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Why do I feel so weird when I eat?

Discussion in 'Hypersensitivity and Intolerance' started by Snookum96, Aug 11, 2015.

  1. Snookum96

    Snookum96 Senior Member

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    Lately the feeling of being drugged when I eat has gotten worse. The intensity of it varies but it's always there.

    I have tried cutting certain foods out but it seems that almost everything I ingest causes this. For several days last week all I could tolerate was crackers and unsweetened applesauce. This even happens with salad.

    Eating has been hard for me for quite a while with trouble swallowing, chewing and just generally finding it exhausting. I'm not well enough to cook for myself but I manage a pretty healthy diet anyways.

    This is one of my worst symptoms. When it's at its worst immediately upon eating I start having trouble breathing and feel like I am going to fall into a coma. Sensory overload gets really bad and I have to go to bed. Sometimes I have to crawl up the stairs to get there.

    If it's a food intolerance then part of why I can't figure it out is that one day a particular food won't bother me much, and a few days later the exact same meal puts me in bed for a few hours feeling like I'm going to die.

    Any ideas?
     
  2. drob31

    drob31 Senior Member

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    I wonder if some of the symptoms are related to dysglycemia. That is unregulated blood sugar levels that stay lower than they should be (hypoglycemic). Often HPA-axis dysregulation causes dysglycemia. I'm betting it's usually related to low cortisol.
     
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  3. Snookum96

    Snookum96 Senior Member

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    @drob31
    I have wondered about cortisol, I get light headed a lot too. Next time I see my doc I want him to order the 24 hr cortisol test.
     
  4. drob31

    drob31 Senior Member

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    Also keep in mind, being "in range" isn't always normal. If you aren't mid to high range, you could be low, or even mid range could be "low" according to your needs.
     
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  5. lnester7

    lnester7 Seven

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    @Snookum96 I have the same issue. With time I think CFS we develop food allergies. My ellimination diet did not work because I was allergic to the seasoning I was using so it looked like I was allergic to everything (but I pur garlic or celery on everything) So the food allergy test helped. Unfortunately I develop new one and I still struggle when I eat.

    Try to not eat. or eat one thing w salt (like a potato) and see if the feeling goes away. If it does then get food allergy test done.

    They put me on gastrocrom before meal something to block mast cell (food allergy) I have other issues w it but might help somebody else.
     
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  6. Snookum96

    Snookum96 Senior Member

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    It does seem like it happens with everything. I guess it's time for allergy tests too.

    You mentioned mast cells, does this have something to do with MCAS for you then?
     
  7. ahmo

    ahmo Senior Member

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    @Gingergrrl recently went through a terrible period of reactions to food. She has a known and serious case of Mastocytosis (sorry if I've not got the exact label correct, there are several mast cell syndrome labels). You might look among the papers available at mastcellmaster.com, see if your symptoms are addressed there.

    Regardless, you might benefit from coffee enemas to clear your liver. Or some other type of liver clearing/support. I've written on coffee enemas, see my signature. The best coffee available for these enemas is from a Canadian company.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    @ahmo I actually do not have mastocytosis which is when you have too many mast cells and is a form of cancer.

    I have MCAS (mast cell activation syndrome) in which I have a normal number of mast cells but they are behaving badly (and symptoms between the two diagnoses can be the same) but are confirmed by different tests.

    I went through hell with it in April and May and it started out of the blue although we think toxic mold was the final trigger to my immune system and that I had mild symptoms for years. My histamine test were three times the normal limit back in Dec pre symptoms.

    I was finally hospitalized in May for a week and my Dr consulted with Dr Afrin and IV Benadryl got it under control so I could eat a few foods without stage two anaphylaxis. Then I switched to Benadryl shots and now just oral meds (6-7 meds) about 30-40 min before I eat but I can now eat about 30-35 foods as long as they are low histamine and completely fresh or frozen.

    Hoping this helps!
     
  9. ahmo

    ahmo Senior Member

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  10. Snookum96

    Snookum96 Senior Member

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    Thank you @Gingergrrl , do you have any resources you can recommend for me to read before I see my doctor?

    I'm going to look through mastcellmaster.com as ahmo recommended but would like to read some less technical ones as well since my brain doesn't always work too well.
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    Yes, I would read Lisa Klimas blog called "Mast Attack" which is incredibly informative and has many sections which should cover all your questions. You can also read the stuff from the mastocytosis society. Which doc will you be seeing? Are you in the US?
     
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  12. panckage

    panckage Senior Member

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    @Snookum96 I get similar symptoms. Do you get IBS symptoms as well? One I figured out I had gluten intolerance 2.5 years ago. It turns out it is pretty complex as since I have learned I am intolerant to gluten, soy, pepper, oregano, garlic, onion, rosemary, most likely all spices :p, brocoli and probably other things too LOL. I have dairy intolerance for a week or 2 a year but otherwise I can drink gallons no problem :p. I'm getting pretty close to having a symptom free diet, but it is very slow going...

