Crazy Dizziness... Normal Or No?

[PurpleMonkey]

I have been suffering for 3 years with the pain and other various symptoms of Celiac Disease. I finally got a referral to a GI Dr last month and received a phone call from him 3 days before Thanksgiving to let me know I indeed had Celiac Disease. I haven't yet been back to see him like he has asked me because I was out of town on business...

I have been having major lightheaded/dizziness, shortness of breath and blacking out when I stand up. I've been getting dizzy on and off for the last 3 months or so but this is getting bad and scaring me. I don't know if I should go to the emergency room or if this is something normal I should expect. I have been following the "gluten-free diet" to the best of my ability since Friday (when I got home and could research the disease and what to do to treat it) being as the doctor's assistant didn't tell me anything over the phone, other than the doctor would like to see me on the 28th.

Any advice?

[rosetapper23]

I'm not a doctor, but your symptoms could be due to low Vitamin B12. Do you sometimes feel as though you're "gulping" for breath? Especially when you're lying down? This is a typical symptom of B12 deficiency. Buying sublingual B12 tablets over the counter (2,500-5,000 mg) won't harm you, and you'll notice an immediate improvement in your symptoms if this is what's causing them. You may also be suffering from iron anemia, but you would need a doctor to test you for that.

Hopefully, when you see your doctor on the 28th, he will order the appropriate tests for nutritional deficiencies....and you'll have a complete answer to why you're feeling unwell. In the meantime, however, self-treating with sublingual B12 tablets won't do you any harm....and you may feel MUCH better.

[jerseyangel]

I had that same awful dizziness before being diagnosed. I actually fainted at work a couple of times. I was anemic-- which is a fairly common symptom of Celiac. It completely resolved within about 6 months on the diet.

Your doctor can order blood testing to check for that.

[tarnalberry]

The technical name for dizziness or lightheadedness immediately on standing is orthostatic hypotension. (When you stand up quickly, the body doesn't adjust blood pressure quickly enough and your brain literally gets too little blood for a short period of time.)

Many things contribute to it, so investigating underlying conditions/states is good. Vitamin deficiencies, vascular problems, or just straight dehydration can contribute. But know that it is not unusual for nothing to be really wrong and some people are simply more likely to experience this. (I'm one of them.)

[PurpleMonkey]

The technical name for dizziness or lightheadedness immediately on standing is orthostatic hypotension. (When you stand up quickly, the body doesn't adjust blood pressure quickly enough and your brain literally gets too little blood for a short period of time.)

Many things contribute to it, so investigating underlying conditions/states is good. Vitamin deficiencies, vascular problems, or just straight dehydration can contribute. But know that it is not unusual for nothing to be really wrong and some people are simply more likely to experience this. (I'm one of them.)

It's not just when I stand up, I'm continually dizzy.

[PurpleMonkey]

I saw my doctor on the 28th. All he said to me was "you tested positive for Celiac but I don't believe it being as the typical Celiac is severely underweight and you aren't".... I gained about 70 lbs when I has my daughter in 09. Since August I have lost 40 lbs without even trying. Luckily since my tests came out positive he is actually still treating me with the diagnosis. I have been referred to a Dietitian/Nutritionist, and she will be doing my nutritional blood work at the appointment next week and also give me vitamins. This process just seems like it's taking forever and more and more symptoms are popping up. I guess it could be worse though.

[jerseyangel]

I saw my doctor on the 28th. All he said to me was "you tested positive for Celiac but I don't believe it being as the typical Celiac is severely underweight and you aren't".... I gained about 70 lbs when I has my daughter in 09. Since August I have lost 40 lbs without even trying. Luckily since my tests came out positive he is actually still treating me with the diagnosis. I have been referred to a Dietitian/Nutritionist, and she will be doing my nutritional blood work at the appointment next week and also give me vitamins. This process just seems like it's taking forever and more and more symptoms are popping up. I guess it could be worse though.

Ugh! This is very outdated thinking. Many people with Celiac are normal or overweight. I was slightly overweight myself (15-20 lbs.) but right before I was finally diagnosed I began losing weight rather quickly and uncharacteristically.

