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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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29 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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I will have to start documenting everything.  I found out why I was seriously having a hard time when I initially posted this.  My husband had made dinner for me since I was light headed and cranky and turns out there was gluten in one of the sauces he chose.  He just wasn't thinking it contained it because I asked him.  My mom (who's also a celiac) is the one that figured it out.  The last time I had any testing done was when I was pregnant with my now current two year old.  This is also when it was confirmed I was celiac.  I need to just go in and have my regular doctor give me another check up and talk with him but I just haven't done so.  Since I've posted this I've been still eating gluten free, no cheating (one time I accidently dipped something in open ranch and it quickly hit me...😴😴😴).  I still get light headed from time to time.  One time in particular I think there must have been some cross contamination (all ingredients gluten free) because my peripheral vision was very bad off and on for a half hour or so.  I just need to go in.  Always had a healthy blood pressure, not diabetic or family history that I know of.  Lungs and heart have always been healthy (always athletic).  But the lightheadedness seems to always hit me around lunch time.  I don't eat heavy or early breakfasts, but when I do it's usually fruit or eggs and potatoes.  I know my coffee creamer is gluten free.  Otherwise I pretty much stick to water but sometimes I'm not the best at drinking large amounts.

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On 2/18/2017 at 8:01 AM, plumbago said:

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

I also read your attachment and I might now need to get my back checked.  About a few months ago I went to lift my daughter out of bed and this horrible pain shot through my spine.  I literally crawled to the living room and I have very high pain tolerance.  But I thought I was fine because the pain went away and I just went on with my days.  I wonder if that has something to do with my vision especially because I sit and enjoy my coffee on the couch every morning-late morning with my daughter.  We have very relaxed mornings.  But your post I read said that posture and sitting on couches slouched could have something to do with it.

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If by attachment you mean the online dialogue, that's great. I read through the responses just now and there are some really good suggestions of possibilities, I thought. The ones I saw don't involve much about getting one's back checked (a few do). If it were me, I would never ever let anyone check my back, let alone manipulate it, unless such a person was an MD and there was something unquestionably wrong with a disc. Be very careful with your spine, guard it, protect it, love it. Don't put it in the hands of (just) anyone. Sorry, that is just me.

Anyway, here were two suggestions that stood out to me:

Quote

Hello, all. I have been researching and going to doctors for these same issues that started for me in September 2013. Two weeks ago I had what is called a Tilt Table Test which evaluates how you regulate blood pressure and heart rate in different positions. This is finally the test that showed some abnormality indicating that I possibly have a problem "POTS" Postural orthostatic tachycardia syndrome. Easy to research online, easy to get it checked out by a doctor. Good luck!!

Quote

Sitting and staring at a computer monitor sometimes requires holding the head at a slight tilt, leaning back. This can cause pressure at the base of your skull, where it rests on the Atlas vertebra. If there is slight misalignment of that vertebra, this could result in irritation at that region and subsequent pressure to build up near the base of the brain stem. The blood vessels passing between the vertebrae in the upper cervical spine become irritated and this results in slight occlusion of circulation in the cranium. Upper cervical specialists can correct alignment of the vertebra by using very gentle, highly specialized adjusting techniques. Specific x-rays are taken to determine any subluxation (misalignment) of the vertebrae. The adjustments are extremely gentle/non-forceful. Results are typically very positive. Learn more by doing an internet search: Atlas orthogonal specialist or upper cervical specialist

Again, from that last one, me personally - I'm gonna be very wary of letting anyone do any kind of "adjustment." Better yet is to understand the situation backwards and forwards, and try to make adjustments on my own. I have one spinal chord, and that is it!

Finally, caffeine can stimulates respirations and heart rate (may cause palpitations) - this may or may not cause lightheadedness. And, are your pds heavy?

 

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16 hours ago, Kaitster said:

I also read your attachment and I might now need to get my back checked.  About a few months ago I went to lift my daughter out of bed and this horrible pain shot through my spine.  I literally crawled to the living room and I have very high pain tolerance.  But I thought I was fine because the pain went away and I just went on with my days.  I wonder if that has something to do with my vision especially because I sit and enjoy my coffee on the couch every morning-late morning with my daughter.  We have very relaxed mornings.  But your post I read said that posture and sitting on couches slouched could have something to do with it.

