Currently being updated.
Is a wheat-free or gluten-free diet a treatment for Sweet’s syndrome?
It is not unusual for Sweet’s syndrome patients to be given inaccurate, bad or potentially harmful advice about their condition, particularly from non-health professionals. They can also find that they are pressurized into following a wheat-free or gluten-free diet, or some other kind of special diet as a treatment or cure for their Sweet’s syndrome. This is sometimes well-meant, but often, someone is just trying to promote their own agenda, or get people to buy a particular product or service.
Please be aware of the fact that there is absolutely no medical evidence to show that a wheat-free or gluten-free diet, or any other kind of special diet is a treatment or cure for Sweet’s syndrome. Be wary of anyone who makes such claims, particularly if they are trying to sell you something.
Do some patients with Sweet’s syndrome need to follow a wheat-free or gluten-free diet?
Yes. You will need to follow a 100% gluten-free diet if you have developed your Sweet’s syndrome secondary to the autoimmune condition, coeliac disease. This is because in order to bring the Sweet’s syndrome under control you need to manage or treat the underlying condition. However, Sweet’s syndrome developing secondary to coeliac disease is incredibly rare, and only one case has been reported in medical literature (Eubank et al, 2009).
What is coeliac disease?
When people with coeliac disease eat gluten, the surface of the small intestine becomes inflamed, and this affects the body’s ability to digest food. Management or treatment of coeliac disease includes a gluten-free diet, sometimes extra vaccinations and/or supplements, and less commonly, medication. See ‘Further information’ below to learn more.
Do patients with Sweet’s syndrome sometimes need to follow a wheat-free or gluten-free diet for other reasons?
Occasionally, someone with Sweet’s syndrome may need to follow a wheat-free or gluten-free diet for other types of condition that affect the bowel or gut, and a wheat-free diet will be necessary if you have a wheat allergy.
Can a wheat-free or gluten-free diet be harmful?
Eliminating wheat or gluten from your diet shouldn’t be harmful as long as you make sure that you are meeting all of your nutritional requirements. However, these diets aren’t suitable for everyone, and could potentially increase the risk of nutritional deficiency, e.g. calcium, iron, folic acid, or zinc deficiency, in some people. It is also advisable to check the nutritional content of gluten-free substitutes, e.g. bread or pasta, as they sometimes contain more fat or sugar than products containing gluten.
Frequently asked questions.
Question 1: Can a wheat-free or gluten-free diet be used to treat or cure Sweet’s syndrome and other autoinflammatory conditions?
No. Autoinflammatory conditions such as Sweet’s syndrome are not caused by diet, but errors in the innate immune system – the body’s most primitive, ‘hard-wired’ immune system. This then causes the immune system to activate inflammatory cells, often for unknown reasons, which leads to inflammation.
The majority of autoinflammatory conditions are genetic, which means that they occur as a result of gene mutation that affects how the innate immune system works. However, there are some, including Sweet’s syndrome, that are not usually genetic. In such cases, people are more likely to have certain genes that increase their risk of developing a particular autoinflammatory condition, i.e. they are genetically susceptible, but something may be needed to trigger it. Diet is not one of these triggers. Read about triggers for Sweet’s syndrome here.
Question 2: People with the autoimmune condition coeliac disease have to follow a gluten-free diet. My nutritional therapist told me that this means that all people with autoinflammatory conditions should be on a gluten-free diet too, even if they don’t have coeliac disease. Is this true?
No. Even though some autoinflammatory conditions, e.g. Sweet’s syndrome, can develop secondary to autoimmune conditions, autoinflammatory and autoimmune conditions are different. Also, gluten cannot play the same kind of role in autoinflammatory conditions as it does in the autoimmune condition, coeliac disease. This is because autoinflammatory conditions are not caused by diet, the wrong part of the immune system is involved, and there is no antibody production in response to certain naturally occurring proteins in the body. See below for further explanation.
- What kind of condition is Sweet’s syndrome? Go to this blog post to find out how the adaptive immune system works, what an autoimmune condition is, and what antigens are.
- In people with the autoimmune condition, coeliac disease, a part of the immune system called the adaptive immune system mistakes gliadin (a component of gluten) and tissue transglutaminase or tTG (a multifunctional enzyme or protein that also modifies gliadin so you can digest it) for foreign invaders such as a bacteria or virus. White blood cells called B-lymphocytes then make antibodies in response to the gliadin and tTG, and the antibody production in response to tTG in particular, causes inflammation and damage to the lining of the gut. Antibodies are also produced in response to endomysium (EMA) which is the protective covering of connective tissue that surrounds each individual muscle fibre. However, this does not cause direct symptoms to intestinal muscle.
