A slap in the face. Just been told my food triggers are all psychosomatic

[misseb]

I have POTS and Hypermobile EDS.. Suspected mast cell problems. I have chronic fatigue and presyncope after the smallest amount of food and fermented foods leave me shaking, hungover and bring on POTS attacks the next day. 

 

Just had a tough first meeting with a Gastroenterologist. 

They basically told me that my assumed food triggers for POTS are psychosomatic. That there is no proof that a large meal can cause a fatigue attack more than a small. She sighted POTS as a benign disorder. They pointed at my childhood trauma as being the cause of my poor relation to foods. That my brain is wired to see certain foods as unsafe. And that my fear around foods is now causing the symptoms. I tried to explain that a fork full of rice can have me gasping for air and unable to move for hours but she wasn’t listening.  That chocolate leaves me rushing with adrenaline. That my limbs swell after foods but she said I can’t see a connection between foods and POTS. 

 

She probed me “ What do you think the treatment for chronic fatigue is Emma ?” Through the tears I said no it is to encourage movement. “Well then you need to encourage yourself to eat.” 

 

I just sat and sobbed throughout the consultation. Felt bullied actually throughout and left exhausted having to fight my corner. I feel in a spin and so down right now. I’ve lost so many days to eating the wrong thing and it setting me off for a few days unable to do anything. I’m walking a type rope with foods and I really needed help today. Only yesterday I was on the sofa for hours unable to stand not recognising my surroundings after eating lunch. 

 

Want to stay positive and open it up and see if anyone else has had this reaction before. To stay open and think that maybe is it in my head ? Can I therefore try to change this ? 

 

Any one have any knowledge on the psychosomatic relationship between POTS and food ? 

[MomtoGiuliana]

So sorry you were treated this way by a physician.

I have never heard of a psychosomatic relationship between POTS and food.  I think one challenge with POTS is that bc it affects the nervous system it can masquerade as anxiety and doctors who don't understand this, can misinterpret our symptoms.  Also as patients, when symptoms are very severe, it can be hard to separate what is anxiety driven and what is being driven by POTS--at least I speak for myself in that regard!

Definitely POTS patients have reported foods setting off symptoms.  I used to have to eat a very low carb diet to prevent the most severe symptoms, for example.

Have you been able to keep a diary of foods eaten and symptoms?

There is also a condition called mast cell activation disorder.   Some POTS patients have this.  You may want to look into that.

[StayAtHomeMom]

Have you tried being allergy tested? There are multiple types of allergy tests and that may be a better route than the GI doctor. 

[p8d]

I agree with the others.  I also suggest a new, knowledgeable gastroenterologist.  Can you ask your pots Dr for a referral?  They might know of one who is familiar with pots.  What about a functional medicine Dr?  They are often more used to dealing with food sensitivities.  Can you see an allergist/immunologist about mast cell?  I found a a good primary care Dr and allergist on a local pots Facebook page.  I just asked for referrals and people with pots replied.

[misseb]

Thank you so much. It's hard not to feel like you're going mad after a moment like this. I'm finding this journey so lonely and today was another blow. 

I was referred by my POTS specialist to her and she has knowledge of EDS. I couldn't help but feel that she took pleasure in saying all this. Quizzing me on why I thought things were a trigger in a horrid cruel way.  She was even saying that rapid gastric emptying is not possible with POTS and debunking things my previous GI Prof had diagnosed - Prof Aziz - who has multiple papers and even personally raises money for EDS. I can't continue to see him as my private insurers have pulled out. 

I am intolerant of all high histamine foods even down to tomatoes, and fermented foods are a killer. I have been tested for histamine intolerance by a mast cell specialist immunologist but it came back negative in the histamine tests. But it's often hard to test for histamine intolerance. I'm wondering if histamines simply trigger my POTS. Garlic and onion leave me in bed the next day shaking and with blurred vision. She again said she doesn't see how that is possible. 

 

Good advice - I think I'll go back to my autonomic unit and ask to be seen by someone else.  

[bombsh3ll]

Yes I agree you should see someone else. That doctor sounds like she lacks compassion and it is often those with least knowledge who label things they don't understand as psychosomatic. 

It is established fact that large meals and those high in carbohydrates can worsen orthostatic disorders as more blood is diverted to the gut for digestion and away from the central circulation, worsening POTS symptoms. Also the amount of fluid & salt we take can lead to nausea and reduced appetite. I have certainly come to hate eating since developing POTS whereas I previously loved my food! Whilst I am not sure about particular foods affecting POTS in general, that doesn't mean you personally don't have an allergy or intolerance. I have also read a number of studies indicating altered GI transit in POTS and EDS, albeit not in all patients. I have always had reflux and slow transit (I have EDS) long before developing POTS.

In the meantime perhaps you could see a dietician or start a food/symptom diary to identify particular patterns. Often "treatment" is simply avoiding the culprit foods anyway. 

On the other hand, it could be a positive in a way that your symptoms vary with food, as this leads to the possibility of using this as a tool to control symptom severity. 

I think from the doctor's point of view though, and I'm not defending her manner, but she probably also sees a lot of healthy but neurotic people who are very picky about what they eat and consequently develop POTS like symptoms and fatigue as a result of malnutrition. It is just a shame she is not able to differentiate someone with genuine illnessess ie the zebra among the horses.  As for POTS being benign, how would she like to not be able to stand or sit up for long without fainting?!

B x

[Lily]

I'm going to come at this problem form the other side:  What if she is correct?  If you do indeed have psychological issues with respect to food, then consulting a psychologist might be a good idea.  The psychologist ought to be able to either confirm what the gastroenterologist said, or else tell you that it is not so in your case.

[MomtoGiuliana]

That is a good point Lily.  If a doctor feels there is a particular cause of something, even if we are skeptical it does not hurt to follow through and have it evaluated by a specialist.  And mental health does hold a stigma that can prevent people from getting the care they need.  I had a doctor that kept stating my problems were rooted in anxiety and depression.  Finally I agreed to see a psychologist.  She ruled out significant psychological problems.  If nothing else, this was helpful documentation to provide when seeing my doctor and other specialists.

[p8d]

I find this “She was even saying that rapid gastric emptying is not possible with POTS and debunking things my previous GI Prof had diagnosed - Prof Aziz” extremely disturbing.  Many of us have rapid gastric emptying.  I almost died from it so it’s nothing to blow off.  Autoimmune diseases are well known for inability to tolerate nightshades.  In my case my joints hurt terribly the next day.  Have you ever been evaluated for autoimmune disease?  Many of us have co-morbid autoimmune issues.

[StayAtHomeMom]

9 hours ago, misseb said:

Thank you so much. It's hard not to feel like you're going mad after a moment like this. I'm finding this journey so lonely and today was another blow. 

I was referred by my POTS specialist to her and she has knowledge of EDS. I couldn't help but feel that she took pleasure in saying all this. Quizzing me on why I thought things were a trigger in a horrid cruel way.  She was even saying that rapid gastric emptying is not possible with POTS and debunking things my previous GI Prof had diagnosed - Prof Aziz - who has multiple papers and even personally raises money for EDS. I can't continue to see him as my private insurers have pulled out. 

I am intolerant of all high histamine foods even down to tomatoes, and fermented foods are a killer. I have been tested for histamine intolerance by a mast cell specialist immunologist but it came back negative in the histamine tests. But it's often hard to test for histamine intolerance. I'm wondering if histamines simply trigger my POTS. Garlic and onion leave me in bed the next day shaking and with blurred vision. She again said she doesn't see how that is possible. 

 

Good advice - I think I'll go back to my autonomic unit and ask to be seen by someone else.  

Rapid gastric emptying is a good word for that. My boss (has a degree is the medical field) said it takes 24 hours for food to go through you. No way can you eat something and cause diarrhea 15 minutes later. My argument for that is that the food hits my stomach and my stomach sends an emergency signal to empty my bowels.

This has gotten better for me since I started the Keto diet. Not sure why the carbs would make that big of a difference because I don't have celiac. But it has been my experience it has been amazing. Unless I eat a lot of the sugar free chocolates. 

[Hippopotsamus]

Feeling like crap no matter what you eat is miserable. The fear about what kind of reaction your body is going to have is such a huge source of stress too. I definitely understand. I think that histamine has been a large trigger for my symptoms as well. You might look into DNRS? I’m using it to work on my food intolerances, a lot of other people have had success with it? People who were down to 5 “safe foods”. I used to be down to about 10 when I was at my worst. And I was sensitive to food temperature, volume, too much protein/fat at once at one point too. I also had bad pots episodes after seafood, nuts, wine, tomatoes, berries, medications, things I have had all my life. Just a couple of bites then the “feeling of doom”, lightheadedness, tachy, shaking, then out of it for days. But many people have totally recovered and they eat anything. It works on the part of your brain that deals with the fight-or-flight and trains it to have normal healthy responses instead of sending out the alarm signals to the rest of your body any time you eat something. Our symptoms are absolutely real, and it is because our stress response system has become dysfunctional somehow. My food sensitivities appeared at the same time as my POTS and I am working on healing both with this program. 

[Jan]

Correlation does not prove causation.

When I was first diagnosed, and desperate to find a cause for symptoms, I came to this forum and found many people reported food triggers.  I started giving up everything people on this forum found to be triggers.  Potatoes, tomatoes, carbs, veggies, dairy, fruit, you name it, I felt sick after eating it.

Eventually there was nothing left to eat.

What I eventually found was that symptoms would flair unrelated to what I ate.  Sometimes symptoms are just worse than others and I found tying it to the last meal killed my quality of life and increased my anxiety.  And I was wrong.  What I did find, was thinking a food would be a trigger turned it into a trigger. And yes, that was a psychological problem for me.  As much as I love this forum, and it probably saved my sanity most of the time, there are times when I have to be cautious and remember that what applies to one person, does not apply to me. 

I suggest an elimination diet.  Find a couple of foods you aren't afraid of and eat them.  If you are symptomatic, change it to a couple of other foods.  If you find food you can tolerate without symptoms, add another food, one at a time.  If you have symptoms no matter what you eat, your symptoms may not be related to diet.  

That said, very large meals are not a good idea for anyone.

 

 

[misseb]

Thank you all for responding. I haven't been tested for an auto immune disease but will pursue that. DNRS sounds incredibly interesting I will look into this too. I am open to trying anything right now, and one thing I am learning on this journey is that I have to stay curious. 

 

 

[DizzyGirls]

You might tell the next doctor who disregards you like that.... "the absence of evidence (according to her) is not the evidence of absence."

Both of my daughters have issues with food.  Both of them are lactose intolerant and one is now gluten intolerant.  Food also does affect her POTS.  She's also got MCAD as well as EDS, Hashimoto's, and possible RA and/or lupus.  Just because that doctor hasn't put 2 and 2 together, does not mean it can't happen!! That just irritates me to no end! You hang in there and know that you've got a ton of support here.  I couldn't have made it this far as a caregiver without their help.

[p8d]

If your Dr doesn’t believe that pots can cause diarrhea show the next one this https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/symptoms-causes/syc-20369829 maybe they will believe Mayo!

[bombsh3ll]

20 hours ago, misseb said:

DNRS sounds incredibly interesting I will look into this too. I am open to trying anything right now,

Don't be taken in by people trying to capitalize on those with chronic illnesses who are desperate and will try anything. I have tried the DNRS and whilst I can see its usefulness in psychosomatic illnesses, anxiety etc, it isn't suitable for organic illnesses. I have EDS too and no amount of positive thinking or visualization will change the collagen I was born with. They didn't honour the money back guarantee either.  If you do decide to try the DNRS, try and get a second hand copy which will save you money (I sold mine on ebay for less than half what I paid). 

B x

[yogini]

On 11/27/2018 at 8:20 PM, StayAtHomeMom said:

Rapid gastric emptying is a good word for that. My boss (has a degree is the medical field) said it takes 24 hours for food to go through you. No way can you eat something and cause diarrhea 15 minutes later. My argument for that is that the food hits my stomach and my stomach sends an emergency signal to empty my bowels.

This has gotten better for me since I started the Keto diet. Not sure why the carbs would make that big of a difference because I don't have celiac. But it has been my experience it has been amazing. Unless I eat a lot of the sugar free chocolates. 

Many things can cause diarrhea just after eating including food poisoning, IBS, Chron's disease or lactose intolerance (if you eat lactose).  I sometimes get it from eating cheese.

[StayAtHomeMom]

8 hours ago, yogini said:

Many things can cause diarrhea just after eating including food poisoning, IBS, Chron's disease or lactose intolerance (if you eat lactose).  I sometimes get it from eating cheese.

My son and I both have had "rapid gastric emptying" for the last few years. At first I thought it was a food allergy (we have a family history) but I can't pinpoint one single thing that sets it off every time. And since I started my keto diet it has been few and far I between now. 

[Peter Charlton]

Worst thing I ever did was revealing to health professionals about my abused and neglected childhood, like that wasn't bad enough, they now use it as an excuse to not treat or investigate me because they can just blame it on my childhood, and clear another patient off their busy books.

I did reason with one cardiologist that I had gone my whole life with no psychosomatic  symptoms from child abuse until the very day they put me on beta blockers, "why would childhood anxiety manifest itself the day I take beta blockers?" I asked, "beta blockers disrupt the Autonomic Nervous System and every one of my symptoms is a symptom of a disrupted ANS, surely that warrants at least investigation?",  said cardiologist apologised for blaming it on childhood anxiety, unfortunately the Autonomic Neurologist at UCLH seemed very interested in my childhood as the records are on my notes, and has discharged me rather than carry out more appropriate Dysautonomia testing.

One trick you can try, call their bluff, if they say its psychosomatic, then insist on being referred to mental health specialists, I did, right away the Psychologist said to me, "I can see you don't have even slight anxiety, they are always doing this, it makes me so mad", and she discharged me right back to my GP telling them to find the real diagnosis. I have been called in to see my GP again next week, I might suggest to her that she refers me to mental health again just to waste the money they think they are saving by fobbing me off!

[AngieP]

I found your post very upsetting to read. I hope you see another doctor.

Eliminating gluten and sticking to a healthy wholefoods diet greatly reduced my POTS attacks.

When I do accidentally eat gluten through cross contamination it triggers a huge POTS attack - high heart rate, chest pain, the shakes and abdominal pain.

For me there is a clear link between diet and my attacks.

Good luck with finding an informed, compassionate medical professional who will listen to you.