Oral immunotherapy: Food drops - instructions for use

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Contents

(By Dr Sarah Myhill and Craig Robinson)

The detailed theory of, and supporting evidence for, this form of therapy can be found here: Oral immunotherapy: switching off food allergies using food. In essence, the idea is to modify the immune system response to new foodstuffs and/or foodstuffs that patients are currently suffering allergic reactions to, so that, over time, the immune system comes to regard these foodstuffs as acceptable "background noise", rather than as antigens to which the body must react!

This process is done very gradually by introducing these foodstuffs into the patient’s diet at initially extremely low levels and then by slowly increasing these levels until the patient has what might be termed "normal" levels of that particular foodstuff in their diet. At this point, the patient will have had that food allergy ‘’switched off’.

Storing and using the drops - practical details

  • The food drops will be supplied in 10 ml or 20 ml bottles, with coloured labels denoting strength: the weakest has a GREEN label, increasing through AMBER and RED to the strongest solution with a WHITE label. For the sake of simplicity, I shall be talking about "the GREEN bottle", "the RED bottle", "the WHITE bottle" rather than the clumsy "a bottle with the GREEN label" etc.
  • When you receive these drops, place them immediately in the deep freeze.
  • When you are ready to use a bottle, allow it to defrost naturally (not in the microwave). These will keep safely in a fridge for a week. The food drops are made up with vitamin C as a preservative and it is this preservative that allows safe keeping of the food drops during posting and in a fridge for up to a week.
  • The vitamin C used is sourced from sago as sodium ascorbate, which means that it is very unlikely that anyone will react to this form of preservative. However, those patients who feel that they may suffer an allergic reaction to this form of Vitamin C preservative should email the office so we can send you a sample to test.
  • At the end of the week, if you have not used a full bottle (likely during the early weeks), then discard that bottle and start with a fresh bottle from the deep freeze.
  • If your "fridge bottle" runs out before the week is over, then simply use a fresh bottle from the deep freeze. Just take care that you never use drops from a bottle that has been longer than one week in your fridge.
  • I estimate that the average person will need 10 bottles of each strength before they can move up to the next stronger dose. However, this will vary from individual to individual and we shall learn more from experience.

The idea is to start with the weakest strength in the GREEN bottle (1 mg per ml), then move up to the AMBER bottle (10 mg per ml), then the RED bottle (100 mg per ml) and then finally the WHITE bottle (1,000 mg or one gram per ml).

IMPORTANT NOTE: - Whilst taking the food drops, continue to eat your normal “safe” diet.

Dose

You will find a typical food drops regime over several months at the bottom of the page. But first, the principles of dosing.

The principles of dosing the food drops

Start with the GREEN bottle, which contains 1 mg of total food per ml.

Start off with just one drop per day from the GREEN bottle. Little and often is the name of the game – so increase this starting dose to one drop three times a day with normal meals. Then increase the number of drops per meal. As long as you have no side effects, keep on increasing your dose until you can consume a whole bottle a day of the GREEN bottle food drops, with no reaction. A whole 10 ml bottle of the GREEN contains 10 mg of total food and so at this point the patient is tolerating 10 mg of total food per day, with no adverse reaction.

It may take several weeks to move on to the full dose from this bottle, the full dose being that you are consuming 10 ml of the GREEN bottle a day with no adverse effects. The key is NO ADVERSE EFFECTS! we are trying to "dupe" the immune system into not reacting!

At this point move to the AMBER bottle, which contains 10 mg of total food per ml

At this point we know from the above that you can tolerate 10 mg of food each day – so go to 1/3 ml (10 drops) of the AMBER bottle drops three times daily. This maintains your dose at 10 mg of food per day. A little maths will clarify this: three lots of 1/3 ml per day (3 x 1/3) equates to 1 ml of food drops per day. 1 ml of drops in turn equates to 10 mg of foodstuff because the AMBER bottle drops contain 10 mg of total food per 1 ml.

Then, as long as you have no side effects, gradually increase the dose until you are able to consume a whole AMBER bottle each day with no side effects. A whole 10 ml bottle of the AMBER contains 100 mg of food and so at this point you are tolerating 100 mg of total food per day, with no adverse reaction.

