Psychosomatic

[T.H.]

As anyone reading the 'vapors' post recently noticed, there's something that comes up in the super-sensitive section periodically. Someone mentions a reaction that many don't think is possible, and during the course of the discussion of 'possible' and 'not possible,' the idea that the original poster may be having psychosomatic reactions comes up. And the poster is usually told that this is likely the problem by at least a few folks.

And things seem to get a bit heated after that.

This has happened often enough in this section that I thought it might be appropriate to actually discuss this as an issue in and of itself. Because some of us don't find it offensive, and some find it extremely so. I'm hoping this might be a place we can open a dialogue about this, without it becoming personal, or about a specific problem or situation. :-)

I'll be upfront: I would not tell someone that I thought their reactions were psychosomatic. Even if I thought they were, I wouldn't. So that's the side I'm going to come from. I'm sure there will be plenty of folks to further the discussion on either side, if there's interest.

In a pretty large nutshell, here is why I would not tell someone that their reactions are likely psychosomatic:

If someone claims that they had a reaction and someone else doesn't believe that this reaction is possible, I don't think anyone has an issue about that, generally. We can disagree about whether a physical reaction is possible or not, or about how we think Celiac Disease works, or what can cause a reaction.

Responding with our disbelief is a statement of our opinion about a physical reality. 'I don't think this response is possible in this situation. I don't think Celiac Disease works that way. I don't think gluten is present in this place, or if it is, I don't think it would be in great enough amounts to cause a reaction.' We can even provide research, facts, anecdotes, whatever, to back up our opinions.

And that? That's not offensive. It can lead to some major disagreements, yeah, but it's opinion based on our own experiences and research. It can be polite, and specific, and often helpful to all of us reading it.

However, when someone is speaking about their reaction, we know only a sliver of information about the original poster. We don't know their personality, all the details about their situation, or how their mind works. We may have some information to make an informed opinion about a situation with regards to the gluten, but we don't have enough information to make an informed opinion about them. So if we're giving an opinion about this person's mental health and how that is probably affecting their physical health? It suddenly becomes very personal.

If we tell someone that they are having a psychosomatic reaction, we're stating a strong opinion about something we know nothing about: someone else and their mind. If a person were to write about how nervous and worried they are all the time and that they are looking for help in coping, I would think a discussion about how psychosomatic reactions work would be appropriate. But I really don't see how commenting on someone's mental health is warranted when they are merely sharing an observation about their own experiences, which seems the most common time for this comment to pop up.

I imagine many of us have had this exact, same label applied to us before we were diagnosed. When so many of us had symptoms that didn't match up to what a doctor was testing for and they decided we must be having psychosomatic symptoms. And in that situation, we might have come up some odd theories to try and explain our symptoms. We might have been completely wrong. We might have figured some of it out, but not all. But being incorrect about what caused our symptoms did NOT mean that our symptoms were psychosomatic.

When a doctor, knowing nothing about us or how our minds work, makes this assumption, it feels like a dismissal of our pain AND our ability to observe and reason as we try to solve why we have this pain in the first place. It's not their intention, obviously, but that's what the patient is left with.

It feels no less unpleasant when it happens in a group, however well-intentioned the members may be. Disagreeing with a person's conclusions is one thing. Commenting on the state of their mind during the course of a disagreement is quite different.

[zelda317]

Very well said!

As anyone reading the 'vapors' post recently noticed, there's something that comes up in the super-sensitive section periodically. Someone mentions a reaction that many don't think is possible, and during the course of the discussion of 'possible' and 'not possible,' the idea that the original poster may be having psychosomatic reactions comes up. And the poster is usually told that this is likely the problem by at least a few folks.

And things seem to get a bit heated after that.

