posted
I've noticed lately that whenever and whatever I eat makes me feel weird.
My tongue feels numb a few minutes after eating something. The itchy brain sensation increases. And I typically end up in a panic attack by the time I'm done with the meal because of all the weirdness!
i'm actually at the point where I'm scared to eat anything!
What do I do??
Posts: 44 | From Maryland | Registered: Jul 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi Miranda,
This is very common with Lyme &co. A lot of the infections are in the small intestines. When you eat you stir things up/good or bad.
Don't be afraid to eat. Try and eat as healthy as you can.
Take Care,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
same here.....I feel weird a lot..... and it is so hard to put it into words.
I feel a little jittery, but don't know how to explain the rest.
I also have a hard time clearing my throat a lot...... feels like I have super glue in my throat!
And I get this itch in my chin that is under the skin...you know, you can't scratch it.....I don't know what that is about...it drives me crazy.
Posts: 117 | From Winston Salem NC | Registered: Sep 2008
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posted
Yep me too, I eat and within minutes I feel icky and my heart starts to race and palpitate.
I also have the throat issues going on which really concerns me.
Jenny
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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Shosty
Unregistered
posted
You guys should definitely consider food allergies (which can be triggered by antibiotics, changes in gut flora, yeast, leading to leaky gut, or could be immune system reactions to the Lyme itself).
My daughter and I were about to embark on yet another medical wild goose chase when our doctor referred us to GI AND neurology for this.
Luckily, we found an MD (covered by insurance) who treats food allergies, and not just the kind recognized in the mainstream.
You might want to try an elimination diet, meaning, do not eat any gluten/wheat, dairy, citrus, eggs, soy, nuts, tomatoes, whatever else you suspect, for couple of weeks.
Then, reintroduce foods one at a time, every few days. You will easily be able to tell which ones cause reactions. You can restore foods to your diet, that you don't react to.
You might get worse the first day or two.
But then, things can dramatically improve. The results really can be quite amazing, and were for us.
The nice thing is, this doesn't take that long to work. For us, improvement came just a few days into the elimination diet.
As side note, some of the inflammation that was plaguing us and causing symptoms also receded. I would say I got as much relief from changing my diet as from 6 years of antibiotics, honestly.
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Wow that is really interesting. So for the first couple of weeks what can we eat? That sounds really hard but worth it definitely.
I saw a Naturopath (spelling) last year and she did bloodwork and said that I had a very strong sensitivity to gluten. It was really hard to eliminate and I really didn't do a good job doing it completely.
Needless to say I gave up on it too soon and seeing her wasn't covered by insurance so I let it fall by the wayside without giving it a fair shot.
If it can help, I'm there. Do you have any suggestions as to what we can eat?
Thank you, Jenny
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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posted
Yeah, i'm curious as well. It doesn't matter what I eat, I always get the tongue reaction and the worse symptoms.
So, what would I eat while trying to figure this out?
Posts: 44 | From Maryland | Registered: Jul 2008
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Shosty
Unregistered
posted
Rice, rice cereal (brown or white, I eat w/cold applesauce, or put frozen blueberries in,very good), rice pasta, potatoes (good baked in slices w/olive oil, so they brown), most vegetables (not tomatoes, or corn, and I later developed problems w/peas), apples, many fruits (although I found I have trouble w/any fruits w/pits, but that was much later), meat, poultry, fish. Oats can be iffy, but after the first week you could try it in moderation.
Sample day:
rice cereal w/applesauce and cinnamon and pcs. of apple
salad and scallops or chicken w/rice and green beans
rice pasta w/hamburger and broccoli
rice cakes w/tuna and celery, fruit
Use olive oil only, no corn or other oils; no dairy, gluten, corn, soy, citrus, eggs,nuts, tomatoes- hope I am not leaving anything out.
A nutritionist can help with rotation to avoid future allergies, after you are done, but you really don't need much expert help to try this. It will be clear in a few days, if it is helping, and it will be clear in a couple of weeks, when you start reintroducing foods, which ones are problems.
Then again, a nutritionist can be a good support and resource for cooking ideas.
I was very skeptical about this, so it is even more amazing that it helped so much for me and my teenager w/Lyme.
It's hard, but you do get used to it if you have to avoid things. There are good books out there.
I even make my own muffins w/sweet potatoes and alternative flours (in any health food section, can be bean flours, or corn if corn is okay for you). I'm not that great a cook, so if I can cope with this, anyone can!
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posted
I get a wierd feeling whenever I eat nuts, especially almonds. I get dizzy. I always chalked it up to a potasium "rush". I do not have allergies to nuts, according to tests that I have had in the past.
It's hard to add healthy foods into your diet with they make you feel like crap!
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Yes, allergies are huge for lyme patients, especially due to antibiotics but also lyme seems to cause lots of allergies.
