Foods I cannot eat

I’ve decided to make a list of the foods I cannot eat (and things I cannot drink). If it’s here assume I cannot eat even a tiny bit of it.

I have to know every single ingredient of any food I put in my mouth. If I happen to just try a bite of something, I’m risking anything from being sick to my stomach for a few hours to a few days, to not being able to breathe. Not being able to breathe means risking death. Many of the foods listed here are foods I’ve had serious reactions to. If I’ve not had serious reactions to the foods, then eliminating the foods have greatly improved my quality of life.

This is also a work in progress. I’m beginning to feel like diet is not enough to control my symptoms for a variety of reasons. I’m waiting on the LP procedure to determine the MS diagnosis before I go back to my immunologist. Anyways, the list.

  • fish
  • shellfish
  • tree nuts
  • soy
  • artificial colors – especially red40
  • gluten
  • most dairy – I cannot eat aged cheese of any kind – even cheddar
  • cherries
  • blueberries
  • raspberries
  • strawberries
  • vinegar and fermented items – yes, this means basically no condiments
  • tomatoes
  • spinach
  • pumpkin
  • spices – cinnamon especially, but also allspice, cloves, nutmeg, and ginger, also curry and chili powder
  • MSG
  • foods that contain high levels of nitrites – If I eat regular cured bacon, technically I’m risking a migraine.
  • alcohol – I drink some amounts of gluten free beer, apple cider, and mead. Probably about 2 drinks a month? Technically I’m supposed to avoid it completely.
  • preservatives – especially those based of benzoates, BHT is another one. example: I cannot eat Rice Krispies because of the preservative in them.
  • grapes/raisins
  • dates
  • eggplant
  • red beans
  • tea
  • caffeine
  • bananas – recently eating bananas has given me migraines – I’m wondering if it’s because my latex sensitivity has gotten more extreme.
  • sulfites – also used as a basis for preservatives
  • corn – I’ve developed a sensitivity to corn but so far it’s based on the source and how much I eat. That’s how I know it’s a sensitivity. Popcorn at the movie theatre means a stomach ache for two days. Snack bag size of fritos from the machine? Stomach ache for at least a day. Mixed veggies with corn for dinner? No problem I’ve noticed so far.
  • chocolate
  • oat
  • flax

There are a few things that I can eat every now and again if I don’t eat too much. Avocado is one of those. I still eat chocolate but I only get it from one or two sources which I know are allergen free and have very few ingredients. I eat chocolate bars with three ingredients in them.

There are other things I need to be careful with. A big one is leftovers. I cannot eat meat that has been leftover more than 48 hours or I’ll likely end up with a stomach ache.

If you’ve stuck with me so far…. I challenge you. Pick up your bottle of juice, soda, tea, whatever and read the ingredients. If there’s something you don’t understand? Google it. I’ll bet you go get a glass of water afterwards.

This is why I’m actually hoping that the MS diagnosis comes through as a real thing, because then I can go on immune suppressing drugs and maybe, just maybe, my body will calm down and stop treating so many different kinds of food as poison.

If you want more information, including information about histamine intolerance, check this out.

The Eliminating Scary Medical Stuff game

In roughly the last 12 months I have played this game more times than someone should have to do it in their lifetime. Bodies are weird. I’m beginning to think humans never made it out of the beta program. It’s also demonstrated just how horrible health care insurance is in this country….which is scary since having insurance is still better than having none.

Last summer I went through a rheumatologist’s battery of tests and ended up a diagnosis of fibromyalgia. It’s not Lupus! This diagnosis did actually make sense for a number of until then unexplainable symptoms and I reacted to like all or almost all of the fibromyalgia tender points.

Last summer I also went through a cardiologist’s battery of tests. This ended in a “there’s nothing wrong with your heart.” I also found out that red-40 food dye can give me tachycardia bad enough to make a cardiologist nurse insist on doing an EKG.

Last fall, I think, I started to develop a horrible rash that almost nothing would make feel better that I dealt with into the spring. I’m pretty sure now that was from the gluten intolerance I didn’t quite figure out until late spring/early summer.

Then I saw the immunologist to restart my allergy workup. He sent me to a GI doctor to check on those symptoms. The GI doctor performed an endoscopy and colonoscopy and found lots of inflammation and way too many polyps for someone my age. Also tested for celiac and that was negative. He sent me to genetic counseling – I think the genetic counselor or testing center lost my information and I only recently found the paperwork so I can consider calling – which may or may not be the old phone number from before her office moved. (The test takes 12 weeks to complete.) Additional followup and discussion with immunologist led me to try the low histamine diet for histamine intolerance. This diet has improved many symptoms.

