6 Diet infringements / slipups / challenges 

6.1 General

Our private experience tells us that the child will go through several phases of different behaviour after a challenge.

First phase   duration 24 - 96 hours    Relatively calm, communicates less than normal, function somewhat decreased.  Pupils tend to be somewhat constricted.  The phase is easy to overlook if the child is not performing evenly.

Second phase   duration 6 - 21 days  Uneasy, hyperactive, restless, function much reduced.   Lies down and screams if stressed (i.e. if asked to go indoors or come out of a shop or whatever).  Pupils tend to be dilated.  Language is used less for structured communication and more for self stimming.

Dr. Cade has described in an article (and in a lecture I was lucky enough to hear) how rats, when injected with gluteomorphine or caseomorphine, behave more or less exactly like this.  He identifies two more stages.  These are less easy to discern in humans, partly because we talk about small doses, partly because human behaviour is far more complex, and partly because the rats (having an otherwise normal biochemistry) break down the stuff much faster:  It's a matter of hours instead of days and weeks.   

6.2 Quicker and slower reactions

Some people experience far quicker reactions than we see in our son:  Quicker to come and quicker to go.  This probably has to do with differences in enzyme activity and gut permeability.

Some people see no reaction at first, when they reintroduce gluten after a while on the diet.  They step up the dose gradually, and nothing seems to happen.  A few of these have reported that nothing more happened, even months later.  The typical reaction is, however, to find a gradual regression starting 4 - 8 weeks after gluten is reintroduced.  Why?

Our interpretation of this is that there could be several factors contributing to such a result.  The two most promising of these seem to be:

a)  The "leaky gut" is not very leaky, so the peptides take a long time to build up

b)  A gradual increase of the peptide dose lets the body stay in phase one for a relatively long period.  Phase two (a sense of permanent withdrawal) is only entered when the rise has flattened out, and habituation has taken place. 

6.3 Our first, big diet infringement

Early in June 1993, when our son had been nearly two years on the diet, his little sister was careless.  She pushed away her halfeaten plate of oatmeal porridge with milk.  Unluckily, she pushed it in his direction, and since he was hungry, he started eating after a little while.  We don't know how long he was at it, but we guess he got into his system something like half a glass of milk and 4 - 10 spoonfuls of porridge. 

We warned his teachers to be on the lookout for symptoms that day, and they didn't see very much except that his pupils were constricted (smaller than normal) for the first time in two years.  Since his teacher knew that there was some connection between our son's problem and his large pupils, she interpreted the small pupils as a good sign.

It took four days for the problems to build up in earnest.  From day four, we had a strong regression.  Time after time, we were forced to recall how things had been two years previously:  Behaviour that we had mercifully forgotten or suppressed in our memories was back, with a vengeance.  He did not connect with us the way he used to.  We wondered if this COULD have been due in some, mysterious way to our nervousness.  But no.  One small anecdote about what happened. 

At this stage, our son was really "best friends" with his little sister (nearly 2).  They played together much of the time.  He helped her, and she loved him.  In the mornings, he actually walked her to the kindergarten.  The distance was 100 meters, and we could watch them from our window all the way.  When they were nearly there, we went after them and helped him get her into the kindergarten house, and then we took off her jacket and hat and handed her over to the aunties while our son played outside with the brush.  This had been standard routine for three months before the diet infringement.

After the initial four days, there was no play anymore.  His little sister was unhappy about this, but she was simply not able to make contact any more.  We let them out in the morning, but he only pushed her into the ditch (involuntarily) and ran away.  I went out, caught up with them, and led both of them down to the kindergarten.  I was very nervous about what was going to happen, so I left him outside for only 15 seconds while I went indoors with the little girl.  When I came out again, he was gone.  He must have run quickly:  Even though I ran off in the same direction as he had taken (towards the big local road), he got there before I could find him.  And even before I could get there myself, he was spotted by a man who happened to be passing by.  That man kindly stopped his car, caught our son, and took him by the hand back towards where he'd come from.  Normally, not one grownup in 1000 would have reacted to seeing our son outdoors alone, but that morning he behaved so abnormally as to get himself picked up immediately. 

There were many other signs of regression:  Hyperactivity, skin rash, red eyes, and he slept very badly, particularly in the mornings.  Suddenly, the toilet training didn't work:  He soiled his pants a couple of times in the daytime, and his night diapers were dreadfully messy.  There was lots of stimming as well, mostly in the form of meaningless use of his most popular words.