This has happened often enough in this section that I thought it might be appropriate to actually discuss this as an issue in and of itself. Because some of us don't find it offensive, and some find it extremely so. I'm hoping this might be a place we can open a dialogue about this, without it becoming personal, or about a specific problem or situation. :-)

I'll be upfront: I would not tell someone that I thought their reactions were psychosomatic. Even if I thought they were, I wouldn't. So that's the side I'm going to come from. I'm sure there will be plenty of folks to further the discussion on either side, if there's interest.

In a pretty large nutshell, here is why I would not tell someone that their reactions are likely psychosomatic:

If someone claims that they had a reaction and someone else doesn't believe that this reaction is possible, I don't think anyone has an issue about that, generally. We can disagree about whether a physical reaction is possible or not, or about how we think Celiac Disease works, or what can cause a reaction.

Responding with our disbelief is a statement of our opinion about a physical reality. 'I don't think this response is possible in this situation. I don't think Celiac Disease works that way. I don't think gluten is present in this place, or if it is, I don't think it would be in great enough amounts to cause a reaction.' We can even provide research, facts, anecdotes, whatever, to back up our opinions.

And that? That's not offensive. It can lead to some major disagreements, yeah, but it's opinion based on our own experiences and research. It can be polite, and specific, and often helpful to all of us reading it.

However, when someone is speaking about their reaction, we know only a sliver of information about the original poster. We don't know their personality, all the details about their situation, or how their mind works. We may have some information to make an informed opinion about a situation with regards to the gluten, but we don't have enough information to make an informed opinion about them. So if we're giving an opinion about this person's mental health and how that is probably affecting their physical health? It suddenly becomes very personal.

If we tell someone that they are having a psychosomatic reaction, we're stating a strong opinion about something we know nothing about: someone else and their mind. If a person were to write about how nervous and worried they are all the time and that they are looking for help in coping, I would think a discussion about how psychosomatic reactions work would be appropriate. But I really don't see how commenting on someone's mental health is warranted when they are merely sharing an observation about their own experiences, which seems the most common time for this comment to pop up.

I imagine many of us have had this exact, same label applied to us before we were diagnosed. When so many of us had symptoms that didn't match up to what a doctor was testing for and they decided we must be having psychosomatic symptoms. And in that situation, we might have come up some odd theories to try and explain our symptoms. We might have been completely wrong. We might have figured some of it out, but not all. But being incorrect about what caused our symptoms did NOT mean that our symptoms were psychosomatic.

When a doctor, knowing nothing about us or how our minds work, makes this assumption, it feels like a dismissal of our pain AND our ability to observe and reason as we try to solve why we have this pain in the first place. It's not their intention, obviously, but that's what the patient is left with.

It feels no less unpleasant when it happens in a group, however well-intentioned the members may be. Disagreeing with a person's conclusions is one thing. Commenting on the state of their mind during the course of a disagreement is quite different.

[mushroom]

Shauna, I definitely agree with you on this. How many of us before diagnosis have been told that we need to see a shrink (sometimes in exactly those words , and in a somewhat pejorative and unhelpful sense) in having our symptoms dismissed. No matter how much education there is out there about the mind/body, and how it doesn't matter which one of those is suffering (or, in the case of psychosomatic illness, the body is suffering because of the mind) there still remains some negative connotations in the minds of some that the mind might be doing this, and that is different from an actual physical cause. It should not be true today, but I guess we are not too far removed from the days when families felt shame about mental illness and mental problems and used to shut away their mentally ill family members -- think Rosemary Kennedy -- that we cannot expect such stigma to disappear so quickly now that we are all supposedly more enlightened.

[GottaSki]

Great observation Shauna.

After having my symptoms dismissed by doctors for decades because all the tests they chose to run came back "normal" - I firmly believe no one has the right to dismiss another's symptoms.

Have I had incorrect ideas of what has caused my symptoms? Absolutely - having people suggest alternative reasons for symptoms is very helpful. Suggesting the symptoms are "all in the head" is not helpful at all.

One problem that all forums face - posts are written and delivered by people that don't know each other. Responses can often come across in a harsher tone than intended by the author. When someone is confused and frustrated by unresolved symptoms - these "matter of fact" responses can seem very harsh.

