What's behind ME allergies and sensitivities to foods, odors and chemicals?

Hi. Not sure whether to post this under Immunological or Hypersensitivity and Intolerances.

I saw an Allergist recently and mentioned that with ME/CFS it may be common to have allergies and sensitivities to foods, odors, and chemicals. (It's on the CDC site. )

He asked me why that may be (genuinely wanted to know).

I'm foggy and I'm not up on the research. (When I can I need to research this more myself.)

I was wondering, so I can share with him, what are the reasons or hypothesis? Any good research as to why?

It's a huge problem for me, and that things aren't showing up on allergy tests. It doesn't look like he can help me. Need to figure out what to do next. I'm in a lot of trouble with this.:/

Thanks for any information to share with him and any ideas for me.

 

A preliminary web search came up with the following assortment of links:

• Study of food intolerances in 'chronic fatigue'

https://www.ncbi.nlm.nih.gov/pubmed/8477289
(Found that 13.5% had food intolerances but concluded "These data suggest that intolerance to multiple foods is probably not a cause or the effect of chronic fatigue, but rather one of the manifestations of the somatization trait expressed in these patients.")

• General article on allergies and food intolerances in CFS including a study on CFS patients with food intolerances

https://www.slhd.nsw.gov.au/rpa/allergy/research/RoleOfFoodIntoleranceInCFS.pdf
(General info and a study on a reasonably sized group of people with CFS looking at an 'elimination diet and challenge protocols [i.e. reintroducing target foods]. These were patients already identified as having problems so this tells about the different food stuffs likely to cause problems, rather than overall incidences in the entire CFS population. I found the article a bit confusing, but they conclude "We propose that both food intolerances and chronic fatigue syndrome are manifestations of primary (perhaps heterogeneous) disorders of neuroregulation, involving abnormalities in the function of one or more receptor families which regulate synaptic transmission. ")

• Web page of Oxford Allergy Centre

https://www.allergymedicaluk.com/33/Chronic-Fatigue-Syndrome-CFS-ME
(Some what dubiously they claim "Up to 80% of all people with chronic fatigue have a history of classic allergies i.e. allergy to dust mites, pollens, moulds and others." )

• BDA Food Fact Sheet - Chronic Fatigue Syndrome

https://www.bda.uk.com/foodfacts/chronic_fatigue_syndrome_me_diet.pdf

• Milk/lactose intolerance

http://www.meresearch.org.uk/news/milk-intolerance/
(Refers to study suggesting 30% of children with ME have lactose intolerance)

 

Some random links on hypersensitivity

The Neuroinflammatory Etiopathology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) -Julian A. G. Glassford
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5314655/

In the mind or in the brain? Scientific evidence for central sensitisation in chronic fatigue syndrome -
http://www.meresearch.org.uk/our-research/completed-studies/sensitisation/

Limbic Kindling: Hard Wiring the Brain for Hypersensitivity and Chronic Fatigue Syndrome
https://www.healthrising.org/blog/2...ain-hypersensitives-chronic-fatigue-syndrome/

 

Some ill informed thoughts:

It seems that there are a number of distinct aspects that may or may not be connected [to each other].

- Allergies: seem to be primarily environmental eg dust mites or mould. May or may not be food related allergies too. Does anyone experience these as varying in conjunction with the severity of their ME or as beginning concurrently with or subsequently to the onset of their ME? My suspicions is that they predate the onset of ME. [Possibility of objective tests]

- Hypersensitivity: these relate to the senses, ie sight, sound, taste, touch, smell and taste. They seem to vary with the severity of the ME, both between and within individuals. I personally only experience such hypersensitivity when my ME is severe. I can have problems with noise, light and smell, but have not experienced problems with touch or taste. Is it that they occur in a heirarchy or can they occur individually? I would characterise this as sensory input becoming 'painful' and overwhelming. I am assuming their onset is concurrent with or post dates the onset of the ME? Personally a model of something like neurological inflammation would seem a possible explanation. [Is this a purely subjective experience or might it be measured by some type of brain scan?]

- Food intolerances: these trigger a wide range of symptoms from bloating and discomfort to IBS symptoms to migraines and others. I suspect that these originate around or after the onset of the ME, but do not vary with the severity of the ME on a day today basis. Having said that over a longer time scale I have found over the course of my ME the number and severity of my food intolerances has increased. It would seem to make sense to relate these to things like the gut biodome and to the permeability of the gut lining. [Only identifiable by elimination diet and reintroduction challenges]

- Problems with medication - I am not sure that the problems people report with different drugs/medications relate to one of the three aspects above or are a different issue.

 

Celiac disease was reported by Simon Wessley as being more prevalent in those with ME/CFS in 2001 page 336
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1731400/pdf/v054p00335a.pdf

and here
http://www.ncf-net.org/forum/celiac.html


Studies are now looking at Celiac nephropathy and this could tie in with the pain ME patients have and dispel the FND myth ?
https://www.verywellhealth.com/gluten-and-neuropathy-562315

This looks interesting non-invasive serum chromogranin-A
http://www.ncf-net.org/forum/chromogranin.html

 

I think that letter was implying that people with coeliac disease were being misdiagnosed as chronic fatigue syndrome. (There is no mention of ME.) That would be very plausible since coeliac disease often goes undiagnosed and is very likely to make people feel fatigued.

 

My thinking is that if people are sensitive to odours this is going to be similar to sensitivity to light and sound, nothing to do with allergy or immunology, purely a neurosensory thing. I am still unclear about whether there are good data showing a real increase in true allergy in ME/CFS. It would not fit with any theory I know of since none of the theories of ME/CFS are about the allergic side of the immune system.

