11 Managing the diet 

11.1 Is it difficult ?

Starting the diet is difficult.  Making up your mind to do it is difficult.  Learning what products contain hidden gluten and caseine is difficult.  When you're through all that, the actual maintaining the diet is relatively easy.  Many people won't agree with us on that last point, but we maintain it:  It is, at any rate, infinitely easier than having a badfunctioning autistic member of the household, like we had before.

The hardest part of this may not be the actual managing of the diet, but handling your own hopes and expectations, in a skeptical environment.  If you love your child, you will constantly be "seeing" little improvements, and when you add them up, you will be very disappointed, because it's in the nature of love to ignore the negative = the little setbacks that may or may not cancel out the improvements.  The sum of single improvements that you have observed, is likely to outreach the actual accumulated improvement by a factor of more than 50 to 1.

I've met parents who have had virtual hell, over a number of years, trying to eradicate every remnant of hope they ever had for their children, only to discover again and again that they have NOT got over it.  Every time they are confronted with hope, they get desperate because they have no absolutely no frame of reference telling them what is realistic and what is not.  So they hope (at least subconsciously) for too much, and are far too subjective in their analysis of what they have or have not managed to do for their children.

Remember that the GFCF diet does NOT "instantly" replace the results of (prolonged) abnormal development with the normal development that should have taken place, had the problem not been there.  Every individual has his/her own unique starting point, and the way upward from this starting point is windy and narrow.  Sometime it's hard uphill work, sometimes you slide back, and lots of it consists of little hills up and down. 

11.2 How strict do I have to be ?

The body will adjust, gradually, to a reduced supply of offending protein.  Take away 95% of the supply from a drug addict, and it will make a big difference to begin with.  However, the small supply that's left is still a very serious problem, as the body readjusts (after the initial withdrawal symptoms) to the new level. 

We got the impression, over the years, that our son was hooked on the opioid peptides in much the same manner as drug addicts are, and that he was gradually able to "use" a smaller and smaller supply.  Remember that EVERYONE can produce "endorphins", and that a child in opioid peptide withdrawal symptoms will (probably) do everything it can to replace these "exorphins" with "endorphins".  It can even procuce HEMORPHIN from blood cells (there's a constant recycling process going on).  So it's no wonder it can take years to break the vicious circles.

As a result, we have become strongly concerned about grams and milligrams.  However, we se no reason to bother about nanograms, like for instance possible traces of gluten left in grain alcohol after distillation, and which could therefore affect certain flavourings.  Maybe we're wrong there.  Maybe they matter.  Other people claim that they do.  Make your own choice !  However, most kitchens have lots of possible pitfalls in the gram or milligram size order.  Try to handle these before using lots of energy on the nanogram problems. 

11.3 Common pitfalls

The most common sources of gluten and caseine contamination could be pots, pans, breadboards, crumbs, insufficient washing up, and flour contaminated dust.  Dust gets inhaled, sticks to the mucosa in the respiratory tract, and then gets swallowed.

We never allow our son to touch forbidden food without washing his hands afterwards.  Skin is porous and will absorb small quantities of milk etc.

Wooden kitchen utensils (spoons, breadboards etc) should be kept strictly separated and should be clearly marked.  (We drill holes and paint a red circle round the hole in the things that need to be kept permanently GFCF). 

11.4 What products and foods must be avoided ?

So many people have written about this practical part of the problem, that we are not going to overburden these pages with repetition.  A good starter is to read the relevant section at www.gfcfdiet.com 

In Norway, you can also try to contact "Proteinintoleranseforeningen" :  They have been putting in a lot of effort in this area, for many years. 

11.5 If you don't get results after a long time on the diet

If at all possible, you should try to get the peptide levels tested.  They will tell you whether or not there are still peptides left.

If you can't get the test done, and nevertheless want to do anything possible, we recommend the following actions:

a)  Increased doses of digestive enzymes with every meal.  The standard SerenAid dosage is 2 capsules with (just ahead of) every meal.  I'd consider increasing this to 3, giving four times three capsules a day. 

b)  Increased vigilance to make double sure that there is no contaminated food getting through

c)  You can also try 14 days of "stone age diet", to make sure that nothing even remotely capable of causing problems is entering the system.   In particular, we would try eliminating soy protein and eggs.  If this restricted diet seems to help, don't stay on it indefinitely.  You should reintroduce one type of modern foodstuff (ingredient) at a time,  with 3-5 day intervals, giving large quantities of each product in turn, and watch out for reactions.  Remember that the most obvious part of the reaction can be delayed by up to 3-4 days.