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lieze

Eating food problems

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Along with my POTS I have issues with food that I do not understand.

It started soon after my POTS that I would get symptoms when I eat. It made me feel I was reacting to my food like allergy. I am aware that MCAD can occur with POTS but not sure if that is it?

I have limited my diet to those things that don’t cause symptoms. For a while I could find foods that I could eat and just feel normal after. Then over time that seemed to change and I would feel a variety of things after I ate that were both uncomfortable and scared me.

I used Benadryl ( a drop ) for a while and that seemed to work but I am not sure if it worked because it just helped me relax.

I have “reacted” to a couple foods here lately that I was relying on one being my Gatorade which provided easy calories.

I have been trying for a month now to add foods and I have failed every single time but the response to all has been about the same. I go tachy which scares me makes me anxious. From that I can get the tingles on my face or other places. Heart rate usually does not go above 120. Stays there maybe 5-10 minutes then comes down. After it comes down I get really sleepy. 

I watch my pulse ox and it stays good the entire time today it stayed at 99 through the entire thing til the end when I got sleepy it dipped down to 95 but maybe I was breathing more shallow by then.

I am not sure if this is just an anxiety response to trying new things. That I am fearful ( I Am )

I wish I could get help because I feel like I am starving even though I’ve been up every hour since 2 am eating trying to get calories in.

The tachycardia only seems to happen when I try something new although when I kept trying the Gatorade it happened with that and also I reacted to my egg and baby Lima beans too this week. 

Any help would be appreciated. 

I am not on any meds sure wish I tolerated them it would be great to treat my anxiety so that could be ruled out. 

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I've been having food intollerance-like issues around the same time the POTS symptoms started. I've been experimenting with food, and it seems like certain common-triggering foods trigger it for me. I'm still at the stage where I'm doing a total elimination and then reintroducing things, but I've noticed when I cut out dairy, gluten, and sugar I feel a lot better without brain fog, acid reflux, or palpitations.

@liezeGatorade has sugar in it, and also eggs is another common food that causes intollerance. What I did is look at various food lists that are considered low fod-map and Mediterranean diets. The best full meal I've had without symptoms is brown rice or quinoa, a vegetable, and fruit, and a fatty fish like salmon. I also like making salads and soups because they have safer ingredients and are filling. Perhaps reintroducing a new vegetable may work better - both for less likely to cause issues, and to reduce the fear since it's considered more safe. Drinking more water may help with the hungry feeling, but try to get enough healthy calories (not from Gatorade). Let me know if you want more info on how I stay full!

 

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This is crazy but I feel so much better since I eliminated the Gatorade. I was couch bound all summer. Could not get up without my blood pressure skyrocketing. My anxiety was also off the hook. 

I can get up now and do a few tasks and tolerate it.

I feel a nutritional deficit though even though I eat small amounts every hour.  This makes me worry gives me anxiety. If I could add some foods with comfort and gain a few pounds I think I would feel better than I have in a while. 

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The foods I’ve tried that haven’t gone well were chicken, milk, pork, pear, and same just happened with my kamut. 

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Also related to the way I generally feel I am not sure if I am going through sugar withdrawal. 

That doesn’t relate to the reactions I get with the foods as much as just my general overall feeling. 

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2 hours ago, lieze said:
2 hours ago, ScottS said:

I think it is probably a good idea to back off on the Gatorade - It's just sugar water combined with weird fruit flavor combinations. Warm broth - for me - is a better alternative. Tea (caffeinated if you can tolerate it or your favorite herbal) with a teaspoon of your choice of sweetener is another. You are correct, of course, to stay hydrated.

I

 I couldn't agree more.  Gatorade is junk with corn syrup and artificial colors and it doesn't even contain enough salt to meet the recommended daily salt intake.  Broth has been a lifesaver for me.  There are tests you can havefor lactose intolerance, food allergies, gastroparesis.  But I also think eating increases symptoms in many dysautnomia patients.   Most of us just eat and live with the increased symptoms.  We all tweak a few things here and there - some remove gluten and lactose, some are vegetarian, some eat smaller meals more frequently.  But a large unusual adjustment - like removing a lot of foods from your diet and risking not getting enough nutrition - is probably best done under a doctor's supervision.

