Fear of Food

[MarcoS108]

I am just curious to see if anyone else on here started to develop a fear of eating after developing their dysautonomia. Mine got to the point where I got down to 112 pounds as a 5’8 male and my metabolism got so low where I could only eat around 700 cal a day without it being too difficult on my autonomics. It turned out each time I was eating in fear it will create an auto immune response and I wasn’t absorbing any of The nutrients from my food

[MikeO]

Well i can tell you that i do not like eating generally don't do well with it. It is said that folks with dysautonomia also develop IBS. I know when i have a flare or not i may not eat for two days. And yes i do fear eating eating but i know i need to. What has helped is playing around with foods that i can tolerate, takes time to figure this out. I am still working on it.

Rumour is to eat soft foods that are easy to digest and more smaller portions i.e...5 small meals instead of 2 or 3 larger ones.

[Pistol]

@MarcoS108 - I never developed an actual FEAR of eating but my eating habits completely changed. My GI tract was very much affected by dysautonomia, and I had severe GERD, inflammation etc. I had to re-learn how to eat in a way that agrees with me. Yes, @MikeO, I too found that eating 6 small "feedings" a day is better than 3 meals a day. I am now an official grazer - I kind of eat all day but not a lot in one sitting. When I do I usually pay for it by ending up in bed for a few days! And my go-to thing I like to eat inbetween are pretzels!

[MikeO]

17 minutes ago, Pistol said:

I am now an official grazer

OMG @Pistol i thought i was a lonely grazer in a field of dysautonomia . The smaller meals do help. 

[MarcoS108]

53 minutes ago, Pistol said:

@MarcoS108 - I never developed an actual FEAR of eating but my eating habits completely changed. My GI tract was very much affected by dysautonomia, and I had severe GERD, inflammation etc. I had to re-learn how to eat in a way that agrees with me. Yes, @MikeO, I too found that eating 6 small "feedings" a day is better than 3 meals a day. I am now an official grazer - I kind of eat all day but not a lot in one sitting. When I do I usually pay for it by ending up in bed for a few days! And my go-to thing I like to eat inbetween are pretzels!

It is odd, I never had issues with my digestive system with my POTS (IBS, GERD, etc). If I eat a meal too big I’ll have to lay down for a couple hours. I can’t even imagine a couple days from one meal.

[MikeO]

@MarcoS108Not sure about your system. All i can say is when my digestive system shuts down either while in a flare or otherwise eating is the last thing you want to do. Large meals also cause issues like low blood pressure, nausea and feeling full and bloated for a day or two. What i eat also makes a difference personally i would rather eat a small meal that does not make me feel sick than one that makes me have to take some down time to get over it..

Saying the above some folks that eat a small amount end up being in pain. Sure that would cause some fear of food as well as loss of weight  

[Rexie]

I don't/can't eat when nervous, upset, or stressed by doing too much. I can generally always drink a smoothie. My current favorite is a generous dash of salt, with a mix of blueberry nectar, a hemp drink & 2% milk. You could find a mix you like to help keep fluids and nutrition going and weight up. I'll usually take my favorite GABA enhancers like ashwagandha 15-20 minutes before eating small, real meals. Although I have a limited diet due to interstitial cystitis, and have occasional esophageal spasms, I don't fear eating but do get irritated or frustrated or just plain bored with limitations to eating with the abandoned gusto of my yesteryear. I sometimes find that starting with a hit of cannabinoids and a tasty dessert gets me more into the rest of a meal. Many years ago during Lyme disease I had a script for Marinol (dronabinol), a man-made form of THC that helped spark appetite, relieved nausea and discomfort, and provided a pleasant, short-term, minor buzz. There is now a similar THC product docs can prescribe - Cesamet (nabilone). 

It's nice not to worry about weigh gain so I eat healthy and class meals when possible (prepared by others - cooking is not my thing), with the aim of treating myself to something really good. Sometimes though, eating is just a necessary job to me.  Try to make eating fun when possible and minimize your fears. 

[Pistol]

11 hours ago, MikeO said:

OMG @Pistol i thought i was a lonely grazer in a field of dysautonomia

😂

[CallieAndToby]

Have y'all done a food diary? Seems basic but when I was first diagnosed with Interstitial Cystitis and for any new patient, the first thing is to keep a food diary to see what bothers the bladder. It was a ton of things for me and I've just learned after decades what I can't eat and what I can eat. 

[MikeO]

Well i kinda looked at this from a perspective if you get stung by a bee you will avoid it next time you see one. I may try a diary just cause it makes sense and i can bring it into a Dr's visit if needed.

