An overview of the different types of milk allergy and intolerance:

Most people these days assume that when you say “milk allergy” you mean “lactose intolerance.” Some people know these are different, but even milk allergy/intolerance sufferers can be pressed to explain which milk ailment they’ve got. Of course, in an ideal world none of us would have to explain because my ideal world would not include any dairy products. At the present time, when you’re trying to work out which of these illnesses (and these are just the ones I’ve found out about, I’m sure there are others – contact me if you know of any so I can add them) is the cause of your inability to eat dairy, it’s made even more difficult when the doctors themselves sometimes don’t actually understand what they’re saying or what all the different dairy allergies and intolerances look like. For simplicity, I call all these different illnesses “milk ailments” collectively, so you know that I’m referring to all of them, not just cow milk allergy. I have at least two separate milk ailments, but I’m unsure what the second one is. Without paying huge amounts of money for allergy testing, I will never find out.  UPDATE: September 2015: I now know I have #7 and #1.

Here’s an overview of the types of milk allergy:

1. Lactose Intolerance
2. Galactosemia
3. Alpha-S1 Casein Allergy (cow’s milk)
3a. Antibody Mediated Allergy
3b. Non-antibody mediated allergy
4. Milk Soy Protein Intolerance
5. Fermentable Carbohydrates Intolerance
6. Disaccharides intolerance
7. A1 casein intolerance

Lactose Intolerance:
This is the classic milk ailment that most people have. Basically, we didn’t evolve to consume dairy products after weaning, so (according to certain statistics) 60% of the European descended adult population, 90% of the African descended population and 95% of the Asian descended population can develop lactose intolerance under the right conditions. It’s caused by your body reducing lactase enzyme production after a certain age. Lactase is the enzyme that digests lactose from milk. Lactose intolerance comes in two forms:

Lactase deficiency, a.k.a. hypolactasia:
Many people with this ailment have a threshhold of how much milk they can consume, after which the effects are uncomfortable.

Congenital lactase deficiency:
However, there is a variation of this, where the sufferer lacks the gene for lactase production and so has no lactase enzymes whatsoever. This person cannot even eat tiny amounts of lactose without feeling the effects. As a baby, they cannot even have breast milk.

As an adult, these two forms of lactose intolerance produce the same symptoms and cause the same problems in life, especially if you live in a country that eats a lot of dairy. Because it’s the best known of all the milk ailments, it’s the one people assume you have when you tell them you can’t have dairy. Pro-tip – if the lactofree works for you, you’re lactose intolerant. If it makes you horribly ill instead, you have a different milk ailment.

Symptoms: Bloating, diarrhea, gassiness, feeling very uncomfortable, all the symptoms of lactose intolerance are LOWER INTESTINE symptoms. “Anyone (except for young children) who gets vomiting, burping, heartburn, or other stomach ills, should look for a different cause.” http://www.stevecarper.com/li/LI_v_milk_allergy.htm
Unfortunately, to get your doctor to look for a different cause, you might have a real fight on your hands, particularly in the UK where allergies are not taken seriously (they only kill you, after all).

What do you need to do if you have lactose intolerance:
Avoid dairy. If you can tolerate a small amount of milk, you can experiment and find out your limits. Be sure you don’t have any kind of milk allergy before ingesting any milk! There are also lactase enzyme capsules available on the internet, I have tried these (that’s how I found out I was also lactose intolerant) and found that they definitely do help you to break down the milk. Instead of getting all the lactose intolerance symptoms that I usually get within 30 minutes of eating dairy, I only got the secondary symptoms that I get from my unidentified milk ailment (probably either galactosemia or non-antibody mediated allergy), a few hours later. You can also get special milk that’s cow’s milk but has been predigested with lactase enzymes. I haven’t tried the milk, but I did try the cheese. In the UK it’s marketed as the “Arla Lactofree” brand. I got very ill, but again, it’s probably great if lactose intolerance is your only milk ailment.

Galactosemia:
In the US, this potentially deadly genetic disease is routinely tested in infants. In the UK, this doesn’t happen. I asked six doctors if they could tell me the symptoms of galactosemia, none of them knew, and they all mistakenly said it was the scientific name for lactose intolerance. This is incorrect. In individuals with Galactosemia, the lactose itself is tolerated just fine – the enzyme lactase breaks down the lactose molecules and produces two smaller molecules – glucose and galactose. This is how we get glucose for respiration, and this happens in healthy individuals AND individuals with galactosemia, but NOT in individuals with lactose intolerance. In galactosemia, it’s the galactose that’s not tolerated – it cannot be broken down further, so it builds up, causing toxic levels of galactose-1 phosphate in various tissues. This can cause liver damage, renal failure, cataracts, brain damage and ovarian failure. It is most prevalent in the White European population at a rate of 1 per 60,000, and the traveller population is worst affected at 1 per 6000 (although since it’s a very small minority group this statistic might be flawed).

