Teresa Scruton is not a physican nor a nutritionist but she has been a person with hereditary angioedema (HAE) as well as a researcher for many years. Below she shares her own personal approach for dealing with the aftermath of an HAE abdominal attack in the hope that combined with consultation with physicians it may help others.
It’s often best to rely on anti-nausea meds like ondansetron (Zofran, Zuplenz) or/and promethazine (Phenergan, Phenadoz, Promethegan) for a day or two, as prescribed, until you can drink and eat normally again without nausea.
Hydration: Without adequate hydration, you will stay nauseated, weak, tired and feel very sick.
You can even develop hypovolemic shock. This is one of the most serious and sometimes life-threatening complications of dehydration. It occurs when low blood volume causes a drop in blood pressure and a drop in the amount of oxygen in your body (Mayo Clinic).
How much fluid should I drink each day?
The Institute of Medicine determined that an adequate intake for men is roughly about 13 cups (3 liters) of total beverages a day. The average intake for women is about 9 cups (2.2 liters) of total beverages a day. Larger women may need more than this and smaller men may need less.
So if you have lost a lot of fluid from vomiting and/or diarrhea, you need even more fluid to replace that which was lost. You may not be able to do it in the first day after an attack. The goal would be to get as close to 9 cups of water per day in those early days. Afterwards when you are back to a regular diet, drink at least 9-13 cups of water per day to keep your mouth and nasal passages moist, to help your skin, and to help your G.I. tract move things sweetly instead of painfully. It also helps your kidneys and liver metabolize many of the meds we take.
Water – drink slowly, but enough during the day to get hydration. Sometimes even water hurts. That’s normal because the inside lining of your stomach and bowels is still hotly inflamed. But drink the water anyway in small sips frequently enough to get/stay hydrated.
🍹Do not use a straw. Straws can cause air to get into the stomach and bowel and set up nausea and cramping again.
Diluted decaffeinated tea in between slowly drinking a glass of water is often OK.
🔴DO NOT DRINK
📌Citrus juices – the acid in citrus drinks such as orange juice can hurt because the gastric lining is inflamed.
📌Caffeinated tea or coffee – caffeine can cause more cramping. See 🆘 below.
📌Carbonated drinks – such as Pepsi, Coca-Cola, etc. can cause nausea in the period of time shortly after an abdominal attack. In the lower G.I. they can cause cramping. See 🆘 below.
🆘 Alcoholic drinks – Alcoholic and caffeinated beverages, such as coffee, teas, and colas, are not recommended for optimal hydration. These fluids tend to pull water from the body and promote dehydration. Fruit juice and fruit drinks may upset the stomach (from The Cleveland Clinic).
Heavily sugared drinks can cause cramping.
Milk and even some non-milk substitutes can cause cramping in the lower G.I. and nausea.
Chocolate drinks can cause cramping.
Eat small portions of each one of these foods listed below.
Sometimes I do better with half a cup of food 4–6+ times during the day, and other times I do better just taking a spoonful of food, every few minutes, eating very very slowly throughout the day. If I start feeling symptomatic, I slow way down or stop the food, and just focus on staying hydrated.
The BRAT Diet – Modified slightly
🍌 Banana: One fourth of a banana at a time
🍚 Rice: a small amount 1/3-1/2 cup of heavily over-cooked, very soft white rice with a little salt
🍎 Applesauce: Small portion of plain applesauce – sometimes even this is difficult
🍞 Toast, plain or with a small (really small) amount of butter and/or jelly
👉 Best not to eat all of these at one time, at first. This might be too much food at one meal. Trial and error
GREAT for hydration!
Avoid acidic soups like tomato, and creamed soups or chili.
Sometimes just the clear liquid from a vegetable soup is good.
🍲Chicken broth – oddly, chicken broth almost always makes me sick. I have tried organic, expensive chicken broth, and still get nauseated. But I don’t get nauseated from homemade chicken broth. And it’s less expensive than the organic chicken broth. I just boil chicken breasts for a really long time until they are supersoft and fall apart. Then I stick the boiled chicken breasts in their water in the refrigerator, and later skim off the fat that at the top. I only add a little salt. I don’t use pepper at all. It always hurts me. I don’t use any celery or even celery salt, it doesn’t seem to agree with me.
