Celiac disease. Man does not live by bread alone. Symptoms, causes and treatment of celiac disease in children - How common is this disease

If you have celiac disease, you should not eat foods made with wheat flour.© CC0 Public Domain

The quality of life of patients with celiac disease directly depends on the specific comfortable environment. This is not a luxury, but a necessity. As for the creation of this environment, then, as often happens, the rescue of drowning people became the work of the drowning people themselves. That is why the society for celiac disease patients “Emilia” has been operating in St. Petersburg for 20 years. Behind its creation is the personal story of its leader, Irena Romanovskaya.

“Emilia is the name of my daughter, who had serious health problems. It took her a long time to get a diagnosis. Then it was suggested that she had celiac disease. But in 1995, this diagnosis was little known. Almost no one talked about him. One of the doctors suggested that the child follow a gluten-free diet. After this my daughter felt much better. We were tested for celiac disease again, and then I met the doctor Maria Revnova, who dealt with this problem, and the parents of children who had the same diagnosis. We realized that we need to create a comfortable environment for children. And for 20 years we did this. In bureaucratic language this is called “creating an adaptation system,” said the head of “Emilia” and the National Association “Gluten-Free Life” Irena Romanovskaya.

Patients with celiac disease cannot eat foods with gluten (gluten) and related proteins (avenin, hordein, etc.). Products containing wheat, rye and barley are prohibited. Oats are gluten-free, but due to processing and transportation technology, the grain may contain traces of wheat, rye or barley. Therefore, patients with celiac disease are advised to use only specially prepared, labeled oat-based products. The disease is congenital and is inherited.

What happens if you don't follow the diet? The child becomes lethargic, pale, loses weight and appetite. Dystrophy gradually develops. Children acquire a typical appearance for celiac disease: severe exhaustion, dull eyes, bright mucous membranes, and a huge belly. Sometimes the legs swell, and spontaneous bone fractures are common. Pseudoascites (fluid accumulation in intestinal loops) is detected. Then there are symptoms of multivitamin deficiency (dry skin, stomatitis, dystrophy of teeth, nails, hair, and others). With a long course of the disease, the child grows poorly. The little patient suffers not only physically, but also mentally. He becomes withdrawn, excitable, and has mood swings.

So, diet is necessary. Flour is excluded from the diet. It would seem like just one ingredient. But it turns out that wheat flour and wheat products are present almost everywhere. In addition, the child comes to normal kindergarten and sees that everyone is eating bread, semolina porridge and pies. Then the same thing happens at school, in sanatoriums, in children's camps, in hospitals, and so on. And he has to eat home-cooked food and constantly think about finding suitable products. The people who decided to help him need to make sure that he stops constantly thinking about food. "Emilia" managed to create a comfortable environment for patients with celiac disease. I would like to receive information.

“If a person in St. Petersburg has symptoms of celiac disease, then we already know exactly where to go and what tests to take. Celiac disease is a disease in which information comes first, psychology comes second, and nutrition comes third. Psychology - because following any diet is serious work on yourself,” says Romanovskaya.

Children with celiac disease do not have a disability, but at the same time receive an annual and monthly allowance and 21 days of free vacation near Luga (each trip costs 42 thousand rubles). This is provided to all children with celiac disease, not just those who are members of the Emilia organization. For the fact that a child does not eat at school, he receives compensation - more than 2 thousand rubles per month. Gluten-free groups are organized in kindergartens. It was interested social activists who achieved all this from the city authorities.

The older a person gets, the more consciously he should approach his characteristics. This is why schools do not create separate classes for children with gluten intolerance. A seven-year-old child should be prepared by his parents to make independent food choices.

Over the past 20 years, at least in St. Petersburg, the attitude of society towards the problem has changed. A gluten-free diet no longer seems like a disaster to many - this applies to both patients and their parents. In many Russian cities, a person with celiac disease will have difficulty finding a catering establishment. And in St. Petersburg you can go to almost any cafe, any restaurant, ask for gluten-free food, and even if it is not available, the employees of the establishment at least know what it is.

IN Orthodox Church in St. Petersburg there is also the possibility of gluten-free Communion - only with Blood. A special silver bowl was purchased for this. Communion begins with parishioners who are gluten intolerant. Only after that do the rest of the parishioners receive communion. This happens once a month in the only church - in the courtyard of the Alexander-Svirsky Monastery not far from the Ulitsa Dybenko metro station.

In stores, packages of products for people with celiac disease should have an emblem - a crossed out ear.

“Now in Russia, thanks to the Crossed Ear project, there are 100% proven gluten-free products. This means that the production must have tested input raw materials, there must be a dedicated line, or a separate workshop,” explains Romanovskaya.

According to her, the organization cooperates with manufacturers and sends its auditor to them. The latter goes to factories and checks not only the cleanliness of product production, but also how specially trained personnel work, how gluten-free products are stored, how their transportation and delivery are organized. Indeed, unfortunately, contamination of natural gluten-free cereals can occur at any stage - from growing and harvesting to production. Therefore, there can be gluten-free buckwheat flour and “contaminated” buckwheat flour. And the “crossed out ear” is placed only on the first one.

“We openly talk about guaranteed products and responsible producers on the Crossed Out Ear project website.” It is very important that the management of companies producing gluten-free products meets us halfway, listens to all our requests, and promptly responds to requests and complaints from patients,” the expert adds.

All over the world, patients are guided by public organizations. These structures participate in scientific research when necessary. “Emilia” follows the same path. Its participants organize conferences for doctors and invite doctors to give lectures to parents of patients. First of all, new participants come to the “Diet” school, where they are introduced to the situation by doctors, nutritionists, and a psychologist also works with them. That is, people are immersed in this environment and shown that their problems can be solved. Doctors now often tell parents about “Emilia” immediately after the child is diagnosed.

However, even in St. Petersburg, not everything is so rosy. Many doctors still believe that such a disease - celiac disease - does not exist. And now many clinics in our city remove this diagnosis and diagnose gluten allergy. But the fact is that if it is an allergy, then the patient is not entitled to benefits. Three years ago, the clinic that dealt with celiac disease closed. It has become more difficult to diagnose the disease and refer the child to the hospital. Today, this is done by the Consultative and Diagnostic Center No. 2 on Gladkova Street. This is urban state-financed organization, where the child’s referral goes for free.

