Disoriented, And Unable To Walk.

[Dreamtemperature]

My name is Erin. I'm twenty, going to be twenty-one in September. I'm 5"3 and weigh 132ibs. My mother has celiac disease, and I always knew I had it but I just felt sick if I tried to drink alcohol, or eat too much junk food, so I didn't eat out much.

Within the past month I have found it difficult to breathe, sudden of my heart racing non stop. It gets so bad I feel like I might throw up or pass out. I get confused and can't focus well on anything, and feel well and nothing will calm the fast heart beat. I went to the hospital yesterday and have been a few times recently. They said my RHR was 130, blood test were normal,the lowest my heart rate went to was 100. I haven't been able to sleep I have constant insomnia and fatigue. I'm so tired.

I used to go walking every night and sometimes jog. Now I cannot even get up the stairs to my apartment, without having to come in panting and wheezing and having to lay on the bed. I am practically always laying in bed. I never want to go anywhere because I'm scared to have my heart beat as heavy as it gets. It no matter what all the time usually 90+ heart rate even while I'm laying around not doing excessive anything.

I thought possibly I have gotten Canida from have Celiac disease, so I got Actiiva yogurt, and now I cannot even eat it. I feel nausea eating practicully anything. It makes me very sick, I get dizzy my heart races and I feel very sick. I have trouble eating and if I eat too much or drink too much liquid it seems to sit on my stomach very heavy and I get palpitations. I started taking magnesium because my palpitations were so bad when all of this first started they were like 30 times a day, and would happen so intensively. I'm not sure what to do.. My doctor said my heart rate was fast, but no murmur.

I'm just very scared because I never have a normal resting heart rate. I don't think it's been normal for the past two months. I break out in a full body sweat if I even walk outside, and my heat intolerence is VERY high. I try not to eat much of anything (I've eaten miso soup) but I'm scared to eat anything else because my heart racing as much as it is now, if I eat something I don't want to worsen it. What can I eat? I'm starving

I'm scared that this is going to harm my heart before I go back in to the doctors and they figure it out. If anyone has any ideas about it please let me know, any information or any experience of their own I would truly apperciate it more than I can begin to express.

More symptoms I've had are:

Chest pain

Chest tightness

Stabbing feeling in stomach

Sore joints

Headache/Migraine

Tingling all over hands feet and random spots

Severe Nausea

Flaking nails

Cold sweat on hands and feet

heat intolerant

ringing in ears

insomnia

fatigue

slowed walking/moving

arms feel heavy/dead/tired

inability to conprehend

pressure behind left eye

[kareng]

Oh Honey! I had this, too. Found out I was extremely anemic ( iron deficient) . You do not make the blood cells that carry oxygen properly. This makes your heart beat extra to get Oxygen to your body. It means you breathe hard to try to suck up O2 . When you have Celiac, your intestines can't absorb nutrients as well as a healthy body. I took massive doses of iron , vit c, B 12 to get my blood healthy again. Get your blood tested for vit d, b12 & iron. The other problem could be thyroid, so get that checked with blood tests.

[GlutenFreeManna]

Welcome Erin! A few things about your post confused me. When you say you had a negative blood test, did they test you for celiac? With your mother having it, it's very likely you have it too. You need to follow up with a heart doctor to rule out any heart condition, but I will tell you that I had some similar symptoms. Mine included chest pain and difficulty breathing rather than just a racing heart beat. I was only 26 when it started and it was scary. Your racing heart beat could also be anxiety if you don't have any heart condition. Many people with celiac or gluten intolerance have anxiety as well.

If you want to go gluten free you can trial the diet right now. Activia is not a good choice for yogurt however. The last time I looked at Activia it said "may contain wheat" on it (I am in the US so it may be different in other countries. If you want to have more testing done for celiac then you should not go gluten free yet (it could make the test results false negatives). However going gluten free will not prevent the doctors from testing for other conditions. Please try to eat something so you don't lose too much weight and end up in the hospital. Try something simple like grilled chicken and steamed vegetables or some plain rice may calm your system. I hope you can figure it out soon and feel free to ask any other questions you have here.

