Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Symptom Of Undiagnosed Celiac Disease?


debmidge

Recommended Posts

debmidge Rising Star

Any thoughts?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



spunky Contributor

Is that the ONLY symptom???

Sounds like either blood sugar problems, blood pressure related (low pressure and getting up too fast), or could even be something like a heart murmur.

It's always possible celiac could be ultimately behind the problem... I guess... but it sounds like something else might be immediately responsible.

jerseyangel Proficient

Could be, in that anemia is a very common symptom of Celiac. This was the very thing that caused me to stop working--it got so that I couldn't stand for very long before I'd get lightheaded and pass out.

I was on iron, but turns out it wasn't being absorbed.

It could also be many other things, but while the person is having a workup done, it would be a good idea to run the Celiac Panel in addition just in case. We're all different, but anemia was my very first symptom--I had it borderline for years and years and it was always shrugged off as a "woman's" thing. It wasn't until my numbers fell sharply in a 2 month period that my doctor got concerned.

I guess what I'm saying is that had I been tested years ago when I was "only" anemic, I could have avoided all the illness, misdiagnosis and unnecessary treatment.

mushroom Proficient

Depends on what triggers the fainting spells. I used to pass out a lot, but it was always from the pressure of the gas and bloating getting just too much for me. I could always tell when it was coming on and manage to lie down ahead of time. Thank goodness I don't DO that anymore :lol:

debmidge Rising Star

It's my celiac husband's sister.... I am trying to get her to get tested for celiac disease but

she is resisting...but has some gas & stomach issues and makes more BM's than

average (all this has been going on for years). She eats and is painfully thin.

Lately she's having fainting spells - so bad that last summer she fell from fainting

after she ate dinner and fractured both sides of her jaw. Hospital ran every

test BUT celiac and she is Ok - has some irregular heart beat going on; but they

Ok'd her to drive a car, etc.

I was going to try to link the faininting with celaic to urge her to get tested

once and for all.

mushroom Proficient
It's my celiac husband's sister.... I am trying to get her to get tested for celiac disease but

she is resisting...but has some gas & stomach issues and makes more BM's than

average (all this has been going on for years). She eats and is painfully thin.

Lately she's having fainting spells - so bad that last summer she fell from fainting

after she ate dinner and fractured both sides of her jaw. Hospital ran every

test BUT celiac and she is Ok - has some irregular heart beat going on; but they

Ok'd her to drive a car, etc.

I was going to try to link the faininting with celaic to urge her to get tested

once and for all.

Deb: Ask her some more questions about her fainting, whether it is associated with the gassiness and bloating, whether it comes on after eating specific foods, whether she is aware of it pending. For me it was always associated with pressure on the digestive system; often if I could have a BM and pass the gas and/or burp it up I could avoid it. (I used to alternate between D and C). But I always knew it was coming because I would get a ringing in my ears and spaciness and this unbearable pressure. I would often end up in the toilet not knowing whether to sit on it or throw up; once even passed out into the toilet (delightful!!). It was usually a momentary kind of passing out; I would normally come right to and be all right, but it was disconcerting for those I was dining with.

P.S. I used to have irregular and/or rapid heartbeats too.

sbj Rookie

Fainting and dizziness could be due to lack of nourishment. Since she is painfully thin this makes sense. Excessive BMs could mean that she is passing food rapidly without absorbing properly. These symptoms are consistent with intestinal damage due to celiac.

However, not trying to scare you but my brother had been losing weight to the point that he was very thin. He took many trips to the bathroom but claimed he had no problems. He had a fainting spell or two that he said was because he was overly tired and had drank too much. Turned out that he was malnourished and having excessive/watery BMs due to colorectal cancer.

Has she had a colonoscopy or CT scan? Stool testing? What's the family history? Fainting spells are very serious - she needs a better answer from her doctors. Do you think that she is being completely honest about her symptoms?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



debmidge Rising Star
Fainting and dizziness could be due to lack of nourishment. Since she is painfully thin this makes sense. Excessive BMs could mean that she is passing food rapidly without absorbing properly. These symptoms are consistent with intestinal damage due to celiac.

However, not trying to scare you but my brother had been losing weight to the point that he was very thin. He took many trips to the bathroom but claimed he had no problems. He had a fainting spell or two that he said was because he was overly tired and had drank too much. Turned out that he was malnourished and having excessive/watery BMs due to colorectal cancer.

Has she had a colonoscopy or CT scan? Stool testing? What's the family history? Fainting spells are very serious - she needs a better answer from her doctors. Do you think that she is being completely honest about her symptoms?

wel.....she has been with multiple B.M.s for many years....she doesn't go to her doctor

anymore. She was put on a "halter monitor" for about 4 days and nothing substantial showed up

although he put her on some kind of heart medicines, which I do not think she takes any more. She hasn't had a faining spell since a couple of years ago, but that one was not her first.