🔵It’s best to keep what works for you on hand in your kitchen at all times because you never know when an attack will strike. Or you might know if they are frequent. And if they are, I’m so sorry.
You cannot stay on this VERY limited diet for weeks at a time. It does not give you enough nutrients and micro nutrients. But if you are careful with this diet, it should help you transition into regular foods.
When you resume your regular diet, make sure that you are getting the nutrients and micro nutrients that you need. You generally do not find these in fast food. I’m sorry, that’s just the way it is. So you need to eat green beans, leafy greens, fruits, protein, healthy fats, and healthy carbohydrates in their proper form as tolerated. Again, not in fast food.
🔴 A word about gluten: many people have found that going gluten-free helps with the severity of their attacks. Check it out, it’s not that hard now that more people are going gluten-free. You can find a really good selection of gluten-free bread, even excellent cookies and crackers in the markets now.
🔴 A word about fats: food with lots of butter, cheese, and fatty meats can give you nausea and cramping. (Not getting into the whole good fat bad fat, good cholesterol bad cholesterol thing here, thank God). Hard to digest foods such as steaks, fried foods are better later, sparingly. Too much of these foods set up a bad situation in the digestive tract, often making attacks worse when they occur.
🔴A word about gassy foods: onions, garlic, beans, cauliflower, etc. can really hurt when they cause gas that cannot be released from the bowel because of swelling.
🔴A word about high fiber foods: we all know that fiber is good in your diet. But for people with chronic abdominal attacks, lots of fiber can really hurt. Even a non-HAE person can not tolerate too much fiber. I knew a woman who was dieting and ate 6 apples a day. She started having terrible stomach cramps, diarrhea with some bleeding, and some vomiting, went to her doctor who told her after undergoing diagnostic testing, that she was tearing up her bowel wall with all that fiber. One apple a day is usually fine. You will know what you can tolerate. Maybe pears, bananas, apples minus the skin, etc. Some people find that fruit in Jell-O cups is a good alternative when fresh fruits aren’t available. Plus, the Jell-O can be good for your hair and nails.
🔴 A word about vegetables. Some people cannot tolerate vegetables that have a fibrous content, even corn and peas surprisingly. Cauliflower, asparagus, are examples of vegetables that can hurt the bowel. Find out which vegetables you can tolerate in which you can’t.
🔴A word about gastroparesis. Gastroparesis, also called delayed gastric emptying, is a disorder that slows or stops the movement of food from the stomach to the small intestine. Normally, the muscles of the stomach contract to break up food and move it through the gastrointestinal (GI) tract. Gastroparesis can occur when the stomach muscles stop working normally. Food and even fluid then moves slowly from the stomach to the small intestine or stops moving altogether.
Gastroparesis – like symptoms can occur when the small bowel, which is in between the stomach and the colon, or large bowel, swells, preventing normal movement of food and liquid through the G.I. tract. That HAE swelling mimics gastroparesis. Symptoms are stomach pain, vomiting, lots of belching, and acid reflex (National Institute of Diabetes and Digestive and Kidney Diseases).
When it’s pretty bad, it’s difficult to even swallow water. If the HAE meds don’t stop this within a few hours, you are going to have to forgo all foods, and drink water in very small amounts. If this doesn’t last very long, you can deal with it at home. But if it goes on like this for a day or more you are going to be very dehydrated and will need medical intervention most likely. Small bowel swells are nasty buggers.
🔴A word about laxatives: high fiber laxative can often hurt, an alternative is MiraLAX. If you tend to be constipated, talk to your doctor about your options. Constipation plus a bad swell in the bowel means worse pain. Don’t hurt yourself.
🔴 Some people are so sensitive that they have to rely on totally organic foods, without any additives. Many of those additives (the chemical stuff on the label that you can’t pronounce) seem to cause more stomach distress. If so, avoid them. I wanted to put a list of these additives here but it’s far too long. But one of the big problem additives for a LOT of people is magnesium stearate.
🔴A word about magnesium stearate: it is an anti-adherent and has lubricating properties, preventing ingredients from sticking to manufacturing equipment during the mixing process (Wikipedia). Magnesium stearate is non-digestible in humans. Many people are very sensitive to this non-digestible additive. It makes them very nauseated. So they check labels for this particular additive. You will also find it in over the counter supplement pills, vitamins, and even prescription drugs. There are some online vitamin and supplement companies that do not use magnesium stearate. Just google the terms “vitamin, magnesium stearate.”