Manufacturers do not always behave honestly. There are companies that produce gluten-free products that contain wheat flour. On the website and in groups in in social networks“Emilia” has a section “Caution, Gluten!”, which identifies companies that behave in a similar way. Oddly enough, the entrepreneurs themselves are not particularly concerned about this.

“We would, of course, like to see the range of gluten-free products expand. So that it includes dairy products, confectionery, and sausages. That’s why we contacted more than 200 companies with a request for cooperation. Most of these companies did not respond to our letters. Some say that it is very expensive for them - without even asking us how much it costs, how it is done, and so on. That is, they produce products on which they write “gluten-free,” but they categorically do not want to license them with a “crossed out ear.” Our consumers say they are probably afraid of control. Audit, testing of products in an accredited laboratory - not every enterprise wants to have this level of control and responsibility,” says Irena Romanovskaya.

Unfortunately, official statistics There is no celiac disease in the city. But over 20 years, about 5,000 families have passed through the Emilia organization. Modern world population studies have shown that the gene responsible for the predisposition to celiac disease is quite common, and the disease itself is present in approximately 0.5-1% of the population - in St. Petersburg this would be 25-50 thousand people. But appropriate diagnostics are often not carried out.

Outwardly, a person with celiac disease, if he follows all the instructions, is no different from ordinary people. But we need to tell everyone about celiac disease so that people who suspect this disease will think about it. If this diagnosis is confirmed and a person refuses gluten, his life becomes as easy as possible.

As Irena Romanovskaya explains, “there were a lot of situations when people learned about celiac disease and the Emilia organization through word of mouth, but sometimes they found out very late.” But no matter what age a person goes on this diet, if he sticks to it, it will have a positive effect on his well-being. Symptoms of celiac disease, as you know, are different - muscle pain, bone pain, headaches, skin manifestations and others. Even ZPR can be a symptom that you need to go get tested for celiac disease. As for infants, even too frequent bowel movements or the fact that newly sprouted teeth are crumbling after the introduction of complementary foods is already a reason to check for celiac disease.

Igor Lunev

"Rosbalt" presents the project "Everyone is included!", designed to show that disability is a problem that affects each of us. And the moral state of society is determined by how it treats people with special needs.

The project was implemented using a grant from St. Petersburg.

Medical and social examination and disability in celiac disease

CELIACIA (celiac disease, Huy-Herter-Heubner disease, non-tropical sprue) is a disease caused by intolerance to the proteins of certain cereals (density), toxic and then trophic damage to the mucous membrane small intestine, characterized by secondary deficiency conditions and the effectiveness of a gluten-free diet.

Epidemiology: the frequency in the population ranges from 1:300 to 1:3000; It is assumed that the actual incidence of celiac disease is higher than available data due to imperfect diagnostic methods.

Etiology and pathogenesis. It is assumed that the disease is hereditary: there are no specific enzymes - proteolytic enzymes and peptidases in the small intestine that break down the gluten of cereals (wheat, rye, oats); this leads to the accumulation of gluten and its metabolites in the intestine, has a toxic effect on the cells of the small intestine, as a result of which the antigenic structure of epithelial cells changes, AT is produced to altered antigens, and the autoimmune mechanism is triggered. The disease may also occur under the influence of adenovirus type 12, which is similar to one of the components of gluten - gliadin. The autoimmune nature of inflammation of the mucous membrane of the small intestine leads to atrophy, which, in turn, leads to a decrease in the absorption surface, a decrease in the production of enterohormones (secretin and cholecystokinin) and the proximal part of the small intestine; reduced stimulation of the gallbladder and pancreas leads to disruption of the cavity digestion of proteins and fats. Damage to enterocytes is accompanied by a decrease in the hydrolysis of small peptides and disaccharides in the ciliary zone, membrane transport of amino acids is disrupted, soluble vitamins, monosaccharides, sodium, potassium, the absorption of water in the duodenum is disrupted, which leads to diarrhea and polydeficiency syndrome. Atrophy of the mucous membrane is morphologically manifested by a decrease in the thickness of the glycocalyx, flattening or disappearance of villi, enlargement and elongation of crypts; in the lamina propria, the number of cells—plasmocytes—producing immunoglobulins of all classes increases, and autoATs (IgA, IgG) to gliadin and endomysium are also detected.

Clinical picture. The disease can appear at any age: in adults, usually after 30 years, in children - after introducing gluten-containing foods into the diet, i.e., at 9-24 months of life. Clinical manifestations are polymorphic and are accompanied by the involvement of many organs and systems in the process. From the digestive tract, symptoms of malabsorption and maldigestion develop: nausea, vomiting, severe pain in the abdomen, alternating diarrhea and constipation, hepatomegaly. Noted characteristic change stool: it becomes rapid, foamy, profuse, with unpleasant smell, somewhat acholic, with a characteristic greasy shine(steatorrhea). The child loses his appetite, and there is a gradual lag in physical and then psychomotor development. Pathological changes stomach and intestines lead to skin damage ( atopic dermatitis, dry skin, angular stomatitis, dystrophic changes teeth, nails, hair), bones (severe pain in the bones, spine, spontaneous fractures, rachitic deformities of the limbs, growth retardation); development of IDA; changes nervous system(paresthesia with loss of sensitivity, ataxia, partial demyelination of the spinal cord, convulsions, tetany); dysfunction endocrine system- signs of adrenal cortex insufficiency (weakness, decreased blood pressure, skin hyperpigmentation); changes in the blood coagulation system (gastrointestinal, nasal, renal bleeding). The psychological status of the child also changes: children become irritable, gloomy, capricious, selfish ( characteristic pose- the child sits motionless on the bed, cross-legged, and angrily watches those around him from under his brows). The course of the disease is undulating, progressive, and a secondary infection may occur, aggravating the child’s condition. There is a connection with others autoimmune diseases: diabetes mellitus type I, autoimmune thyroiditis, nonspecific ulcerative colitis, fibrosing alveolitis, etc.

Complications: secondary infection (usually meningococcal and pneumococcal), high risk development of tumors - lymphomas (9-19%).

Laboratory and instrumental methods confirming the diagnosis:
1) stool examination - coprogram in dynamics (steatorrhea, increased excretion of fatty acids);
2) duodenojeunoscopy (detection of signs of mucosal atrophy);
3) biopsy of the mucous membrane of the small intestine (histological confirmation of atrophic changes);
4) determination of antigliadin AT and AT to endomysium;
5) determination of transpeptidase activity in the blood.

