"Running a small local business I took food-on-the-go for granted until I was diagnosed with achalasia"
Living With Achalasia
Helping you live with Achalasia from day to day
No "one size fits all' for Achalasia
Individual experiences can differ very widely – there is no “one size fits all” for achalasia. So in relation to food, for instance, some have bad experiences with certain kinds of food, but this may not cause problems for others – even some brands of similar food can have a different effect. And problem foods often have an inconsistent effect on an individual – reflux or regurgitation one day may not occur another day.
Experiences can also be very different depending on the stage of the illness – a person recently diagnosed with achalasia, or even someone who has suffered deterioration over some years despite a number of medical interventions, may have different experiences compared to somebody who has had successful treatment.
There are many helpful tips and items of information that have been gathered by Achalasia Action over a number of years. This includes food that can cause problems, nutrition, dealing with painful spasms and information about medication. These hints may need to be adjusted and interpreted according to individual needs, such as severity of symptoms, and whether you have been treated with a surgical procedure.
Food that may cause problems
Achalasia interferes with the process of food and fluid passing down the oesophagus and into the stomach. Therefore there may be issues with what you can eat and drink, and this may have an impact on your nutritional well-being.
The most likely place for food to get stuck is just above your lower oesophageal sphincter (LOS) which is a sensitive valve that often remains clamped shut with achalasia. This means that relatively small variations in food texture can create a physical blockage, especially if it cannot be chewed into a soft consistency.
The main problems are food that
- causes an obstruction
- congeals
- causes irritation or
- is at the wrong temperature.
Food that may cause an obstruction
The most common issue is obstruction of the oesophagus, which may cause discomfort and pain in the chest. The list of foods that can cause problems in this way may not necessarily mean that you have to avoid them completely. It might be that chewing extra carefully or preparing the food differently might avoid the problems for some individuals:
- The skins of grapes, tomatoes, apples, peas etc.
- Salad items or similar fruit and vegetables that may have a difficult texture.
- Fruit or vegetables that are cooked ‘al dente’ rather than soft.
- Stringy runner beans, crisp lettuce and celery.
- Gristle, fat and stringy meat, with red meat more of a problem than white meat which for some people tends to be softer and easier to chew.
- Dry food, such as falafels, raw cauliflower, raw carrot or for some people pizza, which may lack the lubrication provided through sauces.
- Fish containing bones.
Food that congeals
Certain foods, if retained in the oesophagus for some time, can congeal. Consequently this may create a solid mass that acts as a barrier. Sometimes mixing the textures of food can help the food to pass through into the stomach more easily. Trying just small mouthfuls of this food at any one time may enable you to judge whether there are any adverse effects.
Examples of food that can easily congeal are:
- White and processed bread, which is likely to be more of a problem than other breads such as multigrain. Some people find toast better.
- White, fluffy rice, which is likely to be more of a problem than brown rice. Some find mixing with other ingredients and sauce helps.
- Naan bread, as well as some buns and cakes that do not break down easily into digestible form.
- ‘Spotted Dick’ / suet / dry puddings, or pastry.
- Potatoes and chips. You might try mashing potatoes and mixing it with cheddar cheese and/or sweet potatoes.
- Some people find any kind of pasta causes problems, but may be manageable for some with plenty of sauce.
Food that causes irritation
In a normal digestive system, it only takes a few seconds for food to pass through the oesophagus which has a lining that is much more sensitive than the stomach. Delayed transit to the stomach can therefore cause irritation and pain, depending on the nature of what has been swallowed.
- Spicy food can cause irritation if it stays in the oesophagus for a long period. Spice in soups or other food, including pepper, can sometimes cause an immediate reaction in a sensitive oesophagus.
- For some people, even tiny pieces of fruit skin, or seeds from fruit like raspberries can set up a reaction or irritation.
- Alcoholic (and some other) drinks might also cause a similar problem.
- Medications in pill form are often designed on the basis that they will reach the stomach in a normal time before their coating disperses. If they get stuck, their strong chemicals can cause damage to the oesophageal lining. You may request that medication is dispensed in liquid form, if possible. In some circumstances, crushing a pill and mixing it with, say, yoghurt may be an alternative. Taking medication before meals might help absorption and reduce the risk of it remaining in the oesophagus but you should ask your doctor or pharmacist for advice on this.