🔴 A word about pre and probiotics: Probiotics are “good” bacteria that help keep your digestive system healthy by controlling growth of harmful bacteria. Prebiotics are carbohydrates that cannot be digested by the human body. They are food for probiotics. The primary benefit of probiotics and prebiotics appears to be helping you maintain a healthy digestive system (WebMD).
You can find both at your health food store, your local pharmacy, or online. Look for ones without magnesium stearate if the ones you find make you sick to your stomach. My doctors office’s formulary actually includes one probiotic, “Culturelle” and she prescribed it for me years ago, but my health insurance provider promptly denied all probiotics so I pay for it myself. You can find coupons online that reduce the price. Probiotics really help me, and I take one daily.
🔴 Which leads us to: vitamins, mineral supplements, and other stuff
Do we need to take them? It depends. If your diet is merely “suboptimal,” there’s no convincing evidence that you’ll benefit from a multi. If, however, you have severe deficiencies (because of malnutrition, for instance, or absorption problems), targeted supplementation, under medical supervision, may be necessary. If you are living totally on junk food, no supplement— even one with dozens of components—can make up for the vitamins, minerals and other potentially beneficial compounds found in vegetables, fruits, whole grains and the rest of a healthy balanced diet (Berkeley Wellness).
For those of us who have frequent, severe abdominal attacks, it seems clear that we do need to take at least a multivitamin every day. Some of us with frequent, severe attacks develop folic acid deficiencies which lead to anemia, and need to take a specialized supplement daily. Others develop different conditions that require vitamin or mineral or other supplements.
🆘 IMPORTANT NOTE: If you are still struggling, and food hurts or makes you very nauseated and or you are still having a lot of cramping despite religiously following this diet, you might ask your doctor about a medication called sucralfate (Carafate). It heals the inflamed portions of your stomach and bowel. It can be a miracle worker. It comes in a lozenge, liquid, or pill. I have tried all three over the years, and find the pill works best for me. It’s really huge, and although you aren’t supposed to, I break it in half and then swallow it, or if I am really swollen in my upper G.I. area, I let it soften with a sip of water in my mouth before swallowing it. It takes about a week of using it as prescribed before you start noticing a big difference. But truly it can make life a lot easier. It is not a narcotic, so no problems there. With frequent attacks, you might need to take it daily.
🆘 A word about diagnostic testing: it’s good for people with HAE to get EGD/colonoscopy testing per your doctor’s recommendation. Intestinal problems can be really minor but cause you a great deal of distress on top of HAE abdominal attacks. It’s good to clear up those problems, take care of your G.I. tract, and rule out any other complications in there. If I can do it you can do it!
🔵 It’s a process to get your G.I. tract ready for regular foods after attacks, and it’s a process to get your G.I. tract back to normal after weeks/months/years of very frequent, very severe attacks. Sometimes talking to a nutritionist is very helpful. Many of us know very little about food. We just know what we like and don’t like. A nutritionist can help you develop a diet/lifestyle that is best for you. Almost always insurance companies will pay for one to three or more sessions with a nutritionist. They will not know about hereditary angioedema, but they do know about severe gastrointestinal illnesses. Plus, it’s an opportunity to spread the word about hereditary angioedema!
🔴 People frequently think that food itself causes abdominal attacks, because after eating, they experience the full range of symptoms of an abdominal attack. Researchers do not find this to be the case, but eating the wrong foods and too much of them shortly after one attack can cause so much distress that it may, despite what researchers think, precipitate another attack in my experience. Eating healthy at the right times, eating very carefully right after the worst of the attack, caring for your intestines (yes, I did write that), can help you get through those first few days without further distressing the gastrointestinal tract. That’s the goal. To live with this disease, respect what misery and pain the disease can bring, and give your body the proper nutrients it needs in order to deal with abdominal attacks.
🙏 Wishing you less frequent, much less severe HAE attacks,
Your friend in HAE,
About the Author: Teresa Scruton is a tireless advocate and educator for HAE. A former Federal Research Project Coordinator and retired Federal Research Compliance Officer, she truly understands the challenges rare disease patients face. She would love to see all with HAE have access to the medications they need and wants HAE diagnoses and treatment protocols added to emergency room doctors’ apps. She hails from Nebraska!