 

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@lieze - have you considered consulting a nutritionist? I made an appointment with the nutritionist at our local hospital and she was able to create a personalized food plan for me ( including GI issues, allergies, intolerances etc ) that has truly helped me a lot. Especially if you feel you are underweight or malnourished it could be a great resource for you.

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Pistol I need to do everything I can to get a handle on this and just not stop until I see improvement. 

Maybe I will get some hints what direction to go after my appt on Friday. 

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I have the exact same reaction after eating. I suggest (with approval from your doctor) antihistamines. Taking antihistamines before eating seems to prevent the tachycardia, for me. 

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I have this too and since >15 years ago no one can tell why :(??

 

doctor here say its all in my head but it isnt. I have ecg handheld monitor and it shows clear difference.

 

What symptoms you get from food though? I got heart palpitation issue really bad. But neurological too like adrenaline rush or something i feel jittery and sometimes stomach issues, sometimes sleepy. Pots symptoms. 

 

I experiment eating MSG 1/4 half a spoon yesterday and i get the attack too. And from sweet food, fatty food, cake bread, sweet potatoes, beans, etc.

 

I dont get bad attack only from boiled vegetable so thats what i eat almost everyday but i hate it.

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Kisekis mine might be neurological also not sure. I get these sensations as it starts like can be a dropping sensation or flushing sensation internal vibration, speeding up of heart rate, anxiousness, sometimes I will feel it hit my chest but whether it actually causes some shortness of breath or makes me feel like I need to catch my breath that can happen and pass or that can happen and I can get some chest tightness.  I can get some lightheaded dizziness vertigo fear etc. 

When I went over the symptoms I experience most with an allergist they said that did not sound like a typical allergy response. However it still scares me. 

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10 minutes ago, lieze said:

Kisekis mine might be neurological also not sure. I get these sensations as it starts like can be a dropping sensation or flushing sensation internal vibration, speeding up of heart rate, anxiousness, sometimes I will feel it hit my chest but whether it actually causes some shortness of breath or makes me feel like I need to catch my breath that can happen and pass or that can happen and I can get some chest tightness.  I can get some lightheaded dizziness vertigo fear etc. 

When I went over the symptoms I experience most with an allergist they said that did not sound like a typical allergy response. However it still scares me. 

I agree what confused me is it doesnt seem like typical allergy but i feel poisoned. I can clearly tell my body is acting up.

 

How long it usually happen after exposure to food? And how long it last?

 

Anyway since i have autoimmune and join the autoimmune community. People who got AI also got symptoms from eating some food. So i think it could be connected. Or maybe the hypersensitive nervous system. 

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If it is triggered by food and leads to symptoms that are not typical for an allergic response, MCAS does seem like something to explore. I have MCAS and am intolerant of many foods. Oral cromolyn (Gastrocrom) has helped this and other symptoms.

It is also possible the issue is due to something in the food, but in a non immune way. I think some people can have trouble with amines in food, sulfur, salicylates, etc and all of these could cause non allergic responses to food. Maybe there is a pattern in your problem foods?

 

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@kisekis - based on where you live: do you eat a lot of fish? Depending where the fish we eat comes from it can be filled with chemicals, heavy metals etc that can trigger allergies. 

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5 hours ago, Pistol said:

@kisekis - based on where you live: do you eat a lot of fish? Depending where the fish we eat comes from it can be filled with chemicals, heavy metals etc that can trigger allergies. 

No actually i dont really like fish. I like pastry, pasta, ice cream, etc. I used to eat a lot of them. But i avoid it when i realized it cause issue(sometimes i still cheat though but before i tested positive for autoimmune)

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6 hours ago, POTSius said:

If it is triggered by food and leads to symptoms that are not typical for an allergic response, MCAS does seem like something to explore. I have MCAS and am intolerant of many foods. Oral cromolyn (Gastrocrom) has helped this and other symptoms.

It is also possible the issue is due to something in the food, but in a non immune way. I think some people can have trouble with amines in food, sulfur, salicylates, etc and all of these could cause non allergic responses to food. Maybe there is a pattern in your problem foods?