[Dreamtemperature]

Oh Honey! I had this, too. Found out I was extremely anemic ( iron deficient) . You do not make the blood cells that carry oxygen properly. This makes your heart beat extra to get Oxygen to your body. It means you breathe hard to try to suck up O2 . When you have Celiac, your intestines can't absorb nutrients as well as a healthy body. I took massive doses of iron , vit c, B 12 to get my blood healthy again. Get your blood tested for vit d, b12 & iron. The other problem could be thyroid, so get that checked with blood tests.

As soon as I read your reply I went and took Vitamin C and Iron, I already took B12. Thank you sooo so much. My mom is also Anemic but no one has told me if I was or not. I feel so awful. I hope that this will at least lighten some of the effects I'm having my chest hurts right now

Will this harm my heart? I've been so scared I could have a heart attack and my heart hurts a lot..thank you thank you very much..

[Dreamtemperature]

Welcome Erin! A few things about your post confused me. When you say you had a negative blood test, did they test you for celiac? With your mother having it, it's very likely you have it too. You need to follow up with a heart doctor to rule out any heart condition, but I will tell you that I had some similar symptoms. Mine included chest pain and difficulty breathing rather than just a racing heart beat. I was only 26 when it started and it was scary. Your racing heart beat could also be anxiety if you don't have any heart condition. Many people with celiac or gluten intolerance have anxiety as well.

If you want to go gluten free you can trial the diet right now. Activia is not a good choice for yogurt however. The last time I looked at Activia it said "may contain wheat" on it (I am in the US so it may be different in other countries. If you want to have more testing done for celiac then you should not go gluten free yet (it could make the test results false negatives). However going gluten free will not prevent the doctors from testing for other conditions. Please try to eat something so you don't lose too much weight and end up in the hospital. Try something simple like grilled chicken and steamed vegetables or some plain rice may calm your system. I hope you can figure it out soon and feel free to ask any other questions you have here.

They didn't test me for Celiac at the hospital but they are at my doctor. I just went to the hospital last night, but the doctor blood test is Monday. The blood test at the hospital they said normal for anything like heart problem, or any reason for what was happening.

The chest pain is very awful at times, but only if I'm getting too anxious or scared about the palps, or my heart racing. If it gets really intense the heart pain starts, and sometimes without reason.

I didn't think about the activia having wheat in it I wont eat it again though. That's for sure. I just thought if I had canida that was harming my body it would cleanse it. I have tried to eat meat and it feels like it may come back up? I feel very full of water, but I'm dehydrated. I will try to get some grilled chicken tonight. Thank you so much for this suggestion. I've been practically sucking down vitamins and liquid for two months!

[kareng]

Forgot, get vitamin D checked too. Here's the problem. You may not be able to absorb much of the vitamins. Also, when taking iron, it must be by itself. That means no food, vitamins, tea ( just water) at least 1 hour before and 2 hours after. If it bothers your stomach, no dairy or grain. A little banana or apple. What do we need to do to get you tested for Celiac and all the vitamin deficiencies? Do you have insurance? Can your Mom help you? I'll try to help you figure this out. As will other here.

[Dreamtemperature]

Forgot, get vitamin D checked too. Here's the problem. You may not be able to absorb much of the vitamins. Also, when taking iron, it must be by itself. That means no food, vitamins, tea ( just water) at least 1 hour before and 2 hours after. If it bothers your stomach, no dairy or grain. A little banana or apple. What do we need to do to get you tested for Celiac and all the vitamin deficiencies? Do you have insurance? Can your Mom help you? I'll try to help you figure this out. As will other here.

I don't think I have Vitamin D at home..I took folic acid, B12, baby asprin.

I have medicaid because I've been epileptic since I was 17. It seems like I have the chest pain and panic attacks every day even with nothing really on my mind.

I'll try to eat something in a couple of hours since I just took an iron a bit ago after you suggested it

[gf-soph]

As soon as I read your reply I went and took Vitamin C and Iron, I already took B12. Thank you sooo so much. My mom is also Anemic but no one has told me if I was or not. I feel so awful. I hope that this will at least lighten some of the effects I'm having my chest hurts right now

Will this harm my heart? I've been so scared I could have a heart attack and my heart hurts a lot..thank you thank you very much..

I can see why you are scared, it must be a horrible feeling. You have been the hospital, which is good. If the pain was from your heart being damaged, they can pick that up using blood tests, which I imagine they looked in to at the start to make sure you weren't having a heart attack. Due to the pain you are in you also may have strained muscles in your chest, which can be very painful.

