• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Crazy Dizziness... Normal Or No?
0

13 posts in this topic

Recommended Posts

I have been suffering for 3 years with the pain and other various symptoms of Celiac Disease. I finally got a referral to a GI Dr last month and received a phone call from him 3 days before Thanksgiving to let me know I indeed had Celiac Disease. I haven't yet been back to see him like he has asked me because I was out of town on business...

I have been having major lightheaded/dizziness, shortness of breath and blacking out when I stand up. I've been getting dizzy on and off for the last 3 months or so but this is getting bad and scaring me. I don't know if I should go to the emergency room or if this is something normal I should expect. I have been following the "gluten-free diet" to the best of my ability since Friday (when I got home and could research the disease and what to do to treat it) being as the doctor's assistant didn't tell me anything over the phone, other than the doctor would like to see me on the 28th.

Any advice?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


rosetapper23    236

I'm not a doctor, but your symptoms could be due to low Vitamin B12. Do you sometimes feel as though you're "gulping" for breath? Especially when you're lying down? This is a typical symptom of B12 deficiency. Buying sublingual B12 tablets over the counter (2,500-5,000 mg) won't harm you, and you'll notice an immediate improvement in your symptoms if this is what's causing them. You may also be suffering from iron anemia, but you would need a doctor to test you for that.

Hopefully, when you see your doctor on the 28th, he will order the appropriate tests for nutritional deficiencies....and you'll have a complete answer to why you're feeling unwell. In the meantime, however, self-treating with sublingual B12 tablets won't do you any harm....and you may feel MUCH better.

Share this post


Link to post
Share on other sites
jerseyangel    409

I had that same awful dizziness before being diagnosed. I actually fainted at work a couple of times. I was anemic-- which is a fairly common symptom of Celiac. It completely resolved within about 6 months on the diet.

Your doctor can order blood testing to check for that.

Share this post


Link to post
Share on other sites
tarnalberry    314

The technical name for dizziness or lightheadedness immediately on standing is orthostatic hypotension. (When you stand up quickly, the body doesn't adjust blood pressure quickly enough and your brain literally gets too little blood for a short period of time.)

Many things contribute to it, so investigating underlying conditions/states is good. Vitamin deficiencies, vascular problems, or just straight dehydration can contribute. But know that it is not unusual for nothing to be really wrong and some people are simply more likely to experience this. (I'm one of them.)

Share this post


Link to post
Share on other sites

The technical name for dizziness or lightheadedness immediately on standing is orthostatic hypotension. (When you stand up quickly, the body doesn't adjust blood pressure quickly enough and your brain literally gets too little blood for a short period of time.)

Many things contribute to it, so investigating underlying conditions/states is good. Vitamin deficiencies, vascular problems, or just straight dehydration can contribute. But know that it is not unusual for nothing to be really wrong and some people are simply more likely to experience this. (I'm one of them.)

It's not just when I stand up, I'm continually dizzy.

Share this post


Link to post
Share on other sites
Ads by Google:


I saw my doctor on the 28th. All he said to me was "you tested positive for Celiac but I don't believe it being as the typical Celiac is severely underweight and you aren't".... I gained about 70 lbs when I has my daughter in 09. Since August I have lost 40 lbs without even trying. Luckily since my tests came out positive he is actually still treating me with the diagnosis. I have been referred to a Dietitian/Nutritionist, and she will be doing my nutritional blood work at the appointment next week and also give me vitamins. This process just seems like it's taking forever and more and more symptoms are popping up. I guess it could be worse though.

Share this post


Link to post
Share on other sites
jerseyangel    409

I saw my doctor on the 28th. All he said to me was "you tested positive for Celiac but I don't believe it being as the typical Celiac is severely underweight and you aren't".... I gained about 70 lbs when I has my daughter in 09. Since August I have lost 40 lbs without even trying. Luckily since my tests came out positive he is actually still treating me with the diagnosis. I have been referred to a Dietitian/Nutritionist, and she will be doing my nutritional blood work at the appointment next week and also give me vitamins. This process just seems like it's taking forever and more and more symptoms are popping up. I guess it could be worse though.

