Reacting to literally anything I ingest

[Jwarrior77]

So when I first got sick I became intolerant to sugar and carbs pretty quickly. I would get increased heart rate and it would also pound sometimes. Fast forward a year later I've become intolerant to almost every food or supplement/med I ingest. Basically my whole body feels like it becomes inflamed. My heart will start pounding to where it beats against my ribcage, this then can spread throughout my entire cardiovascular system. It pounds in my hands, neck, artery in my back, the arteries in my arms, the arteries in my knees, lips, nose, temple veins etc. And these reactions would typically go away but now I'm having pounding 24/7 that doesn't go away with rest anymore. If I continue eating the food I'm reaction to I can get weird nuero issues like confusion, disorientation, and panic. I've tried antihistamines and they don't seem to help. In fact they can actually bring on the pounding. I'm at a total loss at what's causing this. Please if their is anyone out there experiencing similar symptoms please let me know! Sorry for my rant.

 

[Booble]

I have had something kind of similar.
I'd suggest the following:

1) Magnesium. This tends to work wonders for heart palpitations and/or pounding(bounding) heart.
2) Water. Make sure you are drinking plenty of water. I can always tell when I need more water when my heart starts going.
3) Play around with some comfort foods or foods that did not cause any problems for you in the past.
4) This one is going to sound weird but I've found that posture when eating (or when preparing food/cooking before eating) can often set of my heart beat. I'm not really sure the physiology on it but it's definitely a thing for me. It usually happens when I'm crinking my neck downard.
5) Try to get good nights sleep. I know it can be hard when your heart is racing but it does wonders. For me reading fiction before sleeping helps me drift off.

Good luck!

 

[gregh286]

So when I first got sick I became intolerant to sugar and carbs pretty quickly. I would get increased heart rate and it would also pound sometimes. Fast forward a year later I've become intolerant to almost every food or supplement/med I ingest. Basically my whole body feels like it becomes inflamed. My heart will start pounding to where it beats against my ribcage, this then can spread throughout my entire cardiovascular system. It pounds in my hands, neck, artery in my back, the arteries in my arms, the arteries in my knees, lips, nose, temple veins etc. And these reactions would typically go away but now I'm having pounding 24/7 that doesn't go away with rest anymore. If I continue eating the food I'm reaction to I can get weird nuero issues like confusion, disorientation, and panic. I've tried antihistamines and they don't seem to help. In fact they can actually bring on the pounding. I'm at a total loss at what's causing this. Please if their is anyone out there experiencing similar symptoms please let me know! Sorry for my rant.

What happens when you puree food or.take liquid foods...custard etc?
How.long before the reaction

 

[lookinglass]

I was hit with M.E. 12 years ago a few months after a flue shot at age of 70. I could not keep anything down for first few weeks. V and D constant. Palpitations and BP plunges terrified me. Bedridden. POTS , posturial orthostatic tachycardia syndrome , is another symptom which describes what happens when you bend downor even bend just your neck, arrythmia and feeling faint . I was incredibly lucky to meet with a local integrative English GP, this all happened in Spain. He gave me Vit B12 and Magnesium shots daily for a year. My advice. Find a private integrative doctor near you. Skype or Facetime if its too far to travel. And know that your immune system is under attack, in a state of high alert, constantly. Read Dr. Judy Mikovitz who knows that M.E.is a retro virus that either entered your body via a vaccine or possibly airbound. And know that you CAN survive this time and get well again but youneed support of a doctor familiar with this syndrome. I am leading a fairly normal life now. Obviousle my age affects the energy levels as well as M.E. I sleep well with 1mg Lorazepam at night. Curiously, these also deal quickly with any morning nausea. Anxiety levels up and down. Lorazepam deals quickly with those too. I send hugs and sympathies!xx

 

[Dufresne]

I have MCAS, and antihistamines don't really help me either. Dr Neil Nathan suggests people either do better on the drugs or the herbs, but seldom both. As such you might want to try the herbs.

I've seen incredible relief from taking wormwood, perilla leaf, and palmitoylethanolamide (PEA), though the first two stopped working for me years ago. I'm still taking PEA today and its effect seems to be holding.