It may take several weeks to move on to the full dose from this bottle, the full dose being that you are consuming 10 ml of the AMBER bottle a day with no adverse effects. BE PATIENT!

At this point move on to the RED bottle, which contains 100 mg of total food per ml.

At this point we know from the above that you can tolerate 100 mg of total food each day – so go to 1/3 ml (10 drops) of the RED bottle drops three times daily. This maintains your dose at 100 mg of food per day. The maths is the same as above - three lots of 1/3 ml per day (3 x 1/3) equates to 1 ml per day, which in turn equates to 100 mg of foodstuff because the RED bottle drops contain 100 mg of foodstuff per 1 ml.

Then, as long as you have no side effects, gradually increase the dose until you are able to consume a whole RED bottle in a day with no side effects. A whole 10ml bottle of the RED contains 1000 mg [i.e. one gram] of food and so at this point the patient (you) is tolerating 1000 mg [or 1 gram] of total food per day, with no adverse reaction.

It may take up to six weeks to move on to the full dose from this bottle, the full dose being that you are consuming 10 ml of the RED bottle a day with no adverse effects.

At this point move to the WHITE bottle which contains 1,000 mg (one gram) of total food per 1 ml. This mix looks like a thick soup.

At this point we know from the above that you can tolerate one gram of total food per day.

So, once again go to 1/3 ml (10 drops) of the WHITE bottle drops three times daily. This maintains your dose at 1 gram (i.e. 1000 mg) of food per day because three x 1/3 ml per day equates to 1 ml per day, which in turn equates to 1 gram [1000 mg] of foodstuff because the WHITE bottle contain 1 gram (1000 mg) of foodstuff per 1 ml.

Then, as long as you have no side effects, gradually increase the dose until you are able to consume 10 ml of the WHITE bottle each day with no side effects. A 10 ml bottle of the WHITE drops contains 10 grams of food and so at this point the patient (you) is tolerating 10 grams of foodstuff per day, with no adverse reaction.

HOORAY ! YOU MAY HAVE ARRIVED!

It may be that at this level you are able to tolerate normal doses of foods that you had previously reacted to. However, in the peanut study, the allergics were asked to eat up to 5 peanuts daily to maintain oral tolerance. One peanut weighs about one gram. This experience suggests that we need to continue to take up to 5 grams daily of our offending foods to maintain oral tolerance.

However, I suspect that, with shared antigens, 5 grams of a ten food mix will be sufficient to maintain oral tolerance for that group. Watch this space for further advice! But for more specific and current advice on an acceptable maintenance therapy, please see the next section.

Maintenance therapy – current advice (May 2014)

The white container has pure food with no dilution. So one hundred foods means one hundred grams of total foods. This is rather a lot to consume! So I suggest at this point you need to choose the food groups that you know you have had a problem with and/or the food groups that you particularly wish to eat, and concentrate on these. You need to consume at least 1 gram and possibly up to 5 grams of each food group daily to maintain tolerance (this is a very steep learning curve!). This will be supplied in individual WHITE pots containing 35 ml (1 gram per 1 ml) of each ten food concentrate. Therefore each WHITE pot containing 35 ml of the liquid will last one week as the patient will consume up to 5 grams of the ten foods in 5 ml each day for seven days.

So, for example, if you wish to maintain oral tolerance to fish, nuts and dairy, then you need a pot of each and you need to consume 1-5 grams daily of each.

Of course, another possibility is simply for you to purchase these foods yourself and include them, in small amounts, in your regular diet. In planning this, remember one peanut weighs about one gram and that one ml of water weighs one gram.

Adjusting the dose and frequency

The peanut anaphylaxis trial showed that the commonest side effects were mostly mild. Gastrointestinal symptoms were the most common (31 participants with nausea, 31 with vomiting, and one with diarrhoea), followed by oral itching (after 6.3% of doses) and wheeze (after 0.41% of doses). Should you develop any side effects (which you may recognise from previous experience), reduce the dose until the side effects disappear.

