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Can't eat most foods - anyone else have this or know possible causes?

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Hi Everyone,

I have POTS. I can't seem to find out "what" is causing my food issues.  

I can only eat a few foods that we have to cook for very long (undercooking or uncooked makes ears and throat itch).  I react to all other foods (rashes, swelling, stomach issues,dry mouth etc).  Negative allergy tests. This started 16 years ago after anaphylaxis  

 Does anyone else have this or have any idea of why it happens (test recommendations and names of conditions welcomed).  Thanks for your help. -RJS


foods tolerated:

Boost vanilla 

plain muffins (flour eggs butter baking soda milk) 

steak um (beef. Plain. No roll )

mac and cheese (twice cooked. Pasta. Cheddar. Milk. Butter)

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Dear @RJS - have you been tested for MCAS? This could cause severe allergic reactions as well as POTS. An allergist or most ENT's can test for this with labs and urine tests. It is usually treated with H1 and H2 blockers. --- My mother ( in her eighties ) had severe POTS symptoms in her middle age and was tested for allergies and was allergic to almost all foods. She had to go on an elimination diet and then slowly reintroduce different foods. She is better now ( also gets treated for her POTS ).  Have they tested your food allergies with a blood test? -- Do you tolerate bone or chicken broth? This could add some valuable nutrition. --- What have your docs said to do? Have you seen a nutritionist? Most hospitals have one and they can give you tips on what to eat so you can get the nutrition you need. Best of luck!!!!

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What kind of allergy test did you have? Personally I have had a scratch test and an intradermal. Nothing came up on the scratch test, but I have two types of outdoor fall molds on the intradermal. My allergist hates the scratch testing because it can be unreliable. 

I would look into MCAS. Not sure what is needed for testing of it, but having so many allergic reactions sounds like it needs to be tested for. 

I would keep a food diary to show foods you have tried and their allergic reactions. My cousin has a similar issue and she can have pizza from one place but not another. She has a food diary to help keep track. Also she says when she eats something she shouldn't it lays her out for 2 weeks. From one food. Not sure how she does it. 

Good luck. 

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Have you been tested for environmental allergies? If not, I highly recommend talking with an allergist about all this. There are a few possibilities they can explore. 

I had significant reaction to a food that we believe may actually have been a cross reaction with my environmental allergies and not a food allergy at all.

Keeping close records are important- because there are not always great tests for some of this, but recogning patterns can help guide them.

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I have had severe pain reactions to foods - so not the same type of reactions that you are having but a reaction to food.  I've been diagnosed with fibromyalgia (came before POTS diagnosis).  You've gotten farther than I did with an allergist.  I was told that they only dealt with anaphylactic type reactions.  I was so devastated because food seemed to be a primary trigger for me and the pain was unbearable.  I spent two years eating only 6 foods (grass fed beef, carrot, broccoli, cauliflower, zucchini, bananas).  I feel your pain and you have my empathy.  

My thought is that the ANS is getting triggered - just like sound or light or other things are triggers for some people.  I second the suggestions made: test for MCAS, keep a food diary.  I suggest trying whole food versions of what you are eating now that is processed.  Can you eat plain cooked beef? Can you tolerate spices that you add yourself?  Are you able to mix up the foods that you can eat - like making pancakes or crutons with the muffin recipe or having steak um with pasta, or cheesy muffins?  Try mixing things up and see if its an ingredient issue or the fact that your mind is locked onto certain foods and gets triggered with anything else.  If it's not an ingredient issue but mixing them up triggers you, then look into ways to calm the CNS and decrease reactions to triggers.  If you can mix things up, then slowly add small amounts of new foods - preferably whole foods, like vegetables or fruits.  

Have you found ways to manage your POTS symptoms?  

What caused the anaphylactic reaction that you had in the past? I'd look at that and see if there is any connection. 

I am a health care practitioner and have worked with patients who have food as a trigger but is not an actual allergen for them.  Things can get better. It does take time and patience.  My own food reactions are much better now also - years later.  I felt painted into a corner and so limited.  I never ate out and had my own foods for holidays as what was being served was not on my ok foods list.  I kept to a limited diet and took all kinds of supplements - hard to say what made things change for me.  

If it's not an actual allergy for you, then you are painted into a corner too and need to find the tiny bits of wiggle room that exist.  Change up how you ingest those limited ingredients and then slowly add in new foods in tiny amounts.  If it's a POTS related reaction, then it may change with time.  

Good luck and keep us posted as to how you are doing.  

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