I'm Still Dizzy!

[FootballFanatic]

So I have been gluten free for 3 months tomorrow, and I got really dizzy about 2 months into it, had my blood tested, had my hearing tested, (didn't have the vertigo test because I was too stressed out for it...I am sick of testing and my dizziness doesn't seem to be when I turn my head the wrong way).

Anyway, the blood work looked normal except my HDL Cholesterol was low, and my doctor said that could be a sign of malnutrition so to make sure I'm getting a lot of calories per day. I've been making myself eat even when I'm not hungry and eating a little bit more of a variety but I am still dizzy. It did improve to where I would only get dizzy once or twice a day but for the past 3 days it's been pretty constant.

Anyone have a similar experience or ideas of what else is going on?

The only other thing I can think of is anxiety, I do have high anxiety and take medication for it, and the strange thing is I feel like it's under control right now.

[Lisa]

B-12 helped me tremendously with the dizzies.

[mama2]

So I have been gluten free for 3 months tomorrow, and I got really dizzy about 2 months into it, had my blood tested, had my hearing tested, (didn't have the vertigo test because I was too stressed out for it...I am sick of testing and my dizziness doesn't seem to be when I turn my head the wrong way).

Anyway, the blood work looked normal except my HDL Cholesterol was low, and my doctor said that could be a sign of malnutrition so to make sure I'm getting a lot of calories per day. I've been making myself eat even when I'm not hungry and eating a little bit more of a variety but I am still dizzy. It did improve to where I would only get dizzy once or twice a day but for the past 3 days it's been pretty constant.

Anyone have a similar experience or ideas of what else is going on?

The only other thing I can think of is anxiety, I do have high anxiety and take medication for it, and the strange thing is I feel like it's under control right now.

I was just at the doctors today because I have been dizzy too. Been gluten-free 4mths now. They said my BP was a lil high (never been high), when I was at another docs a mth ago it was low they said? I am going back for blood wrk.

hope you figure it all out and start to feel better.

[ravenwoodglass]

In addition to the sublingual B12 which is essential have you been eating a lot more soy than you did prediagnosis? I have gluten ataxia which had gotten much better gluten free but not resolved completely. After having some other problems crop up I got tested for soy intolerance. Postive results had me eliminating soy which I never consumed much of prediagnosis but was now in almost everything I ate. To my surprise much of my residual balance and dizziness issues have improved greatly with eliminating the soy. This may not be the case with you but I thought it might bear mentioning.

[Sugarmag]

It could be that you are hypoglycemic. Did they test your blood sugar when you had the blood work done? I've always had low blood sugar, but after going gluten free, it dropped even more. (it's usually around 60) I can feel when I get low blood sugar, I get really dizzy, and shaky, nervous. Mine also gets worse when I'm really stressed out, like you were talking about. But if it's still going on after getting the stress a bit under control, I'd check your blood sugar.

I'm also allergic to soy, and noticed I got dizzy and nauseous when I had soy (as well as skin rash).

Now I make sure I eat something every 2-3 hours, no matter what! I don't ever have a big meal, it's just a bunch of mini-meals/snacks all day really. I notice if I eat three "regular" meals a day, I can't take it, I get dizzy, and have passed out.

Good luck!

[FootballFanatic]

I was thinking of eliminating soy but I just don't have enough energy for that right now. My life is so GO GO GO that I don't have the time to even consider it.

[JNBunnie1]

I was thinking of eliminating soy but I just don't have enough energy for that right now. My life is so GO GO GO that I don't have the time to even consider it.

Do you eat a lot of soy on a daily basis?

Also, I had very low cholesterol as well. Your doctor is on the right track saying to get lots of calories, but the idea is to get fats into your diet that are digestible. Raw olive oil and avocados are a very good way to do that, and taking a good cod liver oil will help a lot. You actually need cholesterol in your diet, it helps digest vitamins, and makes up more than 25% of the membrane wrapping on your cells, and a higher percetage in your brain cells. I haven't had a dizzy spell like you're describing since I started planning my food around fat. Lots of eggs, too.

