My name is Charlie Arnold, I am a 48 year old single mum to Megan who is nearly 12 years old. We live in Sussex in the UK. I qualified as an Osteopath in 1990 and have been treating animals since then until last year when I had to give up work due to the pressures of dealing with a child with a rare condition that required a lot of specialist cooking, trying to cope with lack of sleep etc. Both my daughter and I are keen horse riders but even that had to take a back seat until recently as she just didn’t have the energy for it until we got her diet right. However, little did I know that my Osteopathic Medicine training would become so useful.
What is Fructose Malabsorption?
Fructose Malabsorption is a condition that affects the persons ability to absorb fructose (a sugar found in fruits, vegetables, most sweeteners as well as many other foods). Not much is known about it but there seems to be two types:
- Hereditary – where the protein carrier is absent in the small intestines to carry the fructose through the villi into the blood stream. Symptoms start as soon as you start weaning or using certain formulas.
- Acquired – where the villi have been damaged due to a gastro-intestinal virus or other damage to the small intestines. This type is less serious as with time the villi will heal and more fructose can be tolerated. Symptoms will start later in life.
- Bloating (from fermentation in the small and large intestine)
- Diarrhea and/or constipation
- Stomach pain (as a result of muscle spasms, the intensity of which can vary from mild and chronic to acute but erratic)
- Vomiting (if great quantities are consumed)
- Early signs of mental depression
Symptoms are most noticeable a few hours after eating anything containing high fructose but can take a few days to build up if smaller amounts are eaten. It can be differentiated from another more serious disorder Hereditary Fructose Intolerance which causes liver problems and jaundice and has a much quicker reaction to fructose in any amount.
What symptoms distinguish Fructose Malabsorption to other conditions?
The symptoms are not immediately noticeable, they usually develop a few hours after consuming foods that are high in fructose and there are no allergy symptoms (ie hives, swelling, difficulty breathing). Excess gas is often a good indicator that FM may be the problem. Diarrhea is difficult to use as a differentiation as there are a number of conditions that can cause this.
Tell us about your road to diagnosis….
It is becoming more recognized now but still the process of diagnosis is long. Megan was the perfect baby until I started to wean her at 4 months old then gradually she became very ill, very bloated, constantly sick and went down with every virus going. At first they had to eliminate the obvious intolerances of lactose and gluten until our GP eventually mentioned the possibility of sugars being a problem. Age 2 she was diagnosed with Helicobacter Pylori as she used to scream with pain at night and after many a night trip to the doctors they did a breath test which was positive. This solved the screaming pains but not the sleeping problems, bloating, vomiting and diarrhea.
She also used to pass out, or blank out and incontinence was still a serious problem age 4 with school looming. I then took the initiative and did an elimination diet and as soon as I added any vegetables or fruit back into the diet all her symptoms came back. Armed with this information I asked the pediatrician about it who referred us to Queen Mary’s Hospital in Epsom where she undertook a Fructose Hydrogen Breath Test. Basically the patient fasts for 12 hours, then breaths into a machine to measure hydrogen particles in the breath. They are then given a fructose solution to drink and every 15 to 30 minutes another breath sample is read. Anything over a 10 was a positive reading, and Megan’s, after an hour, shot up to 124 which was way off their graph. Suddenly everyone ran into overdrive in a panic but she was quite happy playing with the toys. Her symptoms of course all started after we left the hospital and continued for several days. As a result a diagnosis of Fructose Malabsorption was made and we were furnished with a sheet about the Low FODMAP diet and advised to “look it up on the internet” as that is as far as their knowledge went.
The FODMAP diet is a diet specifically designed for conditions such as Fructose Malabsorption and works on the principle that foods with an equal ratio of fructose to glucose can be tolerated as the fructose molecule uses the glucose to pull it through the wall of the small intestine. Therefore vegetables like lettuce, celery, cucumber, carrot, and fruits such as tomatoes, berries, grapes, oranges and lemons can be eaten without discomfort. Table sugar is also tolerated as it is equal in quantity. Patients also have to be careful with foods such as wheat, onions, garlic and legumes due to fructans. Some also struggle with lactose. As long as the diet is adhered to symptoms should improve considerably although some find they are more restricted than others. They must also be very careful with artificial sweeteners – the polyols like sorbitol, xylitol, maltitol etc.
Unfortunately Megan didn’t improve completely on the diet and especially didn’t tolerate sugar which led us to further investigations as she was still incontinent a lot of the time and blanking out. However the diarrhea and bloating improved on the restricted diet but not her energy levels leading us to further tests which ultimately diagnosed Congenital Sucrase-Isomaltase Deficiency as well (however that is for another day……). Now we have a full diagnosis things are getting better and better but it has taken a long time, a lot of patience and experimentation.
What would you like to say to parents searching for a diagnosis?
Learning to cope is the hardest bit as you are really left to it. There are a lot of resources available on the internet and you do have to rethink how you approach meals. These days we are told that 5 portions of fruit and vegetables are essential to healthy living….. wrong! My daughter is on the 75th centile for growth and the 50th for weight and has had very little since the age of 4.
The theory that meals have to be varied also needs to be rethought as choices are limited. Once you get used to it there is a lot of choice, and you can still make meals fun for them but the more wrong foods you eliminate the healthier the child will be. If you “cheat” then water builds up quite quickly in the bowels causing discomfort, bloating and flatulence leaving you feeling lethargic for days.
It is often very frustrating as others don’t see what you have to deal with on a daily basis, many will suggest a little extra won’t hurt but it will so you do have to be very hard, trust your instincts and your child will grow up to be a healthy and happy child.
Can you suggest some useful links and resources?
There are a lot of good food databases available now on the internet so you can look up foods values to see what you can use.
I started a proboard to gain information on this topic and more in depth information can be found on there:
I have also started a pinterest board that covers recipes for both of our conditions: