Is there anything at all that can be done for food intolerances?

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Hubris

Senior Member (Voting Rights)
As my illness gets worse with time, i become intolerant to more and more foods and it has gotten to the point where aside from non processed meat, fish, some vegetables and gluten free pasta there is very little i can eat. I'm intolerant to at least 90-95% of the foods that exist and that number has been steadily increasing over the past years. When I eat something I'm intolerant to, i get diarrhea and worsening of ME symptoms (usually both). i also get itching everywhere during sleep. I am also very underweight.

I don't know what to do. There are many foods i crave but i can't eat them. Am i just doomed to develop nutrient deficiencies? Food is like a minefield and soon there won't be anywhere i can put my foot down without blowing up.

I've tried many anti inflammatory drugs for the gut, they don't do anything. Same for probiotics, etc. I've seen many gastroenterologist and they are all completely useless. If you don't have something very obviously wrong with you (like chron's or ulcerative colitis) they just diagnose IBS, which is medical language for "your problem, not mine, try being less stressed or something i really don't care". I would rant about how much they suck at their job but we already know that.

So, is there anything that can be done at all? I have seen something like 50 doctors and hospitalized many times where they ran every test that they thought useful. So if it was something obvious it would have been figured out already. Well i guess I just answered myself...
 
That sounds very concerning for you Hubris. I'm sorry to hear you're having such a difficult time with food intolerances.

I wonder whether gastroenterologists see their role as diagnosing diseases of the gut, so if they don't find one, they just write people off as IBS and hand them over to psychologists and dietitians.

Have you been able to consult a dietitian? I think their role includes helping people find dietary approaches to digestive problems, including supplements, digestive aids, and food substitutes that might be able to help you.
 
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Hubris said:
As my illness gets worse with time, i become intolerant to more and more foods and it has gotten to the point where aside from non processed meat, fish, some vegetables and gluten free pasta there is very little i can eat. I'm intolerant to at least 90-95% of the foods that exist and that number has been steadily increasing over the past years. When I eat something I'm intolerant to, i get diarrhea and worsening of ME symptoms (usually both). i also get itching everywhere during sleep. I am also very underweight.

I don't know what to do. There are many foods i crave but i can't eat them. Am i just doomed to develop nutrient deficiencies? Food is like a minefield and soon there won't be anywhere i can put my foot down without blowing up.

I've tried many anti inflammatory drugs for the gut, they don't do anything. Same for probiotics, etc. I've seen many gastroenterologist and they are all completely useless. If you don't have something very obviously wrong with you (like chron's or ulcerative colitis) they just diagnose IBS, which is medical language for "your problem, not mine, try being less stressed or something i really don't care". I would rant about how much they suck at their job but we already know that.

So, is there anything that can be done at all? I have seen something like 50 doctors and hospitalized many times where they ran every test that they thought useful. So if it was something obvious it would have been figured out already. Well i guess I just answered myself...
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Let me just say that I suffer as you.
Slowly, inexorably I too, am running out of foods that I can tolerate, although I recognise a wrong un by a pain behind my right eye and a brain that gets lost in fog. I have been dismissed by doctors and seen nothing beyond the proclaimed efficacy of pro biotics that I can't actually tolerate. I try to cherish each food that is available to me all the while wondering when it will not.
Circle the wagons and vigilance .
 
Remain in Light said:
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Let me just say that I suffer as you.
Slowly, inexorably I too, am running out of foods that I can tolerate, although I recognise a wrong un by a pain behind my right eye and a brain that gets lost in fog. I have been dismissed by doctors and seen nothing beyond the proclaimed efficacy of pro biotics that I can't actually tolerate. I try to cherish each food that is available to me all the while wondering when it will not.
Circle the wagons and vigilance .
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I had a similar problem for the first 10 years of my ME diagnosis (I have been ill for 23 years). The types of food I could tolerate steadily reduced and I lost lots of weight, despite already being very slim. After the first 10 years I was prescribed Tramadol for pain relief (maximum 100 mg a day) This had the pleasant side effect of fixing my gut, so that most of the time I can now eat anything. I have not had to increase my dose of Tramadol over the last 10 years. It is supposed to be addictive, but my GP takes the view that quality of life is more important than worrying about dependence on a drug. I don't know if you would be able to try a drug like Tramadol but it really did work for me.
 