Wormwood is something Dr Cheney was talking about years ago as a "redox shifter." Dr Nathan, along with others, has stated perilla leaf works for some with MCAS. Dr Mary Ackerley is big on the PEA. These substances never prevented me from getting a stuffy nose, etc if I happened to stray from my diet, but they've helped tremendously with calming my system, and in particular my brain.

I really have no idea how they've worked: as mast cells stabilizers, glial cells toners, anti-retrovirals... I don't know. I entertained the last notion as it offered an explanation as to why two of them completely stopped working for me. However if there was a retrovirus active in us my money would be on an endogenous one that becomes activated under illness/stress.

If it is MCAS you'd probably want to check out the Lyme/mold world. Dr Nathan's book, Toxic, is a good summary of insights in and around this. Also the betterhealthguy has about 100 video interviews with specialists in this domain that's a good, free resource.

Lastly, a strict rotation diet has been an invaluable tool for me over the last 7 years that I've had a big problem with food sensitivity.

 

[Learner1]

@Jwarrior77 I'd highly recommend looking into mast cell diseases.

In addition to the attached, these are helpful websites:

http://mastcellmaster.com/
https://www.mastattack.org/

My doctor did tests for plasma prostaglandin D2 which is a "sendout" through Quest and MUST be kept on ice from draw through shipping and chromagranin A. Many docs will only do tryptase and histamine which are not too useful. About half of his patients have MCAS.

Environmental factors and leaky gut set it off. Mold is a big one too - you might do a Great Plains mycotoxin test.

Ketotifen, cromolyn sodium, quercetin, curcumin, and H2 inhibitors helped me, as well as IVIG and Rituximab. My doctor has a few severe patients on Gleevec.

Best wishes...

 

[kangaSue]

Those can be the symptoms that can go with having a combination of the abdominal vascular compression syndromes (SMA Syndrome, MALS (Median arcuate ligament syndrome), renal Nutcracker Syndrome, May Thurner Syndrome). Those with EDS (Ehlers Danloss Syndrome) or Hypermobility Syndrome tend to feature in the patient group who have a combination of these condition.
Some people have an epigastric 'bruit' sound as an indication of a vascular cause and any doctor can have a listen for this. Otherwise, a mesenteric doppler ultrasound test is a screening measure and a follow up mesenteric CT angiogram (or MRA) can confirm a diagnosis in the majority of cases.
https://pubs.rsna.org/doi/full/10.1148/rg.341125010

 

[Jwarrior77]

What happens when you puree food or.take liquid foods...custard etc?
How.long before the reaction

Even if I eat pureed food I get the reactions. It tends to be pretty immediate mostly right after when I swallow. I definitely think it's some sort of inflammatory reaction getting released. I initially thought it could be MCAS however I don't get rashes or itchiness when it happens. All my vessels will vasodilate, heart pounding, etc. Whatever it is it seems to only effect my cardiovascular system and cognition.

 

[Booble]

Have you tried beta blockers? What do your doctor's think is happening?

 

[Jwarrior77]

I have MCAS, and antihistamines don't really help me either. Dr Neil Nathan suggests people either do better on the drugs or the herbs, but seldom both. As such you might want to try the herbs.

I've seen incredible relief from taking wormwood, perilla leaf, and palmitoylethanolamide (PEA), though the first two stopped working for me years ago. I'm still taking PEA today and its effect seems to be holding.

Wormwood is something Dr Cheney was talking about years ago as a "redox shifter." Dr Nathan, along with others, has stated perilla leaf works for some with MCAS. Dr Mary Ackerley is big on the PEA. These substances never prevented me from getting a stuffy nose, etc if I happened to stray from my diet, but they've helped tremendously with calming my system, and in particular my brain.

I really have no idea how they've worked: as mast cells stabilizers, glial cells toners, anti-retrovirals... I don't know. I entertained the last notion as it offered an explanation as to why two of them completely stopped working for me. However if there was a retrovirus active in us my money would be on an endogenous one that becomes activated under illness/stress.

If it is MCAS you'd probably want to check out the Lyme/mold world. Dr Nathan's book, Toxic, is a good summary of insights in and around this. Also the betterhealthguy has about 100 video interviews with specialists in this domain that's a good, free resource.

Lastly, a strict rotation diet has been an invaluable tool for me over the last 7 years that I've had a big problem with food sensitivity.