Do a google search for rotation diet. A rotation diet can help unmask food allergies and also help you deal with them so that you don't have to give up completely on foods that you are allergic to. Here is a list of benefits. http://www.parentsofallergicchildren.org/rotation.htm
80% of your immune system is in your gut. If you have food allergies and don't deal with them, you are affecting your immune system and we need a good immune system to get rid of these infections.
Not only lyme and abx can damage the gut but parasites can as well. When the gut is damaged, we end up with a leaky gut. This causes large molecules to be released into the body at which time the immune system thinks it is a foreign substance and attacks it.
With a leaky gut, we can end up with an allergy to anything we eat and this is what happens to me. If I eat something very often (which I tend to do), I will become allergic to it. The rotation diet can help with that as can taking things to help heal the gut.
Deal with infections such as parasites, candida etc.. Probiotics are important. Amla plex was recommended by my ND to help heal my gut and glutamine is also used. Butyrate can be helpful as well. It is a long process but very important.
Taking digestive enzymes on an empty stomach can lessen allergic symptoms because it eats debri that can cause allergies. Also, digestive enzymes when eating can help.
One other thing that can cause symptoms after eating (although I doubt it causes problems with the tongue and some of the other things mentioned) is orthostatic hypotension (low blood pressure). Fatigue and other sensations can occur after eating. Especially if eating a big meal. Orthostatic is another common problem that develops with lyme. Very common in chronic fatigue syndrome.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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JillF
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posted
if i'm really hungry, right before i am about to eat (as in the food is in front of me), i will sometimes get really nauseous, jittery, even feel like i am going to pass out
usually i can't eat. i wait and eat 20 min later and i'm fine. if i do force myself to eat when i'm feeling this way, after about 5 min, i'm fine but usually i feel so bad that i can't force myself to eat
doesn't happen near as much as it used to. just really odd
Posts: 1485 | From USA | Registered: Apr 2004
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Shosty
Unregistered
posted
Jill F, that could be low blood sugar.
Hurtingramma, the allergy tests that many doctors use will not pick up the kind of allergy we are discussing, necessarily. There are two kinds of allergies, mediated by two different parts of the immune system. I would pay attention to what your body is telling you. But if it really is a problem, then at some point you truly will be unable to eat the nuts. This happened to me very quickly, and I started vomiting whenever I ate them.
Terry, I have the same problem. If I eat anything a lot, I start reacting. The trouble is, as I'm sure you know very well, is that since the kinds of foods I can safely eat are down to so few, it is almost impossible not to eat those few precious foods too much!
I am in trouble if I ever react to rice cereal or apples, that's all I can say.
On the positive side, with careful rotation and avoidance of eating certain things for two days in a row, I have restored my ability to eat some things, sparingly.
Just so people understand how powerful this can be: I used to eat bread and cheese all the time, and also ate a lot of yogurt. After I stopped eating dairy, I would get sick if I even got a little butter on my skin! At the same time, my burning and tingling sensations, all over, greatly decreased on the elimination diet.
What I am saying is that you can have a number of very strong allergies that you are completely unaware of, that could become very evident when you try to reintroduce foods afer the elimination phase.
Today, I used a strainer for pasta, then absent-mindedly also used it for broccoli. One bite of that broccoli and my face was on fire. And I used to live on bread and pasta!
One other thing for Terry: gastrocrom liquid helped us a lot..it is an anti-inflammatory also used in asthma, good for any inflammation that is caused by allergies...
BTW burning tongue is classic and could be either type of allergy, the IgE or the IgG mediated...in other words, you could at some point have an anaphylactic reaction .
Interestingly, panic and anxiety are also listed as symptoms of allergy, the kind that can cause anaphylaxis. So you might want to see both a mainstream and an alternative allergist, for treatment, and might need an Epi-Pen. I am not a doctor, of course, and could be wrong, but it does sound like you should check this out!
In the meantime, carry some Benadryl with you. Zantac also helps with reactions.
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posted
Eating makes me feel strange too. I suffer from partial seizures and it always seems to happen
while I'm eating or after. I too feel panicky as well. I also always choke on foods now, especially salad.
After taking note of what I was consuming I think it could be chemical MSG related. I had a
bowl stew at a popular restaurant and had the worse partial seizure ever!!
It could be allergy related as well. I did get a seizure from decaf tea as well, after
consuming two glasses. I was told decaf is very bad because of the chemicals used to make it decaf! On a lighter note, I'm doing so much better! I have babs as well and have been on treatment 4
mo. I had lyme for almost 2 years before getting treatment.Every day I tell myself I'm cured (I'm not really!!) I'm just going to keep telling myself!!
-------------------- abbyjo Posts: 255 | From Southern CA. | Registered: Jun 2008
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quote:Originally posted by MirandaVB: I've noticed lately that whenever and whatever I eat makes me feel weird.