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N=1, in case it's helpful.

over the course of a couple of years I went from a whole food veggie to being only able to manage some refined cereals and a very limited range of fruit and vegetables. I did have a bit of knowledge re:horticulture and botany and was able to define a basic FODMAP which at least allowed making some sense of the problem, I also found that enteric coated peppermint oil (sold as Colpermin ) was helpful in managing IBS pain taken one a day plus additional as needed.

Eventual strategy has been: 1. set the very basic intake for meeting minimum energy demand - so long as there's no unwanted weight gain include anything that can be managed without major gut consequences - chocolates, biscuits, whatever. 2. List healthy, desirable, essential foods by gut response relative to volume and frequency - so if a whole apple is a problem - try having a half, if several apples a week are a problem just have one or two, if pulses are problem see how a small portion once a week compares with more regular consumption etc. 3. Identify only a limited number of the most problematic foods for which never to eat. 4. Keep trying the foods at 2. and live with the consequences - yes it can be miserable but perfection isn't available, so it's a question of taking least worst option. 5. Take a daily multivitamin.

My total exclusion list consists of all dairy and the onion and brassica families. I can only eat small quantities of pulses and rice, even then not frequently. My primary protein source is Quorn, and I find animal products disgusting, but force myself to have several portions of tuna a week just to add a protein alternative. The healthy part of my diet consists largely of carrots, lettuce, celery, fennel, chicory, bananas and citrus, occasionally sweet potato.

Exclusion diets are dangerous, and need to be followed with caution - real problems arise if two or more exclusion plans are mixed together.
 
I did see a community dietician at my local GP surgery (UK) some years ago in relation to my food intolerances, though I did not learn much more than I already knew about maintaining a balanced diet. At that point I only needed to avoid gluten.

One point she did raise that was interesting is that different food stuffs can interact, for example one food stuff can cause inflammation of the gut lining giving one set of symptoms but also effects the guts absorption properties allowing a second set of substances into the blood stream that would normally not get through which can then trigger a different symptom set. For me I think this may explain why with gluten there is a twenty four hour before it triggers a worsening of my general ME symptoms and a migraine. However trying to take into account food interactions in an exclusion diet is a logistical nightmare.

It is so frustrating that there is so little good research on food intolerances in ME. For me managing my diet is as important as pacing. The number of food stuffs I have problems with has increased over the years, but clear cut patterns only become obvious when eating something that has previously been excluded from the diet especially as the effects of different foods seem to have different delays, for example the gluten effects don’t appear until after 24 hours, but caffeine will trigger a migraine in 6 hours.

In theory food intolerances can disappear as mysteriously as they appear, but I don’t know what is more likely to help spontaneous recovery, avoiding a food stuff or habituating to small amounts. However my experience has been purely in one direction with the severity and number of intolerances increasing over time.
 
Hubris said:
I'm intolerant to at least 90-95% of the foods that exist and that number has been steadily increasing over the past years. When I eat something I'm intolerant to, i get diarrhea and worsening of ME symptoms (usually both). i also get itching everywhere during sleep. I am also very underweight.

I've tried many anti inflammatory drugs for the gut, they don't do anything. Same for probiotics, etc.
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So sorry to hear this, Hubris. You mention diarrhea and itching everywhere. That sounds like it might be a histamine (MCAS) reaction? You had tried many anti inflammatory drugs, does that include antihistamines? Otherwise that might be something to try. And other, natural antihistamines together with a low histamine diet. All in order to try to dampen the reaction.