Treatment: therapeutic nutrition with the exclusion of gluten-containing products from the diet; symptomatic treatment- enzymes, vitamins, iron and other microelements.

Forecast at early diagnosis and proper treatment is favorable, patients are generally socially adapted.

Disability criteria: deep violations metabolic processes, a delay in physical and psychomotor development of more than 2 epicrisis periods that cannot be relieved within 6 months of treatment.

Rehabilitation: medical rehabilitation during periods of exacerbations, psychological, pedagogical and professional rehabilitation during remission of the disease; Exercise therapy, massage.

Unfortunately, not all diseases are diagnosed at the birth of a child and in the first months of his life. Sometimes parents are sure that they are raising a healthy baby - well, there are problems with stool, and they are not gaining weight well. But these are frequent companions of infancy! However, digestive problems can be caused by intolerance to gluten, a protein found in wheat, rye and barley. And then the aphorism in the title of the article is filled with a new, not at all metaphorical meaning...

Many children are gluten intolerant at the beginning of complementary feeding. Therefore, pediatricians recommend giving the baby the so-called up to one year old. Gluten-free cereals - rice, buckwheat, corn. As a rule, as the child grows older, his digestive and enzymatic systems mature, and the problem goes away on its own. However, in some children this intolerance becomes a disease. With celiac disease—that’s the name of this disease—there should be no wheat, rye, barley or products containing these grains on the table. But the most important thing is that a gluten-free diet is for life.

What is celiac disease?
Celiac disease
also known as celiac sprue, non-tropical sprue, gluten sensitive enteropathy. Medical reference books define celiac disease as a chronic disabling disease characterized by damage to the mucous membrane of the small intestine gluten free*(or rather his integral part gliadin) - vegetable protein, gluten, which is found in the main types of cereals. Intolerance to this protein causes a chronic immune inflammatory reaction, leading to damage to the villi in the small intestine, resulting in a syndrome of impaired intestinal absorption (malabsorption).

If the disease is not diagnosed on time, with prolonged exposure to gluten on the immune system of a sensitive person, its disorders develop with damage to other organs - autoimmune and oncological diseases.
The most insidious feature of this incurable disease is that it can be detected at any age. Often, neither parents nor doctors realize that their child has celiac disease. Let's take a real case as an example.
“My son has had problems with bowel movements since he was six months old. poor appetite, constantly bloated stomach. I have always had difficulties gaining weight - at six years old I weigh only 14 kg. with a height of 110 cm. At the children's clinic we were diagnosed with rickets. And only six months ago, after going to a gastroenterologist and conducting tests, we were diagnosed with celiac disease.”
The first thoughts of all parents whose children have been diagnosed with this disease are usually the same: “What kind of disease is this? How to live with her? Can she be cured? Now this information is not difficult to find - it periodically appears in parenting magazines, as well as on the Internet. After all, this disease, unfortunately, is not so rare - the incidence of celiac disease in Europe is 1:200-1:300 people. This disease is more common than previously thought - according to recent data, up to 1% of the population suffers from some form of celiac disease. Experts say that for every identified case in Europe, there are from 7 to 10 undetected ones.
In Russia, celiac disease is still considered rare disease. This point of view is explained by the difficulties of diagnosis. Application of relevant research in Lately made it possible to identify both classical and latent (latent) forms of this disease in many patients.

How can you tell if your child has celiac disease? Symptoms and diagnosis
This disease was characterized back in 1888 - at that time Samuel Gee described in detail the clinical features of celiac disease. And in 1921, Howland first recommended excluding complex carbohydrates from the diet of children with celiac disease.
Various symptoms may indicate celiac disease. Typical ones include: abdominal pain, diarrhea or persistent constipation, loss of strength, bloating and (or) increase in abdominal circumference, change in appetite (from complete absence to sharp increase), nausea and vomiting, lag in weight and height indicators (primarily in children), bone pain, spontaneous fractures, aggressive behavior, isolation, apathy, depressive states, itchy skin, allergic lesions of the skin and respiratory organs, frequent viral diseases, lethargy, fatigue, anemia, osteoporosis, lack of vitamins and minerals, lactose intolerance, nosebleeds or other bleeding.

The disease affects both sexes and can begin at any age, from infancy (as soon as grains are introduced into the child’s diet) to old age (even among those who eat grain products constantly). To start celiac disease, three components are needed: eating gluten-containing grains, genetic predisposition and what is called “ trigger factor" Anything can be a “trigger factor”—excessive consumption of wheat, serious emotional stress, physical or pathological effects (pregnancy, surgery, viral infection) and so on. The role and nature of action of this mechanism have not yet been precisely established, just as the exact algorithm (pathogenesis) of the development of the disease is unknown.
Recognition of celiac disease is often difficult because some of its symptoms are similar to those of other diseases, including irritable bowel syndrome, ulcerative colitis, intestinal diverticulosis, intestinal infections, chronic fatigue, depression.
Special studies have found that people with celiac disease have levels of certain antibodies in their blood that exceed normal indicators. These antibodies are produced by the immune system against substances that the body perceives as threatening its condition. Thus, to diagnose celiac disease, you need to check the level of antibodies to gluten in the blood (these are antigliadin, antiendomysial and antireticulin antibodies).
If symptoms and laboratory findings make it likely that you have celiac disease, your doctor may remove a tiny piece of tissue from the small intestine to check whether the intestinal villi are damaged. This is done during a procedure called a biopsy: a long, thin tube (endoscope) is inserted through the mouth and stomach into the small intestine, and then the desired tissue sample is removed using an instrument passed through the endoscope. Small bowel biopsy is the most The best way detection of celiac disease.

