Anyone ever hear of Food Phobia? - Atrial Fibrillati...

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Anyone ever hear of Food Phobia?

DesertDeuces profile image
8 Replies

I had been diagnosed with Food Phobia in 2015, believe it or not!

I have so many food allergies that it's easier to write a list of what I am not allergic to than what I am allergic to. It took a medical assistant over half hour to list the food allergies from the Allergists' lists.

When I go to the hospital for anything, they tell me there's nothing they can give me to eat, and they won't let me have something brought in, due to hospital liability.

I told the dietician that I can eat some foods on my list because I take Prednisone specifically for that reason. They still won't let me eat anything in the hospital.

Does anyone else have this condition? I would absolutely love to hear from you!!

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Thomas45 profile image
Thomas45

As a result of a Very Rare side effect of Bisoprolol i have chronicles of urticaria and some food intolerances. That is foods which I could eat before I was prescribed a beta blocker, I can no longer eat without exacerbating the urticaria, although I still get some painful rashes daily, when I avoid them.

They include acidic ffoods like tomatoes, oranges,grapes, bananas. I'm okay with apples and pears and mango.

DesertDeuces profile image
DesertDeuces in reply toThomas45

Gives me pause for thought. I've been wondering if medication might play a role in my food intolerance. I haven't been on Bisoprolol, though. The 'food phobia' was diagnosed because I cannot even stand up to go to the kitchen to prepare food. Even when I make the effort to work through the phobia, when I get to the kitchen to even, for example, peel sweet potatoes, my mind actually seems to shut down. I can't remember why I'm there or what I'm to do. Even making a list ahead of time, my mind seems to get so fuzzy I can't even comprehend what I wrote. The times I can focus on what I wrote, I begin to cry. It's weird.

I've had so many bad effects from foods for so many years without knowing what foods were causing the symptoms, that my mind can't handle it any more, even though I've now gone through allergy testing. The list of what I'm allergic to is so darn long, that it's frustrating just knowing.

Boombiddy profile image
Boombiddy in reply toDesertDeuces

Hello,

I am sorry you are having such a rotten time with this.

It may be worth talking to Allergy UK if you haven’t already.

Are all your allergies food related?

I don’t want to send you on a wild goose chase, but since your problem is so severe it might be worth checking this out:

There is a condition called Mast Cell Activation Syndrome and it may be worth looking at the UK Masto website to see if this might be relevant for you.

(Mast cells are what the immune system releases when it encounters something it's allergic to, and with MCAS the immune system may be 'trigger-happy’).

Even if you do not have MCAS, I think they could be helpful with advice re. the problems you encounter with hospitals. I found Jess at UK Masto really helpful and informative.

It is possible for allergic reactions to cause confusion and dizziness, etc. Of course, with the level of distress you have been having, it is quite understandable that you may just have had enough! In which case, are they going to offer you any support for that?

In case this example rings any bells for you:

I suspect the AF bout that landed me in hospital in 2016 was allergy-related. I had a period of about a year where my heart was irritable (AF), and with bouts of itching all over for weeks on end, & bouts of urticaria, and sometimes mild breathing difficulties. It varies for me year to year, month to month, week to week. I already get a lot of dizziness and low blood pressure, from another condition, but I got even more confused!

Does any of this sound familiar?

Because MCAS is more frequent in people with the Ehlers Danlos syndromes and POTS **(like me), I had some contact with UK Masto, and they were helpful. I do not have the wide ranging allergies that you have mentioned, but the reactions can be very variable.

I am sorry if this is long winded, I get a bit too cabbage-brained to be brief.

I do hope you get relief.

Best wishes from B.

** POTS (Postural Orthostatic Tachycardia Syndrome) can cause dizzy, erratic fast heart, and feel weak, etc., and is relieved by sitting or lying down...

Just in case it rings any bells for you...

DesertDeuces profile image
DesertDeuces in reply toBoombiddy

Thank you for the information, Boombiddy. I'll check out Allergy UK to see what they have. Regarding whether my allergies are all food-related, no. One of my worst allergies is to sulfa-related things - sulfa, sulfate, sulfite, sulfonamide. I can actually predict rain 2 days in advance due to this allergy. I found out from an EPA researcher that 2 days prior to rain, when the humidity increases, it mixes with sulfur dioxide, producing sulfuric acid. I didn't tell him why I was asking the question. My hands get a 'grippy' kind of pain and I get really lethargic and can't think very well. Once it rains, I feel great.

I am also allergic to grasses, fragrances and some chemicals. I've been pretty careful during my life and am meticulous about what I eat and am exposed to. So, the bout I had with avocado, which I hadn't eaten for 30 years, took me by surprise.

However, I've had so many food allergies without knowing it that I just couldn't figure out what was bothering me and became afraid of eating anything without having a reaction. I'm very glad I had allergy testing to find out just how extensive my allergies are. I had tried to get allergy testing before but the doctors wouldn't approve. One doctor actually told me I didn't need allergy testing, that all I had to do was avoid what I was allergic to. How can you do that when you don't know what to avoid???

karisa profile image
karisa in reply toDesertDeuces

Hi. I think I can relate to your issues. I have had allergies for years,food allergies ,chemical allergies, u name it.my reactions were bad.with face swelling and skin rashes that were so itchy all over my body I have done allergies tests for both and nothing much did show.i was told I had slight chrome and dust allergies.to make it short I started a gluten free diet 3months ago and voila!my allergies a gone. I'm now introducing myself to stuff i would usually be allergic to and so far ive had no reaction whatsoever. I suggest a gluten free diet if you have not tried it. Wish you all the best.

DesertDeuces profile image
DesertDeuces in reply tokarisa

Hello Karisa, Yes I use a gluten free diet. There's a great manufacturer of gluten free pasta - Tinkyada. Their pasta is made from brown rice and tastes exactly like regular pasta. It doesn't turn gummy like other gluten free pastas. I love it so much I order it by the dozen packages on Amazon.

I finally had allergy testing done and I'm so allergic to so many foods that I need to take Prednisone in order to eat virtually anything. Doctor was reluctant to give it to me and quizzed me extensively on the adverse reactions. He finally gave it to me for quality of life purposes.

I am happy to say that I can now cook without panicking. I found a terrific recipe for 'No Tomato Pasta Sauce' made with carrots and beets. Just put a little bit of mayonnaise in the cooked sauce and it tastes like tomato! Since I'm allergic to grasses, I cannot use herbs like oregano, thyme, etc. So, I found some green salsa made with tomatillos and chiles at a Mexican market. I use that in place of other seasoning and it's fabulous!

Stay well!

karisa profile image
karisa in reply toDesertDeuces

Hi,happy to know you've found some help with your allergies.and thanks for the info you gave me regarding gluten free food. Will definitely try it.cheers

DesertDeuces profile image
DesertDeuces in reply tokarisa

Thank you, Karisa. I sure hope you find some positive changes. It's so tough dealing with this. I 'cheat' at times because I just can't eat such a restrictive diet all the time. I bought some Kentucky Fried Chicken Tenders, which I can tolerate very occasionally. I put it in the freezer. It should be good in the freezer for 3 months. I found out how to cook it so it tastes just like fresh! First, I wrap it tightly in aluminum foil, place in a zip lock bag and put in freezer. When I take it out, I let it get to room temp for an hour. Then I pop it into my toaster oven at 325 F for 10 minutes. I am amazed at how crispy the batter is and how juicy the chicken is!

I freeze almost all the food I cook so when I get nervous about cooking I have something at hand.

Best wishes to you!

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