The theory
I have read many scientific papers on RA and celiac disease and diet.
Most of these science papers are a JOKE! They are hardly ever randomised or blind. Often the diet is not well specified (or even left up to the patient!). The trials are often 'sponsored' by drug or supplement companies and the science is weak to say the least. In particular, they never seem to consider that symptoms could be affected by something that a patient is NOT consuming, rather than some 'magic' food that the patient is eating. If there was a food that can improve RA, don't you think that it would have been noticed by now!
(though I am not an expert!) I have found out from reading various papers that:
We now know that if you have celiac disease, eating 'gluten' triggers an immune response in your small intestine which involves T-cells and auto-antibodies. Over time, this reaction damages your small intestine's lining and prevents it from absorbing some nutrients (malabsorption).
- RA is a genetic autoimmune disease which may also be triggered by external factors
- RA, celiac disease and diabetes type I are all closely genetically related (they involve similar DNA mutation regions)
- There is evidence that 'diet' can have a very beneficial effect on RA symptoms for some people
- Your gut is responsible for 80% (ish) of your whole immune system
- Dermatitis herpetiformis (blistering skin rash) is a symptom of gluten intolerance in celiacs
- 10% of RA patients also develop celiac disease
- Celiacs are treated by avoiding gluten in their diet
- Some celiacs are very sensitive to traces of gluten, but others are able to tolerate larger quantities.
- Celiac disease, gluten sensitivity, gluten/wheat allergy, dermatitis herpetiformis and gluten intolerance cover a broad spectrum and are often difficult to accurately diagnose.
- Some food/flours have added antibiotics (e.g. E282) or other chemicals which may exacerbate gut symptoms by killing some of the gut microbiome.
And here are my own conclusions:
- If you can have bad days and good days, then your immune system is probably reacting to something it has come into contact with.
- There may be a delayed reaction. Something you consume needs to pass through your gut and be absorbed into your system and then excreted. This can take 1-2 days.
- Your immune system can be stimulated by exposure to an antigen (a substance which your immune system treats as an 'enemy'). This can cause inflammation. In the case of RA, the auto-antibodies produced can attack the synovial tissues in your joints.
- The 'microbiome' in your gut can digest substances (mainly proteins) that your own stomach and gut tissues cannot. They may produce antigens or destroy antigens. Their role is not well understood.
- The immune system in the gut of a celiac reacts to certain foodstuffs so aggressively that the small villi in the lining of the intestines actually slough off (in some cases). This causes symptoms such as those listed below (see 'Celiac Symptoms'). Other autoimmune diseases may also be triggered by some substances in food.
- Scientists do not fully understand the exact mechanisms of celiac disease or RA or Type I diabetes.
- 10% of RA patients also develop celiac disease (and it is my suspicion that many more have a mild form of celiac disease or maybe they were mis-diagnosed to start with?).
- Your symptoms tend to be worse first thing in the morning because any medication will be at it's lowest concentration.
- In the morning your stomach and intestines will be (mostly) empty. Therefore, anything you eat (e.g. cereal) or drink in the morning will come into direct contact with your stomach and gut lining (and immune system) with no other foods, etc. to buffer or dilute it. So it is particularly important to not eat any trigger foods for breakfast. Some RA patients often tend to skip breakfast because they feel better - this is why! Eating a big lunch with lots of different food types will tend to dilute out the 'bad' foodstuff (if there was any in your meal).
- In my case, I don't know if my body reacts to 'gluten' or some other substance in grains or some substance added to grains/flour by manufacturers or a breakdown product of grains that is produced by my gut bacteria. For instance, E282 (calcium propionate) is an anti-microbial agent often added to grains/flour products to prevent mould. I just know that my symptoms are much worse if I ingest most (but not all) types of products which contain flour/grains/seeds including some GF products. Having said that, occasionally eating macaroni and pasta seems to do me no harm and white rice is fine too. On the other hand, some 'gluten-free' labelled bread causes severe symptoms the next day - but a few other brands of GF bread seem OK. Some GF products seem to be subtle in their affects and build up over time (low energy, depression, slight stiffness). I have repeated 'tests' of these 'bad' foods many times over the last 5 years (omitting them and then adding them back to my diet two or three times over several months) and the results are repeatable and consistent.
In a nutshell
My theory is that your immune system may be triggered by something you ingest (not necessarily gluten\grains - it may depend on the individual - it could even be some substance that is added by the food manufacturers).