Ugh! This is very outdated thinking. Many people with Celiac are normal or overweight. I was slightly overweight myself (15-20 lbs.) but right before I was finally diagnosed I began losing weight rather quickly and uncharacteristically.

You tested positive, and thankfully the doctor is treating you according to that. Best of luck at the nutritionist--I think blood work is definitely in order. I still think you could be anemic, (which is common with Celiac, but your doctor may not have connected it) which would account for the constant dizziness. Keep us posted :) , and know that this will all get sorted out. We are here for ya!

Share this post


Link to post
Share on other sites


Ads by Google:


rosetapper23    236

Yes, your doctor really DOES have outdated information regarding celiac. MOST people with celiac actually are overweight rather than underweight when they are diagnosed. He doesn't know what he's talking about! I'll bet he's missed a bunch of celiac diagnoses because of his thick-skulled thinking. If you do a keyword search, you may be able to find an article or two on this very subject it so that you can show it to him.

Share this post


Link to post
Share on other sites
Takala    413

It's not just when I stand up, I'm continually dizzy.

These are symptoms of ataxia, dear. It's a neurological condition that goes along with celiac. Cheer up, once you stick to the diet strictly, it starts to go away, as long as you are careful and diligent, and secondly, it's the best motivator I've ever had to stay on a gluten free diet. Sometimes this means we are really sensitive to cross contamination, so you may want to start your journey by avoiding as much processed food as possible. And DO supplement with those gluten free B complex vitamins (which you can find in most stores) ! "Normal" people may not need them, but we do. Nutritionists may try to tell you to eat like a typical person, but gluten free.... which will include a lot of cereal and grain products, some of us just cannot do that, at all, because we do not react to carbohydrates the same way, so be wary if you sub in the usual gluten free versions of processed foods and don't improve.

Also, most of us start out by being lactose intolerant, because the part of the intestine damaged by the auto immune reaction is also the part which works to digest milk. This means that you may only be able to handle non lactose dairy products (properly processed high quality yogurt, or aged cheese, or butter) at first, or you may have to temporarily skip dairy for a while, then add the non lactose versions in later, and see if you can tolerate it. You know the current "low- fat" diet craze that claims milk fat leads to obesity ? This actually does not work for us, because skim milk has a lot of the lactose (milk sugar) and the high fat cream, which butter is made out of, does not. There is another subset of people who cannot handle any dairy, at all, because they are reacting to the cow milk protein, casein, so they end up using dairy substitutes. The third common culprit that a lot of celiacs react to is soy flour and soy proteins (sometimes trace soy oil is tolerable). I am putting this information out there now, so you will be aware of what your options are for further adjusting your diet. Also, hold off on gluten free oats until you get the rest of it under control, some of us react to them anyway, and it's best that they not be introduced and tested at first, so you can see what your reaction is, when you are healthier.

Are you taking any over the counter forms of acid reflux inhibitors ? That made it worse for me, oddly enough.

Share this post


Link to post
Share on other sites

JerseyAngel & rosetapper23: Thank you so so much! Your comments had me giggling. I just can't believe he could be so closed minded on a subject like this. Even if I was 400lbs who cares, that's no reason to say even though my tests were blatantly POSITIVE that it was not my case. That's like saying men cannot get breast cancer. It would be so much easier to get used to this if I didn't have people telling me "it's just food, you can eat it if you want" My grandmother is the only one who has done research and realizes I'm not crazy or making up the pain, so to speak. And she sticks up for me quite a bit. Luckily.

Takala: The "normal people" thing cracked me up. I keep hearing about the dairy thing but i didn't fully understand the reasoning of taking it out in the beginning. Thank you for all the help I will definitely see if any of these things effect me.

I have tried staying far away from gluten for about a week now. I had crackers in my salad (my grandmother says these were gluten free), and I have had Cocoa Pebbles Cereal for breakfast and the milk didn't seem to bother me. I DID however today, I grabbed a slice of pizza without thinking and ate half of it. I've regret it all day, been in and out of the bathroom either puking or other.... I feel stupid, but I guess it's not completely registered to me that I cannot have the things I'm used to.