Symptoms:

Children: Usually, you will find out fairly soon if your infant has galactosemia. It causes jaundice, failure to thrive, lethargy, vomiting and diarrhea.

Adults: If, like me, you were brought up on soya milk, you may not ever find out whether this is the cause of your milk ailment. It is certainly the most serious non-allergic response to milk, and not enough people in the medical profession know the signs.

What do you need to do if you have galactosemia: Avoid milk. In fact, avoid anything containing lactose. You may be okay with “lactofree” products but personally I wouldn’t risk it if you value your major organs. Galactose is also found in sugar beets and gums (gellan gum, xanthan gum, for example) and mucilages, so this is one problem where you may require the services of a qualified dietitian with experience in galactosemia. If you’re vegan, make sure they take this into account when meal planning, some health professionals can be insensitive about such things (whilst others can be fantastic).

Alpha-S1 Casein Allergy (Cow’s Milk Allergy)
With this allergy, often it’s really obvious from birth that you have it. But not always. If this is you, you cannot have any milk containing product, may contain milk, made on a line handling milk, and if it were me, I would avoid anything made in a factory handling milk. The actual part of the milk that CMA sufferers are allergic to is a protein called alpha-S1 casein. It’s in a lot of things. There are other milk proteins and other parts of milk that you can be allergic to (you can actually be allergic to anything in the world, they don’t tell you that when they’re trying to fob you off with lactose intolerance). While it’s become common in the past few years to call it “Cow’s Milk Allergy,” most sufferers will need to avoid any and all milks, even sheep and goat. This is the one that people also refer to as “milk allergy” just to confuse you – there are other types of milk allergy but this is the one people always assume you mean.

There are actually two types of milk allergy that I could find any information about: antibody mediated allergy, and non-antibody mediated allergy, and they have different symptoms. When allergy helplines and doctors tell you that you don’t have a milk allergy if you don’t go into anaphylaxis, they actually are only talking about an unusual specific reaction to the antibody mediated allergy.

Antibody Mediated Allergy:
The symptoms of this always arise within an hour of consuming milk. Basically, your body produces antibodies and believes that any Alpha-S1 Casein proteins are actually invaders, so they fight them off and these antibodies are what make you ill.

Symptoms: Skin rash, hives, vomiting and gastric distress, stomach pain, respiratory problems, wheezing and runny nose are all symptoms of this, as well as (very rarely, but can happen) anaphylaxis.

Anaphylaxis is: difficulty swallowing, shortness of breath, swelling of the face and neck, call 911 or 999 immediately when this happens. It’s life threatening. If the person involved has an epi-pen, now is the time to use it. It’s really easy these days – just jab the pen against the outer thigh of the person having anaphylaxis. This isn’t a “cure” they still need to go to hospital. An epi-pen just has adrenaline in, and doesn’t actually stop the reaction, it just gives the body adrenaline to help survive. The real treatment is Diphenhydramine, one of the many types of Benadryl. This is what they’ll give to the sufferer once they get to hospital. If you have some Benadryl syrup with the word “diphenhydramine” on the box, this could help if they can still swallow. Anaphylaxis sometimes happens so quickly that you can’t do anything other than stab that epi-pen, call an ambulance and hope like hell that your loved one will be okay. Other times, the sufferer has time to articulate the problem. What is common to both situations is to ALWAYS take anaphylaxis seriously. It’s far better to be safe and have irritated ambulance staff on your porch than to have a dead loved one. See http://www.anaphylaxis.org.uk for more information about anaphylactic shock.