You tested positive, and thankfully the doctor is treating you according to that. Best of luck at the nutritionist--I think blood work is definitely in order. I still think you could be anemic, (which is common with Celiac, but your doctor may not have connected it) which would account for the constant dizziness. Keep us posted , and know that this will all get sorted out. We are here for ya!

[rosetapper23]

Yes, your doctor really DOES have outdated information regarding celiac. MOST people with celiac actually are overweight rather than underweight when they are diagnosed. He doesn't know what he's talking about! I'll bet he's missed a bunch of celiac diagnoses because of his thick-skulled thinking. If you do a keyword search, you may be able to find an article or two on this very subject it so that you can show it to him.

[Takala]

It's not just when I stand up, I'm continually dizzy.

These are symptoms of ataxia, dear. It's a neurological condition that goes along with celiac. Cheer up, once you stick to the diet strictly, it starts to go away, as long as you are careful and diligent, and secondly, it's the best motivator I've ever had to stay on a gluten free diet. Sometimes this means we are really sensitive to cross contamination, so you may want to start your journey by avoiding as much processed food as possible. And DO supplement with those gluten free B complex vitamins (which you can find in most stores) ! "Normal" people may not need them, but we do. Nutritionists may try to tell you to eat like a typical person, but gluten free.... which will include a lot of cereal and grain products, some of us just cannot do that, at all, because we do not react to carbohydrates the same way, so be wary if you sub in the usual gluten free versions of processed foods and don't improve.

Also, most of us start out by being lactose intolerant, because the part of the intestine damaged by the auto immune reaction is also the part which works to digest milk. This means that you may only be able to handle non lactose dairy products (properly processed high quality yogurt, or aged cheese, or butter) at first, or you may have to temporarily skip dairy for a while, then add the non lactose versions in later, and see if you can tolerate it. You know the current "low- fat" diet craze that claims milk fat leads to obesity ? This actually does not work for us, because skim milk has a lot of the lactose (milk sugar) and the high fat cream, which butter is made out of, does not. There is another subset of people who cannot handle any dairy, at all, because they are reacting to the cow milk protein, casein, so they end up using dairy substitutes. The third common culprit that a lot of celiacs react to is soy flour and soy proteins (sometimes trace soy oil is tolerable). I am putting this information out there now, so you will be aware of what your options are for further adjusting your diet. Also, hold off on gluten free oats until you get the rest of it under control, some of us react to them anyway, and it's best that they not be introduced and tested at first, so you can see what your reaction is, when you are healthier.

Are you taking any over the counter forms of acid reflux inhibitors ? That made it worse for me, oddly enough.

[PurpleMonkey]

JerseyAngel & rosetapper23: Thank you so so much! Your comments had me giggling. I just can't believe he could be so closed minded on a subject like this. Even if I was 400lbs who cares, that's no reason to say even though my tests were blatantly POSITIVE that it was not my case. That's like saying men cannot get breast cancer. It would be so much easier to get used to this if I didn't have people telling me "it's just food, you can eat it if you want" My grandmother is the only one who has done research and realizes I'm not crazy or making up the pain, so to speak. And she sticks up for me quite a bit. Luckily.

Takala: The "normal people" thing cracked me up. I keep hearing about the dairy thing but i didn't fully understand the reasoning of taking it out in the beginning. Thank you for all the help I will definitely see if any of these things effect me.

I have tried staying far away from gluten for about a week now. I had crackers in my salad (my grandmother says these were gluten free), and I have had Cocoa Pebbles Cereal for breakfast and the milk didn't seem to bother me. I DID however today, I grabbed a slice of pizza without thinking and ate half of it. I've regret it all day, been in and out of the bathroom either puking or other.... I feel stupid, but I guess it's not completely registered to me that I cannot have the things I'm used to.

[PurpleMonkey]

These are symptoms of ataxia, dear. It's a neurological condition that goes along with celiac. Cheer up, once you stick to the diet strictly, it starts to go away, as long as you are careful and diligent, and secondly, it's the best motivator I've ever had to stay on a gluten free diet. Sometimes this means we are really sensitive to cross contamination, so you may want to start your journey by avoiding as much processed food as possible. And DO supplement with those gluten free B complex vitamins (which you can find in most stores) ! "Normal" people may not need them, but we do. Nutritionists may try to tell you to eat like a typical person, but gluten free.... which will include a lot of cereal and grain products, some of us just cannot do that, at all, because we do not react to carbohydrates the same way, so be wary if you sub in the usual gluten free versions of processed foods and don't improve.