Regarding probiotics that you had tried, do you know if it was bacteria that increase or decrease histamine in the body? It’s easy to think that all probiotic is good for you, but not if one has MCAS or a histamine problem. There are some brands though that only contains bacteria that decrease or are neutral regarding histamine. That might be a good probiotic for you to try, if you haven’t so far.

I have been where you are and it’s not easy at all. Eating strict low histamine food (zeros on the SIGH-list) and taking natural antihistamines, medicine and good probiotics was the key for me. It took some time but I can eat more kinds of food now, which I’m truly thankful for. Dairy products are still a big no though in order to not have diarrhea.

I wish that you will find out what’s causing the reaction for you and that there will be a way for you to get better. What has helped me might not work for you, but I thought I would at least mention it. Best of luck!
 
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From what I have read from others this is a common pattern for ME patients with immune issues. It is a problem for me.

If you break it down to principles I think there are two things going on.


One is toxicity in food. Some foods contain molecules which are essentially poisonous but healthy immune and digestive systems can deal with them. PWME often seem to have poor liver function and problems with immune function too. Preservatives in processed food would count as potential toxins. Nightshades contain alkaloids called solanines which geve me a problem, so I cant eat potato or tomato etc.


Two is immune responses to food which can create hives and eczema and can also cause responses in the digestive system.

PWME sometimes have problems with overactive immune responses causing rheumatic joint pain, like palindromic rheumatism for example where joint pain can be symmetrical and that IMHO points to immune activity keying in to specific proteins and causing inflammation in the same place on both sides of the body. So for example I had a long period of many years of joint pain working its way through my shoulders, thumb knuckles, big toes, always in symmetry but every year or two shifting location. This indicates the adaptive immune system is looking for things to attack and getting it wrong and attacking our own proteins i.e. autoimmunity. I think it could be doing that with food proteins as well.

The good news is this kind of immune response is specific. If you work out which protein it is and remove or denature it you can reduce symptoms. e.g. I can eat lentils and yellow split pea mash if I cook it for about 4 hours in wet heat. If I cook it for only an hour it gives me migraine. That is denaturing protein in the food thoroughly. With legumes, proteins include lectins which evolved to be noxious. Not all lectins are equal.

Something to bear in mind with this is that meat raised by factory farming may contain soy and maize lectins due to what the animals were fed and these are not easily denatured by cooking. e.g. I can eat 100% grass fed beef with much less backlash than even good quality supermarket beef (from Waitrose) and I believe its due to the feed used. I also do better if I take dietary enzymes which include proteases and my guess is they help denature a proportion of any proteins which might spur a reaction.


I think @Peter Trewhitt is right about foods interacting. Something else which has cropped up for me is that according to a study on mice, short chain fats called medium chain triglycerides can TH2 shift and predispose mice to anaphylaxis. MCTs thereby make immune responses worse for mice while not being toxic themselves. I have applied this to myself, avoiding MCTs, with significantly good results (see my blog boolyblog). MCTs are abundant in dairy, palm and coconut oils.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3563838/


Conversely I have found things which reduce inflammatory responses like omega 3 oils as found in linseed oil (tastes yuk btw) or rapeseed oil, also Vit D and turmeric extract, can make my responses less severe.


One food I have found which is very safe for me to eat is white cassava gari, not yellow gari as that contains palm oil. It can be made into a mash with boiling water and also tapioca starch which is refined cassava starch (not corn flour because of the lectins nor wheat flour because of gluten etc) can be added to bind the mash so it can be worked into pancakes and biscuits. When all else fails or when I know I am entering a phase of my immune cycle when any protein will make me ill, I can eat this mash and I will be fed if not gastronomically delighted.

Anyway I have to go to bed, I hope that helps someone somewhere somewhen. :)
 
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I developed food sensitivities of about ten years into having ME (I thought I'd got away without them but turned out they were just biding their time!) I was prescribed sodium chromoglycate capsules by Dr Bansal which helps to some degree. You take them half and hour to an hour before eating.