I think it's a good idea to see your doctor.  There are so many possible causes for lightheaded feelings that it makes sense to get some basics checked.

I had some fainting spells and such years ago after going gluten-free.  I just fell over in my chair a few times.  It didn't usually get that bad though.  I had an EKG and tests but the doctors didn't find anything.  Since they had no explanation I started looking at my diet more.  My symptoms stopped when I quit eating soy.  So for me it was a food reaction that caused symptoms.

You haven't actually been gluten-free for very long.  You could try a very basic diet of whole foods for a few months to see if that helps.  Eat only meats, veggies, eggs, and nuts, and no processed foods.  No eating in restaurants either.  If it is food related issue that should help.

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@Kaitster

The recent advice you have been given is excellent.  I just want to add that two months post celiac disease diagnosis, I was vomiting in the middle of the night most likely due to gluttony (made gluten-free fried chicken).  I was not glutened.  I know that there is a steep learning curve, but my hubby had been gluten-free for 12 years, so I knew the drill.  Anyway, I passed out.  Woke up in a pool of blood (nose, but not due to hitting the floor).  I could not get up!  My back was killing me.  Hubby called 911.  The ER thought I was having a heart attack (little blip on the tests which I had even back in my 30's).  Got admitted and had a full cardio work up.  My heart is in great shape and good for another 50.  I kept telling them back pain, but vomiting, back pain, passing out, super low blood pressure, etc made all the doctors think "heart".  I went home and follow-ed up with my PCP.  One look at the x-rays and he found the fractures (vertebrae).  No wonder the nurses gave up trying to get me into a hospital gown.  

Yep, fractures!  A bone scan revealed opsteoporosis most likely from having celiac disease.  If you have compression fractures, they can slip/move.  They can cause tingling, pain, numbness, and etc.  I have to be careful as to how I bend.  Was it the vomiting that caused the fractures, the fall to the floor?  Who knows?  

Get a bone scan!  At least rule that out.  Personally, I would never let a chiropractor manipulate anything on me because I have osteoporosis.  

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59 minutes ago, cyclinglady said:

@Kaitster

The recent advice you have been given is excellent.  I just want to add that two months post celiac disease diagnosis, I was vomiting in the middle of the night most likely due to gluttony (made gluten-free fried chicken).  I was not glutened.  I know that there is a steep learning curve, but my hubby had been gluten-free for 12 years, so I knew the drill.  Anyway, I passed out.  Woke up in a pool of blood (nose, but not due to hitting the floor).  I could not get up!  My back was killing me.  Hubby called 911.  The ER thought I was having a heart attack (little blip on the tests which I had even back in my 30's).  Got admitted and had a full cardio work up.  My heart is in great shape and good for another 50.  I kept telling them back pain, but vomiting, back pain, passing out, super low blood pressure, etc made all the doctors think "heart".  I went home and follow-ed up with my PCP.  One look at the x-rays and he found the fractures (vertebrae).  No wonder the nurses gave up trying to get me into a hospital gown.  

Yep, fractures!  A bone scan revealed opsteoporosis most likely from having celiac disease.  If you have compression fractures, they can slip/move.  They can cause tingling, pain, numbness, and etc.  I have to be careful as to how I bend.  Was it the vomiting that caused the fractures, the fall to the floor?  Who knows?  

Get a bone scan!  At least rule that out.  Personally, I would never let a chiropractor manipulate anything on me because I have osteoporosis.  

I do really need to just at least go in and see my PCP.  My only excuse is having a husband who had a family full of ranchers and unless you're literally dying they don't go in.  We had a talk last night and I'm going to try better sleep and Whole Foods diet first to see what changes I have and then I can take more knowledge with me to my check up.

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3 hours ago, GFinDC said:

I think it's a good idea to see your doctor.  There are so many possible causes for lightheaded feelings that it makes sense to get some basics checked.

