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Newly Diagnosed - Dizzy - 7
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Hi celiac community - I am newly diagnosed with Celiac and I've been gluten free for 7 weeks. The diarrhea has stopped - thank God. But since the sudden onset of my symptoms - before and after going gluten free I have been dealing with dizziness that seems brought on by eating. I am following leaky gut protocol for diet so am eating entirely different than ever before. No corn, soy, or any of my found allergens. Sometimes the dizziness starts when I'm eating. Sometimes it doesn't go away for 2-3 hours. Sometimes my eyes go blurry as well. My holistic dr just says this is the celiac/leaky gut affecting me neurologically and that this will go away as my intestines heal.

Just want to hear if other celiacs have this symptom and how it resolved for you. Tired of being dizzy...

Edited by Rose74
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Also, went through fasted glucose testing and multiple examinations of my low blood pressure (the sitting to standing tests) to see if that was causing the dizziness...none of it showed as the cause.

Edited by Rose74
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For me, this is a sign of malabsorbtion, which I think it just a temporary thing (as in a few months to a few years) related to leaky gut. I was having reactions to all kinds of foods I had thought were safe, that I had eaten for years -- simple things like eggs, which I'm not at all allergic to. Turns out that leaky gut leads to some malabsorbtion that won't show up as an allergy, and not everyone has the same problems with the same foods.

Are you keeping a food diary? Try seeing if you can ID the foods that cause this. At first it may seem like everything does, but I isolated out five food initially that didn't, and then slowly kept trying to add in new ones and now I have just over a dozen I can eat without dizziness (I'm starting my second month gluten-free). I found some studies on PubMed that suggest your leaky gut will improve a little within two months, then will be even better in a year. It may take a lot longer to heal completely.

If you go to an MD, they can also test you further issues you may be having. It's normal for your system to be a little off right now, so you may want some bloodwork/stool testing done for things like H Pylori (which causes ulcers), vitamin/mineral deficiencies (anemia esp., given your dizziness), and a whole host of other things.

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Welcome Rose74,

I am sorry you have suffured, but I am glad your on the trek to recover. I suffer very little dizziness, but I did have alot of brain fog and fatigue that was sort of like dizzy. I have done many things and have not had the problem since my last virus.

Diana

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For me, this is a sign of malabsorbtion, which I think it just a temporary thing (as in a few months to a few years) related to leaky gut. I was having reactions to all kinds of foods I had thought were safe, that I had eaten for years -- simple things like eggs, which I'm not at all allergic to. Turns out that leaky gut leads to some malabsorbtion that won't show up as an allergy, and not everyone has the same problems with the same foods.

Are you keeping a food diary? Try seeing if you can ID the foods that cause this. At first it may seem like everything does, but I isolated out five food initially that didn't, and then slowly kept trying to add in new ones and now I have just over a dozen I can eat without dizziness (I'm starting my second month gluten-free). I found some studies on PubMed that suggest your leaky gut will improve a little within two months, then will be even better in a year. It may take a lot longer to heal completely.

If you go to an MD, they can also test you further issues you may be having. It's normal for your system to be a little off right now, so you may want some bloodwork/stool testing done for things like H Pylori (which causes ulcers), vitamin/mineral deficiencies (anemia esp., given your dizziness), and a whole host of other things.

Hi Chaff - Thank you! I didn't know that the malabsorption could not show up as an allergy. That helps me look at it differently. I am on a rotation diet (trying at least) because the last food allergy testing I had showed that my mass consumption of rice over the last months ended up in my body creating higher levels of antibodies to rice than wheat! I am writing a food journal and I will try to take more note of which foods seem to cause the greatest dizziness. I did have bloodwork/stool testing done through these last months and I am grateful to say that my most recent bloodwork showed that my low magnesium and vitamin D levels actually went up into normal range. So it means I am absorbing something now which is beautiful to me! And H Pylori came back negative. I will check out the PubMed stuff on leaky gut you referenced - thank you!

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Welcome Rose74,

I am sorry you have suffured, but I am glad your on the trek to recover. I suffer very little dizziness, but I did have alot of brain fog and fatigue that was sort of like dizzy. I have done many things and have not had the problem since my last virus.

Diana

I have had plenty of brain fog and fatigue as well these last months. As soon as I have my first meal of the day I can't think as clearly - the dizziness and brain fog go hand in hand. I am sorry you have suffered as well!

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Hi!

If you like, check my old posts. I have same thing as you. Soon I will eat something in the morning, I will have brain fog, I can't think clearly, I'm dizzy, etc. I saw many doctors, had many tests and extensive blood works with negative results. Doctors excluded everything and were puzzled by my symptoms. Then I saw one doctor at Columbia University Hospital in New York and he told me that I have autonomic dysfunction after virus infection, or pneumonia that I had 2,5 years ago. Only test that showed something wrong was Tilt table test for 50 minutes, not short version and valsava test for parasympathetic nervous system. I'm not telling that you have it, but if you do, my advice might save you time and money.

http://www.celiac.com/gluten-free/topic/89447-hm-any-advise/

http://www.celiac.com/gluten-free/topic/87219-pots/

You might have Postprandial hypotension (I have that too with POTS). Make one test: Measure your blood pressure before meal, then 5 minutes after, then 10 minutes, 15, 30. If you see your blood pressure go down 15-20 points, you have it. Later your blood pressure will go back up to normal. My neurologist explained to me that my stomach would take too much blood for digestion of food, I wouldn't have enough for circulation to my brain (dizziness), my hearth would start pumping hard (I can feel it beating fast) to resolve blood shortage, but my brain things that I'm in distress, so instead elevating blood pressure, it will lower it (which makes me more dizzy, weak). This is autonomic dysfunction in my case. You can have different types of autonomic dysfunction.

My symptoms were very mild at the beginning, but with more time I developed very strong reactions to food. I had symptoms first. I thought that I had something wrong with my stomach, so I saw gastroenterologists to find out what was wrong. Everything was "perfect", accept I found out I might have beginning of celiac disease and I'm gluten free all this time.

Maybe this is too much information for you, and you can have just problem with malabsorption, or hypoglycemia, or maybe dumping syndrome - your food will travel very quickly from stomach to intestines, or you can be just dehydrated which can have similar symptoms.

I hope that you will get better soon and you will find out what is wrong quickly.

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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