For me, what happens is that I eat something that I react to and then a day or two later I get the d word that I can't spell. I then can't eat anything without it going straight through me and this can last for weeks. I stick to small amounts of very bland foods (dry toast, crackers, rice crispies etc). Then suddenly it rights itself and I can eat anything again. I was only taking sodium chromoglycate once one of these episodes had started to try and stop it in its tracks but I've just started taking it before every meal to try to prevent the episodes occuring. I no longer see Dr Bansal and my GP just repeats the prescription for me no questions so I'm not actually sure if this is the right thing to do but it seemed worth a try. I've also cut out spicy food and caffeine (including chocolate which sadly is one of the worst offenders for me). I used to take pepto bismol which was pretty good at dealing with flare ups and cutting short the length of time I was unable to eat much. However, pepto bismol is no longer available in the UK.
 
Jaybee00 said:
Interesting—is this taken as needed or do you take it everyday?
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I take it everyday. I occasionally try reducing the dosage but my pain invariably flares up. However I have to say that when starting on Tramadol I needed to start on a very low dose of 25mg a day, and gradually built up to 100mg where I have remained for about the last 10 years. I take a 50mg fast release form called Zamadol melt, as it can be cut up into halves. I take 25mg four times a day. I did try the slow release form but for some reason it made me feel drowsy. Probably the dosage was too high in one go.
 
mango said:
Food combinations can sometimes make a difference too. For example, eating oat porridge makes me feel very unwell. However, if I add fat to it (eg nut butter or coconut oil) I can eat it, no symptom exacerbation.
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Thank you @mango ! I tried eating quick cooking oats with peanut butter today and my stomach is fine. I had tried plain oats several times previously and got stomach pain as a result every time. Might also make a difference that they were slow cooking large flakes oats and perhaps harder to digest.

Very happy to have the possibility of oats back as an easy breakfast!
 
I feel very similar to you in your story but I am not similar in your symptoms. I tend towards constipation and I don't get the itching.

MCAS maybe? I don't know if you have SIBO or have done the other sugar breath tests that are available? Are there any allergists around that could run blood/urine on you during an outbreak, to see if there is something detectable?
 
I thought this was interesting, chanced upon it while trying to research my own food intolerance. It discusses some of the evidence that insecticidal proteins added to GM crops can harm humans. It suggests it is more than allergy, that these foods are intrinsically toxic. This certainly fits my own experience with becoming badly affected by maize and soy since the early 2000s and becoming unable to eat meat or even eggs from animals which have been fed GM feed over the last six years without developing a migraine response.

Genetically Engineered Corn May Cause Food Allergies
https://www.cga.ct.gov/kid/related/20130228_Toxic Chemicals and Children's Health Public Forum, Fairfield University/20130228/Tara Cook-Littman, Fairfield CT (Attachment) (4).pdf

The nature of insecticidal toxins added to GM crops is they are both proteins and toxins. So their affect can be partly ameliorated by measures to promote denaturation like digestive enzymes even though their effect is not allergenic. However they can still cause immune activation as toxins and it is also possible to develope allergies to them.

The genes currently added to Sygenta GM corn include 4 insecticidal toxins as follows.
https://gmoanswers.com/ask/what-are-genes-genetically-modified-corn

  • Cry1Ab (Insect resistance - lepidopteran)/PAT (phosphinothricin-N-acetyltransferase) (herbicide tolerance - glufosinate)
  • dmEPSPS (5-enolpyruvylshikimate-3-phosphate (EPSP) synthase) (herbicide tolerance – glyphosate)
  • Vip3A (Insect resistance – lepidopteran)
  • mCry3A (Insect resistance – root worm)
  • eCry3.1Ab (Insect resistance – root worm)
  • alpha amylase (dry grind ethanol production)
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Honestly I think this is a scandal on a huge scale. If any PWME have reason to believe they react badly to these then the only reliable way to prevent that is to avoid eating them including the animals which eat them. This is why I am trying to eat only 100% pasture raised meat for example as well as no more tortillas, obviously.
 
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