Because of his constant hyperactivity, our safety precautions were no longer sufficient, and he repeatedly got hold of forbidden food in the weeks that followed.  At the end of September, we asked a friend for help:  Johnny Ekrem, whose daughter had by that time been GFCF for more than 10 years.  He suggested removing soy and eggs, which we did, and gradually things got more quiet.  Some time during October or November, we were back where we'd started out in early June. 

6.4 Later diet infringements

Later on, we decided that we would have no more of this if we could possibly avoid it.  We got hold of digestive enzymes and a special medicine which induces vomiting in about 10-15 minutes.  He learned to hate this medicine, but it helped us through a 3-4 involuntary challenges during the next years.  Such challenges invariably caused regressions, of the type described above.  We remember, with particular distaste, his night diapers on these occasions.

We also saw a relatively high number of periodic regressions that we interpreted as "possible diet infringements".  His condition seemed very fragile:  No matter how careful we were, we'd get difficult periods, for some reason they were more frequent and more longlasting in the autumns. 

Today, we think that these were caused by wheat starch, which was gluten free only in the legal sense (<0,3% of gluten).  Through this flour substitute, he was actually getting more than 3 grams = 3000 milligrams of gluten every week. 

When we found out about this, and found other flour substitutes, things got much better.  We were suddenly able to put away the night diapers permanently, and the "heavenly days" became more the rule than the exception.  Now, we could see much more clearly, the effects of any one diet infringement, since they were no longer clouded or supported by other supplies.

The first one was a small salty snack, "Saltstang" in Norwegian.  It weighed about 2 grams, and contained wheat flour and milk.  The protein content is below 10%, so the total protein intake was below 200 milligrams.

The second was a very small quantity of riceandmilk porridge:  An "empty" plate not put properly away in the dishwasher.  Our son scraped this, and managed to swallow some before we saw him and acted.  At this stage, we've stopped giving him the medicine to cause vomiting, because he fights it so desperately, and since we've got the digestive enzymes instead.

The third infringement was unobserved, and could have been anything.

For all three infringements, the first phase took about 24 hours.  Then he became more introvert, less focussed, and resisted strongly to any kind of interference.  Any kind of stress or interference with his plans would cause him to drop to the ground and stay there, uttering loud noises and curling up if we wanted to get him up out of the muck (or out of the way of other people in the shops). 

Such infringements always have a heavy impact on sleep pattern (he gets restless and rises very early), activity level (increased, sometimes this escalates to general hyperactivity), social interaction (no play, less connectedness), pupil size (increased), toilet habits (sometimes, still, he will soil his pants), etc.  They seriously affect HOW he uses his language.  In good periods, it's used for communication.  In bad periods, it's part of a compulsory meaningless (at least for us) behaviour.

The first and second of these incidents lasted for two weeks.  The third, during which he was given the new type of digestive enzyme called "SerenAid", lasted only for one week.   Later on, with more systematic use of “SerenAid”, we’ve had infringements that have given only marginal problems.

6.5 Biochemichal evidence

We've run peptide tests during "good" and "difficult" periods, and there's no mistaking the connection:  During bad periods, the peptide count is much higher than normal. 

6.6 Summary  and hints on interpretation

A gluten/milk challenge may alter behaviour through several stages, and the initial stages may not be the most difficult ones.  So when you try to explain the positive or negative signs, you should NOT take calmness for ONLY positive in an otherwise hyperactive child:  Remember it could be the initial stage of a chain reaction leading to (greatly) increased activity in a couple of days.  Likewise, you must not only look at what happened today, but at what happened last week or even last month. 

Early on during the diet experiment, the child's general pattern of function and behaviour will be more heavily modelled on what he or she has been through, before.  Therefore, the effect of a diet challenge may be more difficult to see early on than later.

When your child has acquired a number of social skills and abilities, etc, it will be easier to see when these disappear, and he starts to lie down in the mud / run away from you / becomes impossibly restless / talks nonsense etc.

Five years ago, when our son was getting 3 grams of gluten per week in his "gluten free" bread, 200 milligrams of additional gluten would not have made much difference.  Only when the system has unhabituated itself from a steady supply, will it show its maximum sensitivity to tiny quantities.