[FootballFanatic]

Not eating a lot of soy, only things that might be in my medications, or the gluten free pretzels and cookies and cereals? I don't think the cereal have soy...

Anyway, I just really can't afford to give those up right now, I am away from my house for too long in the day.

[JNBunnie1]

Not eating a lot of soy, only things that might be in my medications, or the gluten free pretzels and cookies and cereals? I don't think the cereal have soy...

Anyway, I just really can't afford to give those up right now, I am away from my house for too long in the day.

If that's the case, and I'm no expert, then I'd guess you're probably not ingesting enough soy to be having this kind of reaction. I might be wrong, but hey. Oh, if you'd like a filling trail mix, here's what I do.

Sunflower seeds

pumpkin seeds

gluten-free pretzels

banana chips

nuts- walnuts, almonds, peanuts, pecans

chocolate chips -Enjoy Life

coconut flakes

And I just toss it all in a tupperware container and shake it around, it's very filling and keeps you going for a while. Just in case you get tired of plain pretzels! Sometimes I add raisins too. Try to find a grocery store that carries the Enjoy Life chocolate chips, they're much more expensive at the health food store.

[hathor]

Some people get relief from balance disorders with ginger and/or gingko. I know I recovered from my problem (mal de debarquement syndrome) with gingko. I think ginger works more with the disorders that are accompanied with nausea. Gingko improves blood flow through the capillaries, and thus the inner ear.

Of course, dizziness can come from many different things and so should be checked out. It can be anemia, a lack of B12, low blood sugar, low blood pressure, and on and on.

One other thing that can cause it that hasn't been mentioned is dehydration.

[Jo Ann]

Celiacs commonly are allergic/sensitive to other foods besides gluten. Our daughter has several food allergies including dairy (casein). Because she wasn't feeling as well as she should, she started checking into her meds. Many medicines contain dairy (i.e. coumadin, topamax, synthroid, etc.). Checking generics was next to impossible, because so many companies make the same generics. Sometimes she was told by the company rep. that a certain med MIGHT contain dairy. The FDA should require truth in labeling for medicines as well as food. Anyway, why not check the ingredients of any meds you take.

Jo Ann

[hathor]

I had an additional thought after posting, but I see that Jo Ann beat me to it. It could be another food intolerance. It seems like they can come to the fore after being gluten-free for awhile.

You could try a food/symptom diary and see if you notice any pattern.

[dionnek]

I have 2 thoughts that I was looking into for myself recently - you mentioned you are taking anxiety meds - could dizzyness be a side effect? I have been taking zoloft for about 8 months, and just recently my dizzyness came back (had major dizzy spells/blacking out since age of 12 - I'm now 34, which went away when I was dx with celiac 1 1/2 years ago, but recently - last month or so - have come back). Also, I'm looking into soy being a possible problem. I never ate much soy before going gluten-free, but now I notice that soy is used in aa lot of gluten-free foods! I don't eat stuff that is soy based (tofu, soy milk, etc.), but a lot of the gluten-free alternatives use soy flour or other soy based products, so I"m going to try to cut that out and see if that helps. Just my thoughts.

[spunky]

This probably isn't too helpful, but just saying I've had a few dizzy spells off and on since quitting gluten, 19 months ago. Along the way, I had to quit soy too...was already dairy free. I had been vegan for over 10 years and getting quite hungry without gluten or soy, so I picked up fish and eggs...then later realized eggs now make me sick too, although they never did way back before being vegan.

As far as feeling good though, I really feel great now...19 months into gluten free, about 9 months into soy free, and no dairy. But once in a while I am noticeably dizzy and even sort of lose my balance with it too. Can't figure that one out...have only had it on and off a few times since I gave up gluten...it isn't frequent or bothersome, just noticeable...dont' know what it means. Other than that, I've never felt better than I do now. Just wondering if this is possibly just some adjustment of some sort while people recuperate from getting off of foods they are intolerant too?????