We should all strive to present other possibilities to those struggling - without judging the existence of the symptom.

[Jestgar]

I agree. In that situation I tend to use the words 'it seems unlikely, but trust your reaction.'

A word about psychosomatic - How many people have had the experience, or know someone that has, of drinking one particular alcohol to excess in our youth, and never being able to drink that particular alcohol again? Or fruit juice? Or that last food you ate before developing some heinous stomach illness that took you out for days? Those reactions are psychosomatic. You taught your body that something is poison, and your brain is going to make d***ed sure you don't ingest that poison again. There is nothing wrong with it. It's a well developed defense mechanism that has kept the human race alive for centuries.

[Gemini]

A word about psychosomatic - How many people have had the experience, or know someone that has, of drinking one particular alcohol to excess in our youth, and never being able to drink that particular alcohol again? Or fruit juice? Or that last food you ate before developing some heinous stomach illness that took you out for days? Those reactions are psychosomatic. You taught your body that something is poison, and your brain is going to make d***ed sure you don't ingest that poison again. There is nothing wrong with it. It's a well developed defense mechanism that has kept the human race alive for centuries.

This is an excellent explanation of the mechanism behind a psychosomatic reaction, for those who are having difficulty understanding my meaning. Very well said! It is a true reaction but not a Celiac reaction that will damage the intestines. It is important for those learning the diet to know that they aren't in danger if someone is eating a sandwich in the same room or boiling their wheat pasta while the Celiac is present. If that were the case, we'd all live in a bubble.

[tarnalberry]

I find it frustrating that when you use the term "psychosomatic", people get cranky and think you're dismissing them.

But if you use the term "placebo effect", the same people may well be more open.

These things are the same. The placebo effect is a psychosomatic response. And it is measurably real. (Like, real diagnostics of brain scans and blood tests show an effect from "nothing" when it is believed to be something.)

It's just biology. Really crazy, amazing, our-bodies-are-brilliant biology. But still just biology.

Pre-emptive edit: Let me be VERY clear - I am NOT commenting on whether or not any particular person's experience was psychosomatic or not. This isn't about 'vapors' or wine or whatever other controversial posts have come up on the board. If I had an opinion I wanted to share on that front, I would.

[IrishHeart]

I find it frustrating that when you use the term "psychosomatic", people get cranky and think you're dismissing them.

But if you use the term "placebo effect", the same people may well be more open.

These things are the same. The placebo effect is a psychosomatic response. And it is measurably real.

It's just biology. Really crazy, amazing, our-bodies-are-brilliant biology. But still just biology.

Well said.

I would not have believed it possible myself, except for having had success with lowering muscle/joint/connective tissue pain levels with meditation, deep breathing and gentle yoga. I cannot take pain medications (I have tried them all) and I pooh-poohed the whole idea, thinking my brain could never "be tricked" into such a thing. I tried to remain open-minded about it --and I would try it and get so frustrated and think "this is BS; this is not working", but I just kept at it ---and one day, it seemed to be helping. Then, I could tolerate intense physical therapy and deep tissue work to restore mobility and help reverse the muscle weakness and resulting parasthesia. I went from being unable to walk the length of my driveway without agonizing pain to going kayaking and being able to swim again this summer.

I spent 4 years with a pain level of 10 (as in "just kill me now")and now, I am at a level of about 4. Yes, I am healing from extensive damage from the celiac, and that is probably a factor as well, but doing this slow breathing, meditating and gentle stretching has allowed those "hyped up" nerve endings to stop firing on all cylinders. The central nervous system is complex and stress creates inflammatory cytokines that create more pain and other symptoms.

Several doctors/specialists told me I would need to take neurontin, anti-depressants, anti-anxiety meds, methotrexate, tramadol and oxycodone for the rest of my life and to consider buying a scooter to get around. I thought that was unacceptable.

And I can happily say this is simply not the case.