Share this post


Link to post
Share on other sites


Ads by Google:


These are symptoms of ataxia, dear. It's a neurological condition that goes along with celiac. Cheer up, once you stick to the diet strictly, it starts to go away, as long as you are careful and diligent, and secondly, it's the best motivator I've ever had to stay on a gluten free diet. Sometimes this means we are really sensitive to cross contamination, so you may want to start your journey by avoiding as much processed food as possible. And DO supplement with those gluten free B complex vitamins (which you can find in most stores) ! "Normal" people may not need them, but we do. Nutritionists may try to tell you to eat like a typical person, but gluten free.... which will include a lot of cereal and grain products, some of us just cannot do that, at all, because we do not react to carbohydrates the same way, so be wary if you sub in the usual gluten free versions of processed foods and don't improve.

Also, most of us start out by being lactose intolerant, because the part of the intestine damaged by the auto immune reaction is also the part which works to digest milk. This means that you may only be able to handle non lactose dairy products (properly processed high quality yogurt, or aged cheese, or butter) at first, or you may have to temporarily skip dairy for a while, then add the non lactose versions in later, and see if you can tolerate it. You know the current "low- fat" diet craze that claims milk fat leads to obesity ? This actually does not work for us, because skim milk has a lot of the lactose (milk sugar) and the high fat cream, which butter is made out of, does not. There is another subset of people who cannot handle any dairy, at all, because they are reacting to the cow milk protein, casein, so they end up using dairy substitutes. The third common culprit that a lot of celiacs react to is soy flour and soy proteins (sometimes trace soy oil is tolerable). I am putting this information out there now, so you will be aware of what your options are for further adjusting your diet. Also, hold off on gluten free oats until you get the rest of it under control, some of us react to them anyway, and it's best that they not be introduced and tested at first, so you can see what your reaction is, when you are healthier.

Are you taking any over the counter forms of acid reflux inhibitors ? That made it worse for me, oddly enough.

Also, No ma'am... The GI doctor tried giving me something, I took it for 2 days and stopped. I can't remember to take pills and I don't even feel like I have acid reflux or heart burn or anything like that so I haven't even cared to take them.

Share this post


Link to post
Share on other sites
megsybeth    5

I hope your dizzyness goes away soon. I did have that before diagnosis for a few different reasons, but related to celiac. Low blood sugar at times, low blood pressure at times, anemia. I had ataxia but that mostly made me clumsy. Like banging my head on things, bruises all over. Your doctor is really wrong about that. About half of all celiacs are over-weight, same as the general population. And a person can be very over-weight and also be malnourished. I think your nutritionist should know this.

Pizza is the worst. When I was waiting for testing for my son and me I had pizza knowing it was probably our last "normal" pizza. Oh my god did I blow up like a pinata. I just don't understand how I didn't figure this celiac thing out years ago just based on pizza bell and...other stuff. I'm pretty sure to get it stretchy they use extra gluteny dough.

Share this post


Link to post
Share on other sites
SensitiveMe    9

I had this frightening dizziness, and shortness of breath at times. The dizziness happened also when I would be sitting or lying down. Sometimes when I would go to get up from sitting or lying down I would feel like I was passing out and so I quickly sat back down for awhile. Most scary to me was when I would be lying down and feel like I was going to fall off the bed or couch.

The dizziness as well as the shortness of breath went away...for me I think it was in about 2 months after not eating wheat.

Other symptoms eventually went away also...such as nausea, numbness and tingling of arms and legs, pain, severe skin itching. And a raised rash which was below both elbows (and which I had for many years and did not respond to any treatments) went totally away in 6 months after stopping wheat.

I did take B-12...but I used the patches you put behind the ear. They seemed helpful to me and I used them for well over a year. I have since stopped using them as I felt I didn't need them any more.