Disabled or healthy child?
Do the parents of a child suffering from celiac disease have the right to apply for disability? Theoretically, yes, because even the official definition of celiac disease calls it a “disabling disease.” Previously, a child diagnosed with celiac disease received disabled status for up to 5 years. And any parent understands that what is important here is the level of social support that the state provides to a child whose disease can only be treated in one way - an expensive gluten-free diet. However, the criteria for disability have now changed. They are determined not so much by the child’s illness as by the limitation of his life activity.
Indeed, if celiac disease is not detected in a timely manner, it can lead to the development of a whole “bouquet” of diseases, which will entail restriction of the child’s life activities. In foreign medical literature, celiac disease is called the “great mime”, since its manifestations and complications are varied and depend on the individual characteristics of the body.
Thus, with a long course of unrecognized celiac disease due to prolonged intoxication of the body with gluten, severe secondary immune disorders begin: diabetes mellitus, delay mental development, chronic inflammation of the liver, joint diseases, damage thyroid gland, stomatitis, intestinal ulcers, oral tumors and gastrointestinal tract, chronic temperature conditions, infertility and gynecological diseases, epilepsy and schizophrenia. Celiac disease in many cases causes not only decreased ability to work and disability, but also oncological diseases with a high degree of lethality.

However, by following a strict diet, all these consequences can be avoided. Fortunately, there are no restrictions on life activity - the child grows and develops in the same way as his peers. This means that he is not entitled to disability, despite the need for a lifelong expensive diet.
Here's what the mother of a child with celiac disease says: “But they didn’t give us disability. They said it was a healthy child. Of course, we follow a diet, play sports, study at a specialized school, and even look cool. It doesn’t matter, apparently, that our lungs are working at 64% capacity, we have a history of asthma... And, you know, I decided that means we are healthy and will break through on our own!”

Another mother, raising a three-year-old daughter with celiac disease, says this: “It is important how you treat celiac disease. Disease? For us - no!!! Lifestyle, and a healthy one? For us - YES!!! My subjective opinion is that our children are not SICK! They are healthy! There are a lot serious illnesses, in which children cannot live a full life, run and play with peers, play sports, dance. And our children live like everyone else, they make us happy, all the doors in this world are open for them. And we should be happy."

How to treat?
The only method of treating celiac disease is the complete and lifelong exclusion of gluten from entering the patient’s body, including with medications.

Throughout his life - if a person is interested in its long and prosperous course - he will have to follow a gluten-free diet. If there is no improvement, doctors prescribe drug treatment depending on the severity of the condition (including anabolic hormones, enzyme preparations, glucocorticoid therapy).
Perhaps the main problem for parents is explaining to a child with celiac disease the need to follow a diet and instilling in him a conscious attitude towards this situation. The only true way to this is to talk “like an adult” (regardless of the child’s age). Practice has shown that children perceive lisping and persuasion as a game. Imagine, for example, this situation - a mother says to her baby: “You can’t eat this. You have special, magical food.” And when a child is treated to something tasty in the absence of his parents, he may ask: “Is this magic candy?” And here it is, a trap! Of course, an adult who wants to pamper and please a child will answer “yes.” Therefore, the main task of parents is to try to prevent such situations.
There is only one way out: to convince the child that dieting is not a game, but a vital necessity. Understanding the need for a diet - as a way to live and not experience pain - children remember “allowed” and “forbidden” foods and, as a rule, are not mistaken.

Personal experience of parents raising children with celiac disease shows that children, as a rule, have a reasonable and responsible attitude towards diet therapy, perceiving it as the norm and a way of life. Oddly enough, children with celiac disease have much more difficulty explaining to other people - adults and peers - why they have to give up certain foods. Often, others consider the need to follow a diet to be just a whim. And often this becomes a problem that gives rise to a negative attitude towards such patients.

DIET FOR CHILDREN WITH CELIAC DISEASE

Gluten-containing products made from wheat, rye, barley and oats are excluded from the diet of people with celiac disease. Cereal products allowed include corn, rice, and buckwheat.
It is necessary to eat a sufficient amount of meat, fish, poultry, dairy products, as well as vegetables and fruits, unless their consumption is limited due to concomitant pathology or individual intolerance. In particular, whole milk is not recommended for many patients with celiac disease (but it is possible to take fermented milk products) due to frequent intolerance milk sugar lactose.
It is recommended to consume special gluten-free products certified for consumption by persons with celiac disease. On the labels of such products there is a symbol - a crossed out ear.
Important!The composition of some products may not indicate the presence of cereal components, but they may nevertheless be present. Thus, products may contain so-called. “overt” gluten, as well as “hidden” gluten.

Products containing “obvious” gluten:
- porridges made from wheat, rye, barley and oats, including semolina, pearl barley and “Gerku-forest” porridges, “Artek” porridge, dishes with pearl barley;
- flour from wheat, rye, barley, oats. Products made from this flour;
- bread, crackers, buns, pies made from the above flour. Breaded dishes. Bread crumbs in various products;
pasta(pasta, horns, vermicelli, noodles, etc.);
— confectionery products, including pastries and cakes;
- cutlets (breaded);
- sausages, sausages.

Products that may contain “hidden” gluten:
- candies;
- dry soups instant cooking,
- ice cream; bouillon cubes;
— mayonnaise, ketchup, sauces, vinegar;
— canned meat and fish;
soy products;
- instant coffee, cocoa powder.

Gluten also contains:
- some cosmetical tools, including creams;
- glue on stamps and envelopes;
- some types of toothpaste and lipstick.

Gluten-free recipes for every day and for holidays
A gluten-free diet does not involve giving up tasty food! The recipes below will allow you to pamper yourself and your children.

Pie “CHARLOTTE” Compound. 3-4 eggs, 1 glass of sugar, 1 glass of rice flour, 3 apples.
Preparation. Beat eggs with sugar, add flour and stir well. Grease the frying pan with oil and sprinkle with corn or rice flour. Add the chopped apples and pour over the whipped mixture. Bake for 30 minutes at a temperature of 180-190 degrees. Turn the baked cake over and sprinkle with powdered sugar.

Lazy dumplings Compound. 100 g of cottage cheese, 3 potatoes, 1 egg, 2-3 tablespoons of corn flour (starch).
Preparation. Boil the potatoes and pass through a meat grinder along with cottage cheese. Mix with remaining ingredients. Knead the dough of medium hardness, form it into balls and boil them in salted water.

Express khachapuri Compound. Dough. 1 cup gluten-free flour, 200 g cottage cheese, 125 g margarine, 1/2 tsp. slaked soda, 1 egg.
Filling. 150 g grated cheese, 1 egg, 1 tablespoon of sour cream.
Preparation. Knead the dough and form two flat cakes. Grease the mold and place the cake in the mold. Place the filling on top. Cover with the second tortilla and pinch the edges. Bake in preheated oven for about 20 minutes.