Food temperature
Temperature of food and drink affects some people, possibly because very hot or cold liquids set off a reaction from the nerve endings or other sensitive parts of the oesophagus and might trigger spasm pains. For some people, this can even extend to breathing in cold air.
- Hot, or very cold food and drink may cause a problem, probably because of the shock to the oesophagus that this might create. People can experience these heat issues differently from one another, so for one person hot, or cold, water might help; for another it might create a problem. It is sensible to establish what is best for you as an individual.
Diet Guidelines
Having to adjust your diet can be difficult, but there are guidelines that may be helpful to give ideas about what to avoid and what might be comfortable to swallow.
The International Dysphagia Diet Standardisation Framework (IDDSI) contains advice for people who find food difficult to swallow, or who are at risk of aspirating food into their lungs for a variety of different medical reasons, including the elderly. It also gives examples of food and drink according to levels from Level 0 – Thin to Level 7 – Regular. It is not specifically designed for people with achalasia, and you do need to appreciate that you may have individual issues with any given food to establish your own pattern of a problem-free diet but Level 5 – Minced and Moist may be a good starting point, depending on the severity of your problems.
We do emphasise that these are a starting point and you will quite properly adjust them according to experience or further reference.
Need help? Call the helpline on 0300 772 7795 or email info@achalasia-action.org
Need help?
Call the helpline on 0300 772 7795
or email
admin@achalasia-action.org
Hints and Tips
Meals
Reducing food blockages
Some have reported that sparkling water or a carbonated drink may be helpful in reducing the food blockages. Drinks like Pepsi Cola and other soda or carbonated drinks do seem to help with food blockages because of their chemical action. They can be used in other medical situations to clear feeding tubes, for instance.
Drinking
Relief from blockage discomfort
- Try lifting the chest, stretching upwards, elongating the neck and taking deep breaths.
- Getting up and walking around during mealtimes can encourage gravity to help food to pass through into the stomach.
- Massaging the chest area.
- Jumping, or standing on toes and dropping on to heels can sometimes dislodge stuck food.
Toothpaste
Be careful to avoid swallowing toothpaste or mouthwash.
Bedtime
- Sleeping with head and shoulders raised can help prevent reflux or undigested food flowing towards the throat. Use pillows, a bed wedge, rolled blankets underneath the head of the mattress, prop up the feet of the bed, or even consider an adjustable bed.
- Lying on your left side may be better at dealing with the risk of reflux because the oesophagus is connected to the right side of the stomach. This means that lying on your left may help the acid from being pushed back up into the oesophagus.
- It can be helpful to try, if this is realistic, to ensure that the oesophagus is as clear as possible overnight.
Side view, sleep position on right side, lying flat
Nutritional Implications
While some patients with achalasia may lose weight because of impaired swallowing, other patients do not. Research explaining why this may be the case is unfortunately lacking. Consequently there are no formal evidence-based guidelines on diet and nutrition for people with achalasia.
Check carefully about any source of nutritional advice, as this can be given by people without medical qualifications, who may not operate under a code of ethics and who may often have something to sell.
There is ‘no one size fits all’ approach to diet and achalasia. The lived experience can be very different for each and every person with the condition.
Whilst it is generally important to maintain a healthy, balanced diet, the sheer difficulty, for some, of swallowing anything might mean that the details of nutritional value might have to take a lower priority in the short term.
The most serious cases of achalasia may result in malnutrition and weight loss, which impacts on nutritional well-being. You may need to ask your doctor to refer you for nutrition support with a dietitian.
General advice on diet
This website cannot give detailed, individually-tailored dietary advice. If you would like support with your eating and drinking, you can ask your GP about making a referral to a community dietitian. If you are under the care of a hospital consultant, you can ask for a referral to a hospital dietitian. Meanwhile, some general advice includes:
- Keeping a food diary that tracks food eaten against symptoms. It is possible to find out by ‘trial and error’ what works, or does not work.
- A blender or liquidiser is very useful. Blending vegetables and fruits may make them easier to digest. But do be aware that blending can result in loss of fibre content and you may need to compensate for this to avoid constipation.
- Adding olive oil and/or butter to vegetables and potatoes will add additional calories if you are concerned about weight loss.
- Meat can be braised or slow-cooked to make it softer and easier to digest.
Vitamins
Vitamin supplements are normally only necessary if a valid blood screening test from a medical professional has shown a specific deficiency, so if you suspect that you may be low in vitamins or minerals because of achalasia, ask your GP for a test.