Thanks for the advice. Do you get itchiness, flushing, rashes etc. when you have reactions? Those seem to be the classic MCAS reactions. However with me it seems to only effect my cardiovascular system and my cognition. My vessels will vasodilate along with the pounding heart and it happens very fast. It seems like something chemical is getting released in my blood stream I just don't know what exactly. One of my doctors tested my tryptase which came back negative.

 

[Jwarrior77]

Have you tried beta blockers? What do your doctor's think is happening?

I haven't tried beta blockers as my heart can get pretty low and also I have low blood pressure most of the time. They are not exactly sure either. They think it has to do with increased inflammation going on but it doesn't make sense to why exactly.

 

[Jwarrior77]

@Jwarrior77 I'd highly recommend looking into mast cell diseases.

In addition to the attached, these are helpful websites:

http://mastcellmaster.com/
https://www.mastattack.org/

My doctor did tests for plasma prostaglandin D2 which is a "sendout" through Quest and MUST be kept on ice from draw through shipping and chromagranin A. Many docs will only do tryptase and histamine which are not too useful. About half of his patients have MCAS.

Environmental factors and leaky gut set it off. Mold is a big one too - you might do a Great Plains mycotoxin test.

Ketotifen, cromolyn sodium, quercetin, curcumin, and H2 inhibitors helped me, as well as IVIG and Rituximab. My doctor has a few severe patients on Gleevec.

Best wishes...

Thanks for all the information. I'm inclined to think that it could be MCAS as well only it seems that I don't have the classic symptoms of it ( flushing, rashes, itchiness ). Whatever is going on only seems to be affecting my cardiovascular system. The fact that this happens almost immediately after eating and that my vessels vasodilate suggest that it could be histamine or other chemicals that mast cells release. My only question would be why is it only effecting my arteries and vessels which puzzles me. I think mold could also be a trigger so I'll look into the mycotoxin test. Thanks.

 

[Jwarrior77]

Those can be the symptoms that can go with having a combination of the abdominal vascular compression syndromes (SMA Syndrome, MALS (Median arcuate ligament syndrome), renal Nutcracker Syndrome, May Thurner Syndrome). Those with EDS (Ehlers Danloss Syndrome) or Hypermobility Syndrome tend to feature in the patient group who have a combination of these condition.
Some people have an epigastric 'bruit' sound as an indication of a vascular cause and any doctor can have a listen for this. Otherwise, a mesenteric doppler ultrasound test is a screening measure and a follow up mesenteric CT angiogram (or MRA) can confirm a diagnosis in the majority of cases.
https://pubs.rsna.org/doi/full/10.1148/rg.341125010

Thanks for the info. I've heard about those disorders but haven't given it much thought. I'm definitely going to look into them more closely now. Is there any other signs or symptoms to look for?

 

[kangaSue]

Thanks for the info. I've heard about those disorders but haven't given it much thought. I'm definitely going to look into them more closely now. Is there any other signs or symptoms to look for?

I initially read into it that you were getting GI symptoms too for some reason but if you aren't having something like IBS symptoms , it's probably not the vascular issues I suggested.

A second thought on the subject is to look into the possibility that you are fermenting carbs to d-lactate and that can cause mental confusion, and sometimes tachycardia, but I don't know if you can get more widespread vascular problems with it.

 

[mindgonemad]

I've spent 8 years tying figure it out after a large exposure to a powder in the workplace triggered the start of this hell.

First 3 years were following a dieticians advice of low salicylate/amine/gluten/diary diet (I was living on sugar) and getting worse. By the end of the 3 years things became so severe I had to scrap it and remove the carbs as I had developed severe hypoglycaemia and too this day can't handle carbs. I reintroduced potato a couple of months ago and by day 3 or 4 things had become so severe that I had to stop and then wait 2 weeks to get back into ketosis.

The next five+ years have been spent trying to figure all this out for myself (all drs and specialists run their tests and then just shrug). The latest theory (which I think is correct) is that I can't tolerate too many thiols (sulphur) likely due to metabolic disorder and salicylate. What makes it tricky is the salicylate tolerance varies wildly, I can go from drinking gallons of olive oil (slight exaggeration but not much) and tolerating it ok for ages and then suddenly I can't tolerate any. What I think I have discovered is that saturated fat affects my ability to handle the salicylate and that would explain why the symptoms vary as the amount of saturated fat I eat fluctuates.

Mind you, a low thiol/carb/saturated fat diet doesn't leave much to eat especially when the salicylate issue rears its head.