Sometimes, Sweet’s syndrome can develop secondary to autoimmune conditions other than coeliac disease. However, just because those with coeliac disease have to follow a gluten-free diet, doesn’t mean that people with other autoimmune conditions will benefit from a gluten-free diet. This is because which proteins in the body are targeted will depend on what kind of autoimmune condition you have, e.g. antibodies will be produced in response to proteins other than tTG and EMA.
- Autoinflammatory conditions involve the innate, and not the adaptive immune system. The innate immune system does not employ B-lymphocytes, and does not produce antibodies. Therefore, the inflammation in the bodies of patients with autoinflammatory conditions cannot be caused by the production of antibodies in response to tTG, EMA or gliadin.
Question 3: Is Sweet’s syndrome an allergic reaction to wheat?
No. Sweet’s syndrome is not an allergic reaction to wheat, and neither autoinflammatory nor autoimmune conditions are caused by allergy. See below for further information, and read Question 1 & 2.
- The most common type of allergy is an IgE-mediated allergy. This is an adverse reaction that the body has to a particular substance that is foreign to the body, e.g. a food, pollen, or cat hair, that does not normally cause harm. This substance is known as an allergen (a type of antigen). Allergic reaction occurs when the immune system mistakes an allergen for a foreign invader such as a bacteria or virus. The adaptive immune system then quickly produces allergen-specific immunoglobulin E (IgE) antibodies in response to this, in order to fight the allergen off. Chemicals such as histamine are also produced, with the overall immune response causing the symptoms of allergy.
- Another type of allergic reaction is a non-IgE-mediated allergy, which is believed to be T-cell mediated. This is an immune response that doesn’t involve antibodies and where white blood cells called T-lymphocytes (part of the adaptive immune system) are activated. The symptoms of this type of allergy can take much longer to develop than in IgE-mediated allergy, sometimes up to several days.
- In autoinflammatory conditions, the innate and not the adaptive immune system is involved, and antibody production does not occur.
- Despite antibodies being involved in both autoimmune conditions and IgE-mediated allergy, they are not the same thing. In IgE-mediated allergy, allergen-specific IgE antibodies are produced in response to something that is foreign to the body. In autoimmune conditions, antibodies are produced in response to naturally occurring proteins in the body, e.g. tTG and EMA in coeliac disease.
Question 4: I don’t have coeliac disease, but my friend told me that intolerance to gluten is probably causing my Sweet’s syndrome. Is this true?
No. Sweet’s syndrome or other autoinflammatory conditions are not caused by an intolerance to gluten.
What is gluten intolerance?
Gluten intolerance or non-coeliac gluten sensitivity (NCGS) is a sensitivity to gluten in people who do not have the autoimmune condition coeliac disease, and it is not the same as an allergy to wheat, or an autoinflammatory condition. In those who supposedly have NCGS, it causes intestinal and other symptoms as a result of eating foods containing gluten. There is ongoing debate over whether or not NCGS exists, and the stance of the NHS is that most people, unless they have coeliac disease, do not need to cut out gluten from their diet (NHS Choices, 2016).
If NCGS does exist, its exact nature is not fully understood for some of the following reasons:
- The role of the immune system still remains unclear in NCGS (Catassi et al, 2013: 3849). The intestinal innate immune system seems to play an important role, but the research is ongoing.
- It has not been determined whether or not symptoms of NCGS relate specifically or always relate to gluten, e.g. some people may be sensitive to other things in food that contain gluten, or have problems digesting certain types of carbohydrate.
- A person may have irritable bowel syndrome (IBS) and not NCGS, an overlap in symptoms between the two conditions making diagnosis difficult (Catassi et al, 2013: 3841). IBS is a common, long-term condition of the digestive system. It can cause stomach cramps, bloating, diarrhoea and/or constipation. The exact cause of IBS is unknown, but it is probably related to problems with digestion and increased sensitivity of the gut.
- The placebo effect (Catassi et al, 2013: 3849). This means that when someone strongly believes that they have NCGS even when they don’t, when they start to eat a gluten-free diet they feel better.
- We do not know whether or not NCGS is always a long-term condition. In some people it may be very short-term, transient or passing.
What are the symptoms of NCGS?
NCGS can cause a number of different symptoms. Gastrointestinal symptoms include bloating, abdominal pain, diarrhoea or constipation (Catassi et al, 2013: 3843). Extra-intestinal symptoms, i.e. symptoms that are not gastrointestinal, include headaches, dermatitis, skin rashes, joint pain, ‘brain-fog’, tiredness and fatigue. NCGS in children is less likely to cause extra-intestinal symptoms than in adults. Overall, the most common extra-intestinal symptom is tiredness, and there are no known major complications of untreated NCGS.