Yanka Cake Compound. 1 can of condensed milk, 1 cup of gluten-free starch, 1/2 tsp. soda, a pinch of salt.
Preparation. Mix all the ingredients and pour into a greased frying pan, filling it 1/3 full. Bake over medium heat until done. Soak the cake with sour cream

Social disease
Unfortunately, children with celiac disease often face social problems. The requirement to follow a daily diet entails many organizational difficulties, restrictions, and lifestyle changes.
Problems often arise in the family: some parents experience constant fear for the child, which leads to excessive guardianship over him. It happens that instead of joy and pride in a son or daughter, an atmosphere of anxiety and tension dominates in the house, and conflicts between parents are increasingly occurring. Sometimes parents (more often this happens with fathers) emotionally reject a sick child. They demonstrate a feeling of disappointment because the baby did not live up to their expectations. Mothers, on the contrary, suppress this feeling and become overly caring.
There is no doubt that a child with celiac disease must be careful when eating. However, the diet should not affect other areas of his life! He needs to be able to go somewhere, participate in group activities and sports games. It is worth teaching him to act in such a way that he is almost no different from other, healthy children.
But this, unfortunately, is not an easy task for parents of a child with celiac disease. Kindergarten, summer rest, school canteen, trips to cafes and restaurants... It is very difficult for children who require strict adherence to a diet to live, develop, study and relax with their peers - after all, most child care institutions cannot provide them with appropriate nutrition. That is why in some Russian cities, parents of children with celiac disease unite - to solve common problems.
For example, in Cherepovets there is experience working with families with children with celiac disease within the framework of the Vologda regional public organization “Celiac Disease Support Center”. The work of the center is aimed at improving the quality of life of children with this disease, as well as their relatives and friends. At the time of the organization's creation, the city community, including the medical community, had a limited understanding of celiac disease. Cherepovsk residents are proud that during their work they managed to change the situation and achieve a lot.
Another similar organization exists in St. Petersburg - this is the Emilia society created in 1998. They publish a newspaper and magazine called “Life Without Gluten”, as well as a children’s newspaper “Gluf”. In 2001, the first Russian-language website on celiac disease issues was created. The opening of the first gluten-free food store in Russia and the creation of gluten-free food groups in kindergartens were also initiated here. In a specially created center, patients are also provided with psychological support.
Dale Carnegie said, “If you get a lemon, make a lemonade out of it.” It’s quite difficult to find positives in illness. But on the website of the Emilia Society (www.celiac.spb.ru) you can read a very important thing: “Now, living “around” celiac disease, we are constantly in a creative search.” Parents of children with celiac disease are trying to realize themselves professionally in order to earn more money for expensive gluten-free products. They are constantly looking for new information about the disease. They read psychological literature and undergo training to help their children find a place in society and not lose themselves. The main thing is not to give up, and then the diagnosis of celiac disease will not be able to poison the life of you and your beloved child.

Diana Loginova| mother of a child with celiac disease, founder and director of the Vologda regional public organization “Celiac Disease Support Center”

Ulyana Alfeeva| journalist, mother of two sons

Informing society about people with celiac disease, as well as improving their quality of life, are the main tasks that all parents whose children have been diagnosed with this would like to solve. The Vologda regional public organization “Celiac Disease Support Center” has achieved great success in this field. The result of persistent, systematic work was: -the opening of a specialized sanatorium kindergarten with a separate catering unit for children suffering from celiac disease (the only kindergarten of this profile in Russia);
— organization of summer vacation, both for squads and families (free and at a reduced price when parents pay for the vacation);
- organization safe zone food for patients with celiac disease in hospitals, sanatoriums and some cafes in Cherepovets and Vologda upon pre-order;
— organizing leisure activities for families with celiac disease;
— the issues of military medical examination of conscripts suffering from celiac disease have been resolved;
— initiation of amendments to the law of the Vologda region dated December 29, 2003 No. 982-03 “On the protection of family, motherhood, paternity and childhood in the Vologda region”: from July 1, 2007, families raising children with celiac disease are paid for a regional budget account, a monthly allowance in the amount of 1,200 rubles for each such child;
— a specialized store for gluten-free products has been opened;
— fundraising is being developed to solve socially significant problems of patients with celiac disease in the Vologda region;
— formation of an information space about the problems of patients with celiac disease;
— creation and implementation of socially significant city, regional, Russian and international projects in order to attract public attention to the problems of patients with celiac disease and attract targeted funds to improve the quality of life of this category of the population

Celiac enteropathy (gluten-sensitive celiac disease) is an immune-dependent disease with lesions and systemic autoimmune manifestations caused by intolerance to the cereal gluten protein - gluten.

This disease is also known as abdominal sprue, gluten-sensitive enteropathy and non-tropical sprue, celiac disease, and idiopathic steorrhea.

There are no exact data on the incidence of celiac disease. Researchers compare gluten intolerance to an iceberg and believe that the number of identified cases of the disease is like the tip of the iceberg and that the true number of people suffering from this disease is much higher.

Screening studies of blood donors have found that the prevalence of the disease reaches 1:256 in all European countries. Low-symptomatic (latent forms) in adults are 4-5 times more common than those with severe symptoms. Almost 80% of patients are women.

Studies have shown that among the closest relatives of patients, approximately 10% have latent celiac disease.

Why is gluten dangerous?

Gluten is the gluten protein found in grains.

Wheat flour contains from 7 to 15% protein, 90% of which is gluten.

Gluten consists of four components:

  • albumen,
  • globulin,
  • prolamine,
  • glutenin.

Only prolamine has a toxic property that causes celiac disease.

The amount of prolamine in different cereals varies.

  • millet 55%,
  • wheat 33-37%,
  • rye 33-37%,
  • barley< 10 %,
  • oats< 10 %,
  • corn 6%,
  • buckwheat 1%.

Prolamin in wheat is called gliadin, in rye - secalin, in barley - hordein, in oats - avenin, in corn - zein.

Gluten (prolamine) in corn, buckwheat and rice does not cause celiac disease.

There is no clear data yet regarding oats. When conducting special studies of gluten-free diets with and without oats, we were convinced that a small amount of it can be included in such diets - no more than 70 grams per day.