What do you need to do if you have antibody mediated cow’s milk allergy: Totally avoid any and all dairy and milk based products, check ingredients regularly and carefully (they often change), look for words such as:
milk, lactose, milk proteins, whey, whey powder, cheese, butterfat, buttermilk and casein, and if a word is in bold on the back of a packet, look it up on your smartphone before putting the item into your trolley. Never EVER assume a product or food is milk free unless it’s a pure unadulterated fruit or vegetable, or you’ve checked the ingredients yourself. Sometimes, other people will tell you that something is milk free when it isn’t. Sometimes, they just don’t understand what they’re reading on the back of a food packet (it’s a learning curve) and sometimes they do understand, but don’t believe they’ll be doing you any harm (particularly people who don’t understand that your ailment is different from lactose intolerance.
Badger your doctor for an epi pen. You can’t always control your food, sometimes a restaurant accidentally cross contaminates or doesn’t realise that whey (for example) is milk. If this is the case, you want to be as safe as you can. There was a manufacturing/supply issue with epi-pens across 2014, there are alternative brands as well (which a lot of doctors and pharmacists don’t know about), read about them here: http://www.anaphylaxis.org.uk/living-with-anaphylaxis/medication. Hold onto your prescription if you can’t get it fulfilled, and check back sporadically – they’re usually good for at least a month, often longer, before they expire. Your other option is to find an online source for an epi-pen and get one through them. Some places can issue prescriptions and if they are licensed by a Pharmaceutical Governing Body then they are NOT selling inferior medicines (don’t believe the anti-online-pharmacy hype). Check they can legally ship it to your country and that they’re not going to put it in an unpressurised cargo hold if it’s being transported by plane – it can shatter the vials that connect to needles, rendering the whole thing useless. My friend once went to Peru, left his insulin in the checked-in baggage, and when he got to the (rather remote) archaeological dig he was on, he needed insulin, so he opened one up to use, to find that every single vial was shattered. He was trapped in the middle of nowhere in Peru with no insulin. He had to be airlifted to hospital and nearly died. Make sure this doesn’t happen to your epi-pen.

Non-antibody mediated allergy:
Recently, a body of scientists have discovered that there’s a second type of milk allergy, which doesn’t involve IgE – the antibody that causes the problems in antibody-mediated cow’s milk allergy. The mechanism is poorly understood and research doctors can’t decide whether this is an allergy or an intolerance, just to further confuse matters. Some of them think this is a separate type of allergy that still has an allergic reaction, just not using the same specific antibody causing the problem in the previous allergy. Others believe it’s another form of lactose intolerance, although the problems associated with lactose intolerance are all lower intestinal problems, and the problems associated with non-antibody mediated allergy are very different. Because the problems take place in a part of the digestive tract that doesn’t actually digest milk sugars, the argument that this is lactose intolerance is invalid, and the idea of a generalized milk intolerance just oversimplifies the digestive process. Mostly, because there’s no money to be made from these types of allergies, I think reseach councils don’t care enough to fund research into milk allergy. Milk is a complex substance, with many components of very different types (remember it’s supposed to be a complete source of nutrition for calves) so the idea that we are just “intolerant to milk” or “allergic to milk” rather than being allergic to one or more of the milk fats, milk proteins or milk sugar is a silly one. Coherent and conclusive information about the medical classification of non-antibody mediated allergy was non-existent, so you will have to make your own enquiries. Some of the symptoms are similar to the antibody-mediated allergy – stomach pain, vomiting, gastric distress, skin rash. The reaction can be delayed by up to 72 hours.

What to do if you have non-antibody mediated allergy:
Avoid milk in its entirety, including lactofree products and anything containing whey, casein, butterfat or lactose, because they really don’t know which part of it makes you ill and it’s not looking likely that they’ll find out any time soon. Coconut milk (despite some confusion on the parts of certain companies) is just fine unless it contains a specific additive. Don’t worry about getting an epi-pen; it won’t be of any use to you.

Milk Soy Protein Intolerance:
Milk soy protein intolerance is another one with very little information on the topic. It’s basically a reaction to the proteins found in milk and soy. These proteins damage the inside lining of the digestive tract. It affects infants, and in these cases, solid foods are introduced at a later stage. Foods also need to be introduced in a different order. The best resource I have found on MSPI is here: http://www.choa.org/Child-Health-Glossary/~/media/CHOA/Documents/Child-Health-A-Z/Special-Diets/Milk_Soy_Protein_Intolerance.pdf
There is evidence that MSPI can continue after weaning and even through to adulthood, although this is rare. It doesn’t show up on a blood test, which means it is diagnosed purely by symptoms. Children with MSPI cannot have goat’s or sheep milk products, although people who have confused this with lactose intolerance will suggest it.

What are the symptoms:
Bloody stools, vomiting, diarrhea, irritability and weight loss.