I was also given acid reflux inhibitors which I took for a few days and stopped because I didn't feel like I had acid reflux or heartburn. I really don't know why both my general doctor and digestive disease doctor ordered acid reflux pills for me and tell me to take them. I never even once complained of any acid feelings or heartburn...I just had nausea. And when I had nausea, and enough other problems going on I didn't feel like taking any pill I knew I didn't need.

I do remember how frightening these symptoms can be. I went to the Emergency Room 3 times within a couple of weeks. They did work hard to try to find out what was wrong with me but couldn't find anything specific. And at least they treated my nausea by giving me something that worked (plus a prescrition for them) instead of giving me acid reflux pills which did nothing.

My best advice is to work diligently avoiding wheat and learning what foods and things you can no longer have. Write down or print out all the forbidden foods you need to avoid because I believe the key to starting to feel better will be total elimination of wheat.

And I hope you will start to feel better soon.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,896
    • Total Posts
      938,534
  • Member Statistics

    • Total Members
      65,804
    • Most Online
      3,093

    Newest Member
    Junimoon
    Joined
  • Popular Now

  • Topics

  • Posts

    • Before ordering the endoscopy, you would think they would order the complete celiac panel.  Not all celiacs (like me) ever get a positive TTG (I do test positive to the DGP, but negative to the EMA and TTG).  You would think that the additional blood tests would be way more cost effective than going directly to endoscopy.  The endoscopy usually is still considered necessary for a celiac diagnosis, but there does not seem to be strong evidence that she has celiac disease other than a family history.   Some celiacs are seronegative negative, but your daughter was only negative on just one of the celiac tests.  So, she MIGHT be seronegative.  More investigation is needed.  She is NOT IgA deficient, at least for celiac testing (for celiac disease this test is just a control test).   The DGP test seems to be better for small children.   I do not have the complete health history of your child, but I would seek a second opinion before going to an endoscopy at this time with only one test result.  Try to find a celiac-savvy GI -- one who follows what the American GI Association  recommendations for celiac disease and what the Mayo Clinic or a large celiac research center recommends for testing protocol. https://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://gi.org/guideline/diagnosis-and-management-of-celiac-disease/  
    •   Hello linzk8! I would suggest you to go with natural foods as you are allergic to latex. One of my friends had the same problem. She also had latex allergic. She used Indian nuts to lose weight purchased from the official site of Nuez Dela India and achieved a success. You can also check the same. Eating at the right time is also important. Avoid eating very late at night. It's fine to eat in between meals, but limit your proportions. Never starve yourself! Hope this could help you!
    • My family visited Peru (my 13 year old has celiac) last Christmas, and we found Peru rather gluten free friendly. Peru is the land of corn and potatoes, and they have lots of grill meats.   Their cooking ingredients tend to be naturally gluten-free.   We did the 4 day Inca trail hike to Machu Picchu, and our chef did a great job making gluten-free meals for my daughter.  
    • Most physicians follow the joint commission’s guidelines on prescribing HTN medications which usually begin with a diuretic and calcium channel blocker (the amlodipine) - see below. Is it possible that your bp was still not controlled on the CCB (amlodipine)? So the ARB was added? Again, I’d just like to say that just bc a drug does have certain adverse effects does not mean you will have them, but I understand if you would not even want to take the chance, given a previous history of celiac disease. http://www.aafp.org/afp/2014/1001/p503.html “In the general nonblack population, including those with diabetes, initial anti-hypertensive treatment should include a thiazide diuretic, calcium channel blocker, angiotensin-converting enzyme (ACE) inhibitor, or angiotensin receptor blocker (ARB). In the general black population, including those with diabetes, initial treatment should include a thiazide diuretic or calcium channel blocker. If the target blood pressure is not reached within one month after initiating therapy, the dosage of the initial medication should be increased or a second medication should be added (thiazide diuretic, calcium channel blocker, ACE inhibitor, or ARB; do not combine an ACE inhibitor with an ARB). Blood pressure should be monitored and the treatment regimen adjusted until the target