There is a delayed reaction, so something you ate yesterday may trigger a bad reaction the next day.
There can also be an insidious build-up over days or weeks; ingesting just a small amount of the 'bad' foodstuff or substance each day can cause a slow build up and symptoms can worsen over a period of many weeks.
Your gut may become very sensitive to a 'bad' substance, such that even a small quantity of it, ingested regularly every day (especially on an empty stomach), may have serious adverse effects over time.
Cutting out the 'bad' substance often results in a notable improvement in symptoms within a few days, though it may take up to 6 months to get back to a 'normal' state (if possible).
Scientific RA diet plan studies/trials
I believe that many diet RA trials were not adequately controlled. It is very difficult to completely exclude certain foods or chemicals from the modern diet. To run a proper food/diet trial, you need to ensure that everything that the subjects ingest is not 'toxic'. This would mean only using fresh organic vegetables and organic meat and fish which have not been given grains or any other antigens/chemicals to eat. Merely telling the subject to not eat 'gluten' is simply not good enough! Indeed, the 'bad' substance may be something that is added to food (e.g. to prevent mould/fungus/insect infestation, etc.) and could be in a GF-labelled food product.
Some of the 'science' papers tested a 'Mediterranean diet' but they did not define what exactly that was. If you agree with the premise that a 'bad' substance is causing an autoimmune reaction, then it is extremely important to exclude that bad substance from your diet.
It is not a question of eating 'good' foods which will make you feel better - it is a matter of NOT EATING BAD FOOD(S)/SUBSTANCE(S).
e.g. Eating lots of organic carrots will not cure you of arsenic poisoning! Not eating arsenic for a day will not prevent your body being poisoned if you then eat arsenic the next day! You need to stop eating the poison!
Some papers have trialled RA patients by putting half of the subjects on a 'gluten-free' diet. However, they do not specify what that diet actually was! For instance, nearly all seeds and grains contain 'gluten' proteins. Rice and oats contain gluten - however not many people are sensitive to the gluten protein in rice (orzenin) or to oat gluten (avenin - many sources on the internet will tell you that oats do not contain gluten - this is totally untrue!). On the other hand, RA patients may be very sensitive to all types of gluten. Indeed, some celiacs are sensitive to grains other than just wheat, oats, barley and rye.
Many products are made with 'flour' - but often flour has lots of extra ingredients added to reduce moisture, prevent microbial activity, prevent insect infestation, etc. So removing flour from the diet also tends to remove these other substances too.
So, to test for gluten-sensitivity, these subjects needed to avoid all seeds and grains as well as all additives (for instance, a multi-seeded gluten-free loaf of bread may not contain wheat, oats, barley or rye, but the seeds still contain other prolamin 'gluten' proteins which they may be sensitive to). They also need to avoid yeast (because it is usually obtained from brewers yeast which is made from grains), and avoid all other substances such as beer, soy sauce, marmite, Horlicks, all processed food, maltodextrin, etc. too.
Here are some articles (but there have also been other studies which have shown little or no beneficial effect!)
As I said, most trials were not very rigorous in the control of the subject's diet and so the results have been mixed. Also, any trials need to be repeated and confirmed - all scientific experiments must be carefully specified, controlled and repeated before they become credible - something that is very rare in these types of trials! Not all 'wheat flour' is the same, not all 'gluten' is the same, the same product from the same supplier can contain added/contaminating chemicals which may vary in concentration over time/age/origin.
There has been one trial to study the affect of the AIP diet on IBS here, although this was not a random trial or a blind trial and it also introduced other factors such as vitamin supplements and social support groups, etc. - hardly scientific! I don't know whether to laugh or cry about this type of 'science'!
The AIP Diet
To test if you are 'sensitive' or intolerant to 'something' that you ingest, there is an easy way to find out. Simply adopt a diet which cuts out any food (or substance) which may be triggering your immune system. I started to devise my own 'safe' diet and write an eBook but I then discovered that there is already such an exclusion diet (actually it is more of a regime).
It is called the Auto Immune Protocol or AIP diet. It consists of two steps or phases:
Step 1. Only eat pure, fresh, unprocessed foods that are highly unlikely to be a problem to anyone - then see if you feel better.
Step 2. Slowly add back in more food types into your diet each week, slowly and one at a time, until you find one (or more) that makes your symptoms worse.
Some people find that they improve so wonderfully on Step 1, that they are too scared to fully complete Step 2 because they don't want to be in pain again.