Reasons for the development of the disease

Several mechanisms of gluten intolerance are currently being considered.

  1. Congenital absence or reduced production of enzymes that break down gluten in the small intestine is one of the causes of celiac disease. In approximately 0.03% of patients, the disease is inherited. The accumulation of toxic products in the mucous membrane of the small intestine due to incomplete breakdown of gluten leads to metabolic disorders. Products of incomplete breakdown of gluten come into contact with the intestinal mucosa and damage it. This leads to the development of the disease.
  2. In addition to hereditary, there is a secondary, acquired gluten intolerance. Some researchers consider the cause of its development to be a consequence (probably adenoviral) or other diseases.
  3. Malfunctions play a significant role in the development of the disease. immune mechanism. In this case the process is similar. In individuals with celiac disease, in response to gluten, the jejunal mucosa produces more IgA and IgM antibodies, as well as T lymphocytes.
  4. One of the reasons is the body’s inadequate toxic reaction to the absorption of incompletely broken down gluten products in the intestines. At the same time, lymphokines are produced, which contribute to damage to the mucous membrane of the small intestine.

The mechanism of the damaging effect of gluten (gliadin)

The effect of gliadin on the intestinal mucosa leads to partial or total villous atrophy. The epithelium of the mucous membrane of the small intestine is quickly renewed, in just 3-5 days.

Modern research has shown that in celiac disease there is an increased rate of cell rejection, which leads to an increased rate of new tissue formation. But the accelerated new formation of cells leads to the fact that immature cells (enterocytes) appear on the surface of the villi, unable to perform their functions.

By following a strict gluten-free diet, the structure of the intestinal mucosa is gradually restored. If such a diet is not strictly followed, there is no positive dynamics of recovery.

What areas of the intestine are affected?

Most often, celiac disease affects the proximal (middle) part of the small intestine, with lesions decreasing towards the distal part (as it approaches the large intestine). The extent of intestinal damage depends on the severity of the disease.

The involvement of the proximal part can be moderate in asymptomatic cases of the disease with minor or even histologically undetectable changes in the mucosa.

In some cases, the mucous membrane of the stomach and rectum may be affected.

Damage to the duodenum and jejunum occasionally appears as plaques. In this case, it is necessary to urgently perform a biopsy to examine them.

Kinds

Most experts adhere to the following classification of the disease:

  • classical is accompanied by symptoms characteristic of diseases of the gastrointestinal tract,
  • atypical with one or more symptoms not characteristic of gastrointestinal diseases,
  • asymptomatic with no symptoms despite the presence characteristic lesion intestines.

Symptoms

Gluten intolerance presents with many different symptoms. The typical course of the disease is characterized by alternating constipation and diarrhea, periods of remission and exacerbations.

Since celiac disease is associated with metabolic disorders, one way or another it affects the functioning of all organs and systems of the body. Often patients come with complaints that at first glance are not related to the gastrointestinal tract. They are worried about high fatigue, weakness, shortness of breath, pain in the bones and spine.

Lack of vitamins B1, B2 and B3 due to disruption of the small intestine where they are produced causes neurological symptoms such as:

  • muscle weakness,
  • impaired coordination of movements,
  • Sensitivity disturbance (tingling, numbness).

Vitamin A deficiency causes problems twilight vision, “night blindness” appears.

Celiac disease can be combined with such skin diseases, How

  • dermatoses,
  • hives,
  • cutaneous vasculitis,
  • psoriasis,
  • vitiligo,
  • focal alopecia.

Main symptoms of gluten intolerance

The main signs of the disease are:

  • chronic diarrhea,
  • weight loss,
  • anemia,
  • bloating,
  • feeling of fullness,
  • vague pain and discomfort in the abdomen,
  • loss of appetite,
  • fatigue and malaise,
  • foul-smelling feces

In some cases, the disease is practically asymptomatic. It may be limited to vague abdominal pain, bloating, occasional diarrhea, and fatigue. In this case, the diagnosis is made during examination associated with other diseases and is confirmed by the presence of changes in the mucous membrane of the small intestine.

Provoking factors for exacerbation of the disease and the manifestation of the first signs are most often pregnancy and childbirth, neuropsychic trauma, and acute intestinal infections.

Frequent signs are bloating, increasing in the evening, lack of appetite, nausea, and vomiting.

Severe abdominal pain is not typical, but is more common dull pain in all parts of the abdomen. Sometimes there is soreness around the navel, rumbling and splashing throughout the colon.

In patients with limited intestinal damage, including only the duodenum and middle sections of the jejunum, intestinal symptoms. In this case, the disease manifests itself with such symptoms as

  • anemia due to iron deficiency and/or folic acid, vitamin B12,
  • demineralization of bones, manifested by fractures.

Signs of severe celiac disease

In severe cases of the disease, the following symptoms are added to the main ones:

  • the stool has a foamy, semi-formed character,
  • stool is light brown, greasy and foamy,
  • stool has a rancid or foul odor
  • in some patients, diarrhea alternates with constipation,
  • pinpoint hemorrhages appear on the skin,
  • bleeding (uterine, nasal, gastrointestinal),
  • muscle cramps,
  • in the corners of the mouth, less often behind the ears and at the wings of the nose, weeping cracks appear,
  • nails are dull, cross-striated, flaking,
  • thickening may occur distal phalanges fingers,
  • the tongue becomes crimson-red, with atrophied, smoothed papillae.

In these cases, adrenal insufficiency often develops, which in addition to fatigue causes symptoms such as:

  • dizziness,
  • hyperpigmentation of the skin and mucous membranes.

For very severe celiac disease

  • stool frequency reaches 10 times a day,
  • dehydration occurs
  • acidosis (displacement acid-base balance body in the direction of increasing acidity and decreasing pH),
  • malabsorption syndrome develops,
  • secondary damage to many organs and systems.

Celiac disease in children

The disease most often develops in children 4-6 months old. This is due to the introduction of complementary foods containing gluten. Symptoms of the disease may disappear as the child grows up, but then appear again at the age of 20-40 years.

Symptoms of gluten intolerance appear within a period of 2 to 4-8 weeks after the introduction of gluten products into the child’s diet.

The disease may manifest itself in the 2-3rd year of life in the case of a hereditary predisposition and under the influence of traumatic factors (when placed in children's group, stress, sudden changes in diet, etc.).