The one exception is vitamin D. Vitamin D is really important for bone, tooth and muscle health. From October to early March everyone in the UK is advised to take a daily vitamin D supplement. Children over 4 and adults are advised to take a 10 microgram (400 IU) during the autumn and winter and this might need to be higher if you have achalasia.
People at risk of vitamin D deficiency are advised to take a daily vitamin D supplement throughout the year. This includes:
- People who are not often outdoors – for example, if they’re frail or housebound, or live in an institution such as a care home.
- People who usually wear clothes that cover up most of their skin when outdoors.
- People who have dark skin.
- People with medical conditions which increase vitamin D deficiency.
The NHS guidance on vitamins can be found online:
www.nhs.uk/conditions/vitamins-and-minerals
Vegans
If you are vegan, the same priority about taking food that you can swallow still applies, but the Vegan Society has helpful information including the vegan eatwell guide:
Cholesterol
If you are concerned about your cholesterol levels, perhaps because you are eating certain types of food to avoid losing weight with a diet restricted by achalasia, there is some general advice that you might find helpful available from the British Dietetic Association:
> www.bda.uk.com/resource/cholesterol.html
The British Heart Foundation also has some helpful information about reducing cholesterol:
Websites and books on nutrition and well-being
Websites:
Dr Hazel Wallace, The Food Medic
Maeve Hanan, Dietetically Speaking
Research dietitian Dr Megan Rossi, The Gut Health Doctor, an education hub with lots of useful resources.
Books:
The Diet Myth, Professor Tim Spector
Food Isn’t Medicine, Dr Joshua Wolrich
Eat More, Live Well, Dr Megan Rossi
Pain and Spasms
Pain issues in general
Many people with achalasia have episodes of moderate to extreme pain in their chest area. Sometimes this pain can be caused by nerve/ muscle spasms, sometimes by reflux, sometimes by food being stuck. It is not always clear what causes the pain. It varies between individuals, including how, where and whether we feel it. Pain with achalasia is a particular problem as it is often unpredictable and sometimes occurs without an obvious trigger. It is difficult to explain, difficult to treat and difficult to live with. There is a great range of experience with achalasia.
The body can become used to tolerating pain. People may find that their symptoms change over time; sometimes, for instance, variations in pain occur when the oesophagus becomes dilated.
The sensations can be extreme chest pains that shoot to the back or jaw; they can occur at any time of day but especially at night. People report that the pain is sometimes dull in the background and sometimes sharp and quite intense. Descriptions have included “like a heart attack”, “like I’ve swallowed glass” or “similar to the sensation of cramping hamstring pain transferred to the chest”. It is always important for the pain to be defined and investigated to establish whether it is related to achalasia or not. It is important to rule out causes like a heart attack. Having achalasia does not exclude also having other medical conditions!
Pain occurs because the oesophagus is trying to protect itself and sends signals to try and stop the cause of the irritation. Secondary pain can then occur, which causes an increase in sensitivity after, say, a couple of days of problems. Pain signals are passed through the nerves to the spinal cord and up to the brain which then interprets what is happening in the body. If these pain signals are repeated constantly, the nerves in the spinal cord themselves then become more sensitive and this creates ever stronger pain signals that are passed to the brain.
Pain can be transferred (or ‘referred’) to other parts of the body because of innervation – the way that nerves inter-connect. Investigation of pain has to take into account that the location of the cause of the pain may be quite different from where the sensations are felt.
When pain signals reach the brain they integrate with emotions. They affect how you feel and can rouse anxieties and memories of previous pain.
Some people report chest pain as their first symptom before they are diagnosed with achalasia and sometimes even before they experience problems with swallowing food and drink. Chest pains from the oesophagus can be quite panic-inducing and so severe that when first experienced they can be mistaken for a heart attack.
The oesophagus itself does not have many nerves as such, but the spasms can continue to build up progressively and transmit pain to other parts of the body through the parts of the nerve system in the spinal cord that travel to the heart, arm or jaw and then to the autonomic nerve system that affects sweating, clamminess and palpitations. The effect can be ischaemic (affecting blood supply) and the muscles can then start to run out of oxygen, making things worse.