What to do if you have milk soy protein intolerance:
Avoid anything with either milk or soy (soya) in. This includes all of the following:
Milk, butter, cheese, cream, buttermilk, milk solids, milk powder, milk protein, malted milk, condensed milk, evaporated milk, milk derivative, goat’s milk, sheep’s milk, skimmed/powdered milk, dairy solids, non-fat dairy solids, yoghurt, whey, casein, caseinate, sour milk/cream, curds, custard (unless dairy free) butter oil, ghee, butter fat, soy flour, soy lecithin, soy protein, soy protein isolate, textured vegetable protein, soy beans and soy caseinate

Fermentable Carbohydrates Intolerance:

All carbohydrates are sugars – carbohydrates is just the scientific word for sugar. We often associate carbs with pasta, rice and grains, but in fact, any sugar is a carbohydrate.
Fermentable carbohydrates are a specific type of carbohydrate which ferment during digestion; they are supposedly easier to break down because they are short chain sugars. Some people are intolerant to them; lactose and galactose are both short chain sugars, and they come from milk.

What are the symptoms of fermentable carbohydrates intolerance:
Bloating, cramping, gassiness, burping, diarrhea or constipation.

What to do if you have fermentable carbohydrates intolerance:
Managing a fermentable carbohydrates intolerance can be complicated, it requires a lot of restrictions from a wide range of foods. This booklet explains what you need to do if you have fermentable carbohydrates intolerance:

Disaccharides Intolerance:
Disaccharides are a specific type of carbohydrate (sugar). When your body doesn’t produce enough isomaltase and sucrase enzymes, it can’t absorb disaccharides. Watery diarrhea and abdominal discomfort are the main symptoms, and it isn’t a life threatening ailment. Lactose is a disaccharide, because it’s made of glucose and galactose. Lactose is found in milk which is why I have included this intolerance here, because it’s a very rare but often overlooked intolerance.

What to do if you have disaccharides intolerance:
Find a qualified dietitian, or request a referral to one, depending on what your health insurance or local health administration covers you for, because there are so many disaccharides in existence that it’s a very complicated condition to manage.
More information can be found here: http://www.rightdiagnosis.com/c/congenital_sucrose_isomaltose_malabsorption/intro.htm

A1 Casein Intolerance:

This gives you all the gastric distress, possible skin rash, sickness, diarrhea, and other lovelies, but it’s not an allergy, it’s an intolerance.  The theory goes that back in olden times (technical term), cows used to produce milk with the A2 casein type.  Cows that aren’t from western/central Europe or America still seem to produce milk with A2 casein type.  However, cows from western/central Europe, The Americas, Australia and New Zealand all produce A1 casein, which is a genetic mutation (but was discovered first so is called A1 where the other one is called A2).  Some people come from ancestry who never evolved to tolerate A2 casein, they cannot digest that protein.

What to do if you have A1 casein intolerance:
First, eliminate any chance of it being an allergy by seeing your doctor!  Then, test this theory by buying yourself some A2 milk (available in most supermarkets in the milk aisle) and having some of it e.g. in a hot chocolate.  If you get lower intestinal symptoms from A2 milk, but none of your other “usual” symptoms, you may also have lactose intolerance.  If you get no symptoms from A2 milk, where you usually get symptoms from “normal” milk, you probably have A1 casein intolerance.  Take your findings to your doctor so he can put this on your medical notes.  If this is the case, you can buy broad-spectrum enzymes that may help you digest normal milk products, otherwise, you should be ok with authentic feta, halloumi, and paneer, because these are made in countries with A2 cows.

Conclusion:
If you know milk is making you ill, there are many different problems it can cause. Doctors often use the rule of “parsimony” to diagnose people – the idea that the most common/simple explanation is most likely to be correct. Obviously, this means most people get diagnosed with lactose intolerance, and since most of these conditions require you to avoid milk, the symptoms abate when you do. While avoidance of milk is paramount, you must keep pressing your doctor for a conclusive diagnosis and testing, because the more people they wrongly diagnose with lactose intolerance, the more common it looks on statistics. I would estimate 20% of people diagnosed with lactose intolerance have a different or additional form of milk ailment, and that because doctors aren’t investigating, the rate of occurrence of these other milk ailments looks artificially lower than it actually is. Print this article to show to your doctor if you need to, but make sure your illness is correctly diagnosed.

Limitations of this article:
This article draws on what is currently known about illnesses which are made worse by consumption of milk. I can only write about what I can learn about from research, and I am sure there are other forms of milk ailments which could be included in this article, but which haven’t been named in places where I could find them. I’ve found that trying to research different milk ailments is very difficult – search terms only bring up the exact thing you searched for, so related illnesses aren’t discussed in the majority of articles.