My tongue feels numb a few minutes after eating something. The itchy brain sensation increases. And I typically end up in a panic attack by the time I'm done with the meal because of all the weirdness!
i'm actually at the point where I'm scared to eat anything!
posted
Man! I'm so glad that I am not the only one!
I would definitely start with testing for food allergies! I have a few and I do feel a little better if I am off those foods.
I am "learning" to hate food. Or more accurately, hate eating. When I eat as little as a few cashews or 3 rice crackers or something equivalant, I feel stuffed. The feeling a normal person feels when they over eat.
I hate it. I dread eating everyday. I also have nausea, vomiting, stomache pain, loss of appetite, etc, so I don't eat more than about 300 calories a day.
Sorry, I didn't read the above comments, so sorry if there is an overlap.
*Best wishes*
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
I have that too, and yes my nerve pain increases when I eat something I am allergic to...(my list of allergies is about 3 pages...so i don't have much left...). I wonder what's the link between food allergies (related to the stomach) and brain... Also, have anyone of you heard of someone who, after lyme treatment, was not allergic anymore...? Thanks!
Posts: 723 | From Montreal | Registered: Oct 2010
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Back when I was experiencing daily nausea and could hardly eat my doctor gave me some ginger chicory bitters which helped my stomach quite a bit.
posted
So am I the only person who can eat the same meal three times and only get an episode of numb tongue once? I get this sporadically. There doesn't seem to be any common denominator. A lot of foods have been triggering migraines for me lately, but like I said, I can eat a meal and have this happen, then eat the same meal twice that day and nothing will happen. The trigeminal nerve connects the tongue as well as believed to be a major role in Migraines, so I can't believe all these episodes of feeling weird after eating are food allergies.
I second what abbyjo said back in 2008, that even decaf tea can trigger it because of all the chemicals in it. (Not sure if I have seizures or not.) I really don't understand how this works but it's very frustrating becuase it's nearly impossible to figure out exaclty WHAT is causing it, if it doesn't happen reliably! If you have an allergy it should happen whenever you get exposure to the allergen.
(I should also add my tongue and lip tingling is often accompanied by rightsided face and arm numbness, sometimes leg numbness too. I temporariily lose the ability to swallow, as in, I can't initiate that action. There's a chat about all of this going on in a similar forum concerning bartonella here, but I don't know what connection any of it has to eating. This did all get worse when I began bartonella treatment, however.)
Posts: 512 | From USA | Registered: Sep 2010
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posted
I don't know about the tongue, but I used to get this little thing on the back of the roof of my mouth that swelled up sometimes. It felt and looked kind of like a little pimple. There was no rhyme or reason as to why or when.
But I just realized that it hasn't happened for a couple of months. I wonder what this is?
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
I also have this sometimes. I get hot and heart racing and nauseous and abdominal pain after eating.
I am wondering if anyone has this experience: You take one or two bites of food and have a stomachache? I know the food can't get down there that quick.. so how is that possible? It doesn't seem to be one specific food that does this to me.
I have trouble therefore determining if there is an "allergy" or "insensitivity"...
Posts: 341 | From NY/FL | Registered: Apr 2010
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I am wondering if anyone has this experience: You take one or two bites of food and have a stomachache? I know the food can't get down there that quick.. so how is that possible? It doesn't seem to be one specific food that does this to me.
- This happens to me with sugar or white foods... yeast.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I'll put my two cents: maybe we have some undetectable pathogen in our stomach that wakes up as soon as food reaches the stomach...
Posts: 723 | From Montreal | Registered: Oct 2010
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
I did an extensive allergy test - luckily not allergic to much - just cheese, sole, safflower, and dust.
So how come when I eat eggs or some avocado or anything in general, I get a coughing fit for a good 10 min? Like mucusy and clearing my throat.
So weird.. it passes though, so not an allergic reaction like hives, rashes but still I think my body is just hypersensitive now and reacting to a lot.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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quote:Originally posted by renny1985: I also have this sometimes. I get hot and heart racing and nauseous and abdominal pain after eating.
I am wondering if anyone has this experience: You take one or two bites of food and have a stomachache? I know the food can't get down there that quick.. so how is that possible? It doesn't seem to be one specific food that does this to me.
I have trouble therefore determining if there is an "allergy" or "insensitivity"...
This sounds exactly like my sister's response to foods she is allergic to, particularly soy. And if you are allergic to soy, you wouldn't realize it very easily. It is in EVERYTHING! So try eliminating that and see what kind of results you get!
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
Yup--eating problems is what actually sent me to an LLMD by sheer dumb luck. I went in asking to be tested for food allergies, and came out with information on lyme disease.