 

But i thought mcas symptoms is similiar to allergic? Also i dont know how to check for it.

 

Yes i actually read about amine. I still try to figure out how to check for it.(try to eat it one by one and see which cause issue)i only check for MSG which i got bad reaction after i ingest it.(maybe due to glutamate or other thing?) Also got reaction from sugar/high carb, fatty food.

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20 hours ago, lieze said:

Kisekis mine might be neurological also not sure. I get these sensations as it starts like can be a dropping sensation or flushing sensation internal vibration, speeding up of heart rate, anxiousness, sometimes I will feel it hit my chest but whether it actually causes some shortness of breath or makes me feel like I need to catch my breath that can happen and pass or that can happen and I can get some chest tightness.  I can get some lightheaded dizziness vertigo fear etc. 

When I went over the symptoms I experience most with an allergist they said that did not sound like a typical allergy response. However it still scares me. 

What kind of dropping sensation - your entire body or just your heart or stomach?

These are my symptoms that occur about 1-2 hours after eating the food - usually after something heavy and lasts a few hours. Does it sound familiar: heart rate spike (my heart rate monitor shows me as "stressed". This happens with any meal on days the POTS is bad though), vibration inside chest near heart, chest tightness, overall feeling anxious/panicked, feeling out of it/hazy, brain fog, feeling tired like heart with give out if I exert myself too much, heart pounding, heartbeat going faster as I change positions, acid reflux, feeling bloated.

I'm not sure why, but so far I think it could be from one of these: inflammation, hashimotos, food intollerance, GERD/acid reflux, weak heart needing more energy to process the food, poor sleep leading to more stress on body needing to digest food, poor breathing habits, poor chewing/eating too fast, gas pressing on vagus nerve.

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17 hours ago, kisekis said:

But i thought mcas symptoms is similiar to allergic? Also i dont know how to check for it.

 

Yes i actually read about amine. I still try to figure out how to check for it.(try to eat it one by one and see which cause issue)i only check for MSG which i got bad reaction after i ingest it.(maybe due to glutamate or other thing?) Also got reaction from sugar/high carb, fatty food.

MCAS symptoms can be similar to allergies. My point was that if you (or the original poster) were having odd symptoms caused by food beyond what normal allergies would entail I think that could be a point in favor of MCAS.

To diagnose MCAS, you really need an expert's opinion as they have to take into account symptoms, symptom history, test results, and the overall "picture" of the patient. 

There is a lot of info online, which can be helpful although it is of varying quality

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On 12/14/2019 at 11:17 AM, lieze said:

Along with my POTS I have issues with food that I do not understand.

It started soon after my POTS that I would get symptoms when I eat. It made me feel I was reacting to my food like allergy. I am aware that MCAD can occur with POTS but not sure if that is it?

I have limited my diet to those things that don’t cause symptoms. For a while I could find foods that I could eat and just feel normal after. Then over time that seemed to change and I would feel a variety of things after I ate that were both uncomfortable and scared me.

I used Benadryl ( a drop ) for a while and that seemed to work but I am not sure if it worked because it just helped me relax.

I have “reacted” to a couple foods here lately that I was relying on one being my Gatorade which provided easy calories.

I have been trying for a month now to add foods and I have failed every single time but the response to all has been about the same. I go tachy which scares me makes me anxious. From that I can get the tingles on my face or other places. Heart rate usually does not go above 120. Stays there maybe 5-10 minutes then comes down. After it comes down I get really sleepy. 

I watch my pulse ox and it stays good the entire time today it stayed at 99 through the entire thing til the end when I got sleepy it dipped down to 95 but maybe I was breathing more shallow by then.

I am not sure if this is just an anxiety response to trying new things. That I am fearful ( I Am )

I wish I could get help because I feel like I am starving even though I’ve been up every hour since 2 am eating trying to get calories in.

The tachycardia only seems to happen when I try something new although when I kept trying the Gatorade it happened with that and also I reacted to my egg and baby Lima beans too this week. 

Any help would be appreciated. 

I am not on any meds sure wish I tolerated them it would be great to treat my anxiety so that could be ruled out. 