Hope this helps.

 

[kisekishiawase]

Those can be the symptoms that can go with having a combination of the abdominal vascular compression syndromes (SMA Syndrome, MALS (Median arcuate ligament syndrome), renal Nutcracker Syndrome, May Thurner Syndrome). Those with EDS (Ehlers Danloss Syndrome) or Hypermobility Syndrome tend to feature in the patient group who have a combination of these condition.
Some people have an epigastric 'bruit' sound as an indication of a vascular cause and any doctor can have a listen for this. Otherwise, a mesenteric doppler ultrasound test is a screening measure and a follow up mesenteric CT angiogram (or MRA) can confirm a diagnosis in the majority of cases.
https://pubs.rsna.org/doi/full/10.1148/rg.341125010

isnt that more of a abdominal issue instead of heart? i also intolerant to many foods(heart pounding) but theres only a few food that i can eat.

but my symptoms appear around 20-50 minutes after eating.

@Jwarrior77 yours start immediately after ingesting food? thats odd because theres should be a process

 

[Learner1]

Thanks for the info. I've heard about those disorders but haven't given it much thought. I'm definitely going to look into them more closely now. Is there any other signs or symptoms to look for?

https://www.mastattack.org/
https://www.mastcellmaster.com/

 

[gregh286]

I've spent 8 years tying figure it out after a large exposure to a powder in the workplace triggered the start of this hell.

First 3 years were following a dieticians advice of low salicylate/amine/gluten/diary diet (I was living on sugar) and getting worse. By the end of the 3 years things became so severe I had to scrap it and remove the carbs as I had developed severe hypoglycaemia and too this day can't handle carbs. I reintroduced potato a couple of months ago and by day 3 or 4 things had become so severe that I had to stop and then wait 2 weeks to get back into ketosis.

The next five+ years have been spent trying to figure all this out for myself (all drs and specialists run their tests and then just shrug). The latest theory (which I think is correct) is that I can't tolerate too many thiols (sulphur) likely due to metabolic disorder and salicylate. What makes it tricky is the salicylate tolerance varies wildly, I can go from drinking gallons of olive oil (slight exaggeration but not much) and tolerating it ok for ages and then suddenly I can't tolerate any. What I think I have discovered is that saturated fat affects my ability to handle the salicylate and that would explain why the symptoms vary as the amount of saturated fat I eat fluctuates.

Mind you, a low thiol/carb/saturated fat diet doesn't leave much to eat especially when the salicylate issue rears its head.

Hope this helps.

Used to get this often. Crazy racing heart etc. Angioedema in face....anxiety attack all that palava.
Angioedema would come 8 or 9 hours later so suggested large colon. Racing heart within 30 mins normally. The higher the Gi the faster the racing come. Meat and fat slow to move down.

I use immodium to slow down transit and decrease colon 'leakability'. Works very efficiently.

Check out bradykinin as well.
https://angioedemanews.com/2018/08/...s-contributing-factor-nonallergic-angioedema/

 

[Learner1]

@gregh286 you might look into the drugs for mast cell diseases, in addition to staying away from foods that set you off. Many of us have gotten a lot of help from drugs like cromlyn sodium, ketotifen, H2 antihistamines like pepsid or zantac, benadryl, monoleukast, and stronger meds like imatinib. And supplements like quercetin, Neuroprotek, and curcumin. And the other substances in Afrin's list.

You might also want to familiarize yourself with the 2 websites I posted above which have a lot of good info.

Another angle would be to do a stool test, like Viome that could point you toward foods to avoid (likely you already know about these...), Super foods to focus on, and a customized set of digestive supplement recommendations. Or a fecal transplant.
Or other stool tests that can identify parasites, and other bad actors.

 

[kangaSue]

isnt that more of a abdominal issue instead of heart? i also intolerant to many foods(heart pounding) but theres only a few food that i can eat.

but my symptoms appear around 20-50 minutes after eating.

The normal metabolic response to eating is to have a 25% or more increase in blood flow to the intestines (postprandial hyperemia) for the demands of the digestion process but either an inapropriate vasodilation response in the abdomen, or a vascular impediment to the return blood flow easily getting back into circulation, can affect your overall circulating blood volume (via pooling in the lower extremities) and make the heart beat faster in an attempt to move things along.