Jump to content
  • 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

Recent Diagnosis - Symptom Question


laluka

Recommended Posts

laluka Rookie

A little background first. I was recently diagnosed with celiac disease via biopsy. This was after unexplained anemia. I originally went to the doctor because I was lightheaded throughout the day, particularly after eating, and quite tired. She checked my ferritin level (but not hemoglobin - I'm not sure why). My ferritin was at 5. She said that explained the symptoms and she prescribed iron. I went back 4 months later. I had stopped feeling lightheaded after 4 weeks on the iron, but it had returned about 1 week before I went to have my iron rechecked. Again, she only checked the ferritin which was at 4. I switched doctors. Three weeks later the new doctor checked my hemoglobin (it was 11 which is okay I believe), my ferritin (5) and did a CBC and screened for celiac disease. At any rate, the doctor said the lightheadedness shouldn't be caused by the iron because the hemoglobin was at an acceptable level. I am still taking the iron to try to build the ferritin up.

Anyway, this leads to my question, the doctor said that it was probably the celiac disease that was causing my lightheadedness. I have never heard of this as a symptom. Has anyone else experienced anything like this with celiac disease?

Thanks. Laura


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



Celiac.com Sponsor (A8-M):



flagbabyds Collaborator

First of all Welcome to the board, it is very helpful and you can find some good resources.

Lightheadeness can be a symptom of celiac, there can be so many symptoms of celiac disease. And lightheadesness can be one of a very common symptom of celiac. So can anemia. A 10 hemaglobin can be pretty low, mine got down to 7 and needed blood transfusions.

I hope the lightheadesness leaves soon once you start the gluten-free diet, and I encourage you to come here as often and ask any questions.

No questions are too stupid or gross for us here!

Canadian Karen Community Regular

Hi and welcome to the board!

Yes, lightheadedness can be a symptom of celiac particularly with malabsorption issues, not only of iron, but other vitamins and minerals also. At any rate, you do have a diagnosis and your next order of business is a crash course in the world of gluten free living. There is no other place that is better to be then here for that!

Read, read, read! And ask alot of questions! We are always here to answer them, as best we can! Also, the only stupid question is the question that is not asked. Trust me, we have all been where you are right now and we know how daunting of a task it seems like at first. It will get easier though, honest!

There's a bunch of really great people here for support, so just post away!

Karen

laluka Rookie

Thank you for the responses. That is good to know. I've been worrying that the lightheadedness might be caused by something else. I feel better.

Laura

flagbabyds Collaborator

You should be fine, but get your toher vitamin levels checked so you can make sure you don't have other vitamin deficiencies that could be causing the problem.

jerseyangel Proficient

Lightheadedness was one of my first symptoms. At the time I was first tested, my hemiglobin was at 11. I could handle the lightheaded feeling then--but it was bothersome. Within 2 1/2 months, it dropped to 8. The doctor put me on iron suppliments which upset my stomach terribly. Luckily, Celiac was finally diagnosed 7 months later. After 6 months on the gluten-free diet, my level went to 14.5--the highest I have ever remembered it being. I would definately keep an eye on it :)

laluka Rookie

Patti, were you able to stop taking the iron then? I hate taking it and am hoping I'll be able to stop eventually with the gluten free diet.

Laura


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



Celiac.com Sponsor (A8-M):



Rusla Enthusiast

Welcome to the group.

Being light headed is a symptom. Also you were low in ferritin which is a sign of that also. I suggest trying the sublingual B-12, you will find it in health food stores. It goes directly into the blood stream. I could not absorb normal vitamin B-12 but the doctor at that time was not bright enough to figure out why.

jerseyangel Proficient
Patti, were you able to stop taking the iron then? I hate taking it and am hoping I'll be able to stop eventually with the gluten free diet.

Laura

Yes! Since I could not wait to stop taking the iron (because of the side effects), I began using a Centrum w/iron soon after I went gluten-free. The other reason was that I couldn't tell if the diet was helping my stomach while I was still taking the iron. The amount in the Centrum was sufficient for me once I began to absorb the iron from my foods.

tiffjake Enthusiast

Laluka, nice to meet ya! I want to scream YES to your question about lightheadedness!!! I felt lighheaded/faint so much that the doc wanted to put me on heart meds but didn't because my blood pressure was always in a safe range. It was so strange. After going gluten-free (really a gluten-free test for me) for three weeks, and then in a rebelion, eating a bowl of spag, I passed out at the mall and ended up at the ER because of it! Turns out, according to the ER doc, that my intestines had shut down, and to try to deal with the problem, my body flooded my abdomen with fluid (bloated belly) and my brain/body couldn't handle the rapid change. I don't know/remember the details of his explaination. I am not sure how much of it was a guess. But I will tell you that nothing like that has happened since I went seriously gluten free!!! No more faint feelings or strange lightheadedness. Hope my story can help you some how! God Bless!!! TiffJake

laluka Rookie

Thank you all so much. I have been eating gluten free since my diagnosis and haven't had any serious lightheadedness since, but I keep worrying that it will come back and it had been making me miserable. It is comforting to know that it is a symptom of the celiac disease.

Laura

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,611
    • Most Online (within 30 mins)
      7,748

    Rotary
    Newest Member
    Rotary
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • itsdunerie
      Dang......did it again and yeah I should admit I am 63 with clumsy phone thumbs. I started feeling better quickly and a doctor a year later said I had to eat  poison (gluten) every day for a month so he could formally diagnose me and NO FREAKING WAY. I couldn't then and can't imagine putting my body through that crap (no pun intended) on purpose ever again.  Why ingest poison for a month to have some doctor say Hey, All you Have To Do Is Never Eat poison Again.. 
    • itsdunerie
      Poop head, sorry, but I accidentally posted and can't figure out how to continue my post. My long winded post was going to tell you that after I figu
    • itsdunerie
      15 years ago my best friend 'diagnosed' me as Celiac. Her little nephew had been formally diagnosed and her observations of me dealing with brain fog, stomach problems and other stuff had her convincing me to try going gluten free. Oh my heavens, within 3 days, no lie, I felt human again. Took me about a y
    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.