    Anyway before I knew about my intolerances the effects were very varied and I couldn't bad cases to anything specific. Perhaps you may have multiple food intolerance too?
     
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  13. Snookum96

    Snookum96 Senior Member

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    I'm in Ontario, Canada. I see my GP (who is nice but clueless) as well as Dr. Byron Hyde. Dr. Hyde will order them but he's out of the country until October so I won't see him until then. I'm assuming he's familiar with it because he deals with this stuff a lot but I like to be prepared.

    I'm considering going to the U.S. But it would have be be NE and I'm not sure if I could even handle travelling that far.
     
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  14. Snookum96

    Snookum96 Senior Member

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    Mine is variable too, much worse at some times than others. I also have IBS symptoms, I have pretty much my whole life.
    So frustrating!
     
  15. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hello there, here are some answers and areas to look at that might help.


    1) Autonomic Dysfunction. If you haven't been tested, try and see an autonomic nervous system specialist in an allied clinic that has lots of specialist equipment and technicians to help you out. Failing that, try an get a cardiologist or neurologist to order you a TILT TABLE TEST.

    I say this because feeling weird or drunk (many with ME say this), including shortness of breath and vertigo/dizzyness/weakness is actually a sign of Autonomic Nevous System Dysfunction (including when eating), which is basically part of having ME (not CFS).
    NB: If you can prove you have Dysautonomia then you don't have CFS, because you then have an explained reason for 'Chronic Fatigue'. (CFS diagnostic criteria is unexplained Chronic Fatigue). The advantage of this, is you would then have a proven neurological disorder, unlike CFS, or CFS/ME. If you managed to go to see a specialist they could test you with a little blood test (they throw the blood away after, to see what your BP does when standing up, this might show you have vaso-vagal-syncope. If you've got ME or POTS, then your vagus nerve is going to be sending odd messages to your heart and circulation, especially when you eat, stand up, walk, go to the toilet, get stressed, have a bath etc. Vagus nerve dysfunction, is one of the main reasons PWME get such erratic symptoms to do with circulation and then this can fire off sympathetic nerves to create anxiety/panic/chest pain the works. It can also make you collapse in bed when peeing, and get horrible vertigo yes I've done that many a time.(I've got POTS and ME).

    Sensory dysfunction, such as odd feelings in your hands (such as holding knife an fork) or stomach pains could easily be due to lack of blood flow in your brain - known to occur in POTS especially and POTS is found a lot in people misdiagnosed with CFS. You might also be getting some seizure like episodes, possibly caused by some hypoperfusion in your brain. Proving this is hard with conventional tests, such as an EEG for 'true' epilepsy. Thus you might want to see if you can source a QEEG brain map. If you have severe ME, I am reasonably sure this will be abnormal and show your brain is half asleep when awake (Delta waves) and has some erratic voltage changes associated to partial seizures.


    2) If you think your symptoms could be allergies (allergies play havoc with blood flow in Dysautonomia). Try and source an IgE blood test. Better than that, try and get multiple results, over time (weeks or months). Then factor in how high the result is vs normal.

    You say
    , that could still be allergies. People can be sensitive to lettuce, cucumber, tomatoes, carrots anything people tend to munch as snacks.
    Also raw vs cooked can make a difference. E.g. some people report a 'burning mouth' eating raw carrots, but cooked they are fine.

    If you think you are simply food intolerant get an IgG blood test. To be honest, I'm not a fan of these, although they are sold all over the internet to unsuspecting customers. Note, that IgG reactions tend to go down the route of headaches and IBS, and aren't considered dangerous like 'true' allergic reactions. It is interesting, however, to see if you're still launching an immune response against certain foods.

    3) See if you're dropping your blood pressure. Short of actually fainting (syncope) or nearly fainting (pre-syncope) it might be somewhat impractical for you personally to do this. One way is to get a good quality blood pressure monitor (not one worn on the wrist), and leave it in the dining room/kitchen and if you feel a bit 'odd' during a meal time, get someone to pop the cuff on your arm and take a reading. Note that anxiety/stress puts your blood pressure up, so if it's 'normal' when you take it, but you were anxious, this may not be a true reflection on the reading before you took it. Post prandial hypotension, is another feature of autonomic dysfunction, it's possible (not necessarily probable) this may be happening to you, and so you feel 'drunk' or weak after a meal, especially a larger meal (such as an evening meal vs breakfast). A simple way to reduce this happening is to eat smaller portions, but eating more frequently (what POTS patients are told to do, for example).