Please note that the symptoms of NCGS are also common symptoms of many other health conditions, and as a result, people sometimes think that they have NCGS when in fact they have another condition, or a minor and passing health problem.
What is the difference between Sweet’s syndrome and NCGS?
Sweet’s syndrome is caused by errors in the innate immune system, resulting in the activation of inflammatory cells, often for unknown reasons (see Question 1). Unlike NCGS, it is not linked to gluten, and symptoms do not stop when gluten is removed from the diet.
Is there a difference between coeliac disease and NCGS?
Yes, and some of the differences between coeliac disease and NCGS include:
- Coeliac disease is strongly linked to gene mutation which increases your risk of developing the condition. NCGS is not.
- No production of antibodies in response to tTG, EMA, and modified (deamidated) gliadin in NCGS, but does occur in coeliac disease (see Question 2 & 3) (Catassi et al, 2013:3847).
- Immunoglobulin G (IgG) antibodies are produced in response to gliadin in 56.4% of NCGS patients, and 81.2% of coeliac disease patients. IgG antibodies are different from IgE antibodies, and are produced in response to pathogens, not antigens. A pathogen is a foreign invader such as a bacteria or virus or other micro-organism that can do harm, while an antigen is a molecule or protein attached to the foreign invader that activates an antibody response.
- Only 7.7% of NCGS patients produce immunoglobulin A (IgA) antibodies in response to gliadin compared to the majority of those with coeliac disease. IgA antibodies are different from IgE and IgG antibodies, and prevent invading pathogens from attaching to any outer surface that needs to be protected, e.g. the outer surface of an internal organ, or eyes. They are mainly found in the mucous membranes, e.g. nose, breathing passages and digestive tract, but also in other substances such as tears, saliva, and blood. However, a small number of people do not make them.
- Unlike in coeliac disease, NCGS does not cause significant or severe inflammation, or damage to the lining of the small intestine.
Is there a difference between wheat allergy and NCGS?
Yes. There is a difference between wheat allergy and NCGS. Unlike in IgE-mediated wheat allergy, there is no production of allergen-specific IgE antibodies in NCGS (Catassi et al, 2013:3847). However, it can be difficult to distinguish between NCGS and non-IgE-mediated wheat allergy (Catassi et al, 2013: 3842).
I (Michelle Holder) am not a registered dietician. This information has simply been provided to help you make an informed decision about your dietary choices. Please seek further advice about the suitability of a wheat-free or gluten-free diet from a registered dietician or doctor, but not a nutritional therapist.
Catassi, C., Bai, J., Bonaz, B., Bouma, G., Calabrò, A., Carroccio, A., Castillejo, G., Ciacci, C., Cristofori, F., Dolinsek, J., Francavilla, R., Elli, L., Green, P., Holtmeier, W., Koehler, P., Koletzko, S., Meinhold, C., Sanders, D., Schumann, M., Schuppan, D., Ullrich, R., Vécsei, A., Volta, U., Zevallos, V., Sapone, A. and Fasano, A. (2013) Non-Celiac Gluten Sensitivity: The New Frontier of Gluten Related Disorders. Nutrients, Sept; 5(10):3839-3853 (online).
NHS Choices (2016) Food Intolerance (online). Last reviewed 11/08/16.
NHS Choices (2016) Coeliac Disease (online). Last reviewed 4/12/16.
NHS Choices (2015) ‘Leaky Gut Syndrome’ (online). Last reviewed 26/02/15. This is a condition that can supposedly be caused by gluten and other things, and lead to the development of certain health problems. It is a condition that is not recognised by the medical community, and there is absolutely no evidence to prove that it exists. PLEASE DO NOT BELIEVE ANYONE WHO TELLS YOU THAT SWEET’S SYNDROME IS CAUSED BY ‘LEAKY GUT SYNDROME’.
NHS Choices (2015) Should you cut out bread to stop bloating? (online). Last reviewed 18/05/16. Includes information on bread-related gut symptoms, health problems caused by wheat, and the anti-bloat FODMAP diet (originally designed for people with IBS).
Tousseau, J. and Durrant, K. (2014) Myth 6: It must be an allergy. Stop eating diary, wheat, gluten, MSG, etc and you will be fine in “It’s Just a Fever,” and Other Myths & Misconceptions About Periodic Fever Syndromes. SAID Support, May 22nd (online).
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