I’ve also found out little things, like I’m chronically low on vitamin D and starting the 50,000 IU/week dose of vitamin D improved a number of my symptoms. Doing things like introducing magnesium and CoQ10 have also helped immensely.

Now, I’ve seen a neurologist about my migraines and the MRI of my brain and cervical spine found lesions in my brain and neck. This is a possible sign of multiple sclerosis. (Hey! I spelled it right on the first try!) Today I see another neurologist for an MS workup. I don’t know if this will lead to another set of MRIs this time with contrast, a lumbar puncture, and or anything else.

This makes – between last May and today – less than 12 months technically – 4 times I will have played the game of running through tests with a specialist to make sure I do not have a horrible, scary, or debilitating disease. The only good thing about fibromyalgia is that your body does not deteriorate.

Just once in my life, I’d like my body to be easy and show no signs of a scary disease – or have signs of something that’s simple and easy to fix. Breaking bell curves can be exhausting. I’m taking an academic article about MCAD to the neurologist appointment this afternoon.

*edit for more typos I missed in the first edit.

Immunologist visit – case study part 1

Last week I went to a follow up appointment with my immunologist. An immunologist is a bit like an allergy/asthma doctor except they know more about the immune system. My immune system is a special snowflake. This was my first follow up since my doctor said he would do a case study on me – as compared to throwing his hands up in the air and running in fear. I showed him information on histamine intolerance and the low histamine diet.

I waited 30 minutes and the visit with the doctor himself was about an hour and a half long. He took notes on his laptop through most of it. (MacBook Air) We went over a lot of things, including my migraines, asthma, allergies, food sensitivities and how easy (not) it is to be on the low histamine diet.

My biggest complaint for him was probably that I have to adapt the diet to me, there is conflicting sources of information about the diet, and despite my best efforts I can still have pretty bad breakthrough symptoms. Ok, those might happen on days I have chocolate – but there are other days I have chocolate where there are no breakthrough symptoms!

I also seem to be having problems with environmental triggers being worse. I explained some fun that took two days to recover from after sitting for about 20 minutes on my SIL’s couch. Shortness of breath, thrashed sinuses, foggy brain, the works! I’ve also been having problems waking up coughing in the middle of the night, like clockwork. I’ve since figured out that was a combination of two things, which I also told my doctor about. First one: environmental. Because of the fibromyalgia and increased commute times – we’ve gotten lax with vacuuming. You cannot get lax with vacuuming when you have four cats. I vacuumed the bedroom the afternoon of the doctor appointment and no coughing that night. Second thing: likely culprit was PABA in the vitamin b complex I was taking. It’s possible to be allergic to PABA and my breathing difficulties and gastrointestinal issues (I’ll spare the Internet those.) were likely caused by PABA. Especially since the issues got better over the course of 1-5 days after I stopped the supplement.

After discussing with my doctor, I’m going to research which b vitamins are useful for fibromyalgia and just take those specific vitamins instead of taking the lazy complex approach. (I’m already on just riboflavin for my migraines.) My doctor also didn’t have recommendations for me – he suggested I go with what I know my body will accept. Research required.

I kind of wanted steroids to help me get over the (likely) PABA reaction but I also didn’t necessarily want to deal with the side effects. My doctor told me to call if my asthma problems continue – even after I’ve recovered from the PABA reaction. My breathing issues have gotten better since vacuuming the bedroom and just with more time passing but I’m still having weird issues! I’m giving it a little more time and probably still calling the doctor so we can look at my asthma medicine.

Thankfully my allergy medicine seems to be keeping up. My hives seem to be better. It’s been months (?) since I’ve had a breakout. I still need benadryl but it’s as needed – not regularly. Now I need to figure out the eye allergy problems I’ve been having – but I know know if that’s a question for the immunologist or the ophthalmologist.

Doctor told me to come back in six months because I have a lot going on with my migraines. (New patient neurologist visit isn’t for over two months.) I can still call with an update if necessary and I figure I’ll go back sooner if it seems necessary. I did also find out something important – asthma and fibromyalgia should not really effect each other. (Note to self: remember to ask rheumatologist too.)

We’re definitely now going down the path where I have a ton of food allergies/intolerances caused by, at least in part (?) the histamine intolerance. I have no idea if the gluten (and now corn) intolerances are related to the histamine intolerance. My immune system is a special snowflake who is also paranoid. It seems like most of the food allergies I showed positive before are probably false positives. Problem is I might have some false negatives too. I’m still avoiding a lot of foods and paying special attention to the ones that give me acute reactions where I cannot breathe.

I’m just glad I’ve had less problems with face flushing and hives. The face flushing makes me look and feel badly sunburned.

Next steps:

1. Get migraines under control.

2. Clean problem areas of the house more often.

3. Exercise more for the fibromyalgia / asthma.