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katrina500

Severe Dizziness

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I was diagnosed with celiac disease on 27th November and so have been gluten free for around 5 weeks. The majority of my symptoms were, and remain, neurological. More specifically I am suffering from the most awful dizziness to the extent that I have to suddenly grab onto something to stop me feeling over. It seems to be made worse by exercise (a light 45 minute walk yesterday). I have had a significant period off work and they are now getting a bit fed up of me!

Since going gluten free, I'm sure the dizziness is worse. My question is: is this normal? How long must I wait before the dizziness subsides? All my blood tests for iron, B12 and such like are fine. Would lactose intolerance cause these problems as well?

I look forward to any comments, and thanks in advance, I'm getting beyond depressed about the whole thing. Thank you.

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Any comments appreciated. I fell over today in the street on account of dizziness which was most embarassing. I have three days to go before I absolutely have to go back to work, and I'm a bit scared to tell the truth. Thanks, and Happy New Year to you all from sunny (not really) London, UK.

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I'm sorry you are going through this. I know how hard it is. When you say your B12 levels are fine what are they? And do you take a vitamin with folate? The reason I ask is some places consider anything above 250 fine when that is actually too low and also folate can give a B12 reading that is higher than it really is.

What are you eating? Are you eating mostly whole unprocessed foods? That is the safest way to go for a while. It can take some time for neuro issues to resolve and you will have less chance of CC with whole unprocessed foods. Do be sure to check all supplements and medications for gluten content, your doctor will not know if something is gluten free.

I hope this resolves soon for you.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hi, I am new to this forum so I hesitated to post.

Everyone is soooo different but I will relate my experience.

I also at different points have had that kind of dizziness. After making sure there was not a food triggering that response,,there may have been,,, I stated taking a adrenal support supplement which I now take daily .

I will be honest I am not sure if the supplement is why the dizziness stopped or being SUPER strict in my diet.

I hope you are able resolve what is triggering the dizziness,,,,,it was a HORRIBLE feeling,so incapacitating, I could not,would not drive for fear of it happening while driving


Gluten free Oct/09
Soy free Nov/10

 

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I'm sorry you are going through this. I know how hard it is. When you say your B12 levels are fine what are they? And do you take a vitamin with folate? The reason I ask is some places consider anything above 250 fine when that is actually too low and also folate can give a B12 reading that is higher than it really is.

What are you eating? Are you eating mostly whole unprocessed foods? That is the safest way to go for a while. It can take some time for neuro issues to resolve and you will have less chance of CC with whole unprocessed foods. Do be sure to check all supplements and medications for gluten content, your doctor will not know if something is gluten free.

I hope this resolves soon for you.

Thanks so much for your reply. I have no idea what my B12 levels are and am just getting used to questioning my Doctor. I was just told they were fine, but now I'll ask and will start a liquid iron supplement in any event. Most of my food is unprocessed, but I'll be even more strict. Do you think excess alcohol could contribute to the dizziness? I'm a fairly heavy social drinker (wine, whiskey, mainly and I smoke!).

Best wishes

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Hi, I am new to this forum so I hesitated to post.

Everyone is soooo different but I will relate my experience.

I also at different points have had that kind of dizziness. After making sure there was not a food triggering that response,,there may have been,,, I stated taking a adrenal support supplement which I now take daily .

I will be honest I am not sure if the supplement is why the dizziness stopped or being SUPER strict in my diet.

I hope you are able resolve what is triggering the dizziness,,,,,it was a HORRIBLE feeling,so incapacitating, I could not,would not drive for fear of it happening while driving

Hi there and thanks for replying. I think I've been super strict in the diet, but maybe I did make mistakes. I'll try the supplement you suggest (though have never heard of it!). How long did yours take to go away if you don't mind me asking?

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The neuro issues may take longer to go away, and may never completely recede. That said, i think my balance issue turned out to be CoQ10 def, rather than celiac/gluten intolerance, so perhaps you should check into that as well. And, yes, you need to get the NUMBERS on your lab tests, never trust the docs to see the big picture....good luck

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I was diagnosed with celiac disease on 27th November and so have been gluten free for around 5 weeks. The majority of my symptoms were, and remain, neurological. More specifically I am suffering from the most awful dizziness to the extent that I have to suddenly grab onto something to stop me feeling over. It seems to be made worse by exercise (a light 45 minute walk yesterday). I have had a significant period off work and they are now getting a bit fed up of me!

