This post has been written in response to some of the questions that are often asked about Sweet’s syndrome and associated conditions, relating to the myth that a wheat or gluten-free diet can cure these conditions. Last updated 8/09/17, and links checked 7/02/18.
Is a wheat or gluten-free diet a treatment for Sweet’s syndrome?
No. A wheat or gluten-free diet is not a treatment for the autoinflammatory condition, Sweet’s syndrome (SS), and there is no evidence to show that these diets can help. However, people with SS can find that they are pressurized by others into following a wheat or gluten-free diet, or some other kind of special diet as a treatment or cure for their SS. This is often well-meant, but sometimes, someone is just trying to promote their own agenda, or sell a particular product or service.
Do some people with Sweet’s syndrome need to follow a wheat or gluten-free diet?
Yes. You will have to follow a 100% gluten-free diet if you have developed your SS secondary to the autoimmune condition, coeliac disease (CD). A gluten-free diet is needed to manage CD, and in people who develop their SS secondary to another condition, if the underlying condition isn’t brought under control then the SS often won’t settle down. However, SS developing secondary to CD is very rare, and only one case has been reported in medical literature (Eubank et al, 2009).
What is gluten? Is it a toxin?
Gluten is sometimes incorrectly referred to as a toxin. It is in fact a family of proteins found in grains like wheat, rye, spelt and barley. The two main proteins in gluten are gliadin and glutenin.
What is coeliac disease?
In people with CD, when they eat gluten the surface of the small intestine (part of the gut) becomes inflamed, and this affects the body’s ability to digest food. Management or treatment of CD includes a gluten-free diet, sometimes extra vaccinations and/or supplements, and less commonly, medication.
Do people with Sweet’s syndrome sometimes need to follow a wheat or gluten-free diet for reasons other than coeliac disease?
Yes. Occasionally, someone with SS may need to follow a wheat or gluten-free diet for other types of condition that affect the gut, but this condition may or may not be associated with SS. Some people may also benefit from a low FODMAP diet. Wheat, as well as some other plant foods, contain small fermentable carbohydrates (sugars), termed FODMAPs (Shrewy and Hey, 2016). A low FODMAP diet may improve the management of certain conditions affecting the gut by reducing fermentation in the large intestine.
When is a wheat or gluten-free, or low FODMAP diet necessary or potentially beneficial?
Aside from CD, a wheat or gluten-free, or low FODMAP diet may be necessary or potentially beneficial in the following conditions:
- Wheat allergy. No reported connection between wheat allergy and SS. In wheat allergy, a wheat or gluten-free diet is necessary. To learn more about wheat allergy, see ‘Question 3’.
- Irritable bowel syndrome (IBS). No reported connection between IBS and SS. People with IBS often benefit from a low FODMAP diet (about 70% effective), but it should only be followed under the guidance of a registered dietitian (KCL, 2017).
- Inflammatory bowel disease (IBD), e.g. Crohn’s disease or ulcerative colitis. SS can develop secondary to IBD, and a low FODMAP diet may be useful in managing IBD, but further research is required.
To learn more about IBS and IBD, see ‘Further information’.
If I want to follow a wheat or gluten-free diet is it 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 (Biesiekierski and Iven, 2015). However, it’s also important to acknowledge that foods containing wheat and gluten can be of nutritional benefit, and wheat or gluten-free diets aren’t suitable for everyone, with the potential to increase the risk of certain nutritional deficiencies, e.g. calcium, iron, or B vitamin, in some people (Biesiekierski and Iven, 2015; Shrewy and Hey, 2016). For example, someone may have a health condition that increases their risk of nutritional deficiency, or not have that much money to spend on food, gluten-free products generally being more expensive than their gluten-containing counterparts.
Frequently asked questions.
Question 1: Can a wheat or gluten-free diet be used to directly treat or cure Sweet’s syndrome and other autoinflammatory conditions?
No. Autoinflammatory conditions such as SS are not caused by diet, but errors in the innate immune system – the body’s most primitive, ‘hard-wired’ immune system, and a part of the immune system that doesn’t produce antibodies. These errors mean that the innate immune system activates 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 SS, 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 SS here.
Alongside genetic susceptibility, other direct causes for SS include cytokine dysregulation and hypersensitivity reaction.
Question 2: People with the autoimmune condition, coeliac disease, have to follow a gluten-free diet. Does this mean that people with the autoinflammatory condition, Sweet’s syndrome, should be on a gluten-free diet too, even if they don’t have coeliac disease?
No. Most of of time, if someone with SS doesn’t have CD, then they won’t need to be on a gluten-free diet. This is because even though SS can develop secondary to a number of different autoimmune conditions, autoinflammatory and autoimmune conditions are not the same thing. As a result, gluten cannot play the same kind of role in autoinflammatory conditions as it does in CD, as there is no antibody production in response to gliadins, or naturally occurring proteins in the body. Read the following points for further explanation:
- What kind of condition is Sweet’s syndrome? Go to this blog post to find out what an autoimmune condition is, and what role a part of the immune system called the adaptive immune system plays in autoimmune conditions.