How long does it take?

The peanut anaphylaxis trial took 6 months for the children to go from 2 mg per day to 800 mg per day. This is biologically plausible – the bone marrow delivers a new population of blood cells roughly every 3 months. These new white cells coming out from the bone marrow will learn to ignore the “background noise” coming from the multiple food drops.

However, the rate at which you go will depend entirely on your own individual reactions! If you experience no side effects then the dose can be increased. If you experience any side effect, then reduce the dose to a level at which you feel nothing. We are all on a steep learning curve here so feedback is most welcome!

IMPORTANT WARNING:-

Any patient who has ever had an anaphylactic reaction from a food should not include that food in their desensitisation unless they are being overseen by an experienced doctor and/or a hospital with full resuscitation equipment.

Please note that the potential for harm using the above system of Green, Amber, Red and White bottles is miniscule, but one should always err on the side of ultra-caution when dealing with desensitisation. For this reason, to avoid confusion, I shall only supply one colour strength at a time - that way I can check from the clinical notes that the concentration is being sent in correct order

A Typical Regime

Month one (or possibly 6 weeks): - GREEN BOTTLE

Day 1 – one drop of GREEN once daily
Day 2 - one drop of GREEN twice daily
Day 3 – one drop of GREEN three times daily
Day 4 – 2 drops of GREEN three times daily etc etc

Over the course of one month (or possibly 6 weeks) – gradually increase – until 10ml of the GREEN bottle can be consumed daily with no side effects (total dose 10mgs).

Month two (or possibly 6 weeks): AMBER BOTTLE

Day 1 – 1/3ml of AMBER three times daily
Day 2 – 1/3 ml of AMBER three times daily
Day 3 - 1/3 ml of AMBER three times daily
Day 4 – 2/3ml of AMBER three times daily
Day 5 – 2/3 ml of AMBER three times daily
Day 6 – 2/3ml of AMBER three times daily
Day 7 – 1ml of AMBER three times daily etc etc

Over the course of one month – gradually increase – until 10ml of the AMBER bottle can be consumed daily with no side effects (total dose 100mgs).

Month three (or possibly 6 weeks): RED BOTTLE

Day 1 – 1/3ml of RED three times daily
Day 2 – 1/3 ml of RED three times daily
Day 3 - 1/3 ml of RED three times daily
Day 4 – 2/3ml of RED three times daily
Day 5 – 2/3 ml of RED three times daily
Day 6 – 2/3ml of RED three times daily
Day 7 – 1ml of RED three times daily etc etc

Over the course of one month – gradually increase – until 10ml of the RED bottle can be consumed daily with no side effects (total dose 1,000 mg or one gram).

Month four (or possibly 6 weeks): WHITE BOTTLE

Day 1 – 1/3ml of WHITE three times daily
Day 2 – 1/3 ml of WHITE three times daily
Day 3 - 1/3 ml of WHITE three times daily
Day 4 – 2/3 ml of WHITE three times daily
Day 5 – 2/3 ml of WHITE three times daily
Day 6 – 2/3 ml of WHITE three times daily
Day 7 – 1 ml of WHITE three times daily etc etc

Over the course of one month – gradually increase – until 10 ml of the WHITE bottle can be consumed daily with no side effects (total dose 10 grams).


Month five and thereafter: WHITE POT MAINTENANCE DOSE

Choose a WHITE POT of the food group that you know you have a problem with or of a food type that you particularly wish to eat (if not sure – do all ten bottles!). Consume initially 1 gram then up to 5 grams per day of each food type that you have selected.

In the longer term

At this point you should be able to eat more normal amounts of foods and include them regularly in your diet. Initially, you should aim to eat some of that food every day. I suspect that in the longer term once the desensitisation is robust and your white cells correctly programmed then this will no longer be necessary.

Cost

Five of the 20 ml bottles of any strength costs £50 plus p and p. No VAT. This should be sufficient (no guarantees!) for one stage of desensitisation before proceeding to the next strength. Please note that the food drops are posted to UK addresses only.

Related articles

Oral immunotherapy: switching off food allergies using food


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