The state your body is in right now will make you feel much more anxious, which in turn could be making you panicky. I'm not saying it's in your head, just that the original pain puts your body in a state of stress, which can then feed in to eachother. In a young and otherwise healthy person, I don't think that the problems you are having right now will be damaging your heart, but of course you should ask your dr about that and get any testing recommended. There are people who sufffer from panic attacks very frequently where the heart races, and that doesn't damage the muscle.

I have been very low in iron and B12 at points, and my heart could pound and race, I was airless and would gasp and I could hardly climb the stairs. It also put me in a weird disconnected state, which was pretty distressing. I definitely second getting your full iron (that's at least ferratin, circulating iron and your saturation), b12 and folate tested, as that could be part of the problem. Get printouts of the tests and post them here if you dont get a clear answer from the dr. If you are low in b12, get the injections, as it will make you feel better much sooner.

If you aren't gluten free already, I would do that right now, in case this is the start of you reacting to gluten. It can cause some extremely weird reactions in people. Also, make sure you are getting some nutrition, otherwise you will stress your body even more. If you can handle dairy, try a liquid meal replacement, here in Australia I know of ensure and sustagen. You will at least get some nutrition to help you out. Otherwise, have you tried pureeing food and eating small amounts? Or soup? Even a few mouthfulls here and there will help.

Hope you start to feel better soon.

[cassP]

i was thinking Anemia too- which is very common with Celiac. i really hope you're getting to a doc REAL SOON-

please get in soon- and keep us posted.

[mushroom]

Erin, honey, a couple of quick questions. Does your stomach feel really bloated and distended when your heart races and your have the problems breathing? This sounds like something I get, and it is a food reaction which causes my heart to go haywire. For me it is the pressure from the gas and bloating pressing on my lungs and heart. If you do get the pressure, can you force yourself to burp to relieve it?

[Dreamtemperature]

@Mushroom I do get bad pressure under my ribs like fullness. But cannot make myself burp.. Not really had much food lately just maybe the Activia cause a food reaction? I've had the pressure under my ribs for a while causing my heart to race and difficult breathing though, no gasiness right now. Stomach isn't so much distended as just kind of feeling very full and nausea really

[mushroom]

@Mushroom I do get bad pressure under my ribs like fullness. But cannot make myself burp.. Not really had much food lately just maybe the Activia cause a food reaction? I've had the pressure under my ribs for a while causing my heart to race and difficult breathing though, no gasiness right now. Stomach isn't so much distended as just kind of feeling very full and nausea really

Yes, this is what I get, the pressure under the ribs; sometimes it feels like a have on a too-tight bra and someone is pulling it tighter You start eating dinner, have a couple of mouthfuls and feel nauseous and can't eat any more because there's no room for anything else. It is all related to what you eat.

Can you go on a very basic diet? Eat things like applesauce, rice, bananas, some white fish, maybe some swiss chard? And drink nothing but water??? Or you could even try some jars of babyfood that have no gluten. Something to get you some nutrition while not making you sick until we can figure out what is doing this to you?

P.S. I take Gas-X - it doesn't help a lot but it does help a bit

[Dreamtemperature]

Yes, this is what I get, the pressure under the ribs; sometimes it feels like a have on a too-tight bra and someone is pulling it tighter You start eating dinner, have a couple of mouthfuls and feel nauseous and can't eat any more because there's no room for anything else. It is all related to what you eat.

Can you go on a very basic diet? Eat things like applesauce, rice, bananas, some white fish, maybe some swiss chard? And drink nothing but water??? Or you could even try some jars of babyfood that have no gluten. Something to get you some nutrition while not making you sick until we can figure out what is doing this to you?

P.S. I take Gas-X - it doesn't help a lot but it does help a bit

Ohhh Ohh exactly.. the tightness like someone is pulling something tighter on you about your chest. This is when I thought I had a build up of Canida in my system and got the Activia (haha) I am going to make a shopping list. I've been dieing to get fish but around where I live (texas) theres not many places to go and get this for a good price. But I will be on the look out soon now that I have some ideas on what to get! I will also even try the baby food!

What did you do to relieve the pressure in your stomache?? Like was it a build up in your body? How long did it last you?..:/ I just thought that by two months this would be gone by now?

