the absence of gluten-related issues. Here are several other conditions now associated with wheat consumption:
Gluten Intolerance:
- Description: Similar to celiac disease but without inflammation and tissue damage.
- Mechanism: Impaired gluten tolerance is not associated with an immune response.
- Symptoms: Abdominal pain, diarrhea, bloating.
- Diagnosis: Usually done by excluding other conditions, including celiac disease.
- Possible Associated Issues:
- Immune Problems: Some studies suggest a link between gluten intolerance and autoimmune diseases such as Hashimoto’s disease, Rheumatoid Arthritis, and Systemic Lupus Erythematosus.
- Nutrients: Iron deficiency, vitamin and mineral deficiency.
- Skin and Muscles: Rashes and itching, muscle pains, joint pains.
- Mental Health: Abdominal pain, diarrhea, and nutritional deficiencies can cause stress and anxiety.
- Weight: Overweight or weight loss.
Gluten Sensitivity:
- Description: Symptoms resembling celiac disease but without a confirmed celiac disease or gluten intolerance diagnosis. Also, lacks the typical inflammation seen in celiac disease.
- Mechanism: Mechanisms of sensitivity are not always clear, and this condition is still debated.
- Symptoms: Varied, including fatigue, abdominal pain, and headaches.
- Diagnosis: Based on the absence of celiac disease and other allergies, there are no standard tests.
- Possible Associated Issues:
- Immune Problems: Some studies suggest a link between gluten sensitivity and autoimmune diseases such as Hashimoto’s disease, Rheumatoid Arthritis, and Systemic Lupus Erythematosus.
- Mental Health: Diverse symptoms, including fatigue and headaches, can impact the overall well-being of the patient and cause anxiety.
- Individual Manifestations: Various symptoms, including fatigue, headaches, and stomach issues.
Wheat Allergy:
- Description: An allergic reaction to proteins in wheat.
- Mechanism: Immune response, usually IgE antibodies.
- Symptoms: Hives, itching, throat swelling, breathing problems.
- Diagnosis: Allergy tests, including skin and blood tests.
- Possible Associated Issues:
- GI: Vomiting, diarrhea, abdominal pain.
Wheat Atopy:
- Description: Allergic reaction to wheat with different symptoms.
- Mechanism: Various allergic mechanisms, sometimes unclear.
- Symptoms: Diverse, including allergic skin manifestations, and respiratory issues.
- Diagnosis: Allergy tests and symptom examination.
- Possible Associated Issues:
- Types of Atopy: Eczema, asthma, allergic rhinitis.
Irritable Bowel Syndrome (IBS) and Non-Celiac Gluten Sensitivity (NCGS):
- Description: People with IBS or no known allergies may experience improvement without gluten in their diet.
- Mechanism: This may be related to sensitivity to gluten fractions or other factors.
- Symptoms: IBS symptoms, such as abdominal pain, changes in stool, and bloating.
- Diagnosis: IBS diagnosis is based on symptoms, and gluten elimination can be a trial treatment.
- Possible Associated Issues:
- Mental Health: Persistent abdominal pain and changes in stool can affect emotional well-being and cause depression and anxiety.
Gluten Issues and Genetics
It is also important to note that gluten-related problems, such as celiac disease, have a distinctly pronounced genetic component. Individuals with specific genetic predispositions are more susceptible to the development of celiac disease following gluten exposure. For instance, the presence of certain variants of the HLA-DQ2 and HLA-DQ8 genes increases the risk of developing this condition.
However, genetics can also influence other gluten-related issues, such as gluten intolerance and sensitivity. Genetics plays a pivotal role in understanding why some individuals are more prone to these disorders than others.
Testing for Non-Celiac Gluten Sensitivity:
Testing for non-celiac gluten sensitivity (NCGS) is a relatively complex process, and there are currently no universal diagnostic standards. The diagnosis of NCGS is often made by exclusion, and the process may include the following steps:
- Exclusion of Celiac Disease and Wheat Allergy: Initially, tests for celiac disease are conducted to ensure the absence of this condition. Wheat allergy is also checked.
- Elimination Diet: A special diet excluding gluten-containing products is implemented. If symptoms improve over a specified period, it may suggest NCGS. Typically, this period ranges from 3 to 6 months.
- Provocation Test: A provocation test is then conducted, reintroducing gluten in a large amount and immediately. If symptoms return, it supports the NCGS diagnosis.