Placebo effect? psychosomatic response? I don't know (and frankly,I don't care what it is "labeled") I just know that our brains are wired to both accommodate pain levels (so I did not kill myself) and to temper them as well--and now it works to keep me functioning. Can the brain also process smells, sights, sounds and make us feel sick? Sure. Multiple chemical sensitivities are a perfect example. I had them and they were VERY real and caused many horrible symptoms in me (swollen eyelids, shortness of breath, puffy and red face, choking, headaches, difficulty swallowing, burning throat and mouth)-- yet, allergy testing "proved" I had NO allergies.

Was it psychosomatic? I don't know. The symptoms were very real--the doctors saw them and tested me for them, but shrugged their shoulders as they had no explanation.

They are pretty much gone now.

My thinking? Heal the gut; heal the rest of the body, and the CNS will stop creating so much havoc.

Just MHO

Also IMO: I would like to reiterate that I did not see the word psychosomatic used negatively or as a criticism of the person on the thread in question, but rather, it was offered by some as a possible explanation for her reaction. The OP saw that word and decided she had been called a "psycho" (her word) and that is not what was said at all.

[gary'sgirl]

Shauna, Thank you for making this post.

I stopped making posts on this board for the most part, because in my very fragile state of health, it was hard for me to mentally deal with people not believing me or making it seem like concerns of mine where "all in my head", when I was already dealing with this in my life with the people that I know personally.

I know that when things were suggested as being mental, rather than actual real reactions to a physical thing, that people were not trying to be mean. I recognized at the time that they were simply saying what they believed to be true and didn't want people to suffer because of something that was imagined, or continue to suffer because they were thinking something was gluten related that was maybe something else all together. It's really hard, though, to come to a place where you think that you might actually be heard and find people who understand and sympathized, only to be made to feel like someone thinks you're a wacko - because that is what happens a lot, even if it is not intended.

Often the way that this psychosomatic stuff is presented is very absolute. As though the person suggesting it is an expert and is the authority on the matter. I think that's where a lot of the misunderstanding comes in. Sometimes things are stated as absolute fact when really most of Celiac Disease is still a mistery. Some evidence we have about the disease might at some point be proven to be incorrect. I think we have to allow for this when people express their concerns with something. Some thing that we think are true might not be - only time will tell.

I, for one, have been completely shocked by some of the things that my kids and I react to, and we do not all have the same degree of reaction. One of my daughters will get DH from things that some people on this board claim that you can't react to. She reacts within 10 minutes, therefore I can tell you without a shadow of a doubt that it is a real reaction - she is only 7 and doesn't even really understand what gluten can be in and is not scared of it, so I know that her reaction is not mental.

That's not to say that the mind doesn't play a role in physical reactions at times, because it does. But we do need to be careful to not judge someone about that, who knows, we might be right or wrong about thinking things about others, but what we should really be doing is encouraging our fellow gluten intolerant friends.

And I think that encouragement is what most offten takes place here. That's a really good thing. We should just keep in mind that we have the ability to also deeply discourage people too, and should be careful with how we choose to address topics with that in mind.

I think everyone on this board really wants to help other fellow Celiacs/gluten intolerants, and that is so awesome! It's a true blessing to people looking for help.

[tarnalberry]

Well said.

I would not have believed it possible myself, except for having had success with lowering muscle/joint/connective tissue pain levels with meditation, deep breathing and gentle yoga. I cannot take pain medications (I have tried them all) and I pooh-poohed the whole idea, thinking my brain could never "be tricked" into such a thing. I tried to remain open-minded about it --and I would try it and get so frustrated and think "this is BS; this is not working", but I just kept at it ---and one day, it seemed to be helping. Then, I could tolerate intense physical therapy and deep tissue work to restore mobility and help reverse the muscle weakness and resulting parasthesia. I went from being unable to walk the length of my driveway without agonizing pain to going kayaking and being able to swim again this summer.

...

