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

Not Diagnosed Yet


Tiffy

Recommended Posts

Tiffy Newbie

Hi, I just joined this forum because I believe that I have celiac disease/gluten intolerance. I have been on the gluten free diet for more than three months and I cannot even describe the joy I feel because for the first time in my life I am not suffering from stomach pains and other problems. I took a blood test after being on the gluten free diet for three months, but the test results were negative. I was wondering if anyone could tell me if the symptoms that I suffered through before the gluten-free diet sounds like celiac disease/gluten intolerance.

Extreme weight loss

stomach and intestinal pains

bloated stomach almost all the time(would get worse after I ate, esp. if I ate things with wheat)

-one time it was so bad that I could barely breath and I fainted

constipation(this is embarrassing but sometimes I couldn't go for more than a week!)

Rapid heart beat after I ate things with wheat in it

Joint pains

headaches

always feeling tired

lost appetite (but sometimes I would be really hungry, so even after I ate I would still feel hungry)

muscle pains

muscle spasms

There were probably a lot more that I can't think of right now

These are most of the symptoms I had, I feel so much better now. I did on accident have a piece of pasta in a soup at the dining hall at the end of last week. For probably 4 days I felt pretty sick, but I am a lot better now. I feel so happy that I finally found out what was wrong with me for pretty much my whole life. Thank you for taking the time to read this and if anyone could tell me if the symptoms above sound like celiac disease/gluten intolerance that would be great.

-Thank you!


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Hi, and welcome to these boards. Yes, all your symptoms and what you describe sure sounds like classic celiac disease. Of course your blood work was negative after being three months gluten-free. In order to be positive it should have been done before you eliminated gluten from your diet.

Anyway, it is obvious that you are at least gluten intolerant. You feel sick when consuming wheat, and you feel better when you don't.

Do you know that gluten is not just in wheat, but rye and barley as well? You will need to avoid those, too, to really get better.

OnMyWayToPA Newbie

I am also new here, for about the same reason. I believe I may have celiac disease, but have not been tested. Doctors keep telling me I have IBS without doing any tests, but I haven't gotten any better. I can't get into a doctor for 5 weeks, and know that I shouldn't start a diet without being tested, but am not sure I can deal with this for much longer as I have progressively gotten much worse. Any suggestions on how to speed this process up? And how I can get back to being my normal, happy self? :)

Tiffy Newbie
Hi, and welcome to these boards. Yes, all your symptoms and what you describe sure sounds like classic celiac disease. Of course your blood work was negative after being three months gluten-free. In order to be positive it should have been done before you eliminated gluten from your diet.

Anyway, it is obvious that you are at least gluten intolerant. You feel sick when consuming wheat, and you feel better when you don't.

Do you know that gluten is not just in wheat, but rye and barley as well? You will need to avoid those, too, to really get better.

Hi, thank you for the response.

GlutenWrangler Contributor

Tiffy,

It's great that you have had such a dramatic improvement on the gluten-free diet. Don't worry about your negative blood tests. That's to be expected. Your symptoms are just like mine were, classic Celiac Disease. You symptoms and your positive dietary response is a sure sign that you are a Celiac/Gluten Intolerant. Personally, I believe that Gluten Intolerance is just an earlier form of Celiac Disease, but to each his own. Anyway, welcome to the forum!

-Brian

Tiffy Newbie
Tiffy,

It's great that you have had such a dramatic improvement on the gluten-free diet. Don't worry about your negative blood tests. That's to be expected. Your symptoms are just like mine were, classic Celiac Disease. You symptoms and your positive dietary response is a sure sign that you are a Celiac/Gluten Intolerant. Personally, I believe that Gluten Intolerance is just an earlier form of Celiac Disease, but to each his own. Anyway, welcome to the forum!

-Brian

Hi GlutenWrangler, thank you for the response. It is nice that there are others out there who understand and are supportive.

-Tiffy

Tiffy Newbie
I am also new here, for about the same reason. I believe I may have celiac disease, but have not been tested. Doctors keep telling me I have IBS without doing any tests, but I haven't gotten any better. I can't get into a doctor for 5 weeks, and know that I shouldn't start a diet without being tested, but am not sure I can deal with this for much longer as I have progressively gotten much worse. Any suggestions on how to speed this process up? And how I can get back to being my normal, happy self? :)

Hi, I hope that you get better soon. I believe that one of the things that really helped me was eating plain yogurt three times a day. I feel that the probiotics from the yogurt really help not only the stomach and the intestines but also your whole body. The calcium from the yogurt is also essential for not only your bones but also your intestines.

-Tiffy


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,162
    • Most Online (within 30 mins)
      7,748

    Jean Kemling
    Newest Member
    Jean Kemling
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • 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/   
    • trents
      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
×
×
  • Create New...