[CallieAndToby]

2 hours ago, MikeO said:

Well i kinda looked at this from a perspective if you get stung by a bee you will avoid it next time you see one. I may try a diary just cause it makes sense and i can bring it into a Dr's visit if needed.

It's just something they medically do for IC. You start to form patterns. Like I can't have potassium or citric acid so any electrolyte drinks are out for me. 

[MarcoS108]

3 hours ago, CallieAndToby22 said:

Have y'all done a food diary? Seems basic but when I was first diagnosed with Interstitial Cystitis and for any new patient, the first thing is to keep a food diary to see what bothers the bladder. It was a ton of things for me and I've just learned after decades what I can't eat and what I can eat. 

Yes, I spent a few months doing one before I had pathsI spent a few months doing one before I had POTS as I wanted to see if I had any food intolerances

[MikeO]

1 hour ago, CallieAndToby22 said:

It's just something they medically do for IC. You start to form patterns.

so do you do a log similar to this? I do spot check my bp's before i eat and about 45 min - ish afterwords and it does show a hypotensive drop in blood pressure which makes me feel ill. I do know carbs like pasta is harder on me for sure.

  

[CallieAndToby]

19 hours ago, MikeO said:

so do you do a log similar to this? I do spot check my bp's before i eat and about 45 min - ish afterwords and it does show a hypotensive drop in blood pressure which makes me feel ill. I do know carbs like pasta is harder on me for sure.

  

I've never done a diary for dysautonomia but when I did it for Interstitial Cystitis which is a really bad chronic bladder disease, I just kept track of what bothered me in a diary book that was given to me. It looks like you're doing a pretty extensive job. I looked at foods suggested by some dysautonomia websites and all the things they recommended like tomato soup would totally burn and flare my bladder so..... it's been tough for me figuring this all out. 

[gertie]

I have become afraid to eat because of IC, IBS,kidney disease, food allergies.  I only eat a few bites 2 or 3 x's a day of food  I think is safe for me to eat.  Then I wait to get a bad tummy ache which happens often.   I admit I've become almost, if not, paranoid about this. 

[Pistol]

Oh @gertie - I am so sorry! That sounds horrible, no wonder your are "paranoid" about food! I also have IBS and IC, so I have to follow a strict diet as well. I have learned what to avoid and can deal with problems when I revolt, as long as I only do it at times. But I remember how I dreaded eating when I was at my worst. I saw a nutritionist and she advised me on what and how to eat to avoid my worst symptoms, and that really helped. Especially her explaining that steamed or cooked veggies are a lot more tolerable for both IBS and IC, and as long as we also eat the liquid they were cooked in we dont loose any of the nutrition from the cooking process! I also found that lean proteins give me a lot more energy than carbs, and they make me feel fuller longer. I try to eat natural sugars and avoid processed foods, which helps. 

[Peach]

My fear lies in….if I swallow it will it continue down esophagus or sit there, if gets to stomach will it sit there or continue on, if lucky enough to make it to the intestines what fresh h*** is going to happen here then a good exit strategy is always needed to complete the process. If you know you know 

[cmep37]

@Peach I do know - have you ever tried Domperidone?  It is a real life saver for me when I'm in a flare and my digestive system goes on strike.  It basically speeds up your digestive system by increasing the contractions of your stomach and bowel.  My GP won't let me take it for any longer than a week at a time (it may have an adverse effect on your heart if you take it long-term) but I find I don't need to - generally within 2-3 days it has done it's job!  I know it's not regularly prescribed in the US but it is a really useful drug for those of us with gastroparesis. 

[MikeO]

37 minutes ago, cmep37 said:

when I'm in a flare and my digestive system goes on strike

This has to be the worst for me when this happens i don't even digest my food wholly. I did have success with Mestinon getting my parasympathetic motivated and pooing back on track. about a month ago i stopped taking it so far i have been having normal BM's 

[yogini]

It’s somewhat normal to have fear of your triggers.  To this day I dread taking the stairs and avoid them like the plague.  However if it’s to a point where it is causing you to drastically lose weight it might be helpful to seek counseling.  Also as others have pointed out, there are lots of ways to adjust your diet to make it work.  You can eat smaller meals and figure out which foods make you worse.  For me I tend to feel much better later in the day.  I can’t eat anything at all in the am until I have a few cups of water.  At night I can eat a full meal.  I have trouble digesting vegetables and foods high in fiber.   Bland foods like  rice, plain bread, blain chicken, jello I can almost always eat.  When things are really bad that’s all I eat.  If I stick to what works for me, I can usually manage.  Good luck in feeling better!