After 7 years of avoiding pancreatic enzyme replacement therapy (PERT), I finally asked for some on a trial basis. To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs). I’ve always known I’ve had some digestive issues related to malabsorption. However, I’m not losing weight – this has been stable for some years. Plus my key vitamin levels (B12 and D) are in range. However, I’ve been struggling with a lot of bloating issues in the last couple of months, thus the trial. You know me, I like to research and analyse such things! I’ve actually written about a lot of these issues in my Nutrition series ….. so this is now ‘Article Number 5’.
Some of the common symptoms of NETs are gas, bloating, cramping and abdominal pain and the root cause of these issues can sometimes be as a result of insufficient ‘digestive’ enzymes. They are primarily produced in the pancreas (an exocrine function) and the small intestine but also in the saliva glands and the stomach. This post will focus on pancreas and to a certain extent, the small intestine. There are actually some key tell-tale signs of a pancreatic enzyme deficiency, such as steatorrhoea which is described as an excess of fat in faeces, the stool may float due to trapped air, the stool can be pale in colour, may be foul-smelling, and you may also notice droplets of oil or a ‘slick’ in the toilet pan. Steatorrhoea is mainly due to malabsorption of fat from the diet and this can actually be caused or made worse by somatostatin analogues which are known to inhibit the supply of pancreatic enzymes. Of course if fat is not being absorbed, then the key nutrients your body needs to function properly might not be either. The signs from that might not be so noticeable but can be even more problematic over time. Please see Article 1.
Those who have had surgery, in particular, in GI tract/digestive system, are at risk of malabsorption; as are those prescribed somatostatin analogues (Lanreotide/Octreotide) as these drugs can inhibit digestive enzymes, causing or adding to the malabsorption effect. For those who need to read more, see Article 2.
One way to combat these issues is with Pancreatic Enzyme Replacement Therapy (PERT) which can mimic the normal digestive process. However, this is not the whole story as there could be numerous reasons for these issues, perhaps even some which are unrelated to NETs. If you are in doubt about whether you suffer from malabsorption and/or any form of digestive enzyme insufficiency, you should consult your doctors.
Pancreatic Enzyme Replacement Therapy
Many NET patients succumb to malabsorption issues and as a result are given Pancreatic Enzyme Replacement Therapy, or PERT for short. There are various brands available (e.g. Creon®, Nutrizym®, Pancrease HL® or Pancrex®). Most are in capsule form in various doses.
How does PERT work? Most people experiencing the issues above are going to benefit from a multiple-enzyme replacement which tend to include the key ones such as:
- protease which breakdown proteins (e.g meat, fish, seafood, dairy, nuts, etc)
- lipase which break down fats (e.g from many different foods)
- amylase which breaks down starchy carbohydrates (e.g. potatoes, bread, rice, pasta, cereals, fruits, fibre, etc).
The dose sizes tend to be based on the amount of lipase, i.e. a 25,000 strength would mean 25,000 units of lipase and (normally) a lesser amount of amylase and protease (it is with Creon). The entire mix of enzymes may be given a name, in my case it’s ‘Pancreatin’. You will be given a number of capsules to be used from your prescribing doctor.
The pancreatic enzyme capsule is swallowed along with food and digests food as they pass through the gut. If your capsules contain an enteric coat or enteric coated granules (delayed release), they should not be affected by stomach acid. The replacement enzymes will help to break down food allowing the nutrients to be absorbed beyond the stomach (i.e. in the small intestine). Do not be alarmed at the dose sizes, a healthy pancreas will release about 720,000 lipase units during every meal!
Frequently Asked Questions (FAQ)
When I first started taking the supplements, I thought of numerous questions, many of which I could not find definitive answers to! Different sites say different (and contradictory) things. Clearly, you should always consult your prescribing doctor and the medicine patient information leaflet. That said, I found the patient information leaflet which came with the capsules is just not detailed enough for an inquisitive patient such as myself!
I always like to refer to best practice which is why I’ve consulted one of the top NET Dietitians (Tara) and she has agreed to an online Q&A session HERE (date and timings to follow). Once this session has taken place, I’ll update this article with the output of this session. Depending on how this goes, more sessions are planned (tbc) so it’s worth taking a place in the group (lurking is fine!). I need sufficient numbers before I can set it up. This is actually a new project for 2018 to provide an ‘educational’ place but with some privacy, on a worldwide basis, and with expert input when required.
I’ve always known about issues such as steatorrhoea and vitamin/mineral deficiency. My weight is fine but very happy to trial PERT to see the differences. I made a mistake of starting the capsules on Dec 23rd just before Christmas – it made for an interesting week! Early days so far but I’m getting used to taking them (and remembering to take them ….). Still seeing signs of steatorrhoea but am tracking this against diet, No change to stool frequency. I would appear to be belching more though!
In the meantime, I’d love to hear about your experiences so I can formulate some questions for the sessions – you may have a question already prepared? Also if you could give me some indication if this is a Q&A session you would like to take part in, please let me know. You can either comment here, on the Facebook entry or message me here.
You may also enjoy these articles:
“Nutrition Article 1 – Vitamin/Mineral Risks” – click here.
“Nutrition Article 2 – GI Malabsorption” – click here.
“Nutrition Article 3 – SIBO/Probiotics” – click here
“Nutrition Article 4 – Food for Thought – amines etc” – click here
Thanks for reading