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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Can't stop the lightheadedness
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13 posts in this topic

I was diagnosed being Celiac almost 3 years ago.  After having my daughter 2 years ago I started slipping on the Gluten free diet.  Every time I ate gluten I almost passed out.  But I also had a hard time gaining weight.  It got to the point where I was eating and i just wouldn't gain a pound and sit at the same weight.  Well then I thought I would just eat anything in sight, even if it had gluten.  I must have built up a tolerance because feeling light headed wasn't as bad but made me sluggish and tired.  So after a couple weeks I actually lost weight doing this (Keep in mind I know it was a dumb decision).  So anyways I've been almost 4 solid weeks gluten free and for the life of me I can not stop feeling light headed...all day.  It's worse when I'm sitting, especially while driving.  Which is what led me here because I have lots of questions.  I'd like to know what type of doctor I should see?  What questions should I be prepared to ask?  Has anyone else felt this way after eating gluten free again?  I worry especially while driving.  The good news is I'm back to my normal weight...even though I'd still like 5-10 more pounds.  Any advice would be appreciated.  And I just hope I can find this forum again after I hit the done button since this is new to me.

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You are not alone. I just got diagnosed about a month and a half ago. This week has been the first time in a long time I have not been as light headed (knock on wood) I saw a cardiologist about my dizziness especially upon standing. He diagnosed me with orthostatic hypotension and low blood pressure. His treatment was to add more salt to the diet especially if you are losing any to diarrhea and sodium tablets also and of coarse drink more water were his final words. Oh and that I was probably low on calories. Make sure you are eating enough calories. This last week has gotten a little better so honestly I don't know what changed I drink the same amount of water I only took one salt tablet but I will say I added more calories just like 300 cals. Guess it makes a difference?

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58 minutes ago, Jherm21 said:

You are not alone. I just got diagnosed about a month and a half ago. This week has been the first time in a long time I have not been as light headed (knock on wood) I saw a cardiologist about my dizziness especially upon standing. He diagnosed me with orthostatic hypotension and low blood pressure. His treatment was to add more salt to the diet especially if you are losing any to diarrhea and sodium tablets also and of coarse drink more water were his final words. Oh and that I was probably low on calories. Make sure you are eating enough calories. This last week has gotten a little better so honestly I don't know what changed I drink the same amount of water I only took one salt tablet but I will say I added more calories just like 300 cals. Guess it makes a difference?

Hoping I'm replying correctly lol.  Thank you for the input, I might have to look into the salt tablets.  I think I have been taking in enough calories...I well exceed 2000 calories easily a day.  And since I've been so strict with eating gluten free it's nice to see the initial weight I loss come back.  I have been reading all day on this subject and finally discovered "gluten withdrawal".  There are many different opinions on the subject but it would make sense.  I mean I went from cheating here and there, to eating everything in sight (probably super high amounts of gluten intake), and then quitting cold turkey.  And I read cutting out processed foods decreases your salt intake significantly.  I just hope eventually the light headedness and the feeling of passing out eventually goes away because it worries me when I drive

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That makes alot of sense. I forgot my doctor did say there may be a withdraw period. Maybe that is why mine has started to subside. How long have you been back off gluten (weeks?) the human body is so interesting yet so bard to control! 

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9 minutes ago, Jherm21 said:

That makes alot of sense. I forgot my doctor did say there may be a withdraw period. Maybe that is why mine has started to subside. How long have you been back off gluten (weeks?) the human body is so interesting yet so bard to control! 

I am obviously out of it.  I thought bare minimum that it's been 3 weeks.  It's hasn't even been 2.  February 4th was when I cut cold turkey.  So no wonder not much time has passed by and I still feel like this.  The first few days were great, and then I just couldn't focus and even when sitting I felt like I could fall over.  Wow....I can't believe it's only been 2 weeks 😑.

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Hello! I had this problem when going gluten free. It was awful for near six weeks and thoughts of withdrawel and possible mystery causes whipped up a spiral of anxiety. Then i saw a nutritionist who ordered me to start a high protein diet. This stabilised the blood sugar and i felt human again. Eggs for breakfast! Cant go wrong. Unless your vegan, im sure theres veggs most likely. 

 

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9 hours ago, Kaitster said:

...  And I just hope I can find this forum again after I hit the done button since this is new to me.

Hi,

If you click the green circle near the thread title it will open a little dialog window.  Ciick the follow option you want.  Then you'll get an email when a post is made in this thread.

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What else besides eggs help with a high protein diet. My endo told me I needed more protein. I just dont know?

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25 minutes ago, Jherm21 said:

What else besides eggs help with a high protein diet. My endo told me I needed more protein. I just dont know?

Any kind of meat, fish, avocados, peanuts, peas etc.

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Sounds like gluten withdrawal to me. You could go to your Primary care doc & get normal labs run & bp taken etc... just to check on those possibilities as well as get some vitamin & mineral levels checked out. Doing that would make you more sure/comfortable with the likelihood it's gluten withdrawal. Everyone is different so how long it will last for you is not something we can tell you. Mine actually lasted about 2 months. Some get over it in a week, 2 weeks, a month --- it all depends.

You do know all first degree family members should be tested every 2 years in the absence of symptoms & immediately if symptoms present since this is a genetic disease.

Please see our Newbie 101:

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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39 minutes ago, Jherm21 said:

What else besides eggs help with a high protein diet. My endo told me I needed more protein. I just dont know?

MEAT! Have steak & eggs for breakfast & make sure you have some good fat with the protein --- butter, olive oil, coconut oil are all good fats or even the fat on the steak. Split pea soup is good protein, dried beans are good protein. 

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On 2/16/2017 at 1:55 PM, GFinDC said:

Any kind of meat, fish, avocados, peanuts, peas etc.

Nuts, tofu, lentils.

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On 2/15/2017 at 8:07 PM, Kaitster said:

I was diagnosed being Celiac almost 3 years ago.  After having my daughter 2 years ago I started slipping on the Gluten free diet.  Every time I ate gluten I almost passed out.  But I also had a hard time gaining weight.  It got to the point where I was eating and i just wouldn't gain a pound and sit at the same weight.  Well then I thought I would just eat anything in sight, even if it had gluten.  I must have built up a tolerance because feeling light headed wasn't as bad but made me sluggish and tired.  So after a couple weeks I actually lost weight doing this (Keep in mind I know it was a dumb decision).  So anyways I've been almost 4 solid weeks gluten free and for the life of me I can not stop feeling light headed...all day.  It's worse when I'm sitting, especially while driving.  Which is what led me here because I have lots of questions.  I'd like to know what type of doctor I should see?  What questions should I be prepared to ask?  Has anyone else felt this way after eating gluten free again?  I worry especially while driving.  The good news is I'm back to my normal weight...even though I'd still like 5-10 more pounds.  Any advice would be appreciated.  And I just hope I can find this forum again after I hit the done button since this is new to me.

Are you dehydrated? Do you have diabetes? Are you taking any kind of medication? Have you had any kind of recent injury? (https://www.nytimes.com/2017/02/06/well/getting-specific-about-dizziness.html) What is your blood pressure? Do you have any kind of anemia? Have you had recent lab work? What are the results? Everything ok with lungs and heart? Are you pregnant? Document when you feel lightheaded, what you’re doing, time of day, whether or not you ate or drank, position, everything you can think of. Just really get into details and think if someone was asking you why they are lightheaded, and all the questions you’d have, to try to pinpoint the answer. Good luck.

 

Adding: Here is a dialogue online about lightheadedness when sitting:

http://www.steadyhealth.com/topics/lightheaded-when-sitting-at-computer-not-moving

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