Anyway, I still did the testing because all last summer and fall I tried to do an elimination diet by a GI's suggestion but on my own to figure out what was causing the problems. I made things worse and had to have hernia surgery.
So I figured test and let someone else figure it out quickly. Good thing I did, because I turned up allergies to dairy, wheat, all glutens, and both egg whites and yolks.
No wonder I couldn't pinpoint it on my own; I am basically allergic to everything that tastes good.
So. long story short, I recommend the allergy testing. At least if your symptoms are related to specific foods you can eliminate them and hopefully find eating to be the happy experience of well-being nature intended. Even if it's not as happy without milk chocolate...
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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posted
Sickntired- any tips on how your sister eliminated soy? Or what words to look for on ingredient lists that mean soy (besides of course "soy, soybean" etc.
SBH93- do you know what allergy testing you had done- was it the typical prick your arm done in a docs office or a more integrative allergy test- do you remember the name at all?
quote:Originally posted by renny1985: Sickntired- any tips on how your sister eliminated soy? Or what words to look for on ingredient lists that mean soy (besides of course "soy, soybean" etc.
SBH93- do you know what allergy testing you had done- was it the typical prick your arm done in a docs office or a more integrative allergy test- do you remember the name at all?
Thanks, Renny
Actually I think it is usually listed as soy, soybean, or soy lecithin. I think they are legally supposed to make it clear when there is soy in something! As far as what to eliminate? HA! I'm not going to sit here and tell you that its easy, quite contrary!! Soy is in gum, candy, salad dressings, almost all prepackaged food, and everything in between. You just have to start looking at labels closely.
If you want me to, I will talk to my sister and get a list of some foods that you can get that are soy free! She was pretty strict with her diet for about 2 or 3 years and now she has basically overcome the allergy. This often happens if people are strict about not eating it, so there is hope I guess.
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
That would be absolutely great... I cant have dairy either so I am not sure how to really do this. Ahhh its overwhelming. If your sister doesnt mind, I would love some help???
If not, I appreciate you just mentioning this to me. Thanks, Renny
Posts: 341 | From NY/FL | Registered: Apr 2010
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Those are all sensetivities, except for shelfish and nuts- those are *true* allergies. I carry an epi-pen for those.
The rest give me varying reactions: the roof of my mouth itches, stomach ache, bloating, pain, runny nose and itchy eyes...found these allergies around the time I was first dx'd with Lyme, interestingy...
Doesn't leave me very many options of what I can eat. Most grains are out, packaged foods are DEFINITELY out as they all contain either corn or soy, and forget about 'allergy' foods as they also all contain SOMETHING I am sensitive to.
I won't even get into all the environmental allergies...
I have tried numerous times to be completely allergen free but I have yet to overcome my 'issues'.
I had 2 different types of skin tests along with the blood tests. My allergist is very thourough.
Long story short...I can sympathize with you. Its hard to find enough to eat, or even want to eat when there are so few options.
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
A true allergy causes a measurable reaction, usually anaphylaxis. A sensitivity is more of a mild reaction, maybe bloating, etc. At least this is how my Dr explained it. Now, they use a number scale according to the blood/skin tests and how much you react, how high your IgE is, etc. Sensitivities CAN become true allergies...or not. Most allergies you have as an adult, though, will not go away.
Again, this is just what my Dr. says and he is not a LLMD...he does not think there is a connection betw. Lyme and food allergies...I disagree...
posted
Just read this and remembered reading this thread last night about the numb tongue. It says that food allergy can cause a tingling mouth...
Symptoms By Mayo Clinic staff
For most people, soy allergy is uncomfortable but not serious. Rarely, an allergic reaction to soy can be frightening and even life-threatening. Signs and symptoms of a food allergy usually develop within a few minutes to an hour after eating soy-containing food.
Soy allergy symptoms can include:
Tingling in the mouth Hives, itching or eczema Swelling of the lips, face, tongue and throat, or other parts of the body Wheezing, runny nose or trouble breathing Abdominal pain, diarrhea, nausea or vomiting Dizziness, lightheadedness or fainting
Posts: 418 | From NJ | Registered: Sep 2007
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posted
As I mentioend befored, my tongue and lip tingling is often accompanied by rightsided face and arm numbness, sometimes leg numbness, and I temporarily lose the ability to swallow, as in, I can't initiate that action. I never get any of these other allergy-type symptoms and my throat, though it feels odd, never swells. It can get pretty severe--a few times I started having convulsions (while conscious)--but I never had any trouble breathing, etc.
I AM getting tested for food allergies but I think my problem might be more related to Migraines or something other neurological phenonmenon. I'm sure others have this problems besides me, somewhere...
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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posted
Well, no food allergies. Not a one. Didn't have any a decade ago and still don't, now. So that's proof that you can have these symptoms and not be allergic to something, though I do recommend getting tested if you have any doubts whatsoever.
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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