Since going gluten free, I'm sure the dizziness is worse. My question is: is this normal? How long must I wait before the dizziness subsides? All my blood tests for iron, B12 and such like are fine. Would lactose intolerance cause these problems as well?

I look forward to any comments, and thanks in advance, I'm getting beyond depressed about the whole thing. Thank you.

Hi!

I would like to tell you that you are not alone. I'm also suffering from the dizziness which is worse by exercise, or house work. I'm 7 months gluten free and 6 and half months casein(milk) free. I can tell you for sure that milk isn't the cause of our dizziness. Otherwise I would be cured months ago.

I saw three Gastroenterologists, but none knew what was it. My doctor already checked almost everything- B12, iron, vitaminD, folate, thyroid, adrenal glands, minerals(zink, coper, fosforus)and others. I had ECHO, 24 hours HOLTER monitor- twice, stress test,HIDA scan to check my gallblader (it can cause dizziness and fainting), MRI with contrast and CT scans. I also had test for fat in stool( elevated just 1+) and pancreatic enzymes(gastrin-small elevation and trypsynogen- normal) The results: Some vitamins were on border line (today are elevated, or normal),and every test came back normal, but I'm still dizzy. I also have very strong feeling of fainting(pre-syncope).

With the time I found out that I have two types of dizziness. One is after fat, or sugar which is associated with pancreatic insuficiency (My pancreas isn't working properly. I don't have enough of pancreatic enzymes and I'm taking enzymes for it),another is asociated with the low blood pressure, or with the big difference between the one in sitting position and one when I will stand up.

My doctor sent me to see a very good neurologist- specializing in these types of dizziness. He ordered more blood work. I'm waiting for the results. He sent me for two tests -EEG (to check brain waves) and EMG (to check nerves in my legs and arms because I also have some thingling and numbness in them). I also need to see a cardiolog- specialist because I need table TiLT test(they will check my blood pressure after movement- table will move with me). I will see him on Friday.

I found out what is helping to me - no fat in my meals, not even half of the teaspoon, and tons of salt. I will eat everything VERY, VERY salty. After I'm force to drink water and my body with the help of salt will retain it which helps to elevated my blood pressure and will keep it up.

I will know more this week. I hope. I have enough of dizziness for the life time.

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Thanks so much for your reply. I have no idea what my B12 levels are and am just getting used to questioning my Doctor. I was just told they were fine, but now I'll ask and will start a liquid iron supplement in any event. Most of my food is unprocessed, but I'll be even more strict. Do you think excess alcohol could contribute to the dizziness? I'm a fairly heavy social drinker (wine, whiskey, mainly and I smoke!).

Best wishes

While most celiacs can tolerate distilled gluten like is in vodka or whiskey not all of us can. Alcohol in excess could contribute to continued issues. If you have to drink go with wine but it would be best to drop the alcohol if you can for a while until you have healed fully.

Do not heavily supplement iron unless you know that it is needed. While B12 is a water soluable vitamin and any that your body does not need is excreted iron is not and excess iron can be harmful.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I had dizziness that sounds very similar, and mine turned out to be completely gluten related. goodness, I remember standing up one time and just falling flat out on the floor, because I couldn't keep my balance even in the slightest. However, part of my problem was that I am very, very sensitive to gluten and CC in my food. Alcohol - I haven't found any I can drink. But my GI also told me to stay away from it for at least 6 months as it impairs your body's ability to heal the gut.

My dizziness finally went away when I went super, super, super gluten free.

- I bought meat that was sealed at the slaughterhouse so the butcher couldn't cc it. Or seafood that was flash frozen on the boat.

- I wash and peel my fruits and veggies to avoid gluten from pesticides, mulches, waxes, and coatings.

- I dropped spices and started growing herbs.

- I dropped all grains because they were all too cc for me to eat, unless I found a farm that only grew that one grain and shared no equipment.

- I dropped nuts that are already shelled because of processing cc risks. I dropped beans for the same reason.

- I started using only olive oil from a very gluten free source.

- I dropped iodized salt because of the added corn that they all have, which was gluten cc too much for me. (although I had to get a liquid iodine supplement for iodine, because of that).

- and I dropped all the dairy at first, to try and help with that, too.

Now, I'm not saying this is your issue. There are SO many things that can cause vertigo, honestly. But if you wish to try and really go super gluten free to see if it's an issue, the above list might help you out.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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