Some RA sufferers notice an improvement in their pain levels after just one or two weeks of being on Phase 1 of the total exclusion diet. If that happens to you then you know you are on the right track. If you don't see any change after four weeks, then simply go back to your normal diet and you have lost nothing! I would fully expect less than 10% of AI or RA sufferers to see any improvement - but for those 10% it may have a significant effect on the rest of their life (I hope)!
See my AIP Diet page for more details including scientific proof that AI disease symptoms are caused by auto-antibodies which are triggered by antigens - scientists have cured people by removing their T-cells!
Note: Many people confuse the 'Paleo or Caveman diet' with the AIP diet. Some even call it the AIP Paleo diet! But the true AIP diet is nothing specifically to do with gluten or ancient grains, etc. It has been designed to try to scientifically identify any foods (or food additive) which your body is sensitive to, so that you can then avoid them - nothing else!
Now it may be that 'ancient grains' are OK for you and that you are only sensitive to modern wheat, however modern wheat is probably 'processed' a lot more - mass-produced grain may contain added chemicals, pesticides, insecticides, etc. whereas artisan flour made from 'ancient grains' may be organic with no added chemicals. This may be why the bread some celiacs eat when on holiday abroad in some countries does not seem to affect them as much as the bread consumed at home.
Symptoms of Celiac Disease
Now you may think that it was easy to discover how to treat celiac disease by not eating gluten and that it must have been really obvious right? WRONG!
The symptoms of celiac disease has been known and the disease had baffled people for thousands of years (it was documented by the Romans). Many children died from it (eating made them feel so ill that they refused to eat).
In 1924, a Dr Haas in the USA became quite famous for his infant celiac 'cure' which consisted of feeding a celiac child exclusively on bananas and milk protein (before 1924, celiac children usually died from malnutrition because they were always given grains in their diet, such as malted milk drinks -it is ironic that the parents were unintentionally killing their own children!). He accidentally discovered this because a young girl patient of his would only eat bananas and milk and seemed to thrive on it.
It wasn't until 1944 when the Dutch population had no wheat supply during WW2, that a certain Dr Dicke noticed that no child in his hospital in Holland was dying from celiac disease and he then put two and two together (followed by 5 years of further rigorous investigation and trials). That shows you just how non-obvious it was and also how pervasive wheat/grains are in the human diet, especially when eating modern processed foods. But what if your immune system has become sensitive to a different foodstuff such as dairy, eggs, citrus, etc? What if several things (e.g. gluten, dairy and some food additives) caused inflammation? How would we ever know unless we follow a strict dietary test regime comprising pure, organic foods?
- Diarrhea
- Fatigue
- Weight loss
- Bloating and gas
- Abdominal pain
- Nausea and vomiting
- Constipation
- Loss of appetite
However, more than half the adults with celiac disease also have other signs and symptoms which may be related to the gut and the immune system, including:
- Anemia, usually from iron deficiency
- Loss of bone density (osteoporosis) or softening of bone (osteomalacia)
- Itchy, blistery skin rash (dermatitis herpetiformis) - only celiacs get this!
- Mouth ulcers
- Headaches and fatigue
- Depression
- Nervous system injury, including numbness and tingling in the feet and hands, possible problems with balance, and cognitive impairment
- Joint pain
- Reduced functioning of the spleen (hyposplenism)
- Chronic diarrhea
- Swollen belly
- Constipation
- Gas
- Pale, foul-smelling stools
- Neurological symptoms, including attention-deficit/hyperactivity disorder (ADHD), learning disabilities, headaches, lack of muscle coordination and seizures
- Dermatitis herpetiformis - Gluten intolerance can cause this itchy, blistering skin disease. The rash usually occurs on the elbows, knees, torso, scalp and buttocks. This condition is often associated with changes to the lining of the small intestine identical to those of celiac disease. Doctors treat dermatitis herpetiformis with a gluten-free diet or medication, or both, to control the rash. If you have this - you are 100% certain to be a celiac even if a non-symptomatic celiac!
For some cases, an accurate medical diagnosis of celiac disease or 'gluten sensitivity' is not easy or not clear-cut even today. Some RA patients are later diagnosed as celiacs - perhaps they always were?
If you find you may be sensitive to gluten, it is important to realise that all grains contain gluten. Watch this YT video for the truth about gluten. Wheat, oats, barley and rye contain the most gluten by weight - but other grains also contain gluten - just not as much.
Now please go to 'The AIP Diet' page...
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