 

But what about food intolerances, rather than allergies. There are various very normal foods my wife has to steer clear of, as they have given her severe stomach cramps etc in the past. We are both very aware of how easy it is to mis-ascribe such symptoms to something, and be confused over causation, but over the years we have tracked when things have gone wrong, and invariably one or other of the "usual suspects" have been in prominence on an ingredients list, but we just missed.

There are of course many people who experience food intolerances with no ME/CFS. So at best all we can both say that my wife has both ME and various food intolerancies, and so to us it would not be surprising if there was some correlation.

 

Very true.

At a personal level I have eczema which is made worse by histamine rich foods or those which increase levels of histamin in the body eg tomatoes, chocolate, salami, ham, alcohol.

In eczema, mast cells are involved and you do so see mast cells in & around the the ME literature.

I'll let someone with greater expertise, take over here...

 

What might be an interesting study (if not already done) would be to compare two populations:

• The general population, and prevalence of well-diagnosed ME in that population.
• A population of known, well-proven food intolerance sufferers, and prevalence of well-diagnosed ME in that population.

 

I’ve very interested in this. My experience of sensitivity to odours – in my case it is particularly perfumes and sprayed cleaning products – is quite different to my sensitivity to noise and light. With noise and light it is just very unpleasant – similar to being subjected to loud noise with a bad hangover, or someone scratching their nails down a blackboard. The actual feeling is different but it’s similar in the sense that it’s very unpleasant but it doesn’t have much of a lasting effect after the stimulus ends. But with odours (and with food sensitivities) it is very different. A very short exposure to a perfume can trigger a big flare up of symptoms which can last for days or more. I appreciate that what one feels and what is happening are not the same thing, but it very much feels like some sort of allergic immune response. In fact, when I was first unwell, I thought that I might just have developed an allergy to something.

 

It's well known that people with asthma and migraine are randomly sensitive to odors, foods, and so on, and this is not viewed with suspicion in these disorders. However I am not sure the exact reason is known (especially not for migraine, which is not well studied).

I expect in ME there are a variety of causes, many of which have been mentioned.

e.g. some other major disease, whether as a misdiagnosis or a co-occuring diagnosis: celiac, Crohn's, proper allergies, mastocystitis, migraine, and so forth. including autism or some nonspecific sensory processing disorder. Or maybe sensory processing disorder could be a complication of ME?

some food intolerance, such as fructose intolerance, salicylate intolerance, excitotoxin sensitivity, and so forth. SIBO seems to be related to fructose intolerance.

Mast cell activation syndrome. Not sure this is proven to have increased incidence in ME or not, but it is shown to have increased incidence in Ehlers Danlos syndrome as well as other disorders. Not sure anyone knows why, though.


see also
https://www.merckmanuals.com/profes...ption-syndromes/bacterial-overgrowth-syndrome
https://www.hopkinsmedicine.org/gas...ne/small-intestinal-bacterial-overgrowth.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3753019/
https://www.aaaai.org/conditions-and-treatments/related-conditions/mcas
https://www.nyit.edu/files/events/content/171208_EDSSymposium_Maitland-MastCellActivation.pdf
https://www.aaaai.org/ask-the-expert/mastcell-ehlers-danlos

I did not read all of these. Too much information to take in. Some I read previously, and some just appeared like they could be helpful.

 

I think it is extremely unlikely that there would be an immunological reaction to a volatile substance of the sort that mediates food odours. These tend to be of molecular mass in the hundreds . T cells can only recognise peptides derived from proteins with mass in the tens to hundreds of thousands. Antibodies do not do anything much, even if they bind, with molecules this small. Small molecules can act as haptens if they bind to proteins but the amounts involved in odours are so minute that it is very hard to see how a symptomatic reaction would occur.

I am not aware of any evidence linking odour intolerance to allergies or asthma.

 

Perhaps except for special fragrances like certain perfumes?

see: Patch-test results of the North American Contact Dermatitis Group 2005-2006, Dermatitis. 2009 May-Jun;20(3):149-60.

"Other common allergens were topical antibiotics, preservatives, fragrance mix I and paraphenylenediamine."

https://www.ncbi.nlm.nih.gov/pubmed/19470301

 

I wrote about my experience with food intolerances diagnosed as "pseudo-allergy" here: https://www.s4me.info/threads/pseudoallergy-and-food-intolerances.7751/

 

It sounds as if this is something you rub on, not something you smell. Small molecules can interact with skin to produce immunological sensitivity.

 

In Canada they are finding that food allergies/intolerances have increased significantly over the past 10 years in people 50 and older. In the past it was rare for adults to suddenly develop food allergies and they don't know why this is happening now.

 

Thank you everyone! This is helpful. Too foggy but to skim right now. Will read them all more thoroughly later and add likes. i really appreciate everyone responding. Thank you!

 

That people are having symptoms is not controversial nor unknown.

https://www.lung.ca/lung-health/air-quality/indoor-air-quality/scents
https://www.ncbi.nlm.nih.gov/pmc/?term=asthma+odors
https://www.ncbi.nlm.nih.gov/pubmed/26788835
https://health.clevelandclinic.org/how-to-keep-holiday-scents-from-causing-asthma-attacks/
https://connect.mayoclinic.org/discussion/fragrances-and-asthma-allergies/
http://www.nbcnews.com/id/45181988/.../air-fresheners-can-trigger-allergies-asthma/


The mechanism is poorly understood.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1849925/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5014743/