- In people with CD, the adaptive immune system mistakes gliadins in gluten, and tissue transglutaminase or tTG (a multifunctional enzyme and protein that modifies gliadins so you can digest them), for foreign invaders such as a bacteria or virus. White blood cells called B-lymphocytes then make antibodies in response to the gliadins and tTG, the antibody production in response to tTG causing significant 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.
- As already mentioned, SS can develop secondary to a number of different autoimmune conditions. However, just because people with CD have to follow a gluten-free diet, doesn’t mean that people with other autoimmune conditions will benefit from this kind of dietary change. This is because which proteins in the body are targeted by antibodies will depend on what kind of autoimmune condition you have, i.e. antibodies will not be produced in response to gliadins, tTG and EMA, but other proteins.
Question 3: Is Sweet’s syndrome an allergic reaction to wheat?
No. SS is not an allergic reaction to wheat.
What is wheat allergy?
Genuine wheat allergy is rare, and is an IgE-mediated reaction to proteins in gluten and sometimes other proteins found in wheat. The symptoms of wheat allergy can develop within minutes to hours after the wheat has been eaten, and can include itching and swelling in the mouth, nose, eyes and throat, skin rash, wheezing, and the life-threatening reaction, anaphylaxis (Biesiekierski and Iven, 2015).
What is an IgE-mediated allergic reaction?
An IgE-mediated allergy is the most common type of allergy. It is an adverse reaction that the body has to a particular substance that is foreign to the body, e.g. a food or pollen, that does not normally cause harm. This substance is known as an allergen. 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 and kill the allergen. Chemicals such as histamine are also released, and the more histamine in your body, then the worse the allergic reaction will be.
Question 4: Is my Sweet’s syndrome being caused by an intolerance to gluten?
No. SS is 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 don’t have CD or wheat allergy (Shrewy and Hey, 2016). In those who have NCGS, it causes intestinal and other symptoms as a result of eating foods containing gluten.
Does NCGS really exist or is it a fake condition?
There is ongoing debate over whether or not NCGS exists, and the general medical consensus is that it probably doesn’t exist, but if it does exist, only a very small percentage of people are genuinely affected by it (Biesiekierski and Iven, 2015; Shrewy and Hey, 2016).
Why is there debate over whether or not NCGS exists?
There is debate over whether or not NCGS exists because its exact nature is not fully understood, it may be confused with other conditions, and gluten may not be the problem. Here are a few of the difficulties associated with diagnosing NCGS:
- There is currently no test to diagnose NCGS. Certain doctors (non-NHS), alternative therapists and businesses offer tests, but there is no evidence to prove that these tests work and are nothing more than a scam.
- The role of the immune system still remains unclear in NCGS (Catassi et al, 2013: 3849). The intestinal innate immune system may play an important role, but the research is ongoing (Catassi et al, 2013: 3849; Shrewy and Hey, 2016).
- It has not been determined whether or not symptoms of NCGS relate specifically to gluten or other components in grain (Biesiekierski and Iven, 2015; Shrewy and Hey, 2016). As a result, the term ‘non‐coeliac wheat sensitivity’ (NCWS) is now sometimes used instead of NCGS (Shrewy and Hey, 2016).
- A person may have IBS and not NCGS, an overlap in symptoms between the two conditions making diagnosis difficult (Biesiekierski and Iven, 2015; Catassi et al, 2013: 3841).
- Someone on a gluten-free diet may start to feel better and assume that it’s the removal of gluten that’s improving their condition, when in fact, it’s the reduction in FODMAPs (Biesiekierski and Iven, 2015; Shrewy and Hey, 2016).
- 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 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 short-term, transient or passing.
What are the symptoms of NCGS?
NCGS has been reported to have caused 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.
I (Michelle Holder) am not a registered dietitian. 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 or gluten-free, or low FODMAP diet from a doctor or registered dietitian.
NHS Choices (2016) Coeliac Disease (online). Last reviewed 4/12/16. Accessed 7/02/18.
NHS Choices (2017) Inflammatory Bowel disease (online). Last reviewed 25/04/17. Accessed 7/02/18.
NHS Choices (2017) Irritable Bowel Syndrome (online). Last reviewed 9/10/17. Accessed 7/02/18.
NHS Choices (2015) ‘Leaky Gut Syndrome’ (online). Last reviewed 26/02/15. Accessed 7/02/18. 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 that tells you that SS is caused by leaky gut syndrome.
NHS Choices (2015) Should you cut out bread to stop bloating? (online). Last reviewed 18/05/16. Accessed 7/02/18. Includes information on bread-related gut symptoms, health problems caused by wheat, and the low FODMAP diet which 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). Accessed 7/02/18.
Biesiekierski, J. and Iven, J. (2015) Non-coeliac gluten sensitivity: piecing the puzzle together. United European Gastroenterology Journal, Apr; 3(2): 160–165 (PMC).
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 (MDPI).
Eubank, K. , Nash, J. and Duvic, M. (2009) Sweet syndrome associated with celiac disease. American Journal of Clinical Dermatology (PubMed).
King’s College London/KCL (2017) Information on the low FODMAP diet (online). Accessed 7/02/18. If this link keeps taking you to the KCL homepage, simply do a page search for FODMAP.
Shrewy, P. and Hey, S. (2016) Do we need to worry about eating wheat? Nutrition Bulletin/BNF, Mar; 41(1): 6–13 (Wiley-Blackwell).
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