Irritation as a cause of spasms
Pain felt in the gullet (oesophagus) is often linked to irritation eg by hot or acidic foods, or by food getting stuck. The oesophagus naturally wants to empty itself, so irritation can occur when food remains in the oesophagus rather than being cleared through into the stomach. Saliva normally washes this food residue through to the stomach, and when saliva also gets stuck, this process does not work properly and the irritation gets worse. Spasms can be a reflection of the nerve system dilating the oesophagus and trying to get rid of residual food (as if it is an angry oesophagus).
Irritation can also be caused by acid reflux from the stomach, especially at night when you are horizontal. Reflux can then flow more easily ‘upwards’ into the oesophagus. Reflux can create the pain known as ‘heartburn’ when stomach contents create a reaction from the lining of the oesophagus which is not, unlike the stomach, designed to withstand strong acid.
Sometimes the Upper Esophageal Sphincter (UES, the valve at the top of your oesophagus that prevents food and drink from entering your lungs) does not relax well, and this can trap gas within the oesophagus. Normally this will be burped out, but trapped gas can also be a cause of pain.
Fermentation of residual food in the gullet can also be a contributory factor to irritation.
Causes and triggers of spasms
- If spasms are associated with meal times, the cause might relate to food becoming stuck.
- At other times, food remaining in the oesophagus may cause irritation leading to spasms.
- The lower oesophageal sphincter is often clamped tight shut, causing pain to radiate outwards, leading to shortness of breath, a clutching/squeezing sensation and/or losing one’s breath.
- If spasms and chest pain are experienced at night, it may be more likely to be related to reflux because of being horizontal.
- There can be deterioration of the normally well-balanced nerve receptor (excitatory and inhibitory) activity controlling the muscles for effective swallowing (peristalsis) that translates into pain.
- The vagus nerve system that controls much of the digestive process can develop involuntary movements and reactions.
- Stress is the most commonly reported trigger and will exacerbate symptoms even if it is not the primary cause.
- Environmental factors such as cold air, humidity or changing weather can be relevant.
- Some have reported triggers such as sneezing, coughing, bending or other sudden movements.
- Fatigue or illness can often make things worse.
- Food or drink that is too hot, too cold or too spicy can cause problems.
Treatment for spasms
Because of the range of experiences, medical treatment will depend on establishing the cause of the spasms and pain.
Over time, people with achalasia often find solutions to help avoid painful muscle spasms, which are not caused by reflux, especially if they carry out the techniques that work for them, as soon as they feel a spasm starting. This can include holding a hot water bottle or warm pad on your chest, drinking warm water and relaxing breathing techniques.
Taking notice of triggers for spasm pain is also important. This can include breathing in cold air (wearing a mask can help) or stuck food, or even an empty oesophagus. Just a sip of warm water can make a big difference. Everyone is different though, so it can be trial and error to find out what works for you. Relaxation is important.
Checks can be made for reflux. Even small amounts of reflux can create a reaction. Proton Pump Inhibitor medication such as Omeprazole can reduce the amount of acid created within the stomach. In some cases it may be appropriate to undergo 24-hour pH monitoring to investigate acid reflux. Sleeping with your head raised by means of extra or special pillows, raising the head of your bed, and avoiding eating late in the evening can be helpful to stop reflux creeping towards your throat when you are horizontal. Lying on your left side in bed may also help as the oesophagus joins the stomach on its right side.
Doctors will check for any obstruction in the oesophagus to judge whether an intervention such as dilatation or a myotomy might relieve the condition so as to allow food to pass through into the stomach by gravity.
If the oesophagus is subject to vigorous, uncoordinated muscle contractions, these may cause an obstruction as well as pain. Doctors may prescribe medication to try and relax the oesophagus (eg Nifedipine, angina remedies, sublingual GTN).
External stress is frequently a factor. It can have a direct effect on stomach emptying as it acts as an accelerator on the digestive system and makes it more chaotic. Past experience of pain can be exacerbated by stress. Using relaxation techniques can help.
Psychotherapy and/or cognitive behaviour therapy can be considered.
Prevention of spasms
Research into pain and spasms
Treatment of achalasia is often focused on improving the movement of food through the digestive system, with the management of pain as less of a priority. There has not been much research on medication that might help. It is difficult to analyse random spasms without a pattern if doctors cannot examine the patient when the spasms are actually occurring. Some studies have apparently found that Sildenafil (Viagra) can sometimes help spasms because of its effect on improving blood flow.
In one study (Patti et al, 2008) involving 167 myotomies, 55% had pain beforehand, and 95% improved afterwards. An Achalasia Action survey of 57 people with achalasia in 2017 found that 70% had experienced spasms.