Also, most of us start out by being lactose intolerant, because the part of the intestine damaged by the auto immune reaction is also the part which works to digest milk. This means that you may only be able to handle non lactose dairy products (properly processed high quality yogurt, or aged cheese, or butter) at first, or you may have to temporarily skip dairy for a while, then add the non lactose versions in later, and see if you can tolerate it. You know the current "low- fat" diet craze that claims milk fat leads to obesity ? This actually does not work for us, because skim milk has a lot of the lactose (milk sugar) and the high fat cream, which butter is made out of, does not. There is another subset of people who cannot handle any dairy, at all, because they are reacting to the cow milk protein, casein, so they end up using dairy substitutes. The third common culprit that a lot of celiacs react to is soy flour and soy proteins (sometimes trace soy oil is tolerable). I am putting this information out there now, so you will be aware of what your options are for further adjusting your diet. Also, hold off on gluten free oats until you get the rest of it under control, some of us react to them anyway, and it's best that they not be introduced and tested at first, so you can see what your reaction is, when you are healthier.

Are you taking any over the counter forms of acid reflux inhibitors ? That made it worse for me, oddly enough.

Also, No ma'am... The GI doctor tried giving me something, I took it for 2 days and stopped. I can't remember to take pills and I don't even feel like I have acid reflux or heart burn or anything like that so I haven't even cared to take them.

[megsybeth]

I hope your dizzyness goes away soon. I did have that before diagnosis for a few different reasons, but related to celiac. Low blood sugar at times, low blood pressure at times, anemia. I had ataxia but that mostly made me clumsy. Like banging my head on things, bruises all over. Your doctor is really wrong about that. About half of all celiacs are over-weight, same as the general population. And a person can be very over-weight and also be malnourished. I think your nutritionist should know this.

Pizza is the worst. When I was waiting for testing for my son and me I had pizza knowing it was probably our last "normal" pizza. Oh my god did I blow up like a pinata. I just don't understand how I didn't figure this celiac thing out years ago just based on pizza bell and...other stuff. I'm pretty sure to get it stretchy they use extra gluteny dough.

[SensitiveMe]

I had this frightening dizziness, and shortness of breath at times. The dizziness happened also when I would be sitting or lying down. Sometimes when I would go to get up from sitting or lying down I would feel like I was passing out and so I quickly sat back down for awhile. Most scary to me was when I would be lying down and feel like I was going to fall off the bed or couch.

The dizziness as well as the shortness of breath went away...for me I think it was in about 2 months after not eating wheat.

Other symptoms eventually went away also...such as nausea, numbness and tingling of arms and legs, pain, severe skin itching. And a raised rash which was below both elbows (and which I had for many years and did not respond to any treatments) went totally away in 6 months after stopping wheat.

I did take B-12...but I used the patches you put behind the ear. They seemed helpful to me and I used them for well over a year. I have since stopped using them as I felt I didn't need them any more.

I was also given acid reflux inhibitors which I took for a few days and stopped because I didn't feel like I had acid reflux or heartburn. I really don't know why both my general doctor and digestive disease doctor ordered acid reflux pills for me and tell me to take them. I never even once complained of any acid feelings or heartburn...I just had nausea. And when I had nausea, and enough other problems going on I didn't feel like taking any pill I knew I didn't need.

I do remember how frightening these symptoms can be. I went to the Emergency Room 3 times within a couple of weeks. They did work hard to try to find out what was wrong with me but couldn't find anything specific. And at least they treated my nausea by giving me something that worked (plus a prescrition for them) instead of giving me acid reflux pills which did nothing.

My best advice is to work diligently avoiding wheat and learning what foods and things you can no longer have. Write down or print out all the forbidden foods you need to avoid because I believe the key to starting to feel better will be total elimination of wheat.

And I hope you will start to feel better soon.