At early artificial feeding mixtures containing flour, the disease can develop as early as 2-3 months of life.

Symptoms of celiac disease in children

The disease begins to manifest itself gradually:

  • lethargy appears,
  • appetite decreases until it is lost,
  • stool disorder occurs.

In most cases, celiac disease is characterized by diarrhea, sometimes polyfecal matter ( a large number of feces) without changing the consistency of the stool, constipation rarely develops.

At further development Symptoms of gluten intolerance include:

  • malnutrition,
  • anemia (lack of iron in the blood),
  • pallor, dryness and pigmentation of the skin,
  • dystrophic changes in hair and nails,
  • sometimes glossitis (the tongue becomes crimson in color),
  • inflammation of the gums (gingivitis),
  • growth retardation,
  • muscle hypotonia,
  • an enlarged abdomen, against the backdrop of thin arms and legs.

During the most acute development illness, the child has a painful appearance, stools up to 3-4 times a day. The stool is watery, foul-smelling, foamy due to the fermentation of undigested carbohydrates, shiny with fatty inclusions (steatorrhea).

The child is emotionally unstable, irritable, capricious, indifferent to everything around him.

Diagnosis and treatment of a child are the same as for adults.

Complications of celiac enteropathy

Malignant tumors

In patients with celiac enteropathy, lymphoma and small intestinal cancer develop 83-250 times more often than in the general population. Cancers of the esophagus, stomach and rectum are also more common. Overall, malignant tumors are the cause of death in about half of people with celiac disease.

Timely diagnosis malignant tumors installed only with instrumental methods(endoscopy of the esophagus, stomach, small and large intestines, X-ray examination entire gastrointestinal tract).

Unreasonable deterioration in the condition of patients and some laboratory parameters with strict adherence to a gluten-free diet, this is the basis for the assumption that the disease is complicated by a malignant tumor.

Most significant symptoms in this case are:

  • intestinal obstruction,
  • increased ESR,
  • positive reaction to occult blood in feces
  • deterioration of tests.

Chronic nongranulomatous ulcerative jejunoileitis and enterocolitis

This complication is characterized by multiple chronic ulcers, which are found more often in the jejunum, less often in the ileum, and sometimes in the colon.

Ulcerative jejunoileitis often develops at 50-60 years of age and may be the first manifestation of the disease.

This disease is accompanied by such symptoms as:

  • fever,
  • general weakness,
  • weight loss,
  • abdominal pain,
  • diarrhea, possibly with blood.

Neuropathy

Neuropathy occurs in 5-8% of patients with celiac disease. It develops mainly in men aged 30-70 years. This complication develops quickly and is manifested by the following symptoms:

  • numbness,
  • tingling pains,
  • weakness of the legs,
  • sometimes difficulty writing and dressing.

The cause of these complications has not been identified.

Diagnostics

The World Organization of Gastroenterologists has developed a practical guide that specifies a diagnostic algorithm.

  • Autoantibodies and endoscopy with intestinal biopsy (“gold standard”).
  • Antibodies.
  • Diagnosis based on symptoms, improvement when switching to a gluten-free diet.

Endoscopy

Although endoscopy is a valuable testing method, it should not be considered the only diagnostic method. The markers of mucosal atrophy discovered by this method are also characteristic of other diseases, for example, tropical sprue, malnutrition, and others.

The main histological signs of gluten enteropathy are atrophy of the mucous membrane with a sharp shortening of the villi or even their complete atrophy and elongation of the crypts, increased content MEL.

Coprological examination and urine analysis

In severe cases of celiac disease, protein is detected in a urine test.

A scatological examination reveals polyfecality (a large amount of feces is excreted). Daily weight feces can reach 1500-2500 grams. Feces have light color and a rancid smell. Microscopic examination shows steatorrhea (excessive fat production).

Blood analysis

At mild form disease, there may be no changes in the blood test.

In moderate and severe forms, there is a lack of iron, vitamin B12, increase in ESR, a decrease in the number of platelets and leukocytes is possible.

In some patients, anemia may be one of the first or even the only sign of the disease.

A biochemical blood test reveals deviations from the norm only in patients with severe forms of malabsorption and not in all cases.

Significant changes in blood tests are detected when the intestines are damaged and the process spreads to other organs.

Only a decrease in one or another substance in the blood (for example, potassium, sodium, calcium, magnesium, zinc) has diagnostic significance. Physiological blood constants can remain at normal levels for a long time.

Immunological diagnostic methods

In patients with untreated gluten enethropathy, the concentration of antibodies to the ɑ-fraction of gliadin in IgA and IgG is significantly increased. When following a gluten-free diet, their level decreases to normal, which indicates the importance of these indicators for the diagnosis of celiac disease.

Methods characterizing the absorption function of the small intestine

These methods allow one to judge absorption by the rate and amount of appearance in the blood, saliva, urine or feces. various substances, taken orally or introduced through a probe into the duodenum. These methods have diagnostic value only in patients with severe malabsorption (grades II and III).

X-ray examination

This type of examination is not basic, but for some types of gluten intolerance it can confirm the diagnosis. This is due to the fact that in most cases of celiac disease the upper sections small intestine and no changes in the ileum.

Disability benefits for children 2019 are social payments and additional types of assistance that are available to parents whose children have health problems and are assigned a certain disability group.

List of diseases for determining disability for children in 2019

According to the provisions of Article 1 of the Law “On social protection disabled people in the Russian Federation" No. 181-FZ on assigning disability to children in 2019, a disabled child is considered to be a child who has a health disorder associated with a disorder of body functions.

Regardless of what disease the child suffers from and at what stage the development of the pathology is, according to this law, in 2019 on the establishment of disability for children, he can receive this category at the age of 18 years if one of these points is fulfilled:

  1. Persistent distress noted normal functioning body caused by injury, childbirth or illness.
  2. There is no opportunity to live, move, talk, study, work and perform self-care activities independently.
  3. There is a need for social protection from the state.

The category of disability is not assigned forever, but for a certain period. According to Federal Law, in Russia, disability can be assigned for 1 year, 2 years and 16 years. Then you will need to be examined again to confirm your disability. The period when a child belongs to this category of citizens, he has the right to receive a social pension, the amount of which is indexed every year.