No big wonder at all. You learned to calm your sympathetic nervous system, hence reducing the amount of inflammation-inducing stress hormones going around, and hence reducing the amount of inflammation in your body (which generally causes havoc!). You gave your parasympathetic nervous system more ability to operate, giving more blood flow and hormonal support to the processes of digestion and repair in the body. At the same time, you (literally) rerouted the pathways in your brain by consciously choosing NOT to go down one particular thought process but instead go down another - like a muscle, strengthening the brain's ability to respond the way you want it to. And, finally, you did this while getting the body appropriate physical movement to help the lymph system move fluid and keep joints (and hence nerves) moving appropriately.

Meditation, breathing practices, and yoga are far, far, far from mystic.

(If you haven't already, IrishHeart, you might find reading "Why Zebras Don't Have Ulcers" interesting.)

[IrishHeart]

No big wonder at all. You learned to calm your sympathetic nervous system, hence reducing the amount of inflammation-inducing stress hormones going around, and hence reducing the amount of inflammation in your body (which generally causes havoc!). You gave your parasympathetic nervous system more ability to operate, giving more blood flow and hormonal support to the processes of digestion and repair in the body. At the same time, you (literally) rerouted the pathways in your brain by consciously choosing NOT to go down one particular thought process but instead go down another - like a muscle, strengthening the brain's ability to respond the way you want it to. And, finally, you did this while getting the body appropriate physical movement to help the lymph system move fluid and keep joints (and hence nerves) moving appropriately.

Meditation, breathing practices, and yoga are far, far, far from mystic.

(If you haven't already, IrishHeart, you might find reading "Why Zebras Don't Have Ulcers" interesting.)

I still have a long road to go, but YES! I am healing.

I knew that getting the parasympathetic nervous system to calm the heck down was the only way to stop the long term (and I mean YEARS of) insomnia, pain pathways and the rapidly-firing nerves. I cannot explain adequately how very bad I was, Tiffany:( I thought my nerves were fried for good from celiac. My GI doc consulted several neuros on my behalf and they said "don't count on that sizzling or parasthesia to stop"....but, they were wrong.

I tried yoga, Tai Chi, and acupuncture when I was very ill and in pain, but nothing worked.

About 15 months gluten-free, things started to turn around.

I had tried lymphatic drainage, but the practitioner remarked, your lymph moves just fine. No one could explain the excruciating pain I was in, except the spine specialist who said "celiac will cause such widespread inflammation and nerve compression, I am not surprised that you suffer so".

When I read that pro-inflammatory cytokines react to stress, I made it my focus to reduce stress. This is my daily goal. This was not easy, given the pain I was in.

I have not read that book, but I will check it out. I have read the books by Jon Kabat- Zinn, and took courses based on his works.

Thanks so much for your thoughts. IH

[tarnalberry]

IrishHeart, I totally believe that nothing worked until you went gluten free. Stress isn't the only source of inflammation and bad things! I'm glad you have found a combination of things that can help you, though!

[Celiac Mindwarp]

I'd recommend William Bloom on the Endorphin Effect if you are in the UK. Book, disc and workshop.

I think doing the relaxation and getting the happy hormones going made a big difference. I held onto a pregnancy after losing several after his course.

Dont be put off if his website looks a bit out there, his stuff has been scientifically tested, and he is very down to earth.

[IrishHeart]

IrishHeart, I totally believe that nothing worked until you went gluten free. Stress isn't the only source of inflammation and bad things! I'm glad you have found a combination of things that can help you, though!

oh me, too. My body was in flames and all those "therapies"---did squat! I spent thousands of dollars on various things, and NOTHING worked. Once I figured out it was celiac, well, things started to improve.

I think we all need a combo of things to heal. It's never "just go gluten-free" and you'll be fine. Not at my age anyway. I had various vitamin defs that needed boosting, etc. and my doc has been great with follow through care.

But it was up to me to learn how to deal with the horrid pain--or else totally lose my mind.

Thanks again for your thoughts!