Medication
People with achalasia may need to take medication for other reasons, and if so may need to take extra care because pills may simply remain in your oesophagus rather than reaching your stomach and then being absorbed into your body through your digestive system. The chemicals from the pills might damage your oesophagus which is different in nature from your stomach lining.
- Many medications can be given in liquid or powder form. Your pharmacist can advise you about this, and your doctor might need to specify this on the prescription.
- If you need to take medication in tablet or capsule form, take them, subject to the medication information leaflet, before meals with plenty of water to improve the chances of them passing into your stomach.
Some people do not need to take medication related to achalasia, but information is included below about some associated medication that is not directly aimed at achalasia itself, but may be given to reduce the symptoms in various ways, eg to reduce reflux, or to relax certain groups of muscles to combat spasms.
For severe cases of pain, you should beware of liquid opiates because of the addiction and constipation issues, and should seek specialist intervention to diagnose the cause of the pain.
As always, you should seek medical advice before taking medication, not least because any medication may have unwanted side effects. Some of the medication mentioned on this website may need to be prescribed by a specialist, but might then be able to be continued by a GP.
Proton Pump Inhibitors (PPIs)
The most common medication taken by people with achalasia are proton pump inhibitors (PPIs) that switch off the production of stomach acid. Names of common PPIs include Omeprazole, Esomeprazole, Lansoprazole and Nexium. These are widely used, safe medications, typically taken half an hour before eating (but there is a need to check the label for this). PPIs may be essential for those who suffer from long term reflux.
Reflux occurs when stomach contents seep into the oesophagus from the stomach past the lower oesophageal sphincter (LOS) which should normally act as a valve to prevent this. Achalasia often means that the LOS does not relax, so procedures to improve achalasia can result in the LOS being loosened with the risk that reflux can be increased, particularly when lying down at night. A fundoplication, which wraps part of the top of the stomach around the base of the oesophagus with a Heller’s myotomy, is designed to re-create a valve effect to prevent reflux, but some degree of reflux is still possible after this and other interventions.
As with all medications, side effects may occur. The normal state of the stomach is acidic and we need this gastric acid to help digest our food and absorb vitamins and minerals. The normal level of acidity also allows us to maintain a healthy balance of our own natural gut bacterial flora downstream. In the case of PPIs, the reduction of acid may also reduce the benefits of that acid to promote good digestion and normal gut bacterial flora. Absorption of Vitamins B12 and C, and calcium, iron and magnesium may be affected. PPIs also have some other side effects too, especially if taken longer term. This emphasises the importance of periodic reviews to make sure that you still need to take PPIs.
PPIs only work against acid, and will not be effective against bile reflux (alkali). Stopping PPIs can create a ‘bounce’ effect of experiencing more reflux for some days until your system re-adjusts.
Reflux remedies other than PPIs
There are medications such as H2-receptor antagonists (eg Zantac) and antacids (eg Rennies, Tums), that also combat stomach acid.
Gaviscon Advance is an inert alginate medication that creates a temporary protective raft to defend against both acid and bile reflux generally and can be effective for occasional reflux symptoms.
Sucralfate (also known as Carafate) works in a similar way, but is available only on prescription.
Peppermint Oil
Peppermint oil is an antispasmodic medication that helps to relax muscles in the wall of the bowel (brand names Apercap, Colomint, Colpermin, Mintec) and can be bought over-the-counter.
Buscopan
Buscopan is an over-the-counter remedy that can combat spasms in the gastro-intestinal tract.
Nitrates
Nitrate medications, such as Glyceryl Trinitrate (GTN, brand names: Rectogesic, Minitran), are designed to increase blood flow. They can relieve chest pain and can be helpful, especially against painful spasms. GTN sprays may be useful when it is difficult to swallow.
Calcium Channel Blockers
Calcium Channel Blockers (e.g. Nifedipine) are used to lower blood pressure by reducing the amount of calcium entering the heart and arteries and allowing blood vessels to relax and open. They can also be used for some other conditions like angina.
Sildenafil (Viagra)
Diazepam
Medical cannabis (CBD)
"Sometimes mixing the textures of food helped the food pass through into my stomach more easily. I also found trying just small mouthfuls of this food at any one time may enable you to judge whether there are any adverse effects."
See how Achalasia can be treated