blood pressure is reached. A third drug should be added if necessary; however, if the target blood pressure cannot be achieved using only the drug classes listed above, antihypertensive drugs from other classes can be used (e.g., beta blockers, aldosterone antagonists). Referral to a physician with expertise in treating hypertension may be necessary for patients who do not reach the target blood pressure using these strategies.” Drugs for BP in different classes work by different mechanisms. It may be worth it to print out those huge, long drug information sheets and go over them with a fine toothed comb. As for CoQ10, have you checked for coupons online? Can your doctor write you an Rx and get your insurance to pay? They might say it’s on OTC and you have to pay out of pocket, but it may be worth it to find a way around that - would a prior authorization do the trick? I don’t know, just bringing up the questions. In the report you cited, these concluding words were to me, chilling:
      “Therefore, we suggest the possibility of a class effect.” Losartan, olmeseartan - doesn’t matter. And I'll say it again, there must be a way to disseminate this information more widely as I had no idea about this adverse effect, and never heard any docs speaking about it either. It really warrants wider sharing. Finally, one person who is often an overlooked resource is your pharmacist. They have just tons of knowledge and should be able to talk to you in some depth if asked, in an articulate, easy to understand way. They may even be able to do some digging and research for you. Plumbago
    • Plumbago et al, Thanks for letting me know  about the "artan" drugs being ARBs. I think Cyclinglady was right the Losartan research is not free and thus not public. I saw the link with no abstract but wanted to read it to confirm as you noted in your ETA that it was another "Artan" drug Losartan causing the problem. I believe it is. I found a great (after more digging) review of all the "artans"/ARBs or most of them about whether they can contribute to sprue symptom's in addition to Benicar. here on wiley as studied by the alimentary pharmacology and therapeutic journal (AP&T) for short. http://onlinelibrary.wiley.com/doi/10.1111/apt.14176/full I wish I knew how to post the able alone it is very informative.  Please scroll over the table to the end of it since it even tells how long to expect before your sprue symptom's/conditions improve IF the "artan" drug is causing your symptom's which I find the most helpful thing about the table.  They also note histological feature (degree of villi blunting) to expect on biopsy. They note Losartan can cause "total atrophy of duodenal villi" by their reporting. I also recently had an issue with my potassium levels so I feel sure it is the Losartan. I remember reading a study about how losartan was better at the "chronic cough" I had developed using Lisinopril so I changed to Losartan a few years ago . . . now I find I could of been making my GI symptom's worse. But to answer  your other question since I began taking Folic Acid a few months ago my BP numbers went down to a healthy level of 120/80 or less sometimes . . . but with medicine. I had already been thinking I wanted to try get off the BP medicine (for good) so this is more motivation. C0q10 worked well but it is too expensive for me to take all the time! I called my doctor to have them put me back on Amlodipine/Norvasc and I can't remember why I changed off that medicine to begin with now.  I do remember needing two medicine's back then to control my BP so maybe we stopped the Norvasc instead of the Linsinopril. But now that they have put me back on Norvasc I hope my potassium levels will correct themselves. I just don't feel safe anymore taking Losartan after learning it could be making my GI symptom's worse or causing the to be unreliable. I first thought my touch of D. was from an antibiotic round but when kefir didn't get me back on track I suspected something else when my Vitamin D levels showed up low too again! Thanks everybody for ya'lls great suggestions and good research on my behalf. I also recommend this verywell article if you are still having GI problems and you suspect an "artan" like ARBs BP medicine and looking for a medicine that might have less severe  or more manageable symptom's for your lifestyle because it comprehensively list's the medicine's by drug types. https://www.verywell.com/hypertension-drugs-1745989 no medicine is without a side effect as (I) am learning but I never thought sprue would be one for my BP medicine and why I prefer Vitamins when I can find out which one too take. Now that I have the Norvasc approved as a replacement for the Losartan I might see if my BP goes up again if I stop my medicine all together as I was hoping the Folic Acid might help me with it (without medicine) and it explains why I was low in Folic Acid to begin with again. posterboy,    
  • Upcoming Events