She has never had a colonoscopy nor a CT Scan...nor stool testing. Family history? Parents were healthy as horses, as the saying goes. Honest about her symptoms? I think so. I have spoken to her last internist (by coincidence) and told him about brother having celiac and he felt she had

no symptoms to indicate celiac...this doctor is a stupid idiot (was going to use an unkind word

instead of idiot). I thought I'd get him to see the "light" and order a celiac panel. It didn't work.

I briefly told her that the fainting could be sign of celiac and she brushes it off as if I am

over reacting.

missy'smom Collaborator

I've been fainting/passing out since I was a child and never given a reason and I asked several times over the years if there was anything I cold do about it. Until recently no doc. ever tested me for anything or even cared, just wrote it off as all in my head. I have been laughed at from nurses on the other side of the door and had health care professionals literally shoo me out of their offices because I passed out and messing up their schedule and been charged double appointment fees because I passed out and took up more than the alotted time. I have been on a halter monitor twice and docs never said anything about results. Saw a cardiologist who ran a stress test and ultrasound, echo cariogram? and again, if there was a problem nothing mentioned to me. Put me on "the most easily tolerated" beta blocker to supposedly prevent me from fainting. Full dose gave me really bad overdose reaction and half a tablet made me feel so bad even friends said I looked sick, so that I asked to be taken off-sucked it up for a good month though until signs of serious bad thoughts surfaced as a side effect. Meds had warnings about using if you have asthma or diabetes and I brought it up to doc before taking it as I had reason to suspect that I had both. Now I found out that I have diabetes and may have had it for decades so I wonder if it was low blood sugar all this time. I asked a doc to test me for diabetes when I was in my 20's and he literally laughed at me, told me I was too young and walked out on me. I have had a few docs recently track my B.P. and one who took a finger stick for BG and my B.P. drops very low and takes a long time to go up again, whether or not I actually pass out. The time that they took a finger stick my BG was low. As far as I know, I didn't have active celiac disease as a child, so I see no connection with celiac disease and my fainting-sorry and sorry for the rant. Idiot DR.'s Grrrrr...!

jerseyangel Proficient

My doctor thought that my heart may have been causing my dizziness and fainting, too. I underwent a stress echocardiogram and wore a Holter Monitor, too--both tests came out normal. Over the years, they thought of everything BUT Celiac! <_<

Especially with the family history, it's a shame she won't be tested.

angieInCA Apprentice

Hypokalemia might be a factor.

I have suffered from Hypokalemia off and on for over 24 years. First diagnosed with my first pregnancy. Fainting and dizziness for no reason.

Hypokalemia is a condition of below normal levels of potassium in the blood serum. Potassium, a necessary electrolyte, facilitates nerve impulse conduction and the contraction of skeletal and smooth muscles, including the heart.

I had to have weekly blood tests to watch the level of Potassium, Magnesium and Sodium in my body while taking supplements to ensure proper heart function. No Doctor ever found or actually activally sought a reason why I do not retain electrolytes. Now it all makes so much sense to me. Obviously I wasn't absorbing enough to maintain the necessary levels. When I mentioned this to my new GI he just shook his head and asked "And no one ever thought to test you for Celiac Sprue?"

Gemini Experienced
Any thoughts?

Fainting is absolutely connected to Celiac Disease but most doctors miss this completely. I had a couple of whooper fainting spells towards the end stage before I was diagnosed. One of them occurred in a restaurant, much to my embarrassment and ended up with an ambulance trip to the ER. Once there, they discovered I was severely anemic, which was no surprise to me because that had been an ongoing issue during my entire adult life. I gave up on going to doctors about it because all they kept honing in on was internal bleeding, of which I had no other symptoms. I KNEW that was not the problem but try convincing the AMA. The hospital staff were extremely caring and kind but I ended up checking myself out because, once again, they wanted to do all the usual disgusting tests for bleeding and I refused.

What ended up happening was I was so malnourished from Celiac and wasn't absorbing anything by the time of diagnosis, I was passing out. I wasn't absorbing food and at the restaurant, I had a few sips of an alcoholic beverage before the meal arrived, which sent my blood sugar soaring and I ended up on the floor. I don't have any blood sugar problems today at all because I am healed and absorbing food properly.

Your sis-in-law has a Celiac brother, is extremely thin regardless of food intake amounts, has larger than normal BM activity....these were my symptoms for years and I cannot for the life of me figure out what the AMA didn't get? A patient that presents with low body weight and all these symptoms and they never look for mal-absorption? I think your sis-in-law is just suffering from denial and she may have to get a lot sicker before she accepts this. Hindsight is 20/20 and it's too bad foresight isn't! Good luck to you all and I hope she will see the light soon!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,166
    • Most Online (within 30 mins)
      7,748

    melindakathleen
    Newest Member
    melindakathleen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...