[Dreamtemperature]

I can see why you are scared, it must be a horrible feeling. You have been the hospital, which is good. If the pain was from your heart being damaged, they can pick that up using blood tests, which I imagine they looked in to at the start to make sure you weren't having a heart attack. Due to the pain you are in you also may have strained muscles in your chest, which can be very painful.

The state your body is in right now will make you feel much more anxious, which in turn could be making you panicky. I'm not saying it's in your head, just that the original pain puts your body in a state of stress, which can then feed in to eachother. In a young and otherwise healthy person, I don't think that the problems you are having right now will be damaging your heart, but of course you should ask your dr about that and get any testing recommended. There are people who sufffer from panic attacks very frequently where the heart races, and that doesn't damage the muscle.

I have been very low in iron and B12 at points, and my heart could pound and race, I was airless and would gasp and I could hardly climb the stairs. It also put me in a weird disconnected state, which was pretty distressing. I definitely second getting your full iron (that's at least ferratin, circulating iron and your saturation), b12 and folate tested, as that could be part of the problem. Get printouts of the tests and post them here if you dont get a clear answer from the dr. If you are low in b12, get the injections, as it will make you feel better much sooner.

If you aren't gluten free already, I would do that right now, in case this is the start of you reacting to gluten. It can cause some extremely weird reactions in people. Also, make sure you are getting some nutrition, otherwise you will stress your body even more. If you can handle dairy, try a liquid meal replacement, here in Australia I know of ensure and sustagen. You will at least get some nutrition to help you out. Otherwise, have you tried pureeing food and eating small amounts? Or soup? Even a few mouthfulls here and there will help.

Hope you start to feel better soon.

I've had like about 2 almost three panic attacks in one day. It's usually suddenly just my heart racing when I try to watch a movie and relax, and then I can't control it and my chest hurts. I'm really glad you told me it wont be damaging my heart I was so worried about that. I've thought about it ever since I noticed my irregularity of my heart. How did yours go? Have you already begun treatment or do you still have these feelings?

I took Iron and I feel better, I kind of took it quite late so next time I will try to take it earlier. I try to be pretty cautious about those things. I know it's silly maybe I'm just a little scared about how no doctor can tell me what's wrong with me. But an hour or two after taking the iron pill my heart rate has relaxed. It has gone from being the normal of 100+ to now maybe in the 60 range even?!!??!?! I'm so happy and excited I had iron at my house this whole time and I had no idea it could help my heart.. I was so shocked I was almost weirded out that it was so low. I was like "So low is this even normal?!" Because it's been so high for so long. I can't say how much of a difference I feel.

I didn't feel like I was getting oxygen at all to even when I was breathing (the air would even feel hot even if it wasnt?) and I would panic at that, and now when I breath I feel fine! And I don't feel as disoriented. Maybe still hard to walk, but maybe my braincells are trying to recooperate after the loss of all the air! if I have any left now! ;D

I ate soup earlier I had Miso soup that's what I've been eating. I'm going to try some Fish and baby food, and some steamed vegs that everyone sugested. I don't mind going completely gluten free. I don't even like bread or anything. Just every time I got something, even a drink I would get really sick. So I will probably be eating mainly fish and vegs from now on!

[GFinDC]

Hi Erin,

You should get your thyroid checked for Hashimotos' thyroiditis antibodies, and also check for Grave's disease. Hashimotos' thyroiditis is a condition where the body makes antibodies to the thyroid and attacks it. Hashimoto's can cause symptoms of Grave's disease (hyper-thyroid) and also hypo-thyroid symptoms (low thyroid). People with celiac disesae tend to get other auto-immune diseases more often. including Hashi's. Hashimoto's damages the thyroid but sometimes people on here have reported their Hashimoto's symptoms get a little better on the gluten-free diet. Not always though.

It might help to get some sub-lingual B-12. That's usually either a liquid or a small pill that dissolves under the tongue. Make sure to check all you vitamins for gluten-free.

[ravenwoodglass]

My name is Erin. I'm twenty, going to be twenty-one in September. I'm 5"3 and weigh 132ibs. My mother has celiac disease, and I always knew I had it but I just felt sick if I tried to drink alcohol, or eat too much junk food, so I didn't eat out much.

Does this mean you are still eating gluten and just avoiding junk food and alcohol?

If you are still eating gluten when you get done with celiac screening stop. The symptoms you are describing sound like gluten reactions. The problems with balance and the difficulty walking could be gluten ataxia. Even if your celiac screening is negative you would be wise IMHO to be strictly gluten free.