- Objective Markers: Research is ongoing to find biomarkers that could aid in NCGS diagnosis, such as changes in cytokine levels and inflammation markers.
- Additional Tests: Some doctors may conduct additional tests, like IgG antibodies against gluten, although the effectiveness of these tests remains a subject of debate in the medical community.
If you recall my story, I underwent an exclusion diet and subsequently conducted a provocation test. It’s important to note that the accuracy of tests and the diagnosis of Non-Celiac Gluten Sensitivity (NCGS) still raise questions, and many aspects of this condition remain insufficiently understood. Therefore, the diagnostic process usually requires careful analysis and observation, as well as collaboration between the doctor and the patient. Full patient awareness of the variety of issues related to gluten is crucial, especially when celiac disease is not identified. Unfortunately, patients often think that a negative test for celiac disease means that their problems are not related to gluten.
What is Flour Enrichment?
We could have concluded the discussion on gluten-related conditions if it were not for the enrichment of gluten-containing flour with vitamins and minerals.
Flour enrichment is a process in which vitamins and minerals, such as folic acid, iron, zinc, copper, thiamine, and riboflavin, are added to it. This is done to improve the nutritional value of products, especially considering that bread and other baked goods are a crucial part of many people’s diets. The initial reasoning was that flour now lacks bran, which is well removed from it. Bran contains fibre, vitamins, and minerals. Therefore, it was decided to enrich flour.
And everything would have been fine if bran itself had been added to the flour. However, artificial compounds started to be mixed into the flour. Folic acid is of particular concern to many scientists. It is not found in nature; it is a foreign compound for us. Natural compounds are methyl folate and folinic acid, which are easily absorbed by the body. However, folic acid has a different metabolism in our bodies.
How can flour enrichment affect health?
Positive Aspects:
- Prevention of Deficiencies: Enriching flour helps prevent deficiencies in essential nutrients. For example, the folic acid added to flour plays a key role in preventing neural tube defects in newborns.
Potential Risks:
- Accumulation of Unmetabolized Folic Acid: The intake of 200 micrograms of folic acid in one meal cannot be metabolized by any person. And 100 grams of enriched flour in Canada contains 150 micrograms of folic acid! This leads to the problem of unmetabolized folic acid. More details on this issue are discussed in this article:
- Masking Deficiencies: Folic acid added to enriched flour can mask a deficiency of vitamin B12. A high level of folic acid can compensate for anemic changes associated with a B12 deficiency without improving the deficiency itself. With a high level of folic acid, blood tests, such as the overall B12 level, can be distorted because folic acid masks the presence of a B12 deficiency.
- Imbalance in Nutrient Consumption: Enriched flour disrupts the balance in nutrient consumption. People usually do not think that all bakery products are essentially naturopathic supplements. Some people do not eat gluten-containing products at all, while others build their entire diet on them.
- Higher Cancer Risk: Some studies suggest that high doses of folic acid, obtained through gluten-containing bakery products and supplements, may increase the risk of certain types of cancer, especially in people who already have precancerous conditions or cancerous changes.
Essentially, flour enrichment is designed to protect those who do not know about their pregnancy early on and do not take the necessary vitamins for this reason, but it creates problems for all other segments of the population.
Conclusion
In conclusion, it can be noted that the intricate interplay between gluten and various diseases reveals a multifaceted landscape characterized by the complex interaction of genetics, immune responses, and dietary factors. Celiac disease stands out as a clearly defined immune-mediated condition, triggered by gluten exposure, and marked by severe intestinal damage. However, beyond celiac disease, the spectrum of gluten-related disorders expands, encompassing non-celiac gluten sensitivity, wheat allergies, and the impact of flour fortification.
While flour fortification is intended to enrich food products with vitamins and minerals, it introduces potential risks and challenges. The accumulation of unmetabolized folic acid, masking deficiencies in vitamin B12, and imbalances in nutrient consumption require careful consideration.
Understanding the nuances of gluten-related issues demands a comprehensive approach to diagnosis and treatment. The uncertainty regarding the accuracy of testing for non-celiac gluten sensitivity underscores the need for thorough analysis, attentive observation, and collaborative efforts between healthcare professionals and patients. Patient awareness of the diverse problems associated with gluten is crucial, especially in the presence of negative celiac test results. Unfortunately, the misconception that a negative celiac test excludes gluten-related issues is widespread.