I had some fainting spells and such years ago after going gluten-free.  I just fell over in my chair a few times.  It didn't usually get that bad though.  I had an EKG and tests but the doctors didn't find anything.  Since they had no explanation I started looking at my diet more.  My symptoms stopped when I quit eating soy.  So for me it was a food reaction that caused symptoms.

You haven't actually been gluten-free for very long.  You could try a very basic diet of whole foods for a few months to see if that helps.  Eat only meats, veggies, eggs, and nuts, and no processed foods.  No eating in restaurants either.  If it is food related issue that should help.

Will definitely try a Whole Foods diet.  Luckily this will be pretty easy for me since my husband is already on it.  I'm going to have a hard time giving up coffee and creamer 😫.

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5 hours ago, plumbago said:

If by attachment you mean the online dialogue, that's great. I read through the responses just now and there are some really good suggestions of possibilities, I thought. The ones I saw don't involve much about getting one's back checked (a few do). If it were me, I would never ever let anyone check my back, let alone manipulate it, unless such a person was an MD and there was something unquestionably wrong with a disc. Be very careful with your spine, guard it, protect it, love it. Don't put it in the hands of (just) anyone. Sorry, that is just me.

Anyway, here were two suggestions that stood out to me:

Again, from that last one, me personally - I'm gonna be very wary of letting anyone do any kind of "adjustment." Better yet is to understand the situation backwards and forwards, and try to make adjustments on my own. I have one spinal chord, and that is it!

Finally, caffeine can stimulates respirations and heart rate (may cause palpitations) - this may or may not cause lightheadedness. And, are your pds heavy?

 

What is pds?  Pounds?  If that's what you're asking not at all, underweight with what most people would say but I have a very tiny frame.  I'm a tad over 5'9 and weigh between 126-130 (I fluctuate daily).  I played sports in high school and in college and have recently started working out again 3 times a week hoping my energy levels will pick up again.  I'm 31 years old so I just worry being this young and having these symptoms.

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Give up coffee?  Yikes!  I never had to give it up.  I think it all depends on the person.  Coffee is minimally processed.  I think your creamer may contain Things that I can not even pronounce.  Try a natural creamer (milk-based or something else).  I switched to lactose-free milk and a spot of heavy cream.  Now I do not have lactose issues, but I have been gluten free for years.  

I think Raven implied periods.  She probably was concerned about anemia which is common for celiacs and may contribut to your current symptoms.  

Go easy on the exercise.  I know it is hard when you love it.  I did some gentle exercises until my symptoms improved.  Before you know it, you will be strong!  (Just came back from a nice trail run, myself).  

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1 hour ago, Kaitster said:

What is pds?  Pounds?  If that's what you're asking not at all, underweight with what most people would say but I have a very tiny frame.  I'm a tad over 5'9 and weigh between 126-130 (I fluctuate daily).  I played sports in high school and in college and have recently started working out again 3 times a week hoping my energy levels will pick up again.  I'm 31 years old so I just worry being this young and having these symptoms.

Sorry - I meant periods.

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9 hours ago, cyclinglady said:

Give up coffee?  Yikes!  I never had to give it up.  I think it all depends on the person.  Coffee is minimally processed.  I think your creamer may contain Things that I can not even pronounce.  Try a natural creamer (milk-based or something else).  I switched to lactose-free milk and a spot of heavy cream.  Now I do not have lactose issues, but I have been gluten free for years.  

I think Raven implied periods.  She probably was concerned about anemia which is common for celiacs and may contribut to your current symptoms.  

Go easy on the exercise.  I know it is hard when you love it.  I did some gentle exercises until my symptoms improved.  Before you know it, you will be strong!  (Just came back from a nice trail run, myself).  

Ah....now that the topic has been brought up with the last 6, 7 or so months it has been heavy....I've never had heavy periods.

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9 hours ago, plumbago said:

Sorry - I meant periods.

Ah....now that the topic has been brought up with the last 6, 7 or so months it has been heavy....I've never had heavy periods.  Can you tell me why you ask?

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