    Depending on any test results you have, you can try some countermeasures. I rarely can sit upright to eat due to 'blood pooling', so eat laying on my side (if you eat laying flat, you'll mess up your digestion and might also get a bit out of breath, depending on your level of health and other conditions you have). So see if you feel less weak, sitting on the floor (as an experiment), or sitting on a chair that is much lower to the ground (computer chair on lowest height setting). The logic here, is trying to get your heart as close to your head (brain) as possible, to see if it makes any difference to your weakness symptoms when eating,


    So to recap:

    * See if you can contact a neurologist/cardiologist to have a TILT test to rule in/out Autonomic Dysfunction, aka Dysautonomia. If you do have this problem, most of your 'weird' sensory and cardiac symptoms can be explained by changes in circulation in your brain/body become dysfunctional due to your CNS being challenged (such as when eating, going to the toilet, bending down, getting stressed getting an infection/allergies, exertion, standing up etc). NB: This is why CBT/GE for ME fails, because exercise and upright posture will exacerbate true chronic autonomic dysfunction, it will however help you if you're simply de conditioned.

    *See if you can buy online some IgE blood test kits if your doctor won't help (you'll have to source your own phlebotomist and/or buy a finger prick test, when you do the test yourself and send it off in the post in a tiny little vial. (Don't do a blood 'spot' test, I mean an actual mini tube of blood that is accurate and reliable).

    Personally, if you have a doctor, I'd tell them first and ask people on the internet like us last. Still, it was worth it as now you have some ideas.
     
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  16. Rlman

    Rlman Senior Member

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    you might want to look into histamine intolerance. It can cause such symptoms I think and may explain why you don't get the same reaction every time bc it needs to build up. The root cause though is often gut issues I think. It can also cause POTS symptoms. Not sure if this is your issue but may be worth checking out.
     
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  17. Snookum96

    Snookum96 Senior Member

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    @Research 1st
    Wow! Thank you for all the info!
    I do have a referral into a cardiologist for a tilt table test since I have a lot of difficulty standing and sitting upright. I have looked into the IgE tests but read that they're not very reliable. Might try it anways it's worth a shot.

    I did speak to my doctor and she said "wow, that's strange"
     
  18. Snookum96

    Snookum96 Senior Member

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    I was wondering why if it's a food intolerance it wouldn't be the same every time. I'll look into histamine as well. Thanks!
     
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  19. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Snookum
    You're not alone. I have this too.
    I feel hungry for I don't know what. Whatever I eat, it doesn't satisfy.
    I can feel hungry for something when I feel full right after eating. What the heck is that anyway.
    It doesn't seem to relate to histamine because I medicate for that.

    But if I recall correctly when I trialled the Miyarisan probiotic I experienced not feeling hungry.
    But I can only tolerate a 1/4 tablet and I still get a headache. I plan to continue trying the Miyarisan but there are others things to consider at the moment.

    But I sympathise. It is a really annoying symptom whatever it is.
     
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  20. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    RE: Constant hunger when all standard tests are normal and no other disease is present (e.g. High Insulin).

    There are a few threads on this, I've seen patients talk of this before. Personally, I believe it's pathological to ME and neuro hormonal and is caused by the CNS, rather than something easily 'fixed', with a simple test.

    But we can still have a think what might be going on:

    *The hunger feeling could be your autonomic nervous system, as it controls hunger. Also note, that if you get dehydrated (some PWME forget to drink or can't drink enough due to weakness or swallowing difficulty) your brain can confuse dehydration for hunger sensation and so you eat, instead of re-hydrate.

    *Medications can do this, one medication used in Epilepsy and pain control, is Lyrica (Pregablin), this is taken by some 'CFS' sufferers and is renown in making people eat constantly and gain weight.

    *It might also be some degree of blood sugar shifts,if you have low growth hormone (GH) especially (I'm betting you've not had an GH stimulation test to assess your pituitary gland). NB: This is a test not without unpleasant side effects (in some - 9hr minimum fasting) and needs to be performed with specialist nurses trained in the protocol. You'd likely need an endocrinologist to order it.

    *It might be, (never tested it myself) some odd 'CFS' thing to do with Leptin/Grhelin hormones that are associate to hunger and your brain and stomach talking to each other. I think other peptides can be messed up in CFS, such as VIP.

    *It might be you're getting a chronic hypo after eating between meals. Short of excluding this with proper tests you could see what you nutritional status is (vitamins and minerals) and/or consider taking Chromium supplement to balance blood sugar out. NB: Don't anything that affects your blood sugar without contacting a doctor first if you're Diabetic!

    *It might be associated to immune activation and cytokines, affecting your brain. Perhaps Interferon Gamma (IFN-g) could affect hunger/appetite or metabolism, burning of fat for fuel.

    I wish I knew the answer too!
     
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