I have been having similar things happen after eating and drinking certain things since I developed IST (and possibly POTS).  I can have horrible pounding tachycardia while just sitting there after eating (110 - 140 bpm), and sometimes a tingling feeling in my chest, a feeling like there is a heavy weight or pressure on my chest, and shortness of breath.  The things I can no longer tolerate mostly seem to be fermented - vinegar, soy sauce, wine - although I have occasionally noticed it when I haven't had those things as well.  At first I chalked it up to my heart being irritable after my ablation but now I'm looking into a possible localized histamine or tyramine sensitivity.

In your case, the Gatorade is pretty heavy in the sugar department - which I think is known to cause a little bit of a fast heart rate even in normal people too - maybe it was the sugar for this particular item?  Or your blood pressure dropping after eating the other foods, triggering tachycardia?  This is normal in healthy people as well I think, just to a much lesser extent.  But it sounds like you aren't eating very big meals (my assumption here), so maybe this isn't the case...

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I seem to always react to something no matter what I eat. I think it's more of a physical reaction rather than allergic. Some times immediately after eating I get tachycardia. Other times it's this horrible anxiety/impending doom feeling. I also get the internal vibration and a "dropping" sort of sensation. If I do eat something I'm allergic to my body in general just starts to freak out. I've started avoiding Gluten and dairy and limiting my sugar intake and that has already helped me a lot. I've also been taking a digestive enzyme which seems to be helping some of the symptoms. Hopefully these symptoms will all resolve for us soon.

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Has anyone ever asked this to doctor? Is this dysautonomia issue or mcas or vagus nerve or digestive?

 

It seems like people with pots/cfs often experience this?

Im puzzled.

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@kisekis in response to your question :

My gastroinerologist was the first doc to propose Dysautonomia as the source or result of my GI and other issues. I didn’t/don’t have MCAS. my food sensitivities are only very low. My symptoms don’t change with diet. While there are foods that can trigger worse symptoms (really spicy, too much sugar and moldy cheeses), there is no food combination that makes my GI behave normally. I took notes for years and showed them to my GI guy. My endoscopy/colonoscopy was fine. he ruled out several other things, and Dysautonomia was one of the remaining options. He was the one who requested the sweat gland tests and TTT tests, which came back positive.

He says that a lot of people have autonomic dysfunction that effects their gut. He Also said that GI problems may be responsible for some cases of autonomic dysfunction that don’t have known causes. he and other doctors at Johns Hopkins have preliminarily results that say something like 50% of their Dysautonomia patients have significantly reduced symptoms if they can treat the GI symptoms. He admitted that the sample size is too small to say anything conclusively. He also said that most of the patients in this group come into their practice with GI as their main complaint. He wasn’t trying to oversell their hypothesis.

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2 hours ago, Random-Symptom Man said:

@kisekis in response to your question :

My gastroinerologist was the first doc to propose Dysautonomia as the source or result of my GI and other issues. I didn’t/don’t have MCAS. my food sensitivities are only very low. My symptoms don’t change with diet. While there are foods that can trigger worse symptoms (really spicy, too much sugar and moldy cheeses), there is no food combination that makes my GI behave normally. I took notes for years and showed them to my GI guy. My endoscopy/colonoscopy was fine. he ruled out several other things, and Dysautonomia was one of the remaining options. He was the one who requested the sweat gland tests and TTT tests, which came back positive.

He says that a lot of people have autonomic dysfunction that effects their gut. He Also said that GI problems may be responsible for some cases of autonomic dysfunction that don’t have known causes. he and other doctors at Johns Hopkins have preliminarily results that say something like 50% of their Dysautonomia patients have significantly reduced symptoms if they can treat the GI symptoms. He admitted that the sample size is too small to say anything conclusively. He also said that most of the patients in this group come into their practice with GI as their main complaint. He wasn’t trying to oversell their hypothesis.

I see. What does it mean by "treating gi symptoms?" As in drugs, diets?

I have gi symptoms(and bad diet)since a child&before i got sick.

Its hard figuring out what exactly is the problem. And its more problematic if its from multiple causes.

Also some food do have stimulant chemicals in it. To me theres food which cause small/little issue but many food cause severe issue.

I have GI issue, autonomic issue, sensitivity/immunity issue. So i cant figure out which one cause it.

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