[mushroom]

Thanks for adding those other symptoms to your first post, Erin. You say you know you have celiac; I guess I just assumed you were eating as a celiac, but maybe not? Do give us the answer to that - you said you were eating only miso soup??? Have you also been eating gluten products?

[Ahorsesoul]

When I took my dad to a heart Arrhythmia specialist at Mayo Clinic we were told the best way to help a fast beating heart was to drink a sports drink like Gatorade. Since I have the same problem of my heart racing at times I found this worked for me. Another note, some people find they have seizures when eating gluten.

[gf-soph]

I've had like about 2 almost three panic attacks in one day. It's usually suddenly just my heart racing when I try to watch a movie and relax, and then I can't control it and my chest hurts. I'm really glad you told me it wont be damaging my heart I was so worried about that. I've thought about it ever since I noticed my irregularity of my heart. How did yours go? Have you already begun treatment or do you still have these feelings?

I took Iron and I feel better, I kind of took it quite late so next time I will try to take it earlier. I try to be pretty cautious about those things. I know it's silly maybe I'm just a little scared about how no doctor can tell me what's wrong with me. But an hour or two after taking the iron pill my heart rate has relaxed. It has gone from being the normal of 100+ to now maybe in the 60 range even?!!??!?! I'm so happy and excited I had iron at my house this whole time and I had no idea it could help my heart.. I was so shocked I was almost weirded out that it was so low. I was like "So low is this even normal?!" Because it's been so high for so long. I can't say how much of a difference I feel.

I didn't feel like I was getting oxygen at all to even when I was breathing (the air would even feel hot even if it wasnt?) and I would panic at that, and now when I breath I feel fine! And I don't feel as disoriented. Maybe still hard to walk, but maybe my braincells are trying to recooperate after the loss of all the air! if I have any left now! ;D

I ate soup earlier I had Miso soup that's what I've been eating. I'm going to try some Fish and baby food, and some steamed vegs that everyone sugested. I don't mind going completely gluten free. I don't even like bread or anything. Just every time I got something, even a drink I would get really sick. So I will probably be eating mainly fish and vegs from now on!

That's great that you've had improvements from the iron. I had a rollercoaster of low iron and B12 for about a year, until I got a good GP. We were monitoroing both at 2-3 week intervals for a while, as my levels would just totally crash. It got to the point where i could walk in there and say I feel low in iron, and she would just inject me, as she knew that I could identify them 100%.

I got iron injections, which is quite uncommon, but I just can't digest the iron pills. Iron injections obviously help quicker than the pills, I think when I was at my worst I had weekly iron and B12 injections for about 2 months, and after about 1 month the breathlessness and pounding heart went away. I never had panic attacks luckily, but the airless feeling is pretty distressing!

OH!! I just remembered something! A couple of months ago I got really breathless a lot, it was worse than usual and my iron/b12 wasn't that low. It seems a bit nuts but I stopped taking a medication (the pill) and i noticed a couple of days later that my entire stomach and diaphram had been totally locked up. I only realised when it was better. The breathlessness also went away, it turns out I had been cramped up solid, and so was breathing really shallowly, causing the airless feeling. That ties in with some of the other posters who have mentioned stomach pain and cramping leading to the pains in the chest.

When you pay attention to how you are breathing, are you moving your shoulders and the tops of your ribs, or can you feel the bottom of your ribcage move too? Often when people get panicky they can start breathing shallowly, which can bring on hyperventilation. If you aren't already, it's a great idea to spend some time practising breathing deeply and slowly. It helps get your oxygen levels up too.

Hopefully with iron and B12, and a easy to digest diet, you may find a way to reduce the pain you are in, and the stress with it. It's a very primal thing to freak out when you feel you can't breathe, but if you know what's going on it should help to break the panic response that kicks in. If you can afford it, psychologists have a lot of techniques to help manage panic attacks, it could be a good option if they are happening frequently or stopping you from doing things.

I think the gluten-free diet is a great idea, as it may be the villain behind any low nutrient levels and possible pain from the stomach? I definietly recommend keeping regular food and symtpom diaries, it helps so much to know whether things are improving, or to identify triggers for problems.

[nora-n]

Sometimes epilepsy is just caused by gluten, by the way.

Can you list all the tests you had? Please?