  • mental disorders;
  • disruption of the body's sensory system;
  • external physical deformities;
  • lack of normal functioning of language and speech;
  • violation of body functions associated with the ability to move;
  • impaired functioning of the digestive organs, heart, blood vessels, respiratory, endocrine, circulatory, and immune systems;
  • diseases associated with urinary dysfunction;
  • dysfunction of the skin and related diseases.

Groups for assigning disability to children according to the 2019 Federal Law.

Currently, according to the legislation of the Russian Federation, there are the following categories of disability:

  • Group I;
  • Group II;
  • III group.

First group– one of the most difficult disability categories. Its assignment is carried out only in case of severe disruption of functioning human body. As a rule, disabled people of group I Everyday life cannot do without the help of other people.

The first group is usually assigned for the following violations:

  • complete or partial absence organs of vision;
  • hereditary or congenital diseases, severely damaging the functioning of the central nervous system;
  • absence of lower limbs;
  • hearing damage of 80% or more.

The first group is also assigned for other, equally serious diseases.

Disabled people of group II– these are children who can perform minimal self-care activities without the help of other people, possibly with the use of special equipment. The list of disorders for which this group can be assigned usually consists of diseases such as:

  • cirrhosis of the liver;
  • visual impairment;
  • paraplegia;
  • fistula;
  • disarticulation of the thigh;
  • presence in the body of one lung or pulmonary failure second degree.

Group III disability is often assigned to children who have limitations due to previous illnesses and injuries. In the future, persons belonging to this category of citizens of the Russian Federation will not have special restrictions in labor activity, and will receive a salary at the level of other employees, but they are entitled to state social assistance and material support. Group 3 disabilities are considered to be children who have the following health problems:

  • speech disorders;
  • minor mental disorders;
  • pulmonary tuberculosis;
  • sensory perception disorders;
  • minor manifestations of physical deformity.

Assignment of disability in 2019 to children with diabetes and clubfoot

In case of disability, children with diabetes mellitus in 2019, the first or second group may be assigned depending on the severity of the disease. First of all, social assistance and benefits for diabetic children is aimed at providing this category of citizens with all the necessary medications.

Disability for clubfoot in children in 2019 is assigned to a child based on the presence of defects and deformities lower limb. To do this you need to go through medical examination and get an opinion from a surgeon and orthopedist. With clubfoot, a child may have disability group 2 or 3.

Types of social assistance for disabled children

Disabled children are a special category of children who need care not only from loved ones and society, but also from the state. In 2019, payments for disability to a child are made to about 550 thousand children who fall into this category of Russian citizens.

In 2019, the Russian Federation provides for the following types social assistance for disabled children who are citizens of the Russian Federation:

  • monthly charges;
  • benefits provided for by the Labor Code;
  • benefits related to housing issues;
  • transport benefits;
  • benefits for ensuring the upbringing and further education of children;
  • benefits for treatment, sanatorium holidays;
  • tax benefits.

According to the disability law, children are entitled to a social state pension in 2019. For this year, the following amounts of financial assistance have been established for parents or guardians of disabled children:

  • disabled people from childhood, group 1 - 10,376 rubles per month;
  • disabled people of the 2nd group since childhood, as well as citizens who received a disability of the 1st group - 8,647 rubles per month;
  • disabled people of group 2 – 4,323 rubles per month;
  • disabled people of group 3 – 3,675 rubles per month.

In addition, parents or guardians of children who fall into this category of Russian citizens with disabilities who care for them receive financial compensation. The amount of such financial assistance is 60% of the official minimum wage.

In addition, persons who care for a child are entitled to the following monetary payments:

  • 5,500 rubles – to a parent or guardian;
  • 1,200 rubles – to other categories of persons who care for a child with disabilities.

Benefits for families with disabled children in 2019

Not only pensions in the form monthly payments entitled to citizens of the Russian Federation. Families of children with disabilities in 2019 can count on the following benefits:

  • benefits for utility bills – 50%;
  • Telephone discount – 50%;
  • the mother of a disabled child who has not yet turned 16 years old has the right to part-time work or a week;
  • the organization does not have the right to refuse employment to the mother of such children and lower wages;
  • the organization on its own initiative does not have the right to fire the mother of a disabled child;
  • one parent or guardian has the right to an additional 4 days off per month;
  • free travel on public transport for citywide or natural transport;
  • a permanent discount of 50% on all types of transport, it is valid for the period from October 1 to May 15 of each year;
  • priority right to enrollment in kindergarten if it is possible to attend due to health reasons;
  • exemption of parents from paying for kindergarten services;
  • priority right to enroll in a university if the necessary quotas are provided and the entrance exams are successfully passed;
  • free receipt of prescription drugs prescribed by your doctor;
  • free receipt of prostheses and other orthopedic products;
  • receiving sanatorium-resort voucher per child and one accompanying person.

Establishment and extension of disability for a child in 2019

The determination and extension of disability for a child in 2019 is carried out by a medical and social expert commission - MSEC. The procedure is carried out in one of the following ways:

  1. After the diagnosis has been made and the course of treatment completed, the doctors themselves recommend that the patient’s parents receive a disability group and refer him to the MSEC.
  2. The child's parents or guardians themselves declare to the attending physician their intention to obtain a disability group and ask for a referral to undergo the MSEC.

Sometimes parents of a sick child who want to receive a disability category have to make efforts to convince representatives medical commission about the existence of dysfunctions of the child’s body.

To pass the expert medical commission, you must prepare documents from this list:

  • Referral by the attending physician to MSEC.
  • Original and copy of birth certificate.
  • Original and copy of the passport of one of the parents or guardian.
  • Original and photocopy of passport (for persons over 14 years of age).
  • Certified copy work book parents or guardians.
  • Child's outpatient card.
  • Extracts from all hospitals where the child was treated, as well as copies thereof.
  • Application for examination.
  • A document confirming the place of registration of the child.

Extension of disability for a child in 2019 takes place in exactly the same way. Parents again collect all the necessary documents and, together with their child, undergo a medical and social expert commission.

Removal of disability from children in 2019 upon expiration

The removal of disability from children in 2019 takes place automatically after the expiration of the period for which this category was assigned. If parents or guardians of children who have been assigned disability status, for certain reasons, want to remove the child from the register earlier, a medical expert commission is required. During such a procedure, it